Share this:
kristiemlove
@kristiemlove

Posts: 21
Joined: Dec 04, 2018

My 68 year old mom. I need support. Please!

Posted by @kristiemlove, Dec 13, 2018

My mom: healthiest woman in the world. She is TRULY the epitome of health and always has been my entire life. Walks 4 miles/day, 4 days/wk. Eats all natural, raw, organic foods, drinks her Bragg's Apple Cider Vinegar every day, herbs, vitamins, supplements. She smoked very briefly 45 years ago. Bottom line: MY MOM has ALWAYS done EVERYTHING RIGHT.

Ten weeks ago, she very suddenly got what appeared to be 'bronchitis'. With zero improvement with antibiotics, it escalated to 'pneumonia', bronchiectasis, 'Valley Fever', MAC, etc. Throughout, she visited her primary doctor but had to go to hospital multiple times after-hours with the inability to breathe. She was given antibiotics and anti-fungals, then finally steroids and oxygen, which she has been 100% reliant upon for 6 weeks. She has never had a fever.

Oxygen 24/7 for a few weeks. She did get down to 14-16 hours a day. When attempted to taper off the prednisone a couple weeks ago, she quickly resorted back 100%. Four CT scans, a bronch scope biopsy, and multiple testing thus far show bronchiectasis, MAC (initial 'cousins' at this point), severely scarred lungs and infection throughout all 5 lobes with ZERO progress in 10 weeks.

When 'diagnosed' with MAC by her Infectious Disease doctor and living in Dallas, TX, I found UT Health in Tyler, who specialize in bronchiectasis and MAC. They scheduled her for next week due to the severity. Unfortunately, because it is not more progressed, that has been put on hold until the 'Final Results' are received in 4 weeks.

She saw her pulmonologist yesterday. Her lung capacity is 50%. She is able to walk for 1 minute before her SaO2 drops below 85. They do not know what this is, but they know they don't have time to wait for the final results. Therefore, they are finding a surgeon to perform the VATS procedure next week.

I have been speaking with a wonderful woman on the MAC/Bronchiectasis forum the past couple of days. Based on her experience and mom's symptoms, this has been much too aggressive to only be MAC/Bronch. She gave me a few suggestions to research including Pulmonary Fibrosis.

Thoughts and realistic expectations?

REPLY

Is it possible to take your mom to a medical center that has a team of pulmonary and thorasic doctors?
ie; Mayo Clinic, Rochester, MN.? From my personal experience, UT may not be the best place for her condition?
Remember, you do not have to be recommended to be medically evaluated at another facility or research center
like Mayo Clinic. I say this, because I am a an 11 year lung cancer survivor. Mayo Clinic physicians, listened to my
symptoms and a CT scan revealed I had a 3cm tumor in my left lung. Surgery saved my life. For two years local
doctors in another state outside of MN…did not listen to me, and because like your mom, I looked healthy was very
active, ate well…etc., they did not think anything was wrong with me. Because I never smoked they refused to give
me a chest x ray. I too, was diagnosed with PF. But, I keep active and now run and x country ski.
Best

@kristiemlove– I'm so sorry that you have to see your mom go through this. Often illnesses seem to pop up over night out of no where. I agree with Linda that it a good idea to get a second opinion somewhere where there are teams of specialists. I found a group who is dealing with this same illness here, on this site.
https://connect.mayoclinic.org/group/mac-bronchiectasis/
Please think about seeking advice from another medical facility and keep us updated. How are you holding up?

Yes, I have been discussing with the forum lead, Terri. She is no longer going there since the results were too preliminary. She needs the surgery ASAP. Her doctors tried to get her into Cleveland Clinic or Mayo, but with the holidays, there is no availability. And she can't wait.

@kristiemlove – I don't understand what you mean that the test results are too preliminary. Would you explain this to me please. Why, if this is so, does she need VATS immediately?

We drove a relative to Mayo Clinic ER at St Marys Hospital on a Sunday, where she was registered into the Mayo system; she was seen by a team of doctors; sent to a speciality team at Mayo/Gonda on Monday. We showed up at 0700 as a CHECKER. She was seen that morning!!! She, had test, CT scans we showed up as a CHECKER…and was in life saving surgery by Wednesday!
We did this after her local doctor said he couldn’t get her in!
Take all records with you!
We book hotel thru Hotwire.com in the “city of Rochester” usually at a discount $70.00) at Kahler Inn & Suites.
We park car in Mayo Ramp (purchase $25.00 parking card for $4.00 Best parking rate! This has been our life saving experience many times.
OR we book on Delta Airlines MAYO CLINIC PATIENT low fare, they will give discount and wecan change return dates.
When we are ill and local doctors are out of answers this has worked for our loved ones.
Sometimes We Must Be Our Own Advocate!!! You may private message me .
Best,

@llwortman– I am so glad that you wrote this. We always need to be in charge of ourselves.

@merpreb

@kristiemlove – I don't understand what you mean that the test results are too preliminary. Would you explain this to me please. Why, if this is so, does she need VATS immediately?

Jump to this post

They see the initial growth of MAC, but not enough colonization to know exactly what they are dealing with. MAC needs a full 6-8 weeks of growth. She was diagnosed at only 2 weeks, which is too soon.

In addition, it is too rapid-growing and advanced to be only MAC. They know there is more going on. Supposedly, she does not have enough time to wait. They have found the best thoracic surgeon in Dallas; she is meeting with him first thing Monday morning.

Great news!

Please login or register to post a reply.