Hi, I'm a new member

[Dee]

Hi everybody,
I just wanted to introduce myself, I just became a member last night. I have "met" a few of you in the Coumadin forum, thanks for the great info.

I'm 39 years old, female, and had no idea at all that I had anything wrong with my heart until Oct. 22, 2003, I had some minor chest pains that didn't go away after about an hour. My husband insisted that I go to the Dr. and took my there. All of my blood work and EKG came back normal. My heart rate was a little high, but they blamed that on being in some pain. Luckily the Dr. decided I should be admitted into ICU overnight to "keep and eye on me". That decision changed my life! During the night my enzyme levels started to elevate (showing something was going on with my heart). Up to that point they really didn't think anything was wrong with my heart. A healthy 39 year old female with no family history of heart problems, it couldn't be her heart. Think again!! The next morning they did an Echo and sure enough, there was a myxoma tumor attached to my mitral valve. The Dr's jaw dropped to the floor. We live in a very small town, so of course I had to be transported to a larger hospital about 90 miles away. Once there, they ran a bunch of different tests on me, just so they knew what they were getting into during the surgery. Three days later I was in surgery having my mitral valve replaced. I guess these tumors are pretty rare, and then on top of that, having one attached to the mitral valve is very rare. They had never seen that at this particular hospital. The danger of leaving a tumor in the heart is that it can break loose and cause a fatal stroke or heart attack. The surgeon told my family in the waiting room after my surgery that she felt like they got in there just in time. She said it was very fragile and that as soon as she touched it, it broke apart. Whewwww!!!

My recovery has gone very well with the exception of being hospitalized 2 weeks post op for pneumonia and again about 3 weeks ago for a sinus infection that was not responding to oral antibiotics. I started cardiac rehab the first week I was home and will be done in 2 more weeks. I really believe that has gotten me where I am today. I'm still "fighting" with the coumadin, but recieved my Coagucheck yesterday and think that will help to regulate it.

I look forward to the support of this group and giving support to others. It looks like this is a great group of people with one thing in common, valve replacement. I never dreamed there was a website just for valve replacement patients! What a great thing!!

Sincerely,
Dee

 

[ALCapshaw2]

WOW !!! What an amazing story Dee.

Too many Doctor's dismiss women's complaints about heart problems, especially younger women. That Doctor is to be commended for his decision to 'check it out'.

Glad you made it. If you haven't figured out already, Bumps in the Road are not uncommon following Heart Surgery but the vast majority make it through the ride. Hang in there and feel free to ask any questions as they arise. Just be sure to let your Doc's know of ANY changes during your recovery.

Glad you made it !

'AL'

 

[Karlynn]

Welcome "home" Dee,
So glad you found us.
You have quite a war story to tell. I'm so glad everything was done when it needed to be, rather than having your complaint dismissed, or doctors hesitate, etc.

Be good to yourself and kind to your body. Your heart will decide what it's recovery time is, not you. It is it's way of letting you know who's in control!

I look forward to hearing more from you.

 

[Nancy]

Hi Dee-
We had a friend of the family who had a myxoma removed. She's doing just fine now. She was asymptomatic and it was found in a flukey manner. She was very lucky, as you were.

 

[Georgia]

Welcome, Dee

Welcome, Dee

Glad to have you on board.

What an odd thing - something I've never heard of. Aren't you lucky you had a doc who listened to his hunch!

The Colorado contingent is growing and growing. Must be either in the water or the altitude!

 

[Creed3]

Hi Dee!
Wow, when I read your post it took me back to when I initially had problems in 2002. The reasons for our surgery are different, but there are a lot of similarities. I was 34 when my problems started. The docs thought everything was fine. I was a young woman, 34 years old with no previous or family history of heart trouble. They let me go for months. I just kept going from doctor to doctor until someone listened to me. Once they correctly diagnosed my problem they sent me to Cleveland to have surgery right away. It's a very long story. It's amazing how docs think just because you are young that nothing is wrong. They sometimes also think that because you are a woman, that it is hormones or something, just in your mind. It's great that you had docs who took the initiative right away. I had to go to three different docs until they sent me to Cleveland. There was definately divine intervention involved when it came to your quick diagnosis and treatment. I hope the rest of your recovery goes smoothly. Please keep us all updated.

Take Care!
Gail

 

[Raverlaw]

Dee,

Welcome! You will find lots of stories here about women whose complaints were dismissed or trivialized at first. I'm so glad your husband insisted you go to the doctor, and that your doctor was smart enough to admit you for observation.

Congratulations on a successful valve replacement- I hope to join you soon, sporting a shiny new St. Jude aortic valve.

 

[mamsram]

howDee, I mean, hiDee,

Wow, YOU are one lucky lady. Talk about close calls. So glad things are under control.

Welcome, and know you are among friends and people that are in the same boat.
You'll get lots of info here.

 

[Bryan B]

Welcome Dee. It's nice to have another member who can share their experiences with everyone. I seem to learn something new here every day.

 

[tommy]

I'm in Texas.....I'll say "HowDee".

My, what a story! Give your hubby an extra hug or two or three (gently, now), for quick action.

Here's to a full and quick recovery!

