Im so tired.....I try to fight the feeling of wanting to sleep the days away

Hi everyone, Well I had my transplant in feb 06 after nearly 3yrs on home capd. Last July I had my first biopsy was told nothing found carried on as normal then in Feb this yr that function was dropping gradually and so had to have a second biopsy to be told inflammation and some chronic rejection the team spent 3months trying to stop..slow it down new drug regime but was tolf in August just to accept there is sadly nothing they can do. Ive dropped from 54% last summer to 19% my last drop was 3% on 6wks im now part time in work and it feels like the remainder of my time my body just wants to sleep and not to feel refreshed afterwards im tired of feeling so tired.

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  • Have you looked at your blood results? Is your haemoglobin (Hb) level low? Are you on EPO? Sometimes, patients can be low on iron and this, combined with low Hb can cause tiredness. A boost of iron by infusion can make a big difference, if appropriate. Check with your consultant or specialist nurse.

  • Hi thanks Yes im borderline everytime they arrange for it so they have cancelled it twice now which frustrates me and my consultant as my in between results are on the lower side anf they won't allow drop in at the unit I have had one om 12 months and felt a real boost from it I was going weekly then but now they've said they cant do anything im 6wkly they also gave me booklet on epo and said prob by Jan so not too long now

  • I know how you feel I started rejecting my kidney last year and it is just keeping me off dialysis and I also go every 6 weeks. The tiredness is also and I am always cold as well but they are not considering EPO yet though I have had an iron infusion.

    Do they know why you started rejecting the kidney? Are you on a list for another transplant?

  • Hi im sorry to hear your losing your transplant as well. They said simply that on average they last ten yrs and that there have been periods where they have struggled to control my bp which is v erratic even with several bp meds and over timr it can damage kidney also my immune suppression levels had been quite low sometimes bit no real fact they said it would be easier for them to treat if thry could pin point its cause. I'll be back on the list when I drop to 15% and hopefully hold off need to go back on dialysis until 8% what about you whats your story/journey

  • I caught a virus and then started holding fluid and just did not feel well but they had changed my meds the same month I started rejecting though the claim this is not the reason just a coincidence! They tried plasma exchange and IVIG to stop the rejection but it just made me worse and I need up with my lungs filling with fluid, pulmory odaema, and the took 25kgsof fluid off me in one night. I have also had my kidney 10 years last Feb and it seems after two biopsies I am fighting the donors antigens which unfortunately means it is doubly hard to find a match this time around. They still do not know why but it seems to happen to quite a few of us.

    I also had runaway blood pressure and my diabetes became more brittle.

    I am on the list but am still holding off going on dialysis and so far so good!

    What are the different things that could have caused your rejection?

  • Its such a roller coaster for anyone! Glad to hear your holding off thr big D....I was 27 worked at the hospital and had simply felt unwell for a while thought the headaches and vomiting were pregnancy how wrong I was ended up with hypertension and an a & e visit telling me both kidneys had shrunk and failed prob over many yrs as lots of scars. ...but they cant give me a straight answer for deterioration of my transplant ive followed all the rules dont drink/smoke take meds when I should they just think the bp has and always will be an issue....its high when I sleep meds dont seem to bring it down for long then it creeps up abd they put me on another one lifes seems a bit unfair sometimes but I think most renal patients are strong and just keep fighting. Hope you stay well for as long as possible and get the gift of a new one soon x

  • Hi I am so sorry about what has happened. I am on a number of blood pressure pills as well as they could not keep it down, which often happens when the kidneys are not working well, and they eventually put me on Minoxidil which is one of the strongest and that did work. It does have a side effect that it makes you hairier as it is also used as a baldness cure for men! There is another one even stronger than this that they can use if nothing else works. Do ask them to look at your meds next time you go as high blood pressure is quite dangerous and effects all your organs. What are your readings at present?

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