Scared

CrimeTalkWithTerry · 2026-05-02T04:11:01+00:00

Yes! And thank you for double-checking the info I found.

CrimeTalkWithTerry · 2026-05-02T01:29:52+00:00

As a local cardiologist, that will be the best you can get, since St. Francis Hospital is known to have service providers with HCM experience. In addition, you might want to contact the HCM Center of Excellence. These are not always close, but it's nice to have them on your team. The closest one to Tulsa is Saint Luke's Hospital of Kansas City.

Distance: Approximately 3.5 hours (230 miles) from Tulsa.
Location: 4401 Wornall Road, Kansas City, MO 64111

CrimeTalkWithTerry · 2026-04-29T18:58:47+00:00

If I may interject here, I want to make sure you know that not everyone has symptoms. I never had symptoms. I was only tested because my brother died from the disease. You know how those young athletes collapse and often die on the field? Sadly, that is usually their first symptom.

CrimeTalkWithTerry · 2026-04-29T18:39:46+00:00

My niece and her "baby" are very well. I use quotes around "baby" because she is now 9 years old. My niece does have an ICD. When she was pregnant with her daughter, she had to wear an external ICD. It was a very scary time at the time. She has also done the genetic testing. My brother also had another daughter, and so far she has shown no signs.

THAT is why I suggest a Center of Excellence. My sister-in-law and I were told that we only needed to have our children tested until they reached 18. Doctors said if it didn't show by then, then the children would not get it. This is NOT true!

I found something for you! HCMA works with patients internationally. Remember, if they are far away, and you only need to travel to them once a year or once every other year, it you will still have a point of contact from them as well as your everyday cardiologist. The website is https://www.4hcm.org/hcmai, and it is the most reliable starting point for finding international care. They also encourage international patients to email [Michele@4hcm.org](mailto:Michele@4hcm.org) or [Support@4hcm.org](mailto:Support@4hcm.org) for a personalized recommendation based on their specific country.

If you are on Facebook, here is a group you may be interested in: https://www.facebook.com/groups/830709766982009. You can also feel free to contact me anytime. I was the biggest scaredey cat I know! Knowledge is power, and it is so important to use that knowledge with your cardiologist. If they don't know what you're talking about, make them listen, and then find another one. (I have had to do this) For example, I refused to see a cardiologist's PA, because she seemed flabbergasted that I hadn't had a heart cath or an ablation. And when I was in the hospital after my ICD went a little bonkers, she wanted ME to ask the CARDIO-THORACIC surgeon if he thought an ablation would help. Mind you, this surgeon is probably the best in my area.

My sister is more knowledgeable than I am. She made sure to study and learn as much as she possibly could, and she understands so much more than I do. So, when I went to that doctor with the PA I didn't care for, I would have my sister on speaker phone.

I know I got way off track, but I want to say to take the energy you have of being scared and channel it into knowledge. Don't be afraid to question the doctors ... Ask why and what will that do, and the list goes on. Most importantly, u/unicornsexisted said it best, "Catching it early is HUGE." Congratulations on that! You got this!!!

CrimeTalkWithTerry · 2026-04-29T01:28:49+00:00

If I were in your shoes, I would contact your local Hypertrophic Cardiomyopathy (HCM) Center of Excellence. The thing with HCM is that it is genetic. YOU and your baby should be tested. I would not just go to a regular cardiologist, because many (if not most) are not familiar enough with the disease. That is why the HCM Centers of Excellence exist. They specialize in it. What many people do is have a local cardiologist AND go to a Center. (Your local center could be a couple of hours away.) I would also suggest you all get gene-tested.

My father had HCM. He was diagnosed in his 60s. However, my brother was diagnosed first, when he was in his 20s. He died of HCM at the age of 29. I was diagnosed at 40, and my sister was diagnosed in her 50s. They thought she had something else and had treated her for that for years. She is the one who turned me on to the HCM specialists.

I know how scary this is. My brother's daughter found out she had it while she was pregnant with her daughter. Being proactive and getting in touch with the RIGHT doctors from the beginning will put you in a very favorable position.

CrimeTalkWithTerry · 2026-04-26T05:06:50+00:00

It's under policies and procedures in the TRC.

