Personal Complications

One week after going on Short Term Disability, I got the phone call no daughter ever wants to get about a parent. Oh Daddy.

My Daddy, Charles Robert Hunt (1941-2012)

I’ve suffered a lot of personal tragedy in my life. You’d think someone in their mid to late thirties wouldn’t know a lot about death, but unfortunately, I’m intimately familiar.

I lost both set of grandparents. Three to cancer, one to emphysema.

I lost my mother in 2000 to heart disease and emphysema. 

I lost a sister to brain cancer in 2003.

I lost a brother. He died of a tragic household accident before I was even born.

My father was diagnosed with Multiple Myeloma just after my sister died in 2003.  He went in for a routine physical with blood work. The labs were off. He had to go back in for more testing and just after Christmas he got the news. 

Over the course of several years, he battled the disease. He attained remission a couple of times, but the disease, being in his blood would continue to come back. He had two stem cell transplants and had taken lots of experimental drugs. None worked long term.

The chemo he took routinely ate away at his hips and bones. It was extremely painful.  A few years back he had to have a hip replacement. It went well. So, in 2011, he had the other hip replaced. In January 2012, he began complaining of pain.  Everyone thought he might have an infection in his new hip, but all the tests came back inconclusive. Over time, he continued to get worse. The pain was awful. The pain meds were worse.  In June 2012, his doctor finally ordered an x-ray.  They found a tumor on his spine. Lumbar region.  Several vertebrae were just shards. The only one in tact was the one attached to the tumor. No wonder he was in so much pain. They tried radiation to reduce the tumor, but it didn’t work. They tried chemo again, but it too didn’t work.

At the end of September, his blood was really low. He was anemic and his blood platelets weren’t reproducing. He was growing weaker and weaker.  On Thursday, September 27, his doctor told him there wasn’t anything more they could do for him. Just like that.  His body had quit producing blood. Without blood, no oxygen. No oxygen, his organs would begin to shut down one by one. Brain damage would occur.

My wonderful step-monster (laugh), Sandra, called in Hospice. They came in on Friday, Sept 28th. Terry and I drove over that evening. My sister Brenda and my brother Nick were already there. 

Dad was ready. He had already made up his mind. It was just that simple.  Hospice was wonderful. Attentive. Compassionate. Accommodating.

Sandra worked on preparing the funeral.  What a gift she is to our family.  A wonderful woman.

Dad passed away on Monday, Oct 1.  We buried him on Wednesday, Oct 3.

What does this have to do with FSGS?  Aside from the emotional stress and grief, I wasn’t following my diet. I was eating everything and anything.  People donated food. We ate out. Everything had salt in it. And I didn’t really care what I ate. I was at that point.

I was swelling day by day. And by the time I got to the graveside services, I had one foot in the one next to Dad. I was swollen, puffy and in extreme pain. I could barely walk. Terry was on one side of me and Brenda on the other, holding me up.

The church held a luncheon for the family after the service and I had to be carried inside. They found me a wheelchair. I have never been so embarrassed in my life. I was ashamed that I had gotten so bad.

I returned to Augusta and went to my doctor. My levels continued to go up. Dr. Asshole put me on more Cyclo. More Pred. Anything to get my levels to go back down. It took me almost a month to get my body back on the right eating schedule, back on my diet. It took longer than that to get the swelling to go down.  By then, the effects of the Cyclo were taking their toll on me. The swelling had moved from my feet, ankles and legs into my abdomen, arms and breasts.  My face grew into a full moon, huge, round and puffy. My eyes sunken into my head. I looked horrendous.

To make matters even worse, the Cyclo suppresses the immune system. I was now susceptible to viruses, the flu. I was reduced to wearing a surgical mask to the store if and when I went out. Terry and I were pretty much trapped inside the house. We only went out for groceries, medications, and doctors appointments.

The week after we got back from Dad’s funeral, Terry’s Uncle James passed away. We made it to the viewing, but not the funeral. I was in too much pain.

Emotionally, I was the lowest I could go.