Jonathan tested positive...

[Bert]

Well here we are at the end of the testing road with a positive diagnosis for Jonathan. It was based on the MRI results which showed a small area of thickness in the septum. Even after a normal echo, it has been determined that he has the disease which should be a concern for all of us. We can implement mass screening programs all we want, the echo is no longer the "gold standard" for diagnostic purposes. MRI should be the only test based on our experience, and nothing else should be trusted as it pertains to borderline cases especially with young athletes. In any event, this should make for a good topic of conversation at next HCMA conference.

So where does this leave us? Well honestly still wondering about everything pertaining to this disease. It's going to take awhile to let this sink in as we haven't told Jonathan the latest results yet. One thing for sure is we don't know who to believe, and this whole sequence of events has us wondering. Ironically the measurement that came up on the MRI was 17mm which was the same value on the very first echo he ever had at our local hospital. Makes you wonder doesn't it? If you don't test you don't bring in revenue, and if you don't bring in revenue you don't have a clinic. Getting approval for any of this from my health insurance company was never an issue, so one has to wonder if this emotional rollercoaster we went on was all that necessary...

For now we intend to live as normal as possible. Reliable risk stratification by the medical community remains a major challenge, but it also stems from the fact that most of the data on risk stratification have been compiled at referral institutions and derived from selected population known to be at high risk. At least Jonathan does not have the signs, the family history, nor symptoms that put him into a high risk category and can probably continue to be active. How much will be the million dollar question. We intend to let him live his life. He's not into the fine and performing arts so trying to change him as a person will be futile. We'll obviously have a serious conversation with him about warning symptoms and so on, but we intend to let him enjoy life as he knows it.

One might say that we're not willing to accept it. Nevertheless, I still believe that more people live normal lives never knowing they have this disease and don't live with a cloud over their heads. I also firmly believe that when you bring testing/screening to healthy people, those who become test positive become sick people...

You can call me crazy but enough is enough. Sign off...

[Reenie]

Re: Jonathan tested positive...

Bert, I am very sorry to hear what your final diagnosis is. I'm sure that you are still in shock. I can hear your hurt and frustration and anger in your post. I believe in God so remember that when you read the next sentence. I believe all things happen for a reason, even though we don't often know what that reason is.

My husband's diagnosis was a very frightening thing. Not only was he "sick" and "could die" but he might lose his job over the diagnosis. He was/is active duty Air Force. They rarely let anyone with a condition as potentially serious as HCM remain in active duty. Just a month before the tests he was out in the backyard with the kids running up and down our hill sledding. He had a bad burning and sharpness in his chest but kept on going full steam ahead. He thought he was just being a wimp and was more out of shape than he thought. Had we not gotten the tests done and gotten a dianosis (and an ICD) then he might not be here today.

I don't mean to trivialize Jonathan's condition or his life. I'm just telling you that maybe in 10 years or so maybe you'll be able to think of this as a blessing. I pray that you will all be able to accept this and remember that most people with HCM live long and full lives. To quote someone else on this board, "A lot of people on this board are here because they are newly diagnosed or are very sick." That doesn't account for all the people with HCM who live their lives every day, whether knowing they have HCM or not knowing, and never finding us. We are here for support as well as for information.

If you need to talk, vent, cry, or just read, we will be here. Please let us know if there is anything we can do.

Reenie

[Lisa Salberg]

Re: Jonathan tested positive...

Burt and I talked for a long while this morning and I know he is in a great deal of pain now.
I do want to make a few comments about the posting - 1. echo is the gold standard and is highly reliable in detecting HCM. 2. MRI's are very helpful in evaluating questionable cases, they are not used often due in part to the cost of such tests and are therefore use in thoses cases that a doc. may feel they need more data to get to the bottom of a situation. 3. No I do not think doctors test for the money (OK maybe some do..but hey there are good and bad in all professions...but in this case NO over testing was done). 4. In this case every effort was made to clear the diagnosis of HCM...and it was close... but the MRI did show the measurement of 1.7 and with all of the rest of the tests and information..well it IS HCM.

I know Burt would have been happy with a the news that his son did not have HCM - and then the tests would be the "good guy"...but the tests gave bad news and I do not blame Burt one bit for being upset at this time.

Now here we are with the diagnosis... what next?

This is hard..yet not, get on with life..LIVE, have fun, enjoy yourself, protect yourself, be smart, be cautious, learn to LIVE with HCM.
Yes, some things may be different now...but things could be a great deal worse and we all know it.

My heart is with you and your family. I know you love your son very much and want the best possible future for him. I make one suggestion, do not make HCM the enemy - do not be bitter because of it - that will not help your family to focus on your future... and your future can be very bright!

We are all here for you!

Lisa

[Linda]

Re: Jonathan tested positive...

