That is weird that you grew out pseudo and MRSA...not too common for even COPD'ers unless they have thick mucous from bronchiectasis. Sounds like you were treated much like I am these days. I grow out pseudo, cepacia (pseudo's much meaner cousin), staph and steno (another resistant bug) and have had to go through IV's at least every 4 months or so inpatient. I too have a port in my chest, I have no veins and PICC lines weren't too friendly to me.
I nebulize TOBI (inhaled tobramycin) every other month to keep the PA colonies down and do chest physio everyday as well along with my tons of other meds. I swear, I am a walking pharmacy!
My pressures have always been low..I actually read somewhere that CF'ers have lower than usual pressures. When my verapamil was held in the hospital (they held it due to really low blood pressures...I think I was as low as 70's systolically) my pressures remained at 90's even high 80's so I guess that is my norm. When I am sick, it does drop so they do watch me more carefully.
I pray that you remain infection free..I agree, Zyvox is one harsh med! The worst one that I had to take hands down has to be Zosyn IV...that stuff is like battery acid going through my veins. I always cringe whenever docs want to put me on that one.
I pray that you remain infection free, sounds like you have been through the mill too! Hugs, Sunny :)
And I thought I was sick. Wow, you seem to have a great attitude. I know in my case I just keep chugging. I had MRSA and Pseudomonas in my lungs which does not always present as pneumonia, however, Doctors wrote me off as a carrier and then sent me oout into community to spread it around. I live in a very small town outside of Tallahassee and have no insurance so my treatment choices are somewhat limited. I was refered to Vocational Rehab which is a great program in Florida. The ENT man I saw out of Tallahassee is the best and he told me there are no Psedomonas carriers as they are all dead. Most people with CF have problems with Pseudomonas but with the right treatment, they don't die from it. My Dr. took a very agressive approach but 44 outpatient IV's and one surgery for a port ( my veins were shot) as well as a round of Zyvox pills ($82.00 a pill or $1600.00), I still tested positive. As luck and God would have it, I had been taking amoxicillian before all this happened so I thought "why not finish it, nothing else has worked". I knew when I took the amox, I had started to feel better. I talked my local PA into putting me on 8 weeks of it and low and behold, I have tested negative 2x. I researched amox and it prevents bacteria fron building cell walls to protect itself. Pseudomonas forms what's known as a bio-film around it self to keep bacteria out. It was a natural but as to why it worked on the MRSA I don't know. I can only think that it has not been used against MRSA in a trillion years. Maybe the MRSA bug had lost it's resistance to it. Anyway it worked and I am one happy camper!
The Zyvox was like taking chemo must be like. I had no choice ,I thought, but to keeptaking it. Anyway, something ate a hole in my stomach and I had a gastrointestional bleed out on April Fools ( not much of a joke to me). It was my second in 5 years. First one literally killed me and they brought me back. It was from aspirin which of course I stopped taking. They say this was from taking NSAIDS but I really think it was the zyvox.
I am feeling much better but still building up my strength. Thanks for the encouragement. I would not wish you sick for the world but it is nice to know that someone understands and that I am not alone. I am starting today to notice a difference in the way I feel. I am much more relaxed. Makes a lot of sense that if my legs cramped, other things in my body would i.e. bronchospasms.
You really do have low blood pressure. Have you thought about cutting back on your dosage? When I am that low, I am bleeding but I am sure they have checked for that . Albuterol is what raises my BP.
Take care and thanks for your response
Sonnie :)
I have pretty bad asthma and atypical CF (cystic fibrosis) along with a whole slew of other problems. I am literally a walking pharmacy LOL! I take the verapamil mostly to keep my arrhythmias in check (I have SVT)..I actually have too low a blood pressure (90/50) so I have to watch that. Docs always say to eat more salt.
That's great that you don't have the cramps in your legs...that is a terrible sensation.
I do remember that when I was on beta blockers like Atenolol, I had more bronchospasms. I was also on a pretty high dose, the docs eventually had to scratch that one because my asthma was getting worse on the med.
Sunny :)
Thanks for the info. Do you have COPD or just Hypertension? I was looking at my previous note and it makes me sound like an idiot. I really can spell. Nails are getting to long. Anyway, fatigue is supposed to be a side effect, I don't need anymore of that! I don't have the leg cramps I had with the Beta (wrote Alpha, meant Beta) Blocker so that's a start. Can't tell any difference in breathing yet. Alpha blockers are suppose to hinger breathin gin COPD. Sonnie
I take verapamil 120mg SR (sustained release) instead of multiple times a day...perhaps you could go on long acting verapamil, I would definitely bring this up to your doctor and see what he thinks. I agree, taking meds several times a day is a royal pain!
Not sure about the other meds, just the verapamil. Sunny