…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…

What do you do if three sides of the structure that surrounds you, falls down and there’s only one side left to hold up the roof?  That’s what my world has felt like these past two days.  Surrounded by sadness, in enveloping completeness, my happy world has come tumbling down like a house that has lost three of its walls.  Yesterday was the worst day of my life.  Literally.  Figuratively.  Completely.

My husband.  My life.  My love.  The father of my beautiful children is very, very sick right now.  We had to rush him to the hospital yesterday and the outcome is unknown.  Praying for the best, knowing there is going to be a long road of recovery, and lifestyle changes ahead of him.

I can’t sleep at night.  I keep thinking about the conversation I had with my wonderful Mother-in-law when I had to tell her that her only son was in the Hospital Emergency Room, his kidneys shutting down, his blood-pressure sky-rocketing out of control.  “Are you kidding me??!??” she screamed at me through the phone.  God I wish I was.   I wished it could have been just a horrible prank.  The angst in her voice was audible, the fear of the unknown, for his safety was obvious.  I cried as I talked to her.  It was difficult to speak at some moments as I tried to relive the very worst moments of my life and tell her what I really wanted to be a lie.  It was surreal, I hoped I was dreaming.  I kept thinking of how much I needed him, how much I still need him and will continue to need him in the future.  His kids need him so much, they keep asking where he is.  I simply tell them Daddy’s at work.  “But Mom, his car is here, did Daddy walk to work this morning…?”  I won’t be able to fool her for long.

He is my “Bum”.  That moniker was given to him 10 years ago when we were first dating.  He was unemployed at the time and at first he was insulted when I called him a “bum”.  He thought I was referring to his job status – but I meant it as something greater, cute as a baby’s bum … I can’t live without my “Bum”.  Even though we have some horrible fights sometimes, I still love him.  Sorry honey, you can’t get rid of me that easily.

He’s “better” … for lack of a better word … today.  I use the term very loosely.  He’s still in the ICU at one of the best area hospitals for Renal issues.  I will never forget the chill that ran though every fibre of my being when he called me to tell me he was heading to the Emergency Department as ordered by our doctor.

The past two days have been in slow motion.  Between the hospital visits and trying to take care of our kids and remembering to eat now and again and running on about three hours sleep the last couple of days.   We’ve been hit by lightning it seems.  Without the wonderful support I/we’ve received from our friends and family I don’t know if I would have gotten through to this stage with my sanity intact.  It’s still questionable.  A part of me is missing because he’s not home.  I miss him.  Please get better soon, Bum.  I love you.  We all need you.

Wednesday is our third Wedding Anniversary.  We’ll spend it together, in the hospital.