PKD WALK 2019

We did it! For the last 14 years there has been someone representing Mike and his personal and family battles against PKD. Last year we definitely made the effort and it was awesome in it’s own right…

PKD WALK 2018 (totally great, but missing something)

What a difference a year makes!

PKD WALK 2019 - Regaining strength! (We did miss you, Kim!)

TEAM GIVE MIKE A HAND

Mike easily walked all 2.8 miles. We had a great group, a gorgeous day, excellent info, all well organized by the PKD Foundation. Our team raised nearly $5,000 dollars which will all go straight to research to help find a cure for PKD! You can click on the link above it you want to add a donation, or join us next year - we’ll be there!

This month Mike and I celebrate our 10th anniversary and Mike’s 50th birthday, too! Both are milestones we have only been able to reach with help & kindness from all of you. Next month we celebrate THREE years since the transplant! Again, we are beyond happy to not have to imagine what life would be like without the incredible gift given to us by Jon with all of you in support.

Gratefully,

Samantha & Mike

BUCKLE UP. IT'S A BIG UPDATE.

Almost a full year ago we updated you on 18 months and counting and in April, May & June Mike was feeling better than he had in YEARS. Then, on June 14th he went mountain biking at Highland Mountain Bike Park and was having a blast until he went off a relatively easy section of the trail and flew, head first, towards a LARGE boulder. Luckily he did not hit the boulder with his head, but turned in midair to hit with his left hip, roll over it and drop off the other side. He landed about 15 feet off the trail and, both astonished and grateful that he was alive, called out for help. A crew came and extricated him and took him to a waiting ambulance which delivered him to the hospital in Concord, NH. I got the call from him as he waited in the ER for a battery of x-rays on his left hip and foot and right arm.

By the time I arrived at midnight Mike had been evaluated and they had started putting him back together. X-rays showed a badly fractured left hip and that his femur had been driven through it - they immediately put him in traction for that. In the left foot the talus bone and a metatarsal were fractured, but in place, so they immobilized his left leg from the knee down. As a bonus there was a radial head fracture in his right arm - luckily that required no real treatment other than time. There was no evidence of head, spinal or internal injury and there was only a small cut on his right ankle. The protective gear he had been wearing did a great job.

I won’t drag you into the details of getting Mike back to Beth Israel in Boston but the first ambulance crew that came at midnight on Friday left, having determined he was in too much pain and too big for their ambulance… Monday he had surgery on the hip that involved about 14 screws and 61 staples. He stayed another week at BIDMC and was then moved to the amazing Spaulding Rehab in Charlestown for the duration of his 4 week stint away from home. Spaulding got him set up with an extra tall walker, gave me instructions on how to prep our condo and sent him home!

The usual worries about traumatic injury were compounded by the complexities added by that amazing kidney and the immunosuppression required to keep it happy. We thought we were doing really well for the first 5 weeks - Mike’s creatinine numbers were fantastic and he was healing on schedule and then things went a little crazy.

COMPLICATION NUMBER 1: BACTERIAL INFECTION. WEEK 6. A week after coming home Mike picked up on an infection in the incision on his hip. Back to BIDMC for what turned into another week and included antibiotics, tests and wound debriding. We dodged the bullet of a deep infection which would have prolonged his recovery for months and again he came home.

COMPLICATION NUMBER 2: VIRAL INFECTION. WEEK 7. One day after coming home for the second time Mike got a call from his very observant, caring & concerned infectious disease specialist (who got to know Mike well during the Parvo battle) and who had been consulted about the bacterial infection and was watching his white blood cell count again go awry. Mike tested positive for CMV (cytomegalovirus). Treatment for CMV in transplant patients has become pretty straightforward due to a targeted anti-viral medication. Mike was prescribed this medication and instructed to back off on his immunosuppressive drugs so his system could fight the virus.

COMPLICATION NUMBER 3: BLOOD CLOT. WEEK 10. Three weeks after the CMV testing Mike was diagnosed with a DVT (blood clot) in his left leg, which was spotted by his alert home physical therapist. Hip surgery patients are at highest risk for blood clots post-surgery. Add a couple of foot fractures and the other surgery and Mike was probably destined for this one. The trouble came with the treatment. The initial high dose of blood thinners triggered the appearance of blood in Mike’s urine The transplant team was confident the blood was coming from the cysts in his PKD kidneys, but for a couple of weeks it was also visible, unpleasant and worrisome evidence of Mike’s underlying condition.

