Hello from an OG member -- Its been a long time

[dughr]

Hey everyone,

I have been on a break---for a few years!

So much has changed over the years and I had to step away from the group for various reasons. I just dropped in this morning to see how my old buddies were and see there are a ton of new people who I have never met! I am sorry you have to be here, however, you know by now you are in good company.

I was the first myectomy at what was at the time New England Medical Center, now Tufts. That was in July 2003. I had a rocky road for a few years but am finally stable I think. All signs pointed to eminent transplant a few years ago and then my E.F. stopped dropping. It never came back, but it never fell below 30. I continue to take Atenolol and my A.C.E. inhibitor and haven't changed my meds now in over 4 years. I still get to go see my old buddy Dr. Maron once a year only now...come to think of it, I think I am due!

Anyway, I just wanted to say hi and for all the people struggling with this disease, there are some of us who manage to trudge through and although I am never going to be able to do what I used to do, it seems to have leveled out now and I am happy in my routine.

Best wishes!

Doug

[maztbo]

Re: Hello from an OG member -- Its been a long time

Hi Doug,
Nice to meet you,it does seem to be a great group of people here forced together by an incidious and unpredicable desease. I'm sort of new here and I'd be completely nuts if I didn't get the support that everyone has shown me.Glad to see you're in a stable state and that you've a satisfactory routine in life, Keep on keeping on!
John F.

[Linda]

Re: Hello from an OG member -- Its been a long time

Doug - Good to hear from you again - Linda

[Cynaburst]

Re: Hello from an OG member -- Its been a long time

Doug - Glad to hear that you are stable and back to a normal way of life. I know that you were feeling discouraged when you left us.

[Moosedreams]

Re: Hello from an OG member -- Its been a long time

Doug:

Nice to meet you. I'm a newbie so we never met before. Glad to hear you are stable. Fickle disease.

Sounds like you were a pioneer for many of the rest of us - thanks!

Toodle pip... Moosedreams

[gfox42]

Re: Hello from an OG member -- Its been a long time

Hi Doug,
Glad you're here!

Gordon

[mtlieb]

Re: Hello from an OG member -- Its been a long time

Hi Doug, glad to hear that you are doing well!

[mbcube]

Re: Hello from an OG member -- Its been a long time

Welcome back doug!

[Toogoofy317]

Re: Hello from an OG member -- Its been a long time

Welcome back! I did a quick search last night and saw some posts on there from Rob and I realized how much I miss him! That was a tough time for me and I took a step back as well guess I was scared that would happen to me. but, we are still here right?

Mary

[Pam Alexson]

Re: Hello from an OG member -- Its been a long time

Hi Doug. Its been a long time other then I see you on facebook. I was just talking about you to one of my daughters the other day; reminiscing and wondering how you were feeling and BAM you posted on the message board. Strange how those things happen huh? I will never forget how you helped me. One important way by coming to see me after my myectomy October 2003. Really you helped me see there was a light at the end of my tunnel.
So glad you are doing well and only have to see our friend 1x/year.. I still see him about every 4- 6 months. Though my EF remains around 50 I continue to experience a lot of HF symptoms. Recently, adding another diuretic to the regime is kicking me but I will endure to see it through.

Keep doing well and know that you are thought of often and fondly.

Pam

[Loutinmanswife]

Re: Hello from an OG member -- Its been a long time

Hi HCMA
I've been on a little break myself. Thought I would pop in today and see whats new. I have been doing pretty good after my Myectomy at Mayo with Dr Schraff, he was amazing, the whole experience was amazing. Sometimes I still have pre-syncope symtems, but I'm are doing ok. I have come off a lot of medicines, So with that alone I feel much better. Hope to continue with good progress. Thanks for all info and good advice.
Tina

[Lisa Salberg]

Re: Hello from an OG member -- Its been a long time

Doug!!!!!!!!!!!!!!!!
you just made me smile! so good to hear from you. I had been thinking about you a week or so ago! Well sounds like its been a rocky road... but you are still ON THE ROAD!!
BIG hugs and THANK YOU for coming on in to say hello!

Best wishes,
Lisa

[dughr]

Re: Hello from an OG member -- Its been a long time

PAM! Lisa! Mary! And to the new friends, hello.

Pam, I think about you and had hoped things were going well. Lisa dropped in on me when I was just out of being dissected by Rastigar and I know how much it meant to have one of the "team" drop by. I am really happy to have been able to check up on you and glad I was encouraging!!! I wish I had the chance to talk to you more Lisa, and that was now 8 years ago! But I am still kicking and causing troubles, so its a good thing.

Thing is, I drop by and read Rob's wife's blog at odd times and remember how much it effected me to be a part of people's life like Rob who were here for us only to slip away all too soon. I had just read his blog again and had to come and say hello. I am grateful for all the work you all do and know it helps people, but more important, you help SAVE LIVES! I would not be here without the information I got and connections I made.

XOXO!

Doug