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.

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.

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!

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.

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.

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!

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!