Holiday Season

I hope everyone is having a great (or tolerable) holiday this year. I'm happy to be home, but it just doesn't feel like Christmas to me. I guess I never got into the Christmas spirit this year. Chronic pain can do that to you. My hips are hurting. I would expect the fractured one to be hurting because it is still healing, but the other hip is hurting too. I'm managing. I just feel like I am a lot older than I actually am. Hopefully when I go back to Duke in January they can give me something to ease the pain on a daily basis without narcotics!

Even though I was complaining above, I am very thankful to be home for Christmas this year. The past two years I was in the hospital and feeling like CF was robbing me of my life again. Our family Christmas was Monday and I was so glad to see my sis, bro, and my baby! It was a fun filled day, especially watching my nephew (my baby) opening his presents. It's always good when we can all get together.

I am thankful to God for giving me a second chance at life. I am always praying for my donor and donor's family. I am grateful that even through all the setbacks I've had, none have involved my lungs much. They are still working great!

I hope everyone had a Very Merry Christmas and Have A Happy New Year!

Enjoying The Home Life

We finally made it home on Sat. Dec. 4th. It was a looong drive, but we made it in 10 1/2 hrs. We only stopped twice and drove straight through. It wasn't a bad ride, it just took forever, lol. We arrived very early in the morning, but mama had been saying how she felt like a kid waiting for Christmas, referring to us coming home. I went to their house and woke them up. I went to mama and whispered, "Merry Christmas" and she said "Oh my baby's home". She reached over and shook daddy and said "Our baby is home" and he about jumped straight up out of the bed. Mama's specialty is cooking and she offered to cook breakfast at 5:30 in the morning, but I told her to go back to sleep and we would eat later. We had brunch later in the morning. It was great to be back with my family!

I had a bronch on the day we left which was before the results came in. The reason for leaving before we got the results was that my dad was having surgery for prostate cancer the following week and I intended to be there. I had even re-scheduled my appointments so we could leave earlier than planned. Daddy's surgery went well and he is recovering at home, doing better everyday. He won't have to take chemo or radiation because the whole prostate was removed and not just the cancer itself. My family has truly been blessed. Even with all the things that have happened to us, it could always be worse.

I worry about my friend Jess and the suffering she is enduring now. She is currently in the hospital at Duke. She has had Gastro problems since her lung transplant back in April. It makes it a total bummer because it's right at Christmas. I hope she gets out of the hospital before then. I miss you Jess! Love You Cysta!

Being at home has been wonderful. After six months away from home makes me feel like my new home is brand new all over again. The results from my last bronch had no rejection so I don't have to go back to Duke till Jan 20th. I get to enjoy the holidays with my family. A week after getting back home we got a new puppy. We named her Niki, she's a solid black Shih-Tzu. She is a little chomper. She loves to chew on everything she can get her little teeth on, but she's also a cute little fur ball that I can't resist. I still get sad thinking of the two little dogs we had to give away back when I was so sick with bad lungs. I found out later, after transplant, that I can have an inside dog I just have to be careful about certain things. I can handle that. I like having a furry companion because when Philip goes back to work I certainly won't get bored with my four-legged friend, lol!

I was invited to a Christmas Luncheon today from the office that I used to work at. It was really nice to still be considered a part of the work family. I used to sell Avon so when I quit working there I still came by to deliver Avon and visit with everyone. They have all kept up with my transplant process and some of the ladies had a fundraiser for me. They are now in the process of doing another fundraiser for me. They are awesome ladies and I am Thankful to have them as my friends.

Well, that's all I've got to report for now. I'll post again soon. Love To All!

Time Is Standing Still

I know we are going home to MS today and I have been up since 3:30am in anticipation of it I suppose. I'm like a little kid waiting for Christmas morning. It's just not getting here fast enough, lol. It's six o'clock now so I mananged to waste away part of the time. I can't eat anything because of the bronch so I'll just compute and watch tv. Philip is asleep. I mention that because he has had his days and nights mixed up. He usually stays up till 4am or later then sleeps most of the day. That will come in handy when he's driving us home tonite. We are driving straight through. A 12hr drive. Road Trip! I'm game. If it will get me to my home, I would ride 24hrs straight. I would plan to help drive, but my license expired back in October and I don't want to risk going to jail instead of making it home to MS, lol. Note to self: Get license renewed ASAP. I still can't believe today is the day!!! Come on Friday evening!

Going Home

Praise The Lord my time has come. I am finally getting to go home to Mississippi tomorrow! I am sooo excited. I didn't want to make it public until after my clinic visit today. Please pray that the bronch I'm having tomorrow doesn't show rejection because that would mean I would have to come right back up here and be admitted to the hospital for another round of ivs. The main reason for wanting to get home is my Daddy was diagnosed with prostate cancer and he is having surgery next week. Please pray that everything goes well. I may have to come back up here next week or the next, but I'm going to be home for his surgery. If I'm not showing rejection, I won't have to come back for at least 4 weeks. I haven't earned my 3 months yet because of past rejection. I have to have 2 clean bronchs before I can stop coming once a month. It's better to be safe than sorry I always say! It's only a 13hr drive, lol! I haven't been home since June! Six months is a long time to be away from family and friends. Please pray for our safe travel tomorrow. I'll update as soon as I get settled back into my own surroundings!!! Did I mention I'm excited!

Thanksgiving with Friends

I didn't get to be home for Thanksgiving this year. This is the first time ever that I haven't been with my family for Thanksgiving. We did have a Thanksgiving meal along with other transplant families in the main dining room of the hotel. It was really nice to be able to spend time with my extended family. I even met a few new transplant patients and their family.
I know everyone is thankful at Thanksgiving, but this year is something special. I am thankful to still be alive. I am thankful for my loving family and friends. I am thankful for my donor and his/her family for giving me a second chance at life.

10 things I'm thankful for:
1. My hubby, Philip, who has taken excellent care of me through all of the transplant process.
2. The new friends I have met since coming to North Carolina.
3. Breathing without O2
4. Being able to walk at least 2 miles and being able to talk during the walk.
5. Understanding my pill regimen and filling my medicine container without my med list, lol.
6. That my lungs are doing great.
7. That I'll be going home soon. (provided nothing else goes wrong)
8. Mama's Home Cooking (I miss it!)
9. My baby dog Diamond (she will be 11 in April, I miss my doggie)
10.To God for His loving mercy he has bestowed upon me.

That is only a small portion of what I have to be thankful for this year. It is still amazing to me to be able to do everyday activities without being exhausted after doing one task and then needing a nap. I've said it many times already, but there is no other way to sum it up. I am truly blessed. God Rules!

Mmm Mmm Red Lobster

I got to eat at Red Lobster today. Oh how I love seafood. I've been told by my hubby, "if it swims in the ocean you'll eat it". I don't know about that, but I do like a variety of seafood. That is the first seafood I've had since we got here back in June. Well, I did have fish in the hospital (nasty) so that doesn't count. Just wanted to say, "I'm full and happy!" Love To All and can't wait to get home to MS!

Did I Mention I'm Ready To Go Home?

I like staying here in Durham, NC, but I am sooo ready for the next three weeks to be up. I am praying hard that we will get to head out to MS this time. I am trying to take it easy with my exercising and just general moving around. I certainly do not want to fracture any more bones, lol! It's ridiculous how many little setbacks I've had. Now enough is enough. I've made the joke that if we have to go home on Christmas Eve and come back up here Christmas Day, I WILL be home for Christmas! I don't expect that to happen, but with my track record of things going wrong who knows what might happen?

On another note: I'm still loving my hair. I've had it cut like this before, but being able to breathe now makes it even easier to fix than before. I was excited the other day when I was getting ready to meet a friend and I took a shower, washed my hair, put on makeup, fixed my hair, and got dressed all in 45 minutes! That is awesome! It used to take me at least 2 hrs to get ready to go somewhere with all the rests I would have to take. Oh, and there wasn't any washing hair and showering at the same time or I would have been too tired to finish getting ready to go anywhere. I love my life now. I can't wait to get back to my "normal" life back home and really know what I can accomplish with my new breathers. They are awesome! I'm planning to eat at Red Lobster tomorrow. I'm having cravings for seafood and I know Red Lobster is good so don't give me grief about finding a new seafood place while we're here. I'm a little bit of a comfort zone type person when it comes to food :-)

I want to thank my donor and I continue to pray for my donor's family. Love To All!

Got A New Do!

I thought I might better update my profile pic with my latest hairdo. I was so tired of my "natural" color (light brown) and the plain ole bob I had. I've had my hair cut like this before and I got many compliments on it. Even though my face is puffy I think it still helps it some to look a little slimmer than the other hairdo. Anyway, here is the pic. Let me know what you think. I'm up for constructive criticizm too :-P Love To All!

Good Ole Waffle House

This morning I woke up about 3:30am and couldn't go back to sleep. Not long afterward Philip got up wanting breakfast. Of course no fast food joint is open at that time of the morning, except waffle house. It's a trusty standby and it was good too. It was always a good place to go after a night of dancing, back in my wilder days, hee hee. I was proud of myself for not overstuffing, but I enjoyed it. It was 35 degrees outside and we were freezing saying "why are we out in this cold for something to eat?". It was fun too. Something different. When we got back he got on the couch and went back to sleep. Me, I'm still wide awake and can probably eat something else in a little bit. :) Thank goodness the nausea is subsiding. Maybe my tummy is back to normal. Feels like it anyway. Love to All!

Ortho Appt.

Today I had to go to the ortho doc for a follow up from my surgery. I got the staples out and the doc said the bone didn't look like it was healing yet, but with all the steroids I've been on it's not uncommon. It'll just take a looong time to completely heal. I'll just be glad when the muscles get stretched back out or whatever it is they are doing. I do know my left leg hurts when I walk. It IS the muscle this time. I mentioned to the doc I wish I knew how it happened and he said, it could have been wear over time. It was probably nothing I did that made it happen immediately, I just have brittle bones. Thanks Prednisone!(Sarcasm) It could be worse I know that. It could always be worse, but after today I've got to go back to see the doc in a month. This means that we won't get to come home till after Dec. 10th. Please continue to pray that these aggravating setbacks are behind us now. :) Love To All!

