Me, My Mother and the National Kidney Walk 2008

Discussion in 'Off Topic Chat' started by ToddB, Feb 15, 2008.

  1. ToddB

    ToddB TPF Noob!

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    I know I'm still relatively new to this site, and if this is taboo, let me know and I'll delete the thread. But this is very important to me and I would appreciate it if you would read and please try to help.

    As some of you might know, my Mother (known as "Nana" to her grandchildren) is suffering from kidney disease. She has been living with kidney failure for several years now (currently she has less than 17% kidney function). It is a silent, but I assure you, a very deadly disease. I watch the pain my mother goes through, which is both physical and emotional. She has been lucky so far, avoiding dialysis, in hope of receiving a kidney transplant. I was tested to be a potential donor, along with several others, but unfortunately, she suffers from an extremely rare condition that doesn't allow for a 'simple transplant'. In basic terms, her body will reject any kidney thanks to an extremely high level of anti-bodies in her blood. This means a transplant is close to impossible without a lot more research and a lot more luck. In the very near future, she will begin dialysis. When the time comes, if she does not have dialysis, she will not live. It is life support, plain and simple.


    Kidney Disease is widespread; we need more research to better the lives of those living on dialysis and those waiting for a transplant.



    My Personal Fund Raising Web Page


    To illustrate exactly how serious of a disease this is, my Mother's close friend Susie, who she met through a kidney disease website just passed away yesterday from this disease. Susie (who was known as GoofyNina online), was only 40 years old. She had been on dialysis for only a couple of years when things took a turn for the worst on Wednesday (Feb 13th). By 7pm last night, GoofyNina lost her battle. That is only 24 hours from things turning bad to her loosing her battle.


    In honor of my mother ("Nana") and in memory of her friend Susie ("GoofyNina"), my sister has just formed a "walk-a-thon" team. On Saturday, March 29th this team will walk in Raleigh in the Triangle Kidney Walk 2008. Here is why I emailed everyone today… We need your help. The team's goal is to raise as much money as possible in honor of my Mother and in memory of GoofyNina. You can help in two ways. Follow the link to make a donation straight on our Team's site, or if you would like to join our team, walk with us on March 29, help us get to our goal!


    Please share this with anyone you think might want to help. Thank you!


    Also… be sure to follow the link below to register and/or donate. Every dollar helps.

    My Personal Fund Raising Web Page

    Thank you for your time

    ToddB
     
  2. ToddB

    ToddB TPF Noob!

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  3. ToddB

    ToddB TPF Noob!

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  4. jstuedle

    jstuedle No longer a newbie, moving up!

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    Hi ToddB. I too have ESRD and have had 2 transplants. The first when I was just 36 in April of 92. The donor for the first was cadaver, a 6 Y.O. boy. I was on dialysis for almost 18 months prior. The second donor was our 27 Y.O. son, in Nov. of 06. We are both doing as well as can be expected, but I still have issues, as transplantation is a treatment, not a cure. Let your mother know a prayer will be said for her often in our home. I understand what she goes through each day, and I know it's not pleasant. We wish only the best for you both.
     
  5. ToddB

    ToddB TPF Noob!

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    Thank you so much John. You're right, transplant is not a long term cure. You know as well as anybody that the transplant doesn't last forever. Many recipients end up by having multiple transplants. And as you can attest Dialysis is really just life support. It is there to either get you through until a donor can be found, or until your body just can't take it anymore. Someday, science will discover a way to make dialysis easier on the body and transplants last longer.

    One other pet peeve of mine is that Medicaid/ Medicare only covers the cost of anti-rejection drugs for 3 years post surgery. That is an outrage. You *NEED* the meds to keep you body from tossing the organ and the insurance company only covers you for 3 years??!!??!!??!! There is currently a bill that has been floating around Washington to get that changed. I urge everyone here to contact their Congressmen and Representives to find out what their position is on this and get them to change this law.

    Ok, so that turned into a little bit of a rant. Sorry about that.

    John, thank you for praying for my Mom. Every prayer helps.
     
  6. Corry

    Corry Flirtacious and Bodacious Supporting Member

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    Only for three years!?

    Where is the logic behind THAT!???
     
  7. jstuedle

    jstuedle No longer a newbie, moving up!

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    There is no logic to it. Luckily I have decent insurance that covers it after Medicare quits. And Medicare only pays 80% after the deductible the 1st 3 years. At a couple thousand dollars a month for meds, that 20% adds up. But like I said, my insurance is decent. Most transplant recipients don't have the coverage I have, so the meds add up real quick. I don't know if there is a real solution to the problem. The meds get better all the time, but that just means the pharm companies spend mega bucks for research. It has to be profitable, or they won't invest in new and better drugs. If the feds get involved in it any more than they are, there will be less or no incentive for them to continue research. Think of the post office running the health care system. (no disrespect to the postal workers intended) So what do we do? I don't have the answer. All I know is, if I had gotten sick in the 1970's instead of the 1990's, I would not be writing this now. End Stage Renal disease was almost 100% fatal in the late 60's and early 70's. Now, if you are fortunate enough to get a transplant and survive the first year, most of us survive 15 or more years. The one year transplant success rate at the hospital I was transplanted at is in the high 90% range. The 10 year rate is in the high 80% range.
    Another real expense is the constant monitoring and testing to make sure everything is working correctly. A 4-5 hour clinic visit with blood work - stat, physical, med adjustment, and all the workup that goes along with it, is billed at almost $300.00. Medicare pays less than $40.00. If the hospital and doctors accept Medicare assignment then they work at a substantial loss. The way Medicare balances it's budget is to reduce compensation each year. Many good hospitals and doctors are refusing to be a part of that system. It's getting to the point a second tear health system is evolving for the care of patients on Medicare.

