The Walk, an update, a reminder & another campaign!

Well, despite a rainy start to the day, we managed to rally a team of 15 (including Sammy the dog), and we raised over $2,000 for the PKD Foundation.  It says a lot about how generous and caring our friends and family are that that I did a lot less fundraising work than I usually do but was still able to pull that off!  Thank you all -- AGAIN!

2017 - another one in the books!

2017 - another one in the books!

The best part was that at the Walk, the other participants could clearly see how well Mike is doing.  Last year at this time, Mike was just hanging on - he was tired all the time, never felt right, often felt downright bad, and it showed.  He was really sick.  The 3-mile Walk was a chore.  But this year?  Easy!

Mike has come all that way even though - as you know - his has not been the easiest recovery.  Despite two rounds of IVIG (in December and in May), he is still dealing with Parvovirus, which puts us in somewhat uncharted territory (but we're still in the hands of excellent doctors.)  The good news is that Mike is currently asymptomatic, and the longer he is out from the transplant date, the more confident they are that they will be able to solve this relatively minor problem.  Mike and his team are working on it, and we hope that he will remain asymptomatic and eventually (we're talking a year or so from now) get a negative test for the virus.

One more thing we've been trying to do this past year is to help spread the word about others who are also seeking amazing people who are both healthy enough and generous enough to donate a kidney.  A while ago, I shared the story of our friend and neighbor David Ganak - he's still searching!  There has been a good response, but please - continue to share his story if you can.

Now, Marc Rubman, brother of our friend Judy, has launched a search for a new donor.  He has had a rough couple of years but has been cleared by the Mayo Clinic to find a donor.  Judy, who has PKD herself, welcomed us into the Boston PKD community years ago.  She has done endless great work for the PKD Foundation, and has been a great source of support and information over the years.

All it takes is to spread the word --  the right kidneys will be found, and we can keep two more great guys and their families on the right side of healthy and away from dialysis clinics and hospitals.  Maybe it's your second chance (if you were disappointed that Jon got chosen over you to donate his kidney to Mike.)   ;-)

As always - we are immensely grateful for your love and support, and as we approach one year since the transplant, we can honestly say that we cannot imagine having done any of this without you all...

Samantha (& Mike)

 

It's March - it's National Kidney Month!

I still can't believe a year has passed since I last posted about this, but it's National Kidney Month.  Mike, even with a FANTASTIC transplant is still suffering from PKD.  Thousands of people are suffering from PKD, CKD, from... here is a list  - it's LONG!  Research into treatments and cures will be essential until each one of these diseases is eliminated or easily managed.  If you have the inclination, you can learn more about PKD and kidney disease and maybe help be clicking on the link to our favorite group, the PKD Foundation.  THANK YOU.  Samantha & Mike

The PKD Foundation 

The PKD Foundation 

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