I Wanna Go Home! A Rant

As much as I've loved having the opportunity for a new life and being able to breathe freely, I am coming to the point that I am ready to go home to Mississippi. I miss my family, friends, and my life. My life has been on hold all year long with transplant, rejections, fractures, doctor visits, and just being away from my home. I don't want this post to be a pitty party of sorts, but I am a bit down in the dumps tonight. I try to stay upbeat and a trooper, but even the strongest have weak points and I am reaching mine. I just get so tired of thinking "just a couple more weeks" and I'll be able to go home, then something else falls apart. I know it could be a lot worse, but to me it is getting to be bad enough to weigh on my mind. I am blessed I know this, but I can't help my feelings. It doesn't help that I've been in the hospital for a week now and I hope to heck to go home to the hotel tomorrow. At least back to the hotel at this point will be tolerable. I can't stand it in here much longer. I am going stir crazy and I have lost almost all the strength I had gained on top of it all. It doesn't take long to lose what you gained when you are layed up in a hospital. Besides I was already weak from not being able to walk on my fractured hip for two weeks. GRRRR!!! Okay, I'm finished ranting now. Only better days tomorrow. I won't give up hope :) Love To All!

I Am Still Blessed.....

After all I have been through since coming to Duke in June, I have to say I am very fortunate to still be here. Just a recap of my journey I received my double lung transplant on July 1st. Not long afterward I developed a seroma which is a fluid filled pocket, this was located in my groin area. I wore a wound vac pump for three months until it finally healed. In the meantime, I battled a bout of mild rejection which formed as fluid around my lung. Once that was taken care of, I was on the mend, until my left hip developed a stress fracture. The only assumption is that I got it from prolonged steroid use. Currently, I am still recovering from the hip surgery and it is going great only now I have a bowel blockage from too many pain meds. I've had an ng tube down my nose into my stomach with no food only ice chips, until earlier today. I finally got cleared to have clear liquids and laxatives and an enema. Oh yay! I also had mild rejection again with the last bronchoscopy. I've been treated again with solumedrol (iv steroids). This is not uncommon after lung transplant so I am not alarmed. I am breathing good and this is another techicallity keeping me from getting home to MS. At least I am seeing the light at the end of the tunnel again and hopefully will be getting out of here by the weekend (back to the hotel). I am still optimistic because compared to how sick I was before I got here, what I am dealing with now is minor compared to where I was only four months ago. God Is Great!

I haven't been on the computer for a couple days so when I logged back on to check blog updates I see inspiring and heartbreaking news. It makes me stop in my tracks and say a prayer for the families that are having much harder times than my own. People like myself tend to be selfish when we don't feel good physically or things aren't going the way we want them too. That was me until today. I read about a fellow Cfer who lost his battle waiting for a lung and liver transplant. I also read of the great progress another fellow Cfer is making from receiving her double lung transplant. I'm so happy for her and her family and so sad for his lose to this terrible disease.

Fractures, Rejection, and Home, Oh My!

Well I made it through another surgery with nothing eventful that happened this time, whew! Right now my leg isn't hurting too bad, just a dull ache. Thsnk You Dalaudid, I can barely keep my eyes open,but don't want to sleep. At least the pain is minimal.
One thing that is going to drive me crazy is I can't get out of the bed until tomorrow. You know what that means, a bedpan. Thankfully I'm catherized and hopefully I won't have the urge to need the bedpan for the other, LOL! I have no shame anymore since my transplant :0

Also found out that my last bronch shows mild rejection (A1 is how they classify ie: A1 A2, etc.)which I was told will be treated like the rejection I had last time. Three days of IV steroids then taper down to my regular dose. The preliminary plan is to start the iv steroids on Sunday (cause they want to wait a few days after any surgery). So I'll take dose one on Sun., dose two on Monday, get discharged and take the last dose at the hotel. That is the plan, it doesn't mean that's what will happen. Well, it will give me more to rant/talk about:)

This brings me to the conclusion of my title, going home. Our hopes and plans from the time of transplant were to be able to leave around the first of October. Then it got pushed back to the middle of Oct. Now, it's the middle of November! I'm still hopeful that this time we will be leaving. The Orthopedic docs are saying it won't hold us up. Lets just pray nothing else goes wrong!!!

Bubble Busted!

I try not to talk ugly, but dammit I was ready to go home today. That's not going to happen for another 2-3 weeks. I've had a pain in my left hip for three weeks now. The first week it started hurting I got an xray of the area and it didn't show anything unusual. I was scheduled for an MRI, but it wouldn't be until this past Tuesday (a week later) so I've been walking around on my leg when I shouldn't have been. Turned out to be a stress fracture. I knew it wasn't a pulled muscle because it NEVER gets better. The pain is the same. I have started taking oxycodone to cope with it. I have faith in the doctor's to get me fixed up tomorrow.

I can only say that as many problems that I have had, none of them have involved my lungs (inside the lungs). I had fluid around my lung, but all of the biopsies have been clear. I thank God everyday for allowing me to survive by the miracle of transplant. I pray for the donor's family and am forever grateful for their loved one's generous, selfless gift. I Can Breathe!! Please continue to pray for me. Love To All!

What I've Been Up To

For the past week I have been trying to keep my lungs healthy without being able to do any cardio work. I haven't been to rehab in over a week, but I did graduate so it's not mandatory anymore. I have some hand weights at the apt. and I've been doing a little yoga. My hip has been hurting so bad I don't even want to get up and move some mornings. I decided to start taking the pain pills I had left over from previous surgeries and it has helped. I just don't want to take them for very long.

Today I had another bronch. It went well, thank goodness. That appt. was at 2pm. I also had an MRI appt. today. It was at 10pm. Yes, 10pm have you ever heard of an appt so late?! When we got back from the bronch, we both layed down and went to sleep and set the alarm to get up. When it went off I thought it was morning. I was sleeping good. Philip asked me if I was ready to go and I said "go where",lol. That was my first MRI, it wasn't bad I just got tired of being so still.

On our way back to the apt., we made a stop by wendy's for a frosty, hee hee. I needed a late nite snack. I'll just have to take a little extra insulin to compensate.

Overall I'm still feeling great except for the hip. We are so hoping that we will be coming home soon, like within the next week. It all depends on the verdict of the tests (bronch, mri). I won't know the results till Thurs. when I go to my clinic appt. Keeping my fingers crossed and praying hard that everything will be alright and I can get discharged to go home!!!!!

Today Is My Birthday

Today is a day like any other these days. Sitting around the room, going to dr. appts., or going to rehab. I couldn't think of anything I wanted this year. Everything I wanted I already have. God has blessed me with a wonderful loving family, great friends, and my health. One thing I do want more than anything these days is to be able to go back home to MS. I haven't been home in at least six months and I'm really missing my mama's cooking. I'm missing so many things in addition to my family and friends. I am ready to get back to the life I had to leave behind over two years ago. I was just existing, not living. It is still hard to think about how difficult my life was just 3 1/2 months ago. Thank You God for allowing me another birthday and that is enough of a present for me.

For all of my Facebook family, Thank You from the bottom of my heart for the Birthday wishes! I have felt so much love today!

One More Step Toward Home

Monday I had a dr appt to meet with my surgeon about my wound vac I've been carrying around with me since the beginning of August. In case you don't know, it was for a fluid filled pocket that burst and then wouldn't quit draining. The wound vac helped the place to heal from the inside out and it only took two months!(can you hear the sarcasm.) Well, it is finally healed! No more wound vac, woo hoo! I look at it as one more step to getting back home. The only thing left is my bronch and my dr visit both are at the end of the month. Right now I am dealing with my left leg/groin area. Apparently, I sprained a muscle last week and it has not gotten any better. I skipped rehab several days because of the pain I was in. I have a pronounced limp because of the pain when I walk. I broke down this morning and called my tx coordinator and got an appt with my doc. I got xrays, but haven't heard anything from it yet. She wanted to rule out a fracture because taking steroids makes bones more susceptible to fractures/breaks. I did get some pain meds along with the xray. I took some and even though after taking it the pain didn't really go away, I just really didn't mind it so much, lol. Everytime I get on the right path something else seems to fall apart. I'm still staying hopeful that it isn't anything that is going to keep me from going home soon!!!! I'll keep you posted........

Happy Week

It's been a good week for me. I will be finished with iv meds as of tonight, woo hoo! I've still got the wound vac on, but I hope to get rid of it Monday when I see the doc again. It is almost healed. Also, when I have my bronch on the 26th if it comes back clear, the doc will take out my hickman (the line in my chest to take iv meds). I'm getting closer to going home. I'm trying not to get too excited because it seems like something always happens. I'm just keeping my faith and looking forward to getting back home! I can't think about what "might" happen. I'm still taking it one day at a time and letting The Lord guide me. :)

I've met some more new people here for their evaluation for lungs. I think back to when I was in their shoes and how far I have come in just 3 months. I think about my donor and their family everyday. It was such a selfless act to give someone else a chance at life. I hope to find out about my donor someday. I have yet to write a letter to the family, but I will. I may never hear from them, but I want them to know how much I appreciate what they did. I feel I wouldn't be here today had I not gotten a lung transplant. I Thank God for His Love and Miracles! God Is Great!

More Rehab

Yesterday I started my graduate's class at rehab after a three week hiatus. The day after I graduated I had my stomach wrap surgery, then it was dr. appts., then a week in the hospital battling mild rejection (which has been overcome so don't get alarmed). Anyway, I made it back to rehab and it felt good to be back. Now that I'm a graduate I kind of do my own thing. I still have to do the same four stations, but after the floor exercise I can choose which station to go to next instead of being directed by the staff. I like to do the bike, weights, then walk last. It's nice that I can do it that way now. It doesn't take as long either to do the whole day. I guess because I'm not having to wait for one of the staff to be at a station before I can get started or trying to run down my chart to log my progress. I get there at 12 and by 2:30 I'm done. Before it was 12:30-3:30 and that was taking few breaks. I'm working at my same pace, I'm just on my own. I like it that way. It takes me back to the time when I was independent. I'm slowly getting my independence back. Patience, Patience.

