Frustrated

Posted by barbjh @barbjh, Jul 30, 2018

I saw my doctor at Mayo the middle of June for a yearly follow up for my MAC infection. We are not treating it at this time, just monitoring it. He did a chest x-ray and pulmonary function test that were all stable. We discussed doing a CT scan but because they could not sneak me in he put an order in for me to have it done close to home. I had it done the following week and they pushed the images to the Mayo. I still have not received the results. Have called several times. I know he is busy and I do adore him but am frustrated that I have not heard back. They said he was backed up for months. I am sure if there was something serious that my hospital would have got in touch but I really wanted to see how it compares to the previous CT scan done at the Mayo. This stuff is so overwhelming sometimes and clear answers seem to help. Just venting!!

@tdrell

@windwalker terri….hope all is going ok with you….if you are home or evacuating.!!!
Meanwhile, I wanted to let you and others know that….unless my body won’t cooperate, I will be attending the Patient NTM Workshop in Denver at NJH on Sept 29, 2018. They probably are not taping it….dang. Meanwhile write any questions you might have ….I will see if I can get answers ….and will post. please start….if possible a thread that I can find the questions on. Tdrell

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@tdrell Hi Terri. Did you make it to the NTM Convention? If so, what did you learn?

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@windwalker

@tdrell Hi Terri. Did you make it to the NTM Convention? If so, what did you learn?

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@windwalker Terri….yes attended NTM workshop for patients and families in SEpt at NJH in DEnver. It was exciting to hear the announcement that FDA had approved use of the inhaled liposomal Amikacin at 5pm the evening before. Now the challenge would be covering the cost of it for clients Dr Daley said.
The sessions were not taped cause of upcoming possible/probable changes which would be an outcome of the American Thoracic Society and Infectious Disease Society along with 2 groups of European Specialists. They are in process of updating the 2006 “Diagnosis, Treatment and Prevention of NTM Infection” document.Dr Aksamit from Mayo was on the 2006 panel and no doubt continues.
Amy Leitman from NTMINFO and research reviewed educational resources….and announced that the group along with Un of Texas Health Science Center,Tyler will have on May 17, 2019 at the Gaylord Texan Resort in Grapevine Texas, a conference for Physicians and Patients.
The pamphlet on NTM by this group was updated in 2018 and is free to whoever asks. Contact at 3056676461 ex26 or ntmmail@ntminfo.org or http://www.ntminfo.org.
She has developed a training program to prepare leaders of NTM support groups.
She encouraged folks to let her know about ideas for workshops etc.
During this conference, a need for her group was identified: to connect with Pharmacists to familiarize them with NTM treatment protocols . One attendee was told incorrectly by local pharmacist the timing of when to take the 3 antibiotics.

Dr Ashwin Basavaraj MD Ass, Director from NYU’s Bronchiectasis Program spoke on “Overview of NTM and Bronchiectasis”. Reviewed statistics which are familiar to us….the increasing numbers and cost of Rx of Bronchiectasis. In 2001…the cost of care of person with Bronchiectasis was $13244….more than heart disease, and COPD.
He honed in on the significance of GERD on respiratory conditions and especially Bronchiectasis. Commented that many patients with GERD lack symptoms of heartburn or regurgitation.
CDC study which included results from 33 state laboratories “ suggests an increase in NTM in the US”….says diagnostic capabilities are improved. Excellent presentation….if I lived in NYC, he would be an Dr to have.
I will continue in another email. Terri aka tdrell

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@tdrell

@jaejack and others….if you can afford it….and if help is available for when you are on the Meds ( or actually at any time) get the help. You can always cancel. On August 25th I was walking into local grocery and managed to fall headfirst onto entire body when tip of shoe caught on a lip of sidewalk (uneven).
Replaced hips fine….did not hit head but face got road rash as they called it….but CAT scans revealed fractured ribs most of left side….2 on right. I opted to go home. Husband tried to be helpful but …… a dear chum who was a nurse insisted on coming and helping. What a difference!!! So I really think getting proper assistance at critical times is invaluable. Different scenarios with taking the Meds but having “help” is so comforting when we are under stress.tdrell

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Hmm…I am on the big three too, same dose, and fell four times this summer. The last time I needed stitches in my knee. I have been attributing the falls to my normal klutziness. Now I wonder if part of it may be due to the drugs. My metal hip on that side was OK too.

