Update of Oct. 9, 2013


Update of Oct. 9, 2013

2013-Unity-bannerThursday: The store opening was a success as we found some good buys and the store was not as crowded as we thought it would be. Received call from dialysis nurse case manager that the antibiotic prescription was sent to the pharmacy.

Friday: Found out from social worker that I will not be able to complete the process for being paid for taking care of Mom because the paperwork is not being processed with the government shutdown and we are not even able to file it until the government reopens.

Saturday: The weather was better than expected so we went to watch the Big Muddy Run, a fundraiser for the children's museum. The runners go through a foam pit (soap suds), a slip and slide, mud pits and other obstacles.

Sunday: We spent the day doing monthly supply shopping and had fun just being out together. We also made homemade low sodium chili to eat today; it simmered all day in the crockpot during our shopping. It was very good.

Monday: We received a call from the transplant coordinator that they considered my mother’s stress test as abnormal. She had a pharmaceutical stress test and it was read locally by a radiologist who listed it as inconclusive because of her previous bypass. So we had to set up an appointment with the cardiologist to have a full review and set up a treatment plan if we want to get her on the kidney transplant list. Locally they do not consider it urgent so she is scheduled to see the cardiologist on Halloween. She also received one of her hepatitis vaccinations at dialysis today and we were informed that on the 14th she will receive her flu shot at dialysis.

Tuesday: We just took as a day of rest as none of us had any appointments so Mom and I slept in. My friend went back to bed after his weekday provider left. My friend also found out that the transportation provider contracted by his managed care organization goes through is no longer going to provide evening or weekend rides (only runs Monday through Friday 8:00 a.m. to 5:00 p.m.) unless they are medically necessary, have a doctor's prescription, and can not be rescheduled. They now require one weeks notice instead of 24 hours notice as it has been.

I can not transport him because I have no way to transport his power chair or his motorized scooter in my car. We are unsure what we are going to do for weekend activities as his chair and scooter both have very limited range to activities and shopping. He has tried to contact his case manager but she can only discuss medically necessary services with him during the government shutdown do to restrictions on their government funding. The only local cab company that has a handicapped lift vehicle charges a $20.00 start up fee and then $4.00 per mile so that is not affordable option as it would be a minimum of $48.00 round trip just to go somewhere.

Wednesday: Today is National Unity day for anti-bulling and are asked to wear orange in observation of anti-bulling and so we are all dressed some orange today!

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Things need to get done so do what need to and try to have fun doing it.


Larry, between the shutdown and the policy change, my heart goes out to you all. I agree with Denise about your resilience -- and I love the ways you find balance in your life with everything that you're dealing with. I am so glad you had a day of rest and that you and your mom had a chance to sleep in.


Hi Larry--My mouth dropped when I read about the application process getting waylaid because of the government shutdown. That is awful!\r\n\r\nAnd, then the transport van's policy change. UGH! I hope they will work with your friend on this. \r\n\r\nI so admire your resilience, Larry. You just keep going. You really an asset to all who know you, including us. \r\n\r\nThanks so much for keeping us in the loop.


Larry, I really like your activities, especially the store shopping :) I am sorry to hear about the transportation issues for your friend. I don't think people here in my town appreciate the local bus that is equipped for wheel/power chairs! I am hoping the government gets back on track so you can finish that much needed paperwork process! Best Wishes :)