Hello,
What symptoms have you experienced post transplant? My incision is awkward- bumpy with fluid pockets and indented from the staples and would vac so I’m still moderately sore and feel tugging or tightness, throbbing at site.
I have achy legs all of the time. Nausea most days, emotional tears, insomnia severe. Even vision problems. My right thigh burns when standing for long due to nerve pain. It’s still numb too.
Anyone else have achy legs and why or what has helped ?
Pain/shivering may be due to high dose of tacrolimus/cyclosporine. Over period, your nephrologist will reduce dose which may help. Vision problem is mostly due to high dose of steroid. Consult your nephrologist to chevk if dose can be adjusted.
congratulations on the Transplant! Now living with some side effects. Fluid pockets are what concerned me reading this. I see you had a WV so I would follow up with your physician regarding that. As for the leg pain, is it restless legs or generalized pain? Nausea most likely is d/t your immunosuppressants as this is a side effect and Zofran is pretty effective for me! Insomnia and emotions are pretty common after a transplant and will most likely improve over time as mine have! Talk with your Nephrologist regarding these symptoms as there are medications than can help immensely. I’m 4 days away from celebrating my 10 yr Anniversary of my Renal Transplant! Congratulations to you and the Gift Of Life you received!
Hi Leslie, first of all congratulations on your transplant! I am 3 and 1/2 months out. Recovery sure does have its ups and downs! I don’t have the nerve pain down my leg, but I have read that it can happen and usually does resolve eventually. I do have some leg aches, occasionally, especially at night.
I’m so sorry you had complications with your incision area but it sounds like things are resolving. I have residual numbness in the area of the transplant incision including the top of my left leg. It’s all kind of coming back to life and feels more sore and bruised now, then it did right after the surgery with occasional sharp pains when I move a certain way, as if something pulled or tugged at a stitch, but most likely it is from scar tissue. It’s not enough to interfere with daily life though.
Which antirejection medication’s are you taking? Steroids cause horrible insomnia but that will get better when they start reducing your dose after they are sure your body is accepting your sister’s kidney. Myfortic has affected my stomach with occasional bouts of cramping. I too had vision issues in the beginning but that has finally resolved. I think it’s all about adjusting to the side effects of the antirejection meds. I have to remind myself that a kidney transplant is not a cure. It’s a treatment and treatments have side effects and I’m grateful I could get a transplant versus the other two choices -dialysis or death.
For me, it was at the three month mark that I really felt like I was starting to turn the corner. They did a blood test for me last week to test for rejection and so far I am not creating antibodies against my new kidney, thank God, so the transplant nephrologist felt comfortable reducing my meds a bit. Hoping some of the side affects will improve.
Hang in there. It will get better!
If the "fluid pockets" are not causing an infection, then consider:
Nausea and achy legs can both be caused by dehydration or mineral deficiencies.
If I am not eating with my transplant meds, I drink at least 16 oz of water (1/2L) or I get queasy.
My dermatologist is the first dr that actually ordered mineral and thyroid tests for me. It turns out I was magnesium deficient and anemic. They check my CBC monthly, but nobody looks at these levels.
I’m 8 weeks out and deal with nausea often. Also have a large amount of fluid in my abdomen, called a seroma. Wasn’t an abscess or my white count would have been high They did a CT and saw it wasn’t pressing on my kidney and it wasnt dangerous and said to let it reabsorb, but it will take months (goodie!) They said the last two patients who had it drained, got infections and ended up back in the hospital for a month.
6 days post transplant 
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