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3rd hospitalization in EIGHT months!!!

M

MCGrad2006

Guest
<em><strong>Update 2:  I am home.  I actually came home yesterday, Thursday.  The CF team came into my room around 1 and was like btw we are working on getting you home today.  I was like HUh?  I was under the impression that they were going to have to do Vanc levels again which would not have happened until the middle of the night.  But I guess the doctors will order testing for Sunday.  Right now I am doing Vanc over two and half hours!  ICK!  It is soooooo long. But it is because the dose is higher than I am used to so I wanted to make sure I could tolerate it.  No Problems yet so I think I will be calling the doctor to see if they can switch it to the one hour Intermate Ball.  </strong></em><em><strong>I am amazed at how exhausted I am coming home from the hospital.  I was feeling good while I was there yesterday and I had energy...but man riding home and then getting home, I was WIPED.  Overall I am feeling better, hopefully that means this is doing the trick.</strong></em><em><strong>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~</strong></em><em><strong>Update: So, I am here in my hospital room.  Got admitted Monday.  PICC placement was rough, took about an hour and a half.  But good news its been going great ever since!  Soreness is gone as of today and only minimal bruising and swelling.  I had my first set of levels drawn for the Vanco and they are not what they are supposed to be.  So it looks like they will up the dose and redo levels at the 4th dose.  So that won't be until Friday morning, so at least not going home until then.  At this rate it will be late afternoon Friday at the earliest...grrrrr.  I want to get back to work and was hoping I could work Friday.  But I really need to do this cleanout right this time around.  </strong></em>
 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Original post: I am posting here because I know you will answer!  I am friends with some of you on facebook, but I have NOSY family members so I cannot post there...hahaha.  <br>
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px"><br></div>
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px">So as the title says, I am looking at my 3rd PICC/hospitalization in 8 months.  I am beyond frustrated, prior to last December I was once a year.  Now I feel like I can't get better.  Out patient abx rarely work for me now and even last time I had IV's I was still coughing at the end of the two weeks (although I was getting married, so doc took PICC out and gave me oral meds).  The problem is, I am good while I am on the oral meds (Zyvox or Zyvox/tobi mix)...but within three days I am coughing up a storm again and up at night...the whole shabang.  My PFT's are in the 80's and consistent, it is just the annoying cough.  I don't know what to do next.  I don't want this to be my new norm, I want to be able to go more than 4 months between cleanouts.  I do not enjoy PICC's and I know that I am going to have trouble with the PICC, placement will suck, had a blood clot last time (which thankfully cleared up...but now I am high risk).  </div>
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px"><br></div>
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px">I am just really hoping that this does the trick!  My doctor mentioned a different treatment regimen (higher doses of Vanco in hopes of combatting MRSA) and less emphasis on Tobra/Ceftaz.  I am also planning on being on IV's for three weeks instead of the normal two.  I am not too concerned about that, but I have gotten Red Mans Syndrome from Vanc in the past so they will have to watch me at the hospital.  </div>
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px"><br></div>
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px">What is your average hospitalizations per year? What have you done to try and stay out of hospital? If you have gotten to this point (multiple IV's per year) were you able to change it around? If so how?  Also at what point did you say it was time for a Port?  As I said, I have a history of blood clot and am a very difficult stick for the PICC so I am slightly concerned with that procedure (scheduled for Monday).  I am hoping to not need PICC for a while so if I got a port I feel like it would be wasteful...at least my long term plan is to NOT need IV's for a while...but of course that could change!  </div>
 
