So thankful for a working kidney and the blessing of a Living donor.... but the meds have been almost more than I can handle. And the toll they are taking on my body is immense. Can anyone tell me their experience with all these meds and how they worked through and held on through recovery. I am 6 weeks post transplant and some days feel I'm beat. Trying to stay positive and trust the Lord it wil get better. Anything you can share will be helpful. Thank you so much and God bless. 😇
Hi... was blessed to have a kidney transpla... - Kidney Disease
Hi... was blessed to have a kidney transplant 6 weeks ago... anyone eve struggle with the meds?
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Highgfr
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Yes I had the same issues with the meds it gets better with time honestly it took about 6 months to feel better lots of fatigue
Hi Zbiguy!! Thank you so much for your response. It helps to picture a timeline with all this. Between the prograff and the celcept and all the other meds it has really set me back. Got to keep my eye on months ahead. Did you have any shortness of breath?? Thanks again!!
Yes I had shortness of breath for quite awhile and I was very active prior to transplant. They kept telling me I was not conditioned from not much activity following transplant. Turns out they were right it just takes more time as we age I just didn’t want to accept that. Once I felt good enough to start golfing in June I noticed an improvement slowly but surely. By the end of summer I was able to golf without any problems. Hope these words help because I know I was concerned it was something more.
I had lots of trouble with the meds too. The hand tremoring and speech problems I experienced the first few weeks abated by the third week post transplant. I had lots of difficulty with the blood pressure medication they put me on initially. My blood pressure was too low. So the medication was meant to elevate it. However, I had major reactions to that Med. They pulled me off it. I was able to get my blood pressure up in an acceptable range over the first six weeks post transplant. I take no blood pressure medication now. Things also improved a lot as they lowered my prednisone to the low dose I take today, just about 1 year post transplant. I didn’t notice reactions to Myfortic or Tacrolymous by about 8-10 weeks post transplant.
However, I developed dangerously low white blood cell count about 10 weeks post transplant. I had to receive Neupogen injections to deal with that 2x a week for 4 months and then 1x a week for 2 months. Thankfully I haven’t had to have that injection since July, 29, 2023. I experienced pretty severe bone pain from those injections.
In mid May I tested positive for CMV. (I was CMV- pre transplant. My donor kidney was CMV+ so I got CMV from the donor kidney.) I’m currently dealing with my fourth recurrence of CMV. The antiviral medication they used for the first 3 bouts with CMV, Valcyte, has been very problematic for me: Nausea, vomiting, diarrhea, headaches, hives, and more.
For my current bout with CMV they have discontinued Myfortic and Valcyte. That was about three weeks ago. I’m awaiting my CMV data from labs this week. But the data has looked much better over the past three weeks. 🤞 that it will continue to improve this week.
I know that these meds have taken quite a toll in my body too. My body has adjusted to the meds I take regularly. It’s the last two I mentioned that I take (or inject) sporadically that continue to cause havoc for my body. Hopefully you won’t experience either of these two additional issues or if you do your body will respond well to the treatment protocols.
Jayhawker
😇Hi Jayhawker...So sorry you have had to go though so much. Glad things are somewhat better for you. Hand tremors and speech effects are rough... I hope they fade away. I am only 6 1/2 weeks out of transplant and praying my blood cells all remain normal. Were the infusions for your white blood cells hard on you? Some of these infusions are so rough. *** And my Living Donor was CMV positive but I am not. I am so scared of getting it. Mayo says they will give my valcyte if I get it but I met a man in the waiting room doing BW one day and and he said he got the CMV and he was in the hospital for a month and almost died. That is scary!! Praying you NEVER have it again and that my body can keep it away. I am on valcyte tor 6 months and then will come off of it. I feel so in the dark about what might show up. Did you notice a sore throat? fever? runny nose? How did you know you had CMV. Thank you so much. *** ( I don't know howto make a new paragraph on this entry to bear with me ). Mayo said that once they treat CMV with the valcyte it doesn't come back.... is that NOT the case. Sounds like it isnt. ***If they stopped the Myfortic, what are you taking in its place? Can I ask you, being a year out from transplant...are you glad you did the transplant? Do you feel better now than 6 months ago? Do you use sunscreen and wear sun protective clothing? Do you still take 5 mg prednisone or lower? Do you take prograff or the generic version of it? At the beginning were you ever short of breath or have any bone pain? Thank you for letting me ask you. Trying to get some pers[ective of if I'm the only one with these struggles. Having faith and trusting the Lord that this will all get better. The Lord has been so good to bless me with a Living Donor and I and my family all feel SO very blessed... just was not prepared for all this "other" after transplant! Got to overcome it!!👍🤗
I'm really sorry you are having a rough time. I hope things start to improve 🙏🙏..as I am on the transplant list, I find these posts invaluable. Sometimes when you are wearing your rose tinted glasses, you think the transplant is the answer to all your health issues. Sometimes it brings a new set of issues. Your body has been through a major trauma, hopefully your medical team can get your medication sorted, so you start to feel better. Keep us updated and wishing you all the best Highgfr xx
Awww! Thank you so much, Ziggydoodah! Yes, that's the way to look at things and that our prayer. I know most people have it hard at the beginning but I think the level of complications is different for everyone. I asked my dr this, If in 10 years I need another kidney transplant is that allowed? And he told me that Mayo had just made a new kidney transplant age limit of 75 due to the success rate being less at that age. But for now, I will focus on getting better and finding the good. The Lord helped us make this decision an HE WILL be there through the entire journey. Hope you do amazingly with your transplant. Some people have very little problems. God bless you and thank you again.
