My husband is five years old this month, post-transplant. He is struggling with the medications he has to take; often, he just shared over this last weekend that he feels exhausted and can barely get out of bed, but he pushes himself to do so. His sex drive has tanked, whereas before, our love life was always very active. He is healthy, eats well, works daily, and has returned to his usual levels and blood work well. But he also shared that there are times he has stopped taking his medications for several days, and he feels better, has more energy, and his sex drive has returned.
He has talked to his doctor but he doesnt feel he is being heard, he feels they are just pushing all these drugs. Has anyone just stopped taking their meds several years out? Is there something else he should be doing or trying?
Written by
kaiti1965
To view profiles and participate in discussions please or .
I'm not convinced I need the steroid for ever (almost 2 years post transplant). I will say that if the Dr isn't listening, it may be time for a new Dr. That said, I have heard of people post transplant on very low doses (and maybe only one). But those patients are 20+ years post transplant. My Dr has worked with me to try other meds etc to releave symptoms.
The meds do come with side effects which you would both know about and that needs to be addressed by his team and communication needs to be good in order to make progress …for instance I stopped taking prednisolone and feel much much better but it took a year of talking to persuade my team .
If he’s on that it might be one aspect of his drug regime that could be adjusted but only with tests and advice.
My suggestion is to work on the relationship with your medical team first off ,
Encourage your partner to talk to you or a councillor about the burden of pill taking and the transplant jn general.
Poor libido will be hugely upsetting after a good sex life … A huge amount of how we feel and how our body responds can be made worse by negative thinking and he could be in a spiral.
Starting a daily exercise regime no matter how small daily is always the best thing we can do as a starting place … it turned my life around .
Please do not stop taking the meds ever!!! Both myself, and my son are four years out on our transplants, miracle story, but another time, I can tell you that both me and my son who is in his 40s have benefited greatly by receiving hormone therapy. I am a 65-year-old woman who is on hormone replacement therapy as my nephrologist informed me that during dialysis basically all your hormones are stripped from your body. My son is now receiving testosterone, which is made a huge difference in his energy level and also his sex drive.
Not sure what medication your husband is on, but if it’s cyclosporine, it is well known that that causes fatigue and also anemia, I am on cyclosporine, my son is on tacrolimus, my son is on prednisone, I got off prednisone at year two as it was really causing me mental and physical problems. That was done by upping cellsept.
If it’s a communication problem and not feeling heard by , I assume his nephrologist at this point, time to shop around! Just remember you have to be your own advocate. No one is going to speak up for you unless you speak up for yourself.
”Pushing all these drugs.” You mean the ones he takes to keep his body from rejecting his kidney? He skips doses, he will have chronic rejection and lose that kidney. Chronic rejection (not acute) is entirely due to transplant patients not taking their drugs as prescribed. Of course the drugs themselves can damage the kidney too over time , even if taken as directed. That ‘s just a known side effect.
If you stop taking your meds all at once, you get a very high fever, have a lot of pain and have to be hospitalized. It’s dangerous, I know because I asked my doctor very early on (month 4) when I wasn’t sure I was going to be able to handle the drugs. I heard that and I’m like, OK no way am I risking that! T hey say transplant gets easier after the first year usually, and for me it did.
It is also his life and he chooses what he puts in his body. If he flat out demands they change his meds, they pretty have to I would think, especially if he threatens to stop taking them. That’s going to make it highly unlikely he will get another transplant should he ever want to try again though.
I have heard of patients being OK with stopping steroids after years and years, after consulting with the doctors. I think that’s a reasonable request. Know that patients who do stay on steroids, tend to keep their kidney longer.
But the other drugs…that’s a recipe for disaster. There are alternatives. Tacrolimus is simply the most effective anti rejection med that exists, cyclosporin below that. As many was 40% of patients reject their kidney on sirolimus or everolimus. I have to say I”m not sure where belatacept falls in relation to effectiveness. But GFR actually improves over time with belatacept m and declines with cyclosporine. I’ve done a lot of reading of scientific articles. I personally can’t have belatacept since I’ve never had EBV pre-transplant, even though 90% of population has. Not every area has belatacept. available it’s a once a month infusion - sorry you may already know this.
Skipping doses is a going to lead to going to back on dialysis. You dont get to go back to a normal life. Nothing has been cured.