Clinic's Today

Today was spent at Duke clinics. I had two appointments and had to get an xray. The xray was to SEE if the fluid has decided to return AGAIN. It better not. I haven't heard anything from it yet, but I'm sure I will, good or bad. I had a follow up with the doc that did my stomach wrap. I'm done seeing him unless I have problems, whew, one less doc to see! The other doc was deciding when to stop the anti-fungal meds and the anti-viral meds. I've been on them both since tx and I am so ready to be iv free! Even though I'm not struggling for air anymore, I can't help but think of CF antibiotics everytime I hook up an iv med now. I am happy to be alive and I don't want to waste any of it complaining about things that can't be changed. Things that are to my benefit. I know I received a miracle and I am thankful everyday that I am here today. I am on the downhill slide and I will get home soon. I'm keeping the faith!

Another Sleepless Night

Thank goodness the last dose of IV steroids is done. I don't know if I could stand many more nights on 3 1/2 hrs sleep. I got some good news today, well potentially good news. I may get to go home today. I got an xray early this morning and am waiting for the doctors to look at it and decide if the chest tube can come out. The fluid has quit draining any significant amount so maybe the tube can go! One less hose to carry around. I still have the wound vac for the fluid leak. It's slowly healing, but last night the wound vac dressing had a blowout and apparently the nurses here don't dress these things very often. The new dressing lasted about two hours and it was leaking again. I ended up trying to patch it myself to no avail, so I just went to bed looking like I had peed my pants =D

After talking with my dr. this morning, it's looking like I will be here till around the first of November instead of mid October like originally planned. It's just minor setbacks. Doc just wants to keep a close eye on the fluid situation to make sure it doesn't come back, AGAIN! I can live with an extra couple weeks.

The second xray looked good so the doc decided I could go home. I finally got out of the hospital about 8pm tonight. I had to wait and take my nightime meds at the hospital because the company that makes the home ivs won't be able to make them up until early in the morning. I'm just glad to be out of the joint. I have another pill to take now in addition to the 25+ I already take everyday. I'm now on high blood pressure meds because of being on such a high dose of prednisone. It will be temporary, just until the steroids are tapered down. What's another pill at this point? Let's just hope the fluid doesn't come back and I can stay on track to go home in November! God Is Great! I am a blessed woman. I will stay as long as it takes. I'm just loving life and Love To All!

It's 4:15am Why Am I Awake?

This isn't a trick question, this is what happens when the doc ups the dose of steroids in order to get the fluid off from around the lung. Don't ask me how it does it, it's just supposed to work. I was warned that it might make me wired, but I've been up since 8:30am Tuesday morning and it is now 4:15am Wednesday morning. Good Grief I'm not even close to being drowsy. I'll never keep my eyes open tomorrow, I mean today, lol. I went walking around the unit I'm on at 3:00am. I walked a mile hoping that would tire me out. It only made me hot. I'm pretty sure I'll start getting sleepy soon because it won't be much longer till they start coming in here for labs, vitals, meds, docs, respitory, etc. It won't stop for hours. Thank Goodness I start a taper of the steroid dose after tomorrow or else I will sure enough be a dead head.

Here's a thought: When you are a patient in a hospital have you ever had to share a shower with a big brown roach? Aren't hospital's held to a higher standard of sanitary conditions?
I was showering around midnight and as I was rinsing I happened to look down and there was this huge roach by my foot. It was a good thing it didn't crawl onto my foot or I might have ran out into the hallway naked! I managed to get out without exciting the creature and dried and got dressed. I then opened my door to find someone to come and exterminate it. Luckily, there was a guy sitting at a computer and he asked if I needed something. I was like "yeah, can you come kill this big brown roach in the shower?" He had one confused look on his face for a minute, but then realized I was serious. He grabs a pair of gloves and walks up to the shower and picks the roach up and leaves with it. Ewwwww!! Creepy Crawlies I can't stand! I'll be paranoid now. Doesn't matter anyway I suppose, I'll be awake to see them coming :(

Bright Sunny Day

It is so pretty outside. Sunny, no clouds, and I hear the temperature is nice. It would be even nicer if I could be out there in the sun, but noooo I'm still in the joint. The fluid is still draining. It has slowed down even more so maybe tomorrow will be the day.

Now I want to rant on getting my Nissen stomach wrap. Sure I understand that it will prevent me from having acid reflux, but no one told me it wouldn't prevent me from having heart burn. Also, I can't eat half of what I could eat before the surgery. If I do, my stomach just hurts! I'm hoping this is just because it is still healing since it's only been 10 days since surgery. I'm just stir crazy and ready to get out of the hospital!!!

A Room With A View

After being in Duke hospital for the fifth time since June, I finally got a room with a view. I can see the street in front of the hospital and a great view of the blue sky. It makes it feel more like a hotel room rather than a cell, oh I mean hospital room, lol. Also, the room I'm in is one of the bigger ones. It's not a suite, but it's comfortable. When I was in the hospital last week for my stomach surgery I think they put me in a closet. It was the smallest hospital room I had ever seen.

As far as the fluid around my lung, it's still draining but not as much. It's too soon to know when I may get out. Just have to be patient and let the drain tube do it's thing. I've got to get out of the room today and walk around. One thing about being in the hospital at Duke, they encourage walking. I'm actually looking forward to getting back to the fitness center. I graduated over a week ago and haven't been able to go back yet. I've worked hard to build my strength up and I don't want to lose any of it. I'm hoping to be out of the hospital by Tuesday, but hopefully Monday. Love To All!

Going Back In The Joint!

Unbelievable! I had the stomach wrap surgery last Friday and got out of the hospital on Sunday. Tuesday I had clinic and the fluid is still around my left lung so the dr. wants me to come into the hospital and have a chest tube put in to drain all of the fluid. I'll also have another bronch to make sure my lungs are still clear. I've got to be at the hospital bronch suite at 2pm Thurs. They will place the tube and do the bronch in the same place, then I will be admitted. I don't know how long how I will have to be in the hospital. Probably through the weekend. Another weekend in the joint, just great. I know I am on the downhill slide, I'm just frustrated that I seem to take one step forward and three steps back. I'm just ready to go home. I have two friends from rehab and I had my tx before them. Because they haven't had any setbacks, they are going to be released to go home at the end of this month. Don't misunderstand me, I'm happy for them. I'll just be glad when it's my turn. I know I am still blessed, I would not be here if I were not. I know The Lord would not put more on me than I can handle. I feel I am facing these obstacles because the Lord knows I am strong enough to overcome this. I'm sure I've said this before, but this too shall pass. I Love My Lord and I am on this journey with Him carrying me through it all. I'm going to be home soon enough, Whatever it Takes. I'll take it one day at a time. Love To All!

Getting out of The Joint

I am definately getting out of the hospital today. It'll be this afernoon before they get the paperwork done, fgures! Some good news is I'll get to sleep in peace and I haven't had a pain pill in over 12hrs. It seems like I always get a room across from the nursing station. Last night it wasn't the nurses making noise, it was the person in the next to me, well it was the family that was in the room with him. I don't think they had ever been in a hospital setting or they would know to BE QUIET. It wasn't late so my sleep wasn't disturbed, but other patients may have been asleep. They were laughing and talking loud like it was a family reunion.

More good news, I may get to go home by mid October. It isn't for certain, in case something else happns ;). I have faith in God and so far everything has run smooth. I'm still taking it one day at a time. Love To All!

Still in the Hospital, Dangit

This is short, but I wanted to let everyone know that I didn't get out of the hospital today. It's almost four in the evening and I haven't seen any doctors that make the decision about when to let me out. I still feel good, just sore from the incisions, and I wss looking forward to a quiet nites sleep. Just because it's the weekend the doctor's shouldn't ignore their patients. Oh well, I'll hope to get out tomorrow, but until then I'll continue to eat my broth, jello, and fruit juice, oh boy! Love To All!

Surgery Sucess

I'm stil here and doing great after my stomach wrap surgery. I haven't been in too much pain like I thought I would be. I'll have five more scars when the latest holes heal. It'll be worth it if it keeps acid reflux from contaminating my lungs. I'm so thankful that I'm alive an able to breathe!

A downfall to this surgery is I'll be on a liquid diet for a week, then soft foods for a few days. The doc said after that I could slowly incorporate regular foods into my diet. Here's a question, if anyone has been on a clear liquid diet, what types of things did you eat. I know things like broth, protein drinks, etc. I'm wondering if anyone invented something that tasted good and gave nececcary calories and energy.

I'll have more to update later. I haven't seen any doctors this morning, of course it is only 8:00ish. I'm hoping to go home today. I'll update again when I find out for sure. Love To All!

I'm A Pulmonary Rehab Graduate!!

Woo Hoo! I finished my 23 sessions of rehab today. I will still go to the center until I leave for home, but I will be on my own more without the instructors guiding me what to do next. I'm excited because Philip can go with me too. The only bummer to it all is after my surgery tomorrow I won't be able to lift more than 10lbs with my arms and legs. I've worked my way up to 75lbs on some of the leg exercises. That irritates me because the rehab center said it would be that way for six weeks.

Sooo, EARLY in the morning I have to get up to be at the hospital by 5:30am for the stomach wrap surgery. It isn't scheduled until 7:30am. At least I won't have to wait too long and I'll get to go back to sleep ;) I'm not looking forward to staying in the hospital overnight, but this too shall pass. Then I'll spend a week on a liquid diet. Next I'll slowly ease back into regular food starting out with soft foods. It'll probably take a few weeks for my tummy to get back to normal.

I went to clinic today and everything looks good except I have fluid around my left lung AGAIN. I don't feel like I'm breathing worse, but my PFT's (breathing test) show my numbers have dropped. I feel like it is the fluid. It was actually there last week too and doc said it was a little better this week so she isn't going to do anything for now. I go back to clinic Tues., so I'll find out what she wants to do next.

That's all the news I have for now. I probably won't feel like blogging, so I hope everyone has a Great Weekend. Love To All!