First MAYO is a top kidney transplant center which means lots of expertise and experience there. Plus, Mayo follows an interdisciplinary team approach to patient care which will be very helpful should you develop CMV. If I need to seek outside consults to “help” my team I’ll look to Mayo to find one of them. I live in the Ksnsas City metro area.
Second, one of the transplsnt nephrologists pulled me off Valcyte 3 months early even knowing that I, like you, was in the highest risk group. Thatnn be likely got the CMV riled up early. However,Vice find some reading about this and watched a few international presentations from internationally renowned transplant physicians and infectious disease physicians. Apparently persons in the highest risk group (R-/D+) frequently develop CMV when medications like Valcyte are disconyinued 6 months post transplant. However, this is a question you should pose to your medical team.
But it should be noted that of those in the high risk group, most don’t have recurrent resistant CMV Luke I apparently do. So most have one or possibly two flare ups followed by CMV staying in check. They may have more flare ups several years later just like anyone else who is CMV+ but those flare ups may not be a problem for many.
My symptoms were fairly mild. I’ve got pretty severe allergies so atttobuted the symptoms to my allergies initially. Sore throat, mild head ache, sneezing, runny nose, snd do girth. As time passed I developed chest congestion and my nsssl discharge changes. In fact, the change in nasal discharge was different from anything I had experienced before. My coughing became more persistent and my chest congestion increased to the point that I wheezed when breathing. I was exhausted similar yo when I had mono as a university student but I couldn’t sleep. I had a little fluid retention. However, none of this was severe enough yo hospitalize me. The 2nd, 3rd, and 4th recurrences have been milder as far as symptoms go; although, exhaustion is a constant.
My bone pain came directly from the Neupogen injections/infusions. That pain was intense. It effected both shins, both hips, and both upper arms and shoulders. The infusions started in March and continued through the end of July. I don’t know if my WBC count will lower sufficient to put me back on the injections or not.
I also have several fairly severe reactions to Valcyte. Beaches, severe muscle pain and joint pain, dizziness, tired, sleep issues, and ithers.
I’m at maintenance dosing gif prednisone (5mg daily). At this point they haven’t replaced or restarted Myfortic. Instead they increased my prograf some. My kidney is surviving with Prograf snd prednisone only,
Finally some good news with my CMV data today. My CMV only elevated to 122 viral liad with the current, modified treatment plan. Then it decreased to 66. This week it came in at <35 which is the target range they have set for me. So, my immune system has recognized CMV and effectively knocked it down without support from antiviral meds. Now tye question is whether it will say down without meds. We won’t know that for several weeks. I’m certainly praying that that will be the case as are my friends and my church.
Probably the most surprising news with my renal panel data this past eeek was my creatinine and eGFR. Creatinine came in at .78 giving an eGFR of 90.7… it had settled in close to .90 creatinine with eGFR of 69-70. I’m not sure if it will stay in this higher range—I’m not taking Myfortic right now. I suspect when they restart Myfortic my creatinine will elevate some and my eGFR will settle back down to close to 70. Of course I’m thrilled with eGFR close to 70.
There are days when I second quests my decision on the transplant treatment option; not so much getting the transplant, but wishing I’d turned down the CMV+ donor kidney. However, from the beginning I’ve had such a strong sense that this is the kidney God provided for me. How can I second guess that?
But it is stressful, particularly navigating all of this with no living family. I’ve second guessed whether I need to be more directive with these doctors. Ultimately I did talk candidly with both. Thankfully that has improved their work on my case—they are working together now. But I didn’t enjoy having to take that step. Bottom line? I’ve learned a lot about myself through this. And my faith has been a constant source of strength and comfort. I sense my parents with me through this journey. (My father had CKD ultimately having in-home hemodialysis over 45 years ago. I was one of his two dialysis care partners. I literally feel him cheering me on
So, yes, I would do this again regardless of the challenges that lay ahead.
