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08/10/2010 11:14 PM

New and don't know what to ask doctor

MariJeanne
Posts: 4
New Member

I was diagnosed with pulmonary hypertension the end of June. The doctor just blurted this out and briefly asked me how long I've had 'hypertension'. I told him I don't and that's when he proceeded to tell me I have pulmonary hypertension and that I have some thickening around the heart, etc. I had seen that the cardiologist had put this for blood work, but just had thought that it was only a possibility. I'm really scared, from what I've read so far and it seems that no one has heard of this (or basically wants to be supportive at all).

I have some surgery coming up (female issues...4 separate kinds of surgeries at that time) on Sept. 2nd and have an appointment with the sleep/pulmonary doctor on Sept. 30th.

Can someone give me advice how to communicate with my doctor and any pertinent questions I can ask to understand this disease better?

I've read the board for a couple of days and it seems everyone is honest with answers and also open with their feelings about their fears.

(I hope I posted this okay and in the right place.)

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08/11/2010 07:53 AM
cicero28374
cicero28374  
Posts: 451
Member
I'm an Advocate

I'm not sure what happened to the top of this. Hope you got it.

A few years ago the life expectancy was diagnosis plus 2 years. Now it is longer and in fact is long enough that all but the dumb keep their "guess" to themselves.

There are several new medicines and they help and newer ones are coming along all the time. So Its bad, but not so bad that I worry about the end, I just fret about the limitations that it causes. Can't do anything about them but I fret anyway.

The doctor, is he/she a PH specialist? If not get one right away. They don't know much about this and the others know nothing.

I'm not sure how they made the diagnosis. If they used the echo cardiogram method, it is an estimate and is the less positive and definitive of the two. If they did a Right Heart Catheter, that is definitive. Any reading over about 20 - 25 is PAH. But a reading of 50 does not have twice as bad effects as a reading of 25. On the other hand the symptoms might be the same.

There are about 300 new cases in the US per year. This means after 10 years or so you start to have a good number and more to learn from.

I don't know what to tell you about your attitude, but being scared won't help any and you do need to find everything you can about it but there is very little non scientific stuff to learn.

There is a possibility that this is tied to your sleep problems so you want them attended to as as possible.

I guess thats enough for the first message so write me back whenever you want and I'll answer. I also am concerned and care about you so don't give up. Do good. Be strong and hang tough. Be a WONDER WOMAN.

God have mercy-on us all

CiceroCool


08/11/2010 07:57 AM
cicero28374
cicero28374  
Posts: 451
Member
I'm an Advocate

Oh consider that you are now back in school. This is some that got lopped off. Get a good ledger, Start to make notes and have a section for questions and go thru that section every time you go in and write the answers down or the new questions. If at all possible get a buddy as smart as you or smarted and have them go also and compare notes within 5 minutes after exiting the Dr's office. Be proactive learn, ask, react, plan, grow, Be calm.

Love to you, not romantic, the kind that suffers any strain and remains strong and alive

God have mercy on us all

Cicero Tongue


08/11/2010 08:30 PM
MariJeanne
Posts: 4
New Member

Cicero...Thank you for writing back. I'm actually really in the dark about anything regarding numbers, etc. My doctor just gave me the diagnosis and briefing (in a hurried way) about the right side of the heart and the lungs. I have been reading up on this disease since the diagnosis and have made a list of questions.

I was diagnosed through the echo cardiogram and bloodwork. I'm on beta blockers for one thing.

I'm sorry for all the challenges that you have gone through and seems as though you do a wonderful job with this forum.

I have had numerous health issues dating back to when I was 13 years old so not new to the medical system itself. I have a cardiologist and a sleep doctor/pulmonary doctor. Both of the doctors seem to work hand in hand with each other on cases.

This disease sounds as though it's difficult to diagnose and takes a while to find out. I was having chest pains so was sent to a cardiologist. It was found I have severe sleep apnea and a urogynecologist (the woman doctor that is operating 9/2) informed me about all the health issues that were actually going on (kidney cyst, slight enlarged heart, nodules in lungs). It was only the last appointment with the pulmonary doctor that I was told about the pulmonary hypertension. It was such a shock that I couldn't think of any questions and he was quick to leave the examining room.


08/12/2010 06:05 AM
cicero28374
cicero28374  
Posts: 451
Member
I'm an Advocate

Remember to get your journal and start your list and education.

If I can help please let me know.

God have mercy on us all

Cicero


08/12/2010 07:15 AM
MariJeanne
Posts: 4
New Member

Thanks, cicero. I'll make sure I do as you suggested.

08/27/2010 04:26 PM
mizzchola16
Posts: 4
New Member

I feel stupid saying good luck but I want to wish you all the best MariJeanne, I'm at the beginning of learning all I can too and feel very much in the dark also. Trying to learn all I can and reach out to others in my situation. Cicero28374 has given some great advice and I'll be taking it on board also with my journey and research. Just wanted to wish you all the best MariJeanne. Hugs to you (((HUGS)))

08/27/2010 05:19 PM
MariJeanne
Posts: 4
New Member

Thanks for the hug and reply mizzchola. It really helps. It's reassuring to know that I'm not the only one that feels this way.

Good luck.

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