I was evaluated at one transplant center which simply does not put patients on steroids post transplant period. they feel negative effects outweigh the benefits. However, as I said, I read many studies online that point to patients taking predniose have a better chance of not having rejection.
I received a kidney transpknlant at the Mayo Clnic. After one year they were willing to cut y predniose dose from 5 mg to 2.5 mg. However after one year Mayo discharges all of their transplant patients to make room for new ones I had to have a transplant nephrologist so I went back to the center where I was first listed. They said they wanted me to stay on 5 mg, for life. I’ve agreed, for now. As I said, predniose decreases your risk of rejection. I want that security for now I’ll stay on he 5 mg, But eventually, we nay have a coversation about reducing it Not yet.Not yet. And never about stoping those other drugs. Stopping those, sure fire way to lose your transplant.
There are plenty of people who take everolimus and sirolimus. The complications of the mtor inhibitors have to do with two factors. 1) timing and 2) sensitivity. In the early days of rapamune (sirolimus) doctors were prescribing it in place of tac or cyclosporin right after transplant. These drugs are very ineffective in preventing acute rejection within the first 12-24 months after a transplant. However, these are commonly used in combination with the CNIs (tacrolimus and cyclosporin) to reduce the side effects of the CNIs after the acute phase of transplant. 2) there are many people who have significant side effects from certain drugs. The mtor and CNIs are no exception. Some people react very poorly to the mtors, but do perfectly fine with the CNIs for some it's reversed, they cant tolerate the CNIs but do well with mtors.
Unfortunately, Beletcept was found to be no better, in some cases worse than, tacrolimus in preventing rejection despite the increase in GFR and decrease in incidents of diabetes. The results were so drastic they shut down the most recent clinical trial in 2022.
The use of prednisone use is very specific to the donor and recipient. Individuals with high scoring mismatches (4/6) from deceased donors typically require long term prednisone, while recipients of living donors from low mismatch (2/6) can get away with either steroid-free, or reduction in steroids in the first 3-6 months. Unfortunately some of us who have been on steroids for years have a high risk of rejection if we try and reduce or eliminate the prednisone. So in most cases, it's not worth the risk.
You are 100% right I apologize. I was writing late at night. I recalled my transplant nephrologist saying they had something like 40% rejection but I woke up this morning and remembered it was 20%.
My transplant nephrologist and my transplant RN said if they had used a diferent induction drug on me right after surgery, I woudln’t have needed prednisone long term (Or not at all, I can’t recall exactly) and they would have tapered me off very quickly.
I received what they call an incompatible ABO transplant. I’m type B they gave me a type A kidney. Apparently there is more than one subtype of type A don’t ask me to explain. I had zero antibodies in blood. I only matched 2 of the 6 antigens. Yet they were willing to cut my steroids last from from 5 mg to 2.5 mg and I said. They said they truly can’t take me off entirely it would be too dangerous.
May I add, medicine is not an exact science and we all have our own unique chemistries. We don’t all metabolize drugs the same, They gave me a genetic test and apparently I’m a rapid metabolizer of all drugs that involve the CYP450 enzyme (or whatever it is I forget) and that’s why I was requiring gigantic doses of tacrolimus to get a therapeutic drug level.
Hi Kait. Post transplant medication is complicated. The symptoms you describe sound like an iron deficiency. I was feeling tired and sleepy all day. I now take an, over the counter iron supplement and I feel much better. Also blood pressure medication has been a problem so I don't take it.
I would not stop the anti rejection medication without medical agreement.
This mad me a bit mad. He wants to spit in the face of the biggest gift he ever got.
How long was he on dialysis? Or was he? Because that is where he is headed. You think he has problems now? If he loses the kidney for not taking his medications, he will be on dialysis for life. I will do just about anything right now to get a transplant. Intimacy comes in many forms and if the reason he wants to lose the kidney is over sex, well, that is really a shame.
Change your doctor if he is not listening. But first, go see him and say, "Look Doc, I do not feel like I am being heard. Tell him he is tired, run some blood tests and see if he is anemic. Have him do a medications review and see if there are thing he can change.
Just stopping the medications WILL cause a rejection. You both agreed when he was transplanted to take care of it and himself.
Right on! Wasting a kidney is just wrong and disrespectful of the donor and all the doctors who worked so hard. People will do anything for kidney. If it was legal to buy one, heck yes I’d go into poverty to get one. And yes, I can understand why it’s not legal, and I would never offer to pay someone illegally. Having said that, If he is that miserable, like someone else said, he should change doctors to find one who will listen and work with him. And there are other drugs, though they are so reluctant to change what THEY see as “working great.”
