More confused than ever

[Abbygirl2]

Hello everyone,

I had my 'second opinion' appointment with a new cardiologist on Monday(actually it was postponed until Tuesday).

After travelling 5 hours, I get to my appointment to be told the Dr couldn't make it in that day. So we reschedule for for Tuesday. (Unexpected hotel costs-and some phone calls to find someone to watch the kids overnight).
On Tuesday, they inform me they have not recieved any of my tests(EKG, holter,Echo) from my GP. So the Dr really had nothing to look at. He had not scheduled me for the stress test(that I was promised I would be getting), so all I had done was the EKG. Which apparently looked fine.


This Dr was pretty good though, he knew alot about HCM even though I do question some of his ideas. He rescheduled me to come back in 2 weeks and said he would do the stress test etc.

So basically other than sitting there talking we didn't get far. I am ticked at my GP for not sending him the tests.

The one good thing that came out of this app, is that this Dr said he kind of branched off into the study of HCM, and he said that Dr Wigle(Toronto) was his mentor. He said he would get me a referral to Dr Wigle if I wanted.
He will be joining Dr Wigle in Toronto for a few weeks in August and said I could see them both down there.

Anyway, I didn't learn much, got few of my questions answered, and still feel like ****. He set me up with a loop recorder but I haven't used it yet.
He claimed that Atenolol was best for me and that all the BB would both lower my heart rate and BP so there was no sense in switching(at this point).

Well, I have more to say but have to cut this short-I have to pick up my little guy from speech therapy.

Thanks for listening...
Pam

[Laoshur]

Dear Pam,

Sorry this was so frustrating!!! I would like to hear what strange ideas this new cardiologist has. It sounds like a joint visit in Toronto would be a good idea.

Best wishes,
Rhoda

[Abbygirl2]

Hi, I am back now, some of the things I questioned were... He said that being really overweight can sometimes cause HCM.(This ones new to me-although it doesn't fit me anyway, as I am not very overweight(although am a bit ;) ) Plus I have only gained the weight since being diagnose.

Also, he questioned whether I even have HCM because I didn't have any risk factors...HUH?? He said he would have to see for himself and judge based on the criteria.
Ok, I have an enlargement(small though it is), I am obstructed, plus I have all the symptoms.
Maybe he's just playing it safe as he can't very well diagnose me without having seen my echo(thanks to my GP).

He said that a chemical stress test and regular stress test are 2 completely different things, so he was quite surprised that my regular card. never gave me a stress test.

He also said that Amyl Nitrate should never be administered in a clinic-only in the hospital as there are sometimes serious consequences. Now I'll be freaked out about that.

He also said that I need an echo ever year regardless(we have to watch my gradient), whereas my regular card. says only every couple yrs(as there has been no change in the past 6 yrs).

I am so confused and not sure what to do. My regular cardiologist is the head of cardiology and works in a large center in a larger city, this new guy though he seemed more thorough, worked in a small dumpy office, which really needed to be cleaned(and organized). The whole office seemed unprofessional, and unorganized.

Who's opinion do I trust, where do I go from here. I would really like to see a specialist but I can't right now, hopefully soon.

One good note is I finally got my (HCM)book and have read it cover to cover. Very informative.

Give me your opinions please. And yes I will try to get to a specialist!! I just don't know which cardiologist to stick with and who to belive(and trust).

Thanks all,
hope your all feeling great!!!!

Pam

[Reenie]

Ok, you want opinions, right?

1. A doctor who thinks that atenolol is the only medicine that will work for you without having tried others isn't doing you a good service. Everyone metabolizes meds differently and just because other drugs might be beta blockers too, that doesn't mean you'll react exactly the same with each of them.

2. HCM is NOT NOT NOT caused by being overweight. If you have HCM, then it's a genetic mutation that caused it. You can be 5'6" and weigh 125 lbs and still have HCM, obstructed or not.

3. You don't have to have risk factors (I assume you mean for sudden death) to have HCM. There are a lot of people out there who haven't fainted, had a drop in BP, had family members die young, had v-tach, and have septums <3 cm and they still have HCM.

I've said enough for now, but those things just jumped right out at me. Remember, you asked for opinions. :)

Reenie

[Glen Beamish]

Pam, if you can get that referal to Dr. Wigle, I would do it.
You are getting mixed from messages from doctors who know little too not much about HCM.
Dr. Wigle has been my HCM doc for 30 years now and I recomend you try to see him.

[Abbygirl2]

Thanks all for your replies(and opinions) ;) I have decided that I am going to stick with the information I already know to be true via Lisa and the rest of you all.

One more thing I forgot to add earlier. Apparently when my brilliant GP sent the referal letter to this new cardiologist, she said(in the letter) that I had dilated cardiomyopathy. I have been seeing my GP for 2 yrs now and she STILL can't remember the name of this condition. :roll:

Ah well, I got a good chuckle out of it all, the whole trip was such a disaster!! Live and learn. :)

Take care,
Pam

[Burton Borrok]

Dear Pam,
You remind me of the man who had a watch, and always knew exactly what time it was, while his brother who had two watches was never completely sure which one was right.

