Already 13 days since the transplant. The last time I came to write here was to tell the story of the operation and of the days that followed. As you know, the transplant went very well and my body is recovering well. At the end of the article, I told you about my mood which left something to be desired. It was just the beginning of a week of intense psychological battle between my body, the medication and my brain.
I wish everything went perfectly so that I could continue to represent hope for people who are waiting for a transplant. My extraordinary physical recovery foreshadowed the perfect transplant. But I have to talk about what I’m really experiencing. Maybe it can prepare people for what’s next? In any case, I hope so. If at least I can help, my suffering has meaning. And everything I’m experiencing now is supposed to be temporary and will get better soon.
There is still hope, transplantation remains the best treatment for end-stage renal disease, but it is not true that everything is magically better after the transplant. It’s going to take time. And in the meantime, for me, it’s difficult.
Return home
As you know, the operation went so well that 5 days after the operation, I was already back home. I walked quite well, I could go up and down stairs, bend over, etc. The physical recovery was going extremely well, with my new kidney working perfectly. My blood was being filtered at breakneck speed, and I was full of excitement about the progress I was making every day in my mobility.
On day 6 post-transplant, I started to feel sad. And sadder. And more and more sad. Until that evening when I finally started crying for more than an hour in my boyfriend’s arms.
I decided not to take care of my medication myself and to ask the pharmacy to make pods for me, because I had too much to manage. I was afraid of making mistakes and losing my new graft. But above all, I cried without knowing why, overwhelmed by an immense distress that took all the place.
I cried pretty much non-stop for 48 hours after that. I had a lot of anxiety, dark thoughts, I was inconsolable for no clear reason. During my Friday follow-up at the transplant clinic, I was offered to return to the hospital for medical management of my symptoms. But honestly, as long as I’m crying, I’d rather cry at home near my boyfriend.
Side effects of medication
I probably react strongly to prednisone, one of the anti-rejection medications I now have to take. The side effects are multiple but do not affect everyone. Me, I seem to be affected by the part of mood changes and the part affecting the heart rate (my pulse is constantly between 110 and 140 beats / minute).
I was told that I could take half ativans during the day to control anxiety. Since prednisone also prevents sleep, I was also told to keep taking it at bedtime to get a good sleep. Very strange for me to take pills as needed for anxiety.
Along with all the rest of the medication I take, I also have several other side effects ranging from diarrhea to nausea, glucose and blood pressure spikes. My body is not comfortable, at the moment.
Not what I had planned
Honestly, I’ve been working for two years to get a kidney, to get better. I’ve worked so hard and tirelessly for this! And finally, the day came, thanks to a wonderful donor.
I think I expected a difficult physical recovery, but that I would start to feel better almost instantly as my blood was filtered.
That’s not what happened, that’s not what I’m experiencing. At the moment, I feel worse than before the transplant. I feel really fragile emotionally. I have a hard time keeping hope that it will eventually get better. I know it’s going to get better – but just because I force myself to believe it.
I think my expectations were too high because of the positive stories I had heard. “A person gets a kidney transplant and already feels better when they wake up!” “Every day got better and better until things got back to normal!” I had even heard that thanks to prednisone, I would have the energy to do maybe even more than before. All the stories I heard were positive.
I feel like I wasn’t mentally prepared for what could go wrong emotionally. My body is doing perfectly, better than I hoped, but my brain is curled up in a closet wondering what the meaning of life is. Not at all the vibe I thought I was going to be in 😛
The support around me is priceless
I posted last week on instagram to give people news. It’s not the best news in the world, but it’s my reality. In response to my post, I received dozens of testimonials telling me about their own journey, that prednisone can really give intense effects, and that it ends up getting better. You just have to believe it.
It really helped me. Instead of feeling weak and unable to respond well to this much-desired transplant, I became in my head another person for whom psychological recovery after the operation was difficult. It helps to understand.
My family, friends and community write to me every day to check on me. I really don’t feel alone.
And let’s talk about my boyfriend. My boyfriend who, since last week, has spent hours hugging me and letting me cry. He does all the dinners, cleans up, while letting me do what little I’m able to do and congratulating me every time. I never feel judged. He holds me in his arms, reminds me that this is normal and temporary. It’s going to get better. It’s a tough time to get through, but it’s going to get better.
He makes my life better. ♥
One day at a time
To get better, I rest. I walk outside every day (today I did 3.15 km in one trip!!). I talk to my loved ones, I read, I watch TV. When I feel the anxiety rise insurmountably, I take half an ativan. I persist until the day when it will get better.
My dose of prednisone drops every week. Already, I am better than last week. I have to let time act, and accept that this is the path I have to take before getting better.
The transplant does not solve all the problems, it is a treatment that comes with side effects. Immediately after the transplant, doctors must play a lot in the medication so that the transplant stabilizes, which leads to consequences. I can’t wait for it to be under control.
I believe in it! It’s going to get better!
See you soon,
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