My intent was not to make anyone mad but to get feedback. I'm sure my husband isn't the only one who has felt what he has. This caused a massive argument about him not telling me he would forgo his medication "to feel more normal" rather than constantly tired and agitated. I was not aware he had done this at all. I agree; this is a gift. We need to respect it and treat it as such. He is bullheaded and hates change, but the last few weeks have been rough. He goes to work, comes home, barely eats, and sleeps. Rinse and repeat are our lives these days. Then there are days he seems to have more energy. We both work full-time, as we are too young to retire, and neither would know how not to work. The two years before the transplant, he continued to work when he felt he could. I encouraged him to stop working and lets deal with his health. We are a team.
You both might benefit from counseling. Not trying to be mean. He is being very selfish to you. You have been by his side all along. And now, you probably feel shut out. When someone is suffering in their lifestyle, it affects all that are living with him. If he is that tired, ok. The medications are hard. But he needs to speak up and get what ever help he can and with your support help to heal. He is going to lose that kidney without the medications. It might not be tomorrow or the next week, but it will reject. Why do you think they give him so many medications.
You did not answer about dialysis. If you have not done it, go to a center and drag his selfish butt along. it will be eye opening. If you think he is tired now..... holy smokes...wait until he is tied to a machine for hours. Think he feels bad now???
And yes, it is going to make people furious who would do anything for a kidney. This is the rath he will face.
Marriage is hard without effective communication. You know your husband better than any of us so perhaps work with him, and a therapist if possible, to help him understand your worries about him stopping medications (extremely high risk) and your unconditional support. Medications can be successfully modified, although it takes several attempts and other modalities (physical therapy and nutritional intervention, for example) to minimize side effects while upkeeping their efficacy. Please be patient and work closely with him and his team.
Please encourage your husband to take his prescribed medication every day! I am 19 years out and have only forgotten to take my pills 4 times (by accident). I have done extremely well, and my kidney and pancreas transplants are still functioning like normal. I am convinced that a big part of that is because I rarely miss my meds. He should continue talking to his doctors or seek help from other doctors, but keep taking his medication. Not taking his prescribed meds is a sure-fire way to lose his kidney!
Hello kaiti1965, My spouse since day 1 taking the many medications after his kidney transplant Nov 2018 has experienced everyday many of the side effects from mostly the antirejection medications and he takes 3 different meds plus other meds for other issues non organ related. He was diabetic before the transplant and these meds appear to make the glucose very difficult to regulate and he used to regulate his glucose very well pre transplant and now is on 2 different insulins when he was on one before. In the nutshell, he felt better before transplant and his GFR was 13%. He never has yet regained energy, the body tremors not just in his hands but entire body, his depression is much worse and mood swings too. I could go on but won't. His doctors know all about this. THe first 14 months after his transplant he had assorted problems like rejection of organ, low hemoglobin, CMV to name a few and after 14 months of changing meds and doseages things improved with his blood labs for the first time, but everything else worsened and is still not good. He never was on dialysis. Add covid19 to the mix and our lives are not what we thought it would be like post transplant at all. Rarely on this forum does someone write about this topic I have learned since writing on it starting 5/19. My spouse has never missed a medication dose. Your husband may wish to quickly talk to his doctors about what he is doing, he may be causing him serious harm, but I don't know all the details on what can happen not taking meds. I truly hope you write back on what is going on. Take care and I truly wish you both well. I understand.
The fact is, some patients do regret getting a transplant and end up sicker than before. I asked my transplant nurse if patients she ever talked to regret getting a transplant and she sais yes. At my third week I really, really regretted it and was very depressed - at least I knew what to expect on dialysis. That passed after a couple of weeks fortunately.
I appreciate your honesty in responding to me. My spouse at age 30 on his bday was diagnosed with Hodgekins lymphoma while he and I were both in the military overseas. He says that was a picnic compared to all he endured with that cancer journey before going into remission 2 yrs later on. DUring this journey is how we found out he had PKD and it was genetic via a CAT scan. What he has been going through and me glued beside him for support is the most difficult ongoing never stopping journey we've ever gone through in life . We've been married over 44 yrs and still trying to figure out how to move forward. There is no normalcy in our lives especially with covid19 all around the globe. We are just out of ideas and I feel we are pretty smart in dealing with adversity. WE realize this kidney is indeed a gift and sometimes the receiver does not get a good outcome to live a life better than before the surgery. Again ,thanks for your honesty. I rarely hear that from people anymore. I could write a book one day about our journey.
