Re: Trekleer

[Guest guest]

Wow , You really are faced with a tough decision. I will be praying, praying, praying that God gives you wisdom to make the right choice. Will there be any side effects? How much does the doctor feel it will improve your breathing and slow the hypertension? Is there anyone who is currently on it that you can talk to? Take your time deciding and don't rush too much. God bless you- Sarcoid/PF 2006tuliparizona wrote: Well, today I

received my first shipment of this new medication. And today I had another pulmo. appointment. Talked at length about this medication and what was expected results. Seems I have 3 options: #1...Not take it, take only what I take now (Prilosec) #2...Take this new med. and be part of a study. Med. will be paid for but I am not assured that I wont get the placebo.#3. Take the medecine but pay for it privately and know for sure I am getting the real thing. Because the medecation now costs $3900.00 per month, Cigna will only pay 40%.The doctor said that IF if works for me that I could expect to not be so out of breath and be able to fuction a little better and not faint so much. It will not slow down the disease but only helps with the pulmonary hypertension which developed because of the disease. Even though he states I am in the "end stages" he also states that I should be more concerned with the pulmonary hypertension

killing me sooner than my disease will. I have not taken or opened the bottle of medecine yet...still deciding what to do. I will decide by tomorrow.I hate to put my life expectancy into dollar signs but it is an awfully lot of money to pay out for not much return. Thanks for listening to all of this. Holidays sure are difficult for me. I figure this is my last holiday and get to feeling sorry for myself.Thanks again __________________________________________________

[Guest guest]

,

I too was diagonised with HP and I have an apt with a Cardiologist Jan 23rd. I think theyre gonna wanna do a heart cath on me, what did you have to have done? Any information you have I would appreciate.

Vicky81856

[Guest guest]

...I know the pressure you are feeling as you try to make your decisions for your life. I too am wrestling w/decisions.

I try to get quiet in my 'gut' and hopefully I can hear God speak. I read once, "Lord, I'm making so much noise I can't hear a word you say."

We pray for each other, to know deep inside what to do.

Love and hugs to you. Sher

"Don't worry about tomorrow, God is already there"

Trekleer

Well, today I received my first shipment of this new medication. And today I had another pulmo. appointment. Talked at length about this medication and what was expected results. Seems I have 3 options: #1...Not take it, take only what I take now (Prilosec) #2...Take this new med. and be part of a study. Med. will be paid for but I am not assured that I wont get the placebo.#3. Take the medecine but pay for it privately and know for sure I am getting the real thing. Because the medecation now costs $3900.00 per month, Cigna will only pay 40%.The doctor said that IF if works for me that I could expect to not be so out of breath and be able to fuction a little better and not faint so much. It will not slow down the disease but only helps with the pulmonary hypertension which developed because of the disease. Even though he states I am in the "end stages" he also states that I should be more concerned with the pulmonary hypertension killing me sooner than my disease will. I have not taken or opened the bottle of medecine yet...still deciding what to do. I will decide by tomorrow.I hate to put my life expectancy into dollar signs but it is an awfully lot of money to pay out for not much return. Thanks for listening to all of this. Holidays sure are difficult for me. I figure this is my last holiday and get to feeling sorry for myself.Thanks again

[Guest guest]

Dear : You sure have a hard decision to make. Is it possible to go on the study for a month to see if you are being helped and if nothing changes assume you are getting the placebo and drop out of the study? Then you can try the real medication for a month at the high cost and see if it works for you. It would seem after a month of trial you would know if you are being helped by it and wouldnt have to spend your lifes savings by continuing to take it for nothing. Just a suggestion. I know we are supposed to stay with a study once started, buy hey, its our life and we have to do what is best for ourselves and especially when we have a limited amount of time to do it. Dont give up hope dear for though none of us want to leave our loved ones, I find comfort in the hope presented in God's Word that there will be a time when death, pain, sorrow will be no more and we will have a resurrection into that wonderful

