Heart Disease: Let’s Talk About the Emotional Side

@lailaamin , One of my life-long problems is HCM. Mine was first diagnosed at about age 15. I am now 80, and still have it, but I know now it is part of my systemic hereditary Gelsolin (Meretoja's, Finnish Amyloidosis), with RyR2 and FKTN and some other stuff. Now this is not to say this might be your problem as well, just that it is mine, complete with a couple dozen stents, total 30 heart caths, 2 CABG with 7 repair sections. Every organ, tissue and liquid I have has been impacted by this. Anyway, a low-carb diet, hi-exercise regimen, along with a constant growth of knowledge of what I have has been a lifesaver for me. Frankly, I have had to do most of it on my own, because of the emotional cost of the failed medical care we all seem to receive. Only the various images (CT, X-Ray, Echo, MRI, ECG, etc) have actually been trustworthy, so I rely in this evidence and some very good lab work from Mayo, Alnylam, Ambry Genetics for functional diagnoses. But even that is argued against by doctors who are extremely jealous of the top labs. So I completely agree there is a terrible emotional toll on HCM and other cardiology patients. I have had to struggle with temptations of suicide many times, to each time I have to go back to the materials I have collected over the years that show the reality of my issues. I bought Dr. Gertz big book on Amyloidosis, so several big clinics refused to see me any more because I had consulted with Minnesota Mayo. Well, actually, I did drive by a building of theirs about 40 years ago. Getting old with HCM and all the other signs of Gelsolin is not a pleasant life.

@kanaazpereira - Sorry, just now getting to the topic you posted.
I have shared bits & pieces of this story over several posts, but will give this a go and try to be not overly wordy.
Shock, unbelief, crazy are just a few words to describe my initial experience that faithful day in May of 2014.
I had just finished my typical 1.3 hr. workout that Monday and headed home to clean up and grab a bite before returning to work.
As I was about to sit down to eat the lunch my wife had set out I started feeling very flush, sweating a bit and then the pain moved up my left arm and then accross my chest. I decided to sit in my favorite chair in the LR for a moment to pause and think about what I was feeling. My wife followed me in and asked if I was OK. My response was no and I think I'm having a HA!
She expressed her unbelief just as I had and asked me are you sure? I remember reading in a reader's digest once that if you think you are having a HA grab several baby aspirins and chew on them. She quickly got some for me and we prayed for wisdom for that moment. We decided to drive up to our ER just about a 20 minute ride. No more than 10 minutes into the drive I had wished we had called an ambulance (definitely that would have been the right decision!) I asked my wife if she could drive faster please and she responded that if I go any faster I'm going to run into someone! My response was to just go over them!
The pain was excruciating and I felt any moment I was going to pass out!
We arrived in front of the ER and I was met by someone with a wheelchair immediately. I was rushed into the hospital and rather than rush me into the ER they rolled me into a business office where a nice woman started asking me all sorts of questions.
I stopped and said please mam I think I am having a HA! At this point I was in tears and things moved quickly as they rolled me into an ER room and started plugging me into all kinds of machines. I talked with the Cardiologist briefly and after getting the pain under control they proceeded with the several typical tests. My wife joined me and we were both told that I was not presenting any real signs of having a HA, but he decided they wuld admit me and do a stess test in the morning. My wife decided to run home to grab a few things for me and text our good friends to ask the to pray.
Soon after the Cardiologist left the room a Echo Tech arrived and started performing an echo. Within a few minutes he quickly left the room and returned just as fast with the Cardiologist in tow. Things at that point proceeded very quickly and after procuring a team of doctors I was run into the Cath Lab and received a stent in my LAD. I had just survived "the Widow Maker" with 100% blockage of my LAD.
I started not long after this ordeal with Cardio Rehab and because I was accustomed with much of the exercise equipement I relished being alive and got to work. I felt very secure there because it was just down the hall from the Cardiology Dept..
I was told by my Cardiologist early on that my heart had suffered damage to the lack of blood getting to a portion of my heart and he talked about a term I was not familiar with called Ejection Fraction (EF). Mine was at about 30% and he told me that often within the 1st year that will increase. Once complete with Cardio Rehab I get permission to go back to my Gym and I was on a quest to get the blood flowing again and increase my EF.
I was feeling great and it almost seemed sureal at times that I had really experienced this.
After the 1st year I had another Echo and met days later with my Cardiologist. I could'nt almost wait for him to read the Echo and tell how much progress I had made! Much to my surprise I was presented with something I had not anticipated. My EF was about the same!
From that point on although thankful I was alive, I was not expecting what I was told after working so hard over that last year!
I began to feel like "damaged goods"! That feeling really took over me and it was often a real battle. I had been working out nearly 3x a week for years and out of the blue w/o any warning Boom! Seemed like my life was forever changed!
Year 2 came and once again I had another Echo with the same results. I was really bummed!
I decided that since we spend most of the month of April in Tucson, AZ. I was going to get a 2nd opinion from the Scottsdale, AZ. Mayo. I made the appt. and several months later we were there and I met Dr. Lynch. I had a whole series of tests they had set up and he informed me that he would be with me for most of the time. The last test I took that day was a stress Echo and as promised Dr. Lynch was there. He pushed me hard on the Treadmill and I had these monitors in front of me that he was watching while he cheered me on. He would ask can you keep going and I would say yes and before I knew it I had broke a HR of 150 whearas in the last 2 years of doing cardio the highest I had been able to get was 137. He had me drop down on the bed where the tech continued the echo and the whole time Dr. Lynch kept saying great pictures! You did great! I was ecstatic!!
We met about a 1/2 hr. latter in his office and he told me that it would take him a few days to get final results, but he was assured that my EF was much higher than 130. We left a day later to return home to OR and as promised Dr. Lynch wrote me a email stating that my EF was in fact 145.
I tell you this story to encourage you and perhaps get a second opinion.
I nor any of you are damaged goods! We are all God's children and are deeply loved.
I can't say enough about the Mayo Clinic and their Drs., Nurses and Staff!
I will always be eternally thankful for their care.
Jim@thankful