Nice Long Weekend With No Surgery

I was supposed to be in the hospital today recovering from my stomach wrap surgery. Turns out Friday when we went to the clinic to do the pre-op screening, we were actually supposed to be at the hospital. We arrived at the clinic at 7:30am and found out we were supposed to be at the hospital at 5:30am. Apparently, the surgeon's secretary tried to call me, but the number she had was our home number in Mississippi. I know the hospital has my cell phone number, good grief! So the surgery was cancelled and re-scheduled for next Friday. At least I got the pre-op done so I'll just go straight to the hospital.

I decided to ditch rehab Friday. I was so aggravated having to wait another week that I just wasn't in the mood. The rest of Friday through today has been a great down time, although I have been walking around the hotel at least a mile so it's not like I have been a total couch potato. I still want to exercise my breathers. I'll graduate from rehab next week. I have completed 20 of the 23 sessions so Tues., Weds., and Thurs., will complete my mandatory sessions. I'll still have to go to rehab, but I will have more freedom to exercise in the order of each station that I choose. I was hoping to be home by sometime in October, but with the surgery scheduled for Sep. 10th and recovery will take 6 wks; I don't know when I'll get home.

I'm just taking it one day at a time and am concentrating on getting stronger every day. I hope everyone has a Great Labor Day! Love To All.

A Beautiful Day!

If you read my post from Monday you read about the incident of my car getting broken into and the Gps getting stolen. This morning while getting ready to go rehab, a Det. called me from Durham Police Dept. and said they had located 4 Gps units that had been pawned. He asked me for some more information about the Gps and said he was going out to the pawn shops to gather info. from the alleged stolen Gps'. Later this afternoon while I was at the fitness center I received a call from the Det. again and he had located our Gps and wanted to know how he could get it delivered to me, since we were from out of town. That was nice because without a Gps we may have never found the police dept., lol! I told him I was at Duke's fitness center and he said he was less than ten minutes away and he would bring it to me. He was a very nice officer who shook my hand when we met and shook it again when he left. Thank You Det. B for a job well done! All I had to do was sign a piece of paper showing that I had claimed my stolen property and away he went. It was awesome that not only the Gps itself was recovered, but the windshield mount, and car charger was also with it. I asked the detective if they knew who did it and he said "oh yes, and they will be arrested". They broke my window and stole my Gps and pawned it for $25.00. The gps cost $150 and the window replacement was $240. I'm thankful we got the gps back, that saves us another 150, but to do all that damage, physically to my car, and mentally to my mind for $25 bucks? That's pitiful.
The replacement windshield came in and was installed. It looks great. Lets just hope no one else gets the bright idea to steal other people's property. If they do, they won't get anything valuable out of my car because anything of value will be inside my apt. with me or in my purse if I'm out and about.
Rehab went good today too. The weather was beautiful so it was a beautiful day. It also turned out to be a beautiful day to my mind. It's nice to have things turn out great!
Word to a thief in Durham: Better think twice cause the Durham PD will find you and the goods you stole!

Keep Thinking Positive Thoughts

I haven't had anything really interesting to post lately. I've just been going through the motions, dr appts., rehab, grocery store, etc. same ole same ole. Well, this past Saturday me and hubby decided we were going to go to the movies Sunday afternoon (when there are less people in order to avoid a crowded theatre). Great Idea! I was looking forward to it. At 7:30 Sunday morning the front desk called, but I didn't answer. I checked the message when I got up about 9:00 that informed me I needed to contact the front desk. Turned out my car had gotten broken into early Sunday morning about 4am. They broke out the front passenger window and stole the Gps. They also rummaged through the glove box and the console, but didn't get anything else, thankfully. I've had an experience as a child with our car getting stolen and I'm very thankful they weren't interested in Grand Larceny. We weren't the only vehicle that was hit. There were three others in the appt. complex and one in the hotel right beside this place. They only took the Gps from each vehicle. It won't happen again! We bought another Gps and it will go inside when we go inside, whether it be at home, the mall, the grocery store, walmart, whereever! It won't be left in the car for sure. Luckily we are located close to an automotive shop that is going to have a replacement window tomorrow morning. About the movie, I wasn't in the mood after seeing my car violated and dealing with the police and filing a report. We ended up going to walmart for a gps and groceries, then hung out in the apt. the rest of the day. Bummer of a day, but it could be worse!

On another note, I enjoyed having dinner with my transplant family this evening. Three nights a week the apt. serves dinner and we all get together and have a great social. It's great having people to talk to that know what you are talking about and are going through. I also went today to see the doctor that is going to be doing my stomach wrap or Nissen Wrap. This is a surgery Duke is doing based on research that shows people with acid reflux could easily aspirate into their new lungs causing rejection. This surgery will prevent that from happening. I'm not looking forward to it, but I'm ready to get it over with. Surgery is scheduled for Friday. One more step on the road to getting back home!!!

I Wanna Go Home

Tomorrow will be my 8th week post transplant. I'm doing great physically, but mentally I am missing home soooo bad. I know I'm on the downhill slide from here, but you know how you feel after being sick and you start to feel back to normal? I feel better than normal. I'm feeling good and am ready to get back to my life! I like Durham, but even if we were here on vacation I would have been ready to go home long before now, lol!

Another bummer to my phychie is the fact that I am still on IV's and two different nebulizer treatments. The fun part is that I get to wear a mask instead of the mouthpiece so I can inhale it through my nose, ha ha, not fun. My sinuses are where the "bugs" are now, but thank the Lord my lungs are clear. Got to keep the bugs out of the lungs!!! Must get rid of them!!The picture above shows me with my combat gear. I just had grand visions before tx that afterward I wouldn't have to worry with iv's and nebulizers every day! I know some people have to use them for a month or so after tx, but mine is going till October 1st. I know that for sure. The one phrase I repeat to myself when I get in this mood is, "I Can Breathe!" That is always the main concern.....Love To All

Dang! Didn't Want To Hear That

Today started out good until I met with the two dr.s I had appointments with. The infectious disease dr. discussed with me the 2 or 3 funguses and a virus I had right after tx and the plan from this point to keep them most of from coming back. As of now, I only have my usual pseudomonas in my sinuses, but I also have one fungus growing in my sinuses too. It's no big deal right now. My concern is when the dr. stops the meds they are giving me to keep the "bugs" away are they going to come back? One of the fungus is resistant to everything, but seems to respond to two of the meds I'm taking. This fungus I found out today can potentially be fatal. The dr. said she wants me to stay on all meds that I'm currently on until Oct. 1st., then we'll see about safely taking me off of them. Meaning because my immune system is nill, I am at my most vulnerable right now as far as catching things or things that were in my body that were dormant might decide to come alive again without the iv meds.
The appointment with the second dr. was my tx surgeon. He looked at my fluid pocket, but didn't do anything new that hasn't already been done. The flow of fluid seems to have FINALLY slowed down. He just repacked it and wants me to return in two weeks. Ugh! This means I'll have to wear the vacuum pump till then. Now I know what a "monkey on my back" feels like. Annoying!

I'm not going to get discouraged. I'm still blessed to be here. I am thankful everyday when I can get out of bed and not have to go to the nebulizer to take a broncho dialator and wear my Vest before I can even begin to function. I am thankful that I can walk and talk, walk two miles without having to stop to catch my breath, to not cough anymore, to shower and get dressed to go out without losing my breath. I am most thankful to God for guiding me in making the right decisions in my tx journey. I am thankful for many more little things, but I am truly grateful and thankful to the person that selflessly decided to donate their organs so that others may live. I will one day write a letter to the donor's family and hope to hear back from them someday.

As far as the little problems, I'm taking them a day at a time. My lungs are doing awesome still and that is the main priority. Love To All!

Little Problems, Big Blessings

This week has been great! I have felt better than I have felt in YEARS! I may have never felt this good actually, lol. My rehab sessions are finally starting to show results. I have more energy and am stronger. It's about time. After tx, we have to finish 23 rehab sessions before we will be discharged. I have completed 15 of the 23. This is an awesome accomplishment because I'm over halfway there, except I won't get to go tomorrow because of a scheduled Bronch and Thorocentesis(sp). Monday I won't get to go to rehab because of two doctor appointments. Of course one of those appointments I'm looking forward to because I hope to find a solution to the fluid pocket that won't quit draining. Tuesday, no rehab, I have clinic which takes most all day. Wednesday, no rehab, I have a test to do that takes about four hours, which fringes into the rehab session. The four hour test consist of me eating eggs with a tiny bit of radioactive dye in them so they can see how fast my stomach empties. I'll eat the eggs then wait. They will check my progress every hour to hour and a half. Overall it'll take about four hours. One last doctor I'll have to see is the GI doc. He will be the one to decide if I have to have the Nissen stomach wrap surgery to prevent acid reflux. This will be a laproscopic surgery and I'll have to stay in the hospital about three days. I don't know if I'll have to have this surgery or not, but most likely I will. One of the previous tests showed I have acid reflux, soooo I'll likely have the surgery, dang! Oh well, I won't let any of this discourage me. I am feeling great and my new lungs are working great. With all the little things that have gone wrong and other problems that will have to be addressed (stomach wrap), I am still so Thankful to God that I have been given this precious gift of life.

