Trip to DisneyWorld, Probably My Last

[KimC]

I went to DisneyWorld with my entire family last week and had a wonderful, unforgettable experience but was constantly reminded that something's wrong with me physically. I had frequent attacks of chest and left arm discomfort/pain on a scale from 2-8 while trekking around the parks, pushing a stroller and fighting the crowds in 85 degree heat! I had to take my nitro several times which was unprecedented. The nitro helps but makes me feel so tired.

As soon as I returned home from Orlando, I called my local cardio who would like me to go to cath sooner than the end of next month. She also recommended another doctor named Carl J. Pepine from Gainesville, Florida who's leading the national effort for research on the female heart. He's one of the researchers involved in the Women's Health Initiative on Heart Disease, (the study that has been in the news a lot this year re: hormone replacement therapy).

Dr. Pepine has challenged established medical notions about female vs. male heart disease, including microvascular disease as a cause of ischemic heart disease in women. He also recently researched and wrote about the ergonovine cath, the test I'm schedule for next month at the Cleveland Clinic.

Dr. Heupler from the Cleveland Clinic is SOLID AS A ROCK, but now I'm wondering if Dr. Pepine would be more in touch with heart disease/variant angina as presented in women who are going through hormonal changes. (I'm 10 months postpartum).

Bottom line, I'm more convinced than ever that I need to figure things out: God spoke very loudly to me last week.

Can you tell I'm starting to get nervous? ;-)

Best,

 

[Harpoon]

Oy!

Glad you survived your trip to Disney...


I don't know that much about the differences between men's and women's heart disease but I do know that there are some differences, especially in how some things present themselves.

I think there are a lot of different hormonal differences involved, that seems to be the most likely thing. Plus, men don't get pregnant and I know that can put a lot of stress on a woman, one big difference in our "lifestyles" really.

Menopause in women is also a big change that men just don't have and I'm sure that also has a role to play in heart health.



Takes a while for the "experts" to think about these things and take a closer look doesn't it?

At this point, you might continue on your current track with CCF, however it might be worth asking about Dr. Pepine and his research, it might be worth considering, at least taking a closer look to see if there are coorelations between his work and what you're experiencing.

 

[tobagotwo]

He seems to have hit on a poorly acknowledged area. I guess one question would be what is his practical focus? Does he have great experience in corrrective actions and surgeries, or is he more of a researcher?

I would be very reluctant to lose a good contact at CCF. Is there a way to "blend" him into your possible treatment plans?

...And the trip to Disney World will likely only be your last if you're tired of going there. More than once every few years is too often, anyway.

Best wishes,

 

[Mark Wagner]

Hi Kim,
You have every right to be a little nervous, and that's okay. Kim, try to put it in God's hands. If you can somewhat do that, it will help you concentrate and focus on finding what wrong, instead of being overwhelmed with worry. The change of life does not help at this time, so that perspective will come and go on a daily basis. (Take it from a husband .... ! The last comment, Kim, we are all here for you. You have to keep positive, or it very well could be your last trip to Disney Land. I know that is easier said then done and tougher than words, but now more then ever you have to fight this thing. Your family needs you, and has a complete life time in store with you .... and yes, many more trips to Disney Land. You and I will still be sending a note on the VR site now and then, when where into our 70's! God be with you ... Mark

 

[KimC]

Harpoon, Bob, Mark ... all good points, thank you.

I am balling my eyes out. Sometimes I look up at the sky and wonder what God's will is for my life and most of all, my children. I don't know if I'm feeling sorry for myself, overreacting or honestly feeling what comes natural when you're facing a life-threatening disease. I adore my husband and family, but no one seems to understand what I'm feeling, and I am deeply grateful for your support here at VR.com.

As a woman, I've gone through a spectrum of emotions about having angina from embarrassment and shame, fear and anxiety, anger and finally acceptance. Thankfully, I found the right team of doctors to take me seriously, although it was the most painful emotional journey of my life for many complex, personal reasons.

I'm also fighting the tendency to look at the worse case scenario, e.g., having a heart attack, irreversible heart damage or worse.

I will return to DisneyWorld, and I will run again on the beach ... but not this year. I can live with that!

With gratitude and love,

 

[Karlynn]

Kim,
I have a reallly good idea of how you are feeling. I felt my absolute worst when my children were tiny. No doctor was coming up with any answers for me and my emotions ran to both ends of the spectrum. I was basically couch bound for the last 6 months before my surgery. But I felt so depressed because I didn't know my surgery was coming. It was literally scheduled in a weeks time.

I cried like a baby at both my children's high school graduations, almost uncontrollably as a matter of fact. It really confused my husband. But I sat there thinking how there was a time I didn't think I'd be around to see them graduate and I was so grateful to have passed through that valley and come out on the other side. You will too Kim. This is a very hard time and it's only natural to have your emotions

You are right, you will go to Disney again, and run on the beach (I'm doing that tomorrow!!!!) and all sorts of wonderful things. Most importantly, you'll have the energy to make your teenage children's lives miserable!! And that, in and of itself, is almost worth the hardship you have now. (Just trying to add a little humor here!)

