Re: Pulmonary Hypertension

July 26, 2009

Jack,

You are such a good neighbor! Buying her an oximeter is of course a great idea. It's so basic but it's so rarely thought of and sometimes actively discouraged. Frustrating!

It sounds as though your neighbor may have very serious pulmonary hypertension though obviosly I have no way of knowing for sure. Sildenafil (viagra is the brand name) when it's used,has been used for some types but not all types of PH. It's possible she's already progressed beyond the window of opportunity to use that particular drug.

Joyce Dalton who has since passed away was treated for severe pulmonary hypertension for months before she died with an IV drug called Flolan. She had an iv line in her chest where the drug was on a continuous infusion.

From your description this does not sound like the same drug your neighbor is contemplating but it may be if her description is off just a little bit.

Now her doctor may be in the wrong and of course it's tempting to think there must be a simpler, less expensive answer but it's possible there may not be. I know that as horrendous as the Flolan was Joyce would not have traded the last few months of her life for anything.

Thanks Jack for being the kind and generous soul that you are!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Group <Breathe-Support >Sent: Sunday, July 26, 2009 2:36:04 PMSubject: Pulmonary Hypertension

I need some comments and advice on this. My 70 something neighbor told me yesterday that her doctor told

her that she did not have heart problems as she had previously been told, but that she had pulmonary hypertension.

She said that he told her they would have to insert a catheter into her lung and inject the medicine. Then one that floored me: she would have to take this medicine weekly and that it would cost $4,000.00 a month, which would not be covered.

After I picked up my lips from the floor, I said immediately, "Go see another doctor." I explained that to my knowledge that the more common treatment was viagra, which was much cheaper and had the added benefit

of sharing it with her husband. She had no idea what viagra was or what it was used for, so I told her it

helped to open up the blood vessels in lungs so that the blood could flow more freely, reducing the hypertension. I decided the other usage was beyond her comprehension.

This couple have a very small income and $4,000 a month for medicine has nearly paralyzed. She has no

oximeter, so I have told her that I will get her one and will teach her how to use it and record her sats so

her doctor can see her oxygen needs. She was on ogygen, but the doctor took her off. And this lady

lives in a two story house and can barely make it to the top.

I would like to hear from those of you who have HP that I can give to her.

Jack79/IPF - UIP/dx06/05 Maine

July 26, 2009

Jack

i have heard that Tracleer, the med used for PH is very expensive

some of the manufacturers will supply it gratis, if you meet low income requirements

she needs to contact the company

there are other places that will help out too, but don't remember which ones -- someone else on board will probably supply more details

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Pulmonary HypertensionTo: "Breathe-Support Group" <Breathe-Support >Date: Sunday, July 26, 2009, 2:36 PM