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!

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.

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!

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!

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!

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.

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.

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.