COMPLICATION NUMBER 4: REJECTION EPISODE. WEEK 13. As the team at BIDMC followed weekly labs on the CMV progress we all noticed Mike’s creatinine numbers were creeping up and 12 weeks after the accident, BIDMC issued a recall and in he went again. To fight CMV immunosuppression has to be lowered. To fight a rejection it has to be raised. To diagnose the rejection they needed to perform a needle biopsy. To prepare for a needle biopsy blood thinners needed to be stopped and cleared. There were other hurdles (turns out he wasn’t fully weaned off the opioids and went into withdrawal… NOT FUN), but finally a biopsy was performed, acute rejection diagnosed and declared ‘minor and treatable’ and treatment started. By the end of week 13, Mike came home again.

NOW? After 8 months of ups and downs Mike’s system seems to be returning to the nice state of homeostasis achieved pre-accident and he has finally returned to work! He can’t yet work as a crane operator or mover, but Gentle Giant has found a temporary home for him in quality control helping customers. He’s settling in there and slowly regaining strength and stamina. He continues to have regular labs that will check his kidney function, check for Parvo and CMV, and follows up with hematology on the blood clot and with orthopedics on the broken bones. His right arm is back to 100%. He has been diligently stretching his hip, has been back on the bike (not in the woods yet!) but still needs PT on the left foot to get the full range of motion back as the nerve in his left leg recovers. He wears a brace on his left foot and just this week was able to visibly move the toes on his left foot! The orthopedic team still says they expect a full recovery, but he will likely need a hip replacement sooner than he would have otherwise - depending on the level of re-vascularization of the femoral head and the pain he may have over time due to the damage to the cartilage in the joint when it fractured.

Through it all we have been totally amazed at the care we’ve received and Mike has remained very positive and determined to get back to where he was before the accident - feeling great and making the most of this second chance at a full & fun life.

Meanwhile, our friend David had his transplant in October and it doing really well! Our advice to him is to avoid massive trauma :)

With crossed fingers and continued gratitude for the doctors, nurses, support staff, family, friends & coworkers who get us through these things, Samantha

PLEASE HELP US SPREAD THE WORD FOR DAVID!!! →

ALL - we've been quiet for a while as things move slowly back towards normal.  We're really looking forward to spring and hoping to help someone else find a kidney donor so they can have their chance at a healthy life as well.  

Our friend and neighbor, David, has been looking for a donor for ages now... he's had tremendous support and his story has really become something of a roller coaster ride.  Years ago David's sister was approved as a donor and as David got closer to needing the transplant she was unexpectedly eliminated (kind of like me & Mike).  In this case however, she was eliminated due to a serious (but curable) health problem.  Subsequently eight potential donors stepped forward and were tested, but were eliminated one after the other.  So, instead of improving his own health David's search has so far resulted in possibly saving the life of his sister and probably improving the long-term health of willing friends who have been disqualified due to previously unknown health conditions - ranging from dangerous to inconvenient, but has not helped him! 

PLEASE, CONSIDER HELPING DAVID  - remember that all it takes is SHARING THIS LINK WITH THE RIGHT PERSON :)     

 WWW.KIDNEYFORDAVID.ORG

And as always, we remain grateful to all the support you've given us - we couldn't be here, trying to help someone else, if you all hadn't helped us!

With hope & gratitude - Samantha & Mike

ONE YEAR!!

A year ago yesterday Mike & Jon went into surgery at Beth Israel; Jon, donating with the hope of helping Mike regain his health and Mike with the hope that he would be well again and get back to living his life without feeling awful most of the time.  We had one shot at the best possible outcome for Mike - a successful, living transplant, avoiding dialysis.  

Well, it WORKED! 

Jon has gone back to doing his thing, with just a scar to show for it, and a TON of good karma, and Mike has gone back to work, to riding, to just doing his thing... with a new appreciation for his good health and good luck.

On Friday, we went to Beth Israel for Mike's one-year follow up with his transplant nephrologist and everyone is really happy with the way Mike is feeling, the test results they see, everything.  Mike's immune-suppression has been adjusted to keep the (rare) persistent Parvo at bay, he is no longer anemic (for the first time since 2004), he's able to eat pretty much whatever he wants, he feels better than he has in YEARS, he's... normal!

