Waiting for a Kidney — The Jay Robare Story
Jay Robare of Florida designed the Save the Arizona 98 poster. Jay, is waiting for a kidney transplant. I offer these stories in order to get people to join the Save the Arizona 98 movement. In case you missed it Arizona first promised then denied 98 of its pre-approved citizens that Medicaid would pay for their organ transplants. These people will die without the procedure.
“Save the Arizona 98” is a two fold program. 1) to work to reverse the decision to disallow Medicaid payment for transplants and 2) to raise money for the transplants in case the decision is not reversed. If the decision is reversed the money raised can go to other transplant patients in need. Please read my blogs about the issue and use the links provided below to join our group. Here’s Jay’s story in his own words.
Jay Robare’s story
Waiting for a Kidney
By the time that I was approved for Medicare, I had gone through all my savings and my limited insurance coverage. I had to quit working because my endurance was gone and because I was not working, I could not afford my apartment anymore and I had to start living with others that helped me out. I lost all my furniture and most of my art equipment.
I finally got disability insurance and was qualified for Medicare but not Medicaid since I was making too much money from disability; I got enough to pay rent and had some money for paper products, which costs a lot. I have to dry my hands on paper towels to stay sterile.
I was blessed with $200 in food stamps last year but that has been decreased too; I am out of food by the third week of the month. I keep asking for rides to the various food banks but people are too busy. I am not the only one going through this; most people just can’t understand the magnitude of what we are going through in our lives and in our bodies. I know everyone is having problems for I hear that al the time but when I got sick and started working to get on the waiting list, all my doctors and nurses treated me like I was given a special gift which it is…the gift of life but many people would rather worry about their financial or relationship problem that they will outlive. We won’t outlive our problems, they are literary killing us.
I didn’t even talk about having to do dialysis every night. The type of dialysis that I do is called Peritoneal Dialysis where I store 2,500 milliliters of sugar saline solution for 2 and a half hour cycles 4 times which is all carbohydrates. I have gained 30 Lbs and I look very well fed; my fried Dirk said I looked like I had a beer belly…my last beer was a Heineken last Christmas. One nice thing about PD instead of hemo dialysis is that I have no liquid restraints. On hemo, I could only have 60 Oz a day or I would risk cramping and THAT was a bitch. Cramps formed in muscles that I thought I never had and the pain was so bad it made me yell out for Jesus…made my tech laugh at me.
Speaking of techs, I had clowns that would not listen to me and do the treatment their own way ending up hurting me. For you on Hemo, THIS IS YOUR TREATMENT AND YOUR BODY, don’t take any crap from these people; make sure that your nurse knows and the director knows that you do not want this person touching you again. Another thing that I like about PD is that it is robbing my body of potassium and this lets me eat things that hemo would never let me eat like bananas, mashed potatoes, spinach, hummus, vegetables and fruits. I do have to take something called a binder every time that I eat something. This medicine absorbs all the phosphorus in the food. The binder can be nasty at times, it is very dry and tastes like I am eating chalk. The chalk does a good job but sometimes it is difficult to take. The meds are a chewable but I think they are coming out with a powder soon.
Another med that I have to take because of PD and a bad parathyroid, caused by ESKD is a drug called Zemplar and Sensipar. Both keep my calcium land my PTH levels down. The only problem is that Sensipar has made me nauseous for the last 4 years; I have been throwing up every time I took this drug for 7-8 months. I guess my body has had enough. The doctors, dietitians and I have been playing games for years. I have finally decided to have a perthyroidectomy. After this surgery, I will need to start taking calcium supplements, including eating more pizza and lasagna…LOL I
I get extremely tired sometimes during the day from either walking to the bus stop and going to Publix to get some noodles or walking from the bus stop to my Davita dialysis clinic to get labs done every Monday or Tuesday; I need to send a vile of blood to my transplant hospital every week so they can keep an aye on my health and changes in my DNA.
Last month I had weird liver numbers and they ordered a full set of tests including a liver biopsy which scared me. My local doctors were thinking that I had a liver disease which stored too much copper in my system; they called it Wilson’s disease. Before I got the biopsy, I thought that I was going to have to get a liver transplant as well as a new kidney…I was a wreck! The day of the biopsy came and I wanted to get knocked out but before I knew it, I herd a clink and it was done. I worried for a week but the results came back and I was clean, no Wilson’s disease. Within a week Ann, my transplant coordinator took me off hold and I was back on the waiting list.
I met Bob Aronson about 3 months ago on Facebook. I used to read all his stuff and I, being a troublemaker, would contradict the man. I soon learned that the guy not only knew his stuff but he was a good writer too, we buried the axe and became friends.
This thing with the Arizona 98 has got me drawing again; I used to be so bummed out about not having a life, I gave up drawing but thanks to Betsy, one of my very good friends and Bob, I am drawing caricatures and designing flyers again.
Life is tough sometimes but with my friends, my faith in God and His son Jesus and now that I am drawing again, I can think I can make it through the storm until I get my kidney. I hope this has helped someone.
Don’t forget the Arizona 98 campaign. there is more information on this blogsite and you can offer futher support by visiting www.savethearizona98.com. You can also visit and join my Facebook site, ORGAN Transplant Initiative http://www.facebook.com/group.php?gid=152655364765710 OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ .
The more members we get the greater our impact on increasing life saving organ donation
Please comment in the space provided or email your thoughts to me at firstname.lastname@example.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be a donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.