update on my mom

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

This is Janet...Shirley's daughter...well mom had her test done today and found out that both sides of her heart are stiff. I dont remember what the name of it is, but it was mild and the blood is not leaving the heart correctly and it is puddleing inside the heart. Which means that they are going to mess around with her med's and see if they can help her out. There is nothing else they can do. The only thing they said was that if the meds dont help then she will need a transplant. She is iffy about that, but well see what happens. The doctors are going to keep her in the hospital until "at least" Sunday. Keep her in your prayers.

Thanks,
Janet

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

Re: update on my mom

Hi Janet
Thank you so much for keeping us updated. Finally she is getting answers. I hope she takes one day at a time. Tell her I will include her in my prayers. Please keep us posted.

[Toogoofy317 Member of 1000 Post Club! Find all posts View Profile Close Toogoofy317]

Re: update on my mom

Shirley I know how it is to be stuck in the hospital for what seems like forever. I also know what it is like to have the docs scratching their heads. Just don't give up even when it seems like the docs have! Keep forging ahead and you will make it over this bump in the road.


Mary S.

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

Re: update on my mom

Thank you for the update - Please tell Shirley we send our love and good wishes. It is sounding like her heart has become "restrictive" a rare but known complication of HCM. Med mgt and transplant are the treatments options now available. It still may be a good idea to get a second opinion prior to setting a plan of treatment.

Send a few hugs and a big smile from all of her friend here in cyberspace!
Thanks - by the way we all think your mom is a wonderful lady!

Best wishes,
Lisa

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

Re: update on my mom

Janet,

Thanks for keeping us updated on your mom. She's pretty special to all of us and she's been in our thoughts and prayers. We all just want to see her get better dangit! Is Shirley up to receiving phone calls at the hospital? If so, please post or PM me the number and best time to call her.

Thanks,

Jim

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

Re: update on my mom

Hi Janet,
Geez, you must have had your cage rattled rather badly too. Please take care of yourself – and watch out for your brother also.

Tell mom that Burt sends his love (You don’t have to tell dad just now – he has enough on his plate.) If she is allowed phone calls please send me her number and best times to call. You can tell her I have some more jokes for her – we’ve swapped quite a few so far, - some not fit for posting.

Mom must have asked you to post her status, and we all appreciate your doing so. Any more information would also be thankfully received. Your mom has made a great many friends here and we are all concerned about her.
Burt

[Brown Team Junior Contributor Find all posts View Profile Close Brown Team]

Re: update on my mom

Thanks for the update Janet!

If she hasn't asked for it already, maybe you can remember her Travis Tritt CD or if she got anything from the concert the other night ... it was so great to hear that she had such a great time! Plus I too am a huge country music fan and have always wanted to go see Travis Tritt ...

In our thoughts and prayers!
Mechelle

[Tigger1 Barely Heart Find all posts View Profile Close Tigger1]

Re: update on my mom

Janet,

Your mom will always be on my mind and in my prayers. Tell her to relax and stay POSITIVE...

Tigger1

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

Re: update on my mom

Janet & Shirley, thanks for the update. I like Lisa think it is Restrictive cardiomyopathy. That is what I had before my transplant. Shirley, I know they will try medicines, etc. Please if you move onto transplant stage let me know, I will be glad to talk to you about my experience. I am so much better. I will keep you in my prayers. Hang in there kiddo, it will get better. God did not promise us an easy time just a soft landing. Those of us with HCM or ex HCM as in my case, are usually strong people, so stay positive.

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

Re: update on my mom

Ok everyone i'm back, i had my test run and as my daughter said i have gotten a stiff heart both left and right ventricles are siff , Dr. Gilligan said both ventricles and septum they have me on verapamil 240mg , iam in a daze right now everything is happening so fast it really threw me off to find all this out, but at least i got some answers now i have a lot to think about, But i did tell Dr. Gilligan that i would not have a transplant here, he says the med might work but didn't look all that excited about it, and i got to talk with a few of the surgeons that attended my surgery and oh the questions they had for me, and they were amazed at what i knew about the disease. I want to Thank all of you for the kind thoughts you have really become a part of my family

P.S Hi Rhoda
We got to meet finally thank you very much for coming to see me

Shirley

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

Re: update on my mom

It is good to hear from you. I am glad you are getting answers and hopefully are on the way to feeling better.

Be well,
Lisa

PS - I am so happy to have YOU as a member of my family!

[Abbygirl2 Barely Heart Find all posts View Profile Close Abbygirl2]

Re: update on my mom

Shirley, ((big hug)) Thank goodness you are getting some answers. This must be a scary and confusing time for you. My prayers and thoughts are with you.

Take care,
Pam

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

Re: update on my mom

Hi Shirley,
It’s good to see you posting on the boards again. You say that Dr. Gilligan wasn’t all that excited about drug therapy helping, and you told Dr. Gilligan that you would not consider a transplant there..

Well, you’re trying the drug therapy first, but in the event it doesn’t help, don’t you think you should consider where you would have a transplant done, and get the ball rolling toward getting your name on a heart transplant list – just in case? These things can take years. If the drugs do work, - great – you can always have your name taken off the list. However, if the drugs don’t work you’d best start the transplant processes now.

Talk to Midge Rollins about it – our recent HCMA graduate. She’s still an active alum, and I’m sure she would give you the benefit of her experiences with transplants. Shirley, your family to us now, and if anything ever happened to you we would all be very upset to say the least. Your background does not bode well for procrastination. Think it through, then go do something about it.
Burt

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

Re: update on my mom

Shirley, I am so sorry you are having these problems. I hope and pray things will go better for you. Keep your hope alive and hang in there. Pam

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

Re: update on my mom

Burt

I plan on getting the ball rolling, and i also plan on getting all the research i can and am also thinking of getting a second opinion about my heart and try to get on a list if it turns out that dr gilligan is right, but he sounds pretty sure of himself so we will see i promise i won't sit on this

Shirley