    Ok, I'll stop my rant, sorry I didn't realize until just now how I've gone off tangent. Nuff said, OI'm done.
     
  8. ToddB

    ToddB TPF Noob!

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    John,

    No apology needed. I feel it is necessary for the public to realize where the problems are in the current system. And for them to know that this isn't for just kidney transplants. The drug coverage rules apply to lung, heart, liver, all organ transplants.

    Thank you for sharing your first hand experience with how the system works.

    ToddB
     
  9. ToddB

    ToddB TPF Noob!

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    My team, which is made up of my family and friends have already raised over $4000 in just over a week for the National Kidney Foundation! That is pretty spectacular. We are currently the top team and have three of the top 5 fundraisers!!!! We are so excited and can't wait to see what happens over the next 5 or 6 weeks!!!!!

    Thanks again!!!!
     
  10. ToddB

    ToddB TPF Noob!

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    Wow, I really needed to do this update a long time ago. It’s hard to believe that it has been almost 2 months since the Triangle Kidney Walk. Well, is the story of how that wonderful day turned out.

    When we woke up that Saturday morning the weather was looking gloomy. It was chilly and breezy but not raining. That last bit would change drastically later. But no crummy weather was going to keep us from doing this walk. So off to the site we went. The closer we got, the heavier the clouds looked. No big deal, surely the weather would hold off and let us get this walk in. Right?

    So we get to the site and find out that our team has grown. Initially we had my family, some friends of the family and my manager and his wife. Well my manager’s Mom and sister in law and her son decided to join us also!!! That was very cool. These people don’t know us from Adam and they came out to walk for this great cause.

    [​IMG]

    Our team consisted of My Family (Rebecca, Eliza, Emma and myself), my parents (Elizabeth (Nana) and Barry), my brother’s family (Adam, Amanda, AJ, Jack and Carrie Ann and her parents, Thomas and Karen), my sister’s family (Melissa, Zeke, Paxton and Jim and his daughters, Amber and Cassie), my baby sister (Beth, our team leader), long time friends of the family Ann and Gary Byerly, my manger and his family (Russell, Kristina, Linda, his sister in law and her son Daniel), and another long time friend of my Mom, Debra and her daughter Eleanor. That’s a lot of people!!! All of the girls had tiaras and purple boas on, in memory of Nana’s friend Nina who lost her battle with kidney disease on Valentine’s Day this year. Nana got the boys hats that said “Nana’s Boys” on them. They all wore them proudly.

    So we all gather and listen to the opening speeches by the organizers and sponsors. There are several hundred walkers. Not too bad for the first event. When they did the countdown to start the walk, the rains started!!!! Nothing like starting a 3 mile walk with very cold, light rain falling!!!! Surely it will stop soon, right?? Not a chance!!!! And none of use brought any rain gear!!!! But being the troopers that we are and the fact that we are walking for a very important cause, we trudge on. Our youngest daughter, Emma, wasn’t too keen on walking so she bundled up and rode in the wagon. Eliza and the older kids all RAN for the majority of the course!!! Oh, to be young and energetic again!!!! My Dad said he was going to go get his umbrella out of his car, that’s what he told us anyway!! Our team got spread out of course with some of the “professional” walkers basically sprinting the course. My brother decided that as soon as we saw someone else from our team walking back along the return portion, we would turn around and walk back with them! That’s probably cheating, but I think I’m over it. Not 2 minutes later, Russell and his group start approaching us so we turned around. By the time we got back to the RTP Center we were all soaked and the post walk festivities were moved inside. And as we walk up, there’s my Dad, dry and waving at us from the warm confines of the Center with my Mom. I think he was a smart man!!!!

    After some popcorn and refreshments they start the awards portion where they gave awards for the most members on a team, the dialysis with the most money raised, the top fundraising team and the top individual fundraiser. Well, I can tell you that Walking for Nana and Nina did alright in the awards department. We managed to raise over $7000 in just over 7 weeks to take the award for top team and I managed to raise over $3600 to claim the top individual prize. We even got a HUGE trophy for the team prize and I got a plaque for my office for the individual prize. As a whole, the first annual Triangle Kidney Walk raised $100,911 for the National Kidney Foundation of North Carolina to help provide services and support to those who are suffering from kidney disease.

    We are VERY proud of what we were able to accomplish. The whole thing was Beth’s idea. She organized the team following Nina passed away this year as a way to honor her. I’m not real sure how she found out about the walk, but I’m glad she did!

    We can’t wait until next years walk!! Hopefully it won’t be 42 degrees and rainy next year!!!!

    Here is the newsletter with the results from the walk. Including a photo of my Mom with her trophy.

    [​IMG]

    The local news channel, News 14 Carolina, interviewed my Mom and had the story on the news that afternoon and evening. Here is the link to the video. Unfortunately, they put a lot of the interview on the cutting room floor. When you see the girl in the wagon, that’s Emma!!!

    News 14 Story

    Thank you to all who made donations towards our cause and to all who supported us in prayer. It really means a lot to me!
     
  11. Corry

    Corry Flirtacious and Bodacious Supporting Member

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    That's awesome Todd! Thanks for sharing that with us!!!
     

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