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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don't know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.
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@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don't mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.
@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN'T have to be that way. If you CHOOSE a "helping" career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a "helping" career. That is just my opinion. I don't feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member's path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine
Replies to "thank-you for being here Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago I was..."
@ijustdontbreathewell, indeed there is a Mayo Clinic in Jacksonville, Florida. Here's the contact info. http://mayocl.in/1mtmR63
Other members from FL include @maryjo2sell @dianeray @boomerexpert and @nikolaiw. Also @Paula_MAC2007 pulmonologist moved practice to Florida.
Mayo in Fl very good...so is Chapel Hill in NC...Raleigh/Durham no expertise w/MAC
<br><br><br><br><br><br><br><br>Thanks , I have not had time or actually the strength to google it, Jacksonville?, uh Floridians don’t consider that Fl, we consider that Yankee territory,<br> I was hoping for Miami, J I have people to stay with and to help with my care and welcome my dog,<br> in south FL. So, if anyone knows of a good MAC person in S FL please advise.<br> <br><br><br>
Try the Cleveland Clinic - has a So FL site. Also try https://www.ntminfo.org/patients/physician-referral-list - I found my doc there...he knows his stuff
<br><br><br><br><br><br><br><br>Thanks so much for the link, I will try Chapel Hill first, someone said that Duke is not so great, I will ask the guys that I know in pulmonary down the hall<br> if they know any of these at CH. But it is good to know about S FL as well, I really don’t know how much longer I will be able to be self- sufficient and will need to be home. On my way to harass medical records for copies of absolutely everything they have<br> ever even thought about having …..<br> <br><br><br>
If you're losing steam fast, recommend you go where you have support...sounds like that's So FL. Found this doc w/Cleveland Clinic: http://my.clevelandclinic.org/staff/19076-ignacio-echenique
@ijustdontbreathewell, .. if you having these kind of issues .. if I was in your shoes .. I would head for the BEST myself .. Mayo Clinic : per Colleen below .. there is a Mayo Clinic in Jacksonville, Florida. Here's the contact info. http://mayocl.in/1mtmR63can confer with the the MAC doctors in Rochester Mn ..
but AT LEAST consider what Boomer has said Posted by @boomerexpert, 1 day ago
If you're losing steam fast, recommend you go where you have support...sounds like that's So FL. Found this doc w/Cleveland Clinic: http://my.clevelandclinic.org/staff/19076-ignacio-echenique
Hope we have been of some help .. sounds like you are in a tough spot. Keep us posted. Katherine
@ijustdontbreathewell, I have been off the Forum with a family issue but just tonight have read your several posts .. unbelievable what you are going through .. I am SO sorry .. what a mess .. having just gone through a bunch of medical issues I am so aware of errors .. misdiagnoses .. lack of concern .. on and on and on. I really understand on a MINOR level compared with what you have gone through. BUT based on what I have read .. if I was you I wouldn't ;mess with it much longer .. I'd go get the BEST medical care at the BEST medical center .. remember .. you are only given one body in this lifetime .. if YOU don't take care of it .. it can't take care of you! I hope you make the right choice .. not the easy choice for that poor body of yours that has been through so darn much! Sending you a hug in this REALLY tough time. Katherine
<br><br><br><br><br><br><br><br>thanks for the encouragement, if you saw my earlier post I took your advice, I got very tired of the nonsense, so I just went to the middle of the pulmonary<br> office suites and to the friendliest secretary, DVD in hand, and loudly but politely, asked if any of these doctors knew anything about infectious disease, MAC in particular, I have a very ugly DVD here. I now have 3 specialists. I will let everyone know if<br> they prove to be any good. And then I got up this morning and went over to the competition hospital and connected with them and got 3 new medications. I am tired and my head still hurts, but this is my fight and I will fight it. And I am so glad for all of<br> you and your suggestions and kindness. Take care.<br> <br><br><br>
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<br><br><br><br><br><br><br><br>I live in NC, and I work for a very large “teaching” hospital, nationally recognized supposedly, I am beginning to wonder for what? My colleagues are advising<br> that I get to another hospital. I am going to look into FL, someone on here said there was a Mayo in FL. Well, at least I know that we have a thorough and great Forensic department. If anyone is familiar with the Mayo FL please advise, I have a good friend<br> in FL, and that is where I am from originally.<br> <br><br><br>