Kidney
What does your post transplant recovery look like?
July 10, 2023
in Kidney
Hi everyone!
I'm new to this forum and have loved reading the support, optimism and generosity shown!
Its been five months since my transplant and I'm still having a lot of trouble with what I assume are side effects to the tacrolimus. Like terrible fatigue, migraines and I have caught a respiratory virus that just won't budge. I'm working from home twice a week but dream of the day I'll have the energy to increase my work days, go into the office, travel and spend more time with friends and family.
My question to you is how long before you started to adapt to the tacrolimus and feel ok-ish? What did your recovery journey look like?
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Transplant Patient
I always say I healed in increments of 3. I noticed big shifts in how I was adapting at 3 months, 6, 9…
i was pretty low key until around the 9 month mark. That’s when I returned to working, was able to create somewhat of a normal routine, hung out with people more… I also got off a lot of meds/they adjusted a lot of my meds within the first year, so the more that was figured out the better I felt
i did have a really complicated surgery process, so I’m not sure if that also complicated things. I’m also a liver transplant recipient if that helps
I feel like such a jerk saying this. I planned for the worst for recovery and it wasn’t. I planned for 12 weeks off work and after 4 weeks I was begging to return to work, remotely. I had a small bit of rejection and had an additional round of Thymo about 4 weeks post transplant, so I knew I had no immune system, but i felt amazing and was bored. I was cleared to work remotely after 6 weeks and still have flexibility with work to take time off for appointments or whatever came up. I was so fatigued before transplant I had an incredible amount of energy after. I think this is stuff you can discuss with your team. These are things I discuss with my providers, monthly. I did catch a respiratory virus about 6 months post transplant but it only lingered for a couple of weeks and mostly caused laryngitis. I am still very cautious about being around people. I wear my mask in crowded places (recently went to a Blink182 concert and wore my mask because it was crowded and gave me some anxiety) I am rapidly approaching 1 year post transplant. My only complaint was the irritation around my belly button. I was no ready for those nerves to be so sore. I still prefer to wear dresses and nothing with a waistband. The “no pants dance” has become normal in our household now. 🤣
You're not a jerk at all! It sounds like your energy is well deserved after such bad fatigue before your transplant. I hope you had fun at the Blink 182 concert! Brings me back to high school days!
And thanks Ali, that really helps. I like the idea of seeing our recoveries in three month stages. Sorry to hear you had a complicated surgery process but it's great that you're on the up and up now.
Both stories show just how different all our post transplant recoveries can be!
My recovery has been a beautiful process. I had a living donor and my kidney has been performing beautifully. That being said, I still have had lots of adjustments to meds and navigating side effects. I also had a second surgery that was incredibly painful about a month after my transplant to remove my catheter and stent. My recovery from that has taken longer than the transplant recovery. July 10th was my 2 months post transplant and just last week I started going to some really restorative yoga classes and seeing some friends. Still need lots of rest and im not working full time yet. Finances are tight and it makes me nervous some days but Im incredibly grateful for the progress being made and how ive learned to honor my body and meet myself where im at instead of rushing my healing.
Be gentle with yourself. It is a marathon, not a sprint. Keep in mind everyone's body can take different times to heal. I was lucky to have my father as my living donor. I was out of the hospital within a week. Back at work full-time within 4 weeks. However, and that is a BIG however. I did not feel like myself for almost a year. I assumed it was my body adjusting to a major surgery and all the medications. Some of the medications become less as the time goes on. But I would say it was a solid year before I felt like I could conquer the world again. Always listen to your body. And make notes to let your care team know in case they have a solution as well.