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.