world. Revelation 21:4,5. While I want to be here with my family as long as possible, I find peace knowing that death is not the end for us. God is a god of LOVE. Carolyntuliparizona wrote: Well, today I received my first shipment of this new medication. And today I had another pulmo. appointment. Talked at length about this medication and what was expected results. Seems I have 3 options: #1...Not take it, take only what I take now (Prilosec) #2...Take this new med. and be part of a study. Med. will be paid for but I am not assured that I wont get the placebo.#3. Take the medecine but pay for it privately and know for sure I am getting the real thing. Because the medecation now costs $3900.00 per month, Cigna will only pay 40%.The doctor said that IF if

works for me that I could expect to not be so out of breath and be able to fuction a little better and not faint so much. It will not slow down the disease but only helps with the pulmonary hypertension which developed because of the disease. Even though he states I am in the "end stages" he also states that I should be more concerned with the pulmonary hypertension killing me sooner than my disease will. I have not taken or opened the bottle of medecine yet...still deciding what to do. I will decide by tomorrow.I hate to put my life expectancy into dollar signs but it is an awfully lot of money to pay out for not much return. Thanks for listening to all of this. Holidays sure are difficult for me. I figure this is my last holiday and get to feeling sorry for myself.Thanks again

[Guest guest]

Vicky.. I'm 68 yrs old.. had a heart cath about two weeks ago. You should plan to be there most of the day. The procedure does not take long, but they want you to stay in recovery for about 4 hours. The reason is, they just went into the artery in your groin.. no pain, no anesthesia.. they did give me something through an IV to relax me.. don't remember much. Then an aide came in and held pressure to the artery for 20 minutes (that was wierd). The point of the 4 hour wait is to be sure the artery has a good clot. It is like a little cork in a bottle. If the cork pops out, then the artery will bleed a lot.. you would need emergency help. I was told not to drive, or to lift anything over 5 lbs for about 5 days. Protect that little cork!! At my age, I came through just fine. They found no trouble with my heart, Thank God. I pray your cath will be easy for you. Thinking of you with love, Gale in TX

[Guest guest]

,

What is the medication?

Decisions are so hard to make, especially this one. I pray that you will be led to do whats best for you. I am also in end stage...but I have hopes for many more Christmases. If it is God's will, then I will get more...if not, then there is a better place.....it is all according to God's will for me and for you. When he gets through with me, guess he will let me know.

I will keep you in my heart until your decision is made. I pray that God gives you peace with that decision.

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA >> Well, today I received my first shipment of this new medication. And > today I had another pulmo. appointment. Talked at length about this > medication and what was expected results. Seems I have 3 options: > #1...Not take it, take only what I take now (Prilosec) > #2...Take this new med. and be part of a study. Med. will be paid for > but I am not assured that I wont get the placebo.> #3. Take the medecine but pay for it privately and know for sure I am > getting the real thing. Because the medecation now costs > $3900.00 per month, Cigna will only pay 40%.> The doctor said that IF if works for me that I could expect to not be > so out of breath and be able to fuction a little better and not faint > so much. It will not slow down the disease but only helps with the > pulmonary hypertension which developed because of the disease. Even > though he states I am in the "end stages" he also states that I should > be more concerned with the pulmonary hypertension killing me sooner > than my disease will. I have not taken or opened the bottle of > medecine yet...still deciding what to do. I will decide by tomorrow.> I hate to put my life expectancy into dollar signs but it is an > awfully lot of money to pay out for not much return. > Thanks for listening to all of this. Holidays sure are difficult for > me. I figure this is my last holiday and get to feeling sorry for > myself.> Thanks again> >

[Guest guest]

Vicky

They did a cardiac cath on me during the evaluation for transplant. It

was the only test that I was scared of. The nurses took care of

everything. The room that the test was done in was very cold--it has to

be that way because of the equipment. As soon as it was done they gave

me warm blankets.

the thing that i didn't like was having to lie flat on my back for about

4 hours afterwards. I should have brought a book to listen to. there

was nothing good on tv and i didn't feel like reading a regular book and

i had trouble falling asleep

pink joyce

>

> ,

>

> I too was diagonised with HP and I have an apt with a Cardiologist Jan

23rd.

> I think theyre gonna wanna do a heart cath on me, what did you have to

have

> done? Any information you have I would appreciate.

