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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)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..."
Dearest @jentaylor, I'm so glad you had the courage to post when you're feeling this way. It can be hard to take the time and try and write it all out. Thank you for just dumping it all out. And like Irene said never apologize for being honest about how you feel. And as you said, what better place to help get those feelings sorted out with your friends here on Connect. I know members will come in and share their support and thoughts about waiting vs action.
Hi Irene, it helps to have someone understand & "get it" & doesn't try to minimize it...thank you! It's also good to hear someone else say, "yes, wait" on starting treatment until either another positive culture &/or it's seen on a CT scan. Ok, will do. Thanks you, Irene!
Please All .. jump in and help .. support Jen in all the loving caring ways I know our Community is capable of .. I know you can do it!! Hugs to All! Katherine
Jen, I CANNOT tell you just HOW glad I am to hear from you .. I have been SOOOO worried about you .. my final plea to your husband was my cry in the dark .. truthfully I was afraid you had passed away and we would never even know about it. I do not have words to say to tell you how badly I feel about all you have been through .. all I can tell you is you know I care from all that has been in the past .. I will just keep sending you positive energy and hugs. I will try to write more later but know I am thinking of you. Many Hugs! Katherine
Hi @colleenyoung, thank you for taking the time to read all of my feelings & validating that "it's ok"! I felt such heaviness while writing it & I just didn't have it in me to organize my thoughts & like you said, I felt good to just "dump". I often (well pretty much always) hold back from expressing my feelings, especially fear. I do this especially with my family because they tell me that they can't handle the fear themselves. I have a couple of friends I can go to (via phone, or texts since they live far away). So, pretty much I only speak of my feelings when I'm in my therapy sessions. Therapy is such an awesome, safe place to feel my feelings & know that it's ok...she is a great therapist that I've been going to for a long time so she knows me so well! I see her 2 days a week. It finally dawned on me to try & reach out to you all on Connect. When I'm depressed & scared, I withdrawal. I'm trying to get past that, fight that, by reaching out to you all. So thank you for your responses. It means SO much, really!!! It's also really helpful to hear your responses/educated opinion on waiting to treat until it's seen on a CT Scan. Thank you, @colleenyoung
Oh, sweetest Katherine, you are so dear!!! You hold a special place in my heart! While at Mayo, I went into respiratory failure & ended up in the hospital. I was on my on in the hospital, scared & alone. I was then discharged & continued with the Mayo expierence. It was such a trying visit & I was simply overwhelmed! I learned SO much about what's going on with me & wow, it's craziness! How could do much be wrong!?!?! And how do I manage all of this?!? I need so many interventions! I'm apparently at a great risk to have a coronary event in the near future. I'm apprently the "perfect storm" as they phrased it. I didn't know that I had the dystolic dysfunction, stage 1 heart failure. I learmed I have bronchomalacia in addition to the bronchiectasis along with retaining carbon dioxide & alveoli hypoventilation. Of course I have the hypogammaglobulinanemia which means I'm deficient in IgG for which IVIG (IV infusion of antibodies) every two weeks.
It's too much for me to handle! Then since coming home, for whatever unkown reason, my previously controlled blood sugar, now is uncontrolled even with high doses of insulin! I'm talking about my fasting blood sugar this morning 279 today!!!! And while at Mayo, we discovered that my pulse ox has been as low as 71% which meant is still means that I need to be wearing oxygen! I HATE wearing oxygen! Everybody looks at you, wondering what's wrong with me, especially since I'm s relatively young age (42). It's just a huge sign to me, that I'm "sick"! I don't want to be "sick"!!!!!
I just haven't had it in me to share my feelings or what all is wrong with anyone...I'm just now feeling the strength to share with others including my own family & friends. Ben & I started marriage counseling so that I could talk about my fear in a safe place with my husband with the help of a therapist.
I truly apologize @katemn, for being so distant & leaving you to wonder & worry. It's not right of me to do this to my friends. I'm trying to compose a summary of all that I learned at Mayo to post on my gofundme update page. So many people helped me to get to Mayo & I feel terrible that I haven't let them know the result of the trip. I'm working on it now. So much came from the trip & it's SO much to explain it all... I know it's not necessary but there are many that genuinely care & they want to know because they care.
