The cramping/bloating symptoms I experienced on the plane ride to Maui worsened with time. Constant diarrhea and passing long strings of mucous convinced me that I once again had pseudomembraneous colitis or a clostridium difficile (c-diff) recurrence. So I started taking the vancomycin I brought with me. However I only had enough for 4 days at 4x daily.
Then we started calling Group Health to clarify whether I could get a prescription at the local Kaiser Permanente clinic. Kaiser is affiliated with GHC. I used that clinic previously in 1998 and only had to pay a GHC copay. So I assumed I could get a vanco prescription called in there. However the GHC consulting nurse knew zip about coverage and even less about c-diff. She wanted me to describe my symptoms (as if I didn't know what I had). I told her I'd been treated for c-diff previously and this was my 4th recurrence. She didn't believe c-diff recurred. DUUUHHHH!!! She suggested I have my doc call the prescription to my Seattle GHC clinic and they would mail it to me in Maui. However, that would take too long. I wouldn't get it soon enough.
So we found a customer service number and inquired about getting vanco from Kaiser. They said we would just pay a GHC copay if my doc called the prescription to the Kaiser pharmacy. So I called my doc's office with the phone number and my Kaiser member number. (I went to the Lahaina Kaiser Clinic to register and discovered I still was a member from my 1998 visit.) Then the adventure took a turn for the worse.
First the Kaiser pharmacy manager said that Hawaii doesn't allow naturopaths to prescribe drugs. (My doc is a trained, licensed physician who specializes in naturopathy, not just a naturopath.) Eventually the pharmacist told us she could get a clinic doc to OK the prescription.
However, when the Kaiser clinic tried to charge GHC for the cost of vanco (which is rather expensive at $500 for a week's supply), the computer was set up to reject prescriptions over a certain amount. The Kaiser pharmacist didn't know about GHC rules (that prescriptions over a certain amount needed voice approval). So she told us we had exceed our GHC prescription allownance. I had feared that would happen sometime with expensive Vanco. However, after further investigation we learned that we just needed a voice override (a real person to okay the prescription). So we wouldn't have to pay more than a copay for a month's worth of vanco.
The next glitch occurred when we went to pick up the prescription at the Kaiser clinic, after we were told it was available there. They could only get 10 days' worth. I thought we might cut our vacation short and fly back to Seattle to get enough vanco to treat the c-diff with full strength vanco (4x daily) for a week and then taper for at least a month to eliminate spores. Obviously a 10 day supply wouldn't give me enough for 2 weeks of full strength treatment followed by a month of taper. However, the clinic pharmacist said the rest of our prescription would arrive the next day.
This morning we went to the clinic to get the rest of the prescription. However, they didn't have that. They spent awhile researching where they could get more vanco, while we worried that we again might have to go home early to continue treatment. Fortunately, they found another source of vanco. So they promised we should get the rest of the prescription tomorrow. We plan to drive to Haleakala (Maui's dead volcano crater) tomorrow. So we'll return to the clinic pharmacy on Thursday morning. I sure hope they actually have my prescription. If they don't, we will miss our chance to change our plane reservations to fly home before the weekend, if we need to return to Seattle to continue vanco treatment.
So I'm supposed to get the rest of that vanco prescription tomorrow (or Thursday), but we've encountered so many glitches in this vancomycin adventure that I'll believe it when I have the vanco in my hand. LOL Meanwhile, the cramping pain and bloating is slowly subsiding. Each day the pain is less. Unfortunately, the longer I take full strength vancomycin, the less good bacteria I have in my intestines. So I have less vitamin K for blood clotting. I bruise VERY easily (just clapping my hands causes bruises). When I cut myself shaving my legs, I bled for over 5 minutes. New bruises appear daily in weird spots. However, bruises are tolerable and reversible. Death from sepsis caused by c-diff damage is irreversible.
The worse part of taking vanco full strength is sticking to a evenly spaced schedule. I just missed my 2nd pill, because my husband with his alarm system watch is not here. I took the pill 45 minutes late. However anytime less than 6 hours apart is good. I'll just do another 5-6 hours from now or 5:45pm. Then my last will be fairly close to bedtime.
I don't take the vanco with food now. I just drink a big glass of water. I get a little nauseas in the morning after going 8 hours w/o vanco, but I just drink ginger tea and I'm fine. This is an expensive but easy drug to take. I just need to taper long enough to kill off all the c-diff spores this time.
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4 comments:
Oh, Sue! I hope they have your vanco for you tomorrow as promised and that you don't have to try to fly out to go home early, etc.I also hope your symptoms continue to abate. Sorry to hear about the runaround, etc. I hope you have had lots of good times otherwise.
Thanks, Lisa. I finally got the rest of the prescription of vanco yesterday. (I'll take the last of the first part of that prescription today. So I would be out after today, without the rest of the rx.
We are running out of things I can safely do now. Being on vanco means I kill off good bacteria as well as c-diff. Since good bacteria manufacture 50% of our bodies' vitamin K, I get low Vitamin K symptoms, like frequent, spontaneous bruises and prolonged bleeding from cuts and scrapes. I can't risk even slight bumps from ziplining or horseback riding.
So we will go to the beach and do putt putt golfing again as well as shop and eat in fantastic restaurants during our remaining days here.
I hope you enjoyed vacation and arrived home safely. And that you are feeling better all around...
Thanks, Lisa. Despite the stress of getting a vanco prescription for that recurrent c-diff, we did enjoy our vacation. We actually got home early Wednesday morning. Once we got on the plane our return trip went smoothly. We played 'go fish' with cards showing Hawaiian fish. We ate our packed lunches (instead of buying dinner or eating the allergen laden free dinners). We loved the inflight movie. When we reached the baggage claim, our bags were there. We got the first taxi in line to go home. We went to bed shortly after midnight and slept a solid 8 hours.
Then we began 'catchup' with grocery shopping, unpacking, attending a musical, preparing for Halloween, cleaning up the vegie gardens, etc. I still haven't sorted the laundry from the dirty clothes we brought home. That's tomorrow's project.
I'm feeling better now that I'm on the 2x a day phase of vanco. With only 2 daily doses, more probiotics survive. So I don't bruise as easily or get prolonged bleeding from cuts and scrapes. I'm also eating more dark leafy vegies (like kale and brocolli) to restore my vitamin K levels.
Best of all I don't have so much gut pain when I have any gas or bloating. Previously any little bit of gas caused intense gut pain, probably because my intestines were inflamed from c-diff damage.
Nevertheless, I requested prayer during the healing service at my church tonight. I STILL don't know whether this tapered and pulse dosing treatment will completely rid my gut of those dreaded c-diff spores, which morph into bacteria after treatment ends. However, I plan to stretch out the pulse (skip days) dosing for much longer this time. We'll see, but my recovery is totally in God's hands now.
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