Idiopathic Pulmonary Artial Hypertension
01-14-2011, 09:08 AM
#11
Super Member
Join Date: May 2009
Location: La Pine Oregon, USA
Posts: 5,907
Izaquilter --- I don't know anything about what you have. But I can tell you this -- what you read on the computer may NOT apply to you! There are miracles and people that live beyond the expected. Talk to your doctor and if nothing else, talk to him about depression.
I agree with Sharon...I worked with a lot of doctors over the years, and interacted with them with 2 husbands that had health problems. They ARE human, not Gods and any doctor that will make you uncomfortable asking questions needs to be fired!! YOU hired them.....if you need more time for an appointment, tell the appointment desk person. I am outspoken enough that I made a cancer doctor go back and wash his hands before he touched my husband. DH had had chemo and his immune system was compromised. The look on the nurses face still cracks me up --- he thought he was God...LOL LOL
I agree with Sharon...I worked with a lot of doctors over the years, and interacted with them with 2 husbands that had health problems. They ARE human, not Gods and any doctor that will make you uncomfortable asking questions needs to be fired!! YOU hired them.....if you need more time for an appointment, tell the appointment desk person. I am outspoken enough that I made a cancer doctor go back and wash his hands before he touched my husband. DH had had chemo and his immune system was compromised. The look on the nurses face still cracks me up --- he thought he was God...LOL LOL
01-14-2011, 09:09 AM
#12
Super Member
Join Date: May 2009
Location: Merced, CA
Posts: 4,188
Do as my DH did. He would over a period of days write down everything he wanted to know about each and every drug, every symptom he felt should be discussed with the doctor, and took this paper, carefully printed out, to the doctor and gave him a copy. And insisted on an answer to each question. He was lucky in being able to go to Stanford, which is a marvelous teaching hospital.
I don't know about your state, but DH also insisted on getting, and got. copies of letters from and to all his doctors. I now have a banker's box stuffed full of them to dispose of, since DH's been gone 4 years. Time to dump them.
Oh, yes, one more thing. He also had me check online on each and every one of his doctor's training and everything I could find out about him/her. Also have a box of these to dump too, but am finding them interesting reading--again --since I typed them up to start with. One of them after reading some of the stuff online made him cancel that doc and go to another one locally.
I don't know about your state, but DH also insisted on getting, and got. copies of letters from and to all his doctors. I now have a banker's box stuffed full of them to dispose of, since DH's been gone 4 years. Time to dump them.
Oh, yes, one more thing. He also had me check online on each and every one of his doctor's training and everything I could find out about him/her. Also have a box of these to dump too, but am finding them interesting reading--again --since I typed them up to start with. One of them after reading some of the stuff online made him cancel that doc and go to another one locally.
01-14-2011, 09:13 AM
#13
Super Member
Join Date: May 2009
Location: Merced, CA
Posts: 4,188
The look on the nurses face still cracks me up --- he thought he was God...
----------------------------
I was a hospital volunteer for over 28 years, and I agree with you.
We all called the new interns GITS...
Gods In Training....
And lots of them acted like they already were. The one or two who were cheerful, professional acting even though not too chummy, still stands out in my mind, long may they practice.
----------------------------
I was a hospital volunteer for over 28 years, and I agree with you.
We all called the new interns GITS...
Gods In Training....
And lots of them acted like they already were. The one or two who were cheerful, professional acting even though not too chummy, still stands out in my mind, long may they practice.
01-14-2011, 10:11 AM
#14
Super Member
Join Date: Jul 2010
Location: RVing in USA and Canada
Posts: 1,413
Izaquilter,
You may want to check with your local hospital to see if there is a group with the same or similar condition. Often many of our questions can be answered in these groups and the support of others who have been through similar experiences helps so much.
Best Wishes
You may want to check with your local hospital to see if there is a group with the same or similar condition. Often many of our questions can be answered in these groups and the support of others who have been through similar experiences helps so much.
