HCM-ers: Introduce yourself or just say hi

@nightnurse I read your post and certainly sit side-by-side with you.

@karukgirl is an amazing person, and really, I do not know anything about cardiac concerns. One thing that struck me was the mention of furosemide in your post. I have been using that for several years, and recently switched over to torsemide [another diuretic]. The careful thing is to balance your potassium and magnesium while on diuretics, since they will be depleted and possibly affect kidney function. As mentioned, it's all a fine line!

It sounds like you have one functioning kidney? I hope you can engage the thoughts and opinions of a nephrologist to work hand-in-hand with your cardiologist. A medical team that you can rely on [and remember, you are an integral part of that team!]
Ginger

Hi! I'm Maryrose and I have just been given a diagnosis of hypertrophic cardiomyopathy. While my health has not been good for years, this diagnosis has knocked me off my feet. I always used to joke that my heart and lungs were the only things that worked well. That's no longer the case and I'm very interested in following all of you in the group and your stories, questions, etc. to learn about what this disease entails and where I fit. I'm going to read a good part of this digest first to get a feel for things.
THANK Cynthia, and all of you, for allowing me to be a part of your medical lives.

Hi! I'm Kerry. I was first diagnosed in January of this year. I was referred to Mayo (Rochester) by my cardiologist to rule out cardiac sarcoidosis. My EF is 33% on the left and 74% on the right. The sarcoidosis turned out to be Non-Hodgkins Lymphoma. I also have stage 2 chronic kidney disease and at the end of July I discovered I have 6 large, deep ulcers with H. Pylori infection. I've been reading several of the questions and comments and look forward to learning more about living with this disease. Unfortunately my insurance won't allow me to continue my treatment and care with Mayo so I have to get acquainted with a new cardiologist (Sept 2). It's been a little overwhelming to learn so much at once, but I've been through that before...and before internet...when my daughter was diagnosed with a brain tumor when she was 6 yrs old. I was much younger then and ready to help her fight for her life back then. As her caregiver for 33 years, I've grown tired and older. I'm well educated but sometimes I feel like my brain is paralyzed and I just can't think clearly. I struggle with simple paperwork tasks and remembering things. It is a lot to adjust to. For me, the hardest 2 things are my inability to think clearly and the physical limitations, especially with the heat of the summer. So anyway, that's just plain me!

Kerry, I'm glad you found this Mayo Clinic Connect site, where you can learn much. I recommend you check out and consider joining the HCM Association (www.4hcm.org), a patient education and advocacy organization. Among many other services, they may be able to help you navigate insurance issues.

You mention your concern about thinking clearly, but I have to say you put together a succinct and clear summary of your situation in your post.

In addition to a mutual support group like this site, do you have a close friend or relative (or two) to help you sort through and process the wealth of information available regarding your various medical conditions?

We are all different. I have found that people are often eager to help, which is heartening, but sometimes their well-intentioned advice may simply be off the mark. Ultimately I have appreciated others' persoectives, but I have found I need to keep my own counsel, informed mostly, of course, by trusted medical advisors (backed up by second opinions where appropriate).

Good luck continuing to learn about and address your various medical issues.

Hello, my name is Leonardo Guerra, I am 80 years old, and I live in South Texas, about 20 miles from the infamous Rio Grande Valley River where the river separates Mexico and the USA. The government has a wall built from Brownsville, Texas to El Paso, Texas so the illegal immigrants cannot cross from Mexico to the USA. However, the illegal immigrants still find a way to get across to the USA and I sure don't know how they do it.

Changing the subject, I have been diagnosed to have heart disease, congestive heart failure, coronary disease, 2 upper chamber heart valves that do not close properly and are leaking blood, blood pooling, AFIB, low heart rate in the 40s, sleep apnea and severe pulmonary hypertension which causes me to have exhaustion, tiredness and shortness of breath. I have had 3 cauterizations to determine vein blockage, 2 cardioversions to get my heart back to normal rhythm, 2 Ablations to eliminate AFIB, and the last procedure on July 15th was Cardio Cauterization. I have a 20 to 30 percent blockage on my coronary arteries and my Cardiologist said it was not significant and nothing to worry about. But he is very concerned on my severe pulmonary hypertension which unfortunately there is no cure for it.

