cindi o'h Posted December 15, 2004 Share Posted December 15, 2004 Hi friends, I am going to try to report my experience with the new pulmonologist. I waited for this app't for a long time. My old pulmonologist ordered PFT's every 3 months and listened to my lung and Rx refilled scripts. Ordered a chest Xray every once in a while. The results of which I never saw. He did save my butt when I developed radiation pneumonitis and put me on steroids short burst. THIS new pulmonologist had already reviewed my scans and Xrays by the time she introduced her little, young self. She asked lots of questions and listened for the answers and made chicken scratches on a blank piece of paper. She painted a picture to me in words what may be going on with my lung. She said that there has been constant inflammation in there from the radiation treatment she highly suspects. The inflammation has caused a great deal of scarring or fibrosis. The damage is irreversible. The scar tissue is thick. She said that it is in a place where there is vascularity from my heart and that she suspects that the blood supply is being strangeled by the scar tissue. She said she highly suspects that the right side of my diaphram is paralyzed as it sits high and squishes my right lung. She said that she wants me in pulmonary rehab. She wants arterial blood gasses. She wants a "sniff" test to check on that diaphram. Another PFT. A sleep study. And she put me back on 40 mg prednisone for at least 3 more weeks. She explained that she is hoping that they will knock out the inflammation and subsequent scarring once and for all. I need to go for it. I cannot afford to lose anymore lung function. I have been so short of breath. I have lots of tests coming up. And hopefully, some answers. I have a wonderful feeling about this doctor. She is going to HELP me. And I walked away (breathlessly, I might add) with Hope that I will get better and be able to move better. So, this is what a good pulmonologist looks like.....hmmmm. Remember when I was wondering and jealous of y'all's? She may just up ending to save my life. ....that's a good thing. I probably left something out here. but oh well. love Cindi. Quote Link to comment Share on other sites More sharing options...
SDianneB Posted December 15, 2004 Share Posted December 15, 2004 Cindi, that's wonderful. Dontcha love having that feeling of confidence? I sure do. And I wouldn't take a thing for the experience I've had with the Pulmonologist I see. They are lung experts -- for cancer, or any type of chronic pulmonary disease. I suspect oncologists are just there for the cancer, and may not be as up on other things that can be going on -- separate from or simultaneously with the cancer. I think the best is when you have a pulmonologist who works with the oncologist. When they are communicating, I think your chances of successful treatment go WAY up. That's just my 2 cents worth, but it's been my experience that having the pulmonologist to rely on has been invaluable. He also explains things to me in a way that I can understand. I'm so glad you have found a good one! Di Quote Link to comment Share on other sites More sharing options...
Wendy Posted December 15, 2004 Share Posted December 15, 2004 Cindi, Wonderful news!! It is so exciting that you like the doctor and she is paying close attention to all of the symptoms and looking further. I really think that that is half the battle. I don't envy your test schedule but along with the tests may come some answers - definetly worth the efforts. You will have to let me know how the pulmonary rehab goes. A friend of mine just went through it and her breathing improved considerably. Take care and keep us posted, Wendy Quote Link to comment Share on other sites More sharing options...
Herman Posted December 15, 2004 Share Posted December 15, 2004 Cindi o'h - just thought I would send you some WARM wishes from SUNNY 71 degree Tucson, Arizona! I can't imagine what it's like to live in constant cold, as I have lived all 41 years of my life here in Tucson! I also want to thank you for your daily updates, and your positve attitude. I think a lot of us really needed that today! I hope the rest of your treatments go as well as the previous ones! Sending some "warm sunshine" your way! Quote Link to comment Share on other sites More sharing options...
TAnn Posted December 15, 2004 Share Posted December 15, 2004 Cindi, I am so happy to hear that you like your new pulmonologist. I know the tests are not going to be fun, but you have the right attitude and are willing to do the work in order to get better! I know you are breathing a sigh of relief right now that she pays so much attention to all the details. Isn't it amazing how our attitude can change with the right docs and support around us? Let us know how everything turns out. I'll be thinking about you. TAnn Quote Link to comment Share on other sites More sharing options...
