…And Bells on Her Toes

My heart stopped today.  Not literally, but figuratively.  My sweet boy is in end-stage renal failure.  I couldn’t take in the words when he told me.  I just missed the doctor, but as soon as I entered my Husband’s room and I saw his face, I knew it wasn’t good.  He has IgA Nephropathy, a disease that has caused his kidneys to stop functioning.  He has less than 1/3 kidney function left and they won’t get better.  Of the twelve or so biopsy samples they took from his one kidney, eight were scarred and the others were showing signs of pre-scarring.  IgA pretty much happens when you get a cold and your body sends these IgA Antibodies out to fight the infection, however they seem to think the kidneys are a threat as well and proceed to destroy those too.  It is characterized by these symptoms:  blood in the urine, nausea, fatigue, vomiting, high blood pressure.  He’s had all of them.  The only good thing is that it doesn’t affect other organs.

IgA is a silent disease that sneaks up on you over the years.  According to the articles I’ve read tonight, it can take 10-20 years to finally cause any symptoms that you can feel.  It’s a progressive disease.  It sucks.  He will have to be on dialysis for the rest. of. his. life.  Right now he’s on Hemodialysis – this is the kind that you would probably picture in your mind if you were thinking of it.  They hook you up to a bunch of tubes and a big machine they call the “washing machine” and clean your blood, taking the place of a proper, healthy kidney.  He’s a candidate for Peritoneal Dialysis where they stick a tube in your belly and fill it full of liquids that draw out the poisons in your blood.  The only good thing about this version is that you can do dialysis at home and only need to go to the Hospital once every six weeks or so, instead of every other day – not convenient when you have wee ones running around the house, or want to work for that matter.

Work.  That’s the million dollar question.  He has a very good union job, something I’ve been grateful of for the past few years while the economy has sucked.   Alex seems to think that he’s going back to work soon.  I think he should take it easy for a few days at least and give his poor body a break, after all he’s only been out of ICU for four days … I don’t think it’s too much to ask.  If he goes on Peritoneal Dialysis, he will be able to do most things he could do pre-trauma.  If he stays on Hemodialysis, it will be much more difficult.  We will do what we have to do to get through this.

A major pro of Peritoneal Dialysis is that he doesn’t have to watch his diet as religiously as he would with Hemodialysis.  With Hemodialysis, because he’s not doing dialysis every day, it’s very important to be extra cautious with his diet – to control the potassium, sodium and phosphorous levels.

He has another option.  A transplant.  While this may seem to be the best choice, we need a compatible donor and there is a chance that the IgA may come back and kill off that kidney too … there’s a lot of thinking to do.

I’m bringing the girls to see him tomorrow.  He hasn’t seen them in eight days.   That’s the longest they’ve been apart and they miss each other.  Lexy and Caity drew him beautiful pictures for his hospital room – kids think in the most simplest terms, a hand-drawn picture will cure anything … if only …

I did ask the Social Worker who came by to see how ‘well’ we were coping today, if she thought this disease was Warcraft related … Alex rolled his eyes at me.  I wouldn’t be surprised…