Hello all! Just giving an update on how life is after transplant! To start, my step sister/donor is doing wonderfully! She aced her post op and is living life fairly normally, besides being on light duty at work.
As for me, surgery recovery is going well. All of my incisions are pretty much healed, but I still have tenderness where the muscles are still weak on my right side. Numbness around the incisions and the top of my right leg hasn't changed either, but I'm pretty used to it now. I'm able to cook and do most cleaning tasks on my own, but I have issues driving due to side effects from the prednisone and tacrolimus.
The transplant team decided to accelerate my prednisone taper schedule, so I was dropped from 15 mg to 12.5 mg 2 1/2 weeks early. I've also gone down on my tacrolimus, so I'm hopeful that my side effects will improve soon. Currently, I'm still having got flashes, mild insomnia, mood swings and tremors. I also developed sensory issues, such as sensitivity to heat sources (such as in the shower I feel like pins and needles are hitting my skin until it adjusts), and tingling/flushed sensations that leave me nauseous and tired. Unfortunately, there's only so much that can be done right now, so I'm making the best of it. Switching to Myfortic from Mycophenylate has helped my stomach issues tremendously, which has also significantly helped my energy level. I've accepted that I'm going to be having issues for a while, so I'm just keeping a log for my team and managing my symptoms as best as I can.
Overall, I can say that I'm doing well! My creatine is a little higher at 1.01, but that's mostly because I'm having issues keeping enough water in my system. I'm confident it'll go back down as I get used to drinking enough water during the day and night. My potassium and Phosphorus are in normal range and my other levels are looking great as well! Some of the weight gain from the prednisone has made my body uncomfortable, so I'm trying to stay active and eat as healthily as I can. It's worth noting that I do have back deformities and gout/fibromyalgia as well, so gaining 5lbs in a week and a half after losing 7lbs is not the most comfortable if you're small like I am (I'm 5 ft tall and a petite build). On that note, I am halfway to the 3 month mark! Then I can go to the gym, movie theaters during normal hours and not wear a mask everywhere!
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Ladybug_05
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Well done Ladybug you are doing so well and I love you have such a positive attitude about some of the not so good side effects you are going through. Your accepted thst this are hopefully short term and looking at the positives. That really good you are a head of schedule on the reduction of steroids.
The water I take must be hard as one day your on heavy restriction a d the next you have to drink 3 to 5 litres. Your get there.
Well done on getting back to doing normal house hold things but don't over do it and especially the exercise at the gym. The weight your are gaining is superficaly and will settle, I know it's hard being petite as more obvious. I to am petite and very light so she I have a transplant it will make me feel uncomfortable Imagine and that's what your finding.
Keep you g how tour going your attitude is amazing and hope to do as well when I get my miracle call.
It's a wonderful gift your sister and law gave you and pleased she doing well. Your doing your new kidney proud.
Thank you! The gym thing is mostly to get me out of the house- as it stands I don't get out besides to walk around my neighborhood, go to appointments and occasionally to go to the store. I have specific instructions on only being able to use exercise equiptment on the lowest setting, so I'm not terribly worried about overdoing it. I try to be careful about that since overdoing it has never done me favors before haha!
Ladybug, So glad things continue to improve. Prednisone is a nasty drug so things will improve so much when you are off of it. It makes me crazy and I blow up. I hope things continue to improve and it is great you are sharing your journey.
Thank you! As it is currently prescribed, I'll be on a low dose of prednisone for life. There is a possibility of going off of it completely after one year, but most patients take it for life.
So happy for you!! I am 5 months post transplant and went through the same stages not that long ago and my spouse -who was my donor- and I are doing great. Life is pretty much back to “normal”. I’m also on the same medicine regimen (tacrolimus, myfortic and 5 mg prednisone). Check with your transplant team about biotin. I started taking it a few weeks shy of month 4, but wish I had started a bit earlier as I’ve experienced a bit of hair loss. Hopefully that won’t happen in your case. Cheers for your continued recovery!!!
If I'm having hair loss, I haven't noticed haha. I actually have a ton of thick hair, so it would be a welcome change to not have to heavily thin it every 3 months or so!
Very happy to hear your success! My daughter is 3.5 months post transplant. She too had GI issues with Myfortic but she also has Crohn's. She switched off Myfortic last week to an older med in its place. Her Tacro levels are all over the place with a lot of variability; they think it is due to her Crohn's. She has the hand tremors and hair loss as well as head aches from the Tacro. Her creatinine levels are on a steady increase along with BUN with GFR decreasing. He drinks 2-3 letters of water a day so please try to get your fluid intake up! It's so important. Glad your doing so well and am very happy for you.
Unfortunately my daughter has to have a biopsy done this coming Tuesday to see if the issue with her increasing creatinine is early onset rejection.
Be good to yourself, hydrate, take your meds as ordered and balance exercise and rest! God bless. 🤣
Thank you! I was taking Mycophenylate, but it caused a lot of gut issues so we switched to the Myfortic which is much better. Hopefully the biopsy goes well for her and they can figure out why her levels are increasing!
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Finally some good news!!!
How can I make my GFR go up? 
Not Diagnosed Yet, But Going To The Doctor Next Week
Post Transplant Side Effects