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@tdrell

@windwalker Terri….yes attended NTM workshop for patients and families in SEpt at NJH in DEnver. It was exciting to hear the announcement that FDA had approved use of the inhaled liposomal Amikacin at 5pm the evening before. Now the challenge would be covering the cost of it for clients Dr Daley said.
The sessions were not taped cause of upcoming possible/probable changes which would be an outcome of the American Thoracic Society and Infectious Disease Society along with 2 groups of European Specialists. They are in process of updating the 2006 “Diagnosis, Treatment and Prevention of NTM Infection” document.Dr Aksamit from Mayo was on the 2006 panel and no doubt continues.
Amy Leitman from NTMINFO and research reviewed educational resources….and announced that the group along with Un of Texas Health Science Center,Tyler will have on May 17, 2019 at the Gaylord Texan Resort in Grapevine Texas, a conference for Physicians and Patients.
The pamphlet on NTM by this group was updated in 2018 and is free to whoever asks. Contact at 3056676461 ex26 or ntmmail@ntminfo.org or http://www.ntminfo.org.
She has developed a training program to prepare leaders of NTM support groups.
She encouraged folks to let her know about ideas for workshops etc.
During this conference, a need for her group was identified: to connect with Pharmacists to familiarize them with NTM treatment protocols . One attendee was told incorrectly by local pharmacist the timing of when to take the 3 antibiotics.

Dr Ashwin Basavaraj MD Ass, Director from NYU’s Bronchiectasis Program spoke on “Overview of NTM and Bronchiectasis”. Reviewed statistics which are familiar to us….the increasing numbers and cost of Rx of Bronchiectasis. In 2001…the cost of care of person with Bronchiectasis was $13244….more than heart disease, and COPD.
He honed in on the significance of GERD on respiratory conditions and especially Bronchiectasis. Commented that many patients with GERD lack symptoms of heartburn or regurgitation.
CDC study which included results from 33 state laboratories “ suggests an increase in NTM in the US”….says diagnostic capabilities are improved. Excellent presentation….if I lived in NYC, he would be an Dr to have.
I will continue in another email. Terri aka tdrell

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@tdrell thank you so much for that info Terry, fantastic!

Liked by tdrell

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@tdrell

@windwalker Terri….yes attended NTM workshop for patients and families in SEpt at NJH in DEnver. It was exciting to hear the announcement that FDA had approved use of the inhaled liposomal Amikacin at 5pm the evening before. Now the challenge would be covering the cost of it for clients Dr Daley said.
The sessions were not taped cause of upcoming possible/probable changes which would be an outcome of the American Thoracic Society and Infectious Disease Society along with 2 groups of European Specialists. They are in process of updating the 2006 “Diagnosis, Treatment and Prevention of NTM Infection” document.Dr Aksamit from Mayo was on the 2006 panel and no doubt continues.
Amy Leitman from NTMINFO and research reviewed educational resources….and announced that the group along with Un of Texas Health Science Center,Tyler will have on May 17, 2019 at the Gaylord Texan Resort in Grapevine Texas, a conference for Physicians and Patients.
The pamphlet on NTM by this group was updated in 2018 and is free to whoever asks. Contact at 3056676461 ex26 or ntmmail@ntminfo.org or http://www.ntminfo.org.
She has developed a training program to prepare leaders of NTM support groups.
She encouraged folks to let her know about ideas for workshops etc.
During this conference, a need for her group was identified: to connect with Pharmacists to familiarize them with NTM treatment protocols . One attendee was told incorrectly by local pharmacist the timing of when to take the 3 antibiotics.

Dr Ashwin Basavaraj MD Ass, Director from NYU’s Bronchiectasis Program spoke on “Overview of NTM and Bronchiectasis”. Reviewed statistics which are familiar to us….the increasing numbers and cost of Rx of Bronchiectasis. In 2001…the cost of care of person with Bronchiectasis was $13244….more than heart disease, and COPD.
He honed in on the significance of GERD on respiratory conditions and especially Bronchiectasis. Commented that many patients with GERD lack symptoms of heartburn or regurgitation.
CDC study which included results from 33 state laboratories “ suggests an increase in NTM in the US”….says diagnostic capabilities are improved. Excellent presentation….if I lived in NYC, he would be an Dr to have.
I will continue in another email. Terri aka tdrell

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@tdrell Thank you for the re-cap on that seminar. I am hoping more awareness on our disease will ensue; we desperately need it.

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@beverly1945

I agree I’m newly diagnosed also no antibiotics going back in Nov

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@beverly1945 Hey Beverly! How are you feeling these days? What are you up to?

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@tdrell

@jaejack and others….if you can afford it….and if help is available for when you are on the Meds ( or actually at any time) get the help. You can always cancel. On August 25th I was walking into local grocery and managed to fall headfirst onto entire body when tip of shoe caught on a lip of sidewalk (uneven).
Replaced hips fine….did not hit head but face got road rash as they called it….but CAT scans revealed fractured ribs most of left side….2 on right. I opted to go home. Husband tried to be helpful but …… a dear chum who was a nurse insisted on coming and helping. What a difference!!! So I really think getting proper assistance at critical times is invaluable. Different scenarios with taking the Meds but having “help” is so comforting when we are under stress.tdrell

Jump to this post

@tdrell Hi Terri. I missed this post about your fall somehow. Maybe I was in evacuation mode or something. Are you all better? I hope so. As for hiring help, I totally agree. I just had a housekeeper come in and do a deep cleaning on my house and organize my closets. There is NO way I could have done all of that. I feel like I am functioning better with things in order.

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