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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2 months. I was seen at Mayo in Minnesota over a 2 week period. I received so much info from all of the evaluation. I have been overwhelmed & scared & I have been trying to process all of this on my own. It hasn't been going to great so I'm trying to reach out & thought what a better group to talk to than others who are going through similar life experiences. After have a positive MAC culture from my bronchial washings, I was told that I had MAC & need to be treated. Previously (Sept. 2016) they diagnosed me with bronchiectasis. Nothing was seen on my CT scan or X-ray that showed the colonies seen from MAC. One of the big reasons I was going to Mayo was to get an expert opinion from Dr. Askamit. After Dr. Askamit read through my many, many, many records over a course of 10 years, since I first got sick, he concluded that at this time I may have MAC but it should not be treated at this time because it does not appear on a CAT scan. I must tell you that I was shocked by his response as it was completely different than my pulmonologist locally. And to be honest, I seem to have met the criteria to be considered to have MAC & to start treatment. I have many underlying illnesses & it's so hard to sort out what is what. Dr. Aksamit said to wait until it is seen on a CT scan. I have very mixed feelings about this. I am concerned that I should just wait until I become more infected to start treatment. Personally, I'd rather treat it BEFORE it gets worse. I guess I'm the only one who things that. My local pulmonologist changed his mind & decided not to start treatment at this time. Don't get me wrong, I do NOT want take all of these meds that can cause such grief & danger!!! I also don't want to just sit around & wait for things to get worse!!! Am I wrong in thinking that?? I value your opinion. Oh, and I have had the bronchiectasis diagnosis since Sept 2007 based on CT scan but now, when Dr. Askamit looked at a different CT scan, he said he didn't see that. I'm SO confused. I know one thing to be true...I'm in a mess of a health situation with multi system dysfunctional & disease. I am sick every day of my life for 10 years now & without an underlying diaganosis of what disease I have in the lungs. They said I would not make past 2 years but here I am, 10 years later, alive & trying my absolute best to lead as much of a normal life as possible...mostly for my family. I'm back to a point where I am requiring supplemental oxygen again. I had been able to breath on my own for the past 3 years. What changed? We don't know. I go into respiratory failure several times a year resulting in hospitalizations. We still can't answer the question of why my lungs don't convert oxygen from the air I breath in??? Anyway, I apologize for rambling on. I have been so withdrawn & sad, scared & lonely since receiving all of this new information. I also learned I have stage 1 heart failure & other metabolic syndrome that leaves me as the "perfect storm for a cardiac event" as the physician stated it. I ended up at Johns Hopkins a couple weeks ago with an excellent cardiologist who is trying to help my sort things out. My weight is a contributing factor to my alveolib hypoventilation &
We discussed having the stomach sleeve procedure to help me loose weight. There is so much on my mind & I apologize that I just rambeled on without even diving the long note into paragraphs!!! That's just how my mind has been lately. I am in NO way trying to ask for self-pity...I'm just trying to get through my reality of day to day life the best that I can & with the most quality that I can. I'm just so confused right now. Oh, I had another bronch done on Wed. & we sent the washings for culture & this will probably be the ultimate testing to see if the washing show positive for MAC. We won't know for 6 weeks! Again, I welcome your feedback... thanks for taking the time to read this!
Replies to "Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2..."
Hi @boomerexpert, wow, what insightful words of wisdom! Thank you for pointing out that yes, anger is exactly what I am feeling right now (along with feeling depressed, which I have a long standing history of) & that it is normal, justified & by looking at it that way, you can see it & name it more clearly! Thanks! Much love, Jen
Very true...
Hi Terri M, I too wanted to go to an outdoor arts festival Monday but resisted. It was a hot & somewhat humid day. I'm so glad I didn't go although I am sad that I didn't get to go to a traditional annual festival. It bothers me that my illness keeps me from things I enjoy. I'm trying to learn how to let go of that.
I didn't go anywhere today including my family picnic because of my breathing, sweating & my very high blood sugar. Oh well... I too am happy to have my bipap & oxygen to breath at night!
HI @jentaylor,I understand your confusion with so much going on including depression, Depression is such a nasty, debilitating monster, that can prevent us from healing. Hope you are getting help to kick it to the kerb, after 9 years I finally found the right doc who has taken the time and replaced things I have been lacking(like serotonin etc) and it has made a huge difference in my life, like coming out of a coma! I hope you can get the right help also.
Hi @heathert, yes depression is a MONSTER & is a pro at telling you lies about so many things. I have been taking meds since I was 12 years old. I finally have a great combination of 4 different meds after my great family doctor had me take a genome study to evaluate which meds work best with my body & how I metabolize them. It was very helpful information. The depression & anxiety are a big contributor of why I don't want to wear my oxygen in public or even at home with my family. It also tells my lies about how I look at myself & my self worth. It's a never ending battle but I am making great strides in therapy! I have a very dark & upsetting (to say the least) past that set me way back from where I ought to have been.
I actually felt it was unfair for me to get such illnesses that I have, especially the lungs, because I felt that I had my fair share of dealing & overcoming so much in my life. This way of thinking does not serve me well. I try to let it go but I can't seem to actually succeed in this. I guess life is unfair at times but e have to find the positives & focus our attention there & be grateful for what we do have.
@jentaylor Hi Jen, it sounds as if you are now on the right track. When I was dealing with cirrhosis prior to transplant I avoided the "why me" (a la Nancy Kerrigan) because I figured why not me? I try to live a decent life, I've had my ups and downs, but there are many people better than I am who are dealing with worse than I did and do.
On an intellectual level I do wonder how this happened but I chalk it up to letting myself get WAY OVERWEIGHT which led to diabetes and then fatty liver which led to cirrhosis. I know not every overweight person has these problems but I think a person's physiology determines what effects them.
Good luck staying positive, that can help you overcome so much. You sound as if you are progressing very well in that direction.
JK
Hey Jen. Diabetes is a pain the rear to deal with. I have friends that
battle it. It is tough. It is like boxing with the invisible man. I hope you can
get your levels straight soon. Big Hug! Terri M.
Hi Jen, I used to feel bad about not doing things that I should be able to
do or used to enjoy doing. Now, my fatigue is so bad that I tell myself "gee, I
am so glad I do not HAVE to go to that function. All I want to do is stay home,
be comfortable and rest." I guess that is my way of accepting that. BTW, I am
still paying for going to that art fair. You were smart to stay home when you
did. - Hugs!
Yay!!! for you Heather! So glad!
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Hi Terri M, your post seemed just fine to me...no worrries! Today was so frustrating... I spent the whole day battling with my blood sugar to make the blood sugar lower with no avail! For the last 2 weeks my blood sugar has been out of control with super high numbers that I have never had in all of my 10 years of having steroid induced diabetes! No matter if I give myself a very high amount of insulin & then barely eat any sugar/carbs, it's still high, high, high!!! I've been sweating like a pig from it all day! I'm too embarrassed to go out because the sweat just pours out of me! I absolutely hate having diabetes especially when I have no control at all over it! I just feel like it is flaunting it in my face that "it", my diabetes, wins today & I loose, despite my healthy choices to reduce my blood sugar numbers. Anyway, I will stop venting now! Thanks for your kind words! Much love, Jen