It's repetitive, I know, but we could not imagine being were we are today without all the incredibly generous people in our lives.  From the day I got word I could no longer be Mike's donor, to six months later when we got the word Jon had been approved, from the day a year ago that Jon's kidney began doing it's thing for Mike, through Mike being sicker than ever in November and December last year, through Parvo recurrences and more bumps than we expected... I can tell you we would not be where we are today without all of you.

With immense gratitude & love - 

Samantha & Mike

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!

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)

PKD Walk - Saturday, September 30th →

I don't have to tell any of you how important this cause is to us... but we also know how much we have asked of all of you over the past year and a half!  So, please - do not feel obligated to do anything other than read this message. Your support, every day, has meant the world to us and without you we would not be able to do our part to help the PKD Foundation spread the word about PKD and the effect it has on everyone with it and on everyone who cares about someone with it.

Mike and I will be walking this year, as we do every year, in solidarity with others who are affected by PKD, in support of those who research it, and with a sense of immense gratitude for how far we have come since last year at this time. It hasn't been an easy year, but we cannot imagine what it would have been like without all of you rooting for us, donating your time, your energy, and even... yes... A KIDNEY!!

PKD - Polycystic Kidney Disease - is one of the most common life-threatening genetic illnesses. It strikes both adults and children, men and women, around the world. It often leads to the need for dialysis and a kidney transplant. It affects hundreds of thousands of Americans and millions worldwide - all of whom are in urgent need of treatment and a cure.

The Walk for PKD is the PKD Foundation's largest annual fundraising event. Funds raised from Walks across the country make up one third of their annual budget, 78% of which goes towards groundbreaking research and desperately needed education & advocacy programs.

You can help by joining the Walk as a participant, donating, volunteering (just click on the link under the photo) or simply continuing to support us as we move forward.

Thank you,
Samantha & Mike

PS - I owe everyone a update on Mike - he is well!  I'll be back soon!

Ups & downs, but mostly ups! (and a request)

Hello, all!  

Before the transplant surgery Mike's nephrologist shared some words of wisdom with us.  In essence Ted told us that after the surgery things would get better, and then worse, and then better and then worse... but each time things went downhill, the low would still be better than how things were pre-transplant.  And every time things got better, it would be better than it had been in ages.  We have found those words of wisdom to not only be VERY comforting, but very TRUE.  

In December when Mike was hospitalized with Parvo we knew that these types of things were to be expected, so we weren't caught off guard or overly stressed (just tired).  Yes, Mike was super sick, but it was a different sick and it was temporary and we knew it would get better.  And there were ups and downs after that, but things kept improving overall through the winter and spring months.  At the end of April and in early May Mike was working regularly  - in between follow up appointments and physical therapy (deferred maintenance) - and we were able to make plans with some hope of keeping them.  Shortly after my last post we even got news that Mike's red blood cell count was high enough for him to be out of the anaemic range for the first time in THIRTEEN YEARS.

Then on a Tuesday morning in mid-May Mike woke up with sore joints in his hands.  Small joint pain and stiffness is a major symptom of Parvo in non-immune suppressed adults (I had it) and for Mike it was a symptom that turned up late, caused some agony, and stayed around for a while.  Two days later Mike was at BIDMC for blood tests and a Parvo test.  We waited all weekend for the results (it takes 4 days), but I'm going to brag and say that Mike was a champ.  He didn't let it get him down.  One of the reasons why he was able to stay positive was that we knew Ted had predicted all of this, but still with a great final outcome. 

After four more rounds of IViG in late May the symptoms of Parvo are quickly going away (and should stay away this time), and because Mike recognized what was going on immediately he never got even close to as sick as he was in December.  He's still battling the virus a bit, but the days when he feels good he says it's the best he's felt in probably three years.  That's pretty damn good!  Imagine how good he's going to feel another month from now when he's both in better shape and another month further away from all of this Parvo nonsense?!  

Meanwhile, we have a friend who has started his campaign to find a kidney and we'd like to do what we can to help him get to where we are today - on the way UP!  David is a genuinely good guy.  He's brave, he's generous in spirit, he's kind, he's thoughtful.  His story is a lot like ours - his sister was lined up to donate a kidney and during the final rounds of testing they found Stage 1 ovarian cancer.  In effect, David's illness may have saved his sister's life, but now he needs our help to save his.  If you could share the post about David, pass on his website www.KidneyForDavid.org, or simply support him on facebook, we'd be ever so grateful.  You know the drill - sharing the story is everything and somewhere out there is the match for David so he can begin his journey UP.