M

MCGrad2006

Guest
<em><strong>Update 2: I am home. I actually came home yesterday, Thursday. The CF team came into my room around 1 and was like btw we are working on getting you home today. I was like HUh? I was under the impression that they were going to have to do Vanc levels again which would not have happened until the middle of the night. But I guess the doctors will order testing for Sunday. Right now I am doing Vanc over two and half hours! ICK! It is soooooo long. But it is because the dose is higher than I am used to so I wanted to make sure I could tolerate it. No Problems yet so I think I will be calling the doctor to see if they can switch it to the one hour Intermate Ball. </strong></em><em><strong>I am amazed at how exhausted I am coming home from the hospital. I was feeling good while I was there yesterday and I had energy...but man riding home and then getting home, I was WIPED. Overall I am feeling better, hopefully that means this is doing the trick.</strong></em><em><strong>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~</strong></em><em><strong>Update: So, I am here in my hospital room. Got admitted Monday. PICC placement was rough, took about an hour and a half. But good news its been going great eversince! Soreness is gone as of today and only minimal bruising and swelling. I had my first set of levels drawn for the Vanco and they are not what they are supposed to be. So it looks like they will up the dose and redo levels at the 4th dose. So that won't be until Friday morning, so at least not going home until then. At this rate it will be late afternoon Friday at the earliest...grrrrr. I want to get back to work and was hoping I could work Friday. But I really need to do this cleanoutright this time around. </strong></em>
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Original post: I am posting here because I know you will answer! I am friends with some of you on facebook, but I have NOSY family members so I cannot post there...hahaha. <br>
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px"><br>
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px">So as the title says, I am looking at my 3rd PICC/hospitalization in 8 months. I am beyond frustrated, prior to last December I was once a year. Now I feel like I can't get better. Out patient abx rarely work for me now and even last time I had IV's I was still coughing at the end of the two weeks (although I was getting married, so doc took PICC out and gave me oral meds). The problem is, I am good while I am on the oral meds (Zyvox or Zyvox/tobi mix)...but within three days I am coughing up a storm again and up at night...the whole shabang. My PFT's are in the 80's and consistent, it is just the annoying cough. I don't know what to do next. I don't want this to be my new norm, I want to be able to go more than 4 months between cleanouts. I do not enjoy PICC's and I know that I am going to have trouble with the PICC, placement will suck, had a blood clot last time (which thankfully cleared up...but now I am high risk).
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px"><br>
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px">I am just really hoping that this does the trick! My doctor mentioned a different treatment regimen (higher doses of Vanco in hopes of combatting MRSA) and less emphasis on Tobra/Ceftaz. I am also planning on being on IV's for three weeks instead of the normal two. I am not too concerned about that, but I have gotten Red Mans Syndrome from Vanc in the past so they will have to watch me at the hospital.
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px"><br>
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px">What is your average hospitalizations per year? What have you done to try and stay out of hospital? If you have gotten to this point (multiple IV's per year) were you able to change it around? If so how? Also at what point did you say it was time for a Port? As I said, I have a history of blood clot and am a very difficult stick for the PICC so I am slightly concerned with that procedure (scheduled for Monday). I am hoping to not need PICC for a while so if I got a port I feel like it would be wasteful...at least my long term plan is to NOT need IV's for a while...but of course that could change!
 