Bert, you and your family have really been thru the mill and it just totally drains you. I can't think of anything to say to make things better, but we're here for you and all those others who are on this seemingly out of control roller coaster. Your nightmare story and so many other stories of nightmare quality are what makes us keep working so hard together as an association to make things better for the future. I do hope that the presence of the HCMA and support from those on this message board are helping you and your family in dealing with all these ups and downs. Your son is very fortunate to have the love and support of such caring parents and you will get thru, one day at a time. We're here, we care. Linda

[Bert]

Thank you all!

I just want to thank all of you for caring so much. I had a great conversation with Lisa yesterday and will try my best to put us on the road to emotional recovery. Take good care.

Bert

[Glen Beamish]

Re: Jonathan tested positive...

Bert, I know this is a bitter pill to swallow and I can completely relate to your reaction because along with all others who were diagnosed I also suffered from post diagnosis anger.
Leave the testing and testing for profit behind, they mean nothing now, Jonathan has HCM, so focus on the future not the past, it ain't going to change.
I don't know if letting him live his life as he choses is the best stradegy right now. I don't know how old he is, but young athletes tend to believe they are bullet proof and he may not completely understand or believe the ramifications of hard competition even if expained to him.
When I read or hear about young athletes who drop dead because of HCM I consider myself extremely lucky because in high school I didn't know I had HCM and did track & field, football and even after high school just before my diagnosis I was running 5 miles several times a week and playing baseball for two teams.
When I was diagnosed (early 20s) over 30 years ago I was told to stop activity altogether.
I was devastated hence the post diagnosis anger. I suffered anxiety for the next year. I cannot tell you how many times my wife had to drive me to the hospital because I thought I was going to die. I would not go anywhere unless a hospital was fairly close. After a year of this I decided the aniety would kill me before the HCM so I decided not to let HCM control my life but I would control it.
I didn't go out and start running again, that type of activity was done.
I looked for other ways to live, I started hobbies like woodworking and now build my own furniture, I also built my own cedar strip canoe, an extremely satisfying hobby that I may never have gotten into without having to change my life.
As time went by and they knew more about HCM my doc allows me moderate exercise. I went back to playing ball in a recreation league where I thought I would not have to go tearing around the bases, although I have to admit when you hit the ball you tend to run like **** anyways.
I took up cycling and now 20 mile rides are not unusual for me, and as I mentioned in other posts, June 1 I am going into a cycling event, 30 mile, oddly enough for the Heart & Stroke Foundation.
I also canoe and golf a lot. I pretty well do as I please knowing my limitations. I look back at that decision to control my life and not wallow in depression as the defining event in my life and I have no doubt the experience has made me a better person. Life was not over for me, I just had to find a different way to live it.
Enough about my life history and sorry for being long winded, but I want to show you that yes Jonathan should make some changes and yes it may lead him down a different path than the one he wants, it may lead him to something or somewhere he never thought of and be just as fulfilling for him and you.
Remember we were put on this earth for the experience and some of us get to experience more than others and in those cases how you handle it will make you who you are.
I know this is not the case in every HCMer, but Jonathan's situation sounds very much like mine.

[sueb]

Re: Jonathan tested positive...

Glen--I hope Jonathan gets a chance to read your post. It's a classic case of needing to grieve and then picking yourself up and getting on with your life--and in such a constructive way. For a boy to lose what must really seem to be his whole life must be awful; as a kid one has such a short perspective on life. I would hope that your perspective and that of some of the other guys who have lived through this would be a comfort to Jonathan---or at least a promise that comfort may come to him in the future.

[Robert Hartwell]

Re: Jonathan tested positive...

I agree fully with Glen. I can't say that I was angry when diagnosed, mostly scared about what it meant. I guess I reacted by climbing into a hole of inactivity. I remember lots of weekends sitting in front of the TV for both days.

Thanks to some very special people, and a bit of deft surgery, I have taken back my life. I am actually more active now then I have been most of my life. There are limits of course, but each of us, must make the decision about our life. Others can give opinions, but we control how we will live.

Bert, give it some time, I know that you and Jonathan will be OK. We are all here for you guys.

Bob

[Bert]

Re: Jonathan tested positive...

All your comments are well received but the process that we were put through is still a little odd. If you think that a 17mm septum was a close call then think again. After 2 echos from a world renow HCM clinic show uppernormal readings at first and then normal readings after deconditionning, then perhaps they need to retraining in interpreting echos.

It's also strange how the pattern worked. You go to the clinic, you're told great news, but then you always get a phone call. Much easier to discuss from a distance than face to face I guess.

The other thing I'm uncomfortable with was the fact that Jonathan's case was discussed by "world experts" at the HCMA booth during a conference within erashot of non-medical people. Isn't that breech of confidentiality?

There is more to this story that I could share and things we were told that would make you wonder.

[Sarah]

Re: Jonathan tested positive...

Dear Bert,

It is very unusual for anyone to go through what your family did. I don't know all the details, nor should I. From what you have said, it sounds like your son's situation was very difficult.

