Our Story

Doug is 58 years old and a 3-time cancer survivor. Back when Doug was 16, he felt a lump in his groin and his family doctor thought he had a hernia. Doug didn’t think it was a hernia and pushed his parents to have him looked at further. That lump turned out to be a very rare lymphoma – histiocytosis X. Luckily, Doug was living in Northern NJ and was fortunate enough to be treated at Memorial Sloan Kettering in NYC. After 18 months of treatments that included surgery, chemotherapy and radiation, he was “cured”. 

Fast forward to 2004, Doug was starting to battle with various GI symptoms that included nausea, vomiting, diarrhea/constipation. Luckily, he was in the medical field as a radiologic technologist and didn’t ignore the symptoms and sought out care right away. A Cat Scan revealed that he had a golf ball sized calcified mesenteric lymph node that was wrapped around his terminal ileum and also a tumor in the colo-rectal area. The tumor was a side effect of all the radiation he had when he was 16. (More about that later.) Again, he was fortunate to be living near Philadelphia and off to University of Pennsylvania we go. We had just purchased a new home, had a new puppy, and Doug was having surgery right before Thanksgiving. The surgeons were confident they removed all the tumor, and he started on only chemotherapy because he had already received his lifetime dose of radiation when he was 16 and couldn’t have any more. Doug was only able to complete 3 of the 12 sessions of chemotherapy due to his body having a memory effect from the prior chemo and his body was unable to tolerate it. No problem we thought, until we realized that with the removal of 1/2 of his terminal ileum (the part of the small bowel that absorbs your fats) his diet had to drastically change. He figured out how many grams of fat per meal he was able to eat in order to keep him out of the bathroom. If he ate too much fat, he wasn’t leaving the house.  

Doug lived with this strict diet for years, until one day in 2021 he woke up with the most excruciating abdominal pain and nausea. We go to the ER, he gets all the tests done and they find that he has a mass at the Ampulla of Vater (a spot where the bile ducts release their secretions into the intestines to aid with digestion). Luckily the mass is not cancerous but needs to be removed. Once this was removed, stents were placed to keep the ducts open until that area had time to heal. He would go back about every 4 weeks because they would get clogged, cause him pain and they would get changed. Finally, a metal stent was placed in the main duct and that was good until— the stent fell out! The stent fell out and traveled to the end of the small bowel and got stuck there. The GI team tried their best to get it, but it was unretrievable. So now they called in a colorectal surgeon. We thought that this surgery was just going to be simple, just go get the stent out. Doug talked at length to the surgeons pre-op. After an 8-hour surgery, the surgeons told us he had so much damage to his bowel (radiation enteritis) from his prior radiation, that they had to remove the rest of his terminal ileum and his whole right side of his colon. We were not prepared for that. Doug stayed in the hospital for 2 weeks after that and when he finally came home, he never recovered. Because so much of the bowel was removed, he was no longer able to absorb his nutrients. He would watch everything that he ate, ordered every low-fat protein shake he could try, but nothing helped. Again, our GI team sent us to University of Pennsylvania for a second opinion. Their only recommendation was to look into a bowel transplant. We said “bowel transplant?” We didn’t even know that was a thing. 

So now it’s January of 2023 and he is getting worked up at Medstar Georgetown for a bowel transplant. The team there was beyond amazing! Dr. Subramanian & Dr. Matsumoto looked at absolutely everything! They got Doug on IV nutrition (TPN) that allowed him to stop eating regular food, gave him the nutrients he needed, added 15 pounds and helped to get him off the couch. If you live in my neighborhood, you probably saw Doug walking the dog and he was so happy to have a little freedom. But long-term TPN is not a cure, so the doctors talked to us about bowel transplant. He basically had no other option as the bowel he had left had so much radiation damage, it would eventually not work and he needed a new bowel. He did so much research, found others that had successful bowel transplants and decided this was what he had to do.

Dr. Subramanian called Doug on Thursday 6/8/23 to say he was officially on “the list”. Now the waiting begins. What we were not prepared for was the phone to ring only 3 days after on 6/11/23 that they had a donor! We had to pack up and leave within 30 minutes to head for Washington, DC. Doug received his new bowel on 6/12/23 and is currently in the ICU. We are so thankful for this gift and know that the road ahead will be a rough one. Once Doug gets out of the hospital, we need to stay local to DC so we can go back to the hospital multiple times a week for testing to make sure he is not rejecting the new organ. 

Update : 

7/27/2023 After 47 days in the hospital, the long awaited discharge day and next chapter starts today. Now Doug’s care is in my hands. 2-3 visits back at the hospital for scopes & clinic visits, medications to manage, tracking daily bp, blood sugar, ostomy outputs and a very strict post transplant diet. So glad he’s doing so well and we will make the best of our stay in DC but hoping to be able to come home soon. ???? #boweltransplant  #organdonation www.cotaforteamdoug.com

8/3/2023 Clinic visit day. All staples and stitches removed (Ouch ????) Visiting RN came earlier to draw labs and Doug’s PICC line was leaking so here we are in IR so he can get a new one. He sure is keeping me on my toes. ????#boweltransplant #organdonation #cotahope www.cotaforteamdoug.com

8/8/2023 Doug is back in the hospital with a bowel obstruction. Hoping the transplant team can fix it without surgery. ???? hoping this statue on his floor is a sign. ???? #boweltransplant #OrganDonation #COTAHope www.cotaforteamdoug.com

8/10/2023 Doug is still in the hospital but somehow staying strong. Such a balancing act to manage all the side effects from anti rejection medications. Now, he is dealing with a bladder infection, EBV viremia & the continued bowel obstruction. Transplant team is still hoping it will decompress with bowel rest. Send all your prayers and good vibes. ???? #boweltransplant #organdonation #cotahope www.cotaforteamdoug.com

We are super hopeful that Doug can get back to the things he loves: getting to the beach, going fishing, family trips back to Aruba, going out for walks with our dog Vikki and just basically having freedom to leave the house. He has missed so many things with the kids and he just wants to get back to being “normal”. 

Thank you for taking the time to read his story.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.

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