Walking into a new and brighter life.

Walking into a new and brighter life.

The healthy me

The healthy me

Finding your way around

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This I know.................

This I know.................

Saturday, September 17, 2011

Maybe I can make a difference

So, there is very little lately that I can be proud of, or feel good about myself.  That terrible man/boy at the store really threw me for a loop and I know better than to let idiots like that get under my skin.  It just was so In My Face... I was unprepared and shocked.

When I last had my Pulmonologist's appointment he talked again about transplant, but later down the road.  I am not sure if I spoke very much about that appointment.  I talked to him about that doctor from Florida that was contacting me wanting me to come to Florida for stem cells implants.  He looked him up and said even though he has no complaints about him and his work, there also is not a trail to follow on his procedures.  It seemed a red flag to him that he is not affiliated with a hospital and does the treatments from him office.  He also said that this procedure is not FDA approved in the U.S. yet and therefore none of it is covered by insurance companies.  So... He said for me to hang in there, remain as healthy as possible and to keep losing weight and exercising.  That just doing those things can help my breathing greatly.

I explained to him that my problem has been that I begin to get into a routine of exercise and then have some sort of set back and I just can't seem to get back to where I was.  He said that is not unusual but for me to just keep doing whatever I can.

I had been reading in all my online COPD groups that having a Pulmonary Rehab Class has helped so many build up strength in their lungs.  I asked him about one and he told me that for some time our town does not have one, due to lack of funding.

One of these classes is needed for transplant and LVRS.  So, I told him I had found all the classes on YouTube but I would need to have a certificate showing I completed the course.  His nurse gave me a phone number to the Respiratory Therapy Department at the hospital and told me to call and ask them if they would perhaps be interested in teaching a class.

I had put the number in a pocket in my purse and forgot about it until a few days ago.  I pulled it out and called the hospital.  I spoke first to a technician and then she put me on speaker phone with the head of the department.  He said he would be very willing to help, but due to lack of funds the hospital couldn't do it at this time.  He gave me the name of a Professor at the College here and I called him.  I left him a message explaining that I had severe Copd and in order to have surgery or transplant I would need to have this class.  I explained that my Pulmonologist is willing to help in some way, that the head of the Respiratory department at the hospital said he also would be willing to help.

Yesterday I got a call back from him.  He was very pleased to talk to me.  He said each year his students spend quite a bit of time on Copd and the treatment of it.  If I would be willing to be their patient and let them interview me and give me the rehab class he would appreciate it and find a way to get it accredited with the transplant center.  He said that if this works out well they may be able to work through the hospital and open it up to the public which would help so many.

He said he would make some calls and get back to me next week.  I am very proud of myself.  I have wanted to make a difference somehow.  I knew I had in me... the knowledge of this ugly disease to make  difference.  He said that by me being there to have his students ask questions of and get answers from an actual Copd patient would be invaluable.  That learning about a disease is one thing, but seeing the results would be most helpful.

Besides that I haven't done much.  My Weight Watchers diet this week will be hit or miss if I gain or lose.  I am taking full responsibility for me... but having Bill bring home pizza and chips is just wrong.  I told him we need to go back to that time where if he wanted those things to go eat it, or bring it home and keep it out of plain site, and then not keep offering me it.

I hope I can get started with just a pound or two so I can use that to get momentum.
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