THIS MESSAGE WAS RECEIVED FROM MOLLY'S MOTHER.
Hi, there!
I am happy to update Molly's story - I may forget things as it is quite a story. Hopefully, my writing is delicate!
Molly was transplanted with small bowel and colon on November 6, 2015. The transplant was completed over two 15 hour surgery days. She was slated to leave the hospital after an incredibly fast recovery two weeks from the second surgery, but things took a turn for the worse quickly. Molly had increasing pain and dangerously high fevers. It wasn't rejection even though she had issues with that, too. After suffering for a few weeks, the team operated, again, and found she had a devastating cavity infection. They noticed that the donor lymph nodes had become quite enlarged and very hard - they feared a transplant induced Lymphoma but it was not- which the doctors had never seen before. She has since lost all of those lymph nodes as they have almost completely disappeared. Another uncommon complication she had is something called Mesenteric Sclerosis. This is a cast like scar tissue that forms over the mesentery, which is the blood and nutrient supply to the small bowel. It can happen from trauma or is sometimes seen in patients from countries where the staple meal is rice.
I have these thoughts and no one challenges them as Molly's complications are very rare and she is the first of her health issues to be transplanted, so I am lucky the team listens to my theories/questions. Now I realize I am playing "arm chair doctor" but in my defense, I have a lot of experience and knowledge regarding these issues and my girl. I believe the trauma of transplant sparked the sclerosis as Molly does not scar due to the Ehlers - Danlos Syndrome. Mesenteric Sclerosis is a chronic, very painful issue that can only be removed surgically...but, in Molly, grows back within a few weeks. It has been removed only twice and only because surgery was required for other issues. The last time it was removed, the doctor said it had become so hard, he removed bone from the mesentery. Image your intestines being encased in a plaster shell... Molly has had over 30 gut surgeries so she will have to wait until transplant to have it removed as surgery is proven harder to heal. In the meantime, she is in increasing pain. Hopefully, this will not occur with the next transplant!
After this third surgery in 5 weeks, Molly's kidneys suffered. She gained over 40 pounds of fluid weight resulting in significant skin damage. She has always had stones, but now has Chronic Kidney Disease. Luckily, it is stage three so no need for dialysis yet. Unfortunately, this is the nature of the beast for some intestinal transplant patients and we figured this might happen. I am quite vigilent in giving her IV fluids which helps in between kidney injury episodes.
Molly also still suffers with chronic nausea and vomiting. The team had hoped that by transplanting the small bowel and giving her a colon, this would "jump start" her digestive tract and these symptoms would get better. Even though it was discussed she would receive more organs the first time around, the protocol is to transplant the fewest organs for the best results. One of the surgeries she had here in Cleveland was to reroute stomach contents bypassing the duodenum in hopes of relieving symptoms. This has not helped. It doesn't matter if she eats or not, the nausea and vomiting literally occur day and night. She is even awakened in the night dealing with this...
The doctor has a thought or two regarding Molly suffering since transplant. He is thinking that she may be in a different type of rejection. No one has had an intestinal transplant having suffered with Indeterminate Colitis and EDS Type III so we do not have any history to compare cases. She is also only the third patient to receive the rectal pull through. There is probably permanent nerve damage due to the very bad cavity infection immediately post transplant that went on for a few weeks. Hindsight being 20/20, Dr. Kareem thinks he should have replaced Molly's stomach, duodenum, both intestines and pancreas the first time.
My sweet girl may also be listed for a liver. She has fatty liver probably due to the years of IV nutrition and meds. She has Encephalopathy which causes confusion, memory loss, lack of concentration, extreme lethargy and dementia like symptoms. It is most likely due to a high manganese level that the liver is not filtering. The deposits settle in the brain and may or may not dissipate.
We are very hopeful that this 5 or 6 organ transplant will allow Molly a better quality of life even if it's just for a short time. We are very realistic in regards to the outcome but our hope and belief in the doctors keeps us positive about her future. I had an interview at The Cleveland Clinic and it looked very promising, but the job was given to someone already working on that floor. When the team heard I was looking for work, I was nicely told Molly is too sick for me to work. She has declined greatly the last three weeks :( and now weighs about 100 pounds.
In the meantime, Molly -when she feels up to it- and I keep busy volunteering here at The Transplant House of Cleveland and mentoring patients and caregivers. I am also one of a small group working on a caregiver's handbook for all the transplant teams at the clinic. I was very honored to be asked to help write this important handbook!
I know I continue to thank you and the Rotary members for helping my family but we really do appreciate any and all help. We are also tremendously thankful for our community and The Transplant House. I am not sure how we will financially get through this next transplant but I must believe we will land on our feet somehow. Please feel free to reach out to me anytime, read my blog on CaringBridge.net and check out The Transplant House of Cleveland's website. I may even be able to send a picture or two of Molly if you like! If anyone from the Rotary would like to ask questions, I am happy to respond! I hope you enjoy the rest of Maine's summer...we sure do miss our little slice of happiness called home in Eliot!
All my best,
Jenna