Jayhawker
🤗THANK YOU so much for sharing your story. WOW. You have really had a hard time with the CMV and I am so very sorry. And the words about your father are so special and endearing. We will pray hard for your numbers to stay in range and to not ever bother you again. YOU are a trooper. It's a blessing you did not have to be hospitalized. So sorry about the infusions... that must have been rough. Can they give you anything to help with all the bone pain? Did they keep giving you valcyte as treatment every time it came back. Did it work? *************************** I WAS SHOCKED when Mayo told me my donor was CMV+...I am not and I would have thought that would not be a good match. How can they recommend a kidney that can make someone so sick down the road. I have to tell you I cam vey concerened abut getting it and the valcyte is a cancer causing drug. Breast, brain and colon specifically. I will not accept that in Jesus name, but it is a hard read when you look it up. Already so may drugs in my system with terrible side effects....like you, I wonder if Hemo would have been the better route to stay with. I had hemo for 4 months before transplant and even though it had it's challenges, it was NOT like this. So, we come to a crossroads and make the best choice we can. Still SO very grateful for a living donor kidney but had no idea of all these horrible side effects and hw serious CMV can be. God forbid I get it! I pray I can do as good as you have and survive it. ******************* Please tell me...how did you know you were coming down with CMV?? Your BW or your symptoms?? Again... so thankful you are on the mend and otherwise doing so well. And no more Myfortic. WOW. How many years are you post transplant? Also, why did you d stop the valcyte so early...side effects? Thank you. 🤗🤗
I believe they aren’t concerned about grafting a CMV+ kidney into a CMV- recipient as CMV is generally regarded as treatable. They view the transplant, even if CMV or BK evolve, as a much better option than dialysis for patients.
I honestly wouldn’t have suspected I had CMV initially. My early symptoms were so similar to my allergies… It was my regular lab work where it showed up.
They did use Valcyte for the first three times the CMV activated. For my current flare-up, I told them I was not willing to use Valcyte again due to the extreme reaction my body has to that medication. Further, that medication hadn’t done anything but pull the CMV into target range. It did not promote CMV staying in target range. After I was pulled off Valcyte, my CMV would come back the third week I was off Valcyte.
I told them it was time to try a different approach. That led to what they are currently trying (discontinue Myfortic temporarily and no antiviral medication to see if my body’s white blood cells—CD4 & CD8 lymphocyte T-cells—can suppress the CMV.
My data with this round of CMV looks promising. My CMV viral load has gone from 74 to 122 to 63 to <35 over the past four weeks. This is a dramatic improvement over what happened in the previous three flare-ups.
In addition, they just ran a CMV inSIGHT T-Cell Immunity test to see if my body is generating CD4 and CD8 T cells. These are the specific T cells that are needed to combat CMV. That test came back showing elevated CD4 & CD8 T cells meaning that my body can respond effectively to CMV. Nothing was flagged as potentially problematic. So, I think this is good news.
I have an infectious disease specialist as well as a transplant nephrologist working on my case; although, initially they weren’t working together. They were giving me contradictory medical orders and then making disparaging comments about the other’s treatment protocol in my appointments.
So, I ultimately had to have a candid conversation with both saying that they had to begin working together. I told them each that I expect to follow the guidance of the nephrologist for renal treatment and the guidance of the infectious disease specialist for CMV treatment. I insisted that they confer with one another before each appointment with me and that they develop a single, comprehensive treatment plan that both could support.
I specifically mentioned Mayo in these conversations saying that I expected them to embrace and emulate the multidisciplinary team approach that Mayo has developed.
I also told them that I’m giving them 3-4 months to get this moving solidly in the right direction, if not resolved. I said if they were still flummoxed by my case at that point we’d seek outside consults to get some additional help.
Thankfully, they have been working together since that conversation. My current modified treatment plan is a result of their “collaboration” on my case. In addition, the T-cell test was recommended by the infectious disease specialist and then ordered following my appointment this past Thursday with the nephrologist.
Hopefully with these two working together rather than fighting one another we’ll make solid progress and it won’t be necessary to seek outside consults.
My nephrologist was much more confident about my data and my case in general this past Thursday. Frankly, she should be. My renal panel data was incredible! Creatinine .78 with 90.7 eGFR. Prior to that my creatinine hovered around 1.0 and 63-66 eGFR. That had remained fairly stable even as the CMV would flare-up.
Clearly God has protected Cindy (my donor kidney named after my lifelong friend who helped me decide to pursue the transplant and recently passed away). Thus, my earlier statement that I have no doubt He provided this kidney and continues to protect it. I’m just trying to do my best to protect it as well while I continue to adjust to these medications.
