Hi all. I'm currently about 4.5 months post transplant, and my goodness my meds are giving me the round abouts. I've been very vocal about the side effects that I'm experiencing: hot flashes, mood swings/emotional instability, hightened anxiety, short term memory loss, sensory issues, hair loss/thinning, tremors/muscle weakness, exhaustion/fatigue, weight gain (about 20 lbs up now). I was recommended biotin for my hair and I'm on the lowest prednisone dose for maintenance of 5mg. My tacrolimus levels are somewhat stable, but every week or 2 my team has to either up or lower my dose (currently 3mg in the morning and 4mg at night) which makes my tremors worse. They stabilize after about a week to a week and a half, but of course that's about when my meds get changed again (go figure, right?). My stomach issues that I had from Mycophenylate went away once I was changed to Azathioprine thankfully, but my WBC count is persistently below 3 and in the low 2 point range, so I get to be tested for CMV!
I'm trying to keep a positive outlook on things since I know that transition can take up to a year. I see a therapist every 2 weeks, have started going to the gym about a month ago 2-3x a week and I also started school again with a class this summer. My team has been great about trying to keep my comfortable and listening to my concerns, but we're sort of in a wait and see until my 1 year biopsy. My family has been supportive and understanding about when I have bad days, but it's frustrating when I go from being on top of the world one day, and the next I'm tremoring so badly that I can't walk unassisted and am basically bedbound from exhaustion. I'm nervous about starting classes, since despite them being online, it is still a lot of brain and muscle power to get everything done. Did anyone else have this struggle too? I hate sounding ungrateful to have this transplant given what my donor went through to have the surgery, but not being stable is very draining and emotionally difficult.
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Ladybug_05
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HI Ladybug_05, do not give up. I am the caregiver to my spouse he 6 mo nths ago got his donated kidney. He is also having major issues with fatigue, no energy, GI issues (most recent issue) lack of appetite (new issue)we think due to coming off Bactrim. HE shakes like a leaf most of the time regardless of med amounts. I think what his doctor said to agree with me at our last visit a week ago, this is a lot like going through chemo treatments. My spouse had cancer 29 yrs ago and chemo 9 months. HE is almost 60 and the meds he is on now , to me, have more problems in his body. we know the first year is the roughest. Please embrace your loved ones who root you on cheering, and don't lose sight that in time thing will improve. that is what I keep saying, just keep moving forward in a positive mental way no matter what. I see the counselor to keep my sanity and my spouse 'should' but won't see anyone. I wish my spouse' energy would return. Thanks for writing.
Hi, Ladybug_05. My heart goes out to you. Yes, the first several months were utterly crazy for me, with many of the same symptoms you describe. I thought I'd go crazy. I'm 1.5 years post-transplant and things are better--not like they used to be, but a "new normal" that you'll figure out eventually. Forgive the cliche but do hang in there!
You are not alone!! The struggle is real. My daughter is 6.5 months post. She just started Belatacept infusion yesterday as she could not get in range on Tacro (long lasting or twice a day- she will taper off of Tacro- she is currently on 5mgs twice daily and has all the side effects you are experiencing, she is on the same regime you are. She weights 120 up from 100 at transplant). She had her first biopsy in February and her team plans on doing another in a few months to see how the kidney is doing. Her creatinine levels dropped to the acceptable range shortly after transplant but started creeping up again in January (3 months post). She's also struggling with severe anemia and has to get bi-weekly injections now to avoid serious health risks and blood transfusions. The battle is real! Wishing you the very best outcome for improved health! ❤️
Thanks for sharing this information about your daughter. I am my spouse' only support/caregiver where we live far from family. HE had his transplant 6 mos ago and the first 2 mos were great, then all kinds of problems came up from FEb 10 to mid May though the new kidney is doing well now. HE had a minor rejection late FEb and that was resolved. Now the issue is low hemoglobin and low white blood cells. He has done almost nothing requiring exertion since 2/10 and it is so hard to watch how little energy he has to do anything. He is so weary from feeling tired and shaking all the time he told me. HE feels 'stuck' in life. I keep my positive attitude and do all the chores at home, but its wearing on my emotionally seeing what he is going through. 29 yrs ago he went through chemo 9months and cancer free after that, but 'this' challenge post transplant is much harder than his 9 mos of chemo. I see a counselor, but cannot get him to see anyone. How are you holding up as her caregiver? I truly wish you all the best.