What A Long Day

Today started off with a clinic visit to get labwork, xray, and pfts. This took about 1 1/2 hours. Then me and Philip grabbed a bite to eat and afterward he took me to the fitness center. After I finished there at 3:30, it was back to the clinic to see the dr. My appt. was at 4:00. The nurse informed me that my doctor was running behind and it would be closer to 5:00 before she could see me. Well, at 5:30 I got called back and into a room. When I finally got finished with the doctor, we made it "home" at 7:30. I have never been in a doctor's office till 7pm. It was like a ghost town on our way out the door, lol. Now, here is what was found out from that doctor visit. I have fluid around my left lung AGAIN! They are going to schedule another tap they call it to drain the fluid off. Doc also wants a bronch next week to make sure it isn't rejection causing the fluid. The fluid taken off before did not show any rejection, praise the Lord! Hopefully, this is just me being one of the "unlucky ones" that this happens to sometimes. As long as it's not rejection, I can deal with it. Dr. told me also that she may put me in the hospital and treat it as rejection to get it to stop. No definate on that yet. Another thing is the fluid pocket, it isn't getting any better even with the vacuum pump on it. It is draining just as much today as it did when they first hooked up the pump. The plan now is for my doctor to discuss it with the surgeon to see if there is another alternative. That is all of the bad news. The good news is that I got part of my staples taken out today and all my stitches from the chest tubes. Part of the staples were left because the skin hasn't healed as much as the doctor would like. There is still quite a bit of scabbing that isn't ready to come off. Also, even though my xray today showed fluid around my lung, they are clear of any fungus or pseudomonas (this is a bacteria I had in my old lungs for most of my life and it is still in my sinuses which threatens my new lungs.) So far my new lungs are in great shape and clear of any "bugs" and I plan to keep it that way!!!! I am so blessed to be able to continue to live and to live being able to take a deep breathe of fresh air. God is Awesome! Love To All!

Still Here

I guess you are all wondering what's been going on with me. Since getting out of the hospital, nothing exciting has been happening. Well, maybe that isn't exactly true. I had fluid around my left lung and had to have a thorocentisis(sp.) which is a procedure where they put a catheter in your back and drain the fluid out. This is done with a local aesthetic to numb the area which made me a little nervous, but it wasn't as bad as getting a picc line in my opinion. Lets see, I had to see an ear, nose, and throat doctor to make sure there wasn't anything unusual going on in there. Luckily everything was good. I also have had to deal with the nurse coming three times a week to change the dressing on the fluid pocket. Don't get me wrong I like my nurse, she's awesome! As far as everything with my body, my lungs are doing great! I've finally been able to go to the fitness center consecutively and I can feel myself getting stronger. That's about all that's been going on, except for the weekly clinic visits. I feel blessed everyday that I wake up and can breathe without oxygen and being a slave to the nebulizers. I have not been discouraged about the setbacks I have encountered. It is just bumps in the road of my journey. I'll be back soon with an update from my latest clinic visit this week to find out if anything has changed with me. Love To All!

I Miss My Baby Dog

I looked at pictures of my Doberman, Diamond today and just started crying. I don't really know why because she is staying with a friend and is being taken care of. I just miss her. I havent' seen her since the beginning of May. She may not even remember me anymore when I get home. We've had her since she was 6wks old. She has never known anyone to take care of her but me and Philip. She's old now. She was 10yrs old back on Aprul 3rd. When I got sick, I felt so guilty because I wasn't able to go outside with her because of the heat. She doesn't do well inside because she wants to sit in my lap like she did when she was a puppy, lol. She does sleep in the house at night. She has "Diamond's House". Most of her life my daily ritual was to go outside with her and brush her, pet her, just love on her. She expected it and would bark this high pitched bark that would indicate to me "come outside mama". As time went on and I didn't go outside anymore she finally stopped expecting me. I was feeling like a failure to my family. Not only Diamond, but the rest of my family. I wasn't able to contribute anything, not even to our family pet. When we get home I am planning on getting her back. I think Philip was planning on giving her away permenately, but I just can't do it. I'm the only mama she's ever known and she loves me more than herself for sure. I can't abandon her. She's my baby! I'll be able to take care of her again and we can even start an exercise ritual now that I can breathe! I Love My Diamond Girl and I can't wait to see her! I know this has nothing to do with how I am physically, but I just had her on my mind and needed to vent. Thanks for listening.

Nocturnal Thoughts

Saturday I got the vacuum pump applied to the fluid pocket and it's no big deal. I just hope it works and I don't have to have surgery. I slept most of the day because Friday night they were in and out seemed like every 10 minutes. Surprisingly, I wasn't very hungry today because I can get pretty grouchy when I'm hungry. They wouldn't let me eat in case I had the surgery. Well around 3pm this afternoon, they decided on the vacuum so no surgery, I could eat! I wanted a salad and Philip went and got me one. It was so good. I napped again after eating and now it's after 2am and I'm awake! I'll have my sleep pattern all messed up when I get out of here. I hope I get out of here tomorrow, but I'm not counting on it being the weekend. Oh well, it'll happen soon and Thank Goodness my lungs are doing great! I think I'll try to go back to sleep now. More updates later.......... Love To All!

What A Weekend

This isn't a happy post because I am in the hospital as I type this. After all my running around this week (see previous post) I still end up in the joint. I have a fluid filled pocket on my right groin area. The reason it's there is because my heart stopped when they put me under anethesia so they had to do some kind of catheter in my groin up to my heart to get it beating again. Thank goodness it was successful. The dr. explained that possibly one of the lymph vessels got cut during the catherter placement and instead of it repairing itself, it decided to fill the space from the inscision with fluid. It didn't drain for quite a while, then Wednedsay is started draining out, bad! I went to the clinic and they put guaze and tape over it and I went on my way. The next day, I went to drain it down again and it ruputured and fluid sprayed across the floor. It's nasty I know, but it shocked me. It didn't hurt, thankfully. Well, I had more appts. on Friday so I showed it to the dr. and that's when they decided I needed to be admitted. One dr said surgery and the other wanted to try this vacuum machine that keeps the pocket compressed and any fluid will be drained out. The bad news is, it could take up to a couple weeks for it to work and if it doesn't work then I'll have to have surgery anyway. Geez! I can't get a break, but I'm thankful that my lungs are doing great! I can deal with the minor problems as long as my breathers are doing good. Love to all!

What A Week!

TGIF! This week has been sooo busy. Let me recap, Monday was my first Bronchoscopy. This is where they sedate you and run a camera up your nose or through your mouth into your lungs and they take a biopsy of the lungs to check for rejection. Afterwards, I couldn't go to rehab because of the sedation. Tuesday as you can read from my previous post, was clinic day. On top of medication adjustments, I have fluid aroung my lungs, and I have a fluid filled pocket on my groin that I have had since I got out of the hospital and will probably have to have a drain tube put in to make it go away and stay away. I also had to have a CT scan of my sinuses on Tuesday. I did not go to rehab Tuesday either. Wednedsay, I actually made a full day of rehab and no other appointments, except for the nurse that comes to give me one of my anti-rejection iv's but she comes later in the afternoon. I finally got to relax a little. Thursday was another rat race. It started out with an appt. at the clinic at 9:30 to get a tube stuffed up my nose to do a 24 hr recording of my stomach acid to see if I have acid reflux, yuk! It's uncomfortable and I'm thankful it is only for 24 hrs. Then we grabbed a bite to eat and headed to rehab. When I exited the car and we were walking to the building, I noticed my pants leg was wet. Well, turned out the fluid filled pocket had run out of room so it started to drain. Thank goodness it was clear liquid, but still nasty. I had called my transplant coordinator the night before about the fluid pocket and she called me back while still at the fitness center and said to go to clinic and let my doctor look at it, so off we went. I didn't get any rehab in Thursday either. One day of rehab this week will be it! If every week was as busy with appointments as this week, I would go Awol on this place. Geez! Today, Friday, I've got an ultrasound of my left arm because it is swollen still and since I've had blood clot in the past in that arm, my dr. wants to rule it out. First thing I'm doing before the ultrasound is getting this tube removed from nose! Yay! Then at 3:00pm I have to go to the hospital and have the fluid removed from around my lungs, not looking forward to that one, but I gotta do what I gotta do. Anyway, no time for rehab today either. I hope next week is a better week.

Post Op Visit #3

I had my 3rd post op clinic yesterday and it basically took ALL day. First it's labwork, then xray, then pft's. Afterwards there was a gap between the labs and seeing the doctor, like 4 hours. Me and Philip went and got some lunch and we went to visit a friend of ours from the rehab program, Judy. She got her transplant last Thursday and she is doing great. I still have these darn staples in and found out they will stay in a total of 6 wks. I found out I have some fluid around my lungs. This is nothing to be alarmed about, it is probably from the trauma my body has gone through. The Dr. is going to schedule to get it drained off sometime this week. What fun. Other than that, my labs and pfts were good. I'll update more later.

2nd Post Op Clinic Appt.

What a day! It started with going to clinic at 10:00 this morning and getting labwork, xray, and pft's. This is standard procedure. Afterwards, I went to the Center for Living for my rehab session from 12:30 till 3:30. Finally, I had to go back to the clinic at 4:00 to see the doctor. I can honestly say, I am tired, but I could tell today at rehab that I am getting stronger. I was able to get up from the floor exercises without the aide of a chair, which is a great accomplishment. So far so good with the transplant. It is so great to be able to breathe!

To The Mall

Yesterday me and Jess went to the mall and I found out just how out of shape I am. I was breathing fine. The mask I had on was annoying, but hey, no choice there. We weren't gone long, but the simple act of walking tired me out. It was my legs that couldn't keep up, lol. The physical therapists say that is the number one complaint after surgery is weakness in the legs. It is getting to be frustrating. I haven't fallen down anymore and I can step up and down from a curb slowly and carefully. I've got to remember to take it one day at a time and be patient.
It felt good to get out even for a little while.

Weekend Thoughts

I have to say I am truly blessed. I feel better and better everyday. I'm looking forward to getting these staples out and I'm hoping that happens at my clinic appt. this week. My legs are getting a little stronger thanks to rehab. I had a weekend session yesterday to catch up from missing a week after surgery. Most of the time it's only Mon. thru Fri. I'm glad to have Sunday off. Jess, my step-daughter, my daughter!, is here visiting for the week. I think we'll go to the mall this afternoon. Don't worry, I'll wear a mask and I'm not shopping all over the mall, just a select few stores I want to go to. I don't want to tire myself out trudging through a mall, lol.
It's still amazing to me how I get up each morning now and I don't cough, I don't get short of breath, and I don't have to do a nebulizer treatment before starting the day. I never knew breathing would be so awesome. That may sound ridiculous to some, but for those like me who struggled to breathe, being able to breathe is like WOW! I can walk and talk at the same time now without stopping to catch my breath. I can get dressed, shower, and fix my hair without having to stop to catch my breath. God has truly blessed me and I am thankful everyday.