>

> Vicky81856

>

[Guest guest]

Vicky,

I had a heart cath. done right after Thanksgiving to find out the extent of the pulmonary hypertension. I was in the hospital for three days. We had some trouble having the cath. because you have to lay flat and very still during the procedure. Well, I was not able to lay flat due to not being able to breathe. So, the first day it was stopped as soon as it started. The cardiologist put me on diuretics IV and monitored me . After taking off 22 lbs of water, they were able to have the cath. Didnt feel a thing and it only took about an hour. It was right after that that I was told I needed to start on this expensive medecine. I was told that the pulmonary hypertension is the reason for my extreme out of breath and my fainting. This medecine is supposed to help.

We'll see. But dont worry about the procedure, you dont feel a thing.

Re: Trekleer

,

I too was diagonised with HP and I have an apt with a Cardiologist Jan 23rd. I think theyre gonna wanna do a heart cath on me, what did you have to have done? Any information you have I would appreciate.

Vicky81856

[Guest guest]

The medicine is called Tracleer. It is new med for pulmonary hypertension. I wonder what makes it so expensive.

Re: Trekleer

,

What is the medication?

Decisions are so hard to make, especially this one. I pray that you will be led to do whats best for you. I am also in end stage...but I have hopes for many more Christmases. If it is God's will, then I will get more...if not, then there is a better place.....it is all according to God's will for me and for you. When he gets through with me, guess he will let me know.

I will keep you in my heart until your decision is made. I pray that God gives you peace with that decision.

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA >> Well, today I received my first shipment of this new medication. And > today I had another pulmo. appointment. Talked at length about this > medication and what was expected results. Seems I have 3 options: > #1...Not take it, take only what I take now (Prilosec) > #2...Take this new med. and be part of a study. Med. will be paid for > but I am not assured that I wont get the placebo.> #3. Take the medecine but pay for it privately and know for sure I am > getting the real thing. Because the medecation now costs > $3900.00 per month, Cigna will only pay 40%.> The doctor said that IF if works for me that I could expect to not be > so out of breath and be able to fuction a little better and not faint > so much. It will not slow down the disease but only helps with the > pulmonary hypertension which developed because of the disease. Even > though he states I am in the "end stages" he also states that I should > be more concerned with the pulmonary hypertension killing me sooner > than my disease will. I have not taken or opened the bottle of > medecine yet...still deciding what to do. I will decide by tomorrow.> I hate to put my life expectancy into dollar signs but it is an > awfully lot of money to pay out for not much return. > Thanks for listening to all of this. Holidays sure are difficult for > me. I figure this is my last holiday and get to feeling sorry for > myself.> Thanks again> >

[Guest guest]

,

As soon as I fired that post off, I saw that it was Tracleer. Isn't Tracleer an approved drug now for Pulmonary Hypertension. Why will Cigna not cover it? Tracleer is also showing promise in treatment of PF. Hard decision.

For me, the price would be overwhelming. But, if you have the money and don't do it.....think this way: you passed up a chance to live awhile longer so that the next wife can buy a bigger diamond.

Since I will not have an old age, I am having my kitchen redone with part of my old age fund. I hope the new wife hates it! ha! ha!

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA

> >> > Well, today I received my first shipment of this new medication. And > > today I had another pulmo. appointment. Talked at length about this > > medication and what was expected results. Seems I have 3 options: > > #1...Not take it, take only what I take now (Prilosec) > > #2...Take this new med. and be part of a study. Med. will be paid for > > but I am not assured that I wont get the placebo.> > #3. Take the medecine but pay for it privately and know for sure I am > > getting the real thing. Because the medecation now costs > > $3900.00 per month, Cigna will only pay 40%.> > The doctor said that IF if works for me that I could expect to not be > > so out of breath and be able to fuction a little better and not faint > > so much. It will not slow down the disease but only helps with the > > pulmonary hypertension which developed because of the disease. Even > > though he states I am in the "end stages" he also states that I should > > be more concerned with the pulmonary hypertension killing me sooner > > than my disease will. I have not taken or opened the bottle of > > medecine yet...still deciding what to do. I will decide by tomorrow.> > I hate to put my life expectancy into dollar signs but it is an > > awfully lot of money to pay out for not much return. > > Thanks for listening to all of this. Holidays sure are difficult for > > me. I figure this is my last holiday and get to feeling sorry for > > myself.> > Thanks again> > > >>

[Guest guest]

