My name is Cathy Walters. My home is in New Mexico. I had been diagnosed three years ago, at age 65, with a progressive heart disease called ARVD (Arrhythmogenic Right Ventricular Dysplasia.) I was treated with medicines and had an ICD (defibrillator) implanted. My heart compensated for some time, but in late 2012, it was clear I was experiencing right sided heart failure. At my regular ICD six month exam this past January, I was advised to select a heart transplant center for an evaluation. Because my daughter lives in Hollywood, quite close to Cedars-Sinai Medical Center, that was the logical choice. After a week’s worth of tests and consultations, and a few more weeks of follow up tests at home, I was accepted as a transplant candidate and put on the national waiting list for a donor heart on June 4. Three days later (June 7), I flew out to California to begin the wait, since it would have taken me too long to get here should a suitable donor heart become available
The day after I arrived (June 8), my daughter and I set up an account on the Caring Bridge web site (www.caringbridge.org/visit/catherinewalters so family and friends could keep up with my progress. This turned out to be very fortuitous since I was called two days after this (June 10) with the news that they were considering an available heart. Surgery was scheduled for early the next morning, and from that time on, my recovery has been almost flawless, about as rapid as possible, and for all this I am extremely grateful! I give my heartfelt thanks to my donor family, to all the medical personnel at the transplant clinic and at the hospital, and to my amazing daughter who couldn’t have been a more caring, competent, and continuing caretaker! I have experienced innumerable blessings throughout this journey, including 650 guestbook entries on Caring Bridge, calls, cards, gifts, visits, emails – all offering support and prayers, which have been my lifeline! Special thanks to the 7 friends and family members who used their own resources to come and be “backup caregivers” for my daughter during the six weeks I was not to be left alone.
I am now getting ready to return to my home in New Mexico and to my three cats, who have been ably cared for by a young woman from my church there. The past several weeks I have focused on getting my strength and stamina back as much as possible since I plan to return to my active lifestyle, and I will have to get acclimated again to the high altitude (7200′). I have lived there for 37 years, and have never been away for more than 3 weeks. When I return, it will have been over four months away.
I know I am extremely fortunate to have had a short wait, and a recovery without complications. We have met many other patients and families who have faced much greater challenges. And just having my daughter live here was a huge advantage, financially. Even so, I have had quite a large sum of expenses out of pocket not covered by my health insurance company. My daughter lived in a very small and cramped apartment, having been there five years, and having collected a lot of stuff over the years. She also had a dog and all of his paraphernalia. Besides this, she worked from home, so had her “office” in her apartment. Thus, it was necessary for her to move into a larger apartment, which she actually did WHILE I was in the hospital, due to everything moving so quickly.
Since it was more money than she could come up with at the time, and time was a big factor, I agreed to co – sign the one year lease. I also reimburse her for most of our other daily living expenses. Since I live on a small pension and social security, and do not have such a living expense at home (I paid off my home mortgage with life insurance proceeds when my husband passed away 18 years ago), this extra expense has put a real dent in my finances. I also have the travel expenses associated with the numerous follow up visits and tests, which will continue frequently the next few months, tapering off to twice a year beginning in 2015.
If the Ava’s Heart Foundation were successful in their hope of establishing a “place of lodging and support” for heart transplants and their families (like a Ronald McDonald House with a different clientele), so many people would be helped. I did meet another recipient who lives in a rural area near me (the town where I live is quite small) only a few days before I left for my evaluation trip. She has been an invaluable support to me, nevertheless. I can imagine what a difference it would make to those who need to relocate to the Los Angeles area, who have to leave family and friends, who don’t know anyone in this area, and especially aren’t able to be in contact with anyone else walking the same journey they are on. Of course, the financial implications are severe on many people’s lives as well. My friend was here for several months waiting for a heart and it was very difficult for them, having younger children at the time who needed care at home. Her husband also needed to work to keep up with their health insurance. She did manage to establish a relationship with the owner of their hotel, who did his best to make it affordable for her. But having a place dedicated to transplant candidates and their families would allow them more dignity, and would even benefit their health, as they would not have the emotional stress and worry that can occur when people don’t know how they is going to pay the bills and extra expenses that have been thrust upon them.
I have heard some very sad stories concerning some of the people who have come to the Foundation’s founder, Ava Kaufman, for help. There are even some who give up, simply because they cannot afford the extra expenses of relocating and/or having to pay for a second home during what could be a year or perhaps much longer.
In addition, transplant patients need to remain in the area of their hospital and doctors for at least three months post transplant, and that is if there are no complications or setbacks. Tests are performed at least weekly for a time, doctor visits are twice a week the first month, and there are other requirements for follow up care. So the extra travel and lodging expenses continue for some time,even after the surgery and hospitalization, all of which is generally not covered by health insurance.
I will close by saying I hope people reading this will appreciate that many transplant patients and families have a lot of sacrifices and sometimes obstacles that need to be overcome, in addition to the other physical and emotional challenges that are more apparent. The journey taken by a heart transplant recipient is not easy or cheap. The greatest need is for more donor hearts to be available when they are needed (increased awareness and action on the part of people to ensure that their organs are considered for transplant, should they become available through some unfortunate circumstance). Second to this need, is to ensure that recipients and their families get the necessary care before and after their transplants, in a way that is as efficient, caring, and affordable as possible.
Heart transplant date June 11,2013
Cedars-Sinai Medical Center