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long term IV therapy for mycobacteria

W

windex125

Guest
ej what went wrong with the port being placed? where did they place it? only if you want to share. but I know we all gave you postive feedback on that one. Sometimes it takes some time for you and yr. body to adjust, it feels weird in the beginning, but I think most of us are happy to have them. I am sorry to hear about yr. MAC I've been doing that battle for yrs. Yr. treatment however sounds very agressive and tiring, it may work out that after a few mts, you will be able to cut back. Also we all get different reactions/side effects let yr. body tell you/blood work as well. I always get quite depressed when I hear IV's but I don't think I've ever done longer than 3mts. You sound very upset to me. Please try to calm down and know that you are doing what comes natural to take care of yourself. Alot of times what the doctor puts out there is sometimes changed or you get better quicker. You can IM me if you would like. Pat 55/CF
 

ej0820

New member
My port placement went so crappy for me! I know, everyone got me so excited to get a port and this weekend had me angrier than ever...not at you guys, at the surgeon and the docs involved. Things are working for the better with it, though.

First of all, the surgeon that did the placement was sooo rude. The day before the placement, he came into my room and was not receptive to any of my questions or concerns. He looked at me and said, "We're putting in a port and of course there are risks, as with everything. For example, when you fly a plane, sometimes it's delayed, sometimes it's just fine, and sometimes everybody dies."--excuse me?? That comment freaked my fiancee out way more than it did me, but it was not necessary. I later asked him about pain post-op. I asked what to expect. Agony? Irritation? The resident with him said I wouldn't wake up wanting my arm gone and he then said to me, "It's no big deal. It will just be like a really bad PMS day."--EXCUSE ME?? That comment had me furious all weekend long. I was told this surgeon was a good surgeon, though, so I didn't request a different one.

The day of the placement, my CF doc specifically requested I come back from surgery accessed. I told three people in the OR, in addition to the surgeon, to make sure that they accessed me while I was still under. I woke up NOT accessed and was told "We don't do that down here."

For the next two days, I was visited by over 10 people to try to access my port. I had oncology nurses, IV team nurses, CF nurses, and a few others that often access ports. It took three people at one time just to find where my port was--I later learned that it is so hard to find because he put a pediatric port in me. I'm 25 years old and am not a tiny person. An adult size would be perfect for me. One nurse actually bent 2 needles trying to access my port. Because no one could access it and I had to start IVs, I had to go all weekend long continuously getting peripheral IVs. I blew 6 IVs in two days. My 6th IV had me screaming and I finally flat out refused any more. I was so angry because the reason I got a port was to avoid all of this. One nurse was able to get it accessed but with no blood return, so she deaccessed it (which I understood, she was concerned).

Things are looking up, though. I had two xrays done of my port after being visited by the surgeon again. It's still where it's supposed to be. I went down to radiology to get a mediport dye test done, to see how it's flushing and why there's no blood return. Before the radiologist put in the dye, he got a blood return. That almost made me cry-I told him I wanted to kiss him, lol. So far today, after going to radiology, my port is working ok...I'm still a little apprehensive about it-I immediately expect the worst when the nurse comes in to flush it and hook up a med.

I'm mixed about the placement. It's on my left side, which is what I wanted. It's right above my boob, almost in it, lol. The surgeon told me he put it there, lower than he usually places it because he remembered me mentioning I was nervous that I would be really self conscious about how visible it might be. I didn't even think he was listening when I said that. I wonder, though, that where it is might cause problems in the future when it needs to be accessed? Who knows, though...that could happen even if everything went 100% exactly the way it was supposed to go.

I still have hope that it will be great in the end. I'm still so very grateful for all the positive feedback I got from you guys, even though this initially went in the opposite direction. Now that my port is working properly, I'm seeing the benefits and am getting excited about it again. Like I said, I'm still a little apprehensive, wondering if the ball will drop again, but I'm sure the longer I have the port, the more these feelings will subside.

