NEXT UP: SURGERY. End of October!

Now that we are lucky enough to have an approved donor (THANK YOU!!) we are all preparing for surgery at the end of October!  Six weeks away and not a minute too soon.  Mike is starting to really feel the effects of kidney failure.  Knowing we have a plan makes it easier, but the exhaustion, mild (hopefully it stays that way) nausea, headaches, restricted diet, modified work schedule, interrupted sleep... a generally compromised system... it's all starting to wear thin.  For some PKD patients it's much worse, but either way it's no picnic.  So, we are counting down the days.

What is this going to be like for all of us?  Mike and I are trying to get our ducks in a row before the surgery - paperwork, insurance, arrangements with work, preparing for complications but hoping things go smoothly and within days Mike is feeling better than he has in YEARS and within weeks he's out and about.  The donor and his family are doing the same things only when the donor comes out of surgery he's going to have gone in healthier than most of us could ever hope to be and he's going to come out hurting - poor guy!  But he's tough and if everything goes as it should he also will be out and about within weeks.  We are all looking forward to both of them returning to their regular lives!!

Many of you have asked what you can do to help and if all goes well there isn't really much we need - just more good wishes!  You've already done so much, supporting us in our search, offering to be tested, being tested.  We were overwhelmed.  If things don't go as planned or as expected, for either Mike or his donor, we may well ask for help, but until then, I'll do my best to keep you up to date.

For now, that's all I have.  Still feeling so lucky to be headed towards the big day and in the best of company :)

With love and gratitude - 

Samantha

Boston Walk for PKD

Hello -

We are still waiting on final results for our awesome potential donor, which is hard, but in the meantime we have a great event to take our minds off the search:  the Boston Walk for PKD.  This year the event takes place on September 11th and it will be the 12th year (I think...) that I have done the walk.  The PKD Foundation is an amazing group that does really important work in gathering and dispersing funds for critical (an otherwise under-funded) PKD research and raising awareness of the disease.

We will be walking with Team Give Mike A Hand and you can join our team and walk (for free) or donate to an excellent cause, simply by clicking on our team photo from 2015 below!

 Team Give Mike a Hand - click to join!

Team Give Mike a Hand - click to join!

Thank you!!!  Samantha (& Co.)

Happy World Kidney Day!

Happy World Kidney Day!  Today Boston's Zakim Bridge, and the Empire State Building in NYC are lit up with orange lights to raise awareness of kidney diseases & the research being done to combat them.  It's fitting that March is the month we might hear some news about a donor for Mike!  We are so grateful for organizations like the PKD Foundation and the National Kidney Foundation that do such excellent educational work.  And we are SO THANKFUL for all the support you all have given us over the last month.  Samantha & Co.

Thanks, Sculling Fool & EVERYONE.

Big thanks to the Sculling Fool for the great photo from last weekend's CRASH-B sprints - scroll down to March, 4th!  Thanks to EVERYONE who has volunteered to be tested and helped us spread the word, and, as always, continued thanks to my parents, for their constant cheering, to my sisters, for designing the logo and the sign!  We are getting a fantastic response and every day are more confident that Mike's new kidney is out there and soon a generous and wonderful donor will be approved.  

This process takes time and the waiting is hard on all of us, but it would be so much harder if we didn't have so many great people on our team.

THANK YOU.

Samantha & Mike

Spread the Word About Kidney Donation

Thank you so much, Mom & Dad!  Please read this opinion letter written by my parents (Mike's in-laws) to the Gloucester Daily Times and published yesterday.  

We are so lucky to have their support in this search for Mike's new kidney.

Have a great weekend and thank you all, again, for your help!

Samantha 

BEING A KIDNEY DONOR IS NOT AS HARD AS IT USED TO BE!

Don’t get me wrong, we don’t take this lightly. And we wouldn’t be asking anyone to do this if Samantha hadn’t been ready to step onto that operating table herself right up until the nurse called a week and a half ago. But things are a lot easier now than they were even a few decades ago.

Up until the mid to late 1990s, kidney donors underwent an operation that required a 6-8 inch long incision, spreading of the ribs (sometimes even removal of a piece of rib) to reach the kidney, considerable pain, and required more than a month of recovery before returning to work.

Today, the operation is laparoscopic with no need to disrupt the ribcage or cut through musculature, resulting in a significant reduction in pain (most patients use oral pain medication for about 5 days), hospital stay of 2-3 days, and 2-4 weeks recovery before returning to work (more if you do physical labor).

As a veteran of laparoscopic back surgery, I can attest that it is an amazing thing!

With gratitude for all you’re doing for Mike,

Lindsley (Mike’s sister-in-law)

As we search for Mike's new kidney it's important to remember that there are many people in similar situations. Like John Bernatz. Please read his story.

Today a friend (whose aunt donated to her father) shared this link to friends of hers who are now in need.  Like Mike, John thought he had a donor lined up, and something happened - in his case at the last minute.  John's illness is different, but his story, so thoughtfully chronicled by his partner, Joe, is quite similar, though accelerated.  Please take some time to visit his page.  John Bernatz Needs a New Kidney, especially if you are on the West Coast!

Patients needing a kidney donation make up the majority of those waiting for transplant and when a living donor steps forward and takes someone off that list to live their healthiest life possible it not only helps that patient, but other patients on the list who aren't as lucky.  In addition, one living donation that leads to a better outcome can mean the patient does not have to go back on the list for another wait, and another kidney.

Check out the facts here:  UNOS Data

THANK YOU  - on behalf of of Mike, John and all those waiting.

Samantha



HOW LONG DOES IT TAKE TO FIND A KIDNEY? GOOD QUESTION!

One of the reasons we are so anxious to keep reaching people with our quest for Mike's new kidney is that screening takes time and, as perfectly demonstrated by my own experience, things can change.  So, how long does it take to screen a donor??  The process is very well spelled out in this document from BIDMC, but the timeline is CRITICAL.

1. Week 1 - 2: the process starts when you fill out the intake form on the BIDMC website.  The fabulous Tracy Brann gathers these and the donor team reviews them and calls each potential donor to either explain why they are not suitable or to request a blood test.

2. Week 2 - 3: blood tests are collected and BIDMC again reviews and calls potential donors.  At this point the best candidate for full evaluation is selected.  We want the donor team to have as many great choices as we can before they make a choice to proceed because the next step takes a lot of time.

3. Week 2-8: one candidate is fully evaluated for the ability to donate SAFELY to Mike.

YES, it can easily take TWO MONTHS to find the right donor.  If, during the full evaluation the selected candidate is found to be unable to donate (there are many reasons why otherwise perfectly healthy people can't donate) and we are lucky enough to have another candidate waiting in the wings, the full evaluation begins again.  As you can see, these months can add up and the whole idea is to have a kidney ready for Mike when he needs it, and with enough time to spare that the actual transplant can be scheduled with some regard for the donors plans as well.

We can do this.  With your help!!

Gratefully, 

Samantha 

WOW.

THANK YOU & keep up the great work!  The more people you tell, the more of those screening forms we send to BIDMC, the better the odds we find a fantastic kidney for Mike.  Amazing.

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