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Tune up?
- Thread starter gabby
- Start date
My husband has never been in for a "tune up" but was considering going in before he goes to alaska in June. Can somebody explain to me what this entials, how long you are usually there and what they do specifically (IV antibiotics, treatments???)
thanks
Julie (wife to mark 24 w/CF)
thanks
Julie (wife to mark 24 w/CF)
Can somebody explain to me what the purpose for the tune up is exactly. From what I understand you go in to get antibiotics, right? And I assume that is because there is some underlying bacteria infection like psuedomonia (sp?). Is this right? Because, I have asked this question before and I was told it is just basically a precationary thing, but I don't understand how antibiotics could help if there was no infection. I'm sorry if my question is not worded properly I'm just trying to figure this out. My step-son was hospitalized recently for about 2 weeks and we were trying to find out what could be wrong, we don't communicate well with his mom but she did tell us that nothing was wrong it was just precationary. And that has left me with questions.
Jen
Jen
NoDayButToday
New member
Jen, The infection is there, the reason they call it precautionary is because it is done to PREVNT lu ng damagem from infection. The idea is if the already existing infections are contrlled, lung damage will be limited
Coll-
That helps alot. Can you answer one more for me?
Is the infection subject to change like from one bacteria to another? Or go away completely? What is the most common bacteria? Does a CFer normally pick up this bacteria as an infant or is it sometimes later? And if they don't have any infection/bacteria then I assume they wouldn't need to go to the hospital for a tune up right?
Thanks,
Jen
That helps alot. Can you answer one more for me?
Is the infection subject to change like from one bacteria to another? Or go away completely? What is the most common bacteria? Does a CFer normally pick up this bacteria as an infant or is it sometimes later? And if they don't have any infection/bacteria then I assume they wouldn't need to go to the hospital for a tune up right?
Thanks,
Jen
NoDayButToday
New member
The bacteria that most people would probably call 'the CF bug' is pseudomonas. There are different strains of it, but theyall belong to the same general heading of pseudomonas. The bacteria doesn't really change from being pseudomonas, but it does mutate itself and therfore the antibiotics that are effective against pseudo change. There is something called synergy testing which test hte sputum for the most effective antibiotics combo; there is also a more basic test which test which individual antibiotics work against pseuidomonas. When a CFer cultures pseudomonas varies tremendously. Some patients culture it at 2, some at 6, some at 14 some at 23, some have yet to cculture it. Unfortunately, pseudo is fairly stubborn, and once you culture it it is likely you will continue to. It can be controlled with antibiotics to a degree. Pseudomonas is also not the oly "CF bug". There is also MRSA, plain old staph, B.Cepacia, Mycobacteriums, aspergillosis, stenotrophmonas maltophilia.... I'mn trying to think of some more I have seen on here in the past. And yes, if a child with CF doesn;t culrtureanything significant, there is no reason for a tune up
AimeeSue82
New member
I go in for tune ups every six months (just got out today, actually!!!). Also something that no one has mentioned is that on top of IV antibiotics, I get respiratory treatments 4 times per day. At home I usually only get one a day. I think all the treatments makes a HUGE difference in PFTS.
-Aimee/22/CF
-Aimee/22/CF
Julie -
Emily would have a better answer probably but she is in the process of moving home from school today. Her finals are over and she has her last meeting for the year with her advisor today. For "tune-ups": Before she got her port, she would go in for the PICC line, they would do peaks and troughs, physical therapy, do some blood work sometimes (to check vitamin levels and liver function I think)adn generally check her diet and have her talk to a dietician...just check her basic CF stuff to be sure she was doing stuff right at home.
Emily would have a better answer probably but she is in the process of moving home from school today. Her finals are over and she has her last meeting for the year with her advisor today. For "tune-ups": Before she got her port, she would go in for the PICC line, they would do peaks and troughs, physical therapy, do some blood work sometimes (to check vitamin levels and liver function I think)adn generally check her diet and have her talk to a dietician...just check her basic CF stuff to be sure she was doing stuff right at home.
Hey guys i have a question, My daughter cultered pseudomonas and MRSA, Kait does not go in to the hospital for a tune-up, she only goes to the hospital for her regular CF check-ups and when she is sick. My question is .... Why go in for a tune-up and be put on antibiotics if you are not "sick"isn't there the risk of someday being resistant to the antibiotics when you may really need them? I really do not see the sense in giving antibiotics if there is no need to, obviously i know that once you culture pseudomonas and MRSA it is always there, just may not show in every culture. I guess i would just want to make sure that the antibiotics that my daughter may need one day will work for her when she needs them...
Kaitsmom<img src="i/expressions/rose.gif" border="0">
Kaitsmom<img src="i/expressions/rose.gif" border="0">
Barbara, thanks for the reply. When she went, just for "tune ups" how long was she in? Mark has never been in as a patient, so he has no idea what to expect period. And I have only had experience with CFers who are on my floor and sick and are there for that reason. Will you pass on to emily that I am interested in hearing what she did for her tune ups. Mark is trying to decide if he wants one before he goes to alaska, I don't think it would be a bad idea-but then again it's his decision.
