Once a month breathing treatment?

Amy

I have never heard of this. I am sure you are desperately worried.

Hoping this all resolves shortly

Maybe some others will chime in


Hugs
Carol

Amy, I've never heard of that, either. When I had my transplant (as well as other surgeries) I did breathing exercises with an incentive spirometer, but there was no med involved and no toxicity. This particular treatment is usually given after someone has surgery, as there is a lot of mucus in the lungs from being under anesthesia, and especially from being on a ventilator. When you find out, let us know exactly what they are doing to him.

Hugs,
Connie

Ok, finally talked to the TEAM. They are taking him of baxtrim and trying Pentamidine. It is a once a month antibiotic treatment to fight possible pneumonia and lung infections. The PA stated that it is not toxic and that it is not bad. Since we are still trying to figure out what is up with this fever, they figured they would take him off of baxtrim and try this breathing treatment. They also advised that after 1 dose they may switch him to something else.

He did his treatment and started coughing so bad he was throwing up. He got about half done. After the treatment his Oxygen sats were down to 86. We have him back on oxygen ( he hasn't been on it since the 23rd when he was moved to the regular floor). His sats are back where they should be and he is feeling a little better. Except for the fact that he keeps coughing now.

I hate it when someone comes in before the doctors and gets everyone scared. We will see how the rest of the day is, now he is drained and just wants to rest. He was having a good day, went for a walk and then did the steps. Guess we will wait and see how today turns out!!

Amy

Thanks Connie, on the paper they gave us they have an "x" in it, sorry.

So far we are dealing with the side effects, he has not been able to stop coughing, sometimes so bad he throws up. He continues to get short of breath also.

I dont think he will let them give this med to him again! So far the experience has been very very bad!

Amy

Al had to quit taking bactrim due to it lowering blood count . We have to do pentamidine treatments also ..his first one landed us in the emerency room with al actually having trouble breathing , we were going labs that day and then seeing transplant doc , with a pit stop to er ....the next month they wanted him to do it agayin and I was like Hell no ...but they made us and the second was not as bad , he had a little cold the first time which no I think was why he had such. A severe reaction , I had told transplant coordinator of the cold but I guess she didn't put two N two together ...al is finished with needing them for now . They set us up in a backroom in the infectious diease outpatient unit , which thankgoodness I was with al , I stopped the treatment and ran down the hall to get nurse ....I suggest just from our experience have. A loved one with you while taking this treatment for the first time . Danelle

I've been taking bactrim daily for the past 3 years, without any side effects.

Thanks Danelle,   We are hoping that we do not have to do that again!  He already told the team that they need to find something else for him!  Glad we are not the only ones who have had such a bad experience with it.  The staff here says they have never seen anyone have such a reaction to it!  Hopefully he will be on something different since he still getting the low grade fever.  Guess its not the bactrim.

Amy

Does he have any lines that could be infected ? I hope they find something else also , the first treatment was a super scare . But the second wasn't bad but I do remember reading somewhere that they shouldn't have a infection or be sick when taking the breathing treatment. Danelle

No, no infections anywhere, he has been cultured almost on a daily basis due to this recurring fever that he gets every evening. We were told about dapsone today. Thanks everyone

Amy