Every time someone sees me since my transplant, they always ask me how I am feeling now. I guess its a valid question. Everyone says I look so different so it makes sense that they would want to know if I feel any different. There are good things that have changed and there are some bad things. I have to admit that I don’t really let the bad get to me but in the end, I need to be realistic about the fact that I have a long term illness and it won’t always be rosy.
Life in general
I have a lot to be grateful for. I spent a lot of time once I had recovered from surgery trying to do as many things I couldn’t do when I was on dialysis. I took a long bubble bath. I went on a mini holiday and swam for two days straight. I went to a game reserve and met some incredible animals. I ate things I hadn’t been allowed to eat for two years. I had a coke! My life went back to normal so quickly and I am so grateful for that. Sometimes we tend to take the little things for granted but I was so incredibly happy when I could do these small things.
I have tons of energy! I woke up from my surgery feeling like a new person and each day after that it just got better. I feel like I can do a million things in a day and very often, I do. I started exercising again but took a break for several reasons but I cannot wait to start again. There are limitations to the exercises I can do, so I am trying to find a routine that works for me.
With kidney failure, your memory is awful. You forget something that someone tells you after five minutes. Or you forget what you’re saying mid sentence. I am very happy to report that my memory has gotten much better and that I fully intend on studying this year and next year.
Skin (the good)
If you remember my post from a while back, you will remember that I struggled with very dry skin (read about it here). This got so bad when I was on hemodialysis. My skin was so dry it was flaking off. I tried everything to cure it but nothing really worked long term. It’s so strange how my skin started going back to normal post transplant. My skin tone also changed. Before my transplant, my skin was so dull and grey. My face literally had patches of dark skin and patches of light skin. I wore makeup on most days. Now, I rarely wear makeup. I feel confident enough to do so. I have however been experiencing some breakouts but I will post more about that in the bad.
Before I became ill, I always weighed somewhere between 65kg-70kg. This always put me in the overweight category, according to BMI calculations. I was always on some sort of diet to lose weight but it never lasted. When I started dialysis, I started losing weight drastically. A mixture of being nervous and anxious made me lose my appetite but dialysis also made me feel quite ill so I didn’t eat very often. Due to diet restrictions, I also lost weight. At some point I developed gout (read about that here) and I had to watch what I ate even more. After my transplant, my new kidney started working on the same day and the excess fluid that dialysis couldn’t remove left my body. I left the hospital at a very skinny 49kg.
I am now at about 58kg and I am very happy. I do not want to pick up too much weight as I am worried about the side effects of being overweight and I wouldn’t want to put that pressure on my kidney.
I guess this relates back to my weight. Since being on prednisone, my eating has been out of control. I can eat three full meals a day and have many snacks in between. Some strange things have changed since the transplant too. I now love dark chocolate and green salads, both of which I couldn’t stand before my transplant. I also start my day with a coffee now, instead of tea. I absolutely love spicy food, whereas before I would prefer mild.
I don’t want to dwell on the bad because I am quite grateful for the good. But I have to be honest about my experience. That being said, the good definitely overpowers the bad. I would take this life over being on dialysis any day.
My hands have actually started to shake quite a bit and the tremor gets quite bad at times. While it does not affect my daily life, I sometimes struggle to make notes for an extended period of time and it is quite noticeable when I am holding something. Sometimes, but very rarely, the shake travels up to my shoulder. It does not bother me at all though.
This one bothers me a lot. I have always had thick, long hair. After the transplant, my hair started falling out from the root. Since my hair is thick, it wasn’t noticeable but as soon as I would tie my hair back, you would see the bald spots. Washing my hair was a nightmare because every time I brushed my hair afterwards, clumps of hair would end up in the brush. So I ended up snipping most of it off so that I didn’t have to deal with that.
I am not going to actually complain about this because these tablets keep me alive. They ensure that my blood pressure is under control and that my body does not reject the new kidney. But taking so many pills in one go is a bit crazy. They all come with their own side effects and some just taste horrible. But I am very grateful that they exist.
Skin (the bad)
My skin has been breaking out quite badly because of the prednisone. I have pimples on my cheeks, forehead and even in my eyebrows. I have never suffered from bad skin before so this is very different for me. I have visited a dermatologist and he has given me a treatment to try for three months. One month down and my skin still has not improved.
My skin is also a lot thinner than what it was, which means I wear a lot of sunscreen. I also have issues with waxing. I waxed my eyebrows a few days ago and a thin layer of skin came off as well. I am not sure I am going to fix this going forward but I will figure it out.
4 thoughts on “So what has changed?”
I go through everything you have listed as both good and bad for side effects. From the increased appetite to the thinner skin. Also the shakes and tremors. Yes lots of energy but you need all of it to burn off the excessive calories you take in now. I am 5 months post transplant now and I am hoping for a long successful journey like everyone else.
Glad to hear things are still going well for you! Thank you for sharing “the bad” as well- it’s so important to be candid about these experiences! 💜
My first transplant lasted 20 years and my appetite had me always craving chocolate. I could eat a Whitman Sampler in about an hour and still be hungry. Overtime I learned how not to eat. Weight is great. Never slept more than 4 hrs. Now have a second transplant and 9 months post transplant, having issues with a low white blood count. Bone biopsy, but mostly I feel the same as I did from the first transplant. Transplantion works!!! Who needs sleep anyway, it’s over rated