New - Waiting for surgery date

[kimmychesh_1]

I am 46 year old mother of five. Diagnosed a year ago with Moderately Severe Multivalvular Insufficiency (3+ Tricuspid, Mitral and Atrial). I also have moderate pulmonary insufficiency. Last December my doc said to come back in a year so he must think I don't need surgery yet. I'm the type that likes to plan things and want details. Wondering when I will need surgery. Reading through the posts and glad I found this site.

Heart problems are due to Chemo and radiation - two time cancer (HD) survivor. Worried about healing after the surgery also. Well, enough for this intro. Look forward to sharing info with you all.

 

[Harrybaby666]

Hi Kimmychesh

Hi Kimmychesh

Hi There Kimmychesh,

I just want to welcome you to this wonderful website. I too have multivalvular regurgitation, and like you, I am waiting for surgery. So far, everything is ok, but like you I keep wondering if it will ever get fixed. I have found that having the chest pains that I do, that this is the time to start bugging the doctors...be persistant, and MAKE SURE THEY LISTEN TO YOU..I have had an incredible time finding a Cardiologist who will be straightforward and not beat around the bush when it comes to my health..I had to find out that I have Cardiomyopathy from the doctors who operated on me for my KIDNEY..LOL Isn't that pathetic. Well, anyway, again, welcome and I hope that everything goes well and you stay well. Harrybaby666

 

[tobagotwo]

Waiting is the worst part.

This is a wonderful place to learn from the experiences of others who have had similar issues. It is a good proving ground for ideas, and a whetstone for arguments about valve, surgeon, facility, and procedure choices, such as may be available to you.

On occasion, it can be a good place to let out a primal scream, too. Reason and logic, after all, do not rule the entirety of the human creature.

I hope you find answers, or at least good company here.

Very best wishes,

 

[Karlynn]

Welcome!

We have some other members here who have had chemo and radiation related valve issues.

You've found your best support system outside of your family, when you found this site. It is an endless resouce of information and of people willing to share who have "been there, done that."

My first piece of advice: keep an eye on your symptoms. Sometimes they can sneak up on you slowly, or very quickly. Be aware of any changes. Shortness of breath, chest pain, fatigue. Depending on how long it's been since your chemo and radiation, you may have a tough time figuring out what is causing which symptom.

Trust your instincts. Don't let a doctor tell you you're fine, when you don't feel you are. Be your own best advocate and don't take no for an answer.

You've just increased the size of the people willing to walk with you through this, to about 800 or so. Don't worry, we don't show up for dinner unannounced.

 

[Christina L]

Welcome to this site. I agree with Karlynn but I would go one step further and say that the people on this web site will be your "best" support system, even before your family. They were for me. My family supported me, yes, but they did not "understand" what I was going through - unlike the people you will find here.

Listen to your body and see your cardiologist at regular intervals. When the time comes for surgery, it will be the right time.

Again, welcome to the board. I hope we all can help in some way.

Christina L.

 

[fyrfytr]

I just wanted to say Welcome to this Wonderful Site.
Take Care

 

[hensylee]

Kimmy I think you have found your study site. There's probably nothing that hasn't been covered in here and a great deal of stuff that a doctor can't tell you, besides. Browse through previous postings and threads and you will busy right up till your surgery date - if you have to have the replacement.

 

[Heather Fisher]

Kimmy,
Welcome to the site. You will learn a ton of information here. Be glad you found it before your surgery. You will certainly be ready and know what to expect when the time comes. Waiting for the surgery is truly the worst part of the entire process.

Heather

 

[ALCapshaw2]

Welcome to our world Kimmy !

There are several Radiation Therapy survivors on this board, 3 or 4 of us for Hodgkins Disease, and 1 or 2 for lung disease. ALL of us believe that radiation was a significant contributor to our heart and / or valve problems, if not the principal cause.

From personal experience, I urge you to have REGULAR checkups (at least annually, semi-annually if symptoms appear or worsen). Cardiologists tend to postpone surgery as long as possible. This can lead to PERMANENT Heart Muscle Damage so I would also urge you be sure your cardiologist monitors your Heart for Enlargement and / or increases in heart wall thickness.

In my case, I believe I got to surgery 'just in time' and suspect that earlier intervention would have been wise.

'AL' (Hodgkins, CABG, and AVR survivor)

p.s. you may be interested in Johnny Stephens story and posts. Do a SEARCH (keyword Hodgkins and / or Radiation) to find others.

 

[Dee]

Welcome from me too, Kimmy!!

Glad you found us! The only regret I have about this website is that I didn't find it before I had OHS! This is a great place with tons of info and support! Remember, knowledge is power!

~DeeDee~

 

[kimmychesh_1]

Thanks for the Response

Thanks for the Response

Don't worry, we don't show up for dinner unannounced.

Hi Karlynn -

Thanks for the welcome. And I am used to my children and their spouses or friends showing up unannounced for dinner. So you would be more than welcome. I'm looking forward to the support of friends on the list to help me through this.

Take Care!
Kim

 

[kimmychesh_1]

Fellow HD Survivor

Fellow HD Survivor

From personal experience, I urge you to have REGULAR checkups.

Thanks Al -

I appreciate the info. I recently had an MRI and they told me there was an "old stroke" evident. My Cardiologist called and scheduled me for next week. Don't know what he plans to do. My valve disease was diagnosed last year and I've been seeing him semi annualy. In December he told me to come back in a year. I've had to educate him about the late affects of radiation and Chemo. He was pretty clueless. I will search for others who have had HD on this site for info. Good idea.

Take Care!
Kim