My Myectomy in Boston is done!

[dughr]

Hello all!

I am glad to be able to be back here to report that I made it! The long awaited surgery to reduce my septum went great. On July 22nd, Dr. Dearani of Mayo clinic assisted Dr. Rastagar of the Tufts/NEMC surgical staff in performing their first 2 Myectomies done back to back. Another gentleman went in the morning, I went after lunch and we both came out of it very successfully. My gradient went from 100mmHg to 0mmHg when provoked chemically. I will do a follow up in 4 weeks but my septum is now an average of 10-11 mm versus about 26mm prior to surgery. I am home recovering now and aside from the lingering persistant cough that I had from the CHF prior to surgery, my scar is minimal, and pain level is good (except for the cough part). I am very happy with the results so far and am glad that Boston will now have a new expert to perform this surgery in addition to Mayo and Cleveland. Thank you to everyone who supported and gave me information enableing me to make this decision. Thanks to Lisa for all your help and I wish I was a little less loopy on the drugs when you came by so I could have talked to you more. I continue to progress and look forward to the next few weeks when I will get my wind back again.

Best regards,

Doug
Boston Myectomy July 2003

[Lynn Stewart]

Hi Doug!

Congratulations on a succesful myectomy! I wish you all the best in your continued recovery and progress!

Lynn

[Linda]

Congratulations, Doug! We'll all be looking forward to progress reports. Linda

[Lisa Salberg]

Doug... You were doing great when I was by your room. I hope you have gotten some more sleep ;-)

Best wishes for a speedy recovery!

Lisa

[paix]

Doug,

Excellent news! Hope your recovery continues to go smoothly :D

Elizabeth

[Margie]

Doug,

Great new! I'm so happy for you. Take it easy and enjoy your new
found freedom. Keep us posted on your recovery.

Take care,

Margie

[Pam Alexson]

Hi Doug, I am so happy to hear that you are doing well, very well as it appears. It was so nice of Lisa to post an update as to how you were doing so soon after the procedure. I was anxiously waiting. Dr. Maron called me on Thursday to see how I was feeling and to hear about my visit with Dr. Rastigar. He reiterated that the two myectomies went very well and he was very pleased for all involved . He is so nice and very reassuring. Says when I am ready he will see me through the whole process. I am taking my time as you and all have suggested working on things to get ready ; physically, spiritually and mentally . I am sure my choice will be right when I am ready to go. I am actually finding it a little more of a challenge to get those around me ready and on board reality wise. I have always been at the helm in everyones life and they take alot of cues from me I am finding. They'll come along I am sure. Hey did you ever learn how many myectomies are actually done per year in the US or is this a useless fact that I just need to know . Does anyone out there know? Well Doug get lots of rest and keep on healing best wishes to you. Pam

[Lisa Salberg]

I would guess about 120 are done each year in the USA - with Mayo and Cleveland doing about 100 and the rest here and there... I think we will be seeing Boston step up to the plate and share in some of those very soon.

Be well,
Lisa

[gabs]

I was just wondering how long the waiting period for your surgery was? My husband has been told that he needs a myectomy, but the waiting list is at least 9 months, probably a year. I think that the waiting is worse than the surgery! We have considered having it done in the states and paying for it ourselves. (we live in Canada). Thanks for any info.

[connie]

:) Hi Doug...........
So glad to hear its over and you are doing well. Good luck to the future...........

Connie

[Sarah]

Dear Gabs,

The US system doesn't have a waiting list like you know it.

Once you decide where to go, you get put on their schedule. I know one person here who was at the specialist's for the first time and there was on open spot the very next week, so they took it. Each center has their own schedule.

In general, it just really depends on when the doctors can find a spot for you. Sometimes they can take you that week and other times you may have to wait a month, maybe six or eight weeks tops.

Also, depending on how severe your case is, they will try and make room for you. But if Canada is making you wait that long, you probably don't need the surgery next week.

It may even be possible to choose where you go based on when they can take you.

take care,

s

[dughr]

Connie, Thank you.

Gabs, The wait for me was about 6 weeks. There were only scheduling conflicts that made it go so long. When it is time to get a medical intervention, it is time. The docs usually don't waste much time. Question them why so long. Make them tell you why the wait and if the waiting is for no good reason then look elsewhere, if they think that medically it is a better move then it probably is. When it comes down to it, you know what is best for you. Get all the information you can and make the most sound decision for you.

Doug

[Sarah]

Dear Doug,

The wait for Gabs is long long because every single person in Canada who needs a not-immediately-life-threatening procedure gets put on the same surgery waiting list. A friend of mine's dad waited 18 months for hernia surgery. This is just how it is done there. Unless your situation changes to critical, you don't get to jump the line. She can't go to a different hospital and get in a different line (unless she comes here).

For example, in Canada, my aunt (whose condition is almost identical to mine) sees her cardiologist once every THREE years. I see mine at least once a year and sometimes twice or three times a year.

S

[dughr]

Hi Sarah,

I see. I knew Canada had a different health care system than ours. A Canadian friend of mine told me a little about it a few days ago. I guess there is a price to pay for guarenteed health care.

Doug

[Glen Beamish]

Sarah, Where is your aunt??
I go to see my HCM specialist once a year and my condition is not nearly as bad as most with HCM, so I am not life threatened.
The only time I've had a problem with scheduling in all the years I have been seeing Dr. Wigle in Toronto is during the SARS scare and I was pushed back a few months.

[Robbyn]

I too am on a a waiting list for a myectomy in Canada and although it is hard waiting - I see my HCM specialist 2-3 times a year and if I have a concern I can call (as I live 2 hours from his office). He has me come for an echo every three months and altough I don't always see him he communicates with my GP and I go and see him. Although I would like to be having surgery sooner, that's the way it is.

Robbyn

[Lisa Salberg]

How long will you have to wait for your procedure?
Lisa

[Robbyn]

Lisa - I will have to wait at least 6 months. I have CHF and probably a Mitral Valve will have to be replaced. My 21 year old daughter passed out at work yesterday, along with arrythmia. And I'm fed up and scared for my daughter.

[gabs]

Hi Robbyn. Where are you having your surgery? My husband is having his in Toronto.

[Lisa Salberg]

I am sorry to hear about your daughter. Is she ok? have they thought about an ICD?
Call me if you need anything.

Lisa

[Glen Beamish]

Robbyn, I am also sad to hear about your daughter. It's bad enough to have to worry about your own health without having to worry about your daughters as well.
It touches a nerve close to my heart to hear this as my daughter is also 21 and thankfully clear.
I can only imagine the anguish your going thru.
Is she seeing Dr Wigle as well??
Robbyn, I pray for both of you that your outcomes are both positive.
Good Luck and Stay as well as possible.

[Robbyn]

Gabs - I am having my surgey at Toronto General.

Lisa- Thank you, she is not well, no diagnosis yet.

Glen- Yes my daughter is seeing Dr. Wigle. She is going tomorrow. I HOPE she doesn't have this. I am one thing, but not the kids.