Peace, Love and a Kidney for Joyce

Joyce has been a good friend of mine for years. I love Joyce. She is the kind of person you can talk to about anything and she cares. But Joyce does not talk about herself and her difficulties in her life. But Joyce needs help now.  I finally got Joyce to write down everything she has gone through in her life so other friends can understand and possibly help our good friend. Below is Joyce’s story. 

As a young kid I used to love being outside in the summer. Riding my bike, playing kickball, and just plain old running around in the fresh air.  In my teenage years, I was still riding my bike, sitting on the hill in the backyard reading a book and walking to the library.  But in my late teens I noticed that my knees would hurt when riding my bike and sometimes, after being outside all day, it looked like my fingers would swell a little bit.

Fast forward to 1990.  After a day long in June of celebrating my sister's college graduation, I was in so much pain.  My joints hurt so bad, and my legs were so swollen that I literally had to crawl up the stairs to my bedroom.  I woke up the next morning feeling fine.  After a few days of off and on swelling and then having blood in my urine, I went to the doctor.  The Physicians Assistant told me that I had a bladder infection and dismissed me telling me to drink some cranberry juice.  I went back to office, this time seeing the doctor himself, with the same symptoms.  After seeing him a couples of time with finding nothing wrong, I was sent to a urologist.  Nothing showed up.  I finally ended up at a Nephrologist office doing more blood work.  By this time, my daily routine was working, taking a nap on my lunch break, coming home and going to sleep all night.  This continued until I was too exhausted to even get out of bed.  I was eventually put on medical leave as I was too tired to work, couldn't keep anything on my stomach and was in and out of the hospital.  The Nephrologist testing showed that there was something wrong with my kidneys, but he didn't know what.  He was so baffled that he was going to refer me to the University of Michigan for testing.  All of a sudden, out of my mouth, I said, "My mom has Lupus."  He politely took my hand, helped me off the table, and hand in hand, walked me over to the lab for blood.  A week later I was told not only do I have Lupus, but I had Systemic Lupus Erythematosus (SLE).

Lupus is a chronic inflammatory autoimmune disease. There are three types of Lupus, SLE being the most serious, affecting almost any organ, joints, central nervous system and more.  I believe in the beginning of all this testing that I never thought of Lupus because my mother has Discoid Lupus, which usually causes a "butterfly" rash on the face.

The next 25 years weren't without challenges:  chemo treatments, hospitalizations, monthly doctor appointments with several different doctors and kidney biopsies (oh so painful as I was awake with a needle slowly going into my back) and the medical bills piling up - still continue to pile up.  On September 15, 2015, I started dialysis, three days a week for four hours each run.  It was really tough in the beginning.  After treatment, I would be so exhausted that there were times when I could not even make it upstairs to my bedroom.  On the days that I didn't have treatment, I was just tired.  My best day is on a Monday before dialysis. 

The Physician Assistant at dialysis had been pushing me for a few years to get on the transplant list, but I kept stalling because I was afraid that I would be told I couldn't get a kidney because of Lupus or they would find something else wrong during the work up.  Earlier this summer, I decided it was time, I would deal with rejection it happened.  Never in my wildest dreams did I think I would be turned down because the transplant center said that I didn't have adequate insurance.  Medicare will only pay 80% of the $400,000 transplant which would leave me with paying $80,000.  It turns out that I cannot get a supplemental insurance plan because I'm not 65.  My first thought was that Medicare would rather pay $11 million over the next years until I reach 65.  By no means am I knocking the government, and if they won't budge on the 80%, at least they and/or the transplant center should offer other resources. 

Today, I can no longer enjoy the summers as I use to.  The sun burns my skin, and I experience heat exhaustion if I'm out too long.  Now I enjoy the fall, winter, and the early part of spring. 

I thank God for my family who is always at the ready to do whatever I need for them to do.  I thank God for my friends who continually send prayers my way, keep me laughing, and also lend a shoulder to cry on if needed.  This was not the life I had envisioned growing  up but it's the life I was given.  I thank God that I am still alive and living the best life possible.

I would like to thank Elyse for setting up the GoFundMe page.  They so much wanted to help in some kind of way, and I most appreciate them for doing this.  And I would like thank you, the reader, for taking the time out of your day to read my story.  Thank you for any donation that you give.  No amount is too small.

Blessing,
Joyce