Best Wishes
01-14-2011, 10:56 AM
#15
Super Member
Join Date: Nov 2010
Location: Florida
Posts: 1,611
I'm so sorry to hear about your heart. One thing you might want to do while you wait to see that doctor is research your condition. You can get current information on mayoclinic.com. I use their site often to check out things before we go to the doctor or right after getting a new diagnosis. It has been great help to our understanding what is going on and finding out the causes and cures and most importantly, to help us develop a list of questions to ask the doctor. Allotted appointment times are so short today that it is good to prioritize your concerns and make sure you control at least a part of the consultation. I wish you a very good outcome and am sending prayers and a big hug your way.
01-14-2011, 10:58 AM
#16
Banned
Join Date: Dec 2009
Location: England
Posts: 2,365
Originally Posted by Lacelady
I'm so sorry about your health issues - I have breathing problems due to a heart problem too - they decided mine is a Diastolic dysfunction. I have had it since 2003, and have oxygen in the house for when I need it, but don't use it 24/7.
It took me a good while to adjust to being what they they called disabled, but I have found ways to cope. The wheelchair they gave me was too hard for me to use - I got breathless just trying to push myself a short distance, so I bought a battery powered motorised scooter instead. I pace myself, doing small tasks, and then resting for a short while, and I have an afternoon snooze too, if I need it.
On the good side, quilting isn't all that strenuous, so I have continued to enjoy my hobby, big time. I don't cut out a whole quilt in one go - and only sit at a machine for a max of an hour at a time, but it is all doable, so don't lose heart (sorry for the expression) just yet.
You might have to learn to accept help, or even to ask for it if you need it, but it isn't the end of the world.
Sending lots of (((((((((((HUGS)))))))))))))))))
It took me a good while to adjust to being what they they called disabled, but I have found ways to cope. The wheelchair they gave me was too hard for me to use - I got breathless just trying to push myself a short distance, so I bought a battery powered motorised scooter instead. I pace myself, doing small tasks, and then resting for a short while, and I have an afternoon snooze too, if I need it.
On the good side, quilting isn't all that strenuous, so I have continued to enjoy my hobby, big time. I don't cut out a whole quilt in one go - and only sit at a machine for a max of an hour at a time, but it is all doable, so don't lose heart (sorry for the expression) just yet.
You might have to learn to accept help, or even to ask for it if you need it, but it isn't the end of the world.
Sending lots of (((((((((((HUGS)))))))))))))))))
I have oxygen machines but try not to use too much yet.
Have bought disabled scooter and trailer to attach to my car to carry it, so can still be independant , have v v low energy but quilting and reading are good to keep mind active and of course this board.
Do not despair or give up. hugs.
01-15-2011, 07:02 AM
#18
Senior Member
Join Date: May 2010
Location: Dewittville, NY
Posts: 603
There are two associations you should contact. Like above the American Heart Asso. and American Lung Asso. Also, National Jewish Hospital in Denver CO has a load of information regarding the lungs and breathing problems so a good place for info; just log on to Natl Jewish Hosp/Den and go from there. Prayers are on their way to you along with some angels to deliver them. God keep you in His love.
01-15-2011, 07:21 AM
#19
Power Poster
Join Date: Sep 2007
Posts: 18,726
First of all...you need to talk to YOUR Dr about it. When you read the internet (great tool that it is), you will come away with just what you did...a feeling that you've been given a death sentence. In all probability, that isn't true. Your situation is different from anyone else's. I have been dealing with DH's medical conditions for a long time now and I've learned that if the Dr. won't/can't answer my questions or explain things to us in a way that I can understad...its time to change Drs.
Hopefully, your condition is one that can be controlled with meds and behaviour modifications and that you can get started on that path soon.
Hopefully, your condition is one that can be controlled with meds and behaviour modifications and that you can get started on that path soon.
01-15-2011, 08:03 AM
#20
Member
Join Date: Jan 2010
Location: Boise Idaho
Posts: 73
http://www.mayoclinic.org/pulmonary-hypertension/
There are lots of information sites. Just google Pulmonary Hypertension
Below are two online support groups. I goggled 'pulmonary hypertension support groups"
You can get through this. You can adjust. ((((hugs))))
http://www.phassociation.org/
http://www.mdjunction.com/pulmonary-hypertension
There are lots of information sites. Just google Pulmonary Hypertension
Below are two online support groups. I goggled 'pulmonary hypertension support groups"
You can get through this. You can adjust. ((((hugs))))
http://www.phassociation.org/
http://www.mdjunction.com/pulmonary-hypertension
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