Had my transplant in November 2011 si... - Kidney Transplant...
Had my transplant in November 2011 since then I has terrible headaches and I am constantly tired. Has anyone else had these symptoms?
Yes, I had a lot of headaches after my transplant and am still (nearly 25 years on) very prone to them. Fatigue comes and goes but is often linked to heamoglobin levels - are you anaemic?
Keep nagging your doctors. They should be taking this seriously - it's no good giving you a transplant if your quality of life isn't satisfactory. They may need to adjust your meds or give you IV iron or EPO. I find doctors can be dismissive of common symptoms like this as they're hard to pin down, but they need to try to find a solution.
My heamoglobin levels and iron are ok, I am seeing a specialist in December. Doctors have been very good about it and send me for Ct scans etc., really can't complain about the treatment I am getting. This is not my first Transplant, I have been attending the Unit since 1983, so the doctors know me very well. Just wondered if anyone else had these symptoms. I am on a study and been changed from Prograph to Sirolimus but it has not made any difference. My bloodpressure tablets have also been adjusted. Headaches persist and all I do is sleep
Tiredness could def be a lack of iron/ anaemia so you should check it out - you may need an iron boost or EPO injections. Headaches - could be blood pressure tablets that are not correct
Thanks for answering, all this has been checked, seeing a specialist in December. Just wondered if anyone else feels like this. I take Sirolimous and Microphenilic Acid
I had these symptoms for a while after my transplant, it wasnt until my vision went blurry that it was discovered that i had Benign Intercranial Hypertention due to a reaction to Neoral. I ended up having lots of lumbar punctures to relieve pressure created by too much fluid in my head. i now have a lumbar shunt and no longer take neoral......... This probably isnt you but always tell your consultant things that make you unwell because you never know what it could be.
Thanks for your answer, hope you are keeping OK.
Suffer from M.S. Class Mysef As Med. Seen Many Cases much Worse
Sorry, don't want to be ignorant, but don't really understand what you mean
Have M.S. Have had For 11-12 1st Year Felt O.K.. Then Had 2 Finish Job Finish Playing Golf As M.S Affects Eyesight Balace Both Required For Work and Play. Feel That Given The Level of M.S. That. Kidney Transplant Would Be O.K.
First had renal failure (polycystic kidneys) in 1979 at age 16, on heamo dialysis until 1983 had first Transplant, did not work however, they did not have the same drugs in those days. Went back on heamo dialysis until 1985 when I got my second transplant which worked until 1987 then unfortunately rejected. Continued on CAPD until 1989 when I received my third Transplant. This transplant I had for 21 years and never really had a days illness. Throughout all this time I was in fulltime employment. Due to the steroids I suffer from osteoporosis and osteoarthrits, I also have diverticular desease, depression, vascular desease and have now got an aneurism over my left ear. This is not causing my headaches. I had to give up work, because I am in a lot of pain and my concentration is zero ( I was a driving Instructor). I went back on heamo dialysis in January 2011 because my body could not cope with CAPD any more, as I have had a lot of operations.I was very fortunate to receive a fourth Transplant in November 2011. I feel I have been truly blessed to have received so much help from strangers, And I am very grateful for all everyone has done for me. My kidney is working well, only since the 8th of November 2011 I have had a bad headache every day. I have to see a specialist in December, I have been sent for scans by my renel physician so far they can't see any cause for the headaches. I just wondered, if any other Transplant recipients had any such symptoms.
I am very sorry to hear you had a bad time with MS. It is truly a terrible illness and there is not much anyone can do for you. I can understand the way you feel. I hope you will keep OK. All we can do is my the best out of the life we were given.
Hi. I had my transplant in March 2011 and have suffered headaches and fatigue that sound similar to yours.
The headache is constantly there in the background and frequently flares up to a crippling pain behind my eyes and blurred vision. Also the tiredness which is there constantly and sweeps over me in waves. To the point where I just can't think straight or function properly. Just sleep.
I have also developed pain and weakeness in my legs since transplant. Osteo arthritis has been diagnosed, but I had no symptoms prior to transplant and the pain started whilst I was still in hospital and has gotten progresively worse and more widespread since.
My bloods are all good, my kidney working well. My blood pressure controlled.
I am on Prograf and Mycofenolate Mofetil and Moxonidine. I take Propanolol for the headaches, which has considerably decreased the frequency of the flare ups.
