Some urgency.....

shop deals on amazon
Shop deals on ebay
Advertise with us
Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
N

njean

Premium Level
Supporting Member
Joined
Jul 19, 2007
Messages
4,830
Location
New Mexico
I went for my 6-month Echo on Tuesday & while the dr seemed pleased w/how my valves looked & sounded, he said my Pulmonary Pressure was very high again, 88mm. I kind of suspected because I've been having a nagging little headache every single day for the past few weeks but nothing else other than my regular aches & pains. The doctor sounded very concerned about the high PH & said it has to be addressed or it could be fatal! :eek:

So he wrote me a prescription for "revatio" & wants me to take it for 1-month & then re-check me in a month to see if it is working. Well, I'm still waiting for my insurance company to approve payment for it; it costs $1300 for the month's supply. The dose is one 20mg pill, 3x a day. My husband said, we'll get it & I'll pay for it somehow but I refuse to do that! We can't afford to buy it out of our pocket!

What irritates me the most, is that the insurance co wanted my doctor to call them to answer some questions concerning the Rx & my doctor didn't bother contacting them until late Thursday or Friday morning! :mad:

I called the pharmacy yesterday & they said the Rx is still open, no contact from insurance co. We are fixing to go to Austin Christmas weekend to visit the kids & grand-kids & I wanted to start taking the med before we left but the way things are going, I don't know now!

Get so disgusted w/doctors, insurance co, etc. sometimes!

Thanks for listening to my babbling!
 
When Joe was put on Tracleer, his doctor had to almost write a grant for him to get approved. It was also an extremely expensive drug, right in the neighborhood that you have mentioned. It took about a week or more before everything was approved.

I hope you get approval for it very soon.

Keep in mind that these drugs are powerful and there is a little period of adjustment with some initial side effects.

You will be in my prayers.
 
Bina said:
http://www.revatio.com/
I'm sorry to hear about this.....but if the med is good, then buy it on a credit card and worry about the insurance coverage later.
Click to expand...

Sorry, I can't condone that logic. What if the insurance doesn't pay? If they won't, then she contact the drug manufacterer through Needy Meds and get it for free possibly.

http://www.pfizerhelpfulanswers.com/pages/Programs/programdetails.aspx?p=12

Check into this, they will even help you with appeals to your insurance carrier.

How can this program help?
The RSVP program provides reimbursement and appeals assistance to insured patients. It also provides free Pfizer medicines to eligible uninsured and underinsured patients.

What Pfizer medicines are available?
Assistance is available for the following medicines:

Rescriptor (delavirdine mesylate)
Revatio (sildenafil citrate)
Selzentry (maraviroc)
Vfend (voriconazole)
Viracept (nelfinavir mesylate)
Zyvox (linezolid)

What are the eligibility requirements?
To be eligible, you must:

Be uninsured, underinsured and have no coverage for the product requested, or be eligible for a hardship exceptionPfizer understands that some patients with prescription coverage may have difficulty paying for medicines if they are experiencing significant financial or medical hardship. These patients may apply for Hardship Exceptions through the Pfizer RSVP Program.Be a US resident
Meet the household income guidelines for this program

Where would I get my medicine?
Revatio and Vfend will be sent to your doctor’s office. You may pick up your Zyvox at the pharmacy.

How do I apply?
Call 1-888-327-7787 for assistance for RSVP. An RSVP counselor will be happy to help you.

2008 total yearly household income at or below: (these figures are for % FPL)

For households with more than 8 people, please call 1-800-707-8990.
 
Just wondering...I may have missed a prior post, and may be just fishing behind the net...

Have you had a right-heart cath to validate the echo results? Echoes can be quite unreliable for pulmonary pressures.

I'm not suggesting you hold off on treatment. Seconday Pulmonary Hypertension is fairly common with valve problems, and sometimes it just walks into Primary Pulmonary Hypertension even when the valve issue is relieved.

Just concerned to know what they've done to verify this.

Best wishes,
 
Thanks guys! I am going to call the ins co again on Monday & see what if anything has been done. When I called yesterday evening, the automated service said that my case was pending.