If you feel your confidentiality was breached, you need to address the doctor about it and if you feel that you/your family didn't get the level of care you expect/require, then you should see someone else. Don't tar all the specialists with the same brush --they are all very different.

There are other HCM specialists out there and we can certainly give you contact info for them.

If you think we should strike this doctor from our specialist list, then you need to take that up with Lisa in person and not on the board.

And while I agree that it really, really, really sucks that you were told "all clear" when it wasn't, please don't let that anger eat you up. I lost my dad to medical malpractice and my mother is permanently disabled from malpractice as well. I've almost died on a number of occaisions myself. However, I have managed to find doctors I respect and allow to take care of me.

But, honestly, the bottom line is that even if you go to the "best," it is still possible to experience mistakes and problems. There is one center that I have personal experience with --all good--where I know of someone who had a terrible time. The odds of having an awesome experience at a major center is light years higher than you will find at your local hospital.

How is your son?

S

[Bert]

Re: Jonathan tested positive...

Dear Sarah,

Jonathan is doing just fine but we haven't figured out a way to tell him yet. He's feeling great and has been active as always. We're just afraid that once we tell him he'll start to go downhill because the mind has a funny way of doing that. As I always said when healthy people are told they are sick, they become sick.

Anyway, I'm not taring everyone personally here and I'm certainly not mentioning names either. If I only had time to take you through the sequence of events without being logged out you too would be amazed and suspicious. When you're told that HCM is not even being considered any longer but that they'll call you about other findings, as if they just want to dismiss you, you've got to wonder.

As far as confidentiality is concerned, health professionals are required by law to maintain the privacy of our health information. From what I understand even my fathers failing health was mentioned in the booth at the ACC Conference as an ominous sign. My father checked with his cardiologist and reassured me that his condition was totally unrelated to Jonathan's diagnosed condition.

I certainly don't want to undermine the whole HCM community and more specifically the website. I know that it serves a purpose and in some instances is the only support mechanism for a lot of people. My heart goes out to them believe me. The only thing I resent are people taking advantage of others emotions for their own personal gain, whatever the purpose may be.

By the way, I've requested written reports from the clinic with names of other specialists supposedly consulted on this case. I have yet to receive anything and wonder if I ever will. If I don't soon then I may consider submitting a written complaint with the U.S Department of Health and Human Services. We'll see...

[Lisa Salberg]

Re: Jonathan tested positive...

Bert,
Information received by the HCMA is held as private information, if done so in a private manner - for example - private email, Personal Message, letter or phone call. Information shared on the message board is not held a private as the individual has chosen to place the information in an open form.
While at medical conferences, such as ACC, many topics are discussed. In the event a patient or “case” is discussed it is always done so WITHOUT names or identifiers, this is common practice. The last thing anyone wants to do is to compromise patient confidentiality in any way. The HCMA as an organization run by patients is extremely sensitive to the importance of confidentiality.
It is very common for doctors to seek out peers to discuss cases that they find unique and challenging, this helps them learn. If you would like to see how this is done you can log on the ACC’s or AHA’s website and order tapes of conferences and you will see at the end of many talks questions are asked about various patients...using basic information – such as 15 yr old boy with questionable hypertrophy and a history of high blood pressure – Then continue with the question of fact that they find complicated. This is “standard of care” and this is how doctors learn.
HCM is a small community and one that has a wonderful network of people that are happy to help each other, for this we must all be grateful. It is very common for doctors to discuss specific “cases” and in turn this data is used to help the patient.

Bert, I hope this help you understand that your sons confidentiality was protected at all times.

Lisa

[Pat]

Re: Jonathan tested positive...

Dear Bert, Lisa, and the rest of you,

I simply want to say that last Fall when Dr. Shah told me he had discussed me with the other HCM experts at the Minneapolis Symposium I was THRILLED!!! For me that meant (1) he was very interested in what he found in my heart (and, thus, in me), (2) he was humble enough--and competent enough--to ask others for their opinions, and (3) he used the feedback he got in making his recommendations for my care.

For me this meant I had the advantage of the expertise of maybe ten or more HCM specialists. I felt blessed.

Pat

[Bert]

Re: Jonathan tested positive...

Lisa,

I'm familiar with the HIPAA (Health Insurance Portability and Accountability Act) regulations. I'm fully aware that although there are limits on use of personal medical information, the rule does not restrict the ability of doctors, nurses and other providers to share information in order to treat their patients. That's obviously common sense.

Nevertheless, the regulations do protect medical records and other individually indentifiable health information even if it is communicated orally. I don't know how the case was discussed and under what circumstances at the ACC Conference. YOU were the one who told me, during our recent phone conversation, that I would have been proud to see all of these experts discussing my son's case at the HCMA booth. I guess I just wish I had heard it from the specialist we've been working with. That's all...

[Lisa Salberg]

Re: Jonathan tested positive...

Bert - in order to keep your sons matters private I have PM'ed you a note.
Lisa