Pulmo Rehab

It was back to the grindstone today. I went to be re-evaluated to get back into the program. It is mandatory that after transplant, all patients have to complete 23 sessions of pulmo rehab before being discharged by the doctor. It felt good seeing my pulmo friends again. Some were out due to their transplant, woo hoo! yay for them! They'll be back in the program soon. I am just glad to be working on getting my strength back. It's crazy how surgery can make you so weak!

1st Clinic Appt. Post-Op

Yesterday I had my first clinic appointment since surgery. It took most of the day, but I had to get labwork, xray, pfts, and see the doctor. I had many questions and my doctor patiently answered each one. It felt strange not knowing what was going on with my body and having to ask "is this normal". I'm so used to knowing that I just tell the doctor what I need. It is a whole new world when it comes to my health, but apparently I'm doing everything right, so far.

Swallow Test Follow Up

It isn't uncommon for people who have a lung transplant to have trouble swallowing after surgery. Partially due to the tube down the throat for many hours along with the new lungs gaining strength afterward. This is the way I understand it anyway, so if I'm wrong forgive me. Anyway, I was one the more fortunate people because I only had to have a feeding tube up my nose for a week and some people have to go home with a feeding tube in their tummy. While wearing a feeding tube, you aren't able to eat or drink anything by mouth. Can you say cotton mouth? While I was in the hospital they did a swallow test to see if the food and drink was being ingested into my stomach and not into my new lungs, without my knowledge. See when the new lungs are attached, the nerve below the cough reflex is cut and you won't know that food or drink is going into your lungs. I don't understand it either, but it will lead to rejection and I certainly didn't want that to happen. I semi-passed the test meaning I was able to drink nectar thick liquid and eat chopped/soft foods without it getting close to my airway. This has gone on since I left the hospital, but it finished today! I went for my followup swallow test and I passed, meaning I could swallow anything, thick, thin, etc. without any problem! Oh Praise The Lord! I can eat good food again! I don't think my stomach could handle many more nectar thick liquids. There is no way to make a drink good with thickener. When we left, me and daddy went to Bojangles and got chicken for lunch. Then to chik-fil-a for vanilla milkshakes, yum! Later this afternoon we snacked on a watermelon that was brought to me all the way from my home state. Great Food! I'm stuffed.

Changes in Time

I have these brand new lungs and can breathe incredibly well; I hope to get caught up on my rest this weekend. The week coming and all following weeks will be busy busy. It'll be back to rehab next week, in addition to clinic visits. I'll be doing all of that while juggling an iv medicine regimen. It's a bit overwhelming, but I'll make it through. It was a bit of a bummer when I got bombarded with iv meds at the hotel, but they won't last forever. I am most looking forward to getting my strength back and not hurting so much anymore. One day at a time, I know, I tell myself that everyday. Today we want things NOW and this isn't something that is going to happen overnight. To get up in the mornings and not have to be a slave to the nebulizer meds to open up my airways is a wonderful feeling. I don't cough anymore except when I make myself. I'm still making sure I clear the airways so no bugs will settle into my new breathers. It's going to be a whole new life once I get healed up and able to go back home.
I have to thank my donor and donor's family. I can't imagine the hard decisions that have to be made at a time of loss. Please consider being an organ donor. You could be someone's miracle. God Is Great!

Transplanted and at "Home"

I know a lot of you have been wondering about me and why I haven't updated my blog myself in so long. Honestly, I didn't even turn on the computer in the hospital. I was too tired by the end of the day. I don't regret choosing Duke as my transplant center, but they are serious about getting up and moving as soon as possible after surgery. I walked 3.5 miles one day around the floor. It felt sooo good to be able to do that without oxygen up my nose! It's hard work, but it will pay off when I'm healed. I was so thankful to be back at the hotel/"home" yesterday. To sleep uninteruppted was a blessing in itself. I don't think me or Philip even moved once our heads hit the pillows. Today has been another day of rest and learning about the new medicine regimen. When I first saw all those pills I was thinking "I'll never figure this out", but with patience and a little organization it's not too bad. I'll get my rest caught up soon and get my strength back. I didn't realize how weak I was until I went to step up on the sidewalk at the hotel and my leg wouldn't support me and I went to my knees. It scared me, but Thankfully I didn't fall onto my hands. I don't know if I could have stood opening up incisions. Now I have two scraped knees in addition to all the other scratches, holes, bruises, tape and iodine residue left on my body.
I'm so Thankful to be alive. It is amazing to be able to breathe. I am very blessed and I want to Thank Everyone for your love and prayers. I want to Thank my baby sister, Melissa, for keeping my blog up to date. She is an awesome woman! Please continue to pray and I'll keep you posted of how things are going from this point forward. What a journey I'm on!

Timeline of events

I thought I would put a timeline of how things went on the day of Pam's surgery. I feel funny calling her Pam because a lot of the close family call her Wilbur, and others call her Lu or Lu-Lu. So you'll know who I mean if I call her anything other than Pam. So on July 1st 2010 she got the call for her double lung transplant. She was already in the hospital at Duke for a tune-up as she calls it. She sent me a message that day and told me she got the call. I couldn't wait to get off work to try to talk to her before surgery. I was so excited when I found out she wasn't in surgery yet. We chat all the time on Blackberry messenger, but I wanted to hear her voice. Honestly not knowing if it would be the last time, even though I couldn't bring myself to say those words at that time. So we talked for about five minutes, and I was peppering her with questions about how she felt, what was going on, etc. She was so calm. She said she was nervous earlier but had gotten over it. We both figured her nerves would kick back in as she was being wheeled into surgery. I told her we'd be in touch with Philip and would see her soon because we had already planned a trip up there that weekend. I told her I loved her and she said she loved us too and to "Kiss her baby for her." She always says that about our son Joey.

So here's the time and text messages that I received from Philip. I forwarded them on to a list of people and put an update on Facebook each time.

July 1st
3:15pm-Checking in for surgery

4:16pm- Took her back to surgery

6:09pm- Philip called me. He said he'd just talked to the dr. Her heart stopped while they were trying to put her under anesthesia. For a moment I thought he was calling to tell me my sister had died. He caught his breath and said that they got her back and the dr. was trying to decide whether or not to even continue with the surgery. At this point they hadn't even made an incision. They also said they weren't sure how her brain would be affected from coding. I had to call our Mama and tell her. That was hard. She held it together while we talked, but she later admitted that she fell apart after we got off the phone.

8:11pm-Everything going as expected

11:36pm-She is out of surgery and doing good. We will know more when she wakes up.

July 2nd
3:29am-I just got to go back and see Lu. She looked good and the nurse said all vitals and everything looked good!! Please keep praying!

3:39am-You can call ICU and check on her. Her nurse is Katie tonight till about 6am.

We talked some in between these times. She was doing good. So far so good. At some point they hooked her to a machine that checks brain activity and they said it looked just fine. What a huge relief!! I had already convinced myself that would be fine. It's not like she wasn't receiving oxygen when she coded.

6:47pm-Lu is doing real good! She is awake, breathing on her own, with no oxygen just room air! They are going to try and take her breathing tube out tonight.

7:59pm-Ya'll aren't going to believe how good she looks!

July 3rd
12:28am- Breathing tube is OUT!!!!!

12:46am- I thank you all for all your thoughts and prayers!!! I really believe that they helped her get this far!! They sure helped me get thru it so far! THANK YALL!

12:19pm- Lu is sitting up in a chair and walking!!

2:06pm-Taking out chest tubes and moving out of ICU!!

7:42pm-She is gonna stay in icu one more nite

That's the last text I got because we had made it to NC by this time. We checked into our hotel Saturday night. I was so anxious to get to the hospital Sunday morning!!

Out of surgery

I just found out that she's out of surgery and doing good. We'll know more when she wakes up.

It's a go!! Update from Melissa

She found out this morning that they had a set of lungs that were a possible match. They told her this afternoon that it's a go!! I'm sure those weren't their exact words, but you get the drift. She finally went in to surgery around 4:15 our time. She is still in surgery as I write this. Philip called me with the first update and said that her heart stopped beating while they were putting her under anesthesia. He didn't say anything else for a second so my mind starts going crazy thinking the worst. He then tells me that they were able to revive her and were trying to decide whether or not to proceed with the surgery. The doctor said this was not the way they like to start a surgery, and also that they were not sure if there would be any long term effects on her brain. They did ultimately decide to go on with her surgery. Our parents are on their way now. Jake and I will be leaving on Saturday. I can't wait to see her! So for now we are all praying harder than we've prayed in a while and pleading for God to have his hands in this surgery and to heal her in the way that only he can. Philip is sending text updates to my phone and I'm hoping to get another one any minute now. It's going to be a long night, but God's grace will see us through it.

Can't Breathe

It makes it difficult for me to make a clinic appt. when I'm not at my usual clinic. I've been having trouble with my breathing since the weekend. Today I almost ditched rehab, but I decided to give my best shot. I called the clinic and got an appt. for tomorrow morning. I don't want to go into the hospital, but I don't see me getting better any other way. Whatever it takes to be able to breathe what little I can I'll have to do it. I felt so bad yesterday at rehab I was praying my phone would ring with the call to get me out of there. It's times like these that I really miss home. My doctor and nurse would have had me come into clinic the same day I called. My mom and dad would be there to take care of me. Philip is doing a great job here with me, but when you're sick you just want your mommie. I just keep holding on and focusing on the big picture and looking forward to returning home a new person. This too shall pass.

Friends

Aside from pulmo rehab, this has been a great week.I had an awesome friend from home come up ,all the way from Mississippi, to see me. We've been friends since first grade. It was great to have her here. We seemed to never be able to catch up with each other at home. I told her I had to move to North Carolina for us to find time to get together:-) She enjoyed herself by shopping and sightseeing while I was at rehab. I was afraid she would be bored because I don't do much of anything, but rehab or clinic visits. The rest of my time is spent recouperating in the hotel, but she enjoyed chilling in the room too. She is a great friend and I hated to see her go. I just look forward to getting back home to see her again and everyone else I've left behind. It's a bummer being up here away from home; especially when I don't feel good and have to endure exercising while feeling like poo. I'm no quitter so I will survive. Thanks S for the visit!!! Can't wait to see you again!

