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Old 05-17-2012, 09:17 PM   #1
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Smile Yearly update...

I just wanted to share information about the annual visit I had today with my Pulmonologist. He spent almost an hour with me and it was a healthy visit.

A bit of history for those of you who don't know me: I was officially diagnosed with asthma in 2002. Gradually over the years, it got worse. In January 2008, I was on multiple asthma meds and still ended up needing emergency treatment during an incident where I almost stopped breathing. I have frequently gone months with flares where I had a chronic harsh dry cough and breathing problems that I couldn't get under control despite "doing everything right." It was at that point that I started seeing my Pulmonologist.

Today, my lungs sound good and I'm off of all of my asthma medications. My Pulmonologist told me I'm his greatest success story in his career. He actually told me that I was in really bad shape when I first came to him and he really wasn't sure he could help me. (Glad he didn't tell me that then.) He said most of the time his diagnoses are pretty straight forward. In my case, he said there was so much going on it was hard to identify and to figure out how to treat it.

During the visit, he did a thorough health history to learn about the last year of my life and where I'm out now, for all areas of my health. (Have I been on antibiotics in the last year, what meds am I on, frequency of albuterol use, peak flow readings when I'm normal and when I'm having problems, still wearing my sleep splint, treatments from my other docs, etc...?) He reviewed through my lab results (bloodwork and PFT's). He updated my asthma action plan. He actually made sure I had my Epi-pen and Albuterol with me and that I carried them regularly. He did a physical check of my lungs, ears, mouth, etc...

He actually told me I was an ideal "smart" patient and commended me several times. Some of the things he told me I did right through my treatment process:
  1. I didn't give up and kept seeking answers until I found them.
  2. I am knowledgeable about my conditions, what treatments have been tried, how long they were, the steps I went through, what did and didn't help, what tests I'd had and what the results were, any changes that had taken place both good and bad, etc...
  3. I can speak on my own health and I ask lots of questions.
  4. I advocate for myself!!! (This I found extremely hard at times when I was so incredibly worn down.)
  5. I recognize how I'm doing and followed my asthma action plan.
  6. I coordinated my own care. In the case of getting my asthma under control, I worked with the Pulmonologist, an ENT/Allergist, a Gastroenterologist, and my Primary Care Physician.
  7. I didn't settle for answers I didn't feel good about. (Worth repeating!) It was great to actually hear a physician tell me it was RIGHT to question things, even if I was questioning him.
  8. I wasn't like the majority of his patients. I pay attention to my body and what it is telling me and I can verbalize when I have concerns.

Unless something else comes up, I get to go a year before returning.

I didn't post this to "toot my own horn". I posted this because I found the information he told me about what I had done right very important to share. With asthma it can be very frustrating at times because there isn't always an easy answer. It is hard to keep seeking answers when you become both physically and mentally worn down. If you have bad asthma, keep the faith!!!! Follow your asthma action plans!!! Advocate for yourself until you find the answers that are right for you.!!!

Thanks for listening. I wish all of you well.
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Asthma, Allergies, severe LPR/GERD, TMJD, Hearing Loss, Ulnar Impaction Syndrome, Shoulder Impingement, Plantar Fasciitis, DeQuervains, Hypermobility, possible Ehlers Danlos Syndrome

 
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Old 05-18-2012, 07:45 AM   #2
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Re: Yearly update....

Thank you for sharing and congratulations on your success!

 
Old 05-18-2012, 05:30 PM   #3
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Re: Yearly update....

Congrats on your success! I noticed that you also have severe GERD. Did you know that acid reflux can actually cause uncontrollable asthma? Have you ever gotten tested for sleep apnea? Sleep apnea can cause GERD which can cause asthma, it's a vicious cycle

 
Old 05-18-2012, 05:59 PM   #4
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Re: Yearly update....

Hi phoebe,

Good questions.

I have environmentally and allergic triggered asthma, but part of the challenge in getting my asthma under control was learning that I had gaseous reflux which I was aspirating and which was causing general lung irritation and triggering my asthma. When intense reflux treatments stopped working I ended up having a Nissen Fundoplication to get things under control. It was actually my Pulmonologist who did the modified barium swallow & esophagram to confirm that. I've also had 3 pH tests, 2 Manometries and 3 egd's as well through my other specialists. I'm pretty much on high dosage PPI's for life because of that gaseous acid problem.

I did have a sleep study. It came back normal, but I was wearing a sleep splint that keeps my lower jaw forward, from my TMJD treatment, so that may have made a difference. My Pulmonologist is also a sleep specialist. My orthodontic tmjd specialist also practices sleep dentistry as well. Coordination of all of this is part of what I was referring to when I spoke of coordinating my care.

Over the years, I made a point of not eating for a couple hours before bed and sleeping with my headboard raised 6 inches to help with the reflux as well.

Allergies also factored into my asthma flare and I was receiving intense treatment on that side as well.

I was well entrenched in that "viscious cycle" for years and receiving heavy treatment my multiple specialists before finally breaking it.
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Asthma, Allergies, severe LPR/GERD, TMJD, Hearing Loss, Ulnar Impaction Syndrome, Shoulder Impingement, Plantar Fasciitis, DeQuervains, Hypermobility, possible Ehlers Danlos Syndrome

Last edited by MountainReader; 05-19-2012 at 11:22 AM.

 
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Old 05-19-2012, 07:41 AM   #5
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Re: Yearly update....

Way to go MountainReader! I'm so happy for you! Thank you for sharing! It was so helpful to read that it can get better and the importance of being an advocate for one's own treatment! I really do need to develop an asthma action plan since I have never really had one. I hope to be able to get where you are! Thanks again!

 
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