Thank you!!!!  

Gratefully, Samantha (& Mike)

SIX MONTHS!!!

Six months ago today Jon went into surgery early in the morning and as soon as he was ready to give up that beautiful kidney Mike joined him and got it.  It was the day we had been working towards for a LONG time... and all of you helped us get there.

While we haven't had the easiest time over the last six months it's been a lot better than it would have been without Jon & his family and transplant, or without the amazing team at the Transplant Institute at BIDMC, or without support and kindness from our friends and family, so we aren't complaining AT ALL.

And I am not one for over-the-top celebrations and I don't want to set up up for disaster by proclaiming success, but we are enjoying the increasingly frequent days when it seems like life is getting back to 'normal' - which for us means we can work, hang out with our friends and families, enjoy the spring weather (finally), get out on the bikes... and even get back to jumping in the quarry into really COLD WATER!

THANKS, EVERYONE!!!

When going back to work is a GOOD thing. Thank you, Gentle Giant!

Last week Mike went back to work.  Whew.  Most importantly, this means that he felt confident that he was able to commit to a work schedule and then feel well enough to follow through.  What a relief!!  He'll ease back in to a full schedule, as his work can be taxing and he really is still recovering from the transplant and the Parvo, but he enjoyed his first day back and received a warm welcome.  Most of you know that Mike works for Gentle Giant Moving Company, as does Jon (who thankfully had a smooth recovery and has been back to work for months), and I want to thank everyone there for having been truly supportive throughout the last year.  We would have been in a much tougher spot without the GG crew!

Gratefully, 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 

AT LAST!

We did it!  4 months post-transplant and we hit the slopes today.  It felt like a HUGE step towards getting back to a new normal.  After a few sunny runs in spring conditions Mike was back in the swing.  He'll be sore tomorrow, but luckily, Jon's kidney seemed to enjoy snowboarding as much as Mike does.  We even got to start the weekend off with a really nice reunion with Jon and his excellent family.  Jon reports that other than needing to catch up a bit on his fitness he is 100% recovered - working, playing guitar, doing his thing.  I can't even fully describe how happy and grateful I am right now.  Thanks to EVERYONE who has helped get us back on track!  

Happily, Samantha

Progress continues!

Mike has recovered from the Parvo and even, on a warm Saturday in January, went for a bike ride - which is precisely what we wanted to have happen!  And he just felt out of shape - NOT SICK!  Last week his red blood cell count (RBC) almost made it out of the anemic range - better than it has been in two years.  His kidney function was better than it has been in NINE YEARS, and finally his white blood cell count (WBC) has tested in the healthy range.  I  hesitate to make a prediction, but I think things are sloooowly getting back to normal.  In reality, it's a new normal.  We're adjusting to having to be always vigilant for sources of illness and infection, and the medication schedule will always dictate some of our lives, but what a small price to pay for Mike not actually being and feeling sick ALL the time!  With some luck soon he'll be back at work, volunteering to walk dogs, riding a bike on every decent day, snowboarding even, just being Mike.  

And, most importantly, Jon continues on as if he never gave up that extra kidney ;)

With never-ending gratitude - 

Samantha & Mike

Healthy New Year!

Here's to a healthy 2017!  

I haven't updated at all since Thanksgiving - wasn't quite sure what to say since for a while we didn't know anything was wrong, then we didn't know what was wrong and didn't want to alarm anyone, AS THE NEW KIDNEY HAS CONTINUED TO WORK IT'S MAGIC, and then we pretty much figured out what was going on but wanted to see what would happen.  

Here's the short version:  Parvo B-19.  It's a virus most people are exposed to in childhood, often known as 'slapped cheek' of 'fifth disease' and in kids, it's no big deal.  In immunocompetent adults it's no picnic, but not that big a deal.  In those who are immunocompromised or immunosuppressed it's NOT FUN.  We have been so careful about all the hand washing and food handling and Mike has been otherwise healthy so there is a possibility that he had the virus latent in his system, or it just got by us somehow.

A bit of a timeline on post-transplant immune suppression:

Months 1-3 - Immediately post-transplant Mike was given a massive dose of ATG, which has a strong effect on his immune system for roughly 3 months.  He has to be extra careful of infection, especially to things that will upset his GI function and he's taking prophylactic anti-fungals, anti-virals & anti-biotics, along with the long-term immune suppression (anti-rejection) medications & blood pressure medications.

