Not to be taken lightly
This article is by SP Foundation Board Member Jackie Wellman
Just last week I had the second person in my family die from urinary tract infections caused by having HSP and it went systemic. Yes, die from a urinary tract infection that went systemic.
The first was in 2000 and it was my Grandma. She died from a chronic urinary tract infection that went systemic. Last week my 63 year old Uncle John was the second.
This article is to warn you that urinary tract infections are nothing to mess around with.
If you have bladder issues with your HSP or PLS, like urgency, then chances are you have to go all the time because you are not emptying. Our bladders just do not work right; therefore they do not empty completely. Even though you may feel like it is. If you have to urinate within the next hour it is because there is too much in there….because it did not empty completely.
Think of a pond that does not get drained…it gets gross. Unpleasant things start growing in it. Same thing with the bladder…not green algae, but nasty bacteria. Those bacteria can become resistant to antibiotics and then you are in trouble.
I used to get UTIs frequently. The doctor talked me into trying to self-cath morning and night. I have not had an infection since. That was about ten years ago. I now get bladder Botox and self-cath about six times a day. Every day. Yes, I would much rather not do it but the alternative is to die…at least in my family. The bladder Botox is painless also. I feel normal for 6-9 months. It’s worth it in every way to me. Before doing Botox I was visiting the bathroom every fifteen minutes.
I urge you, if you are debating about whether or not to start self-cathing, to bite the bullet and do it. It is painless and easy. Not the most convenient thing but better than the alternative.
There isn’t much on the internet about HSP and UTI’s. I was diagnosed with HSP when I was 16, then I’ve been told different things by different doctors. My albumin levels in my urine were through the roof, and I suffered terrible back pain and swelling in my ankles and face, especially in the morning.
I saw a few nephrologists, and was told that I had glomerulonephritis, or IgA nephropathy (don’t have an idea if there’s a difference) but was also told that I’m borderline nephrotic by a paediatric nephrologist.
Since then, I had been advised to have a flu jab, which my GP refuses to give me, and to keep my diet clean. Blood and protein is always present in my urine, but because they went down considerably to what they were before, I was discharged.
Since then, I have recurrent UTI’s every other month, and I get severe pains in my sides and lower abdomen that have me crawled up in pain and unable to move. I feel helpless because doctors won’t do anything other than prescribe me the same antibiotics. Nothing seems to be getting fixed long term.
I’m left wondering whether anybody else feels the same.