 

[bvdr]

I'm from North Carolina so I'll say "hey, Dee"

Welcome to our on-line family. I'm glad to hear everything is going well for you. It was nice reading your story. I too know people who have had tumors in the heart and it still amazes me.

 

[Glenda]

Hi Dee, my goodness it sounds as though you have really been through it. I pray it just gets better and better from here out. I am also new to the site and I don't post very much but I do read everyone's postings and I have learned so much from them. I am waiting to have an aorta valve replaced probably sometime this summer.

Keep us posted on how are you are doing.

Love and God Bless, Glenda

 

[Abbanabba]

Hi Dee - wow, sounds like you had a really close call!!! Kudos to both your husband AND your doctor (..sure wish there were more like him!!..).

Anyway, welcome to the site. Glad you made it here.

Cheers
Anna : )

 

[Harpoon]

Hey! No fair! That's my birthday... =)


Welcome, it's a pretty cool place here.


Glad they were able to stay on top of things and get it taken care of so quickly. Sometimes there are doctors who just don't recognize that there's something going on they might not be able to comprehend, or even treat and the problems just keep building up. I think some doctors just don't like to admit that they might NOT know something, or worse yet, might not know something they SHOULD know.


The coumadin thing can be fussy, but it seems to be more in your diet, being consistant with what you eat more than anything else.

INR and P/T levels are pretty finicky and can fluctuate to just about anything. You said you had some pneumonia and a sinus infection, the meds to treat and the infections themselves probably didn't help matters stablizing your coumadin dosage. Once you get your body on track that should come around. Just takes a little patience and many a needle stick... =)

I've only had one "incident" when my INR was out of range and it was recently, just after going off one of my medications, about 8 months after surgery. It's pretty sensitive to changes in body chemistry so when you get sick or make a drastic change in diet or change medications you may need to make adjustments in the coumadin you take.

When mine was out of whack, I skipped one day's dose, then took a half dose for the next two days, then two full doeses for the days after that, then had my PT/INR checked again and everything came back normal.

 

[terry40]

Welcome Dee

Welcome Dee

It sounds like you had a pair of angels on your shoulders.

The coumadin will be a bit of a problem till you regulate it, mine took 6 months after surgery, but with persistence I won out.

Rehab made me feel a bit more confident too.
Keep up the good work,

Terry40

 

[Dee]

Thank you all for the warm welcome!!! I already feel part of the "family"! I am finding so much information through this site, it's great! The support is the best, it is really nice to know that there are so many other people out there with valve replacements living wonderful lives. In our small little town of about 9,000 people, in the mountains of Colorado, I feel like I am the only person in their 30's that has ever had anything like this, but now I see that there are many of us from around the world. I am the talk of the town here, isn't that funny?

I look forward to talking to you all more in the future. And yes, I know I had angels on my shoulders! But I think we all have, don't you?

The best to you all!!!

 

[catwoman]

Dee:

Where on the western slope are you?

Number of years ago my husband and I drove from Fort Worth TX to Salt Lake City, camped out all but one night (Salt Lake City) with our dog. On way back, we spent one night at the National Monument camping area. Still remember overlooking Grand Junction and using binoculars to look at the flashing lights (police cars & other emergency vehicles). Gorgeous part of the U.S.

Glad we have you among us today!

 

[Dee]

We live in Glenwood Springs, it's right on 1-70 so you would have gone past on your way to Grand Jct. We are about 40 miles from Aspen and 60 miles from Vail. We love it, it's so beautiful!! I had my surgery in Grand Jct. it's about 90 miles away. I was born and raised in Colorado, only leaving for a short time to live in Hawaii and lived in Reno, NV for approx. 5 years.

We are a very outdoors family. We have 2 children, our daughter is 17 and our son 14. We are avid snowmobilers in the winter (I sure miss it this winter, but look forward to next winter), we ski and snowboard (the ski area is about 10 min. from our house). In the summer we love Jeeping, camping, hiking, fishing and my husband and kids ride dirtbikes (I go along and read a good book and hang out in the motorhome).

Thanks again for making me feel welcome!!

 

[Rush20]

Welcome Dee. Don't feel too bad about being only 39 and having valve replacement. I was 39 when I was diagnosed for my leaking aortic valve - apparently the result of a dental procedure the prior year.

I was in shock during the three weeks from diagnosis to surgery. I felt like I was too young, or too healthy for this to happen. Luckily, I had a thorough Primary Care Physician and skilled surgeons.

As I approach my 6-month anniversary of my surgery, I feel more and more blessed. This is a great site and I wish I would have found it during my 8 weeks of at-home rehab.

 

[SHerrin Hutt]

Hi

Hi

Hi Dee from Southern Indiana
After reading your story I felt the same for several years I went from Dr. - to Dr. and tests after tests and they could not find the
answer. I felt like the little boy who cried wolf. Up untill Jan of 2002 when I went to the Er with chest pain and very little B/p they finally started listening . I had a stroke and was in CHF and could only see very little . It was a very scary three weeks. Well at least I only rember 1 week the rest was a blur!!!!!
Weclome to a great support family



Sherrin Hutt
Valve repair 5/99 Cleveland Clinic
Valve replacement 3/02 Louisville , Ky