You’re welcome. I do mask everywhere and get regular boosters (every 4 months) and have never had Covid.
Recently I went on vacation (drove there) for three days which meant staying in a hotel, breakfast in room and lunch and dinner both in outdoor restaurants. The whole time I was there I only say two other people with masks, a couple who were speaking Japanese to each other.
My own family doesn’t get it. My sister insists Covid is just like the flu. I informed her a lot of people die from Covid. She said a lot of people die from the flu. I told her flu has a 0.5% mortality rate and Covid has a 2% mortality rate. That was the end of that conversation. My mom age 84 was terrified of Covid until she got the vaccine. After than, when she went on a plane she resented being told to wear a mask.
Someone else told me they just couldn’t breathe with a mask and I pointed out surgeons wear masks for hours.
I have my books, my cats, and a couple of friends who did not live in this state. I have one friend who comes over often, and guess what, we both wear masks in my own house. Recently her son age 20 who lives with her got Covid. Fortunately she and her husband didn’t get it. Oh - they did originally get vaccinated but now they both refuse to get boosters because she thinks the government is experimenting on them. Sigh.
Folks I’ve had 2 vaccines and 5 boosters. I seem to still be here. Do I really really miss being with other people? Yes. Am I willing to catch covid and risk losing my transplant? No I am not. I don’t care if I miss a funeral or a wedding. I currently have no plans to fly ever again. Yes, there may come a day when I might. But they’re all getting together for Thanksgiving and no way will I get on an airplane and it’s too far to drive.
And yes, three weeks post transplant I was so depressed I called the National Suicide Hotline. No, I was not planning on killing myself. But I was so miserable no one else was going to believe how awful it is when you don’t see a way out - I was convinced transplant was not going to get better than this, and I had no idea the meds would be that hard.
By week 5, I had pulled myself out of despair and realized that I did want a transplant, there really was no going back safely anyway ( since abruptly stopping all meds is very very dangerous and also entails a lot of pain and suffering), and I was just going to make it work.
I am really sorry to hear about the lymphoma. I just had an incredible conversation with a 86 year old who had lymphoma about 12 years ago. She secretly took Kung Fu lessons for two years and visualized herself on a desert island, killing cancer like she would a person, over and over. She’s still alive today, despite what the doctors said would happen to her, and convinced that being able to imagine defeating her illness with martial arts is what kept her alive.
People do die on dialysis while on the machine, right in the dialysis center in front of other patients. I almost had that happen in my own center. The tech yelled out “Crash cart! Crash cart!” And they rushed it over there. I saw another woman start vomiting a couple minutes after they put her on the machine, they took her off the machine and she left ( on a stretcher which is how she was when she came in.)
No one knows what life holds in store. We make the best decisions we can at the time. The fact is that statistically, you live longer with a transplant than on dialysis. Who doesn’t want to take that chance? Unfortunately it wasn’t the happy ending you were trying for.
Sadly, as hard as a transplant has been on your husband, dialysis is generally even harder. I wish the implantable mechanical kidney was available today - that would be very helpful for those like your husband who are having a hard time with meds, CMV, etc. Maybe that will happen some day.
Thanks for writing me Darlenia. I agree with future things. Right now after almost 6 yrs waiting for improvements to show up , we are both just worn out emotionally. Thanks for your caring spirit.
So sorry to hear how down you feel. Has your husband been prescribed antidepressants? Sounds like they could at least get him to begin feeling a little better and more motivated to go out more.
He has said he will never do dialysis again, again this caused a hell of a fight this last weekend. I said we will do what it takes to keep you healthy, and keep seeking help and direction, but we are not waisting this life by giving up. He shared with me from his perspective the years of dialysis and what it felt like. How broken he felt. I said well, do you feel worse now or then, he agreed diaylis felt like walking death. There you have it. Mess around with your meds, loose this chance and gift of a kidney. I didnt sign up for a husband to waiste this one life we have, but to be there to support the journey.
He is lucky to have you as his support. The decision to have dialysis is up to each person. You have the right to refuse medical treatment of any kind.