I try to get through each day. These forums help. I work full time and have just learned to let the small stuff go (like housework, ironing etc). My daughter is 28, currently not employed as she employer let her go in July 18, do to undue hardship to hold her job without a transplant timeline in place. She had only worked full time fir 14 months due to another autoimmune disorder she was diagnosed with at 20- Crohn's disease - she was very ill when diagnosed weighing only 80 pounds, extreme Anemia, lost so Minh hair that it appeared she was balding, etc. the list goes on! It took her much longer to finish her undergraduate degree, she then did a little traveling before landing a full time job- then diagnosed with IGAn aggressive form - end stage kidney disease on April 13,2018. It's been a rough life for her. We mothers just want a better life for our children. So one day at a time and sometimes one minute at a time. And breath! 🙏❤️
Hello Lbw62, thanks for sharing the challenges in life your daughter is having and you beside her doing all you can to support her. Thank goodness you have a strong relationship with her. I work full time also and spouse retired 5 yrs ago. HE has genetic polycystic kidney disease. His oldest brother (deceased 2018) also had it and his wife was his organ donor. Right now we just need some major positive changes to happen because since February it has been one problem after another to resolve, and resolve takes months to fix. I truly understand what having patience is about. I also realize so many others in life have more challenges than my spouse does or 'we' do. I make a gratitude journal entry daily. I truly wish you a blessed day and your daughter too. Don't lose hope, things will improve. They will. Just keeping saying that mantra over and over.
Hi Ladybug_05. Don't give up. I am over 3 yrs transplant, and it took a while for me to get regulated. You will get better. I had tremors so bad, and they put me on time release Envarsus. It helped much better. Everything you are going through will get better as time goes by. Thinking of you. Hang in there.
Hang strong kidney warrior. My son is hoping side effects lessen as he gets closer to a year. He is 6.5-month post-transplant and is struggling with many of the same issues. To add another problem he now has major acne from the 5 mg of prednisone. Doctors say it is only acne, better than kidney failure. Well yes, It may only be acne, but not needed by someone who already has self-esteem issues with hair thinning, weight gain, extreme fatigue, extreme irritability and mild autism. He too is grateful, but it reminds me of my aunt saying, "I may not be in a hospital, but the corn on my big toe still hurts," LOL Hoping your health continues to improve every day.
I’m a little over 5 month post transplant and can definitely relate to what you’re going through. On my bad days I feel guilty because I feel like I should be doing great for my donor but I’m learning that it just takes time. I also just started online classes and it’s been hard to try and get back into the swing of things, but I also found it helpful to be able to focus on something outside of my kidney transplant. I’m wishing you the best, but know that you’re not alone in struggling with things like this post transplant!
Ladybug_05: As my sister and I are trying very hard to get on a kidney transplant registry, I am quite shocked to learn from you and other responders (Gardner-NY, 0325 and MomofRecipient) that initial adaptation and recovery to sense of well being after acquiring kidney can be so onerous and the symptoms are those comparable if not identical to cancer chemotherapy. Do any of you think indefinite dialysis is preferable, honestly? I am only soliciting your what you may say like "review (of a merchandise)" , not meaning to offend or otherwise confront you. Jerem
I was on dialysis for 13 months before being transplanted. I will honestly say that this is preferable due to my own issues with dialysis. I did emergency hemo for 2 months and my body did not adjust at all- I was sick all the time and every time i had a treatment I would end up with migraines, nausea, exhaustion, etc. I did PD for the last 11 months and it was better, but I also have GI issues that were aggravated by the PD. I couldn't travel really, was even more tired than I am currently and was persistently in the hospital with issues. Bare this in mind as well: I've never had a healthy kidney before, as I was born with my CKD. My team warned me that it would take longer to adjust due to my body being used to just feeling crappy for so long. It's also my first transplant and I have other health issues on top of this as well. I'd imagine that not everyone has such a hard time post transplant, and I'm still holding out hope for my body to finally cooperate.
HI Jerem, My husband has PKD diagnosed going through chemo 29 yrs ago. His oldest brother later found out he also had PKD and later in life had a kidney transplant from his wife and the donated kidney was viable for 17 yrs. Other medical problems came up and then the donated kidney stopped functioning and the brother went on at center dialysis 6 mos and a year 'at home dialysis'. His wife told me that the dialysis left him exhausted and feeling much worse than having the donated kidney from her. I realize getting a donated kidney from a live donor has more positive results for most people than a deceased kidney organ donated, which my husband received. I realize everyone has different medical problems on top of their renal issues, which makes the choice whether have a kidney transplant or dialysis is the better choice. For me as the caregiver, I am just frustrated with not knowing for sure if the past four months of no energy, and shaking horribly is the new norm for my spouse. Emotionally for me the past 4 mos have been very difficult. I wish someone could tell me how long the worst side effects of meds and surgery last. Two months after surgery my spouse was doing pretty well, higher energy than in past 5 yrs, and in early February all that changed and still no energy.
