1. < Infectious Diseases

M.A.C.

Posted by psmosby @psmosby, Mar 29, 2022

MAC disease located and contained in left leg after hip and femur replacement. IV antibiotics are not working with infection. Anyone with cute?

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Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 29, 2022

Hello, I see you are new to Mayo Connect, we are a community of people living with a variety of conditions and diseases, who try to help one another on our journeys by sharing experiences.
Can you tell us a little more about the issue you are having, and when the infection occurred in relation to the surgery?
MAC (mycobacterium avium complex) is fairly uncommon after surgery - it usually likes to hide in our lungs. But there are some other mycobacteria and infectious organisms that can attack - and can often be difficult to cure. You can probably find the right people to connect with if we have more information and can put this discussion into the right place.
Sue

REPLY
1 reply
psmosby | @psmosby | Mar 30, 2022
In reply to @sueinmn "Hello, I see you are new to Mayo Connect, we are a community of people living..." + (show)
@sueinmn

Hello, I see you are new to Mayo Connect, we are a community of people living with a variety of conditions and diseases, who try to help one another on our journeys by sharing experiences.
Can you tell us a little more about the issue you are having, and when the infection occurred in relation to the surgery?
MAC (mycobacterium avium complex) is fairly uncommon after surgery - it usually likes to hide in our lungs. But there are some other mycobacteria and infectious organisms that can attack - and can often be difficult to cure. You can probably find the right people to connect with if we have more information and can put this discussion into the right place.
Sue

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Thank you Sue!
Robbie has a complete hip/femur replacement in Jan/2020 . She had fallen resulting in shattering both, with no open wound.
She had surgery at Wellington Hosp, by Bone and Joint of Wellington. I have lots of pics! But we noticed the leg angry and possible infected approximately Post-Op. After surgery no medicine was given. Robbie went in for additional surgery Feb2020, six weeks from her fall, they advised they had put a antibiotic spacer in her leg, and she went on Homehealth IV very strong antibiotics... ugh , which were administered at home with Dr Larry Bush, as part of the team of Bone/Joint trying to kill the MAC infection. The antibiotics themselves have been followed with much sickness, nause, diarrhea, weight loss, as you can imagine, it felt like cancer medicine. The summer of 2020 Dr Bush sent a team to the house every 12 hours Rob was enduring this medication, which resulted in multiple seizures (10) at mid July!
She stayed in Hosp for 3 weeks!
This went on thru Dec 2020 when the leg itself started to have big abscesses 2 sinus’s which dripped blood and puss!
Dr HART of Bone n Joint referred Rob to Cleveland Clinic, which she was introduced to new Ortho Surgeons...this by the way is during a Pandemic..by May 2021, she had 2 surgeries at CCF in Weston! Followed by more IV meds from infectious disease team!!
She suffered 2 debridements that summer. The disease sits on the titanium... resulting in the skin not growing..so they cut the skin back hoping it will heal. It hasn’t healed.
It’s 2022 and Rob has problems walking even thou the leg is weight bearing. The IV medicine keeps her drowsy and ill . She’s on 2 diff kinds of antibiotics every 12 hours, administered by me or my other caregiver living here. It’s a lot of work, we feed her keep her moving, but it’s major heart ache we feel! They discuss amputation of the Leg... and that’s way over our heads. They plan on 3-6 months of IV meds... and it doesn’t seem to be working. I’ve read a lot about MAC and yes it can be in lungs, but this is isolated to her very long leg.
Rob is 6’1 and 125 pounds...
any input out there... more prayers!
REPLY
1 reply
psmosby | @psmosby | Mar 30, 2022
In reply to @psmosby "Thank you Sue! Robbie has a complete hip/femur replacement in Jan/2020 . She had fallen resulting..." + (show)
@psmosby

Thank you Sue!
Robbie has a complete hip/femur replacement in Jan/2020 . She had fallen resulting in shattering both, with no open wound.
She had surgery at Wellington Hosp, by Bone and Joint of Wellington. I have lots of pics! But we noticed the leg angry and possible infected approximately Post-Op. After surgery no medicine was given. Robbie went in for additional surgery Feb2020, six weeks from her fall, they advised they had put a antibiotic spacer in her leg, and she went on Homehealth IV very strong antibiotics... ugh , which were administered at home with Dr Larry Bush, as part of the team of Bone/Joint trying to kill the MAC infection. The antibiotics themselves have been followed with much sickness, nause, diarrhea, weight loss, as you can imagine, it felt like cancer medicine. The summer of 2020 Dr Bush sent a team to the house every 12 hours Rob was enduring this medication, which resulted in multiple seizures (10) at mid July!
She stayed in Hosp for 3 weeks!
This went on thru Dec 2020 when the leg itself started to have big abscesses 2 sinus’s which dripped blood and puss!
Dr HART of Bone n Joint referred Rob to Cleveland Clinic, which she was introduced to new Ortho Surgeons...this by the way is during a Pandemic..by May 2021, she had 2 surgeries at CCF in Weston! Followed by more IV meds from infectious disease team!!
She suffered 2 debridements that summer. The disease sits on the titanium... resulting in the skin not growing..so they cut the skin back hoping it will heal. It hasn’t healed.
It’s 2022 and Rob has problems walking even thou the leg is weight bearing. The IV medicine keeps her drowsy and ill . She’s on 2 diff kinds of antibiotics every 12 hours, administered by me or my other caregiver living here. It’s a lot of work, we feed her keep her moving, but it’s major heart ache we feel! They discuss amputation of the Leg... and that’s way over our heads. They plan on 3-6 months of IV meds... and it doesn’t seem to be working. I’ve read a lot about MAC and yes it can be in lungs, but this is isolated to her very long leg.
Rob is 6’1 and 125 pounds...
any input out there... more prayers!

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These are recent pictures she had a surgery on Feb 11, 2022 at CCF!
Does Mayo have infectious disease department that has a cure? For this type of infection? Please Share.
Thank you Pam Mosby

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 30, 2022

Hers is the link for requesting an appointment at Mayo. http://mayocl.in/1mtmR63

This Mayo Connect forum is a place for people with similar medical conditions to meet and share experiences. I think what we have here is a situation for medical consultation, which is beyond our capability.
Sue

REPLY
1 reply
psmosby | @psmosby | Mar 30, 2022
In reply to @sueinmn "Hers is the link for requesting an appointment at Mayo. http://mayocl.in/1mtmR63 This Mayo Connect forum is..." + (show)
@sueinmn

Hers is the link for requesting an appointment at Mayo. http://mayocl.in/1mtmR63

This Mayo Connect forum is a place for people with similar medical conditions to meet and share experiences. I think what we have here is a situation for medical consultation, which is beyond our capability.
Sue

Jump to this post

Thank you for your Honesty... my sister lives in the twin cities, and she believes in the Mayo located in Rochester, Mn!
I would of brought her there, but the closest is in Jacksonville Fl.
But we do do crazy things for our loved ones. Thank you for listening, and guiding me to the Next Step.
Sincerely
Pam
I think Lifetime is looking for a new personal story!
💖💖💖

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