HF and Thankful

Very thankful for this discussion forum, to be able to share our experiences with others that understand.
I had Covid (February 2020) weeks before all of the toilet paper craze.
I recovered quickly and completely. 8 months later, I started getting very sick. My PCP diagnosed me with severe panic attacks. Strange, as I don’t have anxiety issues, but ok, the symptoms seemed to fit. To the horror of my girls and friends they saw a rapid decline in me over several months. Many visits to the ER, some by ambulance as I was passing out from suffocating. They did EKG’s stabilized me and sent me home telling me my heart was fine. To anyone who has experienced this suffocation, it was beyond horrific. I visited my PCP 15 times in 5 months, went to several specialists, all agreed, panic attacks. I was so sick, I was just going through the motions, trusting my Dr that I’ve been with for 12 years. I really was unable to make correct decisions, my life was a complete fog. It wasn’t until 8 months later my Dr, grasping at straws, sent me to a gastroenterologist. I barely remember the appointment but he stated that he wouldn’t touch me until I want to a cardiologist. Out of all the Drs I visited, dozens, it was a gastroenterologist that recognized what it was. The next day I was at a cardiologist, barely remembering anything he was saying but he said he absolutely needed to do more testing because he did not like what he was seeing on the echocardiogram. The next day he put me under anesthesia and scoped my heart. I left with no instructions as to what they found. The next morning I received a call from Phoenix Mayo Clinic. The Dr that called told me to come to Mayo immediately. Being confused, she stated it was my heart. Ok, well I’m so sick, Mayo Clinic will figure it out. I drove there and she admitted me instantly. In my naïveté, I thought they would put me on a cutting edge drug and send me home. Not what happened. They started every test imaginable before I even had a chance to get in my hospital gown. It was the 3rd day when I asked my nurse how many patients she had. She told me 3. Shocked, I asked her, am I in ICU?! She said, you are on the heart transplant floor! Unbelievable. 5 minutes later, my woman cardiologist entered my room and said when she met me she knew she couldn’t tell me that I needed a heart transplant. Bad moment. I was in end stage heart failure. But she said everything is on the table now and indeed I needed a new heart. Wise decision on her part, spoon feeding me bad news. I was at Mayo for 10 days, and when I left I was still extremely sick. Now, I’m seeing a male cardiologist there and he stated, weeks later, that all the Drs didn’t think I was going to make it through the first night. My EF was 18 and my NT-Pro BNP number, which should be below 85, was almost 11,000. I was on the heart transplant list for 5 months, getting tests done, etc. all the while my Dr at Mayo started me on 10 different medications. It was apparent, very quickly, that these medications were working very well.
My EF after 5 months is 47, and my
NT-Pro BNP test is at 56.
The Drs are all calling this a miracle, which I know it is.
Physically I’m doing very well. What I’m dealing with now are emotional issues…PTSD and Survivors Guilt. I feel awful that there are so many patients that are much worse off that I, and I just need to get over these feelings. Visiting my Mayo Dr, who is still my transplant Dr, is a very difficult experience for me. I’m in the waiting room with patients that either have received a new heart or are waiting for a new heart. 99% of them are extremely ill. At Mayo you are required to wear a name tag that signifies you are a patient. People look at me wondering why in the world am I there, I look very very healthy. So now, I sit in the waiting room corner, not making eye contact with anyone and trying not to cry. The guilt I feel for my miraculous recovery when others are so sick is almost unbearable…that’s what I’m dealing with now. Also, dealing with anger that I was so incredibly mis-diagnosed for so long. The suffering that I experienced during those 8 months is not easily forgotten.
I appreciate all of you who have taken time to read this extremely long post, I’m thankful for the support more than you know. I’d love to hear if any of you have similar experiences.
Monique