Jayhawker
THANK YOU, thank you soooo much for this breakdown. I am keeping this info God forbid I get CMV and I will e keep you in our prayers and ask the Lord to bless you with this entire situation. Love it that you are off myfortic. Wish you could stay off. I have heard the myfortic is s not as bad as prograff. And Valcyte is a carciogen and I did not know that until I researched it. I would love to try another med for valcyte that isn't a cancer causing med. At this point my labs have not shown any CMV or BK. I dont know much about BK. Is it a virus??? But they check me often. I am concerned about when I go to once a month BW that they may miss it and I won't recognize the symptoms. Lord willing He will watch over me and protect me during these months and keep me aware of it all. God has been so good and I never mean to doubt Him... these weeks have made me that way with the reactions to the meds. So many have said to give it time and I get that, but when you feel like you syiing it is hard to remember. LOL. It's amazing how you got your dr's to work together.GOOD FOR YOU! ****I love your attitude that the Lord it in this all the way. AND YOU ARE SO RIGHT. ***Thank you for your words that ring so true. Please let me know through this blog how your body knocks that CMV out on it's own and keeps it gone. We will be praying for you to never have it again and that your body will fight it off on it's from now on. PRAISE GOD! Thank you again so very much. God bless you over and over. ✝️😇🙏👍
hi, I hope you start to feel better soon. A friend of mine at work never mentioned any bad reactions to the meds after transplant - he made it seem like a walk in the park. I, however, have been nervous thinking about them. I am deep into stage 4, with a GFR of 17. There is no way of knowing how much longer my kidneys will last, but I am all approved and ready for a transplant at Tufts hospital in Boston. Now just waiting. As bad as I feel right now, I consider myself very lucky - I have 3 siblings, and a couple of friends who have offered me a kidney. My sister is the lucky winner, and she can’t wait to donate, and see me back to my old, normal self.
My friend seems happy and healthy, and acts like life is back to normal. I will have to ask him about the medication side effects. I wish you the best, and congratulations on your transplant. I am new to this website. Have a great weekend.
Thank you for your reply and for sharing. And congratulations on your sister being a donor...she is a very special person!! Even though the meds are difficult in this journey I remain so grateful and thankful to the Lord for such a gift. My surgeon told me that my heart stopped on the table for 6 seconds and started right back up when they placed the kidney and that my potassium dropped down way too low at the same time, so it was probably just a freaky thing since I have no heart problems. In his 25 years of doing transplants that has never happened. Again, thank you, Lord! Cadiology had me wear a heart monitor for a number of weeks but nothing showed up. I meet with them next week. 🙏 It seems there are some people who do better with the meds as each person is different. It has been a blessing to have this chat arena to discuss things and get others input as well as the other kidney transplant recipients you run into at Mayo...they share and I share and it is awesome. Such a blessing and is so comforting. I look forward to the upcoming months getter better and am paying close attention to the input from others that it takes not just the first 3 months but 6 months or longer for full strength and recovery. Keep us updated as to when your transplant takes place and we will be praying yours will be like your friends...a true success with no issues. God bless and thank you again. 😇✝️
WYOAnneNKF Ambassador
Funny you should ask about the Meds?!@# EVERYBODY has trouble with the meds and at the same time you are trying to get over major surgery. Zbiguy is right...takes about 6 months for your body to adjust to these new meds. Even though this is probably the last thing you want to do, you need to start taking walks. It really will start to help with your mood and your energy. I started just walking around the block and then with time walked 20-30 minutes a day.
I take Neoral (Cyclosporine) and Myfortic (Mycophenolate). I was having horrible daily diarrhea. Transplant docs reduced my dose and then discovered that if I took name brand Neoral and Myfortic it all got better. Pharmacist told me that generic forms are just a little different and sometimes that is all it takes. Anyway, October 15th was my 24th transplant anniversary and am still taking Neoral and Myfortic! No issues and am doing fantastic. My eGFR even now is 90. Give it time and things will turn around. Always report to your doctors any problems or issues you have. Always remember that you know your body better than anyone!
Take care and Congrats on your 2nd Chance at Life Transplant!
WOWOW!! 24 years post transplant. You are a walking miracle. Congratulations, a huge, congratulations. 👏👏 You have made my day and are such an inspiration. Thank you for sharing about your meds and the changes that they had to make. It’s hard to tell when the doctors may need to make a change in my meds, and I don’t know as much about it to be able to be knowledgeable about it. I am still in learning phase. I am a newbie. But am learning and want to be involved in every step of the journey. It helps so much to hear input from others who are living the dream with a new kidney. And I appreciate so much that the next six months to a year will help balance things out. It does concern me about the risks of cancer with these medication‘s, and I am praying that they will lower doses as the years go by so the risk is less. in 24 years, have you had any skin cancer? Any other cancer? Any CMV? My donor is CMV positive and I am negative. My family and I are praying so hard that I don’t get it. They have me taking valcyte to prevent it, but that stops at the six month mark. My white blood cell count and all of that is good and no BK. Thank you Lord. But again, congratulations on your success, and the miracle that you are to all those around you. If you had to say what you think is made this 24 years, so successful, what advice would you give to someone who has a brand new transplant Thank you, thank you. God bless you! ❤️❤️❤️🙏🙏🙏
First, no skin cancer or any kind of cancer. I do go to my dermatologist for a skin check yearly...more often if I am concerned about some new spot, etc. I don't usually sit out in the sun. I wear SPF50 sunscreen if going somewhere outside where I will be out in the sun.