M

MCGrad2006

Guest
<p><em><strong>Update 2: I am home. I actually came home yesterday, Thursday. The CF team came into my room around 1 and was like btw we are working on getting you home today. I was like HUh? I was under the impression that they were going to have to do Vanc levels again which would not have happened until the middle of the night. But I guess the doctors will order testing for Sunday. Right now I am doing Vanc over two and half hours! ICK! It is soooooo long. But it is because the dose is higher than I am used to so I wanted to make sure I could tolerate it. No Problems yet so I think I will be calling the doctor to see if they can switch it to the one hour Intermate Ball. </strong></em><p><em><strong>I am amazed at how exhausted I am coming home from the hospital. I was feeling good while I was there yesterday and I had energy...but man riding home and then getting home, I was WIPED. Overall I am feeling better, hopefully that means this is doing the trick.</strong></em><p><em><strong>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~</strong></em><p><em><strong>Update: So, I am here in my hospital room. Got admitted Monday. PICC placement was rough, took about an hour and a half. But good news its been going great eversince! Soreness is gone as of today and only minimal bruising and swelling. I had my first set of levels drawn for the Vanco and they are not what they are supposed to be. So it looks like they will up the dose and redo levels at the 4th dose. So that won't be until Friday morning, so at least not going home until then. At this rate it will be late afternoon Friday at the earliest...grrrrr. I want to get back to work and was hoping I could work Friday. But I really need to do this cleanoutright this time around. </strong></em>
<p>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
<p>Original post: I am posting here because I know you will answer! I am friends with some of you on facebook, but I have NOSY family members so I cannot post there...hahaha. <br>
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px"><br>
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px">So as the title says, I am looking at my 3rd PICC/hospitalization in 8 months. I am beyond frustrated, prior to last December I was once a year. Now I feel like I can't get better. Out patient abx rarely work for me now and even last time I had IV's I was still coughing at the end of the two weeks (although I was getting married, so doc took PICC out and gave me oral meds). The problem is, I am good while I am on the oral meds (Zyvox or Zyvox/tobi mix)...but within three days I am coughing up a storm again and up at night...the whole shabang. My PFT's are in the 80's and consistent, it is just the annoying cough. I don't know what to do next. I don't want this to be my new norm, I want to be able to go more than 4 months between cleanouts. I do not enjoy PICC's and I know that I am going to have trouble with the PICC, placement will suck, had a blood clot last time (which thankfully cleared up...but now I am high risk).
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px"><br>
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px">I am just really hoping that this does the trick! My doctor mentioned a different treatment regimen (higher doses of Vanco in hopes of combatting MRSA) and less emphasis on Tobra/Ceftaz. I am also planning on being on IV's for three weeks instead of the normal two. I am not too concerned about that, but I have gotten Red Mans Syndrome from Vanc in the past so they will have to watch me at the hospital.
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px"><br>
<div style="PADDING-BOTTOM: 0px; MARGIN: 0px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-FAMILY: Verdana, Arial, Helvetica, sans-serif; FONT-SIZE: 12px; PADDING-TOP: 0px">What is your average hospitalizations per year? What have you done to try and stay out of hospital? If you have gotten to this point (multiple IV's per year) were you able to change it around? If so how? Also at what point did you say it was time for a Port? As I said, I have a history of blood clot and am a very difficult stick for the PICC so I am slightly concerned with that procedure (scheduled for Monday). I am hoping to not need PICC for a while so if I got a port I feel like it would be wasteful...at least my long term plan is to NOT need IV's for a while...but of course that could change!
 
J

JustDucky

New member
((Caitlin))...I am so sorry you are having such a hard time this year....I average about 4 times a year inpatient, but this year has been ridiculous for me as well. I am on my second hospitalization in 2 months... .I literally went home for a week and a half and then wham! High fevers and staph in my blood/lungs along with the usual critters. I understand your frustration for sure, it seems like it is very hard to find that solid ground again. It sounds like you need to have your routine changed up a bit...maybe the 3 weeks will do it for you, I know it does for me. Anything less, and I find myself exacerbating fairly soon after treatment. My docs are still trying to figure out how to keep me from getting so sick so quickly...my last few admissions were pretty scary, this current one tanked me so fast that it scared me. Like you, I hope that they figure something out. Infectious disease docs have been helping out, maybe they would be good for you too as far as tweaking things if you don't already use them.

As far as ports go, I got one after my 5th or so PICC became infected, I always reacted to tegaderms at the insertion site, my skin was always a mess which bacteria loved. A port became the most viable option. So far I am pleased with my decision as I have had no problems with it. It makes for easy access whenever I need IV's, no need to wait for a PICC team. It is access and go. If you have problems with your veins and PICC's, it might be time for one.

I hope everything works out for you and that the docs figure out something.
Hugs, Jenn
 
J

JustDucky

New member
((Caitlin))...I am so sorry you are having such a hard time this year....I average about 4 times a year inpatient, but this year has been ridiculous for me as well. I am on my second hospitalization in 2 months... .I literally went home for a week and a half and then wham! High fevers and staph in my blood/lungs along with the usual critters. I understand your frustration for sure, it seems like it is very hard to find that solid ground again. It sounds like you need to have your routine changed up a bit...maybe the 3 weeks will do it for you, I know it does for me. Anything less, and I find myself exacerbating fairly soon after treatment. My docs are still trying to figure out how to keep me from getting so sick so quickly...my last few admissions were pretty scary, this current one tanked me so fast that it scared me. Like you, I hope that they figure something out. Infectious disease docs have been helping out, maybe they would be good for you too as far as tweaking things if you don't already use them.

