My neck catherization/stress test

[alicia]

Well today I went to Duke and had a right heart catherization via my neck and level 3 bicycle test. Duke and only 3 other hospitals perform this test. The cardiologist doing test told me prior to test that he would have some prelimnary results, but the rest would be back after bloodwork comes back next week. They inserted a swanz neck catheter and it was painful! He said my veins were so small. This took about 30 minutes. I then (wit all tubes in place and all monitors,etc hooked up) had to get on exercise bike and peddle away. I did very well, I went up to level 4 and rode for about 20 minutes but boy was I tired and breathing hard. I had a clip on my nose and a tube in my throat. They took BP every 2 minutes and it went up as high as 200/100..They did a pulmonary breathing test which results were excellent. After all tests were complete he said theres something definately wrong because my pressures in the heart were very high and its not just detereation of the heart muscle as they suspected. Well now he wants to wait until bloodwork comes back and he confers with another cardiologist as to what the exact problem is. Im afraid I will have to have the valve replaced since he did say the problem may be within the valve but he wont commit to anything now. What do you guys think? Please help, Im desperate and stressed to the max! Feedback, please....

 

[Nancy]

Hi Alicia-

I'm so glad for you that that's over with. What an ordeal. But you didn't pass out or anything so that's a good sign.

Joe and I have found that it's never a good policy to worry about things until it's absolutely necessary, maybe about 2 minutes before surgery if it gets to that. The rest of the worrying is just so much wasted time. It's useless and you can do holiday shopping or decorating during that time or plan a nice small outing for yourself and someone you love.

Let the pros do your worrying for you. They get paid BIG, BIG bucks to do that. Let them earn it! (forgive me all you lurking doctors)

Get your hair done, buy something nice for yourself, watch QVC and order the jewelry du jour.

Your test results will be here soon enough.

I wish you all the best.

 

[Ross]

We know what you know and that's all we know. Not much help huh? Like Nancy said, don't work yourself up. Stay calm and collected. I know it's easier said then done, but practice makes close to perfect.

Not to talk about myself, but they drug me through almost a full year of tests before scheduling surgery. I was going nuts for a long time, then one day, I just threw my hands up in the air and said, "God, it's in your hands. Whatever the outcome is, must be what was intended. I can no longer worry myself to death. It's tearing me apart."

You will be fine, so kick back, turn it over to the higher power, and enjoy your life.

 

[alicia]

Good advise Nancy & Ross. I feel better since Ive had a "talk" with God. I have put it in his hands and will accept anything they can throw at me. Thanks for encouraging words. They do help.

 

[Vicki448]

Alicia,
I am praying for you as you await the results of the bloodwork. I'm not a patient person myself, so I know that waiting is very difficult. Continue to pray - God does listen to each and every one of us. I trust that things will be very positive for you - the glass is half full, don't forget!

 

[alicia]

Im still anxiously awaiting news from Duke. I believe they are thinking I have PPH which is a deadly diagnosis. This is diagnosed by doing a right heart cath (which I had last week) and pressures in lungs are elevated. the cardiologist doing test said there is something wrong because pressures are high. What do you guys think? I really appreciate your opinions. Im not looking for the worst but trying to prepare myself. Advise please.

 

[Nancy]

Hi Alicia-

There's Primary Pulmonary hypertension and there's also Secondary Pulmonary Hypertension. The secondary one is something my husband has, it's secondary to his heart condition. He's had it for years. His doctors are aware of it and keep close track of it. There are meds that can help both. The secondary one is not as bad.

Do your best to wait for your doctor's actual diagnosis. Don't get too far ahead of yourself. Remember, worrying is absolutely useless. Let the pros worry about it. There's all kinds of new gimics and gizmos coming out every day.

Take care,

 

[pegne]

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In 1998 I was diagnosed with pph at a hospital in Chicago. After being sent to Mass. General and back to the Cleveland Clinic (where I had my 3rd heart surgery in l995, a failed Ross Procedure) I had to make the decision to go to Toronto. I chose not to. I went back to the Univeristy of Chicago Hospitals where I met Dr. Jeevanandum, the surgeon who eventually replaced my Aortic valve and my Pulminary valve. So far the pressure in my lungs is staying down. I have delt with heart problems and surgeries sinceI was 6 years old but I must say the the idea of having PPH was the scariest feeling of all. My prayers are with you.

 

[hensylee]

Alicia - being a member of VR is such a help, isn't it? Pegne has come along with some true personal information for you and it sounds encouraging. It is just horrible to have to worry and wonder about what is going to happen next and we always expect the worst. I cannot blame you, I do it, too. As much as I tell my daughter that she when she can't change a thing and she shouldn't worry, guess what? You guessed it. At least in here, you will find at least one person who has exactly what you have, or at least something similar. And tho nobody can guess what your outcome will be, you certainly have the support of all who enter these portals and I do think Pegne was so helpful having been there herself/himself. You have the prayers and thoughts of many. God bless

 

[alicia]

Thanks for all the encouraging words. This site is the BEST! Eveyone here is so warm and welcoming and helpful.

To update: Duke called me on Thursday and said that my cardiologist wants me to see him on Wednesday (day before Thanksgiving) to sit down and discuss my "options". His nurse would not commit to anything. So now its an agonizing wait until I see my doctor face to face.

I pray its not PPH. Something is definately wrong here.

Id appreciate anyones thoughts on this.

Thanks to all.

 

[Nancy]

Hi Alicia-

I'm thinking positive thoughts for you and will say a few prayers. At least you won't be on the hook for Thanksgiving. You'll know where you stand.

 

[alicia]

Thanks Nancy. That is a positive thought about knowing before Thanksgiving.

Hows Joe doing these days?

 

[Nancy]

Well, Joe's heart is just fine. He's got some other medications which are giving him fits, but it'll get ironed out in a couple of weeks.

He'll be seeing his cardiologist next month and probably his PCP too.

They keep him well monitored in the office, and I keep him well monitored at home. He gets the full workup every day, temp, weight and bloodpressure and I keep track of it in a journal. With him, it's not overkill.

Just call me Nurse Ratchet.