should I fire my cardio??

[LisaD0365]

I had to go to the ER Saturday...it was getting to the point where I couldn't breathe unless I was bent forward..and then....don't even think about talking...I was given Lasix IV push....was told the swelling wasn't going to go completely down till I got my PH in check....so am going to look into Tracleer...(never heard of it)...or even getting into the PH clinic they have at IA City....but I am going to get more knowledgeable about PH first...I have read up on CHF and Cardiac Asthma and all my other ailments...so need to be an advocate of my health with PH....(not even sure what my pressures are...)

You're right Nancy....I do have an involved medical history....every doc I meet in ER or otherwise who haven't met me yet....just grins and tells me I am complicated....that is why I figure I should be my own advocate when some docs think I am too complicated to even mess with...

Thank you everyone who worried about me and gave me good advice...I am going to be alittle more vocal when it comes to my health...even to my hubby...

 

[ALCapshaw2]

You're right Nancy....I do have an involved medical history....every doc I meet in ER or otherwise who haven't met me yet....just grins and tells me I am complicated....that is why I figure I should be my own advocate when some docs think I am too complicated to even mess with...

Thank you everyone who worried about me and gave me good advice...I am going to be alittle more vocal when it comes to my health...even to my hubby...

Maybe you should start with being more vocal ESPECIALLY "to your hubby". He needs to truly understand the severity of your condition and be able to be your advocate if you become incapacitated.

Since you are home and 'sounding' better, I assume the immediate crisis has been handled. Becoming more educated about your condition and finding the RIGHT doctors to treat your multiple issues is the next step.

Good Luck in your quest to achieve better health through proper treatment!

'AL Capshaw'

p.s. Where do you live in Iowa?
I was there in a 'previous life'.

 

[Nancy]

Lisa-

Please get a complete workup from a PH specialist. Other doctors don't see enough (or never see) any cases of PH to be able to take care of you adequately, even ordinary cardiologists or pulmonologists. It is a RARE condition and is FATAL if it is not treated correctly. It is also progressive. Echo cardiograms are not the true measure of PH, the right heart cath is the gold standard test.

And it is extremely common for PH patients to have docs not want to mess with them when PH is discovered. It just complicates everything.

So if you have a PH clinic nearby, that's where you should be.
Joe almost died from his PH, he was inches away from complete organ failure and had to spend a month in the hospital most of it in the heart transplant unit, not because he was a transplant candidate, but because he was that ill.
Tracleer saved his life. It is an oral medication. Some can take, others have to be on Flolan or Remodulin, which are not oral. Those with very mild PH have other options, but still have to be watched very carefully.

I urge you to become a member of the PHA website also, and post there. You won't feel so alone and you'll get very good advice from those who have PH. They will, every one of them, hammer on you to get a PH specialist and to advocate strongly for your health.

Best wishes, Lisa

 

[geebee]

Lisa,

I am happy to hear from you - was worried when you didn't post for a couple of days.

Please get very involved with your care - no one will be concerned as much as you so it starts there.

Please keep us posted.

 

[perkicar]

......
You're right Nancy....I do have an involved medical history....every doc I meet in ER or otherwise who haven't met me yet....just grins and tells me I am complicated....that is why I figure I should be my own advocate when some docs think I am too complicated to even mess with...

Thank you everyone who worried about me and gave me good advice...I am going to be alittle more vocal when it comes to my health...even to my hubby...

Lisa, I think you hit the nail on the head about being complicated. I've had several folks question my choice of going to Cleveland for my surgery when we have Jewish Hospital here where they do alot of heart procedures and implanted the first Abiocor artificial heart. I learned more about what radiation had done to my heart in one visit there than anyone had ever even mentioned to me when I went to the cardiologist or the oncologist here. Even my PCP here gets a little overwhelmed at how complex my history is. Last week when I told her I had gone to CCF for an eval, she tried to finish my sentence and tell me that I wasn't going to have surgery yet. She was shocked when I told her that it was 3 weeks away and what the echo there had found. Of course, this is the same doc who wouldn't refer me to a cardiologist in 2001 when my aortic stenosis was diagnosed because I'd had an echo 5 years earlier that had been OK. But we talked about that and she apologized. (I just found one on my own, thank goodness I didn't need a referral).
So I'd listen to those who've experienced the PH and go to that clinic in Iowa City I think you said. Sometimes it's better to let the experts have a lick, even when it's inconvenient. And tell the cardiologist you were seeing thank you very much but you'll be taking your case elsewhere, bonehead.