As far as ports go, I got one after my 5th or so PICC became infected, I always reacted to tegaderms at the insertion site, my skin was always a mess which bacteria loved. A port became the most viable option. So far I am pleased with my decision as I have had no problems with it. It makes for easy access whenever I need IV's, no need to wait for a PICC team. It is access and go. If you have problems with your veins and PICC's, it might be time for one.

I hope everything works out for you and that the docs figure out something.
Hugs, Jenn
 
J

JustDucky

New member
((Caitlin))...I am so sorry you are having such a hard time this year....I average about 4 times a year inpatient, but this year has been ridiculous for me as well. I am on my second hospitalization in 2 months... .I literally went home for a week and a half and then wham! High fevers and staph in my blood/lungs along with the usual critters. I understand your frustration for sure, it seems like it is very hard to find that solid ground again. It sounds like you need to have your routine changed up a bit...maybe the 3 weeks will do it for you, I know it does for me. Anything less, and I find myself exacerbating fairly soon after treatment. My docs are still trying to figure out how to keep me from getting so sick so quickly...my last few admissions were pretty scary, this current one tanked me so fast that it scared me. Like you, I hope that they figure something out. Infectious disease docs have been helping out, maybe they would be good for you too as far as tweaking things if you don't already use them.
<br />
<br />As far as ports go, I got one after my 5th or so PICC became infected, I always reacted to tegaderms at the insertion site, my skin was always a mess which bacteria loved. A port became the most viable option. So far I am pleased with my decision as I have had no problems with it. It makes for easy access whenever I need IV's, no need to wait for a PICC team. It is access and go. If you have problems with your veins and PICC's, it might be time for one.
<br />
<br />I hope everything works out for you and that the docs figure out something.
<br />Hugs, Jenn
 
R

rubyroselee

New member
Hi Caitlin,

I'm so sorry to hear this is happening to you. I don't have any wise words of advice, but I sure do hope that this treatment does the trick and you'll be PICC-free for a long time. Just try to stay positive and take it day by day.
 
R

rubyroselee

New member
Hi Caitlin,

I'm so sorry to hear this is happening to you. I don't have any wise words of advice, but I sure do hope that this treatment does the trick and you'll be PICC-free for a long time. Just try to stay positive and take it day by day.
 
R

rubyroselee

New member
Hi Caitlin,
<br />
<br />I'm so sorry to hear this is happening to you. I don't have any wise words of advice, but I sure do hope that this treatment does the trick and you'll be PICC-free for a long time. Just try to stay positive and take it day by day.
 
