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tngrits

Update on heart cath

14 posts in this topic

Well, I had my heart cath (left and right side). They also tried medicine on my lungs at the same time. I definitely have stage 4 pulmonary hypertension. The medicine did not help at all. The cardiologist said he knew of nothing to help me. My pulmonologist says he can hopefully give me more time and a little better quality than I have now. I don't know the name of the medicine but it is given through a needle under the skin in the stomach area I believe. I understand it is very expensive so thank goodness for insurance. Is anybody else on this and if so has it helped? I am kind of scared about the process and side effects. Right now I am learning to take one day at a time and enjoy as much as I can laying in this bed--lol.

tngrits

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Well, rats. That's not good news.

I'm a great one for grasping at straws, so do you know if the cardiologist who said he knew of nothing to help you is a pulmonary hypertension specialist? It's usually a 'plain' cardiologist who does the heart catheterizations, but a PH specialist who determines treatment. If you aren't seeing one, I'd definitely recommend you try and at least get a consult.

Might the medication be bosentan? Or maybe prostacyclin? We do have information on the various treatments for PH here including the two I've mentioned. I can't offer personal experience - I am on ambrisentan, an oral endothelin A antagonist. Yes, they are expensive. Ambrisentan, if paid out-of-pocket, is $6,000 a month. I'm with you, thank goodness for insurance. It does seem that when a PH medication kicks in, you will notice an improvement. I certainly did.

I hope the medication does help. I'm sending a :emoticon-hug: and some :spoon: :spoon: :spoon:'s. They're a really pretty silver pattern and I've shined them up! Please post often, even if it is only about what you are reading. We're here for you.

Warmest wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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I am saddened to read this. Is there any chance for a transplant? I know that a couple of our cyber friends have been through that, but not sure if any were for a lung transplant. I will keep you in my thoughts.

 

Take care, Everyone.

Margaret

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Hi Linda,

 

I'm very sorry to read your news.

 

Thankfully I don't suffer with PH so can't advise you from my own experience, but I'm hoping that the medicine that's been suggested to you is successful and improves things for you.

 

In the meantime I'm also sending you a supportive :emoticon-hug: and a couple more :spoon: :spoon: (shiny variety like Jeannie's, of course!! ;) :lol: )


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello tngrits!

 

I've been thinking about you and I hope the proposed injection gives you positive results!

 

Chopper


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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Jeannie - Yes, I am seeing a good pulmonologist who has dealt with scleroderma a lot. I wish I could remember the name of the medicine but believe it starts with a "r" and costs $150,000 a year. They said yesterday it will take a couple weeks to get approval from my insurance company.

 

My insurance company would never go for the transplant and I am so far along I just don't think they would do it anyway. I'm hoping the medicine helps me some. Thank you all for being here. It is the one place you can go and say you're scared and everybody understands.

 

Love to all,

 

tngrits

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I am sorry for your news!! I agree with Jeannie, I would keep seeking out the best PH Specialist that you can find. I have to agree thank goodness for insurance. Please keep us posted and know that we are all sending you healing thoughts.

 

Marsha

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Hello Tngrits

Last year I had class 3 limited heart failure, there were 4 classes, how many stages of PH are there? Please say at least 6?

Is the drug rituximab? My dear friend, who has pulmonary hypertension as well as severe, complete gastrointestinal involvement has just had one rituximab infusion.

I am so sorry you are so poorly, is a heart and lung transplant an option or anything else for that matter?

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda,

 

That just might be the drug I'm talking about. They said it was $150,000 a year. I am just hoping my insurance covers it. Yes, there are also four stages of PH and I'm severe. I have not given a transplant much thought. I just don't see that happening. Thank you all for thinking of me.

 

tngrits

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tngrits,

So sorry to read what you are having to deal with by having this nasty disease! Like Jeannie I'm on Bosentan. It is an oral drug used to treat class 2, 3, and 4 PAH and seems to be working quite well so far. I did a little internet search and it sounds like the meds you are taking might be Remodulin? It says that it can be taken subcutaneous as well as intravenous. Whatever the med is I hope it helps you to get better.

My recommendation is - since you're being held captive for the time being - find some good books and catch up on your reading. I find a good book a great escape.

We're always here for you.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Janey - I think that is the drug. They haven't come out here with it yet so that is why I don't remember. I sure hope it helps me. Reading is a good idea. I haven't taken time to do that in a long while. Everyone is so helpful here.

 

tngrits

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Hah! Do we have book recommendations for you! Go to: BEST READS EVER IN THE WHOLE WIDE WORLD

 

And, if you Have Trouble Holding Up Books, this topic has loads of good suggestions, also how to make books more accessible to you. Worth a read. :)


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Tngrits

 

I too am sorry to hear your news. I hope you receive the approval/medication soon and that it helps you improve quickly! Keep us posted.


Sending good wishes your way!

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Tngrits,

 

I'm so so sorry for your diagnosis. I have no idea what my PH level of involvement is, just know I make the best of everyday. They have, however, mentioned transplant, and have visited withthe transplant doctor in Seattle, and I have to lose 70 lbs. Down -25. Slow slow slow...but trying nonetheless! If there is anything I can do to help with support, .let me know.

 

HUGS HUGS HUGS!!!

:emoticon-hug: :emoticon-hug: :emoticon-hug:

 

susieq40

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