Goodbye ESRD

[cariad]

I received a call about an hour ago from the research RN. She managed to corral my surgeon in between operations and get him to read my biopsy.

It came back with no signs of rejection. I am off Prograf and the 3 other drugs I take. I still have to finish the course of antibiotic that I started two days ago, but then I will no longer have to take meds every day. It has been almost exactly thirty-five years. I am so delighted that I wanted to start a fresh thread to celebrate. My one year transplant anniversary is tomorrow. We are going out to dinner with a friend from England tonight. I am overwhelmed. And very grateful for everyone on this site.

Excuse me a moment while I do a little victory dance. 

Kidney Failure, you picked the wrong child to tangle with all those years ago. I win.

[willowtreewren]

 

This is Soooooooo much better than the other post I read from you earlier today.

 

Wonderful news. And revel in this new life!

ESRD....take that....

Aleta

[Marsh]

Yeah!!   

[galvo]

Bloody ripper.

[MooseMom]

Oh, that's just wonderful!  Thirty five years is such a long time.  I've had CKD for 20 years now, so I have an idea of what this disease takes out of you.  But now I guess we really do have a cure for ESRD!

I have a couple of questions for you, but I'll put them on your other thread because this is a CELEBRATION thread!!!

I'm tempted to say that you are lucky, but I don't think luck had anything to do with it.  Your success is the result of a lot of hard work from a lot of people, including you and your husband, so BRAVO!

[RightSide]

That's just amazing--and wonderful.

You are making history.  You truly have beaten kidney failure.

[jbeany]

 

[YLGuy]

        

[carol1987]

 
Wonderful!!!!

[boswife]

             

[Chris]

That's great Cariad!
So do you still take other medications such as aspirin/ bp/ cholesterol/ as example to help keep kidney healthy and flowing well?

[okarol]

  Lovely post - I am so pleased - you took a chance with this protocol - it took courage and faith - best wishes for many, many good years!!  Happy dance!!! 

[Lillupie]

So, does this mean you are cured?

[Zach]

Persistence pays off!
Excellent!
 

[rsudock]

Cheers!    Awesome!!!

[monrein]

Best news ever!   

[chook]

Hurray for you, Cariad. That is a remarkable achievement!

[RichardMEL]

WOW!! I nearly fell off my chair reading this!!!! Amazing!!!

no meds every day?!! omg!!!!


YAY!!!!!!!!!!!!!!!!!

[MakeMyDay]

Simply amazing! 

I hope this new method is used all over the world soon. It will help millions of us. Terrific news.

Good for you.

[Jean]

Awesome Cariad!!!! Good Job!!!   

[cariad]

IHD members, thank you all. It means so much to me that all of you are willing to share in my joy.

To answer the questions: I am still taking over the counter Strontium and calcium/vitD/mag capsules to build bone mass. Once a month, I take Boniva for the same reason. My blood pressure tends to run a bit low, so no meds for that. I was supposed to have a fasting lipid panel drawn, but when they told me to eat a light breakfast before my biopsy, I somehow did not psychically understand that this meant "don't eat anything, we need to take fasting levels". So, I will get that panel drawn next week, but my cholesterol was within the normal range even without fasting, so I don't imagine there will be a problem. I have never taken cholesterol meds before.

Am I cured? Well, I have no underlying disease to cure, so I would say, yes, I am cured of end-stage renal failure. I think the main point to keep in mind is that I now have my husband's immune system as well as my own, with 100% chimerism that has lasted a full year, so in theory I have the same chance of losing my kidney function as any other person walking around with only one kidney, but no history of renal failure. I think Gwyn and I now have an equal chance of losing our kidney function, and it won't be from rejection, it will be from aging and just normal, unavoidable wear and tear. I should know after the first few blood draws if there is going to be a problem with my labs going wonky. I know the surgeon would likely shudder if he thought I was telling people I was cured, but that is how it looks and feels to me! He told me repeatedly before I enrolled in the trial "I don't want you to think that this is necessarily the answer" and I respect that and understand that we are in such early days even still, but until my labs show otherwise, I am cured!!!!

For our one year anniversary we went out to my favorite restaurant. The Scotsman was there, and he had been picking on Milwaukee a fair bit up until then. He had just come from DC where an incredibly wealthy company had hosted them at a grand gala with posh dinner and all. He said that the organic, grass fed steak that he had at this restaurant was far superior to the filet mignon that he had in DC. Our waiter was a South African with a masters in sustainable energy, and a hardcore rugby and cricket fan, so the boys had a blast. My older son talked alternative energy with him, telling him about his science fair project that is coming up. They are testing Aidan's radio/torch that has either a hand crank or a solar panel to charge up the internal battery. Aidan predicts that the solar panel will provide more energy from 5 minutes of charging than the hand crank. The server immediately asked how big the panel was, and gently broke it to him that he believed the hand crank would prevail. My younger son ran up and gave him a hug at the end of the night. Excuse me, but Liot does not hug just anyone - this man obviously charmed his way into my children's lives. We had an amazing wine from the Barossa Valley, and I had gnocchi with a tomato/kale sauce. I joked with the waiter that the chef must give me his kale secret (I've never had kale so delicious, and kale is a CSA staple) and our waiter actually retrieved that information for me! He also had the chef make special grilled cheese sandwiches for the kids. My younger son and I split their creme brulee for dessert, while my older boy had chocolate brownie with banana ice cream, and the two men had chocolate mousse.

Our support person rang up Gwyn during dinner, so we could thank him once again. It was truly just a perfect evening.

Once again, I so appreciate you all taking the time to reply. Thank you, thank you, thank you!!! 

[Chris]

How often due you have to do labs now cariad?

[cariad]

How often due you have to do labs now cariad?

Back on twice a week. The big draws, the chimerism draws, are more frequent for a while, too. We had one right before the biopsy, we'll have one in a month, and we'll have one in 3 months.

Twice a week is fine with me - I no longer have to worry about timing it with Prograf. I think that will be reduced again in a few months.

Oooh, but Chris, I have news about one of your doctors. You may already know, but I'll shoot you a quick email to be sure....

[carol1987]

I am amazed and so happy for you!!  A toast to your continued good health.. 

[Chris]

Every two weeks is well still bad compared to once a month...lol I want a break from twice a week labs, well my vein and right arm does.
Thanks for the email.