L

lizlas

Guest
<P>Hi im seem to be needing ivs more as well... iv of tobramycin worked great thru the 90s. and did one once a yr or 2 years for only 2 weeks for pseudomonas  with great lasting results. but in 2000 i got a bacteria called bordetella hinzii /avium. at this time the specialist didnt think i had cf. just mild upper lobe bronchiectasis...and despite my chest getting FULL green gunk with this new bacteria .....and an increrased horrid cough ....the dr. didnt treat it because the cf experts at the local cf hopital mcmaster said its not a pathogen....i knew it was from how my lungs were so full and horrid taste.. after 2 frustrating years ...my pfts finally dropped from 120 to 96 and start coughing blood....so i fianlly got iv....but it didnt get rid of the bacteria.  i was and am still so mad at these drs. the lack of treatment caused the bronchiectasis to go crazy and spread every where . the pseudomonas doesnt grow any more ...the hinzii has taken over.</P>
<P> </P>
<P>so for the last 10 yrs and especially the last few have been ivs 2 times a yr and i need them for 4 - 6 weeks and the results of cutting down the amount of sputum is not great,  and lungs reflare quickly.  my new specialist who i consulted in 2005 sent my sputum twice to ottawa for synergy studies.  and they send back lots of iv combos to treat and supress the bordetterlla but they just do not work well. and i have started having hemoptysis at least once a month...my last bad one was in april and did 3 weeks  tobramycin and 3 weeks amikacin.amikacin works better. i do luv the picc lines hate having them put in. and i still have this one from april...i get no clots or infections with them and had one in for 15 mos...</P>
<P>there used to be 100s of companies researching new antibiotics, but my. dr. said there are only 6 companies researching antibioitcs...no money in....geez thanks</P>
<P>have you ever had your sputum sent for synergy studies...that might be helpful for you....inhaking colistin used to work....so now i am inhaling amikacin 250mg bid and on oral 400mg avelox and 250 mg zythromax....i find inhaling amikacin much more tolerable than tobi or tobramycin....i cant evn talk after inhaling those 2.  im at my wits end..</P>
 
L

lizlas

Guest
<P>Hi im seem to be needing ivs more as well... iv of tobramycin worked great thru the 90s.and did one once a yr or 2 years for only 2 weeks for pseudomonas with greatlasting results.but in 2000 i got a bacteria called bordetella hinzii /avium. at this time the specialist didnt think i had cf. justmild upper lobe bronchiectasis...and despite my chest getting FULL green gunk with this new bacteria .....and an increrased horrid cough ....the dr. didnt treat it because the cf experts at the local cf hopital mcmaster said its not a pathogen....i knew it was from how my lungs were so full and horrid taste.. after 2 frustrating years ...my pfts finally dropped from 120 to 96 and start coughing blood....so i fianlly got iv....but it didnt get rid of the bacteria. i was and am still so mad at these drs.the lack of treatment caused the bronchiectasis to go crazy and spread every where .the pseudomonas doesnt grow any more ...the hinzii has taken over.</P>
<P></P>
<P>so for the last 10 yrs and especially the last few have been ivs 2 times a yr and i need them for 4 - 6 weeks and the results of cutting down the amount of sputum is not great, and lungs reflare quickly. my new specialist who i consulted in 2005 sent my sputum twice to ottawa for synergy studies. and they send back lots of iv combos to treat and supress the bordetterlla but they just do not work well. and i have started having hemoptysis at least once a month...my last bad one was in april and did3 weeks tobramycin and 3 weeks amikacin.amikacin works better. i do luv the picc lines hate having them put in. and i still have this one from april...i get no clots or infections with them and had one in for 15 mos...</P>
<P>there used to be 100s of companies researching new antibiotics, but my. dr. said there are only 6 companies researching antibioitcs...no money in....geez thanks</P>
<P>have you ever had your sputum sent for synergy studies...that might be helpful for you....inhaking colistin used to work....so now i am inhaling amikacin 250mg bid and on oral 400mg avelox and 250 mg zythromax....i find inhaling amikacin much more tolerable than tobi or tobramycin....i cant evn talk after inhaling those 2. im at my wits end..</P>
 
