Deja Vu

[Dman73]

I still hate dialysis as I did when I was first put on the machine 37 years ago five months after graduating from college. I didn't think I would get through the first year let alone the second and after about 5 years I thought I might survive this thing and started thinking about how could I be the best dialysis patient I could be. I worked on controlling fluids, diet and attitude and tried to keep physically fit by walking, swimming and lifting light weights. It was difficult to do with a hematocrit of 18 as epo had not yet been invented.They gave us DEPO-Testosterone shots to build our blood cells and it had some unpleasant side effects (facial hair, acne, deepening of voice and aggressive tendencies). I wanted to get on the transplant list but my nephrologhist convinced me to wait because our center's success rate was not too good. Over time I had my share of problems such as bilateral hip replacements due to parathyroid going autonomous, hearing loss due to Alports syndrome and carpal tunnel.
After 8 years of dialysis I decided it was time to learn something that would earn more that $256 a month I was getting from Social Security and possibly get me a secondary insurance. My vocational counselor discovered a program focusing on training the handicapped how to program computers using COBOL and place the graduates with local businesses. After 6 months training I got a full time job that ended up being a career that lasted 22 years.
After 14 years of dialysis I received a call at 11pm and drove 160 miles to get a kidney transplant. After working for one day it went to sleep with ATN and spent a month in the hospital with a variety of complications. Just when they were starting to prepare me that the kidney might have to be removed it started working again. A few days later I wiped the dust off my cars windshield and drove home.
Having a working kidney and a good job life was nice as I only had to take a few pills in the morning, have some labs drawn monthly and eventually see my transplant nephrologist every 3 months. You could drink all the ice cold drinks that you want and eat just about anything. I still could not get myself to eat a banana however. After being off dialysis six years I decided to pursue my life long dream of learning to fly. After getting 10 hours in ultralights I thought I might try to pass a FAA physical and get my private pilot license. I eventually got my second class medical certificate, private pilot, instrument and commercial pilot rating. After passing my commercial pilot flight test (I was 14 years out on my kidney transplant) I parked the plane, tied it down and a few days later was informed by the medical center that my creatinine was elevated. As soon as achieving my lifelong dream I knew that it all has ended.
After having a new fistula created I was back on dialysis. I still had my job and felt lucky to have had the chance to live a little. Six months after starting dialysis I was back on the transplant list. Five years later my company decided to relocate and I decided not to make the move and start a second career of trading stocks from home while receiving disability. I have been trading part time since 1990 with some of my co-workers at work and we all shared the dream of doing it full time. I made just about all the mistakes that a trader can make and finally learned how to avoid loosing and win a little sometime even with the manipulation of the Plunger Team.
After being on the transplant list almost 8 years I made the decision to change my status to hold. The reason being is that the new health bill did not cover kidney transplant drug after the 3 year period and you would loose your disability status after one year. With the economy and job market the way it is there is little chance finding a job with good health benefits especially when you are 60 years old and have a history of health problems. I have been told by my family that it is a mistake but I have read horror stories of people loosing their transplants after three years and returning to dialysis. All in all dialysis is not that bad and all you have to do is look at is what Shad Ireland has accomplished. One day I hope that they change the law as they realize that paying for transplant drugs is less expensive and offers a better opportunity for people to return to fully productive lives

[monrein]

Great introduction, great attitude and terrific accomplishments Dman.  I am however deeply sorry and in fact saddened by the fact that transplant drugs aren't covered after the three year mark and am of course completely baffled by this catch 22 in the quest of U.S. patients to try to return to more productive and healthy lives if they want to go for a transplant.
 

[peleroja]

First of all, welcome to the group.  Secondly, WOW, you are the poster child for positive attitude while chronically ill.  I look forward to more posts from you.  Hang in there, you are doing just great!

[totosidney]

I enjoyed your story. Thanks. (Sorry for being dense, but what is a Plunger Team?)
best wishes, sid

[galvo]

G'Day Dman, and A great story, well told.

[Quickfeet]

 

[Jean]

  Dman, very interesting life you have lived. I am sure you will like it here. Not that you sound like you need a lot of info, but, life's little changes can just make you long for more, LOL

[RichardMEL]

Wow Dman - what a story! I was riveted to your story. Thank you for sharing.

I love that you worked so hard to keep yourself in shape, had that transplant eventually and it worked for so long and allowed you to get your dream of flying - even if only briefly (that totally SUCKS man!).

I admire and understand your hold decision - it makes sense in these uncertain times. I am not sure I would have that strength to make that sort of decision knowing that meant X years more time on that damn machine - but you clearly have a lot of strength and willingless to look at the longer term picture - and that is an overall positive attiutde I think.

I think it will be great to have you on our forums!

 

RichardMEL, Moderator

[Sax-O-Trix]

 

[Bajanne]

Welcome to our community!  On behalf of our late founder Epoman, I award you a A+ for a top-class intro!    I am very glad that you joined us (why did you wait so long!) as I am sure that you have so much to offer, and hopefully we have something to offer you too.  This is a great place for information, support and even fun.  You will soon find out that is a really a genuine family    So please keep posting.  Let us know how you are doing.





Bajanne, Moderator

[looneytunes]

Hi Dman and welcome!  Your chipper attitude and willingness to share are wonderful.  What a great intro, I'm looking forward to seeing more of your posts.   

[Mimi]

WOW DMan!! What a wonderful life!!!  You met every thing head on and conquered it all.
Welcome to IHD, it is our pleasure.

Mimi

[MooseMom]

I wish I had your resilience.

[aharris2]

...After being on the transplant list almost 8 years I made the decision to change my status to hold. The reason being is that the new health bill did not cover kidney transplant drug after the 3 year period and you would loose your disability status after one year. With the economy and job market the way it is there is little chance finding a job with good health benefits especially when you are 60 years old and have a history of health problems. I have been told by my family that it is a mistake but I have read horror stories of people loosing their transplants after three years and returning to dialysis. All in all dialysis is not that bad and all you have to do is look at is what Shad Ireland has accomplished. One day I hope that they change the law as they realize that paying for transplant drugs is less expensive and offers a better opportunity for people to return to fully productive lives

Hi Dman and welcome to IHD. Great intro!

The last part is interesting. I am with you. It boggles the mind that transplant maintenance meds would not be supplied free of charge to anyone with a transplant. If that individual is LUCKY ENOUGH to get a job with bennies, let the insurance company reimburse the govt for the meds.

You seem to be a very practical person. Will you be returning to active status on the transplant list in a couple of years when, 3 years later, you will be eligible to receive Social Security and Medicare based on age?

Like I said, Welcome to the neighborhood. It seems that you have lived an interesting life in spite of Kidney failure. I am looking forward to reading your stories.

Alene