My big advice...is to listen to your body! You know it better than anyone, and if something isn't quite right. I am sure that I have had some doctors think I was a bit of a hypochondriac. I was having pain over my transplant when I was about 12 years out. They ordered MRI and didn't see anything. My pain continued. Transplant doc finally had me see a surgeon. He didn't see anything on MRI either. Ordered another one, was about 6 months later. This time he looked at the films himself when I was in his office. And there it was...I had a hernia in my transplant incision. Had it repaired. The pain had been intense...so "stuck to my guns" that something was wrong. Listen to yourself and be your own Advocate. So important for a great long life kidney transplant!
I do listen to my doctor and do what he says. I have gotten a good repoire with my nephrologist and he not only tells me what I should do, but also listens to me.
Wish you the very best and hope things will turn around for you soon. Hugs to you and your new kidney!
😇Again, WOW! You have done so good. So glad you stood up and made them keep looking for the cause of the pain. And 12 years out!! Did they why after all that time a hernia developed? Bless your heart. Hope the surgery wasn't too hard on you. I have a dermatologist and she checked me and I'll go every 6 months unless I see something new. She wants me to take nicotinamide - a form of niacin to help protect my skin from the inside from skin cancer. I am looking into it. We have always loved the sun so I will have to take good precautions like you. *****My husband wanted to know if you mind sharing your age and if the kidney you received was a relative or friend, living or deceased? **Did your donor have CMV and have you had to deal with any of that. Sure hope not. 🙏My donor has it and I am negative. Hence they have me on valcyte for 6 months. Hoping and praying I don't get it. ** Was your donor a good match or not. TY. *****When the tachrolimis was way too high and even at the higher 8-10 level the first month I had horrible shortness of breath, so very weak and intense rib cage pain. Could not take a step, muscles were to weak to use and the rib pain was as if a truck were sitting on them. They checked me for blood clots in legs and chest and thank God nothing was there. Each time it was so bad they found my level was up to 13 and then shot up to 17. Thought I was going to die. Saw the dr after the highest number and he reduced it down and now I will get to stay between the 6-7 range...not the 8-10 or the 6-8. SO GRATEFUL. I wonder how the dr's decide who is to take which medicine to fight off rejection. Is there some formula they use or something in the bloodwork that says one will work better than another? ************ I don't know if the generic tachrolimus/ prograff is better to take or the myfortic in order to keep the kidney out of rejection the best and for the longest. But, we will have to trust the dr's to some extent and do like you said....advocate for myself. Thank you SO much for sharing and for your input. Your courage and example are inspirational. YOU should write a book about your transplant and the many experiences and insights you have. SO Amazing. It sounds like you may go forever with your transplant and it the most exciting news I have heard in a looooong time. Will be trying our best to take care of the gift I have been given and try to look past this rough beginning to the years ahead. Thanks for answering all these questions...will try not to have too many more. God bless you always and again..you are amazing! Big Hugs to you!!😇👏👏🙏🙏
I had
My kidney transplant was in January 2023. It is almost 10 months now and I had issues with Tacrolimus and was changed to Envarsus which is once a day instead of twice a day. It took months to get the dosage right so at times I was taking too high a dose which gave me tremors, blurry vision, rapid heart rate. Now my hands are not trembling and I can actually write and sign my name. My blood pressure has gone down to normal and blurry vision is gone too. I had low phosphorus and magnesium after transplant so I had to take supplements until my body went back to normal levels. I also changed Cellcept to MyFortic which I tolerate much better. My hair started falling out 6 or 7 months after transplant which might be from the 5 mgs of prednisone I take everyday. Now I take BioSil to help with hair loss. It takes time for BioSil to work so still waiting for it to stop. I have more energy than before transplant and go to the gym as many days as possible to get stronger and stronger. All in all, it is worth everything I am going through to have a new kidney donated to me by a good friend. It is truly a new lease on life. I was told it takes one year to fully recover and get back to a more normal existence. Just follow doctor’s orders, take your meds and don’t be afraid to ask questions about any issues you might have. You will see progress as each month goes by. Congratulations and good luck navigating your recovery.