Sorry such a long post. I was going to post it in a new topic, but then just decided to reply here.
<3
 

ej0820

New member
My port placement went so crappy for me! I know, everyone got me so excited to get a port and this weekend had me angrier than ever...not at you guys, at the surgeon and the docs involved. Things are working for the better with it, though.

First of all, the surgeon that did the placement was sooo rude. The day before the placement, he came into my room and was not receptive to any of my questions or concerns. He looked at me and said, "We're putting in a port and of course there are risks, as with everything. For example, when you fly a plane, sometimes it's delayed, sometimes it's just fine, and sometimes everybody dies."--excuse me?? That comment freaked my fiancee out way more than it did me, but it was not necessary. I later asked him about pain post-op. I asked what to expect. Agony? Irritation? The resident with him said I wouldn't wake up wanting my arm gone and he then said to me, "It's no big deal. It will just be like a really bad PMS day."--EXCUSE ME?? That comment had me furious all weekend long. I was told this surgeon was a good surgeon, though, so I didn't request a different one.

The day of the placement, my CF doc specifically requested I come back from surgery accessed. I told three people in the OR, in addition to the surgeon, to make sure that they accessed me while I was still under. I woke up NOT accessed and was told "We don't do that down here."

For the next two days, I was visited by over 10 people to try to access my port. I had oncology nurses, IV team nurses, CF nurses, and a few others that often access ports. It took three people at one time just to find where my port was--I later learned that it is so hard to find because he put a pediatric port in me. I'm 25 years old and am not a tiny person. An adult size would be perfect for me. One nurse actually bent 2 needles trying to access my port. Because no one could access it and I had to start IVs, I had to go all weekend long continuously getting peripheral IVs. I blew 6 IVs in two days. My 6th IV had me screaming and I finally flat out refused any more. I was so angry because the reason I got a port was to avoid all of this. One nurse was able to get it accessed but with no blood return, so she deaccessed it (which I understood, she was concerned).

Things are looking up, though. I had two xrays done of my port after being visited by the surgeon again. It's still where it's supposed to be. I went down to radiology to get a mediport dye test done, to see how it's flushing and why there's no blood return. Before the radiologist put in the dye, he got a blood return. That almost made me cry-I told him I wanted to kiss him, lol. So far today, after going to radiology, my port is working ok...I'm still a little apprehensive about it-I immediately expect the worst when the nurse comes in to flush it and hook up a med.

I'm mixed about the placement. It's on my left side, which is what I wanted. It's right above my boob, almost in it, lol. The surgeon told me he put it there, lower than he usually places it because he remembered me mentioning I was nervous that I would be really self conscious about how visible it might be. I didn't even think he was listening when I said that. I wonder, though, that where it is might cause problems in the future when it needs to be accessed? Who knows, though...that could happen even if everything went 100% exactly the way it was supposed to go.

I still have hope that it will be great in the end. I'm still so very grateful for all the positive feedback I got from you guys, even though this initially went in the opposite direction. Now that my port is working properly, I'm seeing the benefits and am getting excited about it again. Like I said, I'm still a little apprehensive, wondering if the ball will drop again, but I'm sure the longer I have the port, the more these feelings will subside.

Sorry such a long post. I was going to post it in a new topic, but then just decided to reply here.
<3
 

