Latest CT Scan Results

[Alysia]

Oh yes, I forgot to add that a respiratory therapist is going to come to my house once a day/six days a week to do a percussion treatment to try and break the stuff loose. My guess is this all has to be done prior to any invasive type procedures being done. Just a guess.

sounds good please tell Phil about all of this, it might help him as well....

[me2]

That sounds good Cindy. I don't have any experience with what you are dealing with but I do know that often people further down the chain of command from doctors are more help and have better ideas than the doctor does. I'm hoping the therapist can really help you and give you some relief.

[Beverly]

You certainly have my prayer support, Cindy. I am encouraged about the rtx treatment and glad you will have therapist coming to you
Lots of hugs for you

[LisaT]

Let us know how it goes... I am very hopeful that you're going to get some relief and feel better.

Did I mention serrapeptase to you? It's a supplement my Bowen therapist told me about because it can apparently rid us of 'tissue' we don't need or want. I think FM is active or live tissue rather than 'prior granulomatous disease' which is what they think my thing in my chest is, but maybe worth looking into regardless? I think a naturopath and/or pharmacist might be able to give you some info. I know there's so much going on right now... Just something to think about adding to the mix at some point if it sounds right to you.

[pberggren1]

All of us can benefit from consulting a naturopath.

[BookNut]

Cindy, We have been away for a few days, but I check my email now and again. This is a challenging diagnosis that is for sure....bit it sounds from this post and another you posted a little later that you will finally be getting the treatment that you need. I have heard of the vibrating vest. I know they are finding that there are more people than ever believed possible who are developing adult onset cystic fibrosis. The vests are a common treatment for CF and other disorders that result in a build up in mucous in the lungs. What is the other vibrating thingy you refer to. I have a flutter valve. Is that what you mean? Anyway, I am most happy to see some action going on in your medical treatment. My husband used to have the percussion treatment frequently during his hospital visits many years ago. It took a long time, and much trial and error with his medications, but his asthma is in much better control now. I will look forward to seeing reports of how you are getting on. Thanks for keeping us up to date!

[windchime]

Had the treatment with the respiratory therapist today. She said it make take a couple of weeks to get stuff to start coming up. I thinking all this pounding on my back might be good for those muscles that hurt...just a hopeful thought.

Jacquie it may be a flutter valve. You blow into it and it vibrates the bronchs somehow. I'm not familiar with it. She the RT isn't impressed with the vest as it apparently doesn't vibrate enough for her.

Lisa I might try a naturopath when I get done with all my travels this summer. I have 3 trips plus my mom is coming to visit. so July, Aug and early Sept are kind of booked. And I have to keep up with existing appointments. I also have to find one. Any idea on how to find one? I'll check out the supplement after all what's another pill? Lol.

[pberggren1]

I just looked in the yellow pages and found my naturopath.

I have tried the flutter valve a few times again recently but find it is too hard for me to use. I try it first thing when I get up but my breathing is much too poor to do it. I try it after I get everything coughed up but then there is nothing to come up pretty much so mostly pointless to use it.

I am going to ask my lung doc and RT about the vest thing.

[Alysia]

I have tried the flutter valve a few times again recently but find it is too hard for me to use. I try it first thing when I get up but my breathing is much too poor to do it. I try it after I get everything coughed up but then there is nothing to come up pretty much so mostly pointless to use it.

maybe try it in between ?

[windchime]

OK it's time for an update and what has been going on this summer. In other words, "What I did on my summer vacation."

Made the trip to Nashville via Atlanta, towing my cousin along. Saw Dr. Loyd at Vanderbilt. Very nice man. I have a very "complex and complicated" case. Does anyone ever want to hear this? After talking to me and reviewing my med files, he wanted to consult with some peers and get back to me, however he did say that it appears I had a wrong diagnosis back in 72-73 and I actually had Fibrosing Mediastinitis then and not Wegs. I did have a very positive test for histoplasmosis back then so that does make sense. He repeated my ANCA which of course was still negative. Imagine that.

In the meantime, I changed local pulmonary docs and love my new one, who isn't afraid to consult with Dr. Loyd. In fact, he's actually deferred to his decisions.

I went on vacation to New Mexico for two weeks to see my mom for her 84th birthday. She was of course thrilled. In the 12 years of so I've been visiting NM it's never rained. We had a raging rain storm or two while I was there. We were actually out in the car during one. All their streets are designated arroyos which means they are like rivers when it rains. Well, I survived the trip to and fro.

When I got back I had to do a lung perfusion and ventilation scan or VQ scan. It shows how well your lungs are using air and where the blood supply is. Not much going on in the right lung. No news there since the lower two lobes are collapsed.

Had a conversation with Dr. Loyd and he was recommending that I have a bi-lobectomy. Since surgery for this disease is almost always contraindicated I of course wanted to know why he was recommending it. He said of the 300 patients he's seen over the years with this disease he's only recommended to one other patient, who had a successful lobectomy. He wanted me to see Dr. Pierkert at Mayo in Rochester and said they would be the best place to have surgery.

I thought on this, mainly because I really don't feel good about this surgery. My local pulmy referred me to a local surgeon just so I could talk to him about what all this entails. He said that the risks involved in this type of surgery far outweigh any benefits that may be achieved. The chances of getting post obstructive pneumonia are slim since the bronchs are 100% closed and nothing can get in there to cause an infection. From what I gather that was one of the main concerns going forward. He did say, however, if I decided to have the surgery that I should go to Mayo as they are best equipped for it. It was refreshing to talk to a doc that didn't want to jump in and rip my chest open. He also left his ego at the doc, liked that too.

So right now, no surgery, whoo hoo. I have another CT (every 6 months) in late Sepember. I don't expect much change since this normally progresses slowly except when irritated and annoyed like when I had the bronch. I'm still on O2 and will continue with it as my pulse ox drops too low and I'm still struggling with the shortness of breath. Other than that I feel pretty good most of the time. Have to watch the spoons though as I tire easily. Getting ready to head to Seattle to visit with some old friends. My mom then comes to visit when I get back so she can see the greats and her sisters in So Fl.

So how did I do on my summer vacation? I thought it was very productive. A lot of traveling for me, some necessary some strictly for fun.

I keep up with all of you on the forum even though I don't reply as often any more. You're still my family. This is the BEST forum around.

Lots of love and light to you all.

PS. Lisa and Anne hope to see you and anyone else that can make it in September.