Covering Expenses for Rob Jankowski
(husband of Kara Shockley Jankowski), who needs a Life-Saving Dual Organ Transplant
> 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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
To follow updates please click on “Subscribe”
To read testimonials from others, please click on “Impact”
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
Updates (13)
May 12, 2024
Rob is 2 days post transplant and doing well. Yesterday, he got up and stood with a walker, and marched in place! Today he's eating pancakes and will likely be moved out of the ICU and into a regular room. His kidney are taking a hit so we're watching that closely. That's it for now.
Happy Mother's Day to all the moms out there!
Kara
May 9, 2024
THE DAY FOR ROB IS HERE! Today we drive to the UMass Memorial Medical Center in Worcester, MA to get ready for ROB’S LIVER TRANSPLANT!!! It is scheduled for 5am tomorrow morning.
We really didn’t think this could happen, some people wait years and years, but we were very lucky to have received a DIRECTED DONATION from a very dear friend of mine whom I’ve had the pleasure of knowing for almost 20 years. We are so terribly sorry for her unimaginable loss, and at the same time in awe of her strength and compassion during her and her family’s ordeal. You know who you are girl, THANK YOU!!
In the meantime and especially tomorrow morning, please keep Rob in your thoughts as he undergoes this surgery. According to the Cleveland Clinic:
“Liver transplant surgery is a major operation that will take between six and 12 hours. The length of the operation also raises the risk of possible complications, both during and after the procedure. Afterward, you’ll be under close observation for at least 24 hours, and you’ll stay in the hospital for one to three weeks after that.”
So, we are entering the unknown. Please wish us luck!
April 17, 2024
Hi Friends,
Just a quick update to say happy spring to you and yours! Newest update here is that I edited the main story at the top of the page to reflect where we are currently. Essentially, we are in the waiting stage of this process. For the most part, lab numbers are stable, with minor medicine adjustments here and there. Rob has already reached his $7,200 deductible this year, which is a good thing (?), and some of our bills have been reduced or even eliminated through financial aid and help from all of you. We have so much appreciation for you, even for something as small as a $50 mileage reimbursement for going to doctor appointments. Every little bit helps, especially with medications and we thank you.
For the family update, Connor has been accepted and has chosen to attend Southern New Hampshire University (SNHU) in the fall. Little did we know he'd be going to a school referred to as "snuu" pronounced like Drew. Hmm. In any case it's an exciting and tense time dealing with financial aid and talking about mini-fridges.
We're tired all the time but spring is helping with the sun's warmth and the return of the birds at the feeder. We're looking ahead to Connor's 18th in May, his senior prom, and graduation on June 6th. It goes so fast they say and it really, really does.
Wishing you all the best, and we'll keep you updated.
Thank you!
Kara, Rob & Connor
March 3, 2024
Well it was a false alarm. UMMMC said this happens often; they have a liver but they need a back-up person in case the #1 person can't do it for this that or the other reason. Rob was actually way down the list but due to various criteria he got up to #2. But that's only for that particular liver. Next time, there will be a different set of criteria. It's really complex how they make matches.
So, at least we had a trial run of packing really fast! Next time we'll have clothes ready. But boy, waiting for that call was tough, especially overnight.
Back to the usual waiting. Thanks for all your support!
Kara
March 2, 2024
THIS COULD BE BIG or it could be nothing. It's certainly got our hearts racing. This afternoon we received a call from UMass Memorial Medical Transplant Dept saying they'd like Rob to be a 2nd in line for a transplant!! Or the back-up or whatever they call it. So they asked a lot of questions, had him take a COVID test (negative) and said to wait for a call!
This means either a) they call and say never mind b) they say come on down as fast as you safely can c) we wait and at hospital and it's a no-go, so we call it a "practice run" or d) he gets a transplant!!
I have ZERO idea what all the criteria is going on here with the donor, the first recipient or Rob and why he's potentially next. I'm completely confused and still in shock. I packed way too much stuff so I think I'll go through it now that we're waiting. They said maybe tonight or even in the middle of the night we could get a call.
So that's it for now! As always, thank you for your support, your donations (even you anonymous ones!!!) and for reading these updates. We love reading your responses as well.
