25 year old severe urological problems since birth. Current Stage 4 CKD.

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Hello. I am 25 years old and have suffered with Urological problems since birth.

Long story short, it’s affected my entire life. I am severely prone to getting Urinary Tract Infections and/or pyelonephritis (kidney infections), which always result in me being admitted to hospital as I have become resistant to many anti-biotics after being treated for these problems so many times in the past.

Things were apparantly very rough when I was a child (having septicaemia and being near fatal a couple of times) but to be honest I don’t remember much of that, I think I’ve managed to block it from my memory as a coping mechanism. What I do remember as a child was being bullied in school, as part of my condition I was unable to control my bladder, leading to wetting myself most days and with kids being kids, I got picked on for that. Things settled down for me in High School thankfully, I had less infections and incidents of incontinence.

However in July 2014 everything flared up again, I got a kidney infection which progressed onto me having septicaemia and pneumonia also. I was put on high dependency (not quite intensive care) and since then my life has been very difficult. I lost my dream career (I had managed to become a Police Officer) because of my health issues and it has all affected my relationship with both family and girlfriends as I have struggled to cope. My kidney function began to get worse and worse, and I had my left kidney removed in July 2015.

It was then deemed that to prevent any further damage to my remaining kidney, I needed major bladder reconstruction to manage the bladder pressures and stop reflux up to the kidney. I had this done in april 2017, and as a result I have to self catheterise to go to the toilet, as I am unable to empty my bladder on my own (was expected and agreed to when I had the surgery, as the reconstruction stops the bladder muscles co-ordinating properly.).

Between the kidney removal and bladder reconstruction I continued to have frequent UTIs / kidney infections and my remaining kidney took further damage. Since my bladder reconstruction I had a bit of time without any problems and everything was stable, however in the past month I had surgery for a kidney stone (first time I’ve ever had one) and then had an infection as a result of the operation (as I said earlier, very susceptible to infections when things are ‘played around’ with.).

My egfr is currently 20, it was 19 last week (the lowest it’s ever been) and my creatinine is currently 270. My urologist and nephrologist hope that these will improve slightly after having the kidney stone removed, however it is only hope. I see my specialists every couple of months to monitor my condition and in the long run, the plan is dialysis and/or a transplant, but no one seems to know how long that could be, as I can have periods of stability but just one infection or another kidney stone could bring my kidney function down enough to get to that point. 

I’ve never posted on anything like this before, but I am just feeling extremely down about it all at the moment and feel like it is all relentless. I’m not sure posting this will help me in anyway, but it’s worth a try I guess. If anyone has any advice, or has been / is going through something similar, then it would be nice to hear from you and to know I’m not the only one suffering. I also may be able to share advice from my own experiences. Thankyou for reading 😊

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  • Posted

    Hi Michael,

    I'm so sorry to read about your health challenges; you really have been through the mill.  I had to stop and think about what kind of advice I might be able to provide, as I have not experienced the range of complications you have suffered.  I have, however, been through kidney failure, dialysis and transplant, so perhaps I can offer this:  think of dialysis as a temporary state of affairs, something you can get through with the light at the end of the tunnel being a kidney transplant.  Yeah dialysis isn't much fun, but millions of us have been through it (yours truly included) and it's not that bad, just something to adapt to.  In fact, when you start dialysis you should feel a bit better because the dialysis will remove additional toxins from your body.  Moreover, you may be able to do dialysis at home which is more convenient, and either way it isn't so intrusive as to keep you from working a regular job.

    At this point, I suggest you see if you can find someone willing to donate a kidney (if possible) and also that you research the different types of dialysis.  If you have questions about the different modalities, post them here and people will respond.  If your kidney function decreases to the 12% range, you should qualify to start dialysis at that point.  Best to prepare yourself for it and know which modality you prefer (haemo or peritoneal).

    But most importantly, like I say, think of this as a temporary state of affairs.  I myself was scared s**tless prior to dialysis and it turned out not to be the boogey man I thought it was.  You can work through it and in the end, your future is transplant and hopefully to live as normal a life as you can.

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  • Posted

    Michael, I really feel for you as your childhood mirrors my own from birth with countless UTIs and hospital admissions.  However, I was very blessed as once my right kidney was removed at the age of nearly 13, my health turned around and my remaining kidney served me well for very many years until some 12 years ago when Ibuprofen and an inflammatory illness together with high blood pressure resulted in CKD.   Out of the blue, I started having continuous UTIs last year.  Luckily, a grey area showing on my bladder on ultrasound turned out to be a polyp when it was removed.  Antibiotics either don’t work and/or knock my kidney function for six but I have just had the longest stretch in the last 12 months without an infection, namely just over 3 months and this is since I took a spoonful of bicarbonate of soda in a glass of warm water when the last UTI arrived as suggested by a urologist along with an extra pot of tea a day.  Perhaps check if this is something you could try.  The important thing is to try and make the urine less acidic and more alkaline.  With regard to the kidney stone, I assume that your calcium levels have been checked to make sure that you aren’t making too much calcium.

    Hopefully, you are under a very knowledgeable renal team who are giving you the very best care and monitoring.  

    There are contributors to this site who have experienced both dialysis and transplants and I’m sure they will be along to answer any questions that may crop up in your mind on those issues.  If you don’t get many replies then you might want to look at the Healthunlocked kidney site for more support.  Also, if you ring the National Kidney Federation, there may be support groups they can put you in touch with.   Chin up and try and stay positive, Michael, and hopefully there will be better days ahead for you.

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  • Posted

    Maybe charl,

    First, I think you are incredibly strong! Thank you for sharing your story with us.

    My own experience with chronic kidney disease isn't similar to what you are experiencing so I'll leave it to others to share with you. I just wanted to assure you that you are definitely not alone.

    Please stay in touch!

    Marj

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  • Posted

    I consider you to be a brave soul.

    Having to go through what you went through as a child and. as an adult.

    I have not experienced many of the things. you have had. But if you can get a transplant that would be great.

    I on the other hand am unable to get a kidney transplant due to circulation problems. When I was in my 20's, I started to have leakage problems, it was called dribbling at the time. The cause was never found. At age 66, I still leak, but less now that I am on a stricted. liquid intake (4 cups of liquid --US standards ), started dialysis on February 21, 2014. But soon due to a circulation problem, lost part of my left leg below the knee and the toes on my right foot.

    I was told last year that since I have a circulation problem I cannot get a transplant.

    I am always thrilled when I hear someone can get one. I am not sad or mad. Life is too short to ponder why.

    Everyone goes through some kind of hell, health wise, once or twice or a lifetime of problems.

    Being a 47 xxy gay male, I have over 22 different medical problems that I have had to deal with, since my 20's. I am not hiv positive or have aids. That would have created more health issues for me.

    I don't get uti's, I get hematuria, which includes burning when I urinate.

    There are support groups that can help you if you have problems dealing with your situation.Reach out to them.

    This forum is very helpful when I found out it existed. There are many people on this website that can give great advice and couragement.

    I hope the best for you and don't give up hope.

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