Tag Archives: iga nephropathy

Summer Started Out Great, and Then…

I’m having trouble concentrating on any one thing. I’ll tell you why.

This June started out great. It was the end of my daughter’s junior year of high school. She received a huge, unexpected scholarship from R.I.T. (so proud of her!) and it looked like everything else was going great for our family. The biggest problem was trying to figure out how she’d get the rest of the money for school by the end of her senior year.

A week later, I ended up in the hospital. It started with a bloody nose that wouldn’t quit. Learned I had extremely high blood pressure and my kidneys functioned at less than 15%. After a bunch of tests and biopsy, we learned I have IgA Nephropathy. Probably had it for at least 20 years. No diabetes, no doing anything to myself to get to this. It just is. I am, otherwise, healthy.

I was told I’ll need a transplant and that I should get an AV fistula fast in case I need to go on dialysis before that can happen. All this, I learned in July. Not long after, my husband was laid off after 23 years of working for the same person. It seemed his boss (the same boss we’ve done things for over the years like family) didn’t like that his hardest and more reliable worker would have to take a few days off to be at his wife’s side. He made up some other excuse, of course. But we know the truth. My husband was the highest paid and, even though he opened the business each day and barely ever missed a day in all the years, it was an opportunity for his boss to get rid of him and hire two more guys making far less. Maybe it makes sense somewhere along the lines, but I can’t say it doesn’t hurt like hell to us. Especially with the timing.

While this was going on, I had to fight for health insurance. Couldn’t get it easily before when we had jobs. They wanted too much a month. And yes, we were penalized on last years income tax. It wasn’t like we didn’t want health insurance. It was impossible to afford it. Anyone owning property in New York knows our problem. The taxes for property and school alone are sky high, while businesses are disappearing. Jobs that are left suck. Any hope of starting up your own business ends quick because our state always finds ways to need (demand) our money. Apparently, more than we do. It’s for the greater good and all. Yadda Yadda.

The one good thing about losing a long time job is that now we have health insurance. I say that with a bit of sarcasm. I hate, hate, hate having to rely on government at all. It took 30 days after he lost his job to get health insurance. And because I didn’t have it, I wasn’t allowed on the transplant list yet. I wasn’t seen to put an AV fistula in until late September either.

That in itself was an ordeal. Traveling 80 miles to Syracuse with nothing, but unemployment to support us. Had to go up once to meet the surgeon. Again for pretesting, which could have been done near us, and again for the surgery. I was there for the surgery. The doctor wasn’t. Not his fault. There was an emergency. So, after 16 hours of fasting, they finally gave me some food and sent me home. They rescheduled for October.

In between this, we had to go back to Syracuse to learn what we needed to do to get on the transplant list. A lot, but I’m happy to say all, but one of it is done now. Just have to get a note from the dentist, which I will be seeing today.

The AV fistula surgery went well. At least, we thought. For two weeks I couldn’t use my left hand much. The artery and vein were fused in my wrist. So, it made it a little hard to move. When it was time to go get the stitches out, they told me that I had to do some short surgery thing where they put a thin catheter in my artery/vein to widen them, or see if it works. Ten minutes into it I felt the worst Charlie horse throughout my arm. As they tried to numb the pain, I felt the needles. They ended it and said the surgery worked, but was unusable.

It seems I have a calcium build up in the way. The doctor told me not to worry. I had to do more ultrasounds on my arms and they’ll reschedule another surgery. He said my kidney doctor seems to think there’s no hurry on it. Which is not what my kidney doctor told me. That, and it can take up to 6 months to get it working.

It’s been almost two weeks since that happened. My arm looks like someone beat the crap out of me. New, angry bruises keep showing up, while the others are fading. I was finally able to straighten it out a few days ago. The pain was unbearable. I ended up using the pain killers they gave me for surgery that I didn’t end up needing at the time. Still, they didn’t touch this pain. My wrist aches as the weather gets colder and my tendinitis is acting up. Most likely from the way my arm was held as they tortured…I mean, worked on me. I keep being told I have the best kidney doctors and surgeons around. Yet, I feel miserable. Not from my kidneys though. No pain at all there. The pain is all from what they’ve done. I haven’t mentioned everything.

I’m thankful at this moment that I feel no pain from my kidneys. I’m stressed beyond belief though. I keep trying not to be. It’s hard. So many bad things keep happening. I cry every time someone asks me how it’s going. Then I get mad at myself for crying. I have always been the independent one and now I have to rely on strangers. Let doctors and government decide if I get to live or die based on their rules.

This is my daughter’s senior year. I looked forward to sharing her excitement with it. There’s still so much to do until graduation. But the last few months have all centered on me. And I hate that. I’m trying to turn things around though. And hey, like I said, I have most of what I need to get done to get on the transplant list.

So, this is why this blog has been neglected and I’m sorry. Will still try to make something of it though. I’ll feel better. I’m sure.

Thanks for listening.

-Trace