In 2017 my husband and I went on a gorilla trecking trip, climbing up the side of a volcano in Rwanda. He was diagnosed with HCM at 42 and 30 years later he was still fit etc, we end up at 8000 ft.with no shortness of breath or fatigue sooo go figure. Fast forward to March of 2018 and he had a complete heart block and ended up with an ICD, Strange how things suddenly change because on October 4 2028 had septal myectomy. So take care and keep an eye on any small change.

October 2028 hasn't come yet. (LOL)

Thank you for responding. Since age 15 you have been dealing with all of this? Unbelievable!! Mostly remarkable that you have found your way through it all. I must say I feel so alone in dealing with this then add COVID 19. What I have learned so far about HCM, I have obstruction with it, so HOCM, is that when present to ED, the doctors ate looking for a diagnosis to fit into their little symptom box snd pull out a familiar diagnosis and send you on your way . Only after my persistence that there is something wrong with me, I am not just hypertensive with anxiety. Stayed away from hospitals for over 26 years when I had my daughter send from January to March I went to ED 4 times before they finally did a Cardiac MRI and gave me the diagnosis of HOCM snd referred me to Mayo Clinic because nobody in the area treated HOCM. What about yourself? Did ypu have local doctors through the years that helped you, treated you? What were your symptoms at age 15, middle age, up to present? Have your symptoms changed over the years? How have you dealt with symptoms all these years, meaning what seems to make them better or worse? Are you doing ok today. Did you ever have the Septum Myectomy surgery? My best to you!

Angiev18, Yes, I did have, and to some extent still do, have local docs who have treated me to the best of their ability. However, in order to do that they had to defend me from some major labs, some get-rich-quick medicos, and assorted quacks. But when I show them the list of signs and wonders, most of them just sort of turn away to defend themselves. My symptoms at age 15 were chest pain and ankylosing spondilitis (I know now.). Middle age, three heart attacks, heart caths every few months. Now, it is the heavy stuff. Heart failure with recovered Ejection Fraction, organomegaly of every interior organ, cerebrum protein deposits showing transmissible Spongiform Encephalopathy, purpura on eyelids, toes, macular skin, cancers of thyroid, pancreas, prostate, lungs, esophagus. Cracking and breaking up teeth, massive eosinophil, flattened area across bridge of nose, chalaisis of eye socket and face, lower lip swelling, Am i doing ok now? Good question. I am still alive, but I can tell I am weakening rapidly. Lot of RA in hands and legs. Well, that's the heavy stuff. Heart wall thicknesses up to 17-18 MM, well past the 12 mm standard. Cutis laxa. Putting out about 2.5-3.0 G of hepatic protein per 24 hours. Leatherized urinary valve requires catheter 6-8 times per day. Most important, I am a fan of OMIM from Johns hopkins, I read everything I can get from Helsinki Univ. Hospital, Mayo, Boston Amyloidosis. And I tell everyone where they can find the info. Anyway, and I have diabetes 2, and get the good shoes from Priority. And put my books and stuff out there for folks to find and read.