I think it is great that you are seeing a therapist, going to the gym, and trying to lead as normal a life as you can. Your body at 4.5 months is still in the healing phase as a kidney transplant is a major surgery combined with the immunosuppressive meds that you are on to keep your new kidney happy.
I remember my tacrolimus was changed quite a few times during that first year. It comforted me to know that via the labwork, that my Transplant nephrologist was monitoring my tacrolimus so that my body didn’t get too much or too little. I could tell when my tacrolimus was high as my tremors were ore noticeable. I found keeping a sense of humor about it and thinking that day of shakes was not the day I should choose soup for lunch or that it might be a good idea to have my husband load or unload the dishwasher. My Transplant nephrologist allowed me to start taking biotin for the hair but not until I was 9 months post when I was the past some of my earlier challenges with a blood clot and low white blood cell counts. Low white blooded counts prevented me from any work on our farm or being in contact with our customers, which I missed but I knew that it would eventually get resolved by my team with treatment. I knew that I needed to be patient, persevere, and maintain a positive attitude while having complete faith in my transplant team.
It is great that you have a transplant team that listens to you. I am thankful for my team, who will guide me in any future challenges as well as celebrate my joy of life.
You can persevere through this kidney Transplant journey. At some point, you will marvel at how far you’ve come.
Ladybug_05: Thank you very much for opening my eyes about all different paths people take to CKD and its never-so-easy treatment of dialysis and transplantation. I never heard an emergency hemo either. Should I shudder or be amused to hear your kidney team characterizing you or your body being so used to feeling crappy! Crap indeed. I am sure you are on your way up albeit with a few zigzags. Blessings. Jerem
I find the whole used to feeling crappy amusing, but I also can have quite a dark sense of humor haha. Yeah, I was away at school when I went into kidney failure. I was at the hospital for a possible lymphatic infection, but nobody mentioned my kidney function. The next day I received frantic calls from my nephrologist and my dialysis coordinator about my gfr and within the week I had to move back home. I went from perfectly independent to not eating and needing help with everything, including walking to the restroom within 2 weeks and got to be emergency admitted with a chest port placed and hemo dialysis for the next 5 days. My blood was rusty brown sludge too (super gross) and I had developed a cardiac rub as well. It was a very scary time, and unfortunately my kidney didn't want to wait for my PD placement (I got my chest port 24 hours before my PD port) and training. It also didn't want to wait for me to finish my fall term in college haha.
You sound like your body reacted very similiar to mine. The mood swings, anxiety, hot flashes, etc... but they did calm down or relax quite a bit for me.
Ask your transplant team about takng Lecithin. It's made from rosehips & helps me greatly with the hot flashes. You find it at a pharmacy where vitamins & supplements are. It works great for me.
I too put some weight on.
The meds are very tricky. Your transplant team will eventually get the exact mix of them that your body will handle.
But I try to just keep remembering that this sure beats being stuck in the dialysis chair for 4 hrs 3 days a week.
I did PD for about 11 months after emergency hemo for 2 months. It was rough going for a while between the hernia that I got and trying to keep my stomach issues in check. It was better than hemo, but I'm definitely glad that I'm not having to hook up to my machine every night. I'm glad that they calmed down for you! I hope that my case is that way too.
Ladybug_05, I hope your side effects lessen and you feel much bettter. I take gengraf, cellcept and prednisone. I always had side effects from prednisone, including osteoporosis, stomach problems, diarrhea. I have my transplant 25 years and it is worth numerous skin cancers, etc. Can they put you on other meds? I wish you and the others the best. Side effects are horrible!
I’ve been reading your posts as you share your journey following your transplant. First, I want to thank you for sharing your journey with us. It is truly informative and inspirational!
Second, I’m a university professor who teaches full time in an online special education graduate program. So I was pleased to hear that you’re getting back to school with an online class! This will be great for you!! Teaching full time in an online graduate program has been such a blessing for me; I can fit the many foctors’ appointments and labs into my daily schedule while still working full time. And, on days where I’m not feeling as well, I can take a break for a power nap and then get back to work. So, I’m hoping that you’ll find taking an online course will work equally well for you.
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