Hi

[Relentless]

I'm 32. Started dialysis in march/2010, they say tht I have IGA neph. Been listed for transplant but just found out tht type B blood type wait is 1200 days.  More headache.  Work 31 hours a week now because I have to leave a 2pm mon wend fri for dialysis.  Don't know how much work is going to be ok with me leaving early, they know I go to dialysis but I told them everything will be over in may/2011 because they kept asking whts going with me leaving early.  Didn't even know I had kidney failure until I went to ER voluntary because I had side effect from infection med  tht family doc gave me.  Tht trip turned into 9 days in hospital, which 5 was in icu.  My blood pressure was 220/180 whn I went in and the scary thing was I felt fine. They sd tht my body got so used to pressure being so I high tht I couldn't tell the difference, but whn tht started to give me pills to bring it down my head started spinning.  Right now I'm in the process if getting my parents tested for donor. They are both 59 so not sure how thts going to turn out.  Thy sd tht I still have 8% left of kidney so I'm still able to pee a little which I'm grateful. It's funny how peole forsake the smallest thing like peeing until it's gone.  If the kidney donor don't work out (no knock on wood) thn I'm seriously going to have to look into home hemo so I can work full-time and it doesn't help tht I'm single guy who just built a house and bougt a new Benz in the last year.  Stuff like this always seems to happen at the worst time.  I work at a finacial firm so job is stressful as it can be. All can say is I know the pain tht everybody goes thru mentally and physically specially the pain and stress family goes thru with u.  They say misery loves company and maybe thts why come here everyday to know tht there's other who knows wht I'm going thru.  I REALLY hope tht the same people I see post here has a transplant in short while including me with in next couple of years and even if u can't still see u posting here 10 years down the road.

[LostWife]

Hi there Relentless.  My husband also has IGaN, high BP, and is b+ blood type.  Where are you getting listed for transplant?  Different centers have different waiting times, so we researched that and moved our waiting time from one center to another because of that.  I am AB+ and I constantly wish he was too b/c the waiting time is so much shorter!

My husband does PD dialysis  and for the most part has been able to work but has a lot of other issues that have sent him back and forth to the hospital.  I'm constantly living in fear that he'll lose his job and health insurance.    You are not alone.

[boswife]

  A very big welcome to you Relentles.  Amazing journey this is for sure and im glad you found your way here..  We're just beginning training for home D though we did have a pretty good experience with in center...  Hope ya hang around and share someore...

[MooseMom]

Kidney disease IS rather inconvenient, isn't it.   I hope that your work colleagues will give you some leeway.  When I was younger and was working, I worked in the City of London in the financial district, so I have an idea of how stressful that sort of job is.  The culture is not very amenable to taking time off for health reasons; I hope your firm is different.  Maybe times have changed.  Anyway, I'm glad you posted and introduced yourself. 

[monrein]

   and I hope you'll find IHD as important to your sanity as many of us do.

[galvo]

G'day Relentless and  .

[RichardMEL]

G'day Relentless and welcome to IHD. You know you can still have a transplant and keep posting here in 10 years - we'd all love that!!!

I sense and understand your frustration at your situation. It's even harder since you had such little warning as to what was going on.

I was on dialysis for 4 and a half years before my gift arrived just 3 weeks ago so I understand where you are coming from both in terms of your work dilemma and waiting for that special call. All I can offer from my experience is that I found my workplace very supportive as long as I was honest and up front with them about my situation. While you are waiting for home dialysis, is there any chance you could try to get your shift changed to Tues/Thurs/Sat? I was on that right through which meant I only missed 2 work afternoons a week rather than 3, which I think really was helpful. I guess though that it would be hard to get on those days since everyone who works would probably want that. Still I am sure you could ask to go on a waitlist or something - that might help and if you can do it show your work that you're doing everything you can to reduce the impact on them. Does your unit have a very early or later shift on the mo/wed/fri that you could move to that again might reduce the impact on your work? Or even nocturnal? Maybe there might be another unit close by that can offer you something else. It might pay to talk to the social worker about these issues.

The thing to remember is that YOU and YOUR HEALTH (not your work!) need to come first!!!! Try to not let these issues stress you too much (won't help your kidney function any or BP) and try and focus on all the positives you have in your life right now. I know you're probably thinking "Easy for you to say - you just got a transplant!" and I wouldn't blame you for thinking that, but I'm still got a road to go down with its own sets of bumps and challenges....

Anyway good to have you with us and hope we can help support you on your journey!

RichardMEL, Moderator

[looneytunes]

Hello Relentless and welcome to IHD