Today was Walk Day

What a great turnout!  At the 2016 Boston Walk for PKD we had 23 (two had to leave before this photo was taken) friends and family members representing Team Give Mike A Hand.  OK, yes, I know he needs a kidney, but the name references my maiden name, Hand, and goes way back... anyway, we had people join us from California, Washington, DC, Providence, RI, Maine... we had friends from college, from work, in-laws of in-laws, a great sampling of the awesome group of people who have supported us over the years and will be cheering for both Mike and his donor as they go into surgery in the not-too-distant future.

The weather provided some unusual excitement this year.  The Walk starts off with announcements and as soon as they made the announcement about Mike finding someone caring and generous and healthy enough to donate a kidney to him the skies opened and the next announcement was for everyone to go back to their cars and wait it out.  While the volunteers tried to keep the tents from blowing away we huddled.  About 15 minutes later the weather improved and we set off on an improvised walk before heading out for pizza and a great visit with some of our favorite folks.  

We were happy to go out and show support for the PKD Foundation and the work they are doing to help cure this disease, so a special thanks to everyone who shows up and helps us raise awareness and thank you to all those who donate.  We figure by this time Team Give Mike a Hand has probably raised over $40,000 for research!  We missed those who couldn't make it and we had grateful thoughts for all of you who have done so much to get us to this point.  

Next step... scheduling the surgery!

With never ending gratitude,

Samantha

Donor APPROVED!!!

Oh... WOW!!!

YOU did it!!!  Yesterday Mike heard from the donor who had been in testing for months and months that he had received final approval from the Transplant Institute.  We've had such a great response that we never doubted we would find the right match but the waiting was a little stressful at times...  We really had to put our faith in the amazing people at Beth Israel, that they had selected the right person for the job.

And, how is Mike?  He's relieved, he's tired, he's hopeful, he's grateful - even a little stunned!

And what's next?  Mike and his nephrologist will check in with each other every few weeks.  We are thinking the surgery will happen by the end of this year, but it's very hard to predict - especially with someone as large as Mike!  Mike's size throws him right off the standard charts... the approved donor is also part of the conversation as we try to make everything work out the best way for all parties.

The idea is to have the transplant done just before Mike gets to the point of feeling really poorly or as soon as something shows up in his blood work that indicates he is in danger.  The new kidney, if it takes well to it's new home, will not last forever, so starting the clock ticking too soon is a waste.  Waiting too long puts the outcome in more doubt - the better he feels going into the operation the stronger he will be coming out of it and the better the odds of a smooth recovery.  You can see how it's a tricky decision to make, but we have confidence that when the decision is made, the donor will be there. 

We know, all too well, things can change unexpectedly, but we can now rest easy for a bit, knowing that we have done all we can to hold on to that chance for Mike to have the best possible outcome - including having a host of people on our side and maybe even ready to help us if we have to try again.  And I know of at least one person who finally signed up as an organ donor :)

Gratefully,  Samantha (AND MIKE!!!)

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!

Thank you!!!  Samantha (& Co.)

Patience!!

Hello - 

I often get questions: How is Mike?  Have you found a donor?  When is Mike going to get a transplant?  I don't have all of the answers, but here is what I do know:  

Mike is hanging in there.  A lot of days he's very tired... but if he can rest and eat well and gets some exercise, he also can feel pretty good - he is still very lucky in that respect.  Things that the rest of us shrug off or get rid of in a few days (a mild stomach bug or a cold) can lay him pretty low and for a lot longer than it should, but so far, he's still able to bounce back and enjoy a bike ride or get through a day at work without feeling totally exhausted, or always thinking about how he rarely feels quite right.   He's anemic and his blood isn't being filtered properly and he has to drink a ton of water... but he's also pretty tough, thank goodness!  And he is still amazed at how generous and kind so many people have been.  That helps, more than you can imagine.

The donor search/testing continues!  This is where the patience comes in... there is no need to rush yet and the testing is a very time consuming process for the potential donor, so really, things are going along as they should.  If the potential donor currently in testing does not work out, the transplant team will kick it up a notch for the next in line.  The team keeps tabs on Mike's records and latest test results.  

