Five years I came down with chronic inflammatory demyelinating polyneuropathy (CIDP). CIDP is closely related to Guillain-BarrÃ© syndrome and it is considered the chronic counterpart of that acute disease. CIDP is also very simialr to MS where the the CIDP attacks my musles in my body and can become very debilitating. In my case it became as chronic as it could get. We did not catch it in time and we have only been able to slow down the progression of the disease. I started off by using a cane and getting infusions of IV goblin (aka IVIG), which is basically increasing my immune system. After two years I started getting worse and ended up in a power wheelchair and started Plasmapharesis three times a week for a little over two years. Now my arms and legs have gotten so week that I can only walk about 100-200 feet and not lift anything over 10-20 pounds. All depending on what kind of day I am having.
Then last (March 10, 2013) year things turned for the worse. I already had my feet swollen, but now the fluid moved into my heart and lungs. I was out and had respiratory failure; it hurt to take every breath. I was rushed to the hospital and spent a few days in ICU and eventually moved to a regular floor. I was diagnosed with congestive heart failure. What else can go wrong? After a little over a week in the hospital my wife and three children came to pick me up in my 1994 Dodge Caravan that carries my power chair that broke down on our 48 mile trip home. We do not have the money to fix my handicap vehicle, but we applied for funding for power chair alterations and alterations for me to drive the vehicle from my wheelchair. They informed us that we need to have a newer minivan that has less than 12,000 miles. We do not have the money for any type of vehicle.
With the funds I have received from severals sources work has started on repairing my 1994 Dodge Caravan. After spending over $3000 we believe that the van will not die while driving it, but it still needs a little more work on the power assisted brakes,the ramp and the lowering system needs some work to make it totally road worthy. I have now found out that these last few repairs and other maintance issues from having the vehicle setting for over a year is going to be at least another $3000 to keep the vehicle in good health for the Immediate future.
I was just released from the hospital after spending from February 25, 2014 to April 2, 2014. I had problems with my heart and breathing. I went into respiratory failure and stoped breathing for a while and I am still recovering from this last hospital stay and my memory from this hospital stay are sketchy at best. I am finding out everything happened a little at a time. Everyone believes after getting out of ICU, I was back to normal because apparently I was talking and moving around. The only thing I remember from this visit is last week in the hospital.
I know that my health is bad and that I will be lucky to live more than two- three years, but there is a young child (13) that lives down the street and is in a wheelchair. I see his parents carrying him to the SUV they have and dismantling his power chair to stick it in the back of the SUV. This would be the perfect gift to him has he comes of age to drive after I am no longer. This will be used to the wheels fall off like the van I was given for the price of new tires by a person's family that passed away. Pass it forward!
DonationsSee top donations
- Cay Pilla
- Louis Hogan
- Cay Pilla
- Shelly and Rob Friederich
- Kenneth Krawczyk
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more