NON-TUBERCULOUS MYCOBACTERIUM..?

[pjspiegle]

I don't have a picture for you, but my son has one and you cannot see it.

You have to feel for it to know its there and we know where to feel because of a small scar from the incision, but the port itself isn't visible to the naked eye, you have to know its there and still have to feel for it to find it.

Hope that helps.

 

[pjspiegle]

I don't have a picture for you, but my son has one and you cannot see it.

You have to feel for it to know its there and we know where to feel because of a small scar from the incision, but the port itself isn't visible to the naked eye, you have to know its there and still have to feel for it to find it.

Hope that helps.

 

[pjspiegle]

I don't have a picture for you, but my son has one and you cannot see it.

You have to feel for it to know its there and we know where to feel because of a small scar from the incision, but the port itself isn't visible to the naked eye, you have to know its there and still have to feel for it to find it.

Hope that helps.

 

[pjspiegle]

I don't have a picture for you, but my son has one and you cannot see it.

You have to feel for it to know its there and we know where to feel because of a small scar from the incision, but the port itself isn't visible to the naked eye, you have to know its there and still have to feel for it to find it.

Hope that helps.

 

[pjspiegle]

I don't have a picture for you, but my son has one and you cannot see it.
<br />
<br />You have to feel for it to know its there and we know where to feel because of a small scar from the incision, but the port itself isn't visible to the naked eye, you have to know its there and still have to feel for it to find it.
<br />
<br />Hope that helps.

 

[Landy]

Try this:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.emsresponder.com/article/photos/1157486260941_120_6.jpg">http://www.emsresponder.com/ar...157486260941_120_6.jpg</a>

 

[Landy]

Try this:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.emsresponder.com/article/photos/1157486260941_120_6.jpg">http://www.emsresponder.com/ar...157486260941_120_6.jpg</a>

 

[Landy]

Try this:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.emsresponder.com/article/photos/1157486260941_120_6.jpg">http://www.emsresponder.com/ar...157486260941_120_6.jpg</a>

 

[Landy]

Try this:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.emsresponder.com/article/photos/1157486260941_120_6.jpg">http://www.emsresponder.com/ar...157486260941_120_6.jpg</a>

 

[Landy]

Try this:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.emsresponder.com/article/photos/1157486260941_120_6.jpg">http://www.emsresponder.com/ar...157486260941_120_6.jpg</a>

 

[donin]

Thanks so much. He had the portacath put in. He has been having some trouble with it - they can't always draw blood. He had a similar problem back in May when he had a picc line. At that time it turned out that he had developed multiple blood clots, which prolonged his admission. I hope that it is not clots this time.

He will be on toxic antibiotics for 6 months (it is mycobacterium abscessus). They will not be able to irradicate the bacteria. The side effects of the antibiotics include hearing loss, vestibular dysfunction (constant dizziness), and kidney failure. Unfortunately the side effects are cumulative, so taking a med-vacation does not decrease the chance of developing side effects. The worst part is that he will not be a good lung transplant candidate as this bacteria invades the soft tissue around the lungs. I always thought that when he got sick I would be able to give him a lobe.

 

[donin]

Thanks so much. He had the portacath put in. He has been having some trouble with it - they can't always draw blood. He had a similar problem back in May when he had a picc line. At that time it turned out that he had developed multiple blood clots, which prolonged his admission. I hope that it is not clots this time.

He will be on toxic antibiotics for 6 months (it is mycobacterium abscessus). They will not be able to irradicate the bacteria. The side effects of the antibiotics include hearing loss, vestibular dysfunction (constant dizziness), and kidney failure. Unfortunately the side effects are cumulative, so taking a med-vacation does not decrease the chance of developing side effects. The worst part is that he will not be a good lung transplant candidate as this bacteria invades the soft tissue around the lungs. I always thought that when he got sick I would be able to give him a lobe.

 

[donin]

Thanks so much. He had the portacath put in. He has been having some trouble with it - they can't always draw blood. He had a similar problem back in May when he had a picc line. At that time it turned out that he had developed multiple blood clots, which prolonged his admission. I hope that it is not clots this time.

He will be on toxic antibiotics for 6 months (it is mycobacterium abscessus). They will not be able to irradicate the bacteria. The side effects of the antibiotics include hearing loss, vestibular dysfunction (constant dizziness), and kidney failure. Unfortunately the side effects are cumulative, so taking a med-vacation does not decrease the chance of developing side effects. The worst part is that he will not be a good lung transplant candidate as this bacteria invades the soft tissue around the lungs. I always thought that when he got sick I would be able to give him a lobe.

 

[donin]

Thanks so much. He had the portacath put in. He has been having some trouble with it - they can't always draw blood. He had a similar problem back in May when he had a picc line. At that time it turned out that he had developed multiple blood clots, which prolonged his admission. I hope that it is not clots this time.

