Hello from a newbie :)

[familyfirst]

Hi all,

My name is Emma (F) and I'm the newbie

So my partner (31) has a kidney disease called IGA Nephropathy. He received a kidney transplant from his dad 7 years ago but unfortunately in September this year the kidney began to fail and he started PD. PD didn't work as well as was hoped and in November he began HD. All this was happening whist I was pregnant with our first child (who came into this world on 7th December). It was a pretty tough few months for us all and we were so happy once he began HD thinking he would feel better ONLY he doesn't, he is often sick and always feeling sick. He is always tired and spent the 3 days over xmas (xmas eve to boxing day) in bed. It is so hard to see him struggling this way. We had the appointment to get him back on the transplant list last week (and I will keep everything crossed) I am also going to be tested to see if I am a possible match to donate a kidney.

I was just after some advice (which is how I stumbled upon this website) on things he could do before/after or during dialysis to stop some of the horrible side effects. Or anything I can do to help him. Watching someone you love go through this is heart breaking - and I can only imagine actually going through it is a million times worse!!

Thanks in advance for any help

[Michael Murphy]

Most have a problems when they start dialysis.  Just getting the right dry weight is often a problem.  The other problem is if you drink too much fluid they will take off as much fluid as they can the more they take off the more dialysis kicks your butt.  What you need to do is help him keep to whatever his fluid restriction is. 32 oz means just that the more you drink or consume above that the more they will have to remove. Rember too much fluid retention can kill you if you are a dialysis patient.  The more you know about his limits the more you can help him stay within those limits. Over indulge and  you will pay at the next dialysis session.

[Rerun]

Yes, what Michael said.... plus salt makes you thirsty so limit the salt.  Also, if they offer a longer session he should take it.  I know it sounds horrible, but longer is better cleaner blood. 

 

Rerun, Admin.

[Simon Dog]

I was feeling pretty much OK when on in-clinic hemo (doing NxStage now), but I have heard that many people who feel sick when doing in-center feel quite a bit better with the more frequent home treatment.    You might want to look into this option while pursuing a transplant.

On the NxStage now and feeling pretty good....

[familyfirst]

Thanks all,

He is looking at doing home hemo but it can take 6-12 months to complete the training apparently (UK).

[Darthvadar]

Hello Family First.... Sorry I've taken so long to say  to IHD.... Didn't see you there....

Visit us often... We're a nice bunch...

Look forward to seeing a lot of you!....

Darth... Moderator...

[Simon Dog]

He is looking at doing home hemo but it can take 6-12 months to complete the training apparently (UK).

I hope they mean a 6-12 month waitlist to get trained.   I can't imagine taking 6-12 months to "complete the training".

[Charlie B53]

I've always been a little heavy, not overly.  Dr's may call it obese, but I don't think 30 or 40 pounds is THAT much when you've carried it fine all my life.

Whatever......

Since I started dialysis it has developed into diabetic, and I now use insulin, at every meal.

So watch his weight, responsible foods, no junk.  Try to eat more responsible, less salt, fat, and sugars.  Don't expect to make any radical changes, but slowly start switching to healthier foods, if possible.  Give it a year or more then you can see a measurable difference in health, and size, IF he's as large as I was.

[iolaire]

Thanks in advance for any help

Welcome, this site has a wealth of advice and varied perspectives on things.  Some members have decades of dialysis under their belt.

You can (and probably are) make things easier by being supportive during this rough patch. 

Yesterday I did an assessment that my social worker passed out and one question that I noted was along the lines of "do you feel like you are a burden to your family."  I went home and told/thanked my wife for being so supportive.  She picks me up in our car after almost all sessions and after some initial reservations is supportive of our continuing to travel internationally and me receiving treatment abroad.  I know this is lifestyle change is stressful but she has helped things by not stressing about it too much and being accepting of the changes in our day to day routine.

[familyfirst]

He is looking at doing home hemo but it can take 6-12 months to complete the training apparently (UK).

I hope they mean a 6-12 month waitlist to get trained.   I can't imagine taking 6-12 months to "complete the training".

No, I'm told that is to complete the training! we also found out that his fistula hasn't worked (didn't know that was possible) that he had done about 3 weeks ago so he is in for another op over the coming weeks

We have my appointment to be assessed as a donor tomorrow so fingers crossed for that.

[familyfirst]

Thanks in advance for any help

Welcome, this site has a wealth of advice and varied perspectives on things.  Some members have decades of dialysis under their belt.

You can (and probably are) make things easier by being supportive during this rough patch. 

Yesterday I did an assessment that my social worker passed out and one question that I noted was along the lines of "do you feel like you are a burden to your family."  I went home and told/thanked my wife for being so supportive.  She picks me up in our car after almost all sessions and after some initial reservations is supportive of our continuing to travel internationally and me receiving treatment abroad.  I know this is lifestyle change is stressful but she has helped things by not stressing about it too much and being accepting of the changes in our day to day routine.

I am glad to hear you have such a supportive wife and she is probably a lot stronger than I am, as I worry about everything and already dread the first holiday we take for fear of the dialysis centres not being clean and up to the standards we are use to. My partner is a lot more laid back about things but I am a worrier by nature!

Things seem to have changed for the better with my partner and maybe he has adjusted to the dialysis, I have to say I found more information on this site than we were given in the dialysis centre and it has been a massive help, it has also made me feel good that I have been able to find some information and offer advice to him. I hope it shows him how committed I am to understanding his journey and helping in any way I can. So I thank everyone on this website as I have read plenty of the threads whilst on my search for information