Unfortunately, the procedures for my AFIB I have had worked for about 2 to 3 months and eliminated my AFIB, but my AFIB returned, and I have the same symptoms as before. I am very disappointed of having to go through all of these procedures to no avail, but I gave it a try but did not work out for me.

As for the pulmonary hypertension, my Cardiologist has me on diuretic medications daily but he wants to double my dosage so my body can secrete more fluids from my lungs and body. However, these diuretic medications affect my kidneys, and I am now on stage 3 of chronic kidney disease. So, if I double my dosage of diuretic medications, they will make my kidneys worse and the last thing I don't want is to wind up on dialysis.

So even though my Cardiologist prescribes a double dosage of diuretic meds, I am not going to take them and will take my chances with the pulmonary hypertension. He needs to get clearance first from my Kidney Specialist first and I have left a message to my Kidney Specialist that I am opposed to taking anymore diuretic medications.

My brother is surprised that I am still alive and walking, but I tell him that I have left everything in God's Hands and only God will decide how much time I have left. I am doing my part, and I am not giving up and will still continue to go to my follow-up visits with my doctors and Specialists.

Well, I guess I have said enough, and I am rather tired, so I am going to my recliner and rest as much as I can.

Thank you and God Bless.

Hi,
My surgery is September 26th.

Hello @mbi, you'll notice that I removed your personal email. Connect is a public forum. We recommend sharing personal contact information using the secure private message function. I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support.

You mentioned your surgery is September 26th, which procedure are you having done? Are there any aspects of your upcoming surgery that you'd like others to share their experiences with?

Hello @lgusan, I'm glad you found Mayo Clinic Connect.

You certainly have a long list of heart issues! And it sounds like you walk a tight line trying to keep fluids balanced on top of having kidney disease.
You are right to be concerned about further harming your kidneys, and I do hope you are able to get the clearance you need to help you with the pulmonary hypertension.

You posted here in the Hypertrophic Cardiomyopathy group, is this also a diagnosis you have?
When will you be seeing your cardiologist again?

Hi.Betty Ruddock. I have been an HCMer for about a year that I know of. I'm on Verapamil and doing well. I would not have known i had this if my nephew didn't have open heart surgery. It prompted me to have an EKG and an Echocardiogram. It showed a critically enlarged left atrium and a hard heart wall. I feel fine and have no symptoms. So, I am following my doctor's orders and living my life. At first I was so frighten.

Hello, my name is Valleri. I'm 73 years old. My GP heard I had a heart murmur for the first time a year ago. He ordered an echo for me in order to rule out anything serious going on. Unfortunately, it showed I had HCM, so I was referred to a cardiologist. He started me on Metoprolol 25 mg, which was later doubled to 50 mg. I haven't noticed any changes (good or bad) with my symptoms, yet. In a way, I was happy to know there was a reason I was having periods of breathlessness once in a while and increased tiredness.

I'm a vegetarian, so I eat a fairly healthy diet, other than I do eat and drink some dairy. I drink 1–2 quarts of water a day, and some coffee every morning. In addition to the echo, I also had a cardiac MRI, which confirmed my HMC. I was riding my exercise bike 20 minutes, 5–6 times a week ... until I couldn't. I'm a former smoker of 1/2 pack a day for 30 years until 2017.

Over the past year, my episodes of breathlessness have become more severe, and they happen more often. I now go through periods of gasping for air for 30–45 minutes, with dizziness, and my pulse rate jumps up to 100+. Nothing helps when that happens, other than lying flat on my back. (Is that weird?) Supplemental oxygen doesn't help, nor does sitting. That is followed by an hour or two of dizziness and shaking like a leaf.

My mother died from cardiac arrest when she was 54, and I am the only person still alive in my family.

My cardiologist also recommended I see a doctor three hours from me to find out if I would qualify for the mavacamten study. Unfortunately, I don't have transportation, and there aren't any shuttles between where I live and the hospital three hours from me. I'm still trying to work something out, though. If I can get that figured out, then I can see if my insurances will cover much of the $87,000 the prescription costs per year. (gasp) There isn't a Mayo Clinic in the state where I live.

I think that covers everything.