The ideal time for the transplant is JUST before Mike needs it - not too early, and not too late.  If things go according to plan, we get news that there is an approved donor and then the timing is dependent exclusively on how Mike feels and the transplant can be done when it works well for both Mike and the donor.  It is possible that a mortality factor (high potassium, increased blood pressure) could crop up before Mike cries 'Uncle' or he gets sick and doesn't bounce back, but we hope it doesn't come to that.  The healthier Mike is when he goes in, the healthier he is likely to be when he comes out, and it would be nice to disrupt the donors plans as little as possible - they are already giving so much!

So, for now, we wait - we should have news before the end of August and we thank all of you for your generosity and your concern.  I can't say it often enough:  it means a LOT to us both.

Enjoy your summer! 

Ever gratefully, Samantha (& Mike)

A big THANK YOU to Harvard Medical School!

On Wednesday Mike and I had an amazing experience.  We were invited (thanks to the incredible Dr. Ted Steinman at BIDMC and HMS)  to discuss our experience with PKD in front of a group of students enrolled in an intensive class:  HMS TransMed:  Identifying Unmet Medical Needs and Translational Solutions.  Mike discussed his experience with the disease and I was able to speak to the effects of PKD on a patients family.   

The experience really highlighted two things in my mind:

1) PKD is, sadly, an example of a disease that desperately needs attention and has so far defeated the efforts of a small, but dedicated group who have been seeking a cure.  There is no cure for this disease, one of the most common life-threatening genetic illness.  It continues to wreak havoc on generations of sufferers.  

2) We, Mike & I, are incredibly lucky (an odd thing to say when facing an uncertain future) in that we have proper health insurance, access to the best medical care, and, perhaps most importantly, an incredible support network.

Thank you, again, for your support as we navigate our way to a healthy future for Mike!  And if you want to do anything for other PKD patients, the PKD Foundation could use your help as well.  We were very pleased to hear the panel of experts in the class speak highly of the organization!

Have a fantastic day - 

Samantha & Mike

These two articles.... are so cool!

Part 1: Using Tweets and Posts

Part 2: Finding Organ Donors

Please read them and pass them around.

Thank you!!!  Samantha

No news is good news...

Hello - 

So many of you kindly ask about Mike and our search for a new kidney, but right now there isn't much to report.  No news is good news, at this point!  Mike's latest blood work reveals that his situation is 'stable'.  Sadly, this does not mean his need for a kidney is any less urgent, but it does mean we still have time we need to find the right one.  Testing continues and with any luck at all we'll have the perfect candidate waiting when the time comes!

A common question we get is about the timing of the transplant operation.  There are clear indicators/mortality factors (for example, dangerously elevated levels of potassium in Mike's blood), but no clear timeline.   A lot will depend simply on when Mike and his nephrologist agree that to continue any longer without the transplant means more health risks and misery for Mike.  And, of course, there will be discussions with the donor!  Right now Mike just has to take excellent care of himself.  Some patients in his situation can be very adversely affected by a bad flu or illness, which would accelerate the timeline.  We don't want that, so sleep, nutrition and fitness play very important roles on a daily basis.

So, for now, no news is good news, and thank you to everyone who has Mike in their thoughts!!

Ever gratefully, Samantha

It's been a while! Happy Spring!

Hello!

Sorry for the lack of communications... but we've reached the stage where it's a waiting game.  AND WE ARE SO LUCKY TO HAVE SOMETHING TO WAIT FOR!  We have a donor in testing - one of the incredibly caring, generous, brave, wonderful people we know.  We have others waiting in the wings.  We want what they all want - for them ALL to be healthy enough to give Mike this crucial gift.

Meanwhile, might it actually be spring in Boston?  After a cold winter, we are enjoying the first of many warmer days.  Lots of you have asked how Mike is feeling - and thanks in large part to all of you, he is feeling optimistic!  He is still carefully watching his diet and exercising and sleeping as much as he can, and working, of course :)  One of the most important things is that he take the same advice we all get - eat well, exercise, get enough sleep - very seriously.  His dietary restrictions are more slowly becoming more stringent as his kidneys continue to loose their ability to filter poisons from his blood and balance his body chemistry, but he's very conscious of taking excellent care of himself.