Months 3-6 - Mike's system will slowly rebound but he'll still at risk and taking prophylactic anti-viral & anti-biotic medications along with the anti-rejection and blood pressure meds.

Month 6 - The anti-viral goes away, but not much else changes.

Month 12 - At this point Mike's immune system should be relatively normal and the list of meds down to something more manageable!  He will, however, take the anti-rejection drugs, at the very least, for the life of the graft - hopefully for a looooong time!.  He'll have to be disciplined about the meds, sunscreen and food handling, but with far less worry.

Here's the long version:  Around Thanksgiving Mike sort of stopped making progress - especially in terms of his energy levels - and the lab results began to show both his red and white blood cell counts (RBC & WBC) dropping.  The Tuesday after Thanksgiving he suddenly developed back pain and woke up Wednesday with a fever.  His medical team admitted him and quickly ruled out a rejection episode, much to our relief.  Common post-transplant causes of fever (CMV & BK, among others) were also ruled out.  The symptoms went away and after thrree days he was released - the assumption being that he had just had some minor viral infection and possibly unrelated back pain due to weeks of reduced activity.  Certainly Mike's nephrologist had come to the conclusion that Mike is 'not typical' but we knew that :)  They continued to adjust medications, hoping his counts would rebound and there was some progress, but there was also enough worry that further tests were done after a second back pain & fever episode the week after he had been hospitalized.

In the meantime, while Mike was hospitalized I developed swollen and painful hands and feet and my WBC & RBC numbers both dropped.  I was uncharacteristically ill for over a week.  My doctors ruled out rheumatoid arthritis, Lupus, Lyme & other tick-borne illnesses, but I was clearly fighting some sort of virus.

In mid-December we finally got a diagnosis - Parvo B-19.  One call to my doctor confirmed in all likelihood it's also what I had, but what took me days to fight off, simply by taking it easy and working from home for a bit, was going to require four 8-hour IViG (intravenous immunoglobulin) treatments spread over 2 weeks for Mike.  Before he got a chance to start the treatments though, the back pain returned and at 3 am on a snowy Saturday I drove Mike from my parent's house an hour into Boston to BIDMC.  From 4 am until 7 pm the ER doctors sought to rule out a life-threatening cause of the symptoms; they did an ultrasound on the new kidney to rule out rejection, they x-rayed for structural defect, they debated the effect on the new kidney of various contrast dyes (in consultation with the on-call transplant team), they did a CT scan to rule out an infection and abscess in his spine, all while waiting for a bed to open up on the transplant floor.  On Sunday they did an MRI... nothing.  The ongoing fever, foot swelling and sensitivity, miscellaneous areas of leg pain, sporadic back pain, swollen fingers, intense pain and increased sensitivity to heat in the hands (relieved only by narcotics and holding on to ziplock bags filled with ice) were all just part of the weirdness associated with Parvo in post-transplant patients.  Monday the IViG treatments started, along with several blood transfusions.

Just in time for Christmas Mike got out of the hospital again.  This time, we hope it's for good!  The IViG takes a couple of weeks to reach full effect and has a long half-life that with some luck will allow him to fight off the virus and protect him until his own system rebounds a bit and can take over.  Our thanks again to the incredible team at BIDMC, especially those who take such good care of their patients on Farr 10.  Thanks again to our family and friends who keep us moving when we are sick and tired.  And, as always, thanks to Jon, whose kidney has been chugging along and keeping Mike's system in better shape than it has been in ages, despite being assaulted with uncommon viruses!  in between minor bouts or Parvo symptoms Mike is really feeling better than he has in months and that's what we are focusing on as we start 2017!

Love & Health - Samantha & Mike

HAPPY THANKSGIVING!

It should be obvious that we are incredibly thankful on this November day.  We are thankful for every one of you who reached out and helped us through this last year.  We are immensely thankful for Mike's donor, Jon Powell, and his patient and generous family.  We are thankful for the amazing staff at Beth Israel Deaconess who continue to check in with Mike on an almost daily basis to monitor his progress and keep him healthy.

We hope you all have a lovely day!

Samantha & Mike

HOME, CLEAN HOME!

Two weeks ago we were spending one last night at home before the transplant.  Jon & Elena were doing the same before Jon gave Mike the most incredible gift.  Tomorrow... Mike and Jon are going to spend the afternoon together and they'll both be conscious this time!!

