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franciscoconde
@franciscoconde

Posts: 1
Joined: Feb 11, 2019

Looking for Specialist in Central Florida or NYC (Or anywhere really)

Posted by @franciscoconde, Sun, Feb 10 9:59pm

My father has been in and out of the hospital with trouble breathing, coughing etc.. since July 2018 – On and off of antibiotics – sent home on antibiotics via intravenous (minocycline, levaquin – not sure of the names) begins to feel better but then once off the antibiotics it all starts coming back again. On one sputum sample he was told he has MAC but a second test was needed to confirm – apparently that one was negative. The next test he has was from a bronchoscopy – results still unknown.
The doctors he is seeing at the moment are trying to blame his discomfort on COPD – But this was never an issue before – He was working on things in the house- remodeling etc.. previous to July 2017 – This is a sudden thing that came on to him and doesn't seem to be going away. He has had nodules on his lungs for many years although in more recent scans from what I understand more have appeared. I think it's time we find someone that can give us answers! I am really at the point where I will take a leave of absence at work if necessary to get him the help he needs. He is in Kissimmee, FL right now – close to me – but is a resident of Queens, NY. But if necessary and an excellent doctor can be recommended anywhere we'll go! Please help, we appreciate all the advice we can get. Thank you

REPLY

@franciscoconde – I see Dr. Javier Martinez, 685 Palm Springs Drive, Suite 2A, Altamonte Springs, FL 32701- 407 830 5577 – part of IDC (Infectious Disease Consultants-has another office in Orlando, too.). I just started seeing him – my ID doc from last few years decided to just be a hospitalist and closed his clinic office. Not sure if you have to have a referral – I just had to have all my records sent to him before I initially saw him — he listens, which means a lot to me. Hope this helps – Barb Schaper

@franciscoconde Did you receive my earlier private message? Eva

@franciscoconde Hello, and welcome to our group. I am sorry to hear that your father is struggling with his lung health. I understand the frustration in trying to get to the root of his lung issues and trying to find the appropriate care. You had mentioned that he had been on and off antibiotics since July of 18, & that he did better for a short while, then ill again. I am no doctor or medical expert, but it sounds to me like he is not being left on antibiotics long enough. That is a common mistake some drs make, especially if they don't know if they are dealing with either a mac, pseudomonas, or some other bad bacterial infection. My best recommendation is to try to get him into the Mayo Clinic in Jacksonville. I have been going there since 2013 and the drs there brought me out of the brink of needing a double lung transplant. My lungs were severely compacted with infection. What is great about Mayo is that all testing is done in-house and results are back the same day (in most cases) and a treatment plan started. You do not need a referral. The appointment ph number is 904-953-0853. Also, you will want to inquire about his insurance covering it. Other options are: Dr.Daniel T. Layish in Orlando 407-841-1100, and Dr.Ganesh K. Akula in Orlando 407-425-8824. These two drs are registered on a MAC specialist list provided by http://www.ntminfo.org There is also an Infectious Disease dr named Mark Wallace, M.D., I.D. in Orlando 321-841-7750. As you probably already know, COPD is a progressive disease that usually worsens over time. It usually is gradual unless other things like infections come on and cause scarring and clogging of airways. Your father really shouldn't be doing any home repair projects that would kick up small particles in the air like sawdust, sheetrock, insulation, etc. Paint fumes, (even low VOC), and lawn mower exhaust are harmful. He should wear a respirator or a good N95 mask when doing those kinds of things. I hope this info helps. Will you please keep me posted on his condition?

@bschaper2

@franciscoconde – I see Dr. Javier Martinez, 685 Palm Springs Drive, Suite 2A, Altamonte Springs, FL 32701- 407 830 5577 – part of IDC (Infectious Disease Consultants-has another office in Orlando, too.). I just started seeing him – my ID doc from last few years decided to just be a hospitalist and closed his clinic office. Not sure if you have to have a referral – I just had to have all my records sent to him before I initially saw him — he listens, which means a lot to me. Hope this helps – Barb Schaper

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@franciscoconde — I also see Dr. Layish as pulmonary specialist, too. Terri recommended him and I have been seeing him for about a year – very caring physician, another one that listens to you; Dr. Martinex, ID physician, for 3 months.

@bschaper Hi Barbara Ann! How are you doing these days? Are you starting to feel any better? I hope so. What are you doing with yourself?

@windwalker – been an interesting year– I continue to see Dr. Layish – he did GPS bronchoscope last April – found lung cancer in collapsed lower right lung. Not related to smoking, but a lung cancer that any age, any sex, any weight can get and they don't know why. He sent me to an excellent cancer doc – Dr. Tarek Mehkail in Orlando – I have been taking Tagrisso 80 mg since June 1st – with some shrinkage of the tumor. It is a chemo immunothreapy drug – a pill every day that tells my DNA to tell the tumor not to grow today. It is $18,000 a month but I do financial forms with AstraZeneca (AZ&ME) financial help program and they are paying for it all. Just got out of hospital again with double pneumonia and a lung infection. This time after hospital discharge, I went to a new rehab center, was the best thing I have done in a long time – I could drive when I got home!! Still doing outpatient PT. My MAC infection has not reappeared – stopped taking the big 3 August 30th per ID doc orders- bronchowash in hospital showed no MAC in January. Hey, I woke up alive this morning – happy as a lark!! Barbara Ann

@bschaper2 Wow Barbara Ann! I hadn't heard from you in awhile, so I thought you were doing good. I had no idea you had all of that going on. No wonder you arrived on our site feeling so lousy. Do you know the name of that particular cancer? Will it be operable after shrunken, or do they expect the Tagrisso pill to zap it gone? So glad that the mac tested negative. I love your attitude, you are such a trooper and an inspiration. Sending you a cyber hug, keep the happy lark going!

@windwalker – non small cell lung cancer — Tagrisso will hopefully shrink it down, else IV chemo would be next! Thanks for all your help, Terri!!

@bschaper2

@windwalker – non small cell lung cancer — Tagrisso will hopefully shrink it down, else IV chemo would be next! Thanks for all your help, Terri!!

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@bschaper2 Barbara Ann, I will keep you in my prayers. Know that medicine has come a long way in dealing with lung cancer. I have a friend that was diagnosed with stage 4 lung cancer just over two years ago. He is still here, and I saw a recent photo of him and he still has normal body weight. You hang in there and don't forget to use your 'mind over matter' techniques. Try your best to will it away. Big Hug X

@windwalker – I am a Pollyanna for sure. And it is stage 4. But CT scans this week show it is back to slowly shrinking! YAY.

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