Thank you, Katherine for being so genuine & caring! And thank you for asking others for help to support me! You are great!!!! Much love, Jen
My heart goes out to you. What you are doing seems to be keeping you alive, so that's one positive note. Keep doctoring and seek patience. shalom!
DAvid
Thanks, David!
Jen, you know you have a special place in my heart .. that I have followed your journey from the beginning .. was SO concerned when I didn't hear from you after your last posts. You KNOW you are now in the right place .. that you have returned home to Connect at last .. that our caring Community will be there for you on the rest of your journey just as it was in the past. You just have to stick with us now that you have returned!
I found Ben by following your Facebook page .. Jen .. he sounds like one heck of a guy .. you give him a hug for me and tell him I think he is just great! From Momma .. couples counseling is an EXCELLENT idea .. but he is a really good Dad .. AND he has stuck with you though "sickness and in health" .. give the guy a break?! One piece of advice I would give you .. my husband and I say "Our kids love us .. our grandkids love us .. but at 3 in the morning .. it is just you and ME Babe!". ALL marriages have their ups and downs .. you just have to tough it out in the downs .. ESPECIALLY ages 45 to 55 .. but in the end .. NOBODY will share all the memories with you like Ben will .. just how cute your daughter was when she was waddling around in diapers at age 2 .. just think of all the memories you have shared .. don't lose all those years. Give each other a break .. count to ten .. go back and remember WHY you fell in love with each other .. reach back to the happy times. You CAN find them again. I'm rooting for you!
Jen, I have read through the various posts from our Members .. I really can't add any additional words of wisdom .. merely second their good advice. ESPECIALLY the advice that TOMORROW you make the DEFINITE decision to grab that oxygen tank and walk just ONE block! Then add ¼ block as you are able! Jen, this is coming from MOMMA! Who gives a flying leap if ANYONE looks at you funny with you walking with your oxygen tank!! Jen, WHO DO YOU ALLOW TO GIVE YOU OPINIONS OF YOURSELF????? YOU are the ONLY one who KNOWS WHO YOU ARE!! Phooey on anyone/everyone who give you a funny look .. who gives a darn! ALL you should be concentrating on is getting healthier .. increasing your lung function!! THAT IS ALL! By darn if @windwalker, Terri with her lungs waiting for a double heart transplant .. goes to the gym with HER oxygen tank .. who are you and me to worry about "looks"?! NOPE!!
Also Jen, have you purchased and are USING? If not .. GET IT!!: from my File Cabinet
Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com https://www.youtube.com/watch?v=p7FAFY4PsQY PURCHASE: https://smile.amazon.com/Expand-A-Lung-Breathing-Fitness-Exerciser/dp/B00JWTRA5I/ref=sr_1_1_a_it?s=digital-text&ie=UTF8&qid=1496000894&sr=8-1&keywords=Expand-A-Lung+Breathing+Fitness+Exerciser Read the reviews and how to use at https://www.amazon.com/Expand-A-Lung-Breathing-Fitness-Exerciser/dp/B00JWTRA5I
https://bronchiectasisnewstoday.com/2017/01/10/aerobika-device-shows-promise-treating-bronchiectasis-copd-exacerbations/?utm_source=BRO+E-mail+List&utm_campaign=198910888f-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-198910888f-71558577
Jen, sending you a Big Hug and glad to see you back! Katherine
Oh @jentaylor what alot for you to get your head around,I really feel for you. You have already proved the doctors wrong by 8 years and if you can get your head in the right place you can carry on doing so. Dont know if you have tried meditation, but it is really amazing and can help you with this. I have heard that Dr Askamat is a great doctor, but maby you he needs to send you for a up to date ct scan now for him to review rather thasn going by past scans. I wish there were doctors who specialised in everything that could sort it all out for you at once. Please take care and keep in touch, sending you hugs and well wishes.
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I am very sorry you are suffering so much Jen. Having little quality of life is hard. Having underlying conditions can be almost too much to bear. I am in agreement with Dr. Askamit. If the culture grows MAC in 6 weeks, then you might revisit treatment, but if it hasn't shown on a CT scan that is significant. Never apologize for being honest about how you feel. Being sick day after day year after year is overwhelming and challenging for anybody.