So, what is happening with Mike now that he has had this amazing shot at being healthy?  A LOT.  Where do we start?  Medications?  Lifestyle changes?  Follow ups?

Medications:  Mike takes approximately 50 pills a day.  15 types of medications.  He also weighs himself and takes his temperature once a day, takes his blood pressure twice a day, and keeps track of how much he pees...  Luckily he is really good at tracking all this!

Lifestyle changes:  You might have guessed that a priority is keeping things CLEAN.  Transplant patients, especially in the first few months, are very immunosuppressed.  Mike could easily get sick and be sicker than the rest of us.  Though we've been told we don't need to live in a bubble, it's hard not to go overboard and clean EVERYTHING!  I now have hand sanitizer in every corner of our home, auto, my office, and....everywhere.  I do a lot of laundry.  All food also has to be either washed and/or thoroughly cooked, and well-considered - Mike still has some dietary restrictions, but far fewer than he did two weeks ago.  I usually take public transportation to work, but I've avoided it as much as possible.  It's flu season... the holidays are coming up...  It's a little bit tricky, but WORTH IT!

Follow up:  Mike has appointments one or two days a week - sometimes two a day - and he has labs done twice a week, all for at least six weeks post-transplant.  We've never been more glad to live near some of the best hospitals in the world!  People who don't live nearby have to find a way to make the repeated trips and it can't be easy.  Once again, we are lucky.

Mike still has sporadic pain from an old hernia repair that was close to the 9" incision  They pumped him full of fluids and that's mostly gone - he was as heavy as 311 lbs in the hospital and looked like a watermelon when he came home!  He's weaker than he was before due to limited activity, but he no longer feels SICK!

So, here's to Mike & Jon's big day out tomorrow!  Two weeks into a new lease on life!

Ever grateful,  Samantha & Mike

NOW WHAT?! Beyond grateful.

Mike and Jon are both home.  5 days later... wow.  Jon went home over the weekend to his amazing family and is recovering and trying not to get bored!  Mike came home today.

The 5 days in the hospital were... BUSY!  I tried to keep track of the number of team members who checked in on Mike during a day - nurses, surgeons, nephrologists, coordinators, educators, social workers, pharmacists, nutritionists, physical therapists, techs, orderlies... and friends and family.  I failed.  I literally couldn't keep up with the stream of generous, caring and wonderful people who were in and out.  The only downside was that it's exhausting!!  A small (tiny) price to pay.

Now, hopefully, when we get Mike comfortable, he'll sleep - lots of healing sleep and time to focus on resting and learning a new routine of taking care of the new kidney!  So far the function is exceeding expectations and it's all going to be about managing the medications.

More on that later, but for now - a million thanks to the CROWD of people who have helped us get this far.  It's been an amazing experience and hard to describe right now, but we have confidence we are going to be able to make the most of it and honor the gift Jon & Elena and their daughters have given us.

Gratefully, more so than ever,  Samantha & Mike

UNBELIEVABLE!

I cannot begin to tell you what it's like to have this happening.  Mike's new kidney (OK, new to him...) is WORKING.  We've been quiet about the donor, but his name is Jon, and at 6' 7" he's only an inch shorter than Mike.  Today the amazing staff at BIDMC must really have wondered what was going on as these two enormous men began tottering down the hall in their little johnnies! 

Less than 24 hours after surgery they were both in some pain, but doing as well as, if not better, than could be expected.  Jon and his amazing family were subjected to our insatiable need to thank them and Mike's creatinine clearance numbers (key indicator of kidney function) had dropped an incredible 40%.  The smile on the face of Dr. Ted Steinman (Mike's absurdly caring pre-transplant nephrologist) as he kissed Mike on the forehead and then met and thanked Jon said it all.  

We can't wait to see what happens tomorrow. 

Thank you, to EVERYONE who has continued to send kind thoughts, support and love - we wouldn't be here today without you.  

Gratefully, Samantha & Mike and our families.

TRANSPLANT!!!

DONE!!!  Both Mike and his donor are out of surgery and all went well!  Now, we just wait and hope for perfect acceptance :)  THANK YOU, ALL - for all the support - we could not have done this without you all.  

With incredible gratitude, Samantha (& Mike)

ONE!! Tomorrow is the big day for Mike and his donor. We can't thank you all enough for helping us get here. More news soon!

And an idea from Bailey - my sister, Mike's sister-in-law!  CLICK HERE to leave a message for Mike or his donor!