wrong diagnoses, bad cardios and other fun stuff

[bvdr]

Maybe after my March echo I will opt to see a PH specialist. I too find that this issue isn't really addressed. My cardiologist did say that the amount of pulmonary hypertension (46 mmHG pre-op, 42 mmHG most recent echo) I have should not be enough to be responsible for the moderate pulmonary valve regurgitation that I have developed. I will give my heart until then to adjust and if the findings have not improved then I will look for some answers and treatment elsewhere. Until then, I think I am just doctored out and will take a sabatical. Nancy is right though about it being something that is highly specialized and needs to be treated appropriately.

MitchyB, I'm so glad things are better than you were led to believe they might be!

 

[Harrybaby666]

Well, here is the thing....

Well, here is the thing....

Hi Michy,

This is what I have been told... Because of my chronic lung problems from childhood up (I have had TONS AND TONS of viral infections, and because of that, I have developed Cardiomyopathy. Then I was told that because of all my other lung problems (Sleep Apnea, Asthma, Chronic Bronchitis, and now Pulmonary Hypertension), and having them for so long (since birth) that these conditions are wearing out my lungs and heart (the pulmonary hypertension, I was told by someone on PHAssociation, would eventually rip my heart valves away from the lining of the heart, thus making the leaking worse and worse....This is why I am so adamant about how that nasty nurse of mine acted, and why I am persistant on getting treated...and soon...not later, but soon. WHAT A HORROR STORY!!!! WHEW!!! LOL I can't believe that this has actually been put into perspective for me....LOL I guess I should value this knowledge... Thanks for all your support and encouragement Michy, I know we will get through this together somehow. Take Care, Harrybaby666 (And I stress: !!!! LOL)

P.S. Do You think if I give my doctor/and especially my nurse one of these upside the head that they would finally get the message? LOL

 

[Mary]

Harry,
You're not having any luck at all the way it is going. Why not turn the tables on them, and attempt to kill them with kindness?
Perhaps the unexpectedness of it will jolt them into acting like competent, compassionate professionals.
You might try it; you don't have much to lose the way it's going now.
Mary

 

[Harrybaby666]

Hi Mary....Been There, Tried that..LOL

Hi Mary....Been There, Tried that..LOL

Hi Mary,

I have tried that too. I mean, my doctor is fine, because he is not from this area, but I have tried to be nice with the nurses and they are not at all receptive to it....in fact, they seem to become more sarcastic and rude.. I wish I knew why....anyway, I think that after I get my SS I will be moving out of the area anyway, and hopefully, a fresh start somewhere else will work out better. Harrybaby666

 

[Nancy]

Just a silly thought, Harry, but do you suppose that nurse had never heard the term pulmonary hypertension, and thought you were getting all upset over hypertension?

It's not like it's a term that's heard in many doctor's offices, and I cannot tell you the people who have confused Joe's problems, and wonder what all the fuss is about. So many people have asked him what he's stressed about, and that he had to learn to relax. And when we tell them he almost died from it, they look at us like we had three heads each.

They really have to rename that disease.

Even EMTs have not understood.

 

[Harrybaby666]

Well, I could ask her....If I don't get slapped first. LOL

Well, I could ask her....If I don't get slapped first. LOL

Hi Nancy,

I guess I should ask her, but I am wondering if I am going to get the same lecture that they have been giving me and telling me to not pay any attention to any medical information on the internet as it is just garbage....I will ask her though, to see if they jump right on the band wagon and get me into that doctor, I mean, after all, Dr. Donovan told me to "let the specialists handle things" and I was only doing what he told me to do....But I will ask. Harrybaby

P.S. Wouldn't you think though that when they hear the term Pulmonary Hypertension though that they would logically piece the two terms together? I mean I perceive this as :

Pulmonary-Pertaining to the Lungs + Hypertension-High Blood Pressure = High Blood Pressure Of The Lungs...

I mean, how hard is it for them to figure this out? I don't mean to make them sound stupid, but, as I see it, if I can piece the two terms together, then they certainly ought to be able to.... I guess what I am saying is I don't want them to make me feel stupid for a mistake that they made by not listening to the patient instead of relying on their tests which I might add that they told me were not 100% full proof anyway.... Harry

 

[McCln]

MichyB

MichyB

There is always a problem doctor or two out there. They are trained in congetial defects, but not how to be a good doctor. I had one cardio who took my blood pressure and said that it was 500 over whatever. I felt the the pressure going up as he talked. I later talked to my PCP doctor and she tested my pressure for several weeks before declairing me no high blood presure person. It does run in my family, but never had a cardio take my pressure before. So it all goes with the territory. You never know what kind of doctor you will get till you get there. Good luck and keep hanging in there and congrats on finally getting a straight answer.

 

[Abbanabba]

Just a silly thought, Harry, but do you suppose that nurse had never heard the term pulmonary hypertension, and thought you were getting all upset over hypertension?

That would not surprise me in the least Nancy!! Especially if she's only half paying attention, picked up on the one word and gotten on her high horse from there.

A : )

 

[Harrybaby666]

Hi Anna...Gosh, I do love that name....

Hi Anna...Gosh, I do love that name....

Hi Anna,
It sure is amazing how uncaring and rude people can be, and I have had this nurse now for 1 year this month and in each and every one of my visits to the doc, she has not shown 1 ounce of kindness, or compassion...it's always been very stern and business like. I do think that she is on a high horse, because I don't think she likes the fact that as a patient, that I should have a say in what goes on with my body...BOY, DO I EVER DISAGREE WITH THIS ONE!!! I truthfully and wholeheartedly believe that I have a right to investigate any possiblities and bring them to the doctor's attention, and because I am the one who is having the bodily failure, that they should pay attention to what I say instead of relying strictly on tests. Pardon my venting...I am just not feeling well, physically, or about the situation I am in at the moment....Take Care, Harrybaby666

 

[Nancy]

She might have been able to put the two terms together pulmonary and hypertension, and still might not "get it", because she doesn't know what it is. She might be saying, "OK, high blood pressure in the lungs, so what", lots of people have hypertension everywhere in their body.

I do believe when you have a reaction that you shouldn't expect, then the person you're talking to just doesn't understand. Maybe I'm just a crotchety old witch, but you have to look deeply into the person's eyes and see if there is a light bulb in there.

 

[Harrybaby666]

No....Your Not A Crotchity Old Witch...Your Just Concerned..

No....Your Not A Crotchity Old Witch...Your Just Concerned..

Morning Nancy,

It sounds like your like me, one who wants to stay on top of things....and rightly so given the amount of Illnesses that your hubby and I have. I think that I will see the nurse when I go over to pick up a copy of my records today and then I will ask her and see what she says...this ought to be good...Thank You Ever So Much For Keeping Me Motivated enough to fight this little problem....Usually, I am better at standing my ground, but this time it was alot harder. Thanks again Nancy...Harrybaby666

 

[Abbanabba]

Maybe I'm just a crotchety old witch...

Oh Nancy!!! You just gave me my biggest laugh I've had all week!!! You're an absolute treasure and don't let anyone tell you any different

A : )