ej0820

New member
My port placement went so crappy for me! I know, everyone got me so excited to get a port and this weekend had me angrier than ever...not at you guys, at the surgeon and the docs involved. Things are working for the better with it, though.
<br />
<br />First of all, the surgeon that did the placement was sooo rude. The day before the placement, he came into my room and was not receptive to any of my questions or concerns. He looked at me and said, "We're putting in a port and of course there are risks, as with everything. For example, when you fly a plane, sometimes it's delayed, sometimes it's just fine, and sometimes everybody dies."--excuse me?? That comment freaked my fiancee out way more than it did me, but it was not necessary. I later asked him about pain post-op. I asked what to expect. Agony? Irritation? The resident with him said I wouldn't wake up wanting my arm gone and he then said to me, "It's no big deal. It will just be like a really bad PMS day."--EXCUSE ME?? That comment had me furious all weekend long. I was told this surgeon was a good surgeon, though, so I didn't request a different one.
<br />
<br />The day of the placement, my CF doc specifically requested I come back from surgery accessed. I told three people in the OR, in addition to the surgeon, to make sure that they accessed me while I was still under. I woke up NOT accessed and was told "We don't do that down here."
<br />
<br />For the next two days, I was visited by over 10 people to try to access my port. I had oncology nurses, IV team nurses, CF nurses, and a few others that often access ports. It took three people at one time just to find where my port was--I later learned that it is so hard to find because he put a pediatric port in me. I'm 25 years old and am not a tiny person. An adult size would be perfect for me. One nurse actually bent 2 needles trying to access my port. Because no one could access it and I had to start IVs, I had to go all weekend long continuously getting peripheral IVs. I blew 6 IVs in two days. My 6th IV had me screaming and I finally flat out refused any more. I was so angry because the reason I got a port was to avoid all of this. One nurse was able to get it accessed but with no blood return, so she deaccessed it (which I understood, she was concerned).
<br />
<br />Things are looking up, though. I had two xrays done of my port after being visited by the surgeon again. It's still where it's supposed to be. I went down to radiology to get a mediport dye test done, to see how it's flushing and why there's no blood return. Before the radiologist put in the dye, he got a blood return. That almost made me cry-I told him I wanted to kiss him, lol. So far today, after going to radiology, my port is working ok...I'm still a little apprehensive about it-I immediately expect the worst when the nurse comes in to flush it and hook up a med.
<br />
<br />I'm mixed about the placement. It's on my left side, which is what I wanted. It's right above my boob, almost in it, lol. The surgeon told me he put it there, lower than he usually places it because he remembered me mentioning I was nervous that I would be really self conscious about how visible it might be. I didn't even think he was listening when I said that. I wonder, though, that where it is might cause problems in the future when it needs to be accessed? Who knows, though...that could happen even if everything went 100% exactly the way it was supposed to go.
<br />
<br />I still have hope that it will be great in the end. I'm still so very grateful for all the positive feedback I got from you guys, even though this initially went in the opposite direction. Now that my port is working properly, I'm seeing the benefits and am getting excited about it again. Like I said, I'm still a little apprehensive, wondering if the ball will drop again, but I'm sure the longer I have the port, the more these feelings will subside.
<br />
<br />Sorry such a long post. I was going to post it in a new topic, but then just decided to reply here.
<br /><3
 
W

windex125

Guest
I am quite sure I have pedatric port as well it is actually a double, and my nurse said she usually has seen these on younger people, but it works fine. As for the mentality of those doctors, sometimes I think they think by making smart ass remarks we are going to be more relaxed well guess what we are not, this is a serious issue for us. So I want to say forgive them in the long run? I am glad you posted again before I went to bed, I just wanted to know that after all was said and done it was accessed and working. Bless you for yr.strength it will all work out I am sure. Pat 55-CF
 
W

windex125

Guest
I am quite sure I have pedatric port as well it is actually a double, and my nurse said she usually has seen these on younger people, but it works fine. As for the mentality of those doctors, sometimes I think they think by making smart ass remarks we are going to be more relaxed well guess what we are not, this is a serious issue for us. So I want to say forgive them in the long run? I am glad you posted again before I went to bed, I just wanted to know that after all was said and done it was accessed and working. Bless you for yr.strength it will all work out I am sure. Pat 55-CF
 
