almost too much to deal with

[vh_sd]

On Friday, my cardiologist called me on the phone to tell me that I'm at high risk for SCD based on VT seen on the Holter monitor, even though I feel perfectly fine and am very fit and athletic. Today my mother called me to say that my father has metastatized brain cancer. Obviously that takes priority, so I'll have to put off my treatment for HCM (other than the BB, which I'm already on) to fly across the country to be with my family.
My question to you is, knowing that you all are NOT physicians, how risky is it to put off treatment (ICD) for a few months given the fact that I've lived for several years with mild hypertrophy and palps and have done fine without ever fainting or pain or SOB or anything. I think my cardiologist is covering his behind a bit, because I've read several studies recently that say that 1 risk factor isn't enough to get too worked up about (unless it's family history or something major) if everything is otherwise functioning normally and the hypertrophy is very mild.
But on the other hand, if there are a lot of people in my demographic that have had problems, I of course want to take care of it immediately for the sake of myself and my family. I just don't think I have time to make a bunch of appointments right now. I am feeling very overwhelmed and would welcome any advice.
Thank you,
Vanessa

[Sarah]

Dear Vanessa,

I am SO sorry about you and your dad.

However, I want to point out a few things. First, when you are a plane and the oxygen masks pop down in front of you, they tell you to put yours on first, then help the person next to you.

Your family needs both you and your dad and while there may not be much to be done for your dad at this point, you know there is a treatment that could save your life waiting for you.

The worst part about HCM sudden death is that most of the time it is the FIRST symptom the person has --yes, death is the first time they know they have a problem. You can't go by how you feel now.

The other trouble is that they are finding out that a lot of the HCM sudden deaths are happening in people who didn't have any of the risk factors at all.

I'm not telling you this to scare you, but to explain that your doctor is not covering his behind, he is looking out for you. ICD placement at a good center is just a day in the hospital and then several weeks of not lifting your arm over your head. You can read up on ICDs in the message board through the search function.

I HIGHLY recommend that you talk to your dad and the rest of your family and figure out a plan that allows you to see your dad and get the ICD.

Best wishes for you and your family,

Sarah

[felixdacat]

Vanessa,

I’m very sorry about your father, having lost mine to lung cancer just a few years ago. Although I’m sure he will welcome your presence as he fights this battle, I doubt he would want you to put his needs first when you have some possible health issues as well.
There was some new information at our annual meeting two months ago. Dr. Martin Maron explained that they have found that 50% of the HCM sudden deaths had zero or just one of the risk factors. This was told during a presentation of a new diagnostic tool that is just now starting to be used in increasing numbers. It is called a cardiac MRI. It is hoped that the data from these tests will eventually give cardiologists a better understanding of who needs ICD’s.
My advice (as a non-doctor) would be to get to an HCM specialist before making this kind of decision. Although I may be wrong, the odds are that your cardiologist is not an expert on HCM.
I don’t know where “flying across the country” will lead, but the 3 HCM Clinics are at the Mayo (Minnesota), the Cleveland Clinic (Ohio), and New England Medical (Boston). Before making any decisions on treatment, I would recommend being seen at one of these centers. NEMC is getting a new Cardiac MRI machine and hopes to have it fully running this fall. That’s my hospital, and I’m waiting till they get that machine, however I’m post surgery so I’m only getting the MRI as a baseline.
HCM is usually a condition where rushed decisions are not necessary.

[Linda]

Vanessa,

I'm very sorry about your father and also that you have so much to deal with in your own health right now. You've been hit with a lot of overwelming information all at the same time. Take a few deep breaths and try to think through some time frames. Did your doctor give you the time you needed to ask questions? I suspect you didn't have time to think of any when you were given that news. You would probably find it helpful to call back and have a more in-depth discussion with your doctor. Talk to your doctor about what he considers an appropriate time frame for an ICD, what he thinks your future treatment plan should be, when you would be able to travel, etc. Talk to your family and find out who is available to be with your Mom and Dad now. I know you want to be with them, but maybe you have time to do both. Felix is right, your Dad will want you to have proper care also.

Have you discussed a second opinion with your doctor?