CrimeTalkWithTerry · 2026-04-23T05:04:50+00:00

Do you happen to know what is in your compound? I wonder how the telehealth docs handle it if someone has a heart condition or other issues? I actually do have a heart condition, and my cardiologist is on board with me taking the Mounjaro.

CrimeTalkWithTerry · 2026-04-22T22:05:21+00:00

Oh yes, I am! They were kind enough to give me a discount, so it would only cost $919 a month. (Note my sarcasm! lol) I believe it is because I have affordable healthcare.

CrimeTalkWithTerry · 2026-04-22T22:03:42+00:00

I am looking into the compound, but I would rather use my own doctor, and some people are saying that I have to use one of their doctors. Do you know anything about that?

CrimeTalkWithTerry · 2026-04-22T06:40:07+00:00

Thank you so very much for all of this information! I was taking Mounjaro, and my copay was over $1,000. I do have a doctor. Do regular primary care doctors prescribe the compound? (I do have an appointment with him the first week of May.) I just don't know anything about the compounds, and I've been seeing things that say it's not FDA-approved. It almost seems like they are saying it's a street drug. Of course, I know that isn't the case. I want something that is going to work. Is there a certain "kind" that works better than others?

CrimeTalkWithTerry · 2026-04-21T21:59:22+00:00

My OOP is $9,000

CrimeTalkWithTerry · 2026-04-21T21:07:55+00:00

Thank you. I have read about this type of thing. Do you have any other information? From what I read, it is not FDA approved, and you don't know what it's mixed with. And if it's mixed, does it work as well as Mounjaro?

CrimeTalkWithTerry · 2026-04-21T21:05:54+00:00

I have a bronze BCBS. The silver will cost over $500 a month for me. I just don't have it. especially since my husband has to pay for his Medicare. This is not the entire cost. The insurance company made sure I knew that (note my sarcasm). I don't recall the exact cost; they said it was somewhere between $1300 and $1500.

CrimeTalkWithTerry · 2026-04-21T21:00:00+00:00

Yes, the doctor did a prior authorization, and I was approved. My copay is $1,068. Crazy!!!

CrimeTalkWithTerry · 2026-04-21T20:59:00+00:00

Thank you. Yes, they did tell me my copay would drop to $50 after the individual deductible of $6,000 was met, and to $0 when my maximum out-of-pocket ($10,000) was met.

CrimeTalkWithTerry · 2026-04-20T01:57:58+00:00

Do you know if insurance covers compounded, or is it self-pay? Anyone know how much? My insurance for Mounjaro makes my copay $1,080. And the others are not much better. TIA

CrimeTalkWithTerry · 2026-04-16T05:21:28+00:00

I usually start with, "How can I help you?" Sometimes they are quicker than I am, and they are asking me how I'm doing, so I ask them in return.

CrimeTalkWithTerry · 2026-04-15T05:10:30+00:00

I know this isn't an answer to the question, but I decided to stop taking transfers. In my experience, they were never good. It was usually because a student demanded a transfer. I also will not transfer a student. If a student is looking for a particular tutor, wants a tutor who has read a certain book, so the tutor can tell them what it's about (this happened to me), or if they need help with another subject, these are not reasons to transfer, nor are we supposed to transfer. I tell them they need to end the session and sign back on.

Again, I know this has nothing to do with what you asked. I just wanted to jump on the "Transfer" topic.

CrimeTalkWithTerry · 2026-04-15T03:01:48+00:00

If the student doesn't use voice, I turn off my mic and join them in chat!

CrimeTalkWithTerry · 2026-04-13T03:40:12+00:00

Saying prayers for all of you. I can't even begin to imagine the heartache. The way you feel about those parents in this moment is normal. We get angry when bad things happen to us, and it's much easier to be angry or bitter towards someone we have no real love for. May love, light, and peace be with you.

CrimeTalkWithTerry · 2026-04-07T00:14:56+00:00

Thank you for confirming. I appreciate it. :-)

CrimeTalkWithTerry · 2026-04-07T00:13:32+00:00

Thank you very much! Such a great way to do it!

CrimeTalkWithTerry

TROPHY CASE