Hi Jesselizzard!! So excited for you having a new kidney. It sounds like you have a whole new lease on life now that you are this far along. I can’t thank you enough for sharing everything you did about your journey. It truly helps. And it really helps to know the side effects you experienced because it seems to be pretty prevalent with these medication’s. Can you tell me at what point your doctors decided that the medicines were too much for you and they switched you to other meds? I appreciate it. I have had some major hair loss already, and was hoping I can find something that will help me restore it. I will check into what you have mentioned and hopefully it will do the trick or at least help. Lol. Not used to this look!! I know I’m almost 7 weeks out now, coming this Tuesday, and I’m a newbie at this. But I hope that I can expand my horizons and think more positively about things calming down with the medicines. I truly had no idea they would affect me this severely, and made me wonder if I had done the right thing. my living donor is a wonderful young man and such a blessing. Me and my family feel so incredibly blessed, it is a miracle that I got a living kidney! It’s not something I will ever take for granted, and want to do everything I can to keep it working for a long, long time. Again, please know how much I appreciate your input and your sharing your experience. It also helps me know how to talk to the doctors when I get to the point I can’t function. I was afraid to tell them it was too much, because I didn’t know I had options, but in talking with some of you, and has shown me that communicating to them is the best plan of action. So thank you so very much for that. I pray that you have continued success with your kidney transplant, and that the years ahead are all a blessing for you and that you stay in very good health. My living donor has CMV and I do not, so I’ve got to watch out for that. I hope and pray I don’t get it or anything else. Right now my white blood cell count, and hemoglobin, those things have balanced out. So thankful. Lord, willing my magnesium and phosphorus will do the same. I had a reply that said she was 24 years out on her kidney. From transplant. Is that not amazing. Let’s pray that will be us 24 years from now. God is so good and all things are possible through him. We give him glory and praise for this opportunity. And if I may ask you, is the cancer risk any less with the meds? They changed you to than the original ones that you were on and then I take? It sure would be nice to take meds that are not as high risk. Thank you!! God bless. And thank you again. ❤️👍🙏
Hi Highgfr - Within the first 3 weeks, I told the nephrologist at my weekly appointment that I had the shakes, especially in the evening after my 2nd dose of Tacrolimus and cellcept and that I was very tired and overall not feeling well. The doctor advised me about Envarsus ( a newer drug) which is a form of tacrolimus but it is a time release so it doesn’t go into your bloodstream as fast. So, I was interested and told him to prescribe it for me. I definitely started to feel better in the evening not having to take the tacrolimus, just the cellcept. The doctor also told me about MyFortic (also a newer drug) and that it had less side effects than Cellcept, so he prescribed it for me too. My transplant surgeon did tell me they keep the doses of these 2 drugs on the lower side to prevent getting cancer or other problems from taking higher doses. Tacrolimus level needs to be between 6 to 8. At one point in the beginning it went to 12 and I felt terrible. They quickly reduced my dose and I felt better after a few days. Always wear a hat in the sun and cover your arms and legs because you can get skin cancer. Sorry about your hair loss, I am dealing with it and hoping BioSil works. Hope you give it a try. I purchased it on Amazon. I am so happy you were fortunate to receive a kidney from a living donor. It gives you a better chance of your kidney working for many years to come. The first month was rough, the second month better and third month, I started feeling like my old self. The fourth month I flew to Idaho to attend a wedding and felt great the the entire week. keep the faith and always talk to your doctor about any concerns you have. I definitely recommend changing to Envarsus and MyFortic if you are taking The same drugs as I am taking. please feel free to contact me if you have any questions or just need some reassurance.
AWWWW... You are the best! Thank you SO much for explaning all yuou have done and been through. I can relate to you so well. I will talk to my dr's about the Envarsus and if I rememer right he had mentioned it the other day when my level was up to 17....and I thought I wa dying. When I stopped the pills for a day and they reduced the amount I felt sooo much better. Not like normal but better. Less meds the better in my book. So are you no loner on cellcept as well. ????Any side effects from the myfortic??? Hope not. I can't thank you enough for sharing so openly and it is so greatly appreciated. It helps more than I can say. I've been so scared cause of being so ill from the meds and weak during this time I was not sure I had made the right decision. But after reading and hearing what others are dealing and going through...it calms my spirit and teaches me I am not alone in handling all these side effects. I KNOW the Lord is with me and will get us through it al if we will just trust Him, but in my hardest moments I struggle with it and know better. They cannot prepare enough before transplant for all this. I think they try, but these meds are unpredictable. I will look on Amazon and check out the Biosil. Lord willing you will see some results. Check out niacin and biotin, I understand they are also hair growers. Hoping something will work as I am losing brush fulls. AHHHHH! No likey! LOL. So, you kep on keeping on and I will to and let's stay in touch. God bless you and watch over you always! Hugs! 😇✝️ ps: let me know if you had any side effects from the myfortis. TY
Defo can say its an issue, the meds can be a real pain, but my experience is that I got used to then, if I am being honest I think I was fitter and healthier when on dialysis, but it is so easy to forget how bad you felt etc. I had my transplant and the function stabilised at around 28% so not like a new kidney lol, but super appreciated none the less, had 5 years dialysis free so have been able to holiday normally, and fully embrace life.
So my advice, try and do whatever you can to recover any fitness, and the more time outside the better. if you have any questions , feel free to message me.