I am wondering with the glucose issue if there are different drugs he can take to not affect the levels so much. I am not a doc nor do I have a transplant, but I do know they are making better medications and getting people off of prednisone to switch to a newer drug. Ask your doctor. And if they say no, then look for a second opinion. I know some doctors do not like change or being asked to look into a different formulary. That is their problem which translates into you not getting something better.
I’d recommend evaluating your body for other issues; low or high thyroid, hormone misalignment. I wouldn’t assume it was the kidney anti rejection which cause the issues and I wouldn’t play around with dosage and frequency without medical supervision, given once rejection states, it’s a pain to get back under control. In my case my nephrologist wasn’t testing for hormone changes, but fully supported me seeing an endocrinologist once I brought it up. Should he had brought it up? Probably. But we are all human, I’ll hold him accountable for kidney stuff and advocate for myself to see other specialists.. playing with immunesuppressants also makes it harder to deal with eventual infections; bacterial or fungal or viral. I am sorry your doctor isn’t listening to your husband. Hopefully that improves or you can switch. You can also point blank say “I’m not feeling heard”. My father had my disease, was English and thought doctors walked on water, he’d never advocate for himself. We were in diff countries for most of his latter years and I wish I could rewrite and advocate on his behalf from a better educated place, (my sister tried) but this brought back memories of him trying to stop taking his meds too. Obviously your situation is different but of all the paths I can’t fathom how not taking them would prove productive. Maybe joining a local community of post transplant patients might help too.
Stopping his meds is the worst thing he can do!!! His donor is his HERO and gave him a 2nd chance at LIFE. If he goes into rejection because he is not taking his meds, he will never get another transplant!!!
He has to stand up for himself!! See his doctor NOW and tell him honestly what is going on! If the doctor still doesn't hear him, find another doctor. This is his LIFE and he needs to lead a great one in honor of his donor. Maybe they need to switch his immunosuppressants or lower the dose. Please, please....just don't stop taking your meds. Once you start to reject your transplant there is no going back!
Please don't stop taking the meds. I'm on tacrolimus and mycophenolate and 5mg of Prednisone since that was the drug of choice in the late 80s when I had my first transplant. Also take a blood thinner which I can feel. Now 66yo fatigue has taken over. Had long discussion with doc in March about what's aging vs meds. He thinks 50-50. Asked transplant doc same thing in June. He agreed and told me of other older patents who feel the same way. Lost sex drive 5 years ago. Had 2nd transplant in 2007 and kidney functioning wellI did cut my blood pressure dose in half. Didn't have an impact. Making the best of it. Good luck to you.
First and foremost please tell your husband he is not alone in his frustrations dealing with meds and doctors, and to please give it some more time to find a solution to the problem. - I write alot sorry.
You opened a can of worms I'm sure you didn't intend to. Going off meds is a huge red flag for not only doctors but also those of us in the transplant community. The best advice I ever had from a doctor soon after my transplant was basically this. Transplant docs have only one goal, make sure your transplant lasts for as long as possible, it's not that they don't care about the rest of the issues, they just don't have time or focus.
You need to see a primary care doctor who can invest more time and ask broader questions. Meds can cause diabetes, anemia, thyroid issues, depression, anxiety, and a host of other problems. And while going off the meds may have seemed to fix the problem; it may have only done so for a short timeframe. In fact, he may have another underlying problem that has nothing to do with the meds or transplant, but the meds may be making it worse. If the underlying problem is fixed, the problem with the meds should be resolved. I would ask the PCP to approach the differential with the assumption that your husband does not have a transplant. Then the PCP should be able to order some blood work and ask specific questions that may help with any underlying issues first.
If your husband feels the transplant team is not taking his concerns seriously you can request to see the social worker or request a review from another transplant team. Secondly, if you have a transplant pharmacist at the transplant center ask to meet with them to go over the meds. Your husband may need to be extremely direct with the doctors. Sometimes just saying, well the meds are making me tired isn't enough to make them pay attention. "I am losing my mind you need to re-evaluate my meds and we need to make changes. Tell me what needs to be done and who I need to talk to to make this happen."
I have switched transplant centers six times in 20 years because of moving. Some were great and willingly changed my meds when there were issues, others would stick to prescribing the same meds until the end of time. I am one of those rare people who take rapamune, Cellcept, and prednisone. Nothing else. Tac almost killed me because I have a high sensitivity to it. But it took me doing a PhD in a lab studying the effects of Rapamune on kidney transplant patients before I found a doctor willing to switch my meds. I even had one transplant nephrologist who told me they had never prescribed Rapamune and were very uncomfortable having me continue taking it even after being on it for a decade.