He will be on toxic antibiotics for 6 months (it is mycobacterium abscessus). They will not be able to irradicate the bacteria. The side effects of the antibiotics include hearing loss, vestibular dysfunction (constant dizziness), and kidney failure. Unfortunately the side effects are cumulative, so taking a med-vacation does not decrease the chance of developing side effects. The worst part is that he will not be a good lung transplant candidate as this bacteria invades the soft tissue around the lungs. I always thought that when he got sick I would be able to give him a lobe.

 

[donin]

Thanks so much. He had the portacath put in. He has been having some trouble with it - they can't always draw blood. He had a similar problem back in May when he had a picc line. At that time it turned out that he had developed multiple blood clots, which prolonged his admission. I hope that it is not clots this time.
<br />
<br />He will be on toxic antibiotics for 6 months (it is mycobacterium abscessus). They will not be able to irradicate the bacteria. The side effects of the antibiotics include hearing loss, vestibular dysfunction (constant dizziness), and kidney failure. Unfortunately the side effects are cumulative, so taking a med-vacation does not decrease the chance of developing side effects. The worst part is that he will not be a good lung transplant candidate as this bacteria invades the soft tissue around the lungs. I always thought that when he got sick I would be able to give him a lobe.

 

[juliepie]

Donin-

Is it MC or M. abscessus that your son has? You said one in your first post and the other above me... just wondering because I have one, and while each case is individual...

My lung transplant center has no problem listing me even though I am colonizing m. abscessus. If a doctor other than one at a transplant center told you that they can't do them on people with NTM infections, then I would strongly suggest seeking a different opinion. I was told that since mine is responsive to IV treatment it should not be a problem as long as we keep it under control (which just means going on antibiotics if I start to feel under-the-weather)

Good luck with the port... getting mine was one of the best medical decisions I've ever made! Hopefully your son will not be one of the small % of people who experience any of the side effects you have listed. I had some ringing in my ears after 8 weeks on amikacin, but it went away and a hearing test came back fine. Nausea is my only other side effect from the meds.

 

[juliepie]

Donin-

Is it MC or M. abscessus that your son has? You said one in your first post and the other above me... just wondering because I have one, and while each case is individual...

My lung transplant center has no problem listing me even though I am colonizing m. abscessus. If a doctor other than one at a transplant center told you that they can't do them on people with NTM infections, then I would strongly suggest seeking a different opinion. I was told that since mine is responsive to IV treatment it should not be a problem as long as we keep it under control (which just means going on antibiotics if I start to feel under-the-weather)

Good luck with the port... getting mine was one of the best medical decisions I've ever made! Hopefully your son will not be one of the small % of people who experience any of the side effects you have listed. I had some ringing in my ears after 8 weeks on amikacin, but it went away and a hearing test came back fine. Nausea is my only other side effect from the meds.

 

[juliepie]

Donin-

Is it MC or M. abscessus that your son has? You said one in your first post and the other above me... just wondering because I have one, and while each case is individual...

My lung transplant center has no problem listing me even though I am colonizing m. abscessus. If a doctor other than one at a transplant center told you that they can't do them on people with NTM infections, then I would strongly suggest seeking a different opinion. I was told that since mine is responsive to IV treatment it should not be a problem as long as we keep it under control (which just means going on antibiotics if I start to feel under-the-weather)

Good luck with the port... getting mine was one of the best medical decisions I've ever made! Hopefully your son will not be one of the small % of people who experience any of the side effects you have listed. I had some ringing in my ears after 8 weeks on amikacin, but it went away and a hearing test came back fine. Nausea is my only other side effect from the meds.

 

[juliepie]

Donin-

Is it MC or M. abscessus that your son has? You said one in your first post and the other above me... just wondering because I have one, and while each case is individual...

My lung transplant center has no problem listing me even though I am colonizing m. abscessus. If a doctor other than one at a transplant center told you that they can't do them on people with NTM infections, then I would strongly suggest seeking a different opinion. I was told that since mine is responsive to IV treatment it should not be a problem as long as we keep it under control (which just means going on antibiotics if I start to feel under-the-weather)

Good luck with the port... getting mine was one of the best medical decisions I've ever made! Hopefully your son will not be one of the small % of people who experience any of the side effects you have listed. I had some ringing in my ears after 8 weeks on amikacin, but it went away and a hearing test came back fine. Nausea is my only other side effect from the meds.

 

[juliepie]

Donin-
<br />
<br />Is it MC or M. abscessus that your son has? You said one in your first post and the other above me... just wondering because I have one, and while each case is individual...
<br />
<br />My lung transplant center has no problem listing me even though I am colonizing m. abscessus. If a doctor other than one at a transplant center told you that they can't do them on people with NTM infections, then I would strongly suggest seeking a different opinion. I was told that since mine is responsive to IV treatment it should not be a problem as long as we keep it under control (which just means going on antibiotics if I start to feel under-the-weather)
<br />
<br />Good luck with the port... getting mine was one of the best medical decisions I've ever made! Hopefully your son will not be one of the small % of people who experience any of the side effects you have listed. I had some ringing in my ears after 8 weeks on amikacin, but it went away and a hearing test came back fine. Nausea is my only other side effect from the meds.