I'll keep everyone informed!
Kara
December 29, 2023
Dear Friends and Colleagues,
We wanted to take a minute to update you on how things have been going with Rob, and how much you’ve helped us exactly when we needed help.
The ups and downs of this year were really humbling. Excited to be on the UNOS list, then crushed that we had to change not only insurance companies but go through evaluation with an entirely new transplant team and hospital, leaving Rob’s UNOS status as “inactive” from June to November.
Thankfully his last hospitalization was in April, so I think we’re doing a good job managing the various factors that go into his every day to keep his liver, kidney and blood numbers among others, in the stable range.
A very high point this year was learning that Connor was accepted to his university of choice, and that Rob was here for it. That sounds awful, but the prognosis given back in June 2022 was so concerning we didn’t know if he’d see Christmas. Now he’s seen two since then!
Thanks to you, we’ve been able to cover his hospital/specialty doctor bills of $1987, reimbursements for travel, prescriptions and copays of $901, and one month of an Rx that costs $337/mo.
Sadly, we are entering a new year with a $7,100 deductible facing him and are hopeful that we can cover some of this with our Help Hope Live fund.
This is the time of year when people are maximizing their tax deductions, and these are fully deductible to the extent of the law and distributed only for authorized medical expenses. If you can remember us in your giving, we would appreciate even the smallest donation of $10 or $20. You can donate at www.Help-Rob.com or helphopelive.org
THANK YOU to everyone who has donated thus far. You are AWESOME and it is so heartwarming to have your support.
With love, Kara, Rob, and Connor
December 10, 2023
Hi Everyone - THANK YOU to everyone who supported our fundraiser for Giving Tuesday! It went very well and easily allowed us to submit his Procrit monthly bill of $337 for direct payment to Carelon Pharmacy. This is a medicine to keep his hemoglobin up, which makes red blood cells to bring oxygen to his brain. Obviously this is super important and something he can't stop taking. You all played a part in his ability to get this necessary medicine!
I like to be cheery with good news but that's not always possible. Rob is not feeling well. All his blood numbers are "fine" and his MELD score is 17, but he feels awful 24/7. Mornings he wakes up with full-body pain characterized as a 5 or 6. Nausea is there at least half the time. He's gaining weight with no rhyme or reason. Yesterday he helped bring a small pile of cardboard to the dump, and just that caused dizziness, nausea and the biggest wave of exhaustion leading to a 2 hour nap. The frustration he has that he can't "do" what he wants to do is ever-present.
But the worst part has been his breathing.
He's had exercise-induced asthma for years, just a puff or two of Albuterol after a ride (mountain bike) for example. But now, he's using 20-30 sprays A DAY just to keep his airway open and subside the coughing fits. He just took a pulmonary function test and while we can't understand the numbers, online we could see they were all lower than normal ranges. He's already had a chest CT and nothing was found, so I'm thinking he just suddenly has asthma really badly. New meds maybe? A nebulizer? I have no idea until Tuesday, when he sees yet another new doctor, a pulmonologist.
After that, he is having a bone density test and follow ups with urology, endocrinology and dermatology. THEN he has a break for the holidays. Phew!
Connor is having his (2) wisdom teeth out tomorrow 12/11, AND drum roll here.......... he was accepted to and plans to attend Southern New Hampshire University (SNHU) representing the freshman year class of 2028!!!! There's a lot of shock and nerves but we have lots of time to prepare. We're so proud of him and his accomplishments, especially with Montessori Education which he'll continue at University.
We wish you all a very Happy Holiday season and the best for 2024. Hopefully I'll have a breathing update before then!
Hugs from Kara, Rob & Connor
November 21, 2023
Good Morning! Just a quick update to let you all know that Rob has been accepted into the UMass Memorial Medical Center Transplant Program! This was a necessary step toward eventual transplant due to the insurance change and subsequent change of transplant team. The center can also request that his time waiting (since June) be added to his time on the list now, which is excellent news!
Rob's transplant health status is stable at the moment, but he's having a really hard time breathing and has to go through some pulmonary function tests. He's been using 16+ sprays of Albuterol at day which is way too much, and still coughing and wheezing all day.
If it's not one thing it's another unfortunately.
