From a relative's perspective

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From a relative's perspective

Postby StephN » 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
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Re: From a relative's perspective

Postby Grey » Sun Aug 30, 2015 11:46 am

Hi Steph, you are very young and it's a lot for you to cope with, but the good news is YOU CAN AND MUST ! cope. As you can see from my posts on here I am an old guy, 65 and had a successful transplant recently so have loads of experience in this topic, especially dealing with adversity. What nobody knows is that I had very traumatic event in my life when I was 16, but coped with it, just as you must cope with your moms journey, wherever it goes. I will send you a PM to say what that event was so you get an insight into where am coming from. Having been through the whole journey from a suffers point of view, nothing matters more than mental attitude and close friend or family support.

On the mental attitude point, both you and your mom need to realise that what is going to happen will happen, no matter what thoughts you have about it. So feeling down and depressed and feeling sorry for yourself only aggravates the situation and makes it so much harder to deal with. Accepting things and developing a strong positive attitude makes it so much easier to cope and is the answer.

Now on the matter of close family and friend support, nothing helps a patient more that getting that. problem is, from experience, for healthy people to keep the correct perspective is very difficult. In the beginning it is easy, but after a year or two or three it becomes so much harder. The reason is that the patient always looks fairly normal, sometimes even quite healthy, but in reality they are slowly dying. I had even close family friends saying I was lazy and negative because I could not do what they thought I should be doing, and that brings you right down and almost impossible to cope with. So a good positive compassionate line of support always helps.

My dear wife donated a kidney on my behalf. She wanted to donate to me but we did not match so we entered what is called "the paired exchange scheme" She gave a kidney to someone within the scheme who needed her match and someone else in the scheme who matched me gave me a kidney. The important thing here is I saw first hand both the effects of a recipient and also the effect on a donor. My wife was out of hospital and home after 3 days and to be fair then took a few weeks to recover fully. Assuming there are no unexpected problems, donating is very easy. For someone as young as you are it should be a breeze. Assuming you are fit and healthy and having a built in donor makes it so much better as there are no long waits on dialysis.

Regarding your dad, am not sure what to say, would be inclined not to blame him too much, after all he is a bloke and fairly set in his ways, so the best you can do is subtly help him realise what mom is going through and get him to change over time to support her. You may succeed but if not don't let it become a stumbling block in your families life. The last thing you need is allowing a thing like that causing a family rift and possible breakup on top of coping with the trauma of kidney failure.

By the way, if you put yourself up as a donor they will test you thoroughly so as to identify any possible stumbling blocks, they try as much ass possible to ensure the donor is in good health so that they won't have problems latter in life. Good luck.
Last edited by Grey on Sun Aug 30, 2015 2:07 pm, edited 6 times in total.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
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Re: From a relative's perspective

Postby chrisb » Sun Aug 30, 2015 2:03 pm

I am not sure if it's still on the iplayer but BBC did a programe following one our regional newsreaders donation g a kidney to his mother. It was quite detailed and was very I teressti g to watch. It's called Transplants and Trafficking
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Re: From a relative's perspective

Postby wagolynn » Sun Aug 30, 2015 2:17 pm

Hi StephN,
Sorry to read about mums problems.

I go along with what Gray has said above, your desire to help is very commendable but do try to not overwhelm mum, and dad. It is a difficult but not impossible task, to be their when needed, and not get in the way.

Mum will look very ill at the moment until she adjusts to dialysis (this can take two or three months) but she should improve as they work out how much dialysis she needs.

You can go to the Haemodialysis unit as a visitor, but I would suggest, only if mum wants you to (I am assuming mum is on Haemodialysis (HD)).
It would be helpful if you or dad could go with mum to see the consultants, so you both understand mums health, again, only if that is what mum wants.

Apart from mum being physically weak, she will also be depressed, hence the need to not push her but to support her, as I said above, this will improve as she adjust to dialysis.

As to thoughts about offering a kidney -
First, sorting this out is not urgent (mum is not able to receive a transplant at the moment), so it is perhaps better on the back burner. Secondly, at the appropriate time ask mum what she thinks. You are very young, no one knows what is waiting for you around the corner. If you were my son, I would be proud of you for offering but I would say no, (I did to my son) because of this unknown thing.

Best wishes to mum, dad and you.
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Re: From a relative's perspective

Postby Grey » Mon Aug 31, 2015 10:10 am

Some good additional thoughts added !
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
Grey
 
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: From a relative's perspective

Postby wagolynn » Mon Aug 31, 2015 2:50 pm

Hi StephN,
Just one last thought, your job - whatever you do, don't put your job in jeopardy. If you were to lose it due to taking time off, mum would be devastated, and she will blame herself.

Best wishes.
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Re: From a relative's perspective

Postby StephN » Sat Sep 05, 2015 11:01 am

Thanks everyone for the replies, it helps to talk about it. I'm hoping that Mum will get used to dialysis soon as so far she's not really feeling any better at all, which is making her crabby and causing some tension. On the plus side she's met a couple of people on the unit who are considerably older and crabbier than she is, so I think that makes her laugh a bit.

@chrisb, I think I saw the one you mean - worked for the BBC or something similar? His experience seemed a lot less tumultuous, in my opinion, than my Dad's experience, but maybe because he's younger and because I'm remembering my Dad's experience to be worse than it was.

I offered to go along with Mum for HD and the unit were okay with it as long as it was a one-off, but Mum changed her mind as the day we discussed is my birthday so I don't think she thought it was very fair.

@wagolynn - regarding my job I'm also concerned about that. I'm on a two-year graduate scheme in sales and accountancy where they definitely don't pay you to sit around all day, so it wouldn't surprise me if they tried to stream me onto something else if I had complications and needed too much time off. We'll see, I suppose. I don't even start the job until next week so I certainly haven't discussed anything to do with kidneys with them.
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Re: From a relative's perspective

Postby Tricia288 » Sat May 21, 2016 10:24 am

I understand where Steph is coming from. Husband been on PD at home, now has to go on HD, 71 . I have needle phobias, he doesn't like it but hospital are pressurising us to carry out HD at home. It us dangerous in hand of Kay people. There are legal implications too. If someone has heart attach at home on HD the police check that the carer didn't do it maliciously, premeditated if made mistake and can prosecute. This part is not told to you by hospitals. It us true. You can put air into tubes which can cause it. You can put anti coagulant instead of coagulant. They can bleed out. So much stress. I have helped on PD for three years, changing many dressings, cleaning and setting up machine, carrying heavy boxes upstairs, stock control etc. But, I cannot do needling. I'm worn out yet hospital don't care. It's to get payment for sending outing home not benefits. Anyway how can you have better quality of life when a hospital unit us in the bedroom next door. You are never away from it so patient never has peace.
Why is careers thoughts and stress never considered. I've just finished 10 years of looking after dementia mother and husband on PD, my life has not been my isn't. NHS gas taken up I we and no consideration given of listened to. I feel like running away.
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Re: From a relative's perspective

Postby AmandaClare » Sun May 22, 2016 1:12 pm

Hi StephN

Not much to add to the other replies, just to say that I'm sorry you're going through such a lot. It should be a happy and exciting time, first proper job etc, but there's a huge cloud over things.

I know you want to support your mum, but take care of yourself and your new career too.

Amanda x
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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