Awwww! Thank you so much. Trevski!! Your words are so appreciated. I will try to focus on what you have just said. More exercise and getting out more. I will be seven weeks post transplant this coming Tuesday, so I am more than ready, chomping at the bit to get out and do more. I can drive a little now, And I am so thankful. Got to make sure we take the highroad and stay positive, thankful and encouraged. I think if we can keep some of these medicine levels in the right amount, I will be able to function better. Actually, I had no idea these kinds of side effects would be so severe. It’s been an eye-opener. But, God has been with me every step of this journey, and family and friends, and that makes all the difference. Thank you for being such an encourager. 😇 Hope the months ahead for you are filled with wonderful health and the holiday season is a blessing for you. I’ll keep you updated and thank you for being such a resource. What a blessing. God bless you and be safe. ❤️🙏🙏❤️
Highgfr, I am 1 year post transplant and still having issues with the Envarsus XR tacrolimus as the lab levels keep going up, I change the dose, then they go down too far, then I change dose. A yoyo! Any ideas on how to manage the tacrolimus med? Very stressful for me. And I started to get serious anxiety and depression and started meds for this. Plus I have scar tissue from the Peritoneal catheter being pulled out. It has been a rough year even though I am grateful for the kidney. They do not tell you about med issues and any complications that may come. God is seeing me through. Take care and ask your doctor all and any questions you have. BB
Hi Aloha49!! Bless your heart. I know exactly what you’re talking about. My tacrolimus got so high. It went to 17. I thought I was going to die. Just two weeks before that I went to 13 and the same. I couldn’t breathe, I thought my ribs were going to cave-in, I couldn’t stand , my muscles wouldn’t work. It was just the worst feeling in the world. I told my husband, I can’t go on like this. Got into Mayo the next day and saw the doctor and he reduced the dosage and it started coming down. They stopped me from taking it for a day and a half and then resumed it down by an entire milligram. Today my level came in at 4.5, so I’m going to add half a milligram back to get it to the 6 to 7 range. My doctor has approved me being between 6 to 7 range instead of 6 to 8, because I cannot risk it going out that high again. No, no, no. I am down to 5 mg prednisone, and it’s better, but I still feel the effects. The myfortis has its own group of side effects, but I don’t seem to feel them as strongly. I do have some tremors, and sometimes it feels like I’m fighting just to get my words out, and I’m fighting an overwhelming feeling of no hope, and I have never been like that. I am a positive, on the ball, encourager to others, kind of person, and I refuse to let that get the better of me. My reliance is in Jesus, and I know that he will be here with me through all this, and as strong as my faith is, it has taken a punch. It made me wonder if the four months I spent on dialysis was better than a transplant. But they all have their issues and their own set of problems and risks. So, I choose to believe with time, that this will balance out, to trust my doctors, to speak up for myself, and be an advocate for myself, to trust my family and friends, and especially trust in the Lord. We are not alone in this. There were so many other kidney transplant recipients, and we all have our own set of challenges. Let’s encourage one another, let’s hang in here together, let’s trust in the lord together, and that’s believe our future will be bright and blessed. Will be praying for you, and that your levels will reach a steady amount so that you can function better. And feel better mentally and physically. Mental and physical is the battle. You’ve got to do what we have to to keep that up and moving forward and positive. we are all in this together. Thank you so much for sharing your journey and know how much it means to me and my family. We have so many questions now, that we did not have prior to transplant. These things have been eye openers and shockers for sure. But, here we are. We have to make the best of it and encourage one another. Things will get better. Yes they will. Please keep me updated how you’re doing, and how they get that medicine regulated for you. Everything I and others go through and you go through, can help someone else. So again, thank you so very much. God bless and stay safe.ps: had a reply from a wonderful person who has 24 years out with the same kidney. Boy was that an encouragement. I sent her some questions back and I hope she’ll let me know what all has happened during those 24 years. I asked her if anything was showing up during that time like CMV, cancer, skin cancer, etc. 24 years is amazing. Even to get half of that would be a miracle. So, be encouraged. Her reply was such an inspiration.❤️🙏❤️🙏👍👍
Highgfr, thanks so much for your response. Yes, I have become more spiritual and counting on my church friends for great support. I have turned to the Lord and count on it. Blessings to you. Would love to hear how you move forward too. Not sure how to keep in touch. Staying positive is key and difficult at times, and exercise outside is key. Go outside even if you don't want to. Tell yourself "I can do this and more". God bless, BB
YES! Awesome recommendations. Thank you and congrats on your amazing relationship with Jesus. That right there is everything. I do not know where we would be without the Lord and his love and presence. He is SO good and is always there. It's the flesh that is weak and gets into fear. Have to fight it off and totally keep trusting in Jesus and lean on him. We will keep you in our prayers as well and please so the same. We need all the prayer we can get...PRAYER IS ESSENTIAL! I will keep up with you on this blog and we can encourage and pray for one another every day. Yes... I CAN do this in Jesus Name. You are a blessing....thank you so much! God be with you and keep you safe and well. ✝️
Congrats. Six weeks isn't even long enough for anesthesia to get out of your system. Rest and take one day at a time. I still have at least 3 more years on the wait list.
Thank you so much! Will do and will be praying your name is called any moment now. God bless you and may he prepare the way. May he work a miracle and bump you up sooner. Will be praying. 😇 ✝️🙏
As others have already stated, it takes time. Everyone is different, for me it was about the 3 month mark I started to feel more myself and by 6 month was doing pretty good. There is a lot of "tweaking" and changing meds and dosages to start to get the correct combinations for you. Your body is changing and adjusting to this new "foreign" object in it. I started on 19 different meds and I'm currently only on 8 (11 months post transplant). Exercise/walking daily starting slowly and building time helps a lot and will give you more energy over time. Congrats on your new kidney and best of luck!