Justakid Posted December 15, 2004 Share Posted December 15, 2004 Cindi - It's darn cold here....I'm sure drinking a slurpee is NOT helping to keep me warm either! Glad this doctor can fix you! I hated my sleep study, hard to sleep when someone is watching you Yeah for the new doc Quote Link to comment Share on other sites More sharing options...
Ry Posted December 15, 2004 Share Posted December 15, 2004 Wow! She sounds like she is really giving you the works... I am so glad you found her. Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted December 15, 2004 Share Posted December 15, 2004 Cindi, Glad things are going in the right direction for you! Rich Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted December 15, 2004 Share Posted December 15, 2004 Glad you found someone you like and are comfortable with.That is such an important & often times elusive factor. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted December 15, 2004 Share Posted December 15, 2004 Cindi, Sure am glad you explained the "snarls"... lol. I was wondering why someone so sweet, compassionate and kind, as yourself, would be seeing yourself with such a snarling face. Steroids... aha!!! Now , I understand. Mike is on 10 mg of prednisone daily and that's not too bad. His pulmonologist keeps him on that level to protect against pneumonitis, as well as, to keep down inflamation and aid breathing. I'm glad to hear that you have confidence in your new pulmonologist. We sure love ours. I say ours because I have early emphysema. Anyway, we make sure he gets copies of all CT scan reports ordered by oncology. Mike has regular visits with him (now it's only every 3 months, unless needed) and on each visit he does a new kind of test. He recently got in new equipment that you can breath into a tube normally and it actually draws a picture that shows where there is obstruction. I'm sure I'm not explaining that well , but my point is that a good pulmonologist can be testing your lung function and if symptoms warrant they can perform many kinds of tests. The oncologists job seems to be more focused on treatment and dealing with side effects of chemo. Both docs have their very important place to aid in the care of lung cancer patients. Sure hope yours can give you some answers and better yet offer you some cures for your problems. Take care Cindi... I love reading your posts to others. You are so kind and supportive... God Bless sue Quote Link to comment Share on other sites More sharing options...
DonnaB Posted December 15, 2004 Share Posted December 15, 2004 Cindi, Sounds like you have good reasons to be liking this doctor. Keep up your positive attitude; I love your spirit. BTW, it's 79 degrees here, low tonight will be around 53 degrees . Come on over anytime and warm up! DonnaB Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted December 15, 2004 Share Posted December 15, 2004 hi Cindi, I am glad you found a good pulmonist who is responsive. I found the pulmonary rehab to be great, but you have to keep it up at home, like physical therapy. Mine thought my reactive airway problem -- he didn't give it a name -- was due to radiation, and I guess he didn't think it would change, but I want you to know over the first two years it got remarkably better, to where I no longer jump on the steroids so I can breathe when a cold or other bug comes my way. I actually survived colds this year without medical intervention, in a reasonable amount of time! Slight but steady improvement.... I know what you mean about steroids. I would go a long way to avoid them right now, but if I had to, I had to. I remember being unable to cross a room without stopping to catch my breath, or being unable to speak in long sentences. NOT FUN!! Glad you explained the Growly. Now I know, and fully sympathize. Good luck on your tests!! and glad you found THE pulmonist for you! XOXOOXOX Prayers always, MaryAnn Quote Link to comment Share on other sites More sharing options...
Don Wood Posted December 15, 2004 Share Posted December 15, 2004 Cindi, so glad you've got a good connection there now. Rnjoy the holidays. Don Quote Link to comment Share on other sites More sharing options...
J.C. Posted December 16, 2004 Share Posted December 16, 2004 Cindi, That is good news, Will you change the avatar now???? or wait after you finish the Prednisone? been on it since 2001, and all I do is smile, or try. Keep us posted for all the results of the tests and the rehab for progress. xoxo J.C. Quote Link to comment Share on other sites More sharing options...
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