As most on this post have said transplant meds are a lot of art and a little science. We don't fully understand what they do to the entire body or the impact they have in combination with a variety of other drugs and underlying diseases. Transplant nephrologists are notorious for "if it anit broke don't fix it" mentality. It's a huge risk every time they make a change to your drug regime so you have to be diligent.
This October 15th will be my 25th Kidney Transplant Anniversary! I did not get here without an outspoken patient that is not afraid to tell my doctors' that something isn't right. With the help of my doctor my immunosuppressants dose was lowered and was able to stop taking Prednisone. It was not always easy, but LIFE is worth it! There is no way I would jeopardize my kidney transplant health.
My donor was a 16 year old boy, Ryan, that was killed in a car accident. His parents donated all of his organs. I have meet them a couple of years ago. They know that I am taking good care of Ryan's kidney. If I had lost a loved one and found out his/her organs were not being appreciated or taken care of...I would be real upset!
Make his doctor know what is going on! He sure can't help him if he isn't aware of his problems. Your husband could be leading the good life! I can't say often enough...GET TO THE DOCTOR & TELL HIM WHAT IS GOING ON NOW!!
Thank you, I will be reading these too him tonight. IM researching other doctors as well in our area. If I have more questions, I will reach out, he went to work this morning, knowing I was still pretty frustrated with him for not having told me sooner. I dont read minds and have asked when I see he is feeling off, but ego appears to get in the way, and he says e doesnt want to worry me. PFFTttt.
Just a thought...is he staying hydrated! It has been so HOT this summer that it has been hard to stay drinking enough water. If dehydrated even a little, it can make you feel BLAH, no energy and not wanting to do anything. I am having issues myself with that. When I am dehydrated my BP drops too, even making me feel faint. Maybe he should be monitoring his BP. Keep a list or his values for his next doctor visit.
If looking for a new doctor...go to Webmd.com When the site pops up, click on "find a doctor". In 2016 we moved from Milwaukee area in WI to Casper, WY. The scariest part was to find a great doctor that I could trust and would believe me. Found one thru this site. Can even see reviews from patients
Oh my...there's a lot to unpack here. I agree with everyone who says this is not a wise thing to do. The reason his energy and libido seemingly returns after he goes off his meds is that, of course, he has a functioning kidney that is clearing his toxins, etc. BUT, if he goes off meds regularly, that transplant will die. He will lose much more than his energy and libido when he's moved to dialysis. He will then face poorer health, time and activity restrictions, diet limitations, and perhaps acquire other life impacting things such as restless legs, machines and needles, skin rashes, a shorter life, and more. You, as a caregiver, will be be forced into a much more active role. I know because I watched my husband spiral into dialysis and finally receive a transplant. Dialysis is exhausting not only for those patients but also for us - the spouses. A transplant has transformed our lives in the most incredible ways.
In our journey, I've quickly learned to stay on top of things or risk derailment. I'm extremely watchful. I make appointments when I feel something is off, I take my husband to the emergency room when I see something serious, I go to EVERY appointment with him to keep myself and his doctor(s) informed and aware. I've noticed you have 1965 in your title. I assume it has something to do your personal history and that several decades have now gone by, perhaps for your husband too. If so, age may be a consideration. As someone mentioned above, perhaps it's testosterone. Or other glands or organs giving up. Or meds wearing on other organs, or conflicting with new meds, and so on. There are fixes for these things. That said, it's important to note that his transplant meds have worked fine for him otherwise - no diarrhea, no significant tremors, etc. And, best of all, they've kept his kidney safe. If your husband goes off the meds, the body will quickly detect and attack it (particularly when the residual meds in his blood wear off) and the results won't be pretty. Imagine the reaction you get to a splinter in your thumb. So, as one caregiver to another, I urge you to take steps to protect what you have. I'd make an appointment for him to get screened - for depression, for hormone replacement, for a "possible" reconfiguration of his transplant meds - whatever the testing and conversation dictates. You have a lot to lose and nothing to gain by letting him do what he's currently doing. You're are very, very lucky to have the life you have now. Pull out all stops to keep it.
Microfilinate mofetil. 500 mg one in the morning and one in the evening.
Carvedilol 25mg. Take one tablet in the morning and want in the evening
Tacrolimus 1mg. Take one tablet once a day.
