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Support for people with interstitial lung disease
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MidwestLizabeth



Joined: 28 Aug 2013
Posts: 6
Location: USA

Post Posted: Wed Jan 14, 2015 3:34 pm Reply with quote    Back to top    

Wanted to post something to keep this forum going. It's meant so much to us over the past couple of years.
We're waiting to hear back from Barnes Jewish to go see if hubby's eligible for a transplant.
Anyone that's had to move to the St Louis area, we like to learn where you stayed and what kind of experience that you had at Barnes.
I don't check in often, but there's so much good information on this site, it needs to be kept alive.
Live one day at a time!
Liz


Last edited by MidwestLizabeth on Tue Jan 20, 2015 3:13 pm; edited 1 time in total
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'Tis Maggie



Joined: 20 Jan 2012
Posts: 365
Location: Bellefonte, Pennsylvania

Post Posted: Wed Jan 14, 2015 10:50 pm Reply with quote    Back to top    

I wish all the best to you and your husband! I hope things move right along for you and that the wait will be a short one. A very good friend of mine will be celebrating her 13th anniversary of her double lung transplant this summer. I hope you keep posting updates as the process moves along.

I really agree with keeping this panel going! I wish more people felt comfortable enough to leave posts. It took me quite a while before I moved from just reading to actually posting.

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Maggie
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MidwestLizabeth



Joined: 28 Aug 2013
Posts: 6
Location: USA

Post Posted: Tue Jan 20, 2015 3:39 pm Reply with quote    Back to top    

Maggie:
Thank you! And, it good to know that you're friend is going on 13 years post-transplant. We should know next month if hubby's is eligible.
If so, we will have many questions.
He's been on 02 at night for 1 1/2 years and they just ordered him O2 for daytime use when he's active. He has pulmonary hypertension from the struggles to breathe with the IPF. So far he's able to do most things that he enjoys and he maintains a positive attitude.
The IPF is aggressive and the new drugs aren't helping much. He got into one of the drug trials last year, and we're in the process of transitioning over from the trial to the new co-pay. . .whenever they get the fees figured out.
I hope you are doing well.
This website provided so much information to us on such a rotten, stinking, little known disease. Without it, we would have probably stuck with a so-so doctor and not be to the point we are now. We followed the advise of those that went before and it really helped us. We just live one day at a time.
Liz
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'Tis Maggie



Joined: 20 Jan 2012
Posts: 365
Location: Bellefonte, Pennsylvania

Post Posted: Tue Jan 20, 2015 9:58 pm Reply with quote    Back to top    

Out of curiosity, is your husband also seeing a Pulmonary Hypertension specialist? If not, he really needs to see one. If you go to the Pulmonary Hypertension Association's website, they list specialists state by state. While the medications for PH has no affect on your husband's PF, they can make a significant difference in how he feels.
I found out I had PH when I was being worked up for a lung transplant. I was put on Tracleer, which helps to prevent the PH from worsening and Revatio, which made it so much easier to breathe because it dilates the aorta, making it easier for my heart to pump blood into my lungs. It really gave me energy and made me feel like a human being again. PH is always progressive, while PF seems to hit bumps in the road. But there are many medications to treat PH. You might want to look at the PHA's website - lots of information and a very good forum. I'm just a reader there, not a poster. I talk too much! Smile

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Maggie
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MidwestLizabeth



Joined: 28 Aug 2013
Posts: 6
Location: USA

Post Posted: Wed Feb 04, 2015 11:07 am Reply with quote    Back to top    

Maggie:

No, not at this point in time. Thank you!

We'll look into this and find him a good Dr for the PH. Having information from others that have been down this road is so appreciated. He's so tired and when he does exercise, his heart rate jumps up as his 02 drops. So far, recover time is quick.

What is so nice about this forum is that you can describe the meds and what works and what doesn't work for you/loved one. Each individual faces different challenges.

There are some forums where they specifically prohibit discussions of the meds. Dr's aren't perfect. Even though we have a good Dr, we still have to sometimes "nag" to get the equipment we need, or demand the tests so that they can document the need for the equipment.

IPFers & their caregivers must be proactive and do the best they can to monitor O2 on a regular basis and anticipate the declines. It took us 6, count them, 6 weeks to get the portable unit. Grrrrr! But, now we have more freedom to do the things that we can still do.

Thanks again!

Liz
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'Tis Maggie



Joined: 20 Jan 2012
Posts: 365
Location: Bellefonte, Pennsylvania

Post Posted: Fri Feb 06, 2015 7:51 pm Reply with quote    Back to top    

I recently took a survey that dealt with living with pulmonary fibrosis. When they asked what source I considered to be the best source of information when it came to daily life, I told them forums such as this. I've gotten so much useful information from people who are walking in the same shoes I walk every day.

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Maggie
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MidwestLizabeth



Joined: 28 Aug 2013
Posts: 6
Location: USA

Post Posted: Tue Feb 17, 2015 9:31 am Reply with quote    Back to top    

Maggie:
Good news is that hubby is still too "healthy" to be listed. We learned a great deal. Need to work on loosing weight. . .prednisone. . . has not helped. He's done most of the tests and our Dr & transplant Dr's at Barnes know & respect one another, so we'll hope for another "good" year. We spent a couple of hours going over different things that have changed over time. Again, thanks for all of your suggestions, they mean a great deal.
Hang in there!
Liz
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'Tis Maggie



Joined: 20 Jan 2012
Posts: 365
Location: Bellefonte, Pennsylvania

Post Posted: Tue Feb 17, 2015 9:21 pm Reply with quote    Back to top    

That's what I was - too healthy for a transplant. They kept me on the list as inactive but after so many years, I couldn't deal with the testing anymore. My doctor there told me until I said, "Doctor, I can't live like this. I'd rather be dead than live like this." I was not ready for one.
If you'll forgive me for repeating myself, I do want to remind you that PH is progressive but there are many drugs for it now. Since PH and PF have the same symptoms for the most part. I found once I started some medications for it, (I take Tracleer and Revatio) I was breathing easier, had more endurance and wasn't half asleep most of the time. They really raised my quality of life. The Pulmonary Hypertension Association have a wonderful web site and it's really worth looking at. It even lists the doctors by state who are true specialists.
Good luck!

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