W

windex125

Guest
I am quite sure I have pedatric port as well it is actually a double, and my nurse said she usually has seen these on younger people, but it works fine. As for the mentality of those doctors, sometimes I think they think by making smart ass remarks we are going to be more relaxed well guess what we are not, this is a serious issue for us. So I want to say forgive them in the long run? I am glad you posted again before I went to bed, I just wanted to know that after all was said and done it was accessed and working. Bless you for yr.strength it will all work out I am sure. Pat 55-CF
 

theLostMiler

New member
I have done long term iv treatment for myco (and b. cep). I havent ever done a year, straight but have done roughly 6 months at a time (max)... but I have done tiger, cefoxitin and zyvox (though oral form) for my myco abs.

Zyvox after 4 months gave me peripheral neuropathy the first time, the second time (running out of options so took it w/ vit b6), I did 6 weeks of it and had no problems.

lets see, the first time I did cefoxitin at home that I remember what the drug was (old enough to care haha,) was in the iv push form, every 6 hours though... so i did 12 am, 6 am, 12 pm, 6 pm.

This last time I did it, it was luckily my only iv, but it was every 4 hours, and i did the pump. Basically it "can" be worn as a fanny, but really its like a little purse (roughly the size of a brick as far as dimensions go), you have your extra tubing coming out so you can set it down and such... you just have a leash. I always wore it over my shoulder and I just set it on the ground next to the bed when i slept (I also had oxygen and feedings going on so I looked like a robot anyways haha). I had this bag for I think a little over 3 months and after a while, its just part of you.
When I finally stopped ivs, it took me a while to not instinctively reach for it whenever I got up to walk around etc.
For me, I think if you are by yourself, you cant really do 4 hours b/c you need sleep, especially REM which happens like in the middle of the night so you would be getting up to do ivs right in the middle of the important part of sleep.

Where are you located at also? My infectious disease doc, who isnt my cf doc, has called National Jewish before to get advice on my case... you might see if your docs want to do that b/c national jewish is the expert in TB.

My treatment plans often go on how I am feeling and are often not all the way planned out... meaning we start with 6 weeks or something then depending on sputum, how im feeling, etc... we may add more or decide to end the treatment then.

Oh and I do have a port too, what I did b/c those aquaguards are expensive if you have to buy them and my home health care provider didnt supply them so I would have had to buy out of pocket... I just take a bath and gently lean back under the faucet... i keep a towel right there so if any water ran down the front, I could stop it. I really try to not get water on it and always was good with my piccs, but there were a couple times it got wet and if so, I just called my nurse and had her come do a dressing change. You should know how to deaccess it yourself (I didn trea every post so not sure if you already know that) so you can take it out if it does get like super soaking wet.
Anyways, b/c the pump is 24 hours, I never showered w/o it accessed so there was no way I was taping it every single day for 3 months... so thats why I just learn to be careful. It helps if you have a handle shower head too.
 

theLostMiler

New member
I have done long term iv treatment for myco (and b. cep). I havent ever done a year, straight but have done roughly 6 months at a time (max)... but I have done tiger, cefoxitin and zyvox (though oral form) for my myco abs.

Zyvox after 4 months gave me peripheral neuropathy the first time, the second time (running out of options so took it w/ vit b6), I did 6 weeks of it and had no problems.

lets see, the first time I did cefoxitin at home that I remember what the drug was (old enough to care haha,) was in the iv push form, every 6 hours though... so i did 12 am, 6 am, 12 pm, 6 pm.

This last time I did it, it was luckily my only iv, but it was every 4 hours, and i did the pump. Basically it "can" be worn as a fanny, but really its like a little purse (roughly the size of a brick as far as dimensions go), you have your extra tubing coming out so you can set it down and such... you just have a leash. I always wore it over my shoulder and I just set it on the ground next to the bed when i slept (I also had oxygen and feedings going on so I looked like a robot anyways haha). I had this bag for I think a little over 3 months and after a while, its just part of you.
When I finally stopped ivs, it took me a while to not instinctively reach for it whenever I got up to walk around etc.
For me, I think if you are by yourself, you cant really do 4 hours b/c you need sleep, especially REM which happens like in the middle of the night so you would be getting up to do ivs right in the middle of the important part of sleep.

