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Mixed Feelings

Lynnedz56
0 Recommendations

My cardiologist has recommended me for a study he is part of. It is not being done by a drug company as my doctor told me he does take part in those. It is being done in conjunction with the Heart Association. They are trying a new drug that will hopefully help patient with diastolic dsyfunction like I have. I go tomorrow for the evaluation and possible inclusion in the study. I've got mixed feelings. Anything that would help my condition is a good thing. But again, I wonder what are the risks to a new drug. I've never been part of anything like this before. And I'm nervous.

Explore topics in this discussion:

Heart disease Dialysis Cancer Breast cancer

6 replies

martzj

Hi Lynnedz,

I'm confused by what your doctor is telling you. All drugs will have to be approved by FDA anyway, so it is a drug trial. Maybe he meant to infer he is not being paid by a drug company to provide patients for this trial. The Heart Association take funds from major pharmaceuticals. There is no major medical association in the US that isn't sponsored in part by the drug companies.

At any rate, it is your decision. If you feel it may offer real improvement in diastolic dsyfunction it may be worth the risk. Almost all our heart meds carry so many side effects that are detrimental.....Maybe this will lighten your heart's pumping burden. That is something to hope for!!

take care,
Jaynie

Kennarina

Hello Lynne

It' s a big decision, but I hope you will go for it!

Women have been appallingly under-represented in cardiac research for the past three decades, but this is partly because women themselves are not coming forward to volunteer for clinical trials. We volunteer for hormone or breast cancer research - but not cardiac studies.

The good thing about these kinds of trials: participants are very closely monitored for the duration of the study, so if anything, you'll likely be safer with this trial drug than for any of your current meds that you are not being monitored for.

Good luck! Keep us posted....
XOXOXO


http://www.myheartsisters.org

Lynnedz56

It is sponsored by the national heart and lung association. And it is a current drug being used for heart disease. But they want to know if they use a lower dosage will it help with CHF. They asked lots of questions and took blood and I will know in a couple weeks if I am eligible for the study. And I will do it. And yes, as part of the study I will be monitored more closely and have a nurse available 24/7 for any heart questions.

MMaslek

I've done a few when I was going to the Cleveland Clinic for treatment. I've never grown a 3rd arm or had any adverse reactions. They do monitor you closely & it may help. Most of these drugs have been very well tested before they ever get to human trials. Good Luck!!!

goingstrong

It doesn't sound like a 'clinical trial' which is, although more risky, absolutely necessary for ALL of us if we as women, are going to get drugs for our daughters and grandchildren!

It sounds more like a "different" application of an established medicine, which would be a worthy trial! Go for it!

kathybg

please get any and all info including suspected side effect before you agree to the study. my brother in-law did a study like that after his lung transplant and it almost destroyed his kidneys and wound up on dialysis temporarily. his doctor still insisted he continue the study but thank God my brother in-law refused, dropped out and his kidneys improved and healed completely after a couple of weeks without the study's drug. Be careful-Kathy

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