L

lizlas

Guest
<P><BR>Hi im seem to be needing ivs more as well... iv of tobramycin worked great thru the 90s.and did one once a yr or 2 years for only 2 weeks for pseudomonas with greatlasting results.but in 2000 i got a bacteria called bordetella hinzii /avium. at this time the specialist didnt think i had cf. justmild upper lobe bronchiectasis...and despite my chest getting FULL green gunk with this new bacteria .....and an increrased horrid cough ....the dr. didnt treat it because the cf experts at the local cf hopital mcmaster said its not a pathogen....i knew it was from how my lungs were so full and horrid taste.. after 2 frustrating years ...my pfts finally dropped from 120 to 96 and start coughing blood....so i fianlly got iv....but it didnt get rid of the bacteria. i was and am still so mad at these drs.the lack of treatment caused the bronchiectasis to go crazy and spread every where .the pseudomonas doesnt grow any more ...the hinzii has taken over.</P>
<P></P>
<P>so for the last 10 yrs and especially the last few have been ivs 2 times a yr and i need them for 4 - 6 weeks and the results of cutting down the amount of sputum is not great, and lungs reflare quickly. my new specialist who i consulted in 2005 sent my sputum twice to ottawa for synergy studies. and they send back lots of iv combos to treat and supress the bordetterlla but they just do not work well. and i have started having hemoptysis at least once a month...my last bad one was in april and did3 weeks tobramycin and 3 weeks amikacin.amikacin works better. i do luv the picc lines hate having them put in. and i still have this one from april...i get no clots or infections with them and had one in for 15 mos...</P>
<P>there used to be 100s of companies researching new antibiotics, but my. dr. said there are only 6 companies researching antibioitcs...no money in....geez thanks</P>
<P>have you ever had your sputum sent for synergy studies...that might be helpful for you....inhaking colistin used to work....so now i am inhaling amikacin 250mg bid and on oral 400mg avelox and 250 mg zythromax....i find inhaling amikacin much more tolerable than tobi or tobramycin....i cant evn talk after inhaling those 2. im at my wits end..</P>
 
C

cindylou

Guest
Caitlin, I have been in EXACTLY the same boat! For most of my life I was a 1 time a year gal, but in 2008-2009 I suddenly turned into an "every 3 months" person. It was SO frustrating. Here are my tips:

-If you're having trouble with PICCs, get a port. Everyone talks about the difficult emotional ramifications of a port, etc. etc. etc., but honestly - I had about one day of being blue after I got mine in, and since then, I've LOVED it. It has made life so much easier. Even when I'm not on frequent IVs, I consider it so worth it. Even if I were to permanently go back to 1 round a year, I'd still want a port over a PICC! Feel free to PM me if you have any more port questions.

-I was in the hospital 7 times in 18 months and then, suddenly, I was out for a year and 2 days. So I definitely am here to promise you that it IS possible to get back from where you are now. I truly never thought that I would be able to break the cycle - but I did. This year I've been back to more frequent IVs, but I'm just trying to take it one admission at a time, and I'm hopeful that I can have another good year like last year. One thing I've really learned is that CF can be pretty fickle - which can be a good thing as well as a bad! So don't give up yet.

It's so frustrating to be in that position. I remember it VERY well! I'm crossing my fingers for you that things start looking up.
 
C

cindylou

Guest
Caitlin, I have been in EXACTLY the same boat! For most of my life I was a 1 time a year gal, but in 2008-2009 I suddenly turned into an "every 3 months" person. It was SO frustrating. Here are my tips:

-If you're having trouble with PICCs, get a port. Everyone talks about the difficult emotional ramifications of a port, etc. etc. etc., but honestly - I had about one day of being blue after I got mine in, and since then, I've LOVED it. It has made life so much easier. Even when I'm not on frequent IVs, I consider it so worth it. Even if I were to permanently go back to 1 round a year, I'd still want a port over a PICC! Feel free to PM me if you have any more port questions.

-I was in the hospital 7 times in 18 months and then, suddenly, I was out for a year and 2 days. So I definitely am here to promise you that it IS possible to get back from where you are now. I truly never thought that I would be able to break the cycle - but I did. This year I've been back to more frequent IVs, but I'm just trying to take it one admission at a time, and I'm hopeful that I can have another good year like last year. One thing I've really learned is that CF can be pretty fickle - which can be a good thing as well as a bad! So don't give up yet.

It's so frustrating to be in that position. I remember it VERY well! I'm crossing my fingers for you that things start looking up.
 
