From a relative's perspective
Posted: Sun Aug 30, 2015 10:06 am
Hi all,
I'm Steph and I'm 21. My Mum has FSGS, which has contributed to two incidences of kidney failure. The first was about 5 years ago, which resulted in my Dad donating one of his kidneys. It was tough for all of us, although I suppose I didn't really understand what was going on, but the second time around has been a lot worse. My Mum's immune system started attacking the transplanted kidney and it began to lose function last summer. It's now down to about 6%, so she started dialysis for the first time last week. It's been tricky because we aren't the closest family in the world. My Dad works 7 days a week, even though he doesn't need to as he's no longer supporting me through university, probably because that's what he's used to doing. He doesn't cope very well with emotions so I think he's trying to breeze through the situation even though Mum's health is quite bad. I've recently moved two hours away to start a job, and before that I was an hour away at uni. I'm going to visit as often as I can as I now have weekends free where before I'd be studying. This coincides with Mum's off-days for dialysis which is pretty handy.
They won't put Mum on the transplant list yet because she has a stomach problem. They've tested for cancer and it's all fine but it looks like some kind of allergy-induced IBS, possibly triggered by the toxicity of the medicines. We're waiting on a second colonoscopy, the appointment for which is scheduled for January(!), so it looks like it will be a long time before she can even get on the list. I've been thinking a lot about donating as it would, I imagine, be a much quicker process than going on the list, assuming I was suitable. My Dad especially isn't keen because I'd have to take a lot of time out from my new job and because I'm so young. There's also a chance that I could inherit the disease. I've had Reynauld's Phenomenon since I was about 17, which is a circulatory issue that causes numbness and lack of blood in my extremities during temperature changes or due to fear. It can be a stand-alone issue or linked with immuno-deficiency problems, and can be associated (I believe) with FSGS. I had a general blood test to investigate tiredness a couple of years ago and everything came back fine, but my Mum is keen for me to go to my GP and explain my background so that if I do end up with any problems then they can catch them earlier. The doctors have said that my Mum's FSGS was exaggerated by her pregnancy with me, so if I did and could donate and/or ended up getting the illness then I guess I could really be up shit's creek when it came to having kids.
I'm trying very very hard to be there for my Mum and not get frustrated or be selfish, but it's difficult watching her decline so quickly when only ten years ago she would march down to school to collect me and would help me with my homework. Her Dad died earlier this year and I can't help but make comparisons between their general health. It's hard being okay with offering to pick up groceries or weed the garden or bring the washing basket downstairs because she doesn't have the energy anymore. She hasn't worked in a long time and doesn't visit her friends very often or have any hobbies, so I'm also concerned about leaving her on her own for too long as I worry she'll get lonely. She manages okay with reading a magazine and I've been trying to encourage her to get back into reading books as she used to love them at my age, but it always gets brushed off.
It's quite a wall of text and a whole host of thorny issues, but can anyone offer any advice? Maybe anything encouraging about dialysis as I think she's quite scared about it. Her first session didn't go well at all and her second was still pretty painful. I have a day off next Monday so I'm planning on accompanying her to the clinic - are relatives usually allowed to do that? We aren't sure. Also, have any children donated kidneys to their parents? What was it like? After visiting my parents in hospital the first time I've developed quite an aversion to medical buildings in general, so it would be a very big deal for me to even put a toe into the renal ward again.
Steph
I'm Steph and I'm 21. My Mum has FSGS, which has contributed to two incidences of kidney failure. The first was about 5 years ago, which resulted in my Dad donating one of his kidneys. It was tough for all of us, although I suppose I didn't really understand what was going on, but the second time around has been a lot worse. My Mum's immune system started attacking the transplanted kidney and it began to lose function last summer. It's now down to about 6%, so she started dialysis for the first time last week. It's been tricky because we aren't the closest family in the world. My Dad works 7 days a week, even though he doesn't need to as he's no longer supporting me through university, probably because that's what he's used to doing. He doesn't cope very well with emotions so I think he's trying to breeze through the situation even though Mum's health is quite bad. I've recently moved two hours away to start a job, and before that I was an hour away at uni. I'm going to visit as often as I can as I now have weekends free where before I'd be studying. This coincides with Mum's off-days for dialysis which is pretty handy.
They won't put Mum on the transplant list yet because she has a stomach problem. They've tested for cancer and it's all fine but it looks like some kind of allergy-induced IBS, possibly triggered by the toxicity of the medicines. We're waiting on a second colonoscopy, the appointment for which is scheduled for January(!), so it looks like it will be a long time before she can even get on the list. I've been thinking a lot about donating as it would, I imagine, be a much quicker process than going on the list, assuming I was suitable. My Dad especially isn't keen because I'd have to take a lot of time out from my new job and because I'm so young. There's also a chance that I could inherit the disease. I've had Reynauld's Phenomenon since I was about 17, which is a circulatory issue that causes numbness and lack of blood in my extremities during temperature changes or due to fear. It can be a stand-alone issue or linked with immuno-deficiency problems, and can be associated (I believe) with FSGS. I had a general blood test to investigate tiredness a couple of years ago and everything came back fine, but my Mum is keen for me to go to my GP and explain my background so that if I do end up with any problems then they can catch them earlier. The doctors have said that my Mum's FSGS was exaggerated by her pregnancy with me, so if I did and could donate and/or ended up getting the illness then I guess I could really be up shit's creek when it came to having kids.
I'm trying very very hard to be there for my Mum and not get frustrated or be selfish, but it's difficult watching her decline so quickly when only ten years ago she would march down to school to collect me and would help me with my homework. Her Dad died earlier this year and I can't help but make comparisons between their general health. It's hard being okay with offering to pick up groceries or weed the garden or bring the washing basket downstairs because she doesn't have the energy anymore. She hasn't worked in a long time and doesn't visit her friends very often or have any hobbies, so I'm also concerned about leaving her on her own for too long as I worry she'll get lonely. She manages okay with reading a magazine and I've been trying to encourage her to get back into reading books as she used to love them at my age, but it always gets brushed off.
It's quite a wall of text and a whole host of thorny issues, but can anyone offer any advice? Maybe anything encouraging about dialysis as I think she's quite scared about it. Her first session didn't go well at all and her second was still pretty painful. I have a day off next Monday so I'm planning on accompanying her to the clinic - are relatives usually allowed to do that? We aren't sure. Also, have any children donated kidneys to their parents? What was it like? After visiting my parents in hospital the first time I've developed quite an aversion to medical buildings in general, so it would be a very big deal for me to even put a toe into the renal ward again.
Steph