Huff n Puff Forums

Joined: 17 Jul 2010 Posts: 21 Location: Memphis, TN.

Whew! That is so much more "do-able" for us! I'll work on getting over there ASAP. Thanks again for the advice Strayze!
>M

Joined: 19 Jan 2005 Posts: 606 Location: Elberton, GA

Emory in Atlanta has an outstanding Interstitial Lung Disease Center, too. Many people fly there to use them. It is another option. They saved my life and dx. my rare medical problems.

Joined: 17 Jul 2010 Posts: 21 Location: Memphis, TN.

Hello again everybody. Yesterday, I went to appt. with pulmo that treated me on my last hospital stay. He's the one that ordered mediastinoscopy and open lung biopsy. He's also the one that started me on 60 mg Prednisone daily when I was discharged on 7/2. Anyway, he did a new breathing test on me and said that I did better this time than I did pre- surgery and he also said that my new x-rays looked better than the ones they took in the hospital and that we should continue on present course. He reduced Prednisone to 40mg. a day and said to come back in three months. I guess I should consider this good news but I can't say that I am looking forward to being on the Pred for another three months. Anyway, I am not experiencing too many side effects, yet. I do have some swelling in my ankles but the Furosemide seems to help. I would be doing better with the swelling but I just don't lay down with my feet elevated as much as I should. I am also having to use a lot of Insulin to offset Pred but, my GP (I saw him on Wed 8/4) told me, after checking my A1C levels and kidney/ liver functions, that everything looked good and he said I should stay the course. I was wondering if taking 40 mg. a day for another three months sounds like a lot to you guys? It sounds like a lot to me. Anyway any input is welcome. Thanks Again!!
>M

Joined: 20 Apr 2009 Posts: 127

Great News, M! Was he able to tell you what type of ILD he thought you have? An improvement in pft's is great and means that the prednisone may be helping. If you are able to control your diabetes with medication still, then I think a few more months on a moderately high dose is probably o.k. assuming things stay status quo otherwise.

Joined: 17 Jul 2010 Posts: 21 Location: Memphis, TN.

Thanks Solairia! Another pulmo that I went to last week told me that I had Non specific Interstitial Pneumonitis. This pulmo, like I said, the one that ordered the media stineoscopy and open lung biopsy in the hospital and the one that I actually have more confidence in, told me I have Chronic Interstitial Pneumonitis. I'm not sure what the difference is, or which is the kinder diagnosis, but at any rate, I'm going to keep on the pred and keep an eye on the blood sugar and see what happens! Wish me luck!!

Joined: 20 Apr 2009 Posts: 127

There is not one called "chronic interstitial pneumonitis" per se, but maybe he didn't think you'd know the difference and didn't want to get into a long discussion about it. That would be a red flag, unless he wants to admit he's not sure still what you have. NSIP has it's little bit of controversy anyway, so who knows where he's coming from. The difference is in treatment, sort of. Some would say if it's IPF, don't bother with predninsone, others still would. For NSIP I think prednisone and other immune suppressants should be tried. Sometimes biopsies don't always yeild clear results for various reasons. The good news is that it appears prednisone is working for you! But you do want a doc that will communicate to a level as in depth as is comfortable for you. If you want more information and they keep being very vague such as the response above, then it's time to push them to be more specific or to get a new doc who will be more forthcoming.

Joined: 12 Jan 2010 Posts: 558 Location: Michigan

That was a new one to me also " chronic ". I'm wondering if your Dr means UIP in which case is IPF not NSIP. I think there's to many kinds out there to begin with. I think you need to question your Dr about what he's calling this. Hang in there it gets confusing! Mary J.

Joined: 17 Jul 2010 Posts: 21 Location: Memphis, TN.

Thanks guys. I think, for right now, since I'm feeling better, I'm going to continue on with pred and see what happens in the next few weeks. Between what I've gone through personally and what I've had to deal with re: my mom's health..... Right now, I'm just realllllllyyyy sick and tired of Dr.s and hospitals. I just want to try to stay away from them all as long as I can. I'll keep you posted.

Thanks
>M

Joined: 17 Jul 2010 Posts: 21 Location: Memphis, TN.

Hi folks, just a follow-up... I haven't been feeling real great lately... I'm a little depressed... I don't have much energy... from very little activity I get pretty SOB, pretty fast... pretty much on 3.5 lpm o2, 24/7.... still on 40mg pred daily... trying to hold off going back to Dr. as long as I can... I just wish this would go away... I miss being active... I'm a little scared too.

Joined: 08 Mar 2006 Posts: 374 Location: NJ

Just wanted to leet you know that we care and want you to start rebounding. Wonder if you might benefit by getting a prescription to attend pulmonary rehab? If it's associated with a hospital it may get you some more attention and the therapist will assess you carefully. Is that possible?

Joined: 02 Oct 2005 Posts: 248 Location: Arizona

Dear Macon,

It is quite an adjustment to develop a serious illness. Finding a medical system that can give you time especially when you are so new to this is really necessary to give you the support you need to get some stability in your life. I would give the nurse a call at the office you are using and ask her to help you to navigate through their health center.

Later you will have a little more knowledge and confidence about what you should do. If this center can not spend time with you then you need to find another place. All of this is too much for you to carry it on yourself.

Are there any other HnP people in your area? You could use a friend who has been dealing with this longer.

National Jewish really took a lot of pressure off of us when my husband got his diagnosis and treating Pulmonary Fibrosis is what they love to do. If you can not find this support in town(we could not in our town) then rethink your option of going to Vanderbuilt. You are very young and will be really desirable for a transplant. Many here are not elegible for a lot of reasons.

I am here for you.

Mouser

Joined: 17 Jul 2010 Posts: 21 Location: Memphis, TN.

Thanks for the replys. I have come to believe that I am going to have to get to Vandy or some other facility that specializes in ILD's to get the "correct answers" to what my situation is. The problem is... right now we just can't afford that trip. My wife has used up all of her sick/ vacation days for the year due to my three hospital stays. She has been FMLA approved so she could miss work and not get paid, however, we are barely keeping our head above water now with regular monthly bills and the new Dr./ hosp/ script bills. I have applied for Disability and SSI and hope to be getting some help from that someday, but if/when that happens it won't be any time soon. I'm just trying to remain as pos as I can but I'm finding that very hard to do lately. I can't tell you how much I appreciate all the good advice you folks have offered. I also really do appreciate any prayers you might be inclined to send my way! I pray for us all too...

God bless and heal us all!!
>M

Joined: 02 Oct 2005 Posts: 248 Location: Arizona

Dear Macon,

The large teaching centers that specialize in rare diseases get government grants to do research. Why not call NJH in Denver and Vanderbuilt and see if you qualify for any of their studies. My husband qualified for the genetic study that NJH is doing. It was started at Duke. My husband pays nothing except Medicare and AArp. It is worth a try.

Otherwise bloom where you are planted and try to work with what you have. If you get a transplant they will require a weight reduction. Do what you can to prepare for the opportunity that surely will come your way.

You are smart to seek out this site. These are the most caring and informed people I know.

Mouser