I hope you enjoyed the holiday season! Here, we had for 12 days Erika, my partner’s daughter, and it really felt good. We hadn’t seen her for almost a month and a half because of our pre- and post-operation isolation! So we really enjoyed it as much as possible 🙂
My energy is getting better and better most of the time every day; I get to do a lot of things on days when I’m doing well! We cooked a lot together, went for walks, played board games, watched movies…
I read a lot too. I’m at the beginning of cycle 5 of Robin Hobb’s Realm of the Elderlings series. I am completely captivated! These are some of the best books I’ve read in my life, and I’ve read a lot! They are delicious and make recovery much more enjoyable.
I’ve been transplanted for over 6 weeks now! I wanted to give you a summary of these last few weeks. It will give an overview of the beginning of post-transplant recovery.
- My condition in the last 6 weeks
- The big improvements
- The evolution of my scar
- Forced rest, desired and appreciated
My condition in the last 6 weeks
Week 1
The first week after the transplant was a week of contrasts. The first 4 days after the transplant, I was so happy with it, and so proud of the evolution of my physical condition (I started walking the day after my transplant). My kidney was working better and better every day, beyond expectations! On day 5, I came home with a creatinine around 140 (I was at 425 before the transplant, the normal for a woman my age is between 50 and 100).
That’s when I started to feel the psychological effects of prednisone, one of my many medications. I experienced a lot of anxiety and cried a lot. I was no longer sure that I deserved my transplant since I did not seem to be able to deal with the post-transplant. It took me a while to realize that what I was feeling was normal and coming from the medication, and I cried quite a bit for a 72 hours without many breaks. Thierry was immensely present and patient with me, taking care of everything in the house and full of understanding.
Week 2
During the second week, I mainly recovered emotionally. The doctors who follow me recommended that I take half tablets of ativan when I felt the anxiety caused by the medication rise. I also began to understand that my body was finally allowing itself to deal with everything that came before the transplant, everything that comes with a life-threatening chronic disease, and to begin to accept that I needed a transplant. My stomach was cut off to play in it to add someone else’s organ! What a strange thing. During that week, I was also on diarhea every day, until a change of medication. My pressure was too high too, and my wound was still painful. But my new kidney was working better and better, with a creatinine of 100!
Week 3
The third week, I really started to have more stamina. I started making dinner and cooking stuff for fun. I met with the media to talk about living and cadaveric organ donation and about my story. I was tired but satisfied. I started to have pain-free days. I went walking almost every day, and one day I walked too fast and too far. Since that time, I feel like when I have pain inside, it hurts more than before. My diabetes caused by prednisone was clearly uncontrolled, with 15 blood sugar in the afternoons. My kidney function has stabilized at a normal level for a person with two functioning kidneys, it’s just crazy! Creatinine at 83! I received the best kidney in the world!
Week 4
In the fourth week, my partner’s 12-year-old daughter, Erika, joined us for the holidays! I obviously overdid it, playing Throw Throw Burrito (her birthday gift – a boardgame/dodgeball game where you throw burritos at each other lol), going for a walk in the snow and often running after her around the house because it’s funny! I want to do a lot of things, it’s fun! We also cooked a lot for fun – macaroons, meringue cookies. I didn’t take painkillers every day, but almost. I still rested every day, but almost every activity I did was too much. Despite the internal pain, the wound is well closed and I no longer have scabies. The line of the operation is still very pink, but it’s looking better and better!
Week 5
The fifth week was the continuation of the holiday season with Erika. We continued our madness with me who was trying to be more careful, but hey, a child makes you want to move more. It hurts inside when I bend over, or sit too straight, or walk too much. I spent a lot of time reading too, while Erika spent 4 afternoons putting together her building sets. Since the pain continued quite strongly inside as soon as I did something (even doing a puzzle bent a little bit caused me pain that increases over time), I talked to one of my nephrologists. There was even one night when the pain was such that I had trouble falling asleep! (7/10 at the pain level). The nephrologist told me that I probably stretched or tore a tissue inside. I just have to wait for it to pass, and take painkillers.
My double J was also taken away that week. Double J is a plastic tube inserted into the ureter (the tube between the kidney and bladder) during transplantation to prevent blockages during the period of inflammation. To remove it, they must pass through the urethra. Removing it was painful, but it lasted 5 seconds, it really wasn’t that bad. For more information on the double j, click here.
Week 6
This week was the 6th week. Erika went back for the week to her mother’s house, and I rested mainly while reading. I admit that I walk a little less, maybe 4 days a week, but I feel like I hurt faster. In any case, I try to not let the pain get too high and I do fewer things. A little pain is normal; the convalescence is a minimum of 3 months. But I don’t feel like I can do more than I did last week. I don’t think I can walk more every day. Just standing for a while hurts. It’s stagnating a bit.
My prednisone-related diabetes is more under control. I will surely have it forever, while I did not have diabetes before the anti-rejection med. As it can be controlled with medication, it is not so bad, but the fact remains that I still have about thirty pills to take every day. I’d rather have less, so I’d be less likely to have side effects like stomach aches and diabetes. But hey, I need that to live, now!
Again, prednisone gives me another side effect: it keeps me up at night. I tried this week to sleep without medication to help sleep. Big failure, with a night where falling asleep came very late and where I had a night disturbed by awakenings. I really need to sleep at night, otherwise I’m a complete zombie. The next day, I didn’t move much!
Weekly follow-up week 6
Yesterday, I had an appointment with my transplant team and they confirmed that pain is normal and that I need to stop my activities when it starts to hurt. So I have to walk less, and probably stand for less time too.
I’m still nauseated often, but the nephrologist thinks it’s from a pre-existing condition that is amplified by the medication. I’m going to get a new medicine (one more!) to try to calm the acidity in my belly. We’ll see! I hope it will be resolved, it’s really uncomfortable.
The big improvements
The big positive differences at this stage compared to my pre-transplant state is the mental fog that is leaving me more and more. I think more and more clearly and am become myself again with thinking and memory skills. That feels good!
I even managed to drive from Trois-Rivières to Montreal in winter conditions last night! I hadn’t been able to drive such long journeys because of fatigue and brain fog for at least a year. I was immensely proud to have managed to drive; I regained my autonomy! I’ll be able to go to my weekly follow-up appointments on my own, now!
Another important change: I no longer wake up at night to go to the bathroom! Due to my pre-transplant end-stage renal disease, my kidneys produced as much urine at night as during the day and I woke up 2 to 8 times a night to urinate. Now I don’t wake up! Big difference!
The evolution of my scar
The location of the incision hasn’t hurt at all for about two weeks. There is a small thread that came out of one end of the incision at week 3, it should be cut soon by the surgeon. These threads normally stay inside and melt, but in my case, my body decided to push them out! I took pictures of my future scar regularly to document its evolution. Here it is over 6 weeks!
Forced rest, desired and appreciated
I really spent the week relaxing and resting. I want to take time for myself, which explains the wide spacing between my articles and my slowness to respond to messages. My mood isn’t super bad, but not super good either. I find everyone’s life and challenges quite a bit more tragic than before. I think I’ve lost my sense of immortality, and I’m learning to deal with it. I have an adjustment disorder; I’m trying to learn how to deal with the post-transplant but it’s not always easy.
With that, happy new year, I wish you health and gentleness! ♥
See you soon!
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