I have also shared all your input with him, he agrees this has been going on too long and maybe we need to look for a new doctor. We are in the Sacramento area. Driving isnt an issue for us as I would rather drive to a good doctor and wait then what we have been going through.
He had me on his cell phone the last time he went in and tried to talk to his doctor. My opnion (and I realize Im protective) but IM also a social worker. Is they were dismissive and he would just have to live with it this way. Its the price you pay for the transplant.
Seems rather harsh to me, I agree we need to take care of this beautiful and amazing gift, but if you are feeling constantly run down and having bouts of rage and anger over the littlest things, this cant be all there is for him.
Sorry, me again. Darlenia is right, how he feels may have nothing to do with his transplant meds. Something else could be going on with him. That's why he needs to see his doctor!!!!
My husband says your husband is literally taking "nothing" compared to his own My husband takes 2 mgs of Envarsus (the time released version of Tacrolimus), Myfortic (4 tablets of Myfortic 360 mg) and Prednisone 5 mg. Then, he takes other meds for heart, cholesterol, blood pressure, etc. (My husband couldn't handle Carvedilol - made him extremely tired and woozy.)
I suspect something else is going with your spouse. I would strive for a top to bottom medical evaluation. Neither of our spouses will ever get their biological kidneys back - that is fact. The days of carefree health are gone. If your husband no longer recognizes that situation and no longer follows instructions, he has no choice but to go on dialysis or die. Please know that, as his care partner, you have power. You will be taken seriously - medical staff and EMS personnel deal with recalcitrant patients and will listen to you and will react accordingly. You can leapfrog over your spouse. My husband came close to passing away from transplant complications, arguing that he wouldn't let EMS in the house and more. After a home health nurse questioned why I hadn't alerted anyone, I was informed spouses are always be considered seriously; indeed, medical staff are trained to handle these types of situations. They recognize caregivers as having a clear mind and stable head. At this point, you'll need to watch your husband like a hawk or you (not just hubby) will wind up in a hellish state. (I trust your "papers" are in order.) We didn't ask for this when we married our guys, but here we are. Stay strong, very strong. Sending encouragement and hugs your way.
By the six-month mark post-transplant, I was down to just two meds being prescribed (plus baby aspirin). The two remaining are for rejection. My pills were phased out quickly without any noticeable effects. I would never even consider stopping the rejection meds unless I wanted to suffer like a madman.
So today I contacted my nephrologist. I am light headed and feel "off." Have been monitoring my BP and has been low 96/52. So, is this dehydration or are my BP meds too much for me now.
So, for you to take away from this....ALWAYS be in touch with your nephrologist or primary doctor when you have any issue. What if I let this low BP happen for weeks, or what if I was dehydrated for weeks? It could certainly effect my creatinine/kidney function.
Be a PEST and let dr know your problem. My nephrologist knows me (have been seeing him for over 8 years) and he knows that I am not making this up. Please, please protect his precious GIFT his transplant!!
I've read all these posts. Kaiti1965 thanks for asking this question. This is exactly why I joined about a year ago. I reread my response and may have appeared a little harsh. I'm 66 with 2 living donors who are 73 & 60 & both living. In 38th year of meds, tough but I'm living.
To all of you in this conversation I have the utmost respect. Thank-you!
He will lose his kidney if he stops his drugs. Go to another clinic tell them he is not being heard there are many drug alternatives. He should not feel this way!! This sight is a mental live saver for so many!!
I am 5 1/2 years post transplant. I feel great! What are his medications? Not taking meds is going to lead to the loss of that kidney and his life. Talk with the nephrologist… maybe his meds need to be adjusted. To be given a gift of a kidney and to take care of it is irresponsible. Perhaps he might be suffering from depression. Whatever is going on, I hope he gets help!
Just thought I would let you know what happened with me. We are all different and react differently to meds and our environment.
For the last couple of weeks I have been light-headed, dizzy, no energy, etc. Thought for sure I was dehydrated. My nephrologist ordered labs for today, and found that I am NOTs dehydrated. One of my BP meds, Cardura is the culprit. I have been taking it for over 20 years and now is causing problems. So, something like this could be happening to your husband, but it's easy for him to blame the immunosuppressants. There could be an interaction with some of his other medications. Only a doctor can figure it out!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Question about transplant time.
It's a mystery...
Post Transplant psoriatic arthritis treatment 
Edema post transplant