Right now it's a week until our big push for Giving Tuesday! We hope you can remember Rob during this time of giving and obviously a HUGE thank you to those who have donated!
Between midnight on Tuesday, November 28 and 3 a.m. ET on Wednesday, November 29, Help Hope Live will cover the credit card fee for all online donations made in honor of any Help Hope Live client - Please consider donating or sharing Rob's link to your social networks. Thank you :)
Have a very Happy and Healthy Thanksgiving.
Kara, Rob and Connor
October 16, 2023
Good Evening everyone,
I'm here to report that we had a facinating meeting with Dr. Mehta at UMass Memorial Medical Center. This was the First doctor Rob has seen that has questioned the idea that "everything comes from the liver". Meaning, if you're in liver failure, it's causing all your symptoms. We haven't ever heard anything But this the whole time. He really opened our eyes not only because he was looking at Rob as a whole person, not a person with a diseased liver, but someone with other issues that needed addressing as well. Questions he asked...
"Why are you using a cane?" I don't know, because ever since I went to the hospital in May 2022 I had no balance and was dizzy and unstable all the time and was told that is classic liver disease.
"Why do you have neuropathy in your feet?" We were told it was idiopathic or could be caused by drinking. "Did anyone ever address the crushed disc you have in your back?" NO. "Because that can cause neuropathy".
And so it went. I feel like Rob is finally being SEEN and not pigeon-holed into a single diagnosis. He even questioned that his kidney disease was secondary to the liver disease.
A total eye-opener. And to think we haven't even gotten into the fact that Rob was exposed to PFAS and PFOA's for 2 years, 5 days a week drinking water from the wells of the Pease Tradeport (former air force base and training area using these "forever chemicals" in their fire suppressant foam that went into the groundwater).
Right now we are waiting for our November appointments with the entire transplant team, a chest CT and a full torso MRI. Rob has reached his $5,200 deductible and is nearing the $7,200 family out of pocket limit. Since August 1. It's ridiculous and quite scary since we have to start over again in January.
That's the news here. I hope you and your family are well and enjoying the fall weather, the craft fairs, pumpkin carving and all your favorite traditions.
Kara
September 21, 2023
First order of business - THANK YOU to everyone who has donated to assist Rob with his medical bills. Extra special thank you to Andrea Fachini and Pam Christensen for providing their artistic creations and services for auction to benefit Rob and Help Hope Live. If anyone is interested in learning how to help with fundraising efforts, please let me know. Your time spent, your products or services, materials, promoting and anything you do for a fundraiser is all quantifiable and is all TAX-DEDUCTIBLE. Please don't hesitate to reach out, especially as we approach the season of giving, Giving Tuesday, and many arts and craft fairs allowing booths for non-profit organizations.
*MAJOR UPDATE*
After a lengthy process full of ups and downs, countless phone calls and lots of waiting, the verdict is in: Rob's new insurance carrier (Anthem BC/BS) WILL NOT cover any transplant services with Mass Gen. So he is forced to establish himself with UMASS Medical Center in Worcester, pending insurance approval for in-network services. It's been a sad day here as we received a denial letter from our third and final appeal.
All this is because in May of this year, Anthem has removed Mass Gen from their list of "Blue Distinction Transplant Centers". MASS GENERAL HOSPITAL, who is #8 on the list of top hospitals in the US according to US News and World Report 2023. UMASS didn't even make the list. Anthem also let go of Lahey Clinic, Tufts, Beth Israel and several others.
Rob is literally a puppet on a string, and this has nothing to do with his illness - this is politics and the almighty dollar. I won't get into all that but clearly we are caught up in it with no say in the matter.
On a positive note, Rob's bloodwork, which he gets bi-weekly if not more often, has held steady and his last emergency hospital visit was April, so he's on a good stretch. There's still nothing they can do to ease the exhaustion and pain, but he's getting by.
Next update soon. Sorry for the delay this time.
Kara
September 9, 2023
Well, we got the results of the fungal test and YAY nothing there. Which means as soon as the team meets, he should get the go-ahead to be fully active on the UNOS list!! Rob did well with his last EGD procedure and he'll keep having them every 2 months. Right now it's making sure of a careful diet and water intake to keep his system balanced.