And yes Nancy, the doctor said that one of the side affects could be swelling of the feet which I don't need more of but he said that I have to go on something, soon!

Thanks for the links Ross; I'll look into them.

And Bina, yes I was at the verge of using my credit card but then I thought, what if they don't pay for it, then what?

So, I'm going to play the waiting game for a few more days, even though my life's at stake which doesn't mean "squat" to them!!
 
Norma, it's your call.....you mentioned the condition could be "near fatal"....I would be running to the nearest pharmacy with credit card in hand.
Many years ago my late Mom needed a very pricey med that wasn't available in Canada yet. My Dad (and his credit card), drove from Montreal to Plattsburg on a Friday to make sure that she had her new med.
 
tobagotwo said:
Just wondering...I may have missed a prior post, and may be just fishing behind the net...

Have you had a right-heart cath to validate the echo results? Echoes can be quite unreliable for pulmonary pressures.

I'm not suggesting you hold off on treatment. Seconday Pulmonary Hypertension is fairly common with valve problems, and sometimes it just walks into Primary Pulmonary Hypertension even when the valve issue is relieved.

Just concerned to know what they've done to verify this.

Best wishes,
Click to expand...

Well, you know Bob in answer to your question.....In June I had another Echo & my the Pulmonary Hypertension showed up again in the 80's. So, the doctor did a "right heart cath" about 6 days later in the hospital & the pressures were back down in the mid 50's so he didn't put me on meds then. Now, six month's later, the Echo he did in his office again reveals the PH is back in the 80's.

It all stems from the fact that my 33-year old mechanical mitral valve is NOT working properly. The leaflets have become overgrown w/scar tissue & they are only opening & closing half way. But they don't want to do surgery to replace the valve because it is so high risk & they're not sure that I'd survive a 4th OHS.
 
Revatio

Revatio

We were uninsured last December when we were told the same thing for my husband Stuart.We contacted the Patient Prescription Assistance office of the University of Utah for help. They in turn contacted the manufacturer Pfizer and they sponsored us for one year. The out of pocket expense was
$1150 a month for the same 3x20 mg prescription as you. So I would definitely contact the hospital that you had your surgery and go through their Patient Prescription Assistance program. Pfizer and all the drug companies have programs to help individuals with or without insurance. If your insurance company is giving you the runaround, get the Patient Prescription Assistance program folks involved....they will know how to jump through the insurance hoops. Now that we have insurance they also had many questions and contacted our Physician as to the reasoning for Revatio. After he wrote a letter to the insurance company they approved it and our copay is around $40 a month or $62 if we do the 90 day supply that is mailed to us. Stuart had an awesome checkup last month and has since been set up for YEARLY echos because the results were so impressive. He may be on Revatio for the next few years.
 
baldstuart said:
We were uninsured last December when we were told the same thing for my husband Stuart.We contacted the Patient Prescription Assistance office of the University of Utah for help. They in turn contacted the manufacturer Pfizer and they sponsored us for one year. The out of pocket expense was
$1150 a month for the same 3x20 mg prescription as you. So I would definitely contact the hospital that you had your surgery and go through their Patient Prescription Assistance program. Pfizer and all the drug companies have programs to help individuals with or without insurance. If your insurance company is giving you the runaround, get the Patient Prescription Assistance program folks involved....they will know how to jump through the insurance hoops. Now that we have insurance they also had many questions and contacted our Physician as to the reasoning for Revatio. After he wrote a letter to the insurance company they approved it and our copay is around $40 a month or $62 if we do the 90 day supply that is mailed to us. Stuart had an awesome checkup last month and has since been set up for YEARLY echos because the results were so impressive. He may be on Revatio for the next few years.
Click to expand...

Wow, your post is so encouraging! All this week I have been feeling kind of down about it all & just wondering if one more med is going to help me any more! You have boosted my spirits! :) Thank you & I hope you husband continues to do well!

If I don't hear anything by mid-day on Monday, I'm going to do something believe me! It's useless to do anything on the weekend so I'll just have to wait until then.
 
I'm sorry to hear this, but hope you get the drug and have the same good result as Stuart. You will be in my thoughts and prayers.
 
God is awesome!

