24 Hr PH test for GERD - question for those who have had this done

Oh that wasn't me. That was me quoting someone else and saying I loved it. I believe it was @hopeful33250 .

@tdrell Ditto re: claustrophobic in MRI. Good thing he went with you. I think if I ever have another one I'll be breaking out the Xanax.

Jen - Thanks for your feedback. It is just very frustrating at times. When I tried the CPAP I used it for about 5 weeks and sometimes felt worse in the morning than before I used it. I have just mild sleep apnea. I have been through pulmonary rehab which helped some and I exercise every day - but not enough aerobic I believe. Yes, all the doctors have their biases. Most local pulmonary doctors do not know much about bronchiectasis. I had the breathing tests done recently after two years and my lung capacity is about the same. At least it has not gotten worse. I do continually cough up a lot of mucous when I use the 7% solution. If I don't use it I am coughing all day and people think I am contagious - so that is better. I sure have learned we have to be our own advocate. I remember is my 20's my primary doctor doing the basic breathing test and I did terrible then. I wonder if I have never had full capacity in my lungs since birth. I have read that when first born those first yells of breathe are what starts the lungs working and if not strong then they may never be. My pulmonary doctor says that is possible - but I will never know. He believes I have had bronchiectasis for along time. I have been diagnosed with asthma about 25 years ago and have had many, many flare-ups over the years which have probably all slowly damaged my lungs.Thanks.

Hi Barbie, luckily my pulmonary doctor is also an NTM specialist so he is familiar with bronchiectasis. That's too bad about your breathing capacity always being very low. I wonder why? Maybe from the asthma? Even when they said I had asthma (which they then said I didn't have at National Jewish) my breathing capacity was up in the high 90's so I guess I am lucky. I just always wheezed but I think that was probably from the undiagnosed bronchiectasis although I had had xrays that showed nothing until the cavitary lesion showed up beginning of last year during a pneumonia check. Then the fun began and I joined the group of damaged lungs folks (sarcasm here).

Hello All, your comments & experiences continue to help me try to find my way along this path!

After going to a local pulmonologist & ID dr's, I went to Mayo (Rochester) where I was put on the "Big Three", supposedly for 14 months. I did fine with Zithromax and Rifampin, but reacted dramatically to Ethambutol. (Intermittent stabbing pains in skull, wavy & unfocused vision) on my 2nd dose. My new local ID Dr. at the University of KY sent me to an opthalmologist, who told me about one of his patients (whom he thought was overdosed) going permanent blind.

The ID doc at the university has subsequently taken me off ALL MAC meds for the next 2 months until I see her again. She says that many folks find the treatment to be more damaging than the disease. (BTW, I've been told I have mild bronchiecstasis.)

Pretty much have decided I will decline taking Ethambutol unless someone can convince me it's truly necessary!
SO confusing bouncing from doctor to doctor this summer, all of whom have differing opinions.

I am an active 59 year old who exercises regularly. I don't cough very much (& cannot produce much mucous), have mild fatigue & Mayo doc says my immune system is good. Bronchoscopy showed MAC in lower right lung (confirmed by lab at Jewish National) & various nodules in both lungs. Only other fungus that tested positive is histoplasmosis, which is very common in the Southeast.

It is so hard whether to treat or simply monitor this!! Any tips appreciated.

@tdrell

Thank you for your kind words, my career was a combination of teaching (until my health changed and I could not handle the physical demands of teaching), then I worked as a legal assistant in a small law office until I retired. A year after retirement I became self-employed and now do transcription for a psychologist. So, a little bit of a lot of things!

Teresa

Back home from having catheter placed. The first test Esophageal manometry, was very gaggy and uncomfortable. They use a bigger tube for this than the one for the 24 HR. PH test. Putting in the smaller tube for the 24 hr ph test wasn't bad. I find it very uncomfortable to wear however. I'm trying to eat like normal but swallowing causes it to move around and I think my nose is really sensitive after having that larger catheter in it. Or I'm a wimp. Either way, not fond of it and I find it painful in my nose. Managed to choke down some toast for breakfast but not looking forward to when I have to eat again. I'm glad I took my husband with me to drive because I just wasn't comfortable turning my head or anything. It's going to be a long day but it's only one day and I'm sure other have endured much worse. I haven't ever had surgery or really anything invasive other than the PICC line so I think I tend to be a bit of a wimp. The results will be worth it (keep saying this to myself). 🙂

Wishing you well today, Jen @jenblalock

Teresa

Thank you. I am doing better. Took some ibuprofen and doesn't hurt anymore. Just annoying which I can handle.

Best to you, Jen. Hang in there!! @jenblalock