Allison: HLHS, 1972


My name is Allison Holmes.

I have seven defects in my heart, they include D-TGA, Single Ventricle, Double Outlet Right Ventricle, Severe Pulmonary Stenosis, Mitral Atresia, ASD, VSD. I also have Situs Inversus. I learned recently I have HLHS as well, My doctor said my left ventricle is "a nub."

I was born in February 1972. I am 46 years old.

I had my first surgery at the age of one at Sanger Clinic in Charlotte, NC.

I initially had a Waterston Shunt by a Dr. whose name I cannot recall. It began to fail shortly after being placed. Then Dr. Robicsek preformed the Blalock-Taussig procedure on me.

This surgery saved my life.

When I was 19 I had another surgery, a central shunt was placed. That was the last major surgery I had on my heart. I did have a stent put in my shunt due to crimping of the shunt in 2007 via catheterization. In 2002 I began experiencing some issues which prompted the doctors to start the evaluation process for the heart and lung transplant list. At that time, it was discovered that I had a cancerous tumor in my left kidney. I had the kidney removed and once recovered I returned to my normal level of functioning.

I have lived a reasonably normal life considering my condition. I have never been able to keep up with my peers, but I sure have tried! I've engaged in activities I probably shouldn't have, just as many young people growing up do. I wanted to experience as much of life as I could.

I have not been able to have children due to my low O2 levels.

In 2014 I got pregnant, and my doctor made me have an abortion. They told me that if I didn't, it could be detrimental to my life. I had been pregnant before in my life, but my body would always miscarry. Having the abortion was very traumatic for me as many of my close friends were pregnant or having babies at that time. I still deal with the feelings that this caused, especially as I watch my friends' children grow. I have thought about adopting or being a foster parent, but I just don't think I have the stamina it takes to be the kind of parent that I would want to be for a child, so for that reason I just have pets.

At this time, they tell me that I am not a candidate for the Heart and Lung transplant due to the Situs Inversus, they do not know how they would hook up a normal heart and lungs to my other organs that are on the opposite side of normal organs.

As I have gotten older I have slowed down a bit, I don't have the exercise tolerance that I used to have. This is probably due to Pulmonary Hypertension that I have developed as a result of my CHDs. I noticed more of a change in my exercise tolerance and fatigue after having my gallbladder removed in 2011.

I do work part-time from home as an ESL tutor. I have had to employ help to assist me with keeping up with the housework, mainly keeping my floors swept, mopped and vacuuming. ( I have 3 furbabies) Those chores are particularly hard on me as my O2 levels are the mid-70s to low 80s and can easily dip into the 60s when doing labor-intensive activities. My husband helps when he can.

I really enjoy working with the elderly and animals. It brings me a lot of satisfaction, and I feel like it gives my life meaning.

I volunteer with Meals on Wheels several times a month and also with Carolina Waterfowl Rescue, feeding baby birds in the spring and summer. It does wear me out but I like feeling useful, and it is usually a lot of fun. I also enjoy traveling whenever I can.

I don't really follow any particular diet, but I probably should follow a low sodium diet. I notice an uncomfortable feeling in my stomach when I eat out, I feel so bloated and short of breath a lot of times after I eat out. When I cook at home, I limit the salt in my food, and there is a noticeable difference in how I feel. My food digests easier, and I don't feel bloated and SOB. Within the last two years, I have started drinking mainly lemon water due to sodas making me really bloated and quite miserable. I will have one occasionally and almost always regret it afterward.

I take several meds now. This began after my surgery in 2007 when I had the stent placed. The first medication I had to take was Coumadin. After my gallbladder surgery I started taking Sildenafil, and now I take Letairis, these are PH medications. I also take a small dose of Lasix to keep the fluid down. Recently I was put on Metropolol to help with the palpitations that I get. The DR says they are harmless and nothing to be concerned about but they have become more frequent and more pronounced over the last several years. (I have worn the Holter monitor several times to make sure these are just "early beats" as the doctor has called them).

I also take Xanax prn, due to anxiety, as you can probably imagine, aging with these serious defects can really play tricks on your mind. The “what ifs” can really get to me sometimes if I don’t keep it in check. I rely on my faith in God to get me through the darkest times. He has never let me down.

When I was younger my Mom would go with me to Dr appointments etc. But at the age of 18 I started handling all of my doctor visits by myself. It seems I have dealt with most of these things alone for the majority of my adult life. My parents are there for me, but I am the kind that carries my burdens myself. I don't want to be a burden to them. I feel I have been strong and independent throughout all of the things I've had to deal with. Sometimes when I think about it though, it makes me sad…I never wanted this, and I definitely didn't want to carry it alone, but for the most part, I have.

I recently changed my heart doctor because I had an experience with my cardiologist that just really knocked the confidence right out of me. As I am getting older, I wonder about what will happen to me with time. I was having a particularly emotional day when I saw my Adult Congenital doctor, and I guess I was too emotional for him. I was asking him about my future, the prognosis, etc. and I started to cry. (I'm not a big crier, usually) He looked at me, and he said: "Allison, what do you think happens when you die?" Well, I was floored, to say the least! Not what I wanted to hear from the doctor in whose hands I put my life! That totally shattered my confidence in him. After being at that clinic for 40+ years, I just couldn't go back there with certainty about the care that I was receiving. Note to doctors, what not to say to your patients- I need a cardiologist, not a therapist!

I have recently transferred my care to a great doctor at Duke, and I really do feel like I made the best choice for me.

Throughout my life I have endured the burden of CHD, I feel mainly, alone. I never knew anyone with a serious health condition, let alone a congenital heart defect. When I found out about CHD Legacy and then the Adult Congenital Heart Association, I was amazed that there were so many others out there like me. I had no idea. It was eye-opening. I met my first heart sister, Belen Blanton, in 2016 at the ACHA conference in Orlando. We have stayed in touch, and I have visited her a couple of times since then. She has been such a blessing to me!

I wanted to help others to know that they do not have to face CHD alone, for that reason I became an ambassador with the Adult Congenital Heart Association. I am still trying to make connections, and at times it is not easy for me as I am somewhat of an introvert. However, I am working with ACHA in several areas. Last year I helped start the first Meet and Greet for CHD patients in my area, and I also went to Washington DC to talk to my state's representatives about CHD and the Congenital Heart Future's Reauthorization Act, which has since passed in the House and the Senate! I hope as time goes on I will continue to make connections in my area and help others to live their best life despite CHD.

If there were one thing I wish I could have known growing up, it would be to plan for a future. I was always told that I wouldn't live to be a certain age when I reached that age the doctors would put another limit on my lifespan. In truth, they didn't know. Therefore, I never thought that I would live to adulthood. I never planned to live. I never expected a future. Yet, here I am forty-six years later, still alive and beating the odds.

Faith plays a big part in my life and has sustained me through many health scares as well as other difficult times in life. After my last surgery the T scar on my chest became a cross, and for me, it is a daily reminder of how and why I am here. One of my favorite scriptures is Jeremiah 29:11 "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."

He has kept his word, and I am so thankful.




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