Happy Spring!

Samantha ( & Co.)

What if you want to donate and worry about what happens if your KIDS need one one day?

Hi!  Happy Spring!

So, we've heard the question enough times that we decided it was time to address it!  We obviously can't answer it, but here are some thoughts:

Find out your blood type and your children's blood type and, viola!  You may not even be a match for your children.  Or you may be and you can either hold onto your kidney or hope that IF the time comes someone will do for you what you did for someone else.  Of course, the best scenario is that your children never need a kidney :)

But, it's a very good question, and you can get more information that might help you decide whether or not to donate to someone other than a family member.

Meanwhile - HAPPY SPRING!!!

Samantha

So, how goes the search??

Some of you may be wondering - what now?  We got the word out, we got an incredible response, what is happening?  To be honest, we don't know EXACTLY what is going on (but we're pretty sure that isn't Mike's new kidney hiding between our houseplants... thanks, Kara!).

We are letting the amazing staff at the Beth Israel Deaconess Transplant Institute do their thing.  The process of screening applicants is well underway, we know quite a few people have had blood work done, and the most appropriate candidate will move/has moved to the full screening (which can take up to six weeks).  With some luck someone willing and super healthy will be approved shortly so we will again have a plan in place.  They may go through a few candidates, and if anyone washes out I hope it's for a reason as acceptable as mine and not anything serious!

The screening process is deliberately anonymous and we totally respect that!  Donating a kidney is a big decision and volunteers have every right to go through the full process and learn everything they can about it, about their own health, about what it really entails, before committing to it or discussing it with us (or anyone else, for that matter).  So, we take a step back at this point and trust BIDMC to tell us if we need to do anything to help them.  And we trust in all of you that the right person has stepped forward!

Thank you, ALL, for making this a rather incredible experience and for giving us so much faith that we are almost back on track.

Ever gratefully, Samantha (& Mike)

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

CRASH-B FOR MIKE

Three years ago I decided I had been talking about being a rower for too many more years than I had actually been anything like a rower and I went back to the CRASH-B Sprints.  For those of you blissfully unaware of this event it is also known as the World Indoor Rowing Championships.  In other words, it's essentially a seated treadmill race.  It's hard for most people to imagine anything much more excruciating to either watch or do, and most people would not be wrong.  However, training for and competing in the CRASH-B's has rewarded me in a very particular way - I have again demonstrated, most importantly to myself, my strength and ability to endure a fair amount of pain and reap the reward of feeling both that strange sense of achievement and being stronger and healthier every day.

In my dreams I was going to convince Mike to train for this race post-transplant.  With his size and strength he would do really well.  We would go to the event together, him with his new kidney and me minus one, both of us stronger for it.  I've had to use that strength I've built up to re-work that dream over the last few weeks!

This year I rowed for Mike - he was not just my coxswain this year, but truly my motivation - and my parents were there with a big sign and all of you were there in my mind cheering us on and working with us to spread the word that Mike and SO MANY people like him need to find willing donors to give them the very strength they need to thrive, and maybe even to compete in future CRASH-B Sprints?  

Thanks to EVERYONE for your ongoing and amazing support.

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 

Asking for a kidney, when we didn't think we had to...

Hello - 

On February 11 our BIDMC Transplant Center Nurse Coordinator called with the news that my kidney function (GFR) had declined enough since my last tests in the summer of 2014 that I was no longer going to be able to donate my kidney to Mike.  I was at work, and the only person I could call was my mother.  I was dissolving into tears.  I was perfectly healthy, but had to go home and tell my husband, Mike, that I couldn't make this better for him the way we had it all planned.

Immediately I knew we had to rally our incredible family and friends, and their families and friends and co-workers and anyone else we could find.  This website is our attempt to do that and to give all of you the information you need to help us.  If there is anything else we can do, just let us know.

With hope, Samantha