1st Dry Run

I woke up Tuesday morning a little before 7am. Right after I took off my bipap mask and put on my O2 canula, my cell phone rang. It was a tx coordinator who instructed me that I had a potential donor match and I needed to be at the hospital within an hour. Wow! I just got listed this past Friday and I'm already getting a call. I was excited about getting called so soon, but I was reserved to the fact that I would believe it when they told me it was a go. Once we arrived at the hospital, I had to do labs, xray, and had an iv started. They gave me an iv antibiotic, an anti-rejection med, and some vitamin E. The vitamin E helps with the healing process. As the day wore on I started getting hungry, then grouchy, and then my sugar started to bottom out. I was feeling nauseous, sweaty, and clammy. My sugar was checked and it was at 95 so the doctor's would not treat me with anything. I kept pestering the nurse to get the doctor. I felt like crap and was hoping at this point that the lungs weren't good so I could just go back to the hotel and eat. By this time we had been at the hospital for ten hours. Right about the time I getting ready to really show my behind, I got a call from the tx coordinator telling me that the lungs were not a match for me. I was kind of relieved and within ten minutes one of the nurses brought me a coke and a sandwich. She quickly recognized that I was indeed need of something to eat. I found out today that two men that have been waiting for lungs got theirs last night. Breathe Easy Guys and Congratulations! So I survived my first dry run and learned a few things for the next call. Unless I'm told to get to the hospital "now", I will eat before I leave and make sure I have some caffeine to keep that pesky headache away. ;-)

Pulmonary Village

Today I decided to venture to the main building for dinner. I met a nice group of people that are here for the same reason I am. They refer to themselves as the pulmonary village, lol. It's like their own little family and I feel like I joined it tonight. Everyone I have met have been super nice and helpful. When you are in the position I'm in, you just want to pay it forward. I don't mind sharing any information I know. If it will help someone that is facing this journey then I can sleep well at night knowing I helped them cope with it somehow. I have found it makes it easier having friends that you can turn to that know what you are feeling. I have friends and family that I can confide in, but the ones that are tethered to O2 and struggling for air I can turn too also. I turn to them for the support of I made it one more day. Just one more day. Hang in there it will get easier, you'll make it. You're call will come soon. I'm glad I've made new friends. I hope the best for all of us and that we don't have to wait much longer for our call.

Not For Racing

Gotta love the electric cart at Walmart. Today was my first experience in one. It was nice to not have to walk around the store, but that thing is mighty slow. I understand it has to be in order to keep from running over other shoppers, but it doesn't make it any easier when I'm sitting in the seat wanting to do a Fred Flintstone with my foot to speed it up. Geez! I almost took out a display of shorts hanging at the end of an aisle when I put it in reverse and the handle bar caught a pair of shorts as I backed up. It was almost ugly, but I saw it in time and was able to avoid a total teardown of the whole display area. Thank goodness I learned how to drive the thing after that. Anyways, it was nice not to have to exert my energy walking around the store. I may just use one next time I'm in there too. I used to be self conscious about people seeing me with O2 on. Now, I don't worry about anything but breathing. When you can't breathe, nothing else matters.

Mixed Emotions

What a great day that ended on a sad note. It started off only having rehab to look forward too, but at 4:45pm this afternoon I got a call to let me know I was actively placed on the transplant list. One of the tx coordinators called to tell me I have been officially listed. The average wait time at Duke is 21 days and I have a friend who waited only 38 days for her official call. She did have a dry run where she was called, but the lungs turned out no good so she was sent home to keep waiting. That isn't uncommon. I'm so ready for this. I was trying my best to walk around the track today with my rolling walker, O2 tank, and a headband with an O2 monitor wire stuffed in it attached to my forehead; I was thinking there has got to be a better way than this. I can do this rehab as a weak post transplant patient rather than a breathless pre-transplant patient much easier any day. I would rather have pain than no air. Of course we can stop to catch our breath, but it totally wipes me out by the end of the day. I get frustrated with myself. The people at the center are great. They are patient and kind. I will make it through the program, but it is one of the hardest things I've ever done.
On another note, tonight I found out through facebook that my Grandmother passed away. I immediately called my mother to confirm that what I was reading was correct and it was. I knew she wasn't doing well, but to hear she had passed already was a bit of a shock. She was my Dad's mom and has been in a nursing home for many years now. She is in a much better place and reunited with my Grandad. It was a great day and a sad day. I am thrilled that I am on the home stretch to getting my new lungs, but I feel like I should be at home with my family. I know that isn't possible at this point. I just have to believe that God has me in the right place at the right time. I Love my family and they know I would be there if I could. Lets just hope now my wait for the call isn't too long.

Perseverance

I had a bad day today. As soon as I got up this morning I knew it wasn't going to be a good day. When I'm huffing and puffing to get to the bathroom, it isn't a good sign. It seem to take forever to get my morning things done to get ready to go to physical therapy at 12:30. By the time I got ready to go I was so tired I just wanted to go back to bed. I figured I was already up and made it this far, I might as well try. I almost ditched it, but I'm not a quitter. I at least had to try. I made it through the whole session. It was tough, but the therapists knew I wasn't feeling well today so they kept a close eye on me. I was slow, but steady. After therapy was over, Philip came to pick me up as usual and we went back to the hotel room. I crashed for a couple hours under the Bipap machine. When I got up from my nap I had about six 8oz cups of water before bed. I had already drank at least 16oz earlier today. I'm making sure I have enough water in my system from now on and maybe I won't have trouble again, like I've had today. We tend to not think of how important something as simple as water is to our body until it doesn't have enough. I may be up going to the bathroom tonight, but if I feel better in the morning because of it I can handle it. I will make it. I am determined!

Busy Days

Today me and Philip got started early. I had a clinic appt. at 8:00am. I don't like early, but sometimes you gotta do what you gotta do. I saw one of the docs, got labs, and an xray. I found out this is pretty routine everytime I go to clinic so be prepared to stay a couple hours. Ugh! Okay, I can live with that. By the time we got finished with the clinic morning, we had time to come back to the hotel, grab a bite to eat, and head back to Pulmo Rehab. It lasts from 12:30 till 4:30 five days a week. It's not constant exercise so don't think the four hours is all work. We do rest and part of the time is used for lectures on taking care of ourself pre and post transplant. I understand Duke's commitement to exercising before and after transplant, but good grief five days a week! It'll be worth it I know, but I'm using muscles I've never used before, lol! I'm tired today and I may be more tired tomorrow, but I will not give up.

Patiently Waiting

Today was uneventful except for a trip to Walgreens for some supplies, oh, and I did go the hotel's exercise room and walked on the treadmill. I made sure I was in A/C today. As far as the transplant process, when I was discharged from the hospital Friday the instructions were that the transplant coordinator would contact me with my next appointment. I waited till 9:00am today and couldn't stand it any longer so I called and left voice mails to all the numbers I knew to call. Then I sat down to surf the web, drink my coffee, and eat my powdered donuts. A little after 12:00pm I got a call back from one of the tx coordinators letting me know that the transplant team meets every Tuesday to discuss new cases and make recommendations to decide if the patient needs any further tests done before proceeding with listing for transplant. I won't know anything until after the meeting Tuesday morning. The tx coordinator will get back in contact with me and let me know what I will need to do next. It gets frustrating to just sit here and wait, but I understand this is all part of the process. I'm just ready to get on the list! Right now that is the ultimate goal. The wait list here on average is so short that once I get listed it should be less than a month before I get my call. I just keep telling myself good things come to those who wait. Practice patience and Just Breathe.

New Friends

If I had to choose a way to meet friends I wouldn't pick an oxygen tank to get a conversation started, but hey, we're all here for the same reasons. Late this afternoon Philip went out to walk around the complex. I chose to stay inside after my two attempts to go out today proved to be too hot and humid even with 15 liters of oxygen blasting. I can't enjoy the fresh air if I can cut it with a knife. Tomorrow I will resign to walk in the exercise room located in the hotel's main building. I'll be a gym rat, lol. Anyway, Philip wasn't gone long and he returned with a nice lady who wanted to meet me. I'm embarassed to admit I have already forgotten her name, which for me isn't that unusual even before my body was deprived of O2. She is from Boston, MA and is here with her dad. He is currently on the transplant list waiting for a lung or maybe two because of pulmonary fibrosis. She had seen me earlier standing out by the truck with my oxygen tank and knew what I was here for. It isn't a club a person would choose to be a member of but we all have a connection. After listening to her describe her dad and how difficult it was for him to get up and walk just a few feet, I thanked God for the health I have been able to maintain to this point. People that move into a new town generally go to church to meet new people and although I have met a few transplant patients; at Duke people meet at pulmo rehab. The people I have met here tell me "I'll see you at rehab". I can hear the theme to Rocky "Eye Of The Tiger". Lord, Give Me Strength!
My fellow Cyster, Piper, is awake and off the ventilator. She is doing well. Please continue to pray for her recovery. God Is Great!

Taking A Stroll

Today I got my O2 tank and cranked it up to 10 liters and headed out on the paved walkways around the complex where we are staying. It is a really nice hotel complex, made up of numerous buildings with several rooms to each one. My friend Jess is in a building behind me. I have yet to meet her, but I hope to change that tomorrow. I met a nice man and his family on one of my walk abouts. He had his double lung transplant less than a month ago and is recupperating well. I hope to meet him again soon. Of course pulmonary rehab was mentioned and he did say that we would definately see each other there. What is it with this rehab? I'm almost curious to the point that it doesn't scare me anymore. I want to be a part of it too, lol! I don't want to be the outsider, let me in on the action. Those words could come back to bite me in the butt, but for now I just want to know.
It is amazing how I could have been walking and exercising all this time if someone had given me enough O2. My doctor back home tried to keep me from using too much O2 because of my body retaining CO2, but now I have a bipap machine that I use at night to help expel the CO2. When I was in the hospital here at Duke, the physical therapist said however much O2 it took is what I would get in order to be able to exercise and sustain an oxygen saturation in my blood of at least 90%. In the hospital I pushed myself pretty hard and it took 25 liters of oxygen. Today on my stroll, I was taking my time so it only took 10 liters. I still got a little short of breath, but no more than anyone else who was just out of shape. It felt good to not be a couch potato. I am here and determined to give it my all. This is going to be a new beginning for me. The Lord has seen me to it and now he will see me through it. God Is Great!
My fellow Cyster, Piper, that got her call earlier today, her surgery went well and she is recovering as I write this. Please continue to pray for Piper a speedy recovery.

