Invisible Illness

This article was also helpful to family and friends who couldn’t understand why I felt so poorly when I looked so good! I had an Invisible Illness, common for many chronic illnesses.

Invisible Illness: “But you look so good.”

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The Spoon Theory

No other resource was more helpful in assisting my friends and family to understand what it was like to be me while battling chronic kidney disease.

If you deal with chronic illness, please read this, then forward it to those closest to you. They will be enlightened and you will be relieved when they don’t pressure you as much. Many times my folks or kids would ask how my spoons were doing.

This is from the website But You Don’t Look Sick. You can also download this article in PDF format or get it translated in Spanish, Hebrew, and French.

Read it in English:

The Spoon Theory by Christine Miserandino

Perspective

First, thank you for ALL the amazing birthday wishes yesterday. I didn’t have time to go through them all, but I will today.

I’m not gonna lie…this week has been a challenge. Alotta pain. It started Sunday in the transplant site and got worse throughout the week. On Thursday the surgeon ordered an emergency ultrasound, which found significant fluid build-up near the new kidney.

An urgent procedure was scheduled to have a drain inserted to get that fluid out before it compromised the kidney by pushing it out of place. So yesterday afternoon they knocked me out and the interventional radiologist did the deed. The drain will stay in a few days until they feel it’s completed the process. This has already reduced the pain significantly., just learning to juggle the drain bag when I’m moving. Hopefully Monday they will have results from tests on the fluid.

Also, on Thursday I pulled the muscles in my right side. That has been excruciating pain. The doc says that’s common as they have to cut some muscles in the transplant surgery, which puts pressure on others muscles that aren’t used to being used for certain activities. It’s slowly healing and feels a little better today.

The good news is that the REALLY important stuff is all good – my new kidney function is solid, no signs of rejection, labs all look good. That’s what really matters, so I’m considering this a minor setback on the road to success!

I actually started to get whiney about having to do all this on my birthday, then my son Jeremy said, “How cool that they’re saving your kidney on your birthday!”

Perspective regained.

A Chain of Love or How to Save Five Lives

I am honored and humbled to be a part of an amazing chain of kidney donors and recipients. The story behind this chain is compelling and inspiring and I just have to share it with you. Would you please share it with your friends?

All about Amy’s Legacy

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Amy Ladenberger

This chain of life unfortunately begins with death. The lovely Amy Ladenberger was born with Cystic Fibrosis in Michigan and wasn’t expected to live for 10 years. Beating the odds, she not only lived but helped others with CF, talking many off the ledge, considering suicide. In her 20s Amy had to have a double lung transplant. Unfortunately, despite the transplant, Amy left this world 9 months later, leaving a huge void in her family’s life.

Breelynn Horn

11202964_1051308701580933_5861661768716442328_nOne family member who felt that void at her core was Breelynn Horn, Amy’s cousin. Bree, also in Michigan,  went to her doctor and wanted to help someone else to honor the memory of her cousin. Her doctor recommended she donate a kidney because of the incredible need. (22 people die each day while waiting for a transplant.) She agreed but was too young at the time. When she was 20, she passed all the tests and went in to the national database as an altruistic donor. And she waited.

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Enter Heather Kantor, at one time the literal poster child for kidney transplants in San Francisco. She was a firefighter for many years and when working the line of a wildfire, her kidneys failed due to exhaustion and dehydration. She received a kidney from her stepmother, but it only lasted five years. So she had to retire early – with incredible support from her fellow firefighters – moved in with her mom, and went on dialysis for three years. She was having difficulties finding a donor, until…

Glenn “Croc” Millar

12440476_10208003430144515_340892673853007749_oGlenn was on an adventure vacation in Iceland with a big group of friends. While Glenn didn’t know Heather, many of those friends did know her and talked about her plight often during the trip. Glenn had actually looked into donating a kidney a couple years earlier but it just didn’t work out.

When he returned home to the Bay Area from the trip, Glenn found Heather on Facebook and sent her a message that basically said: “Hi, you don’t know me but I’d like to give you a kidney. Why? Because many of the people I love, love you.”
Glenn passed all the tests, but he was not a match for Heather.

