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Post Info TOPIC: KIDNEY TRANSPLANT - RESUMING TRAVELS


RV-Dreams Community Member

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KIDNEY TRANSPLANT - RESUMING TRAVELS


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

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RV-Dreams Family Member

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RE: KIDNEY TRANSPLANT


That's great to hear it worked for you. Years ago my Mother In Law had to had three transplants done before one took. They would keep rejecting. I think it was more to do with our medical system up here. She was sure glad to get off dialysis.

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RV-Dreams Family Member

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Good news, Dennis!!!!  And yes, you will need to take care of yourself.  We had a young lady at church that had a transplant from a family member.  However, she chose to ignore her doctor's warnings and go ahead and have a second child.  After that, she was in need of another transplant.  She was fortunate enough that there was a young lady in our congregation that was a match and received a new kidney from her.  Last I heard, she's not having any more issues with the kidney.

Oh, and  you are wrong about Oklahoma.  I lived about all but 6 of my 69 years in Oklahoma and there is a lot there to appreciate.  Want scenery?  Try any number of the state parks, Mount Scott down by Lawton, and do the Talimena Drive next year during the Fall.  Turner Falls, Red Rock Canyon State Park, and Natural Falls State Park are all nice places to visit.  In Oklahoma City alone, there are a number of great museums, some of which are just a mile or two from each other on the NE side of the city.  If you like old firearms and old military tanks, artillery, etc., check out the 45th Infantry Museum up near NE 36th and Martin Luther King Blvd.

We are planning on a trip back to Oklahoma City next month to see family, and Jo wants to get some work done on both of her embroidery machines, so we could be there any time from 2 to 4 weeks.

Terry



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RV-Dreams Family Member

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Congrats on the successful transplant. Thanks for sharing your inspiring story.
Hope to see ya on the road!

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RV-Dreams Community Member

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Posts: 16
Date:
RE: KIDNEY TRANSPLANT - RESUMING TRAVELS


Terry,

Its nice to hear from a fellow okie.Sorry what I said about OK in my original post was inappropriate it was the transplant drugs talking.

You probably don't remember but we spoke several times via phone regarding 5ers and trucks. Your input was a big factor on why we chose our DRV.

I was raised and lived in OK for 37 years before moving to FL in 1988.

 

While we were FT we used OKC as our home base for doctors etc

 

I was revising my post to more correctly reflect my view of the OKC metro area when you posted. OKC is much better now than when I left and since I've been back appears to continue to improve.

 

And you are right I have visited many of the places you mentioned and many of them more than once.

 

OKC has a lot to offer has changed a lot and is much nicer than when we left over 20 years ago.

 

When/if we get to resume our travels we will keep our house in Moore as a home base and it will probably be the last home we ever buy. We love to travel, OK will always be 'home'.

 

My daughter and son and law were both raised in FL attended FSU moved to Bethany a few miles from where I grew up and have no desire to return to FL. My son in law is a great guy but still cheers for FSU rather than OSU, its probably a lost cause but I am working on converting him to an OU or OSU fan. His mom and dad have come to OK several times and have nothing but nice things to say about OK.

 

Now from my soap box:

 

OK is not the fastest place to get a kidney transplant even if you think you have a compatible live doner. The decision to where to first get listed is the most important decision a kidney patient seeking a transplant can make. Many doners get to list at only one transplant center due to insurance/medicare rules. I was fortunate enough to be listed at 4 different locations 2 of which were within driving distance from OKC. I was prepared to charter a plane to get to the other 2 if it would decrease the estimated 3-4 year wait time in OK. OK transplant centers have an average wait time of at least 3 years in an easy to match scenario. Even if you have a potential donor you may want to initialy list at an out of state transplant center to improve your odds. This is a decision the patient must make not the referring nephrologist who by the probably does not have the info/data you need to make the best decision for your self.

Now I'll get off my soap box before my anti rejection drugs side affects kick back in.

 

By the way you are stronger than me if you can endure a CO winter in an RV even if it is a DRV.

 

Maybe somday soon when I am out of isolation we can get togather when you are in OK if not our first destination when we resume our travels will be CO so hope our paths cross some where down the road.

 

It's nice to be home, but at the same time I can't wait to leave. I was born an OKIE and someday, hopefully a long time away I will die an OKIE.

 

Better stop typing time for another dose of drugs

 

 

 

 

 



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Like the song goes......"I'm proud to be an Okie from Muskogee".....hahaha.

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RV-Dreams Family Member

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Hey Dennis,

Congratulations on your surgery! So glad to hear you’re in recovery and doing well.

I am a donor to my baby brother (he’s 40 now). We are now 3.5 years post-transplant.

Unlike most folks with kidney disease, his non-functioning kidneys were actually killing him. Not only were they not working (he was on dialysis 3x per week for about a year), they were causing his blood pressure to regularly hang out in the 300-plus range. However, we were in a catch-22; his kidneys were causing his blood pressure issues, but UCSF (the transplant center) was reluctant to do the surgery until his blood pressure was under control. Talk about feeling helpless. Fortunately, we finally met a nephrologist who took one look at him and said, "do the transplant now or he won’t make it." In addition to his transplant, he had a double nephrectomy to remove the offending native kidneys. He was a pretty sick kiddo and it was touch and go for quite a while after his surgery but by the grace of God, a lot of prayer and expert medical care, he is doing great now. (He’s getting married next summer!)

However, as a donor, it was quite frankly the easiest medical procedure ever. I think I was out of the hospital in about two-three days. And I was up, about and back to normal a few days after that.

I am amazed how many people don’t know that most of us have two kidneys but we only need one. The extra is completely redundant and we can function just fine with out it. Because of this, I will preach it all day long: SHARE YOUR SPARE!

Anyhow, glad you’re on the mend.

If, in your travels, you find anyone on the donor side who has questions, feel free to send ‘em my way!

All the best!
Rachael


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RV-Dreams Family Member

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Congrats and good for you Dennis.....nice to hear you'll be back out and prayers that you stay well and enjoy your new chance at life!

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Great news; now some Happy RVing coming your way!

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