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.
February 22, 2021
So much has been happening and nothing, all at the same time if that is possible. Ross has continued to do very well and advancing with cardiac rehab. After an hour of working out, he is able to walk the ¾ mile to the apartment which is amazing. He does rehab twice a week, but other than that, he has been pretty much relaxing and healing. His arrhythmias are decreasing so no further intervention needs to occur. Medications are slowing being weaned down which is great news. One of the side effects of prednisone is mood swings and Ross has been experiencing them big-time. We are hoping now that the dose is below 5 mg, he will start feeling more like himself.
The great news is that we are booked on flights to come back to Delaware on March 31, 2021! Ross will be almost 7 months post-transplant at that point. We are so looking forward to coming home!
Just as we had to establish an apartment in Los Angeles, the task of disassembling the apartment also has to happen. We will be attempting to sell all of the stuff we purchased and, will be using the UCLA Buy and Sell app which was so helpful to us originally. Anything we can’t sell, we will be donating to a wonderful organization called Ava’s Heart which is a non-profit organization that helps families with housing for three months after transplant. Ava is a wonderful woman, who unexpectedly went through a heart transplant herself and has been paying it forward ever since.
Los Angeles was on lock-down due to COVID for months so we did not get out much but over the last couple of weeks, once things opened up, we have gone on a few adventures (to Downtown Disney, The Grove and had a wonderful lunch outside, and to a Cat Café so we can pet and play with cats that are up for adoption. We miss our cats, Pip, Lucy, Duncan and Gigi so much and although we wish we could have adopted all of them, we have our two cats each waiting for us at home!
Ross has gotten his first COVID shot and his second one will be on Tuesday. I’m still not able to get my shots so I’ll wait until I get back to Delaware. We have still been very careful as Ross is immunosuppressed and has to be very careful. The first year after transplant is when he has to be the most careful but luckily since almost everyone is wearing a mask, it makes it much easier for him.
Several people have asked about Glenn and I’m happy to report that he has been out of the hospital since the beginning of January and doing much better. He is just now starting cardiac rehab as he was very weak when he left the hospital. We saw him last Thursday at clinic and even with the mask, hat and clothes, he is looking so much better. Unfortunately, because of COVID, we have not been able to spend any time with him or his family which is difficult.
Skylar who was the third patient waiting in the hospital, did not get his transplant and went back to Washington state. They hope to come back to LA hopefully in March to restart the process over. This Saturday and Sunday February 27-28th, there is an art auction to help raise funds for Skylar. It has been posted on Facebook but you can search “Circle Shaped Love” for more information. I’m sure they would appreciate any support given.
Please keep Ross, Glenn and Skylar in your thoughts and prayers as they continue their heart/liver transplant journey.
It will take a bit of time for us to get back to regular life as so much has happened and changed; however, we know for sure that without the love and support of our friends and family, we wouldn’t have been able to manage and will continue to need that same love and support at home! We are especially thankful for the donor and his family who enabled Ross to have his chance of a healthy life!
We will see everyone very soon (5 ½ weeks) but who is counting!
November 28, 2020
I know it has been a few weeks since my last update and wanted to let you know that I have been out of the hospital for about 5 weeks and what a difference in this short period of time. I went from using a walker to go everywhere, to not needing a walker at all! I’ve had to go to clinic at least twice a week and this week, I only had one video appointment. I am still on tons of medications although I’ve been weaning off of some of them but they have been replaced with supplements such as iron, potassium, magnesium and such because my blood work has been varying each week. We have found that there is a delicate balance with all of my numbers and it is hard to keep up with. I think we finally got to the proper dosage of one of my anti-rejection medications which is great! My mom and I sit on Monday nights and fill my pill box for the week. It takes about 45 minutes to make sure everything is accurate. I finally got my staples out for my liver thank goodness because they were really pulling and stopping me from standing up straight. That is one thing I need to work on is my posture, because I got used to rolling my shoulders forward because of the pain/discomfort in my chest and abdomen. Mom has been cooking high protein meals for me and I’m getting used to being pampered. What are the chances she will continue to cook for me when we are home and I’m living at my own place? She says zero but I’m sure I can try to talk her into it. I’m able to do most everything on my own now which was a big change because just two weeks ago, I couldn’t open a can of tuna myself. All this means is that my strength is coming back with the help of PT and OT. In about 2 weeks, I’ll be starting cardio rehab twice a week. Mom is looking forward to me getting pushed a little more and see what my new heart can do but I’m not used to pushing my body so it makes me kind of nervous. Although COVID is bad here in California, we have taken some car rides and yesterday we went to the beach in Malibu. I’m not such a beach person but my mom loved it!
I have loved every card that has been sent to me and really appreciate everyone’s support. I know I haven’t been in touch that much and know that people have texted me, but I’m now just feeling more comfortable in talking and sharing. The entire experience has been really overwhelming and I’ve taken the time I’ve needed to heal both physically and mentally but I know that it will take even more time. The doctors said that I should start feeling more myself at about 3 months post transplant and I’m current at 11 weeks so they do know what they are talking about. The doctors have been so happy with my progress and recognized how hard all of this has been on me and my mom.
I know that Tuesday, December 1st is Giving Tuesday and Help Hope Live is not charging any fees for credit card processing. In addition, Facebook is matching funds donated to organizations such as Help Hope Live. I know everyone has been so generous in helping me raise funds to help me pay for all of the medications I’m on and unmet medical expenses which is running at about $200 a week in co-pays for doctors visits. We will be posting a fundraiser on Tuesday on #TeamRossiRoo so even a small donation will go a long way with the matching funds from Facebook. Anything you can do to help, would be gratefully appreciated! I can’t wait to see all of you when we return to Delaware in the March/April timeframe! Thank you again for everything! Love, Ross (and Donna)
Photo Galleries (4)
February 22, 2021
We are cheering you on, Ross and Donna! Sending continued prayers and endless love! -Your CBS Community
Cantor Elisa Cohn
January 3, 2021
For Ross's continued and total recovery!
November 12, 2020
Hoping your recovery is going smoothly
October 14, 2020
Keep on fighting Ross