I do not feel that my medical team have been hugely supportive. The best shot they could come up with was to send me or counselling, which has just left me feeling depressed and inadequate. My quality of life now is worse than it was when I was on dialysis and all I hear from my team is how well my kidney is doing.
Sorry this isn't a heartening reply. You are lucky to have a good team who take your symptoms seriously. I hope they find the cause of your condition soon.
Sorry to hear you are suffering similar symptoms. I take Mycophenolic acid now reduced from 540 to 360mg I used to take Prograf but was changed to Sirolimus 4mg, cause I am taking part in the trial.I also take 5 mg Prednisolone. My kidney function is also very good, though the headaches persist. I used to take paracetamol, Tramadol was added but did not make any difference, back to paracetamol. Now all my painkillers have been withdrawn for a period of 2 weeks to make sure it is not analgesic headaches. I must say, my doctors have been very supportive. First I was sent for for a Ct scan. Another scan followed in the neurology department with dye added, an aneurysm was found but does not explain the headaches at the top of my head. It is not affecting my sight. Now I have been referred to a specialist, my appointment is not until December. Like you I am always tired, my concentration is Zero. I am already taking antidepressants so I don,t think I am any more depressed than normal.
I hope your Doctors are taking you more serious soon. All I can say is keep complaining. I don't understand their attitude to you problem. Whenever I had any problems at all, everyone has been so supportive. I had my Transplant at the Western Infirmary in Glasgow.
I will let you know once I have seen the Specialist, until then all the best and I hope you feel better soon.
Found out why IAm constantly tired. My body wasn't producing enough adrenalin. I am now taken hydcotison, 20mg in the morning and 10 mg at lunchtime. Feeling a lot better now. Still having headaches.
Really glad to hear they got to the bottom of it and you're feeling less tired. Hope they can sort the headaches next.
My doc has sometimes wondered about doing the test for adrenal insufficiency. However I started epo a few weeks ago and feel tons better, so guess I was just anaemic.
Thanks for the speedy response.I take 4mg of prograf twice a day. I believe this is a high dose, Headache is certainly one of the side effects of tacro. My nephrologist will not even consider changing my meds. I tried the usual painkillers (and ew unusual ones) for the pain with little effect. The propanolol seems the most effective, with the least symptoms. It also leaves me free to take whatever painkillers I need to manage the rest of my body. I try to keep my meds to a minimum... just in case. So no antidepressents or me. Although the pain makes me cry a lot, and it was that crying that led my GP to believe I was depressed. I have had no scans or referals for the headaches. The tiredness is just shrugged at. Nothing shows in my blood tests so all are happy except me. I will be interested to know your outcome. I hope things all go well or you, and you soon feel better.
Thanks for answering, I am very surprised at hearing they won't consider changing meds. My physicians have offered, they already cut Mycrofenolic acid, but I preferred to stay on Sirolimus instead of Prograf because my creatinine is much better with this. Maybe there are other reasons (antibodies etc) why they won't change them. Is this your first Transplant? It is usually best to listen to your Physicians they know best.
I didn't realise I was depressed either. I was always crying as well. Since I am on Fluoxetine I feel lots better. But I don't think headaches are the cause of depression. Keep on at them.
This is my second transplant, although the first never had blood flow through it due to a clot. It was only in 72 hours, so doubt if there is an antibody issue. I have problems with steroids, so they were never a long term option, and my renal consultant will just not consider any of the other options. I even offered to trial any new drugs. He just keeps saying how well my present combination works. Guess we just have to accept that not all healthcare is created equally. That certainly appeared the case when I dialysed in other regions, or we had holiday users.As for the depression. Sometimes depression is a natural reaction to a bad situation, but the tears are definately a reaction to the pain I am in and my doctors response to it. Also extreme tiredness can make me weepy.
Thank you for listening to my complaints. I'll let you know if I make any progress.
Thank you for getting back so quick, I am on my fourth transplant myself. The physician I usually see has known me since 1983, really everyone knows me very well. I am not usually one to complain, so when I do they know that there is something not right. I also have polycystic kidney disease and my mother and auntie died of a hemorrhage, so I was scanned right away. Could you not ask your physician to be referred to a specialist? To me headaches are the worst pains out. Just keep going on at them. All the best
