HI - welcome to the wild ride. I'm about 14 weeks out from transplant, listed in mid January and transplanted at the end of April. After much reading from a lot of transplant patients, I will say everyone's recover immediately and long term is different and that is OK. It is an amazing thing to be given the gift of life. One I don't take for granted, one I cherish everyday, one I'm thankful for every minute and one I will always be forever grateful for to my donor and their family for giving me this second chance at life.
Having said that, I will share my experiences with you and feel free to ask me any questions.
I became diabetic pre-transplant and am now. But I will say that I am needing less and less insulin as time goes on. Most recently I'm eating carbs and such and not taking insulin and getting normal blood sugar readings. This is still evolving so we will see where this nets out over the coming months.
Weight: pre-transplant - I weighed 93lbs on the day of transplant, I left the hospital 3 weeks later at 103lb. I was retaining a lot of fluid. I'd wake up thinner and put on about 5lbs of fluid a day. Pee it all out overnight and start all over retaining the next day. Around 8 weeks post, this stopped happening and I didn't retain anymore. Like I said I'm 14 weeks out and weight 108lb of MUSCLE. I was bones the day of surgery and I've been steadily putting on weight through exercising 2-3 times a day and lifting weights. I started out with 1-2lbs at 3 weeks post and now that i am off restriction of lifting no more than 10lbs, i'm can live and physically do a ton more. I've had no problem putting on weight now. I can eat and my body is happily putting on weight instead of struggling. I just had my feeding tube removed as well. The last time I used it was the last night I was in the hospital during my transplant. I must say it is nice to see my body cooperating finally.
My fingers and toes were barely clubbed pre-tx, so I haven't noticed a difference yet.
Steroids: my biggest complaints were fluid retention but that is gone now. I have the puffy face some days and others I don't, very random. My face has peach fuzz but I've seem to have lost all the other hair on my body. Well except my head of hair and eyebrows.
Recovery: honestly, mine really wasn't hard overall. Yes, I had some very good pain meds post-tx. I used my pain pump often for the first 4 days, then switched to oxycodone and tylenol. I didn't use the epidural they placed. I kept on top of the pain with 5mg of oxy and 2 tylenol during the day because when I didn't man was that painful. I had my sternum broken to go on bypass so it was mainly the throbbing pain in my sternum that would bring me to tears in a heartbeat. But like I said, my nurses helped me keep up with meds to get ahead of the pain. After week 2, I used one 5mg of oxy in the morning and that was it for the day. Off all pain meds at 5 weeks post. I was off the vent within 12 hours following transplant, breathing happily on my own with the largest smile on my face because I could breath again. The most amazing feeling. On day 2, I was up sitting in the chair and up for my first walk. I walked 3 times a day gradually working up to 30 mins each time. I rarely was in bed, always up sitting in my chair, standing or walking. I was doing PT with weights and starting on stairs too after a week. I remember the most important thing my surgeon told me was to get up and move. I might be in pain or tired but I must get up and exercise those lungs. They need to fit and fill into their new chest cavity, it will help with inflamation, and I need to expand them to get them working. I took that advice to heart. He also said, it will take about 6 months to fully recover to see the full potential of your lung function. Your new lungs need to recover from their trama of being transplanted. Your rib cage needs to adjust too. Im glad he told me that because my first PFT's were in the high 50's. At 8 weeks post-tx I had an FEV1 of 89% and since I've gradually inclined over the past 6 weeks to 94%. I think my PFT's have recovered very quickly but not all are like that and it is ok, it will happen. I felt great at 4 weeks and was probably doing more than I should of.
No one told me about the chest tubes, and honestly that was the worst part for me. They were heavy, annoying and made it hard to sleep. The removal wasn't fun, I made sure to have pain meds on board. Nothing says fun like having a chest tube ripped out of you and stiched up all in 45 seconds. I had some fast residents doing the procedures. And you have 4 of them that have to be removed, often never at once but over a periods of days or a week. I apologize because I think you are female but can't tell from your screen name. Get used to everyone looking at your chest. You lose all modesty and at some point you will find it absolutely normal to lift up your gown to show your incision and chest tube sites. Having said that, bring sweats or shorts to lounge around in.
Expect a bump or two in the road, is what my tx doc told me. It could be infection or rejection at some point post in your journey. You will have a team of docs invested in your care to help get you through it.
Emotionally: I was ready for transplant as my other option was death. My FEV1 right before surgery was 16%, I was on 5 liters of oxygen, bipap and had a critically high carbon dioxide level. I barely could get off the couch somedays and others I surprised myself at what I could do. But, I was very sick and was fighting with all I could to stay alive. I was on IV antibiotics for 9 months straight even on the antibiotics on the day of transplant. I couldn't go longer than 2 weeks at one point between IV's. so, having rambled on about that I was ready emotionally and physically. Did I have feelings of guilt, no. My donor didn't die to give me life sadly it was their time and their and their families selfless act gave me life and I am truly forever grateful for it. I might have a weird way of looking at this but bare with me. I chose to honor my donors life by taking care of the gift he/she gave me, by living each day to the fullest, by living out my dreams and by being the best person I can be. I want their family to know that their gift to me is one I will never take for granted. They gave me a second chance at life and I will live it to the fullest.
I'm living life again at 32 and it is amazing. I'm running, hiking, biking, taking my dogs to the park, swimming all with my husband and family. I smile again. I'm enjoying summer and will look to return to work this fall when the weather turns crappy here in Seattle.
I have some amazing dreams I want to fulfill and need to ask my transplant team if I can physically do them. (anyone know if I can scuba dive? ) I guess that is something to add ,develop a great relationship with your tx team. You will rely on them alot. Listen to your body pre and post, any small changes in your vitals will be important to report to them. I still take my vitals and spirometry daily to notice any small changes in case infection or rejection develop.
If asked would I do it again, without a doubt I would 100% do it again. Sorry I rambled on but I figured you would want to know all the details.