Hi I have been taking Tracleer for about 3 months. Just move up from 62.5 mg twice a day to 125mg twice a day. Have not notice any change but will have PFT and heart scan thing in January which I hope will show reduced PH. My insurance has a $20 copay on it Thank Heaven for insurance P UIP 8/00 PH 3/06 tuliparizona wrote: Well, today I received my first shipment of this new medication. And today I

had another pulmo. appointment. Talked at length about this medication and what was expected results. Seems I have 3 options: #1...Not take it, take only what I take now (Prilosec) #2...Take this new med. and be part of a study. Med. will be paid for but I am not assured that I wont get the placebo.#3. Take the medecine but pay for it privately and know for sure I am getting the real thing. Because the medecation now costs $3900.00 per month, Cigna will only pay 40%.The doctor said that IF if works for me that I could expect to not be so out of breath and be able to fuction a little better and not faint so much. It will not slow down the disease but only helps with the pulmonary hypertension which developed because of the disease. Even though he states I am in the "end stages" he also states that I should be more concerned with the pulmonary hypertension killing me sooner than my disease will. I have not taken or

opened the bottle of medecine yet...still deciding what to do. I will decide by tomorrow.I hate to put my life expectancy into dollar signs but it is an awfully lot of money to pay out for not much return. Thanks for listening to all of this. Holidays sure are difficult for me. I figure this is my last holiday and get to feeling sorry for myself.Thanks again __________________________________________________

[Guest guest]

I had a heart cath done on me about 4 yrs ago, found a 60% blockage in my arterys but said n ot to worry about it, ( that was before I got sick) . What scares me is that I'm one of those that "blew" the cork, when I got up to go potty, the artery blew and talk about pain. Seems like I get all the bad luck. I could barely drag myself back to bed, then started callin for the nurse, I pressed the call button, no one came, ( this is all in the course of about 2-3 minutes). I start screaming help nurse, I was about to call the operator and have her tell someone to get in here when the nurse came in. She took one look at me, peeked her head out the door and said we need help stat. When she pressed on my groin it hurt so bad, I said am I gonna die? She said no hun but I gotta stop this bleeding. They tilted my bed so my feet were in then air, my blood pressure dropped to 50/20. She asked me if I was sick to my stomach I said yes, and they had someone squeezing the IV bag, forcing fluids in me, needless to say, I spent the night in the hosp, another 6 hours flat with a sandbag on my groin. I guess I'm scared its gonna happen again or because I already have a blockage that it might give me a heart attack, I'm such a worry wart. Thank you all for your input though, I appreciate it.

Vicky81856

[Guest guest]

Vicky...sorry I can't offer any thing other than generic encouragement! I have no experience with what you post here.

I can sure understand your anxiety though. One doesn't forget those events!

I admire you so much. You have been through so much, how can you not worry? It's a human condition.

Someone once told me that if there is nothing I can do, then why worry and if there is something I can do, why worry? a little joke here.

I say that to myself and follow it up, "Yes but...."

You are always in my prayers Vicky.

God Bless. Sher

"Don't worry about tomorrow, God is already there"

Re: Trekleer

I had a heart cath done on me about 4 yrs ago, found a 60% blockage in my arterys but said n ot to worry about it, ( that was before I got sick) . What scares me is that I'm one of those that "blew" the cork, when I got up to go potty, the artery blew and talk about pain. Seems like I get all the bad luck. I could barely drag myself back to bed, then started callin for the nurse, I pressed the call button, no one came, ( this is all in the course of about 2-3 minutes). I start screaming help nurse, I was about to call the operator and have her tell someone to get in here when the nurse came in. She took one look at me, peeked her head out the door and said we need help stat. When she pressed on my groin it hurt so bad, I said am I gonna die? She said no hun but I gotta stop this bleeding. They tilted my bed so my feet were in then air, my blood pressure dropped to 50/20. She asked me if I was sick to my stomach I said yes, and they had someone squeezing the IV bag, forcing fluids in me, needless to say, I spent the night in the hosp, another 6 hours flat with a sandbag on my groin. I guess I'm scared its gonna happen again or because I already have a blockage that it might give me a heart attack, I'm such a worry wart. Thank you all for your input though, I appreciate it.

Vicky81856