When Julie M became my boss from hell I was very lucky to be able to retire from a job I truly enjoyed in Jan 2012 after completing our 20 plus year careers in Talahassef FL working for the Department of children and families, sold our house/belongings bought a Ram 3500 and DRV fiver and hit the road.

FSGS a rare kidney disease that was diagnosed 20+ years ago finally caught up with me when I had a routine annual primary care doc visit and was told my kidney function was down to 28 as measured by GFR, normal is 60 - 100.  The previous year the doc told me I should consult with a nephrologist, I had had the disease for 20 years with no impact on how I felt so I said thanks and just kept on going down the road.  The next year he told me I was in dangerous territiory and MUST SEE a nephrologist.

Well I made the appointment and I was in full blown kidney failure with a GFR of 12 and he was referring me for evaluation for a kidney transplant.  I asked him to do everything he could do to keep me off of dialysis.  It is common for kidney patients to feel sick with nausea, fluid retention shortness of breath etc begin dialysis when their GFR drops to 15 and their kidneys quit producing urine.  I still felt what I thought was good for an overweight 64 year old male and had none of the physical symptoms of kidney failure.  This forced me to accept my kidney disease and do something about it, threw the salt shaker away, quit drinking 2-3 litres of soda every day and lose some weight(which I did not do).  We bought and spent a couple of months remodeling a house in tornado alley in OK, moved to the house to be close to friends and relatives in case things took a turn for the worst(I expected to be on dialysis by the end of the year, (after living in FL for over 20 years the last place I thought we would have a home base was Ok but it is great to be close to family and friends in these trying times) else anyone would move to OK is beyond me), hoped for the best and sold the RV and truck to a very nice couple from TN.

I went to Integris Medical Center in Oklahoma City and began the process of being evaluated to get on the transplant list in November 2014 .  This is when I found that the expected wait time for a cadaver kidney for O+ blood type was 3+ years in OK and up to 10 years in CA. Prior to starting the listing process  I assumed I could probably find a donor kidney and be back on the road in a couple of months. I decided  to be very proactive regarding my potential transplant, this after 8 months of effort on my part, support from my wive and a lot of traveling to several states ultimately resulted in being listed at 3 additional transplant centers Methodist in Des Moine Iowa,  St Lukes in Kansas City and the Ft Worth Transplant Center by September this year.  Several people wanted to donate a live kidney but could not for various reasons.

I got the call for a transplant at 7:15AM November 17, 2015 from Plaza Medical Ft Worth TX 2 1/2 months after being listed, they transplant most people on the transplant list within a year and are very aggressive and very good.  Our bags were already packed and we were on our way to TX within an hour.  They took me to surgery at 7:15PM and after 4.5 hours of surgery I had a new 21 year old kidney that was a 100% match.  The doc told me a twin would not have been a better match and that if I took care of it the kidney would last me for my lifetime.

I was released from the hospital Sunday night at 10 PM and will be spending the next 4 - 6 weeks in a suite in FT Worth.  One week post transplant I feel great, off the pain meds. I expect to spend the next year taking care of my new kid, lose some weight and god willing and the creek don't rise buy another

small used class a and toad, and resume traveling with my beautiful wife and new kid at least part time for as long as we can.  Special thanks to my daughter Tanya and her husband Justin for supporting us during this trying time and friends, family and evenpeople i never met that were sayng prayers for me. Prior to the transplant I had not spent a single night in a hospital.

Hope to meet some more of you escapees when we return to the road.

 

If every thing continues going well I intend to play it forward and do everything I can to share my transplant experience with other kidney transplant candidates.  So if you know anyone in this situation please give them my email address and I wll be glad to share my experience 

 If you know anyone who needs a kidney tell them to contact me at gmail so I can tell them how/where to get a kidney ASAP.  OKKIDNEYDONER at gmail 

 

Dennis(kidney recipent and Stella

Paying it forward by helping kidney patients get transplanted ASAP

The road goes on forever and the party never ends

-- Edited by frayfl on Thursday 26th of November 2015 12:36:23 PM



-- Edited by frayfl on Sunday 29th of November 2015 10:07:45 AM

__________________

 Dennis(kidney recipent and Stella

 OKKIDNEYDONER at gmail 

Paying it forward by helping kidney patients get transplanted ASAP

The road goes on forever and the party never ends

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  • 2 MONTHS POST TRANSPLANT

    My wife rented a suite in Fort Worth where we stayed for a month after discharged from hospital. We are now back in OK and and I am now 60 days post transploant, no complications, My creatnin has dropped from 7.5 pre transplant to 1.6. labs are good excepl low phosphrous and magnesium which the doc tells me are due to the prograff. They have began to reduce the prograff levels.  Clinic visits now down to every 2 weeks for a month then if everything stays stable the visits will drop to 1 per month and I will transation back to my nephrologist for ongoing care. 

    Again my advice to anyone who needs a transplant is to be your own advocate and evaluate the transplant centers before you attempt to geo on the list.  Do your own research and you will be surprised how much the average wait time varies between transplant centers.  Fort Worth has one of the best transplant rates with the shortest wait time in the country.  While in clinic in Fort Worth we spoke with many recent transplant reciepants and no one we spoke to had watied for more than a couple of months after listing at Fort Worth and many measured their wait time in weeks father than months.  The program at Fort Worth isw small but fast.  Please contact me if you would like to know about being an advocate for your self or want to know anything about my experience in Fort Worth.

    Dennis

    Email OKKIDNEYDONER at gmail

  • Congratulations first of all!!!!!!!!!!!!!!!!!  You've been blessed beyond all measure.  Secondly I admire your proactive approach to the problem of ESRD, and thirdly, j

    ust saying....some people because they haven't been tied to a dialysis machine and the awful life it provides so many of us for years while waiting for that kidney tend to take it for granted.  They aren't religious about taking their meds, they do and eat risky things that can cause massive infections while on the immune suppressants, etc.  PLEASE, don't be one of those people.  To have gotten a kidney so quickly, and a perfect match is rare, rare, rare!  Please treasure and value that gift with all you've got.  And, most of all, enjoy your new life!!!!!!!!!!

  • You demonstrate the value of being proactive rather than sitting and waiting to move up the list..  At 78 I was told that Naproxen (prescibed for arthritis pain) had destroyed my kidneys and would need a transplant.  I also did not want to go dialysis.  Instead, printed and distributed flyers and biz cards, wrote local newspapers and got into print and also did the same with TV stations and was featured on their medical stories.   A 33 yr old stranger appeared and passed all the tests and I had her kidney at 79 and doing great.  

  • Best wishes with your new kidney and advocating. I am amazed at your short wait for a transplant! Most people are not as fortunate. I'm sure you will do everything you can to keep the kidney for many years. 

  • Thank you so much for sharing and thus encouraging others. May you bless many in your efforts and find yourself doubly blessed as a result.


    Warm regards,

    Bobbiejo 

  • Congratulations on getting a quick transplant Dennis.  You used excellent strategy in making that happen.  Best of luck to you in your recovery and in enjoying life.

  • Wow..., god helps every one like this, it's great insipairation for those living with a hope of new life !

    Keep the up the spirit !
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