 

[perrybucsdad]

Ok... stupid question.... what is PH? Pulmonary Hypertension?

 

[LisaD0365]

What PH is......

What PH is......

Ok... stupid question.... what is PH? Pulmonary Hypertension?

I got this from the PHA website....(there is no stupid question...only stupid people who won't ask questions.... )

Pulmonary hypertension is a rare blood vessel disorder of the lung in which the pressure in the pulmonary artery (the blood vessel that leads from the heart to the lungs) rises above normal levels and may become life threatening.

Symptoms of pulmonary hypertension include shortness of breath with minimal exertion, fatigue, chest pain, dizzy spells and fainting. When pulmonary hypertension occurs in the absence of a known cause, it is referred to as primary pulmonary hypertension (PPH). This term should not be construed to mean that because it has a single name it is a single disease. There are likely many unknown causes of PPH. PPH is extremely rare, occurring in about two persons per million population per year.

Secondary pulmonary hypertension (SPH) means the cause is known. A common cause of SPH are the breathing disorders emphysema and bronchitis. Other less frequent causes are the inflammatory or collagen vascular diseases such as scleroderma, CREST syndrome or systemic lupus erythematosus (SLE). Congenital heart diseases that cause shunting of extra blood through the lungs like ventricular and atrial septal defects, chronic pulmonary thromboembolism (old blood clots in the pulmonary artery), HIV infection, liver disease and diet drugs like fenfluramine and dexfenfluramine are also causes of pulmonary hypertension.

Pulmonary hypertension is frequently misdiagnosed and has often progressed to late stage by the time it is accurately diagnosed. Pulmonary hypertension has been historically chronic and incurable with a poor survival rate. However, new treatments are available which have significantly improved prognosis.

Recent data indicate that the length of survival is continuing to improve, with some patients able to manage the disorder for 15 to 20 years or longer.

 

[Nancy]

It is Pulmonary Hypertension, sometimes also called pulmonary arterial hypertension. It is high pressure within the lung and pulmonary system. It is not related to simple hypertension and in primary PH the lining of the pulmonary vessels become populated with abnormal cells which constrict when they shouldn't, causing high pressures. Eventually it causes right sided heart failure and if it isn't treated, it will be fatal.

Secondary PH has many causes.

 

[SHerrin Hutt]

I was so glad to read your post. I was worried that we hadn't heard from you. I have been to IUPUI & Cleveland Clinic & Maylo clinic for my Hypertenion & Heart problems. You have to look out for your self cause no body else will.

 

[KenKeith]

Subsequent to my hospital stay for a CHF event manifested by mild pulmonary edema, I was told among other things to weigh myself each morning and if there is a gain of < 3 lbs. to contact the doctor immediately. In my opinion it is negligence not to recognized and immediately treat such an obvious problem as stated by the original poster.

 

[LisaD0365]

In my opinion it is negligence not to recognized and immediately treat such an obvious problem as stated by the original poster.

I left 5 phone messages and several emails to my now ex cardio....he chose to ignore them...even when I would visit with the nurse there...she would tell me she would give him the message...but he chose to not answer them....
...I told the Heart Center that I gained 18 lbs....the cardio chose not to help me....
I finally got mad at everyone....(including hubby) and called my GP...he was worried since I had so much fluuid...that orally wouldn't work....I am now looking into getting an appt with a cardio in Ia City and I have a PH nurse coordinator helping me get an appt at the clinic....

 

[Nancy]

Can you see me doing the "Happy Dance" for you? I'm so glad to hear that things are moving in a positive direction for you. Good for you!

 

[KenKeith]

Lisa,
I don't wish to sound litigious, but if someone is injured due to irresponsibility and carelessness that fails to meet professional standards there are remedies; you may not be getting a response from your ex-cardio as he/she may feel threatened. If nothing else you or any other patient has the right to a rational explanation to questionable actions or inaction from the professional in charge of their care. That is not unreasonable.

I was given written instructions to be followed on release from the hospital. For the weight issue, if I didn't notify a doc with a 3 lb. or more gain in a day, any subsequent problems would be my fault (as it should be!).

I feel your frustration!. My first cardio answered questions with grunts and groans and very few words. When he did speak the accent was so thick I couldn't understand him. He had an irritating, supercilious manner and he was dismissed. When the hospital questioned my reason for requesting my medical records, I told them I did not understand my medical condition and the doc's explanation or lack thereof was unacceptable to me. I was not charged $20 for copies.