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barbjh
@barbjh

Posts: 18
Joined: Apr 10, 2016

Frustrated

Posted by @barbjh, Mon, Jul 30 11:03pm

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!!

REPLY

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

Liked by jaejack

Has anyone else needed help at home while on the antibiotics? I’m off due to horrible side effects the last time… including “halutionations, extreme dizziness and foggy thinking”. I live alone most of the time. Am considering hiring someone to come twice a day when I go back on them in a couple of weeks. Thoughts/options so much welcome. Love

I experience the dizziness as well but not the rest.
I do have anxiety attacks though.

@jaejack

Has anyone else needed help at home while on the antibiotics? I’m off due to horrible side effects the last time… including “halutionations, extreme dizziness and foggy thinking”. I live alone most of the time. Am considering hiring someone to come twice a day when I go back on them in a couple of weeks. Thoughts/options so much welcome. Love

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@jajack. Yes having someone there is s good idea. I too have dizzy spells. And bouts of bring very emotional. These are very strong drugs. Does anyone else notice they are more emotionsl?

Liked by tdrell, 526laura

@hydrang3a

@jajack. Yes having someone there is s good idea. I too have dizzy spells. And bouts of bring very emotional. These are very strong drugs. Does anyone else notice they are more emotionsl?

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Thank u! I am more emotional but don’t know how much of it has to do with the “ unknown “ and how to get it all coordinated. Be interested in others as well. Thanks for reply

@jaejack

Has anyone else needed help at home while on the antibiotics? I’m off due to horrible side effects the last time… including “halutionations, extreme dizziness and foggy thinking”. I live alone most of the time. Am considering hiring someone to come twice a day when I go back on them in a couple of weeks. Thoughts/options so much welcome. Love

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@jaejack I also get the dizziness but think if comes from anxiety and not breathing correctly and I get foggy thinking but think I had this before I was on the meds, maby from the anxiety also.

Liked by 526laura

@hydrang3a

@jajack. Yes having someone there is s good idea. I too have dizzy spells. And bouts of bring very emotional. These are very strong drugs. Does anyone else notice they are more emotionsl?

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Hello@jajack. I too am on the big 3, and yes I do get some dizziness…did get more emotional the first 2-3 months and seems to have subsided

@hydrang3a

@jajack. Yes having someone there is s good idea. I too have dizzy spells. And bouts of bring very emotional. These are very strong drugs. Does anyone else notice they are more emotionsl?

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@jaejack I have mostly had fatigue. Which ones are you on? Sometimes they can change up two of them

I was on Ethambutol 1800mg, Rifampin 600mg, and Azithromycin 500 mg….. taking on Mon, Weds, Friday. I’ll see the Pulmonologist Thurs and then ID on Friday. Will see if they come up with different plan. TU so much!

@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

@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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@tdrell goodness! Broken/fractured ribs are a big ouch! I went a whole month once with two broken ribs and didn’t know why I hurt so badly until I saw them in the mirror sticking out of my back thirty days later. I used to come home from school and get right on the couch with a bag of frozen peas! Take care of yourself! So sorry that happened to you! I hate that as we age we trip on stupid things we wouldn’t have tripped on back in the day!

Liked by tdrell

@tdrell…Oh No! I'm so sorry to hear you fell and broke your ribs. They are bad enough, but coughing up mucus must be torture.Stay away from people and germs, please. Glad to hear you have a helpful friend.

Liked by tdrell

@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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@tdrell…hope your ribs are healing up and that you are feeling better. Kate

Liked by tdrell

@beverly1945

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

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Me too!

Liked by 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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