I'm Back From Minn

[shirleymahoney Brave Heart Find all posts View Profile Close shirleymahoney]

Hey everyone

A quick note to let everyone know i'm back home, they are running some tests to Rule out other diseases but i feel it is HCM, Dr. Maron is a great doctor and the entire staff was great, i had an Echo that last over an hour, the tech did one and then Doctor Maron came in and asked and did his own.

But at the end he agrees with Dr. Gilligan that i need to talk to our local transplant team that i'm among the few percent that gets to this point

I'm glad i went, it does make my decision a little easier, i have to first go to PCP doc to have him send me over for a stress echo he wants to see how my heart with stands stress

But all in all i had a very good workover and was very please when i left and i had 3 doctors in all check me Dr. Harris and Andre i'm sorry ican not spell this mans name but if you check the board thank you very much and a big THANK YOU to Dr. Maron and the entire staff there at the Outpatient heart clinic

And a special thank you to everyone here for giving me support to even do this and giving me their wisdom

Shirley

[Glen Beamish Super Contributor Find all posts View Profile Close Glen Beamish]

Re: I'm Back From Minn

Shirely, I wish the news had been more positive, although it looks like you are accepting it and know how to move forward.
I wish you all the best of luck on this difficult journey.

[Pam Alexson Moderator Find all posts View Profile Close Pam Alexson]

Re: I'm Back From Minn

Shirley ,

Glad to see you at least were able to fathom through some of the confusion and get some answers. I too wish the news were better and that there was an alternative treatment for you . I will keep you in my thoughts and prayers that all the testing goes smoothly and that a great heart is available for you very soon.

My best to you . Pam

[mtlieb Brave Heart Find all posts View Profile Close mtlieb]

Re: I'm Back From Minn

Shirley,

I'm relieved to hear that you had such a great visit with the docs in Minneapolis! If a heart transplant is in your future, then at least you can take comfort in having a second opinion on the issue. It sounds like you had a very thorough work-up, and were treated well during your visit.

Take care,

Jim

[Burton Borrok Dearly Departed Find all posts View Profile Close Burton Borrok]

Re: I'm Back From Minn

Shirley,
I hope you got the IM messages I left for you after I had breakfast. I was running a tight schedule all day today and just got the chance to sit down and respond now.

Folks, would you believe that when Shirley was being wheelchaired to the plane some nut remarked, “Look how lazy that woman is.” I wish Ken would have blindsided him and left him on the floor out cold. Some people are just so dumb they can’t even hide their dumbness.

Obviously that really got to me. When I travel I also use a wheelchair, and I’ll bet I look a lot healthier then you do. To my knowledge no one has ever looked at me with a strange expression when I am in the wheelchair – but then I don’t much care if they look or not. I just can’t get to the plane without it.

About the result of your second opinion, I’m very glad they are covering every possible base and doing all the testing, but I’m willing to bet your going to wind up as one of our spokesman on how to get rid of a serious case of HOCM. It will take some time, but you will not only get a new heart but a new lease on life also. What an exciting prospect. I wish they could transfer my brain to a new body – now that would be something. I could get rid of all sixteen diagnoses in one fell swoop. (Maybe a twenty one year old with a great physique – I’d even be willing to face the draft again. Oh well - -.)
Burt

[Lisa Salberg HCMA CEO and Founder Find all posts View Profile Close Lisa Salberg]

Re: I'm Back From Minn

Shirley,

I am glad you have a path to follow and some answers that will help you during the process! Midge is a great person to talk with and she has done so well I am sure she will be there for you.

Take care of yourself and start the process moving - so YOU can get back to feeling better!!

Big hugs from NJ!
Lisa

[angall Member of 1000 Post Club! Find all posts View Profile Close angall]

Re: I'm Back From Minn

Hi Shirley
I'm so glad you liked all at the Mayo Clinic. I think they're great too.

Please keep us posted as to your future events.

We are all praying for you.

[Laoshur Member of 1000 Post Club! Find all posts View Profile Close Laoshur]

Re: I'm Back From Minn

Dear Shirley,

I am so sorry that the news was not better, but glad that you are happy to have had a clear confirmation of what you need to do.

We will keep praying.

Rhoda

[Midge Rollins Moderator Find all posts View Profile Close Midge Rollins]

Re: I'm Back From Minn

Shirley, I too am sorry the news was not better. As Lisa says, I am here for you. I do feel sooooo much better. Tomorrow, I am preaching at my church to tell my story and to promote organ donation. There will be one out there for you. Keeping you in my prayers.

[cynthiaG Member of 1000 Post Club! Find all posts View Profile Close cynthiaG]

Re: I'm Back From Minn

Shirley,
You've accomplished what you needed to. You saw one of the very best and now know the path to take. I wish it had been better news, but you seem like a very positive upbeat person and that accounts for a lot! I know there will be a healthy heart for you soon....take care and you will be in my prayers.

Cynthia

[Eileen2345 Member of 1000 Post Club! Find all posts View Profile Close Eileen2345]

Re: I'm Back From Minn

Hi Shirley,

I too am sorry that the news is not better. But at least you know what is going on and you can get on the list. I really hope the very best for you. I pray that you are well very soon. I wish you the best.

Big Gentle Hugs

Eileen

[mawon Pinkie Find all posts View Profile Close mawon]

Re: I'm Back From Minn

Dear Shirley,
This is my first post and first time to the website. I am glad you gave your feedback. I am still in the shocked, what is happening syndrome with my athletic son. I am scheduled to go to Minn this week for confirmation.
I wish all the best to you.

Lisa and others, this website has been most helpful to me learning more about this possible illness. Please keep our family in your prayers as we make this journey this week.

Marsha

[shirleymahoney Brave Heart Find all posts View Profile Close shirleymahoney]

Re: I'm Back From Minn

Mawon

If you are going to see doctor Maron, or any of his staff you will be in excellant hands, good luck and welcome to the board. How old is your son, my son has the disease and is doing well, he has a ICD and taking meds, again welcome to the board and keep in touch

Shirley

[Reenie Super Moderator Find all posts View Profile Close Reenie]

Re: I'm Back From Minn

Marsha, I just want to wish you the best of luck. We're here if you have any questions or concerns.

Reenie

[Pam Alexson Moderator Find all posts View Profile Close Pam Alexson]

Re: I'm Back From Minn

Marsha,

Welcome to the Hcma. I too am sorry you are having to deal with this , you , your son and family are in my thoughts and prayers.

It is an overwhelming experience when new , shocking details are revealed to us about ourselves and our loved ones and we have many questions and uncertainties. You are going to the right place. Stay connected to the support here and we are here to help.

Pam