I just got off the phone w/the pharmacy where my Rx for "revatio" is pending & they are going to give me enough of the meds to cover me for the weekend & then on Monday see what happens w/the insurance co.

Isn't that wonderful?!!! I almost feel like crying! So, I am going to go get ready so I can go pick up the meds! Thanks, bye!! Love you all!
 
Norma Just read your post. I will continuing praying all goes well. You are such a trooper!! Glad things are working out and you can get some relief of that pulmonary pressure. Keep us posted.
Crystal:)
 
Norma, I don't really have anything to add here other than I'm glad you got some pills for the weekend and I hope that the rest of it gets sorted on Monday. Sorry you got this news but hopefully this new medicine will help.


Kim
 
Norma-

I was so happy to read the latest good news!

I think your doctor is pretty special. Many would just ignore your high PH pressures. But he was really knowledgeable enough to seek help for you.

The bottom line is it really doesn't matter whether the PH is primary or secondary. It is the pressure that does the damage, and yes, it can be fatal if not taken care of. It was a contributing factor in Joe's death. He had to go off the Tracleer due to liver problems, which it can cause, and his health went downhill after that.

So, good for you!

Everyone with PH has to be vigilant about this problem and seek care for it. If one doctor won't help you with it, find another. Your internal organs were just not designed to have that high pressure bombarding them constantly.

And for those who don't know, pulmonary hypertension (PH) is not the same thing as regular hypertension.

Different animal, different treatments, different prognosis.
 
Dear Norma,

So sorry for what you went through and sorry I did not check up the forum before. But I am glad that you will start the medicine now and I will continue my prayers for you so that you will hear good news on Monday too. God is great and He will reward you --this blessed season will bring new blessings to your life.

With prayers, Eva
 
baldstuart said:
We were uninsured last December when we were told the same thing for my husband Stuart.We contacted the Patient Prescription Assistance office of the University of Utah for help. They in turn contacted the manufacturer Pfizer and they sponsored us for one year. The out of pocket expense was
$1150 a month for the same 3x20 mg prescription as you. So I would definitely contact the hospital that you had your surgery and go through their Patient Prescription Assistance program. Pfizer and all the drug companies have programs to help individuals with or without insurance. If your insurance company is giving you the runaround, get the Patient Prescription Assistance program folks involved....they will know how to jump through the insurance hoops. Now that we have insurance they also had many questions and contacted our Physician as to the reasoning for Revatio. After he wrote a letter to the insurance company they approved it and our copay is around $40 a month or $62 if we do the 90 day supply that is mailed to us. Stuart had an awesome checkup last month and has since been set up for YEARLY echos because the results were so impressive. He may be on Revatio for the next few years.
Click to expand...

Why go to someone else when it's something you can do yourself and skip the middleman and waiting? ;)
 
njean said:
Well, you know Bob in answer to your question.....In June I had another Echo & my the Pulmonary Hypertension showed up again in the 80's. So, the doctor did a "right heart cath" about 6 days later in the hospital & the pressures were back down in the mid 50's so he didn't put me on meds then. Now, six month's later, the Echo he did in his office again reveals the PH is back in the 80's.
Click to expand...
So, When they do an echo, the result is in the 80s. When they do a right heart cath, the result is in the 50s.

I'm not saying it's a technician's error, but the purpose of the right-heart cath is to check the echo - and it said that the echo was wrong. Echo was in the 80s, Cath was in the 50s. Not very close. Now the next echo says it's in the 80s again. Sounds like the same technician is figuring the same thirty points high again.

The right heart cath is reliable. The echo is decidedly not. I suggest you consider getting a separate echo from another place if you can, without mentioning the PH or forwarding files, and see if it shows up. This has some potential to be a technician's repeated computation error.

Best wishes,
 
Re: Ross

Re: Ross

Unfortunately Pfizer would not deal directly with us.All info had to go thru only the Hospital Rep. We were given meds every three months shipped directly to the Hospital to the Surgeons office.They called us and we would go pick them up. It took a lot of paperwork and about three weeks for them to make the decision.We were grateful for everything the Hospital Rep did for us.:D
 
You must log in or register to reply here.

Latest posts

Back
Top