C

cindylou

Guest
Caitlin, I have been in EXACTLY the same boat! For most of my life I was a 1 time a year gal, but in 2008-2009 I suddenly turned into an "every 3 months" person. It was SO frustrating. Here are my tips:
<br />
<br />-If you're having trouble with PICCs, get a port. Everyone talks about the difficult emotional ramifications of a port, etc. etc. etc., but honestly - I had about one day of being blue after I got mine in, and since then, I've LOVED it. It has made life so much easier. Even when I'm not on frequent IVs, I consider it so worth it. Even if I were to permanently go back to 1 round a year, I'd still want a port over a PICC! Feel free to PM me if you have any more port questions.
<br />
<br />-I was in the hospital 7 times in 18 months and then, suddenly, I was out for a year and 2 days. So I definitely am here to promise you that it IS possible to get back from where you are now. I truly never thought that I would be able to break the cycle - but I did. This year I've been back to more frequent IVs, but I'm just trying to take it one admission at a time, and I'm hopeful that I can have another good year like last year. One thing I've really learned is that CF can be pretty fickle - which can be a good thing as well as a bad! So don't give up yet.
<br />
<br />It's so frustrating to be in that position. I remember it VERY well! I'm crossing my fingers for you that things start looking up.
 
B

beleache

New member
Hi Caitlin, <div><br></div><div> I am sorry to hear you have to go back in..  It is very frustrating to say the least, when you have done all you can & still find yourself not doing well..  I think it's a good idea to change up the meds/duration of the meds.. </div><div><br></div><div> As for me & I think most of us, it changes year to year.. You may p/u more bugs one year as opposed to another.. </div><div><br></div><div> I decided to get a port due to my crappy veins, & it was the best thing I ever did..  Although I clot due to the port so have to be on blood thinners unless the port is removed..  I do shots of Arixtra (blood thinner) so that if I have a bleed we can hold the shots when it happens..</div><div><br></div><div>  You have great pft's & I hope that your drs.  will do all they can to keep it that way.. </div><div><br></div><div> Take care & keep us posted  <3  joni</div>
 
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beleache

New member
Hi Caitlin,<br>I am sorry to hear you have to go back in.. It is very frustrating to say the least, when you have done all you can & still find yourself not doing well.. I think it's a good idea to change up the meds/duration of the meds..<br>As for me & I think most of us, it changes year to year.. You may p/u more bugs one year as opposed to another..<br>I decided to get a port due to my crappy veins, & it was the best thing I ever did.. Although I clot due to the port so have to be on blood thinners unless the port is removed.. I do shots of Arixtra (blood thinner) so that if I have a bleed we can hold the shots when it happens..<br>You have great pft's & I hope that your drs. will do all they can to keep it that way..<br>Take care & keep us posted <3 joni
 
B

beleache

New member
Hi Caitlin,<br>I am sorry to hear you have to go back in.. It is very frustrating to say the least, when you have done all you can & still find yourself not doing well.. I think it's a good idea to change up the meds/duration of the meds..<br>As for me & I think most of us, it changes year to year.. You may p/u more bugs one year as opposed to another..<br>I decided to get a port due to my crappy veins, & it was the best thing I ever did.. Although I clot due to the port so have to be on blood thinners unless the port is removed.. I do shots of Arixtra (blood thinner) so that if I have a bleed we can hold the shots when it happens..<br>You have great pft's & I hope that your drs. will do all they can to keep it that way..<br>Take care & keep us posted <3 joni
 
J

Jane

Digital opinion leader
Oh UGH Caitlin! I am so sorry to read you are going back on IVs. It is so frustrating when things start to change from your norm. This year the boys have been "in" more than usual, so the doctors have been trying different combos with them to try to find the right one.

Josh loves his port (except for the bump on his skinny chest <img src="i/expressions/face-icon-small-smile.gif" border="0"> It is so much easier!
Good luck tomorrow. Keep us posted.
 
J

Jane

Digital opinion leader
Oh UGH Caitlin! I am so sorry to read you are going back on IVs. It is so frustrating when things start to change from your norm. This year the boys have been "in" more than usual, so the doctors have been trying different combos with them to try to find the right one.

Josh loves his port (except for the bump on his skinny chest <img src="i/expressions/face-icon-small-smile.gif" border="0"> It is so much easier!
Good luck tomorrow. Keep us posted.
 
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