Someone asked me what I would recommend to someone recently diagnosed with Hypersensitivity Pneumonitis? My first response was to seek out an ILD Clinic immediately. This is not a disease to be treated lightly by a local doctor. It needs a specialist.
After being diagnosed, the pulmonary function tests performed, a CT Scan had been done to see if there was any broken glass (beginnings of fibrosis) so now is the time to review a list of suspected antigens and honestly look at the work and home environments to remove the suspected antigen.
At this point, if the patient is removed from the antigen soon enough, the lungs will heal.
If there is damage to the lungs, we go to the next stage of testing. I have discovered and every single person in our ILD Support Group has GERD (gastroesophageal reflux disease), so that would be next on my list. If the microaspirations flow into the lungs, especially at night, this can cause flairs and infections in the lungs. To combat GERD, simple drugs are prescribed along with sleeping on a foam wedge or the head of the bed on blocks or, for the worse cases like mine, there is a surgery called a Nissan Fundoplication.
An exercise test is next. Exercise will improve the quality of life of HP patients but my doctor wanted to be sure I was both strong and well enough to exercise. She also discovered that I needed supplemental oxygen during this test.
A sleep test. Ah, sleep. ILDs like HP affect people in their early 50s and older. Some may already have undiagnosed sleep apnea. It is important to check to see if an ILD patient has sleep apnea or if the oxygen saturation drops below 92 at night. I did not have sleep apnea but I did and still need supplemental oxygen at night.
Join a pulmonary rehab class immediately. Now. Supervised. Downturns are often discovered first during rehab. It also provides both social and emotional support, which is so important.
Eat well. Fresh vegetables and lean protein to help the pancreas to function with prednisone on board. No junk. No processed foods.
PFT Numbers and Medications. Follow the adjusted DLCO and the FVC (Forced Vital Capacity) listed on the PFTs. These are very important numbers. Know the medications and why they have been prescribed.
Further down the road, it is important to be tested for pulmonary hypertension.
Transplants are an option. Learn about them.
2 comments:
Good day to you! I have been recently diagnosed with HP. Initially, we all thought I had developed Hypersensitivity to our cockatiel. We found Carlos a new home, gutted our family room and had air ducts cleaned. I still had some inflammation. We had a mold Specialist out who found a little mold in our basement and under kitchen sink. A leak that went undetected from previous owner.We addredded these issues and had our house treated to kill mold spores. We also ripped out all of our carpeting and are replacing with wood, tile or cork. Initially, I was on 40 mg of Prednisone daily for 3 months. Once tapering began, shortness of breath returned. I was then put on Azathioprine, started at 50 mg daily...now up to 100 mg.Along with 20 mg of Prednisone. I did well for about 5 weeks. Biking up to 5 miles three times per week. Now that Pollen is in the air, my lungs are on fire. I'm transferring records to the U of M Interstial lung Center. Last Eve we had an HVAC special out as we are now getting an air exchanger and an extra hepa filtration system along with a uV bulb in furnace to kill any mold spores. Praying for a resolution when I get to U of M. I don't think my current team is equipped to deal with me. I need the brightest minds now that we know I have Hypersensitivities to many things. Hanging by a thread with the current flare up. I'm 50 years old and just keep hoping I can get my teenagers through college. Daughter is 14 and son is 17.
I am so sorry you are going through this. You have done everything to insure that the air you breathe everyday is clean. Good for you! You and I were both on the young side when diagnosed. I hope you have been able to continue to work, though I was put on disability because of my exposure to my students at school. Sounds like you are being treated at the right place. Another good for you! My only suggestion is that you look into a local pulmonary rehab program. Work out under supervision. It is also a place where you learn a lot about the disease and how to deal with it from others in the program. You will feel so much better in a short period of time. About your kids, you have a whole lot of years left and you may even have a better quality of life if you participate in a rehab program. I promise. Give it the first 8 weeks. It's paid for by insurance. Good luck to you!
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