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Apparently I'm NOT so compliant after all!

5 years ago

I have a chronic pulmonary condition, called bronchiectasis. Only about 5% of patients with this do NOT also have CF, so I'm in the 5%. I was doing pretty well with this until both my prescription plans refused to pay for Protonix for my acid reflux any longer - very common for pulmonary and asthma patients to have this. They told me to take OTC Prilosec. Within 3 weeks of doing this, I became ill - low grade fevers, chills, general malaise, coughing lung congestion, pneumonia - you name it - I had it over the next 8 months. Finally, after a trip to St Louis to Washington U Med School, I was properly diagnosed but we still didn't figure out what had caused it. That happened a few months later, when I saw a new pulmonologist who had trained at Wash U and been at Emory for several years. He was brought into our local med school to be Chief of Medicine. He put me in touch with a new head of gastroenterology who did a test and discovered that I had "silent" reflux. This was what was causing my trouble, and it was the bacteria pseudomonas aeruginosa. It is a ubiquitous, gram negative bacteria that is in the soil, water and air. It really only causes trouble for people who are on ventilators or who have bronchiectasis - it won't bother the rest of you. I had gotten this from the reflux.

Unfortunately, it's nearly impossible to totally get rid of once one has it - one sort of keeps it at bay and hopes it doesn't colonize again. There are few antibiotics that work on it, and it is now on the WHO 3 worst bacteria as it is highly antibiotic resistant.

But I've done well the past few years once we figured out what was wrong. I take Zithromax 3 times weekly at all times - a standard way of keeping the bacteria from colonizing. I use a percussion vest twice daily and use inhaled saline in a nebulizer to keep the mucus loose (excess mucus is part of the disease just as it is for CF). If I get sick, I let my doctor know. I've been going to pulmonary rehab now for 11 1/2 years - go 3 times weekly, even when on vacation.

The bad part is that I am the poster child for adverse reactions to drugs. There are three oral antibiotics that treat gram negative bacteria like pseudomonas; Cipro, Levaquin, and Avalox. I cannot take Cipro - had severe edema in my leg and intense itching - this means it was badly affecting my kidneys and if continued could cause me to go on dialysis. Took Levaquin for a while. It is a "Black Box" drug as it can cause the spontaneous rupture of the achilles tendon - just rolling over in bed can cause it. It did't do that to me, but it caused a tear in a tendon in my shoulder - 2 years ago and even with physical therapy not totally "right". So, I was left with Avolox. Now, it has caused irregular breathing, drop in oxygen SAT, high irregular heart beat, coughing and congestion and just plain misery. So, no more Avolox. And my pseudomonas has once again colonized.

My doctor said I would have to go on IV antibiotics now and in the future. I've done this twice before with limited success. The first time, I had to go to a nearby hospital 2 times daily for 14 days, 10 hrs apart. Gawd, it was like having a nursing infant again. The next time, they realized that I had TricareForLife and it allows and pays for home infusion. I had to pay 25% co-pay for the antibiotic (less than $200), and Tricare paid for all the supplies and the nurse to come to teach me and to change the dressing. I had to have a Picc Line put in in order to do this. It was SO much easier doing this at home - had a little time flexibility.

So, when he said I had to do this again, I thought "I can do this - it's at home". Finally got a time for the Picc Line - 7AM tomorrow. That's VERY early for me. Then the company that supplies the drug, supplies and nurse called me. New coverage - it would cost me $100 a day for the antibiotic co-pay and $200 a day for the supplies (plastic nothings that probably cost 24cents in China). And I would have to pay for the nurse - $500 each trip. That's $5200 and I would have to do this every single time I need an antibiotic for the rest of my life. Plus I had to do the infusion every 8 hours - 8AM, 4PM and midnight. Yikes! I can't afford that!

So, physician's nurse said I could do it at the downtown hospital and Medicare and Tricare would cover most of it. Go downtown THREE times a day, including at MIDNIGHT? This is NOT a safe area, no valet parking - you park in the garage and then phone the Security Guard who takes his sweet time coming and escorting you to the ambulatory care center, then you have to call him again to come back and get you.

At this point, my "compliance" flew right out the window. I told her I simply could not do this - I'd rather go upstairs and get in bed and just die - it would be far easier. And I meant it. I just cannot do this - it's totally overwhelming.

God love this woman, she made multiple phone calls over the next few hours and also talked to my doctor, and they have arranged for me to go tomorrow at 11AM to the nearby hospital (I do my pulmonary rehab there) and get the PICC line put in and do my first infusion. Then I will go twice daily, about 8 - 9 hours apart. This I can manage. Not easily, but I can do it.

Did I mention that I'm supposed to be flying to London in 3 weeks to meet my DS and DGC there for their spring break? Not looking promising and I will lose a LOT of money if no one goes - will probably just tell my son to go without me.

I HATE being old and in poor health...

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