Life after diagnosis

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I just wonder how other partners / patients have got on.

My wife was diagnosed with 4th Stage kidney failure just over 2 years or so ago and is now on peritoneal dialysis. She seems to be coping well but has lost a lot of weight (nothing new very common).

Two large side effects of her kidney failure is:-

1. Prolapsed womb most likely coupled to the weight loss and GP is aware I have nagged her once or twice to keep an eye on it and don't leave it. I don't think she needs anymore complications but I DO UNDERSTAND SHE DOESN'T WANT DOCTORS POKING AROUND ANYMORE THAN NEEDS BE EITHER!

2. Complete loss of libido! this isn't just my issue! She's well aware and was concerned enough a while ago for us to have a heart to heart. One nurse actually broached the subject sadly she's moved on before we could discuss it. Yes we do not now have sex and sometimes a quick peck is pushing it!

luckily we didn't build our relationship on sex originally and our bond is stronger than that. However she did suggest of meeting other people as long as she wasn't aware! It isn't the way I would like to go of course.

This side effect is a tough one and I think I need to go back and have a heart to heart with the GP and see what she says.

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7 Replies

  • Posted

    Great question. My first question if are you guys in process of kidney transplant evaluation? Have you thought about donating your kidney to her? Sexual libido normalizes after kidney transplantation. With regards to peritoneal dialysis and her low sexual desire, some times patients feel sexually desirable. Talk to her and assure her.
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    • Posted

      Dr Mashhadian

      I am surprised to read that you claim that the sexual libido normalizes after kidney transplantaion.   How can you generalize like this?

      I had my transplant several years ago, and not only did my libido never recover, but my physical orgasms become much weaker after the surgery as certain abdominal nerves were cut during the operation.

      As a male who previously had an active sex life, this naturally was something which I had to learn to live with, but what disappoints me the most with your posting is how you generalise on known problems.

      Naturally there are patients who's libido recovers once their body is free of the toxins and exhaustion, but there are equally, many others who do not.

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  • Posted

    As a doctor I'm surprised you had to ask, which is a little worrying!

    Kidney transplant certainly with my wife's hospital is pretty automatic at 20% function. we sort of discussed that and ruled it out really, Her best option was blood kin, my two lads were an obvious choice and we both said that wasn't an option they have their whole life ahead of them and we have discovered possible issues for them too.

    Youngest went for an Army interview and they found very slight traces of blood in his urine (Kidney thin membrane) he was deferred entry and underwent tests at the same hospital and was cleared (included biopsy). The specialist thought it could be thin membrane but it difficult to diagnose and picking it up by biopsy isn't easy as the angle has to be spot on when the biopsy is done. End shot was it didn't show (no surprises they weren't hopeful).

    Funny enough the eldest had a bit of a virus whilst at University and his GP surgery took a urine sample and found the same thing. This occurred before the youngest had his army medical. We mentioned this at the hospital and decided to see how the youngest got on before we looked at the eldest.

    The youngest has been cleared but they will monitor him annually.

    He also has two appointments as an after interest with a geneticist coming up to see if they have anything to say.

    I do wonder we were in North Wales on Anglesey for 10 years either side the Chernobyl accident and caesium levels were high and funny enough the eldest had a rare ear disorder too (cholesteatoma) yes, I know its like adding 2 + 2 and getting 5! but it makes you wonder. I know on Anglesey they were monitoring the population but we're not living they're any more so won't be part of the screening.

    Yeah, have done the later part of your answer but to no avail tiredness is a big issue of course.

    I'm patient.

    It's not the be all end all.

    But is a little fustrating.

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  • Posted

    thank you for the answer. You are a great husband. Good social support is very important for receiving a transplant.

    Kidney disease can cause physical and emotional changes that may affect your sex life. The chemical changes that occur in your body with kidney disease affect hormones, circulation, nerve function and energy level. These changes usually lower sexual interest and/or sexual ability. Physical changes may cause people with kidney disease to feel less attractive sexually. Many of the medicines used to treat high blood pressure may affect sexual functioning.

    Use of steroids may cause weight gain, acne, and unwanted hair growth or loss. Surgical scars can cause patients to feel unattractive. Medical changes and changes in self-image may affect sexual interest and functioning.

    Medicines should be reviewed for sexual side effects and changed if possible. Blood tests should include hormone levels and blood sugar levels to check for diabetes. If no physical problem is found, an emotional cause must be considered.

    How old is she and what was the cause of her kidney failure? Thin basement membrane disease?

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  • Posted

    Hello, I have Ckd 5, I cannot have a transplant due to co-morbidity, I am searching for alternative treatment

    to dialysis, as I am 71, and not in good health. I have found these solutions, but cannot find others who have tried them or know much about their results.

    1. Micro-Chinese Medicine Osmotherapy for Chronic Kidney Failure

    2.Atharva Method Ayurveda Treatment For Chronic kidney disease

    3. autologous mesenchymal stem cell transplant intraarterially.

    Any views or knowledge on any of the above.

    Need help soonest.

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  • Posted

    Hi,

    I am CKD stage 5 and have just started the same dialysis as your wife and its a lot to come to terms with having a pipe sticking out of your stomach to keep you alive sexy its not.  You sound like a really nice man who is willing to support your wife (my husband is like you he is kind and just wants to look after me) she more than likely feels uck in general, its still tiring while on dialysis.  I get rudely awoken at 5.30am each morning with drain pain I would rather give birth its horrible.  I am sure it will get better!.  When I first had my line fitted my husband didn't want to hug me round the waste like he used to as he was scared he would pull the thing out so I had to endure a headlock like hug until he realised that it was safe under a dressing and was really difficult to pull it out.  Once this was realised everything else went back to how it was.  I understand that this is the other way round in your situation my advice is give her time I am sure she loves you very much and really appriciates your support she is going through a horrific time at the moment the dialysis is only the start the really scary bit is the transplant bit please tell her she can pm me if she wants or you if you need to keep doing what you are doing I know us wives sometomes moan about our other halves but I wouldn't swap mine for the world and like you our relationship wasn;t just based on sex and we have been through our fair share of crap and still love each other so keep fighting for her

    take care

    xx

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  • Posted

    So sorry to hear about your wife's problems. Before all problems are blamed on the kidney failure, have a good look at the possible side effects of any drugs she may be taking for high blood pressure etc. Some of these drugs have the most awful side effects on some people.

    For a year I have blamed my kidney failure/ dialysis for feeling ill in a variety of ways. Eventually, out of desperation, I experimented (with the support of my doctor)by stopping first one, then another tablet that had been prescribed for high blood pressure and angina. Within a week I felt well again!

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