Out Of The Hospital

Oh wow, I got out of the hospital yesterday and slept soooo good last night! I feel like a new person today. I got discharged around 4 yesterday. The day was spent doing more tests. One test I did was the 6 minute walk. This doesn't sound difficult, but when you have a set of bad lungs it can feel like a marathon. I did really well. I pushed myself and that is what the Dr.s want to see. I am determined to do everything expected of me, even the pulmonary rehab. I have never been to pulmo rehab and I hear it is intense at Duke, but I'm up for the challenge. I used to enjoy exercising so I'm sure I'll still be alive at the end of the day. I couldn't believe how exhausted I was last night when we got settled into the hotel. My legs were weak and I just wanted to sleep and this was just from the testing in the hospital. After being in the hospital for the past 6 wks I've got a lot of work to do to get my strength back. Today I am going to enjoy freedom and peace and quiet. No alarms going off, nobody taking vital signs, no labwork, no tests, just me and the hum of my oxygen concentrator.
I am staying in the same hotel as a friend of mine, who had her surgery in April, and is still recovering. She is recovering well with her new lungs, if only her meds could get adjusted so she wouldn't have so many side affects. It's all part of the trade off I suppose. Thank Goodness us CFers are tough going into this battle. Hang in there Jess!
Please say a prayer for a fellow CFer that got "The Call" this morning for her miracle. She has waited long enough. I pray this is her day!!!
I'm going to drink coffee and lounge on the sofa for a while. Ahhh, enjoy the weekend because next week pulmo bootcamp starts, lol! Lord Give Me Strength!

Long Day

Today has been a very eventful day. I am really tired tonight. I wasn't able to get a nap today, but that is okay because I am just glad to have the testing underway with no delays. It's all part of the process that can't be avoided. I was a little disappointed when I found out I am going to have to repeat almost all the tests again that I did back in December. Six months is too long for everything but the heart catherization. Thank goodness. I wasn't looking forward to having another one of those since the first time was miserable. If this is what it takes to get my life back I'm all for it. Bring on the tests!

Let The Testing Begin

We arrived at Duke about 7:00am this morning. Philip drove us straight through last night. We finally got away from the hospital in Jackson around 5:00pm Tuesday evening. Everything went well until we got to Oxford, AL and stopped so I could take a breathing treatment. The nice lady in the curb store set up a stool close to an outlet so I could plug in my compressor to take my medicine. I didn't realize at the time that my portable O2 tank was frozren up and I was not receiving any oxygen. When I did discover it, which didn't take long because I can feel my O2 drop, I panicked. I couldn't help myself. I ran to the bathroom gasping for air and trying to keep from wetting my pants. I know that isn't a pretty picture, but it is a reality when your body needs oxygen. I'm sitting there and Philip bursts into the bathroom, told me he was calling 911 because I was turning blue and really took care of business. He got the nice lady to call an ambulance and they came and rescued me with oxygen and an albuterol treatment. After forty five minutes and refusing to go to the local Oxford, AL hospital, we were back on the road. The medics were awesome. They did an excellent job. Philip was my hero. He remained calm, on the outside, and took care of me. I survived again. Whew! This is happening too much. I will be much more careful in the future, hopefully that won't be much longer and I won't need the O2 tanks anymore. Just another bump in my road of life on my way to get my miracle. God Is Great!

Finally Headed East To Duke

We will finally be heading to North Carolina Tuesday, as soon as I get discharged from the hospital, maybe by lunch? Let me tell you what's been happening the past five days. Nothing but planning for an event that totally fell through today. Ugh! I'm so tired of waiting. The doctors at UMC, where I am currently, can't wait to get me out the door. The Dr.'s at Duke don't want me to come by car, but won't pay to fly me over there. My insurance won't pay for me to fly by air ambulance unless there are lungs waiting on me when I get there. It is so frustrating to know that me and hubby could have traveled over the weekend and be at the hospital ready to go first thing this morning. I was supposed to be flown, but after the air service heard that the Dr.'s wanted me to have fly with a critical air team, they dropped me. They didn't want to be liable for me. I realize I'm sick, but come on I think the Dr.'s were getting carried away thinking I need a team of people to fly with me. I mean I am sick, but I'm not THAT sick. My CF nurse was going to fly with me, but apparently just one wasn't enough. We are now back to square one, which is driving to Duke. I will get there eventually. I'll look back at this post and laugh thinking "It was so worth it, lol". I'm ready to get my new breathers. Bring on the road trip!

Deeper Breaths

Today has been a day of doing much of nothing. We know nothing new and won't know anything until Monday about going to Duke. It's just chillin in the hospital, what a way to spend the weekend. I know I'll get there one way or another next week. On a brighter note, my breathing is much better. I could definitely feel the improvement yesterday. The doctor's decided to put me back on IV antibiotics last week after being off a week and waa laa, I'm better already. It only took four days to notice the difference. No offense to all doctors out there, but some of the doctor's need to learn a little about Cystic Fibrosis before they try to treat someone with it. One of the doctors said I didn't need IV antibiotics because I didn't have a fever. Hello? I rarely ever have fever. When my fever is 99.00, it's high. Didn't they hear my chest rattling and see me heaving for air? Then another asked me if I felt like going home? I can't walk from my bed to the bathroom without having an O2 dropdown/panic event; I don't believe I'm ready to go home. I wonder how people survive in a hospital that doesn't tell the doctors what to do when you know they are wrong. Just because there is MD at the end of their name doesn't mean they know anything about what is wrong with you. I'm looking forward to going to another hospital. I feel like they don't want me here anymore, lol.

More Planning Still No Going

Today was more of the same. Still planning the travel arrangements. Who knew it would be so difficult to get one sick person transferred from one hospital to another. Okay, it's a little more complicated than I just made it sound. It seems that my nurse may need to fly with me because of my oxygen requirement and the breathing problems I've been having. It started out simple. Me and Philip were going to be flown to North Carolina and take a cab to the hospital. Well, the doctor at Duke said I shouldn't be transported without medical personnel on board, namely my nurse. Well, if we do that then Philip can't fly with me because the plane is a small plane that can only accomodate two other passengers. The plane was going to be delayed until Monday because of weather. Now it seems that it may be Tuesday, due to weather. Also, I'll have to be transported from the hospital to the airport by ambulance. Once I get to North Carolina, I'll have to be transported from the airport to Duke University Hospital by ambulance. Such a major ordeal. I didn't even mention the oxygen and getting accomodations for it to be included on the flight and the ambulance rides. Geez! I'm just scratching my head going I just want some lungs! Get me there!!! Ahh, I feel better now. I know it will all work out and all I have to do is breathe.

I'm Going To Duke

Today I found out I am going to be transferred to Duke University Hospital in North Carolina to be evaluated for transplant there. It seems that the other transplant center, where I am currently listed, doesn't feel like I'll be able to wait long enough for their average wait time which is 6 months to 1 year. Maybe they have too many people ahead of me on their waiting list, I don't know. I know my doctor doesn't want me to wait too much longer and frankly I don't either. The average wait time at Duke is only 21 days! Is that not awesome. I guess they have a lot more organ donors in their area than we have here. It happened like a whirlwind. One of the doctor's came in my room and said "it looks like you are going to be transferred to Duke" and I was like "ok?". It was like wham and my heart started pounding like I was waiting to ride the scariest roller coaster at the fair. The rest of the day me and my mom were on the phone letting family and friends know what was going on. Of course we have no definate answers yet because it is all still being "planned" as in whether I will be taken by airplane, ambulance, or private vehicle. I'm all for a road trip but planning to travel with oxygen is never easy. I guess I'll leave the planning to them and just know that all I'll have to do is concentrate on breathing and keeping my nerves in check.

So Much For Paradise

This place isn't paradise, not even close. I have been in the hospital four weeks tomorrow. I have been reading on facebook of my friends going on vacations over the Memorial Day weekend. I miss summer vacations. I have always loved the beach. The last vacation I went on was with my hubby, my sister, and her hubby, in '07. We rented a condo on the beach and had a great time. Oh those were the good ole days. No oxygen was one of my main memories of that time. Me and my hubby never left the condo, except to go to the beach. We were true beach bums, lol. Sis and her hubby at least went out to eat a couple times just to enjoy the whole vacation experience. Anyway, since I will be nowhere near paradise this year, I have to create my own paradise in my mind. It helps to keep me sane, well between my thoughts and the drugs (see post below), I might just survive this whole living hell.

Oh These Crappy Lungs

Today ended up better than it started. Before I even got out of bed this morning, I could tell I was already going to be short of breath again today. Great, I was hoping to have a better day. I got up and did my normal morning routine, made it to the chair by the bed and my O2 saturation decides to drop and I start to panic so here we go. I called my mom to "do something", she says "what do you want me to do" I said "call somebody". Okay, nurses and respirtory get in there and get me calmed down and my O2 back up by blasting me with O2 using the face mask instead of the nose prong. Whew, I made it through another one, but it shot my nerves! I was edgy the rest of the day and had to keep a close eye on my O2 so late in the afternoon I decided I wanted something for my nerves and the headache and the pain in my back from being tensed up all day. After waiting a good hour, I finally got the meds and another hour later I was feeling relaxed. My breathing was deeper and I felt better, finally. Just another day with crappy lungs. Gosh I hope this isn't going to be something I have to deal with daily. I've never been one to like taking pills that alter my mind, but in this situation I'll take whatever I can to get me through this ordeal. I'll deal with rehab once I can breathe again, lol!