PKD Gets to Know Michael

We had the renal dietician come to our home as our doctor had recommended.  That evening sitting around our dining room table listening to her monotone voice go over the list of foods that were acceptable on the kidney friendly diet made our heads spin.   We would have to now be aware of protein (ie. meat, eggs, milk, beans, peanuts), sodium (ie soups, condiments), potassium (ie. bananas, oranges, tomatoes, potatoes), phosphorous (ie. marine products). The list just went on and on with some foods being completely off the plate, others in limited amounts. The day after meeting with the dietician, I started printing out lists of kidney friendly foods and organizing them in a 3-ring binder,  there was too much to remember. I tend to feel less overwhelmed when I stay busy, this was my way of feeling productive and managing the "new" food pyramid.

Michael, not feeling completely comfortable with the vague answers we heard from the doctor decided he wanted to look for a new nephrologist. I remember my friend Suzanne telling me that her brother-in-law Joe had donated a kidney to his brother a few years back so I called her (there must be something with the name "Joe" and being a donor).  She spoke to Joe who highly recommended Dr. Weinstein.  Dr. Weinstein is a lean middle aged man with black framed glasses, his personality seems to be relaxed, precise and readily to provide practical answers.  He normally walks in, sits on his stool, crosses his lean legs and flips through the patient file.  I've seen him a couple of times coming from the vending machines outside the patient waiting room with a Diet Coke and Oreo's, I don't know why that stayed on my mind but it brought a comfort to me, he was being so normal and eating so bad, just like the rest of us - could a Diet Coke and Oreo's actually humanize a person?  During our first visit, he examined Michael and asked me if I wanted to feel the cysts on Michael's kidneys.  I was intrigued and touched exactly where he asked me to and sure enough, I could feel his enlarged kidneys as well as the cysts that felt like smooth grapes under his skin.  We were relieved to get specific answers to our questions.  Dr. Weinstein calculated that Michael's kidneys would last about 3 years before needing a transplant. His plan was to keep Michael off dialysis since its difficult on the body, our goal and focus became transplant before dialysis.  He thought that the dietitian had restricted Michael's diet too much, in his matter of fact way he said that he didn't feel that restricting Michael's diet would be of much benefit to his decreasing kidney function.  He was losing his kidney's at a consistent rate and there was no turning that around.  He was RIGHT! Michael rarely stuck to his renal diet, his kidney's lasted 2 years 11 months before needing his transplant.  We would visit with Dr. Weinstein every 3-6 months and get blood-work every 3 months and that changed to every month when his kidney function went below 20%. As Michael's kidney function decreased, Dr. Weinstein would prescribe additional medicines to counteract the negative effects  that were happening inside Michael's body due to the kidney decrease. We were happy with Dr. Weinstein, but Michael was still thinking, still researching, still looking outside the traditional box.  I admire this quality in Michael, its one I don't have but am so happy that Michael doesn't accept the "status quo".  He continued his research.

Michael and Joe have been sight-seeing in Chicago during their down time. The weather, though a bit colder earlier in the week has warmed up to the mid-60's.   They are staying at the Hilton Homewood hotel just a 10 minute walk from the hospital and are enjoying their stay. A free hot breakfast is provided every morning and a free light dinner Monday-Thursday.  It was important that we found a hotel with as many amenities as possible and close to the hospital since Michael's 2.5 month stay in Chicago for hotel alone will be over $10,000.00 (and this is the "discounted" price for hospital patients).  Today Michael and Joe are worshipping at Willow Creek Church. Michael texted me that it was the biggest church he has ever seen.  It looks like a mall inside and even has restaurants!  Sounds immense!  I'm happy they are getting to do fun things as they prepare to go through this life giving journey together.  

The free dinner at the Hilton Homewood.

Sandwich Buffet at the Hilton Homewood - free as well.

Heated indoor pool!

Joe doing a bit of sight-seeing.

Michael always finds animals to love on!

 Willow Creek Church - Chicago

18 Days to Transplant.  We pray for all those suffering with this disease as well as their families.  You are not alone, and neither are we.


God's Blessings.  Lilly :)