What’s it like being the husband/boyfriend/wife/girlfriend of someone who is living with a Congenital Heart Defect? We have had a husbands perspective wrote for us.
I am 46 and met a lady in 1986 in August. After getting to know this lady, we began to fall in Love. We had many discussions while we were getting to know each other. She told me of her history of Congenital Heart Defect and how it had been repaired. I along with her at our young age of early 20’s didn’t think of what all this had entailed and what it meant. We went on to have three boys as our children and raised them all with no problems for them. Then about 10 years agoe she began to have bouts of chest pain. She went to numerous ER visits, Cardiologists and such with no real answers. Then about 5 years ago was diagnosed with CHF and Pulmonary Hypertension. This was a blow to us and she was sent to a Cardiologist.
The Cardiologist met with her twice and had her in Chicago, Ill having a heart transplant in 2 weeks. To say the least we were scared to death. After this we were afraid to go to the Dr. We would dread the news they would give us. The cardiologist decided to do a few tests. He did an Echo, a TEE (TransesophogealEchocadiogram), regular echo and found nothing to point to the problem. He was an adult cardiologist and had no clue as to what he was dealing with. A few weeks later she had yet another bout of chest pain and ended up in a different hospital. We got yet another cardiologist with no idea about congenital defect patients. He took her care and had some visits with her where they did a stress test, echo, EKG, a complete work up heart cath and all, no problems found. We were with him for a while and my wife got to where she didn’t trust him, so the next time she ended up in the ER we were given the original Cardiologist, who apologized for the scare and wanted a second chance. He was given the chance and worked very hard at trying to understand something that he still had no clue about. He did send her to a pediatric cardiologist, who then sent her to another Dr. who did a heart cath and found nothing wrong. We stayed with this cardiologist for the next 4 years and the whole time no mention of going to see a congenital specialist was mentioned.
As I look back, it should have been in our head to go find a Specialist to check her out. About 4 months ago she had to switch cardiologists and we found the present one with yet another bout of chest pain that sent her to the ER. When he walked in he presented himself to us and introduced himself. He is a younger Dr. but, he had the sense to tell us up front “I have no knowledge of congenital problems, so if I am going to be your Dr., I want you to go see a Congenital Heart Defects Specialist.” Which we agreed to. This Cardiologist went and found one for us and told us who they were and then told us to go home, get on the internet and check this Dr out. Also, he told us to look around and if we found one we liked, to let him know and he would give us a referral to that Dr.
We went home and searched for Specialists. There are a few out there. We made a list of them and then we found all of their credentials and compared them to each other. After all this was what we agreed with the Cardiologist. We went back to him and had him set up the appointment for us.
After a lot of unknowing, we went to the Specialist and had a good visit. He did a EKG, X-ray, and Echo with a bubble study. He had told us that if the Echo didn’t give him the info he wanted, it would be yet another heart cath. Luckily, he got all the info and views he needed to see. When all the testing was done, we went back and talked to the specialist and was given the final word. Her heart looks good for when this was done, how old she is and the problems that she has. The only news he could give us was that if she starts having problems with her heart, the only fix would be a heart transplant. She is now diagnosed with chronic chest pain which is normal for her considering she has had 2 open heart surgeries. It took us 18 years to figure out that what the Doctors told patients when this was done, was wrong. People were led to believe this was a total fix and that no follow-up was needed. This is so wrong.
In the past 6 years we have learned so much new information. I have been with this lady for 24 years and don’t regret any of it. I get so upset everytime she goes to the hospital for chest pain. I will back this lady in any way I can and will try to give her the best life I can as long as we are together. I hope that the Doctors have learned from her and can use this knowledge in the future for patients that had the same procedure done to them. I love this Lady and will continue to love her for the rest of my life. She has shown me how much of a fighter she is and I know that she will be beside me in my time of need. I hope to find more people out there who are spouses of congenital heart defect patients and we can figure out a way to get together and share info and feelings and whatever we need to share with someone who understands what we as spouses are going through.
Wrote by Jody Ashcraft
Added to the website: July 2010
Jody Ashcraft has kindly given CHD-UK permission to use the photograph (Jody’s wife and grandchild).
Jody says of the photograph: ‘I am sending you this pic with pride and to let others know that even if they do have a CHD they can lead a full normal life for the most part. All I can advise them is to PLEASE keep your Dr.’s updated and keep seeing them.’