Hi Hawaiilover!! Thank you so much for writing! So glad you are doing so well and thank you for such encouraging words. ***Can I ask how you handled the Valcyte and if you are on prograff?? Any issues with CMV? The hardest for me has been the Valcyte side effects and the constipation post transplant that has lasted 6 weeks plus. (Meds have caused all of it and especially the prograff and the phosphates)The start of the high dose prednisone was just terrible and I did not even recognize my old self. Thank the Lord I am down to the 5 mg maintenance dose and am praying they will even reduce that over the years. And a huge congrats on being down to 8 pills. YAY! Thank you Lord! That's fantastic. Now that they have lowered the prograff dose it is a little better and I should be eble to have enough breath to walk more and exercise. I am SO very thankful for that. May I ask what meds you are on since you are down to 8. Thank you again so very much for your advice and for sharing. God bless. 😇🙏😆
I fortunately have not had issues with CMV and gave not taken Valcyte. I did also have issues with constipation after transplant for almost 3 months. Other meds can cause this too. I was taking 2 different meds to help with it and added extra fiber into my diet. I am on the generic for Prograf(Tacrolimus)which they have tweaked dosages many times since transplant depending on what my level is. I started with labs 2x/week and gradually decreased and now get then monthly. Hopefully will go to every 3mths after my 1yr check next month. I'm currently taking Tacrolimus 5mg,Tacrolimus 1mg, prednisone, mycophenolate, aspirin, Vitamin D, Calcium Carbonate & Sulfamethoxazole-Trimethoprim(bactrim)
👏👏WONDERFUL!! So glad you have not had CMV!! ******Was your donor positive for it?? ****That is my situation. Praying it skips me all together....pleeeease Lord. I started riding the stationary bike yesterday with more tension on the pedals, wore me out but I made 20 minutes. Will build on that. Walked some for about 15 minutes and will build on that. Hoping to do some 5 pd to 10 pd weights but I have to watch this fistula. *** Did you have to take any anit- virals at all the first 3 to 6 months? ******* Congrats on being 11 months out....that's awesome. One more week will make 2 months for me. I have got to be patient...and in the back of my mind these medicines scare me but it's better than the alternative. *****Have you had any problems with magnesium or calcium bw? Thank you again so much! 😇
I can understand the struggle when it comes to the unending medications, keep pushing you will get used to it with time xx
Yes Valcyte exactly it’s quite a struggle
Hope you are doing ok xx
Thank you so much. And I hope you are OK. It’s been a blessing to hear responses and that I’m not the only one going through these reactions to the meds. It can make you feel like you’re the only one going through it! Everyone is struggling through it and finding their way, and that is as encouraging as it gets. Please take care of yourself, and I hope each and every day gets easier and easier. Praying for you. God is ever faithful, today and always.✝️🙏🙏❤️❤️😇😇😇
Thanks lovely, where in uk do you live
Hi Loraqueen!! Hope you’re having a blessed day and a feeling good day!! I am in the US. I’ve been blessed to live in Jacksonville Florida where there is a Mayo hospital and clinics. The dr’s are trying to balance out these meds but I can’t breathe well and am so short winded every time I move around. Cannot figure out which med is causing it!! Would love to stop the Valcyte but am afraid of getting CMV. Have you had any shortness of breath along the way?? Thank you SO much!’ ❤️🙏
yes I battle with shortness of breath mostly at nights it’s so annoying lol
My daughter had a hard time taking all the pills. She is back on dialysis after her transplant rejected after 8 years. He is not excited about getting a new kidney transplant at this time. She has multiple issues. Not wanting to take the pills if one item. But, the transplant opens up a whole new world. Not to mention time. hahahahaha Don't think when it's time to take the pills. Thinking too much about anything will create more of it. Change the channel and put on some happy music and dance or go to the movies or have a party. Nothing like planning and having friends over. Push yourself. They are having Clinical Trials on Stem Cell Research.
Check that out. Stay busy. Remember stop thinking about the pills.
Happy Holidays!
Hi purifire7777!! Thank you so much for your response. I am so sorry to hear that her kidney rejected after 8 years. Bless her heart. That must have been so hard.***** What caused the kidney to start being rejected, especially after all that time. Did she stop taking all the pills? ***. I have always been a postive upbeat, look for the good kind of person, but ever since starting these medicines I feel like there is a cloud over my head every day and a feeling of dread. lt is terrible. I got to the point where I didn't want to take them anymore about 6 weeks out. But my husband and family where all over me about feeling that way and with the Lord's help I am still taking them. Worst part about the whole thing besides the terrible constipation. And I have to wait and see if CMV will surface after they take me off of Valcyte at 6 months. God Forbid!! *** Is your daughter doing ok since starting back on dialysis? Do you think she will do another kidney transplant? Again, thank you ever so much for your encouragement and wonderful advice. God bless!! ❤️🙏
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