Many of you who know me, follow me on twitter or read my blog will know I haven’t been keeping well lately. I’m sure you are all fed up of listening to me going on and on, I know I am. I hate it when people ask me how I am, I have to say not great, bla bla bla. I could lie and say I’m fine but I’m not one for lying. Not that I hate people asking, I just hate what I have to tell them. So for now, I’m not great. But it will get better.
People know I have kidney problems. What I have is something called glomerular thin basement membrane disease. Yes, it’s a complicated sounding disease but it’s not really. It’s basically holes in the filtering system where they leak blood and protein into my urine. This causes the kidneys to contract and gives me a lot of pain in my right side. I only ever get pain on my right side, but the disease is in both, strange but just one of these things. It seems to be how it is.
I lose blood and protein this way. I asked the doctors when I was first diagnosed if I could just drink some radiator weld you get for car radiators when they have a leak. They didn’t find this funny and told me, I would make myself very ill. Doctors don’t have a sense of humour. There isn’t anything they can do to stop it, just treat the symptoms.
I was diagnosed 9 years ago by a kidney biopsy when I started getting pain and blood and protein in my urine. I wasn’t very lucky with the biopsy and ended up flat on my back for 5 days with a blood clot in my kidneys until it passed.
For now, I experience what I can only describe as someone ramming a knife into my right side. Yes, it takes my breath away now and again and yes I wish it wasn’t there. But it is and I am not used to it, so I no longer take pain medication for it. It took a while but I got there. I came off all of my kidney tablets in 2005/06 when I wanted to try for a baby. I didn’t look back, especially at the pain meds.
My kidney’s function pretty well I am lucky, fingers crossed they will always function pretty well. They won’t work as well as kidney’s without the disease but they function well enough that I don’t need dialysis or any medical intervention. I am more susceptible to kidney infections and other infections, hence the colds and the bloody kidney infections I haven’t been able to shift recently. I am really lucky with these two as I haven’t had one for a long time but when I do get them, they seem to set in and don’t want to leave. These make me feel pretty weak and they pain gets very bad. But on the whole, I don’t get too many.
Just now I am losing a lot of blood and infections don’t seem to want to leave so the doctor is referring me to urology to have a look, who may refer me to renal instead. It’s a bit like being in a tug of war game that no one wants to win. The pain seems to be better and I feel better on the kidney front so that’s good.
When I was pregnant with both my boys, I was very lucky in that my kidney’s worked better when pregnant. I didn’t get too many infections and although I did have a few complications, I may have had them even with healthy kidney’s.
They are unsure why i have these problems, I may have been born with them, who knows. I pray every day that my boys don’t get it. The doctors do not know whether it is hereditary or not, but touch wood they are showing no symptoms.
So please forgive me when I have a little moan about my kidneys. I try not too, but sometimes the pain can get a bit arggg….. But on good days, you would never know. I live a normal life, long may it continue.
However, just now, my body seems to have some other issues. I went to the doctors with my kidney infections, she ran some tests and some other “issues” have appeared. I am anaemic, which in itself isn’t too bad, my iron levels are very low, so I am on high doses of iron for the next four months at least. This will explain my tiredness.
If only that was the only thing, I am also on antihistamine and cream to stop my hands and feet itching, especially at night. Driving me mad, worse than pain. She is not sure what is causing it, possibly all the antibiotics I’ve had recently or the liver reacting. So hopefully after a few weeks of these, it will calm down.
But that wasn’t all I was told. Apparently, my thyroid has been borderline for a while and has dropped below whatever level it is the measure it on. She is concerned about this but is hoping that it is just due to what has been going on in my body recently that is causing it. The doctor would like to wait the four months until I get my iron levels re-done to see if it’s come back up before medicating me for that. I agree, let’s see.
Now I sit and wait, with my pile of tablets, green leafy veggies and try to get on with life. Maybe I should just get pregnant again, it seemed to fix them temporarily before, on second thoughts lets get the other bits and pieces fixed before even thinking that one.
I’m sorry to have a wee moan, I just wanted to fill you in on what’s going on and why the doctors can’t fix my kidney problems. They can treat them but they can’t be fixed. I do know how lucky I am, there are many far worse off, I really do.
I’m feeling a little fed up of everything right now and wish it would all just go away. I am OK, just run down. I need to take things easier and need to stop taking so many things on. I know I need to rest more, it’s hard, but I have to if I want to get better and be a healthier mum to my gorgeous boys.
I have to say a big thank you to my wonderful hubby for looking after me when I’m having a bad day kidney wise. He is the best and for my boys who also try to help. I love you all.
Thank you for reading, I hope you don’t feel badly of me for having a wee moan. I will get there. Thank you for listening, it helps me a lot. Hugs x
This post is protected under copyright. SusankMann 2009 – 2014
Erica Hughes says
6th April 2018 at 7:52 amI know you’ve been living with this for years, but it’s good to read a bit more about it, so that I understand better. Let’s hope the bad days are few and far between.
Susan Mann says
6th April 2018 at 8:49 pmThank you so much for reading hon. It’s really just part of me now and unless I get infections like you know, they floor me. The rest of the time it’s manageable xx
Angela says
6th April 2018 at 12:53 pmYou are such a lovely kind lady and have given me so much support over the years, even more so since I got my diagnosis.
I hope that you can get the pain under control and you get some answers to your recent diagnosis
Much love xx
Susan Mann says
6th April 2018 at 8:51 pmOh hon, I am always here for you. Always. I am fine, unless I get an infection, it floors me, but otherwise it’s manageable xx
pinkoddy says
8th April 2018 at 8:51 amYou are so remarkable – I can’t believe I knew even knew! You certainly do get on with things and remain unbeat. Sorry to hear about all the pain you have under your smile xx