Fortunately they were placed in Paired Donor Exchange, a brilliant program that now allowed Glenn to donate to someone else so Heather could get the kidney she needed.

The national database matched Heather with Bree – in fact, they said it was like they were sisters, the match was that perfect. That transplant happened September 2015.

It wasn’t quite as easy to match Glenn. He didn’t match two other potential recipients. Then along came…

Mike Atkinson

892095_10153264191063016_8664511421288551338_oIn San Diego Mike was diagnosed January 2014 with IGA Nephropathy, an autoimmune disease that attacks the kidneys.  He was given the standard, brutal steroid therapy for 6 months, which only slowed the disease but didn’t reset it like his doctors hoped it would. So it came back with a vengeance and his nephrologist starting uttering the “T” word.

As his kidneys reached failure last spring, he felt what the process of dying was like, and didn’t like it. He started dialysis in March, which helped keep him alive but brought its own list of complications and issues.

Early June he was approved for the transplant list and was speedlisted because so many factors were perfect.

When Mike first brought up the need for a transplant to his friends and family, Emory, was the first to volunteer. In 2003 Mike’s son and Em’s boyfriend at the time deployed with the Marines to Iraq and he and she met in an online family support group. Not long after that she was hanging out with his family most days, going on family trips, and became an honorary Atkinson – a cherished “adopted” daughter. She later moved to northern California, but she and the Atkinsons stayed in touch.

Emory Fuqua

1557494_10152199622377474_1728514698_nEmory, also from the Bay Area, was SO motivated to donate, she got the mountains of applications and tests done in swift fashion. But when Scripps’ transplant committee evaluated her and Mike, they determined they were not a match. So they put them on the Paired Donor Exchange list. (Read Emory’s awesome blog chronicling her experience as a live donor.)

One of the committee members mentioned Glenn (who was already in Scripps’ system) and sure enough, he was a great match for Mike. Scripps scheduled the transplant for December 29, and also scheduled Emory’s donation the same day. Her kidney would be flown to a recipient in Colorado!

And the chain continued…that Colorado recipient also had a donor who wasn’t a match. That person’s kidney was donated and flown to a recipient in Michigan. And then a kidney went from Michigan to Georgia. There may be even more people part of the chain. (If anyone knows of kidney transplants that happened in those three states that week, please contact Mike.)

That makes so far ten people – five life-giving donors and five blest recipients – part of this chain of life – honored to carry on Amy’s Legacy.

While few people can be a living donor, almost everyone can donate in death and save a lot of lives!

 

Golf Tourney Report

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The event was a smashing success! Even if we hadn’t raised a cent, to have friends from the decades all together in one place was amazing. Stacy and I were overwhelmed with the love and support. We had 120 golfers and 160 diners at today’s fundraising golf tournament! Plus, my transplant fund was FULLY FUNDED! Thanks to all who helped and donated!

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Our wonderful Christian High ’78 fellow graduates and the Menconis!

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My kiddos and adopted kiddos, including Emory who is being tested to be my kidney donor, and the Elliots.

11218870_10153098713968016_7314646165213588710_nThis whole thing could not have happened without these amazing people. What a gift from God they are. It was their idea to do the tournament – and took me kicking and screaming the whole way – and committed a monumental amount of time to make it such a success. Love you guys SO much! (And Kelly thanks for letting us borrow them so much the last few weeks for this!)

 

 

Stunning Numbers

In my transplant classes today I learned some stunning statistics: 18 people on the waiting list die every die for the lack of donated kidney. Here’s why: Right now in the US there are 130,000 total people waiting for an organ transplant (heart, lung, liver, kidney, etc.). Of those 77% are awaiting a kidney (100,000). Last year only 10,000 people got a kidney (10% of the list) – 70% from a deceased donor and 30% from a living donor.

Now, not everyone can be a living donor. While it’s not a bad process compared to what is given someone, some just aren’t able. I get that. (Thankfully I have an amazing group of family and friends who are in the process of getting approved to give me a kidney.) But EVERYONE can be a deceased donor (hopefully later than sooner, right?). You don’t need those organs anymore. You can literally donate life as you pass on to eternity. What a legacy.

Please go to this website to sign up TODAY!