I who was born June 17, 1988 with several birth defects that affected the mid-line of my body known as VACTER syndrome. Each letter represents a different part of the anatomy and of the five letters, I have four of the anomalies.
In my early years of life, I had four bowel surgeries, tracheal surgery, four open heart surgeries, and over 10 other heart related procedures.
January 21, 2020
I know it has been quite a while since my last update but I wanted to bring everyone up-to-date with what has been happening since November. In late November, someone I know who was listed for transplant for 2 years got a call that he was inactivated from the transplant list. This was upsetting and shocking to his family and to us. I contacted Penn and was told that I was still listed and my status was the same. It was a relief! However, in early December I got a call that the doctors wanted me to have a CT scan of my chest. When we investigated further we found out that patients were having issues with something called collaterals during the transplant process. Collaterals are extra blood vessels that form to help provide a blood supply to my heart because of the way my heart functions. It is normal for all heart patients like me to have collaterals but the doctors have determined that having too many collaterals significantly increased the risk of hemorrhaging during the transplant. I went for the CT scan in early December and had a follow-up appointment shortly after that. The doctors wanted to take a look at my scans from last January as well as the new one to determine the level of collaterals. We heard from my transplant cardiologist on January 7th and was told that the number of collaterals that I had were significant. They feel that the risk would be too great to move forward with the transplant and a decision was made to deactivate me from the transplant list. This was beyond devastating to both me and my mom! We were speechless and have been trying to process this information ever since.
We have found out that there are only a couple of other hospitals in the country that would consider me a candidate for transplant because they have been successful in handling the collaterals and significantly reducing the risk of hemorrhaging. The hospitals are Vanderbilt in Nashville, TN and UCLA in Los Angeles and Stanford a little south of San Francisco. In all of these cases, I will need to go through the entire evaluation process again and the approval process. However, the first step is to have my records/test results sent to these hospitals and see if they will invite me out for evaluation. This would consist of about a week at each location, testing, meetings, etc. If I were to be listed at one of these hospitals, I would need to live there once I am listed and for at least one year post transplant.
All of this is very overwhelming and the feelings that are going on are very hard to put into words. I have been asked that if these other hospitals have a way to manage the risk of the collaterals, why doesn’t Penn do the same thing? We have asked that question in so many ways but keep getting the same answer. They do not believe that there is a way to significantly reduce the risk. Of course, that will be one of the number one questions we ask when we talk to these other hospitals. I’ve also been asked, “Isn’t there other hospitals that are closer that will do the surgery?” Because of the my complicated anatomy, these are the only hospitals that have successfully transplanted patients like myself.
Since I’m am no longer actively listed and am feeling ok, I can travel a little and I’m trying to figure out if I want to go to the Baseball Hall of Fame or the Football Hall of Fame for a long weekend. I’ll need to do it quickly before I hopefully will travel to California for further testing and evaluation.
I want to thank everyone for the love and support that has been shown to me and my mom This new development was not expected at all and has been hard to process. I need your prayers more than ever. I will keep you posted as we know what the next steps are. Ross
August 29, 2019
I have now been listed for my heart/liver transplant for one month! We anticipate the wait to be at least several months to a year or more; however, I’m doing pretty good. The fluid problems I experienced early in the year have been resolved and I have been doing a great job watching my sodium and fluid intake and the fluid has not returned. Even my blood work has gotten slightly better which just makes me feel better! I have been working full time and plan on teaching again this year at Beth Shalom. God willing, I will be fairly healthy until I receive my new heart and liver. I know it can be confusing that I am doing ok but still need the transplants. Although I look pretty good and feel pretty good, my lymph system is not able to handle the processing of all of the fluid in my body and it is all due to my heart condition and a terrible complication called PLE. PLE is something that I have battled since I was 7 years old. Everything that can be done to help me manage the PLE has been done and the only option now is the transplants so that I can live a healthy life. We are doing a bunch of fund raisers in the month of September and hope that you will consider supporting me.
Photo Galleries (1)
December 3, 2019
Let's get this done!!
October 18, 2019
Sending prayers and good wishes your way! Linda & Steve Anguish
October 17, 2019
Ross, You've been inscribed in the Book of Life for another year (and many more). Aunt Marsha and Uncle Walter (Ciccolo)
October 14, 2019
Hi Ross, I'm a friend of your Aunt Cindy's and have followed your health journey fsince you were a child. I'm sending you love and light for a successful transplant! Everything is in Divine Order! Blessings, Gailann