We wanted to take this time to say THANK YOU to everyone who has donated thus far. We have already sent Help Hope Life over $700 in bills to pay for us. This fund is a serious life-saver financially and we are ever grateful. That's it for today but I'll keep everyone informed. Thanks!
August 17, 2023
Still waiting on the fungal culture for the sinus surgery, but recovery has been much easier than expected. Still doing sinus flushing. I told him it was like a spa visit for your nose. Lavage or something like that? Trying to keep it light over here.
Monday Aug 21 is another (3rd) Esophagastroduodenoscopy with banding of the swollen veins.
August 1, 2023
July 28 - Endoscopic Sinus Surgery. Required to be "active" on the UNOS list. Procedure Findings: Deviated nasal septum, bilateral inferior turbinate hypertrophy, extensive polyposis left nasal cavity involving the maxillary sinus, ethmoid sinuses, and frontal sinus. Mucopurulence within the maxillary sinus. Polypoid degeneration of the ethmoidal cells and maxillary sinus.
Results: STAPHYLOCOCCUS AUREUS Methicillin sensitive by PBP2A test Heavy Growth This isolate is presumed to be clindamycin resistant based on detection of inducible clindamycin resistance. Clindamycin may still be effective in some patients.
EEK. So not MRSA, but a close relative. On antibiotics, follow up with surgeon August 4.
Photo Galleries (1)
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Guestbook
May 10, 2024
Will be thinking of you bright and early tomorrow. Amazing news.
Aaron Wykoff
May 9, 2024
Prayers are with you both as you begin your organ recipient journey!
Lisa Britt
April 14, 2024
Sending well wishes from the Wykoffs. The next one’s yours - so close.
Aaron
March 20, 2024
Sending our thanks and gratitude to all the family and friends who are helping you, Rob. Many hopes and much love,
Donna and Bob
January 19, 2024
Sending love and best wishes your way, Rob.
Samantha Marone
January 18, 2024
Love you Rob
Tim Miller
January 18, 2024
Thinking of you and your family Rob.
Nate McManus
December 24, 2023
Kara and Rob, we wish you both the best of health and hope Rob can receive the medical attention he needs. Best wishes for a very Merry Christmas and a Healthy and Happy New Year.
David Shockley
November 28, 2023
As the recipient of a heart transplant, I wanted to pay back a small portion of all of the support I received while waiting for my new heart 32 years ago.
Lisa Britt
November 28, 2023
Thinking of you all and sending positive vibes! Love, The Gallaghers
Amy Gallagher
November 28, 2023
Praying for you Rob!!
Jessica Gentile
November 23, 2023
Glad to hear you’ve been accepted, Rob. Wishing you, Kara, and Connor a wonderful Thanksgiving.
Aaron Wykoff
November 9, 2023
With love - Gallaghers!
Hugh Gallagher
September 18, 2023
Blessings to this family on your journey of hope and healing!
Tammie Lesesne
September 17, 2023
Rob and Kara - so happy to read this update. I think about you every day. Sending you strength.
Aaron Wykoff
September 16, 2023
Wishing you all the best from Little Raincloud Leather ❤️❤️❤️
Andrea Fachini
September 13, 2023
Prayers and positivity to your family ❤️
Lisa Chisholm
September 10, 2023
We are keeping you all in our hearts and you deal with too much heartache!
Dorene/Ron Lengyel
September 10, 2023
You’ve got this! Sending the whole family healing and healthy vibes.
Laurie Carrera
September 8, 2023
Praying for you, Rob. ❤️
Stephanie Thomas
September 5, 2023
Saw your post in the Buy+Sell+Trade PLG in one of the albums. Prayers for healing and a match for you. Stay strong! God Bless you.
Donna Hundl
September 2, 2023
Sending good vibes to you and your family, Rob & Kara!
Jill Black
August 30, 2023
You and your family are in my thoughts. Hang in there man.
Prayers sent.
Mark McDonald
August 30, 2023
Stay strong Rob!
Anonymous
August 25, 2023
Thoughts and prayers to you and your family.
Caroline Jankowski
August 24, 2023
Hoping for a successful recovery, Rob! You got this!
Chris Bors
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