Kidney failure and transplant

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After being on dialysis for 4 and half years am beginning to give up, so have turned up here looking for some inspiration and support. 

At the age of age now, having a normal life and dream of having kids of my own seems far from really happening, heck! am not sure if i will have a transplant in the first place.

I have been deactivated from the transplant waiting list for 2 years and it only took them 1 hour and 2 minute phone call to tell me that this is how its going to go, and after 2 years of sorting out things I am being told that it`s going to take 3 months furthur just to activate me on the list......Don`t know if this is the normal procedure for everyone?

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8 Replies

  • Posted

    Sending you prayers and hugs, my husband and I are new to this CKD in his life.

    I can only imagine your stress going through all this, I don't know much about dialysis other then a brief class on CKD in general.

    I am here to support you my dear, sounds like you are young, this must be so difficult for you

    Feel free to write anytime, I am fairly new to this forum but the support is loving and fabulous

    Big hugs and positive thoughts❤️

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    • Posted

      Thank you so very much. Sorry, that you are also going through this situation. You are right, sometimes all we need is to keep moving forward and look for the positive things. 

      If you have any questions or concerns then I am here for you, feel free to write anytime. 

      lots of love and prayers

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  • Posted

    May i ask what country you live in  ? 

    Sometimes i feel like giving up to but there are many people that may be worse than yourself.  Its just a case of keeping things together and hoping that the time will come when you may have a normal (ish) life.  Good luck and let me know what country you are from thanks

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    • Posted

      Thank you for your support. 

      You are right there are people in worse condition than we are but then again when you yourself are in pain sometimes giving up seems to the best option, at the end of the day we are all human beings. 

      I am living in London. 

      Prayers for you.

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    • Posted

      Hi,

      How come you were put on the list and then taken off again, they only usually take you of if you have cancer or a heart attack so you can recover.  I am in UK and I have been active on the list for a year (but I have never been removed).  What type of dialysis do you do? If you do haemo it can feel like you are not having a normal life as you spend so much time in the hospital.  It will help to know what you do.  I do PD and so I know hoe sometime you can think for gods sake I can't wait to have to not do this anymore, but it is better in my opinion and gives more freedom than haemo.  Please don't give up hope you can carry on, look how far you have come do you think a "normal" person could cope with what you do each day, no they can't you are a super hero!.  My friend is being tested to be a live doner but I still have to be on the list.  I had my first call the other day after nearly a year (I am the most popular blood group that everyone wants so I am told a year is really quick) so off we go to the hospital and I tell my family stay at my house, they didn't they all ignored me and appeared at the hospital much to the amuzment of the nurses luckily.  However on this occasion it wasn't meant to be and I went home still having to do dialysis.  I am quite an upbeat possitive person and even I have days when I can't be bothered with it all.  When I feel like this I have a word with myself and say it could be worse I could of been told I have cancer that cannot be cured and at least we can have treatment dialysis only became widely available 60 or so years ago I no it doesn't always feel like it but we are lucky.  Please don't feel alone there are lots of us about.  You have to belive that there is a kidney for you there is just a really good one that you have to wait for and it will be perfect for you.  You will have a family and normal life x

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    • Posted

      Hi Helen,

      Thanks for all the support. I was on PD for 3 years but like you know the linning of the stomach gets damaged and PD stops working, thats what happened. I kept on telling the doctors that i get breathless and cannot get up from bed but they ignored me until one day while on dialysis i stopped breathing, had to call an ambulance and there was over 13 litres of extra fluid that made my heart enlarged and fluid around lungs. Had to have a procedure for line in my groin and dialyse.

      Thats how i switched to haemo. I had to do PD everyday for 9 hours because docs said am young and to keep up with routine etc.

      Then the line for haemo, the procedure had to been done twice at same place... Ouccch! Had my line kinked because line was too long for me and had to undergo the procedure again after 6 months and came out of surgery with a lot of holes.

      So yes, at times things do seem too much and i think about giving up.

      I was taken off because the docs were unable to control my blood pressure and after that because i had to apply for further leave to remain so it took the home office 1 year and 6 months to send me my documents back and now that I have donors who have been waiting for 2 years I am being told that it will take minimum of 3 months to start the process of just getting activated and contacting the donor. Doesnt seem fair to me but then maybe im wrong.

      Lots of love and prayers and hope you get that kidney soon

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    • Posted

      Hi,

      I am sorry to here that about your PD, you should of beeen able to do this for more than 3 years.  It doesn't sound like you have been very well managed if your team allowed 13 litres of fluid build up that is dangerous.  I have to write my weight and BP in a record book every morning when I wake up before Ido anything else.  I have been told what the figures should be and by how much they can deviate and if they go over or under what they should be I have to phone my PD nurses and I have to go to the unit so they can check me.  They also phone me once a week to check on me and I have a dietician and neph who watch my bloods like hawks.  So I guess I am lucky to have such great care from the NHS.  Everything takes such a long time you are wright.  I don't think it takes 3 months to be activated so I may question that if I were you.  It doesnt ring true about them having to contact live doners the hospital don't do that in the first instance the doner has to make contact with the hospital usually in writing to state their inetion of what they want to do for you, then they hospital contact the doner otherwise they would be in breach of the human tissue laws.  It doesn't usually take long to get the first bloods in but live doner work up takes a minum of 18 months me and my friend are nearly two years into it so far I don't mind as I have to make sure my friend will be safe I would never do anything to harm her so they can test and make aure as much as they like..  Also I am young and never got told I had to do PD for 9 hours but we all transpond in different ways, yours sounds like you weren't driaining fully hence the build up this could of be dealt with your tube could of been stuck, you could of had fibrin blocking it anthing like that, that is such a shame for you.  Don't give up though these things take time as there are kidneys for us that are just right for us somewher we just have to be a bit patient.  I will be here if you need to vent I know all to well the frustration you feel at times.  Take care my friend

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  • Posted

    Have you looked into paired exchange or Craigslist? Paired exchange is when you know someone that is willing to donate but they aren't a match for you. They can donate to a stranger and a stranger can donate to you. That is how I am getting my kidney. My cousin is a 95% match but they found my perfect match so her kidney is going to a stranger. It's a circle with 3 donors and 3 recepients.
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