The best solution I can see would be for you to become completely conversant in HCM and your particular set of symptoms, so that you can take the lead in obtaining the proper tests and medications to fit your personal needs.

Glen’s advice to work toward seeing Dr. Wigle sounds like a good move to me
Burt

[Dana]

Hi. I'm fairly new to the board but I just had a second opinion Thursday with a Dr. from another cardiology group in town. I did it because my cardiologist suggested in January that I have an acohol ablation done.
This doctor said from my records that I have concentric HCM and I don't remember hearing that specific diagnosis before so I hear you when you say its confusing. He also said because of that, he doesn't see where ablation would help. What I really liked about him was what else he said --- if I had been his patient, he would have advised me from the beginning to be seen and evaluated at an HCM center -- which is exactly what I was planning to do next.
Dana

[Reenie]

Hi Dana. I'm glad you've found a new doctor who agrees that a visit with an HCM center is a good idea. Please keep us posted.

Reenie

[Abbygirl2]

Hi Dana, That was one thing this new Dr said that I was happy about. I know I need to get to a specialist, and hopefully I will be more certain of where things should be heading with me. I hope you get a chance to see someone soon, good luck. Nice meeting you.

Take care
Pam

[Lisa Salberg]

[quote="Abbygirl2"]Hi, I am back now, some of the things I questioned were... He said that being really overweight can sometimes cause HCM.(This ones new to me-although it doesn't fit me anyway, as I am not very overweight(although am a bit ;) ) Plus I have only gained the weight since being diagnose.

Right here I have some major concerns! HCM is genetic, your weight has nothing to do with it!

I would question him on this before moving any further.

Lisa

[Abbygirl2]

His belief was that most(98%) of HCM cases are genetic however rarely an individual can have HCM from an entirely different cause, some unknown as to date. Although I know obesity is not the case for me, we have not yet nailed down why I have it. It could still be genetic(me being the starter) but I don't think he wanted to rule out anything at this point.
When a genetic condition springs up out of nowhere, there are many questions....like OK Who is my REAL father. LOL :)


Also I have come across some information that has made me wonder why HCM was the automatic diagnosis. From my understanding it should take more than an EKG and echo to diagnose HCM. Catheter, biopsy, stress test, are all important tests, none of which I have had.
I am definately going to question him on the obese factor, he isn't convinced of HCM based on ECHO and EKG results(which he did not see for himself.) If I come out of his office with a different diagnosis or reason to doubt HCM, I will scream!! I don't doubt I have it, 2 cardiologists have agreed on that much, BUT this guy studied under Dr Wigle, how can I NOT believe what he says?

I am lucky enough to come from a healthy family other than some high blood pressure and thyroid disorders, everyone is in great shape. Everyone in my immediate family has had echos, including grandparents and some aunts. So far both my kids are clear, so I have to wonder why, even though I know it is possible to be a 'mutant';).
I wonder what the percentage of HCMer's with genetic form versus 'mutant' form are.

I can't help but think of all of this every waking moment...ugh I need a break.

Take care, and I hope everyone had a great day.

Pam

[Laoshur]

Dear Pam,

Happy belated birthday!

I see you are still online and I think it is very late at night there, so I am concerned that you are still struggling with the feeling that you cannot ever forget HCM. It is certainly true that this condition will force itself on your attention more than you like, but I know you often think of other things. You thought about your family's love, you thought about picking up your son from his lesson, etc. So, I think there is something significant there. When you think about others, you cannot always think about yourself. So, I will pray that you will be able to pour out your love to others so that somehow the HCM will at least sometimes be able to be ignored. I know for myself as I pour out myself for my students here, I forget the difficulties I face and the big decisions ahead of me, at least for a few minutes.

Rhoda

[Reenie]

Also I have come across some information that has made me wonder why HCM was the automatic diagnosis. From my understanding it should take more than an EKG and echo to diagnose HCM. Catheter, biopsy, stress test, are all important tests, none of which I have had.


Catheter, biopsy, and stress tests are not part of the diagnostic tools for HCM. Biopsy in particular isn't a common occurence in HCM to diagnose, partially because you can take a sample in a part of the heart that doesn't have myocardial disarray. Stress tests are to determine whether or not your blood pressure drops under exertion and whether or not they can produce a gradient when there isn't normally one. Catheters have been used to try to determine the risk factor for sudden cardiac death by arrhythmia, but it's an almost useless tool for that application. If they are looking for obstruction in your arteries or some other cause, it's a great tool to have. Most doctors will agree that echos and EKG's in conjuction with echos are the usual tools to determine HCM. I hope this clears things up for you.

Reenie

[Burton Borrok]

Dear Abbygirl Pam,
(We have a few Pam’s now, and I want to be straight.)

I’ve done a little research on HCM – as most of us have, - and I’ve come to some thoughts on the matter. HCM is a genetic disorder for sure, but then G-d, Mother Nature, Evolution, Random Selection, or whatever you wish to call it, is always playing little games with our genes. It is quite possible for someone to be the first one in their gene pool to develop the disease. Sometimes this gene deviation will be passed on, and occasionally the original gene design will return for the children. (The deviation will not breed true.)