Thanks,
Julie
Thanks,
Julie
Emily65Roses
New member
I am all moved in... still rearranging and doing 12 loads of laundry... but all moved in. So here I am! Haha.
Okay, for tune-ups... When I had PICCs I was always in longer. They had to get around to giving me the PICC, etc. Then I'd stay for 4-5 days. Now that I have my port, I either don't stay at all... or if there's a new med I'm on, they keep me for a day or two to check my levels, make sure I don't have an allergic reaction, etc.
Then as my mom said, they ask how I'm mentally doing, they check my nutrition, my vitamins, blah blah, etc. They come in once or twice a day to beat on me (they go with whatever your personal preference for PT is, and mine is manual). They make sure I get my Pulmo before bed. They check the pH levels in your urine, they like to look at your feces... it's really great all around. lol
If you have any other questions, ask away. I'll make sure to check back. <img src="i/expressions/face-icon-small-wink.gif" border="0">
Okay, for tune-ups... When I had PICCs I was always in longer. They had to get around to giving me the PICC, etc. Then I'd stay for 4-5 days. Now that I have my port, I either don't stay at all... or if there's a new med I'm on, they keep me for a day or two to check my levels, make sure I don't have an allergic reaction, etc.
Then as my mom said, they ask how I'm mentally doing, they check my nutrition, my vitamins, blah blah, etc. They come in once or twice a day to beat on me (they go with whatever your personal preference for PT is, and mine is manual). They make sure I get my Pulmo before bed. They check the pH levels in your urine, they like to look at your feces... it's really great all around. lol
If you have any other questions, ask away. I'll make sure to check back. <img src="i/expressions/face-icon-small-wink.gif" border="0">
I can put my few cents in on this subject, I go in all the time, the hospital is my second home!!! When I go in for a tune up my pfts are usually down and i am really tired. I have a port so the access my port. My doctor comes in and talks to me and listens to me and also all the residents etc. SO they all look me aver and decided what type of stuff we should try this time. So they write the orders and they get me started on IV antibiotics. They have Reperatory therapy come in and talk with me and start treatments and put me on oxygen. I get four treatments a day, usuall around 8am 12noon 4afternoon 8pm. Along with my treatments they either do manual chest pt, viberator, pep, flutter, or i can do a treatment that i can take and it is like an internal thumping with air being blown into my mouth! After that, My doc has me see a physical therapist and create a plan of exercise while i am in. I also get talk to by the dieticion. They usually set up snacks for me that i would like to have while im in, and anything else that they could get for me. I also see a phsycologist that works with my cf team for all the support or whatever is needed. I usually get lots of blood work for vitamin levels, peak and trof levels for tobra, and whatever else they want to check on. I also get exrayed once a week and sometimes i get cat scans and ultrasounds done. I basically cover the whole hospital!!! I am a piece of work let me tell yah!!! So my day usually goes treatment, iv antibi., breakfast if i want it,pills!, treatment and lunch if i want it, somemore antibiotics a snack, physical therapy, treatment, iv anti., dinner, hooked up to feeding tube, pills, last treatment and sleep. It makes for a really long day, just the average day when you have not alot to do!!! At times i hardly have time to take a bath or shower... But overall, having nice nurses,CNAs, docs and family and friends it helps out and time goes by quicker. I am usually in for around two -four weeks. I dont get sent home on IVs anymore because I have psuedomonis, MRSA, staph. So to get me better it takes like at least three iv antibiotics and at least one oral antibiotic. THat would be way to much for me to do all by myself, so i go into the club!!! I am in Honolulu HI and the hospital i go to is up kinda on a hill, not to far up, but we have great views of the ocean, waikiki, and surrounding areas, that helps a little!!! It just sucks being in the hospital in paradice!!! But once i am out man see yah later....I am gone, to the beach, laying out in the sun whatever!!!
Cariann 20 honolulu w/cf cfrd
Cariann 20 honolulu w/cf cfrd
serendipity730
New member
I usually need IV meds like every 4-5 mos, so like 2-3 times a year. Fortunately, now I do all my IV's at home. I used to do "preemptive tune ups" before I went back to school each semester while I was in undergraduate school, I just don't get the same boost from them anymore.
Last year we came really close to taking our son in for a tune-up, and he was/is not culturing anything abnormal. His issue was atelectasis. The doctor had tried a bronchoscopy, we started him out on intense therapies (4 times a day clapping and albuterol), then started Pulmozyme - but the atelectasis was still there. We sat down to discuss hospitilization (for IV antibiotics to help reduce the atelectasis) and I asked her why he couldn't take oral antibiotics first. She seemed dumbfounded because she thought we'd already tried that (we hadn't) - another example of how important it is to stay on top of your childs treatments. So we went the round of oral antibiotics and saw significant improvement (if not he would have been hospitilized). The doctor expressed to us that the first time he cultures anything she would like to go ahead and put him in the hospital for a tune up to clear up the remaining atelectasis. I keep hoping upon hope that we can get it cleared up on our own, but I think it's pretty deep in his lungs. He now does treatments 3x a day.
Jena
Jena