Robert Jankowski II

Post Transplant! This is the page for Rob Jankowski II, (husband of Kara Shockley Jankowski), who has received a Directed Donation of a Liver and had his surgery on 5/10/24.

~Forever sending love, care and appreciation to Rob’s donor family!

This has been a big roller coaster but we’re happy you are hanging in there with us! The journey has just begun and I’ll be updating you along the way.
For anyone new, since the May 10th surgery Rob has returned to the hospital three times. Once for internal bleeding, Aug 1st for new abdominal pain, and Aug 6th for severe rib pain after an accident at home. With his immunosuppressants he joked that he should be in a bubble, but I think he should be encased in bubble wrap!! 🙂

At home, we are working on his new schedule which includes 3 blood sugar readings per day, a special diet, twice weekly labs at the hospital and too many pills to count. (Update! he no longer need to test his blood sugar, he can eat normally and only gets labs once a week!) We record his vitals daily and report any abnormalities to the team. He also has to be extremely careful about infections and especially about the sun, as his skin cancer risk has increased greatly. We’re talking NO sun exposure without sunscreen, and he can’t be in a lake, pool, hot tub or ocean for at least a year if not longer.

We’re hoping for the very best in outcomes, and are told he’s likely to be in and out of the hospital several times in the next year. Visit one (two, three) is over after having some internal bleeding, but all is well for now.

We are told that each transplanted patient is different. Some are up and ready to get back to work and life within months, others are plagued with infections or complications such as stenosis or thrombosis of the hepatic artery or portal vein, bile leaks, stones or obstructions, diseases or recurring infections. Even liver cancer is still a concern. But as always, we hope for the best of outcomes.

Our fundraiser is still going strong for items that are not covered by insurance. These include reimbursement for mileage back and forth to the treatment center 100 miles away, tolls, parking and food, hotel stays, and medical equipment or preventative measures to protect him since he is on immunosuppressants for life. But LIFE is the biggest gift and we are taking on all challenges!

Please read on for Rob’s story from the start…

> Since 2021, Rob has been dealing with end-stage liver disease and Stage 3B kidney disease.

> After suffering an Acute Kidney Injury (AKI) in May 2022, he lost significant functional capacity both physically and mentally and has been unable to drive, work, ride his bike and more.

> He has Chronic Hepatic Encephalopathy (brain swelling) which causes brain cell death.

> He has esophageal varices (enlarged portions of the portal vein) that require repeated surgeries to “band” the blood vessels. He’s had six of these surgeries so far.

> Ongoing monitoring and care include CTs, MRIs, ultrasounds, surgeries, specialists, blood work and an entire cabinet of medications.

> Rob has been placed on the UNOS TRANSPLANT LIST with UMass Memorial Medical Center in Worcester, MA.

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This is how we knew something was wrong…

Rob had fallen on the floor, toppling over a kitchen chair in the process and quite literally, he couldn’t get up. Suddenly, his legs didn’t work. He couldn’t push up with his hands. He just laid there. Eventually I got him into a chair and noticed he was slurring extensively, staring vacantly without seeing anything, incapable of forming a sentence, and laughing at his own failure to communicate. This was not my husband.

Acute kidney failure was the diagnosis at the ER, and he was admitted for 5 days. This was the tip of the iceberg, because Rob came home a different person. He had little balance and was uncoordinated, needing a cane. He had severe anemia and fatigue, taking 3+ naps a day. He could no longer enjoy his favorite hobby, mountain biking. Formerly able to walk our two dogs, he didn’t have the strength. Even taking the stairs to let them out was not recommended without assistance. Nurses came to our home several times a week. Driving was out of the question.

Games, walking and normal activities with our son Connor (17 year old high school senior), and maintaining the yard and home suddenly were not possible. Showering had to be done with assistive equipment and an adult close-by. He can’t drive due to mental confusion and peripheral neuropathy in his feet. His world turned into a balancing act of the salt, water and proteins he ate and the number of times he used the bathroom to expel toxins his liver couldn’t filter. It was a minute-by-minute struggle to not fall and cause himself further injury and he’s had a dozen falls since the beginning of all this.

~~~~~~~~~~If you would like to help with Rob’s medical expenses, please click on the Donate button above, but please read on for more~~~~~~~~~~

We hoped this change in abilities was going to be temporary, but sadly, it was not. He could no longer work as a Project Manager for his company that he’d been with since 2011, where he interacted with a team and managed top-tier customer accounts like Waste Management and AAA Motor Services. All the subsequent diagnoses and bodily failures were crushing; he is 10-20% of his former self in many ways. His liver is functioning at 5% and his kidneys are Stage 3B (5 is kidney failure).

There is hope. Being placed on the UNOS list means many things – on one hand he could get a liver/kidney transplant and if all is successful, he could live a good life on anti-rejection drugs, steroids, the proper diet and avoiding activities to keep away from infection. Or, it could mean years of waiting and living an “in limbo” lifestyle where you have to be ready and packed to leave your home, family and our dogs at a moment’s notice for a very serious and dangerous transplant surgery. This is where we are, in April 2024.

We’re asking for help to cover medical expenses as he goes through everything this disease entails. We were able to obtain private commercial insurance (thank you Affordable Care Act) but with that comes the usual monthly premiums, deductibles, co-pays, coinsurance, out of pocket and expenses not covered.

In order to obtain Long Term Disability to replace his paycheck, he was forced to file for SSDI which he was awarded in August 2023. Imagine this at 53 years old! As you are correct to assume, this doesn’t nearly cover life expenses let alone medical expenses.

We hope that reading this today, you will consider making a small tax-deductible donation to cover these extra costs. We’ve chosen to partner with Help Hope Live, a non-profit for those in need of critical care. No cash money is paid to us – they put any monies received into escrow, and when we have medical expenses that aren’t covered, they will pay them or reimburse us after the fact, out of donations received. Working with a non-profit also means that all donations can only be used for qualified expenses, so donations aren’t being used for “whatever”, but are targeted to help only with his medical needs.

Whether you can, or cannot donate at this time, we hope you can share Rob’s story with your friends and family on social media, word of mouth or any method. The link at the top of the page works or you can also use www.help-rob.com. The more we talk to people about transplant and organ donation, we realize how many others are facing the same situation in their lives. It is somewhat of an invisible diagnosis that no one talks about.

Please, help hope live for Rob, myself his wife Kara, son Connor, and all his friends and family that are rooting for him every day. Please click on the Donate button today.

We thank you for your consideration,
The Jankowski Family

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Check out Rob’s pics – through it all he’s smiling, just like his Dad “Smilin’ Bob”.

From Help Hope Live:

Family and friends of Robert Jankowski are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with transplantation.

Robert has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Donate button.

For more information, please contact Help Hope Live at 800.642.8399