Where are you located at also? My infectious disease doc, who isnt my cf doc, has called National Jewish before to get advice on my case... you might see if your docs want to do that b/c national jewish is the expert in TB.

My treatment plans often go on how I am feeling and are often not all the way planned out... meaning we start with 6 weeks or something then depending on sputum, how im feeling, etc... we may add more or decide to end the treatment then.

Oh and I do have a port too, what I did b/c those aquaguards are expensive if you have to buy them and my home health care provider didnt supply them so I would have had to buy out of pocket... I just take a bath and gently lean back under the faucet... i keep a towel right there so if any water ran down the front, I could stop it. I really try to not get water on it and always was good with my piccs, but there were a couple times it got wet and if so, I just called my nurse and had her come do a dressing change. You should know how to deaccess it yourself (I didn trea every post so not sure if you already know that) so you can take it out if it does get like super soaking wet.
Anyways, b/c the pump is 24 hours, I never showered w/o it accessed so there was no way I was taping it every single day for 3 months... so thats why I just learn to be careful. It helps if you have a handle shower head too.
 

theLostMiler

New member
I have done long term iv treatment for myco (and b. cep). I havent ever done a year, straight but have done roughly 6 months at a time (max)... but I have done tiger, cefoxitin and zyvox (though oral form) for my myco abs.
<br />
<br />Zyvox after 4 months gave me peripheral neuropathy the first time, the second time (running out of options so took it w/ vit b6), I did 6 weeks of it and had no problems.
<br />
<br />lets see, the first time I did cefoxitin at home that I remember what the drug was (old enough to care haha,) was in the iv push form, every 6 hours though... so i did 12 am, 6 am, 12 pm, 6 pm.
<br />
<br />This last time I did it, it was luckily my only iv, but it was every 4 hours, and i did the pump. Basically it "can" be worn as a fanny, but really its like a little purse (roughly the size of a brick as far as dimensions go), you have your extra tubing coming out so you can set it down and such... you just have a leash. I always wore it over my shoulder and I just set it on the ground next to the bed when i slept (I also had oxygen and feedings going on so I looked like a robot anyways haha). I had this bag for I think a little over 3 months and after a while, its just part of you.
<br />When I finally stopped ivs, it took me a while to not instinctively reach for it whenever I got up to walk around etc.
<br />For me, I think if you are by yourself, you cant really do 4 hours b/c you need sleep, especially REM which happens like in the middle of the night so you would be getting up to do ivs right in the middle of the important part of sleep.
<br />
<br />Where are you located at also? My infectious disease doc, who isnt my cf doc, has called National Jewish before to get advice on my case... you might see if your docs want to do that b/c national jewish is the expert in TB.
<br />
<br />My treatment plans often go on how I am feeling and are often not all the way planned out... meaning we start with 6 weeks or something then depending on sputum, how im feeling, etc... we may add more or decide to end the treatment then.
<br />
<br />Oh and I do have a port too, what I did b/c those aquaguards are expensive if you have to buy them and my home health care provider didnt supply them so I would have had to buy out of pocket... I just take a bath and gently lean back under the faucet... i keep a towel right there so if any water ran down the front, I could stop it. I really try to not get water on it and always was good with my piccs, but there were a couple times it got wet and if so, I just called my nurse and had her come do a dressing change. You should know how to deaccess it yourself (I didn trea every post so not sure if you already know that) so you can take it out if it does get like super soaking wet.
<br />Anyways, b/c the pump is 24 hours, I never showered w/o it accessed so there was no way I was taping it every single day for 3 months... so thats why I just learn to be careful. It helps if you have a handle shower head too.
 
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