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

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