It sounds like you have a really good handle on how to proceed, it's just the waiting and wondering that can be unbearable. Hang in there, answers will come and you will be held in our prayers every step of the way.

 

[Harpoon]

Yeah... I gotta say I was in terrible terrible shape before surgery. I was literally on death's door but I didn't know it at the time.

The thing that got me the most was how strong I knew my body was. I'm not muscle bound by any means, but I've always been very agile and quick and bounded my way around most of the time. In the weeks before surgery, I had a tough time moving from one room to the next. I'd sit for 20 minutes or more just staring into space at the kitchen table or on the toilet or in my bedroom. it's hard to describe just how bad I was, how bad I felt.

And I coughed CONSTANTLY. I could barely speak, had shallow, labored breaths, moved so slowly around a room. My neck was throbbing with the tricuspid regurgitation which is a REALLY strange thing to feel and to see. My face looked like a frying pan...


Granted, I had a rough time in surgery and for the two months afterwards, but once I got home I really was a new man. By mid-summer I was as strong as I had ever been in at least two years and during my honeymoon in September I was pushing my wife in her wheelchair up and down STEEP hills in Niagara Falls Ontario. I pushed her all over the place (except over the Falls!)

It was such a radical change from how I had felt only 6 months before.

I know how bad you feel now, I suspect even worse because unlike me, your doctors don't seem to have clear answers for themselves yet, but I've been there for the most part and I can say, as bad as you feel now, you'll feel a thousand times better once things are straightened out.


There is a light at the end of the tunnel, don't ever forget that. =)

 

[Nancy]

Hi Kim-

Having gone to Disney World several times, I know that it can really tax the strength of a healthy person. It's very hot, the pavement holds the heat in, the crowds are horrific, the lines are so darned long when you have little kids who are waiting with you with nothing to do and I remember my daughters and I having to hold the toddlers while in line because you couldn't have strollers in line. Those toddlers got very, very heavy especially if they decided to go to sleep while you were holding them. Wheeling around strollers and the enormous amount of walking that has to be done, the older children complained a lot towards the end of the day because it was too much walking for them. Plus the high cost of everything. It's a major workout!!

You were so excited to be able to get an appointment with Dr. Heupler at Cleveland Clinic, I hope you decide to follow through with his appointment and see what he finds. He sounds like a terrific doctor. Also see the other doctor, if you want to, but stay the course that you initially set, taking one step at a time.

Just my two cents worth.

You've done Disney, so how about Busch Gardens next time?

Keep hanging in there. When I think of all of the problems Joe has had in his life, several very "near death" experiences, multiple ambulance trips, many, many ICU stays, 5 thoracic surgeries, just about anything and everything you can imagine in the field of heart and lung stuff. It wears me out just thinking about it. But you know what? The human body can really recover from even the most dire things. You have to get the best care you can for yourself, you have to be fearless in the diagnostic and treatment phase. You can and will find out what is ailing you and you will conquer your illness. Just don't give up. NEVER give up!

 

[Gail in Ca]

Those of us ladies that have had AVR or other heart surgeries when we had young children can empathize with your situation.
My daughter was 2 when my aneurysm was discovered and I had surgery.
Of course, I went on a roller coaster of emotions. Finally, before surgery, I just knew I would survive and be okay to see my girl grow up, otherwise she would not remember me and I could not even think of that scenario, or if it came into my head , I pushed it out immediately!
Try to think positively for yourself and for your family.
They do amazing things for us that have defects, giving us long, happy lives.
Gail

 

[KimC]

You Won't Believe This!

You Won't Believe This!

Karlynn, Harpoon, Nancy & Gail: your words aren't falling on deaf ears! Thank you for helping me get through a difficult week.

I read something yesterday that has made me feel some retribution for the difficulties I had with my first cardio. (As you may recall from previous posts, this doctor misdiagnosed w/ MVP and didn't return phone calls). He's a local celebrity in our small community, well-liked for his bedside manner and one of the longest-standing cardiologists who has been very successful financially.

Here's the catch: he has a serious drinking problem. Last March, he showed up drunk in the ER after being paged to treat an incoming MI and was immediately suspended for refusing to take a blood-alcohol test. Our local paper published a front page story all about it. It turns out that he has six DUI's and one citation for leaving the scene of an accident while drunk!

I am in shock! This is the man who managed my care during my pregnancy!

 

[Nancy]

That's horrific! How can a problem go on for so long like that w/o some of his colleagues reporting him. He's making life and death decisions while heavily impaired.

I just don't understand it. Actually, I feel that people who knew and said nothing while he was treating patients in that condition are almost as culpable.

Where is the morality in not reporting such things. It's just not right.

 

[Mary]

I believe it!

I believe it!

Kim,
I believe what you said about your first cardiologist, because I believe that every human being has difficulties that they face in either a positive or negative manner.
I also believe that what goes around, comes back around, in some shape or fashion. I hope ferverently that I escape a portion of "the retribution cycle" even though I most certainly deserve it!
It seems to me that people who are truly at peace with themselves are people who have learned to ignore what others are doing, and forgive those who have wronged them.
Now that you know the full scope of the mistakes and misjudgements this doctor has made, perhaps you will be able to forgive him. You would surely be the winner in that scenario.
Mary