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desperada (@desperada)

Untreated MAC

MAC & Bronchiectasis | Last Active: Aug 24, 2018 | Replies (85)

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@windwalker

Dear @desperada, Your story saddens me. My condolences on the loss of your husband. I know it is a big adjustment to life without him. I am very glad that you have two dogs. They'll keep you going. I have one little teacup poodle that goes everywhere with me and she never leaves my side. It is important to have that added energy in the house to curb loneliness. I was diagnosed on 2005 with mac; I too declined the Big 3 meds. And yes, that pulmonologist was furious with me for doing so. I found a new pulmonologist. Over the following years no pulmonologist knew much about mac or how to treat it. I was VERY sick for a number of years and was told I was headed for a lung transplant by my local dr. He suggested that I go to Florida and seek help at Mayo. Mayo dr agreed, I was getting close to needing a transplant. That was in 2013. I was tested for pre-qualifying for a double lung transplant in 2016. I was placed on the 'deferred' list because I was not quite bad enough to get listed yet. I have been under care at the Mayo Clinic since 2013 and today, I feel like a normal human being! I once couldn't walk 15 feet without stopping to catch my breath. I can now walk many blocks and ride my bike 12 miles. My point is, never give up on yourself. Good medical care can make a huge difference. I have a feeling that your grief is making your other health issues feel that much worse. The mind and body are very much connected. I hope that you will take the time to read over older posts and glean some helpful information about dealing with mac. It would be great if you could get to one of the Mayo clinics. Besides having the best doctors (people come from all over the world to see them); they are always compassionate and respectful of their patients. I am here for you friend, as well as others in this group. You are not alone in this. Getting to GOOD medical help is what you need. I would be happy to look up the nearest medical facility that may be better equipted to deal with mac. May I ask where you live?

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Replies to "Dear @desperada, Your story saddens me. My condolences on the loss of your husband. I know..."

I live in Menifee C a. I just had an appointment with my PCP this morning. When I shared my decision with him, he pretty much took on the attitude that I was no longer worth much more of his time. I tried to have a discussion with him – he just smiled kind of pathetically, didn't answer me or pay much attention.
A lot of influence in my decision has to do with the poor health care, the lack of knowledge/experience and just apathy.
My ID and Pulmonologist push my follow up appointments so far out, I don't get a chance to get my issues addressed. I don't see anywhere where my strain has been identified. I'm not even sure what my severity is.
My PCP this morning gives me 2 years! EVERY SINGLE THING I have to initiate myself. I want to get a follow-up CT to see my progression. He left the exam room leaving me sitting there and didn't write me an order. WTH! I just left and came home to take care of the dogs and have lunch.

Oh! I also asked for some respiratory PT – he said OK – and didn't write me an order. He recommended I take Reishi Mushroom, and OregaBiotic for my immune system. Next week I go to se another doctor to get complete PFT's including 3D challenge. I'm thinking if he treats me like the others, why bother! Honestly, my dogs get treated better by their Veterinarian! Hey! Maybe I should discuss my issues with her next month when I take my dog for his B12 – HA!

@desperada Ha! Your vet might be a good one for you!

@desperada That is such BS! You NEED a good doctor. I will see what I can find out for you. So, your PCP said you have two yrs. Two yrs for what? Two yrs to live? Girl, you def need someone different.

Two years to live! Or two years to die! Take your pick!

@desparada University of California San Diego
9300 Campus Point Drive
La Jolla, CA 92037
Tel 619-543-6146. Is this too far for you? I will see if there is one in Riverside too.

I just called. Not taking any new patients either! I'm starting to believe these people have my name pop up when I call not to treat me.
I can't believe this.

@desperada Personally, it I was you, I'd drive over that mountain range and go to the Mayo Clinic in Phoenix, Az. (Mesa) you do not need a referal. You can check to see if your insurance covers you there. All tests are done in one day, maybe two. Test results are back the same day. At the end of the day, you meet with the pulmonologist and that dr will explain what is going on and get a treatment plan together for you. Bear in mind that a sputem test for mac takes about 8 weeks to grow and do a suseptability test on it. That is a test to see what antibiotics actually work on your mac. Not all mac is the same, so there is no set antibiotic to be prescribed. It would be wise to call your dr's office and ask for a hard copy of your lab results. You should keep a file at home for those. Tell them you want the results complete with colony size and the suseptibility test. If they did not have that info in your lab test, then they are not being accurate or thorough which would cause me to be suspect of how much they really know about mac. What are your thoughts?

@desperada No, don't say that! They are just busy with too many patients. Lung diseases are on the rise you know. Usually the ones not taking on new patients are the best ones; everybody wants to go to them. Have your name put on a waiting list while you keep shopping for a good doctor.

THERE IS NO WAITING LIST! NOT AT EITHER PLACE! I told them I was going to drive there, and they told me DON'T come!!!!! I even called Admin in Minnesota – they told me DON'T GO!!!!!!

You're right, no one did a sputum test. I know they aren't taking good care of me! They won't even give me the definitive reports they have. Believe it or not – this is getting too nuts – keeping my own medical records from me. It's illegal, but I have to fight a different war right now! It does say on the CT scan I have the mycobacterium avium – just generalized – not specific of course. I know that makes a difference in treatment. I am not losing weight or coughing up blood – I think they're making me sicker than I am – maybe.
I called down to Scripps La Jolla – I am an established patient there from a few years ago.
I faxed what I have to their ID Dept. Of course it's Friday – the doctor will look at my paperwork next week and let me know if they will see me.
Honestly – I had a war with the girl on the phone – she wanted it faxed ONLY from the doctor's office over "secure" fax. I told her I don't care – just take my fax PLEEEEEEEEEZZZ!
So I sent off what I have. I'm putting this to bed for the week end. Going to grab a cup of coffee, some CBD chocolate, the dogs and just try and relax.
My husband was 100% Service Connected Disabled, so I get a few benefits.
Someone from the Vet Center is coming here today – My Anxiety Disorder has progressed to PTSD! My husband was on life support and I had to sign off on the DNR. He went for a simple exploratory straight to life support. I never got to speak to him. He died in the middle of the night before I got to the hospital. Al that totally sent me over the edge. Then this all hits the fan! Lordy!
So all of these things you all are telling me are VERY MUCH appreciated – probably if I was a bit more "normal," I could handle and process it much better. But this is the best I can do – I can only slay one crappy dragon at a time.
All of you have a terrific week end and thanks!

How did they diagnose you with MAC without a single sputum test? CT scan can show that your lungs are not healthy. Correct me if I'm wrong, @windwalker Terry, but I don't believe the CT scan or chest X-ray can show whether you have a bacterial infection or not without sputum test result.

Oh! You know what? They probably took a culture when they performed the bronchoscopy on June 12. I guess that's the culture they said takes 8-12 weeks. So I'm still waiting on that! Things are so messed up. I ask the doctor's office for copies of results and they give me summaries. I'll figure it out next week. Everyone's gone for the week end now anyway.

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