Mar 11, 2019 Latest post:
Mar 20, 2020
Dave was diagnosed with both Multiple Myeloma and Amyloidosis in October 2018, but the journey to diagnosis (included down below) wasn’t easy. We are now preparing for the most challenging phase of the journey, the Stem Cell Transplant.
We have been working with a wonderful team of doctors and nurses at the Jewish Hospital in Cincinnati. Dave has dealt with this process with humor and a positive attitude. He has been incredibly strong, and we are so proud of him for it. We could not have it done all of this without the love and support of all of our family and friends. This truly takes a village!
People ask what they can do for us, positive thoughts and lots of prayers! We appreciate your support and words of hope and encouragement. Thank you for visiting!
The Bookman Family
Our journey to diagnosis...
It began at the end of 2017, nine months after double bypass surgery. Dave started noticing he wasn't feeling quite right. He was tired and had a very raspy voice. Dave thought the fatigue was due to lingering recovery issues with his bypass surgery even though he felt worse than he did right after surgery. He saw a specialist at The James for his voice as he was having a difficult time speaking and it was becoming increasingly difficult to manage his daily life. The doctor told Dave that he had Vocal Cord Atrophy, possibly due to the trauma from his emergency surgery, although he did not really have a clear reason as to why Dave would have the vocal cords of an 80 year old man! The doctor recommended a Vocal Cord Implant and assured him that this would resolve the hoarse voice issue.
When Dave went in for his surgery pre-testing, he was sent to the ER at OSU due to symptoms of a heart event. The ER discovered mildly elevated levels of troponin and said he was experiencing a mild heart attack. He was admitted and scheduled for a cardiac cath as doctors were convinced it was due to further blockage in his arteries. Everything appeared fine and he was told he should see his Cardiologist when he went home. At his follow up appointment a month later, the Cardiologist who had seen Dave in the hospital asked him if anyone had ever told him he had Diastolic Heart Failure. We were both shocked and more than a little disturbed as this was the first time this had been mentioned, and so casually! The doctor sent us back to Cincinnati and asked for a follow up in six months. Anyone who knows us, knows we don't do well without answers. Dave was told after his heart surgery he had the heart of a 25 year old, so we scheduled an appointment with a cardiologist who specialized in Heart Failure. He confirmed the diagnosis but after many tests said Dave's numbers look good, he should just exercise more. (This is one of those times where it is a VERY good thing he did not listen to the dr!)
We were unsure how to proceed and tried to continue on with life, but Dave grew increasingly limited in his ability due to extreme fatigue and pain.
In September, Dave began experiencing GI issues which led him to have an Endoscopy and Colonoscopy. Thank Goodness for Dr. Goh, Dave's GI Specialist, who didn't feel comfortable with what he saw during the tests. He told us it was probably an infection but ran multiple biopsies to confirm.
The next day Dr Goh called Dave and told him that he had Amyloidosis. What he was seeing on his intestines and stomach were Amyloids, misfolded proteins which are transported through your blood and adhere themselves to multiple organs, most commonly heart, kidneys and liver, causing them not to function properly.
Armed with Google, we began a search for details surrounding the diagnosis...bad idea! The prognosis was hopeless and left us depressed and anxious, to say the least. Fortunately, we were referred to Dr. Girnius, an Oncologist who specializes in Amyloidosis the next day. He acknowledged that the information online was outdated and quite grim, but advances have been made giving us hope. He reviewed Dave's medical history asking him questions which pinpointed all of the strange symptoms Dave had been experiencing for the past year. He explained that Dave had amyloids on his heart, GI Tract and Vocal Chords but had very limited in his kidneys... a wonderful thing!
Dr Girnius felt that Dave would do very well with treatment and that he felt confident that he could get Dave to the Stem Cell Transplant phase. He told us that the procedure would be done at Jewish (deja vu, where Dave had his bypass surgery) at their renowned Transplant Center. The treatment plan mirrored the treatment for Multiple Myeloma, 16 weeks of chemo followed by a Stem Cell Transplant- the gold standard in treatment.
Thanks to our relationship with the wonderful folks at The Leukemia and Lymphoma Society who we have been fundraising with for the last 18 years & our dear friends with excellent contacts, we had amazing partners to help us navigate the first, difficult step of finding the right doctor to guide us through this journey we were facing. Even though Dr Girnius was very knowledgeable, we chose to go with Dr Essell, Diane and the team at OHC (Thanks Tom, Vinnie and Julie!) Their team has been the best during this process!