Another little trick this gene deviation can do is to ‘hide out’ for a few generations of ‘carriers,’ and then pop up again when there is no living relative who also has it. Don’t forget this disease has not been identified for all that long a time, and gene research on it is still underway. If I can make some observations along the way – Your dad is your dad. Who your genetic father might or might not be is of no consequence at all. My mother and at least one of her three sisters had heart problems, but nobody died young so where I got the disease is also anybody’s guess.

Where you’re doctor got the idea that obesity might have something to do with it in some cases, I have no idea. But since obesity can also be a genetic disorder, maybe some researcher somewhere was looking at the possibility of a connection. Who knows?

In any case my dear, I believe you’re ‘one of us.’ You might just as well do what the rest of us do, which is to try and get the best control of the disease we can, and to live with it. As far as diagnoses goes, the ECHO seems to be the gold standard, with an EKG being used for corroboration. The other tests are important for defining the disease, but I don’t believe they are necessary to make the diagnosis.

I hope this settles your mind a bit. I would be very interested in hearing what Dr. Wigle has to say if and when you see him – with the test results of course.
Burt

[Abbygirl2]

My GP insisited she sent the tests but she said she would resend them. So I don't know who messed up. In all my confusion and uncertainess, I simply want a Dr who knows whats going on with me, what to expect and how to treat me. Everything seems to be moving at a snails pace right now. I really just want to feel better. My app with my cardiologist(2nd opinion) hasn't been rebooked yet and I don't see my regular card. until October.

Anyway, thanks all for giving me your advice, glad to have you all. :)

Take care,
Pam

[Burton Borrok]

Hi Pam,
I hear you about things moving at a snail’s pace.

Dealing with doctors in many cases is like cooking. If you are in a hurry and watch it, a pot of water will boil in about 27 days. However, if you wish to do something like add eggs to the pot so they hard boil as the water temperature increases, the water will boil as soon as the pot touches the stove.

If you want to see a doctor there’s often one delay after another, and then there’s other times when things happen so swiftly there’s no time to breathe. The only thing I can suggest is to call the appointment clerk and tell her you do not feel well and want to see the doctor as soon as possible – and ask her what you can do to speed up the appointment process. Try to enlist her sympathy / help. If nothing happens, call again - every few days if necessary. The clerk may not be allowed to book an appointment until your test results are in hand, and the other doctor’s staff might be the ones who ‘need a kick in the pants’ to get the ball rolling.

Let us know when you actually do get your second opinion. I truly hope it’s soon.
Burt

[karen]

When I was first diagnosed with HCM, they said I was an isolated case. There were no apparent sudden deaths, my mother had worked and delivered 3 children, and had no murmurs, and my grandmother was fine. It was not suggested that she have an echo. So for 5 years we believed that. Then I got married and decided to have a child, since the doctors told me that it would be a slim chance that my child would have it since, I was an isolated case. Well, so much for isolated, while I was pregnant my mother went in to afib, and found out she had it at the age of 53. So unless every one in your family has had an echo to say they don't have, I would be very skeptical. Dr. Wigle is one of the best doctors in Canada for this disease, and if you can get a chance to see him, it is well worth the expense. I know that I am heading there this fall to be rechecked by him and my daughter will be checked by the doctors at the Sick Children's, and it will cost close to 2000.00 canadian for air flights and motel but it is sure worth it to have a piece of mind.

[Sarah]

Hi

An echo really is the test that diagnoses HCM. An ecg may or may not show anything, but if the ecg has anomolies (particulary inverted T waves) and your echo has a thick septum and/or thick left ventricle, well, welcome to the club.

Linda is a nurse. She knows of what she speaks. The other stuff is gravy. I've never heard of anyone having a biopsy to diagnose HCM and I've been reading this board for years.

The stress test is going to help the doctor figure out if you have a sudden death risk and to see how much you can do, but it is not a diagnosic tool per se. An EPS is not going to diagnose you either, it is just a test to see what your does when it gets zapped by electricity.

I also need to point out that concentric and dilated are different animals. Concentric hypertrophy would mean that your left ventricle or your heart walls were thicker all around the middle. Dilated cardiomyopathy would mean that your heart walls were THIN and not too thick --the opposite of hypertrophic. Concentric would be a pattern of hypertrophy within the realm of the HCM diagnosis. Dilated cardiomyopathy is considered its own disease unless it is due to long standing HCM, what they call "end stage" HCM.

I highly recommend getting to an HCM specialist as these are the doctors who can tell you what you really have --HCM or dilated-- and make sure you get treated accordingly.

Take care,

S

[Abbygirl2]

We have all been checked by echo, even several aunts, uncles, cousins. I am the lone sheep. I have a LARGE family on my mothers side. No sudden deaths, or even deaths at all for that matter, we have been truely fortunate.
All but one of my grandparents is still alive and kicking(My maternal grandmother died 2 yrs ago. She did have heart problems, and had a pace maker, but she was checked for HCM and did not have it, even with a long history of high blood pressure.

I have promised myself I would not hide out indoors today since the weather is a nice 70F. So I am off, take care all.

Pam