Please keep us posted - Wishing you the best - Linda

[vh_sd]

My cardiologist simply delivered the bad news to me Friday on the phone. He was somewhat patient while I asked questions, but he did almost seem annoyed at some of them. Then he said, "Sorry to ruin your weekend." That really ticked me off. He also didn't suggest for me to call with more questions later or to get a second opinion. I just don't think he deals with HCM too often.
I am definitely going to get a second opinion. I have already scheduled an appt with an expert in two weeks, and I'll just cancel it if I'm not back yet. I am trying not to worry until then - but I just get really scared because my husband lost his sister in an accident a couple of years ago and now my father is in really bad shape. I don't think my family could take it if I checked out too. But I will try to remember that the odds of me having a problem in the next couple of weeks are pretty low. I can't help but to freak out every time I feel a little skipped beat (which is something I've had forever). I really wish I could consult with an HCM expert over the phone to try to figure out how urgent this really is, but I know they probably can't do that for legal reasons. Hopefully I'll be able to make the appt with the specialist so things will be more clear. Thanks for all of the supportive words.
Vanessa

[Sarah]

Your doctor sounds like he needs a personality transplant! "Sorry to ruin your weekend?" Puh-lease.

If the Holter showed vtach on a regular basis, then the risk is the same for you yesterday as it is today and as it will be tomorrow. I don't think anyone can say the next month is clear but you should start to worry in September. On the phone or in person.

The important thing is to get an HCM specialist evaluation, talk to your family, and take long even breaths, all the while knowing that we and your family are here for you.

Hang in there,

S

[felixdacat]

Actually, when I was in similar confusing state and needed guidance, I ended up talking on the phone with Dr. Marty Maron for about an hour. He has always been generous with his time in that way.
Except for this week, Lisa Salsberg is another great (great, great) resource. She is on a well deserver vacation.
As far as local experts for you, I would take Cynthia's advice from your other thread.
IMO one of the biggest issues with HCM is the lack of expertise among most cardiologist. Your average cardiologist basically knows the condition exists. A lot of your experts...aren't.

[Largehearted]

Vanessa.

You really have been overloaded with a lot of heavy information in a short period of time. I am sorry. Since all the above posts have said most of what I would have said, I'll limit my thoughts to the ICD part.

-When my ICD was implanted I went in one day and left the next.
-I don't recall taking anything other than Tylanol for pain.
-Not lifting my left arm above my head was not a problem.
-Having the assurance that my heart will be kick-started if needed is well
worth it.

My kids, who lost their birth mom to cancer, are so happy that I have my "gizmo". I too got a second opinion. And after the initial shock of knowing that a machine would now be my constant companion, I feel downright privaleged to have the thing.

If it is needed don't hesitate.

Peace,

Leon

[angall]

Vanessa

I am so sorry to hear about your dad. I must agree with other posts. You have to take care of yourself for your dad. He will need your strength and reassurance.

Like was mentioned, you will only be hospitalized for 1 day. Then time for the healing process, but by no means should the healing process delay you from going to see your father AFTER your ICD inplant.

You have lived without anything happening, but why chance it. You owe it to your husband and children and ESPECIALLY yourself.

Please seek a second opinion and make sure that the physician is knowledgeable about HCM.

I will keep you and your father in my prayers.

[Toogoofy317]

I just wanted to tell you my experience. Please don't take it as advice.

When I flew up to Boston in Sept 2002 I was informed by Dr. Maron that I had four risk factors for SCD. The problem was I was flying out that day to go back home to be the maid of honor in my best friends wedding It was in Florida. He told me the sooner I got it the better but not to live my life as if an anvil is over my head.

So, I flew back at the end of Oct and had my implant on Nov 1,2002. I did not take kindly to the anestetics and had to spend three days in the hospital! But by the fourth day I was flying back to Florida and by the next week I was back to doing my EMT clinicals.

Just wanted to give you my experience.

mary S.

[Reenie]

Hi Vanessa. You have had lots to think about lately. I'm glad you have an appointment with a specialist soon. You're right that a lot of people don't get an ICD for only 1 risk factor, but the one you have is a biggie. I'm sure that the doctors will work with you if you explain your family situation to them. I hope and pray your dad is comfortable and peaceful and that the doctors will know how to help him. As far as the ICD implant goes, as others have mentioned, it's usually not a big deal. My husband got out of the hospital the same day his was implanted.

Reenie

[Laoshur]

Hi, Vanessa,

I had a similar situation July of last year. My father was dying, so I flew home for a few days, flew back for my ICD implant, 3 days after the implant drove (actually my husband and daughter drove and I rode) 12 hours back to see my dad and the next day he died. It was stressful, but not impossible. I did not even tell my dad why I left in the middle as I felt that it would just be worrying for him.

I will pray that you have wisdom and courage and comfort at this difficult time.

Rhoda