My Illness : A new medicine

This post is the ninth in a series on my Necrotising Aspergillus Pneumonia illness.  Where have I been?  On a journey, to say the very least.  If you’d like to start from the beginning, start here.

The following are excerpts from my Facebook page between 10/1/14 – 12/3/14:

“Oct 1st At NJH again.  I had blood work here a little over two weeks ago and the Immunologist called and said that he just wanted to order a few more blood tests while I was there. Actually he took two tubes away from the image below, so it was only 10!!! That’s a few more?!  I’m seeing the ID doc for the first time.  My Pulmonologist put off driving to Aspen to come in and see me on a non-clinic day since I’ve been a little sick.

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Oct 9th NJH ID doc just called me at 6:30pm from his home after researching a different med for me. Gotta love their dedication. More tomorrow.

Oct 10th My pharmacist just called me. My Infectious Disease doctor at National Jewish wants to change my med ASAP because he’s concerned that my neuropathy is getting much worse in my feet. My left foot actually dragged a few times when walking tonight. There is only one other med that I can be put on and its even more rare than the one I’m already on. They can’t find it at any of the Walgreens or Wal-Marts in the area so they will need to order it. Even though our insurance is kick ass, it only covers the liquid version. With no insurance coverage for the pill form, it would have been $10,000 a month!  Lord I hope the liquid doesn’t taste as nasty as the vancomycin I had to have in liquid form when I had c-diff in 2005 (it was basically the IV form I was drinking)! I’ll need to take 5 ml 3x/day vs 1 pill 2x/day. Double the price. Poss side effects much worse than other med, but since I had tons of them on the other stuff, he’s hoping I do well on the new one. Fingers crossed that if I get any of the bad effects, they’re transient like some of the ones that I had on the last med.  That one started with high fevers daily, severe night sweats (both stopped after a few weeks), nausea (controlled with ginger), fatigue, now neuropathy. Next CT and appt w/Pulmonologist is in December. I will be on the new medication until there is no more change between CT scans. Ready for a new medicine adventure – bring it on!

Oct 13th Please excuse the messy black marks on the images below.  I had done a quick edit job for FB purposes.

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Being a cherry flavored liquid, not so bad. Just a little icky after taste. Unlike the last med, I can take this one with food which is very cool – I don’t have to worry about setting alarms for an hour before I eat or an hour after I eat now. The problem, a manufacturers backorder issue. I had to drive to the next town over to get this. All they had was a one week supply. The closest other place that had a weeks supply was in Denver. “Supposedly” my pharmacy should have more on Thursday. And thank God for insurance covering at least the liquid version.

So the next plan of action is to have an EKG and blood work in a month or so to see how I am doing on the new med. Then heading back to NJH in January to have a chest CT and appts with Pulmonologist and Infectious Disease docs.

Update: Not so cool eating with food. It has to be taken with a full meal which means I have to eat at times I am not used to. I actually have to set my alarm to get up in the morning to take my antacid – which I need because (I’m back on) the ginger is giving me heartburn and I am taking that for the nausea caused from the medicine – then wait a half hour to have breakfast. I have to eat lunch and dinner two hours later than I’m used to. Ugh! It was better just having to set an alarm an hour before I ate or an hour after!  I also NJH to say that I know 8 hrs is 3x/day, but would every 6 hrs be sufficient?  They said every 5 hrs would be ok.  So now as long as I wake up at a decent time, the rest of my meals should be at decent times.

Oct 18th So my pharmacy just called me and asked how I was doing. I said, “funny, you ask”.  I’ve had a feeling of someone drilling in my gut since early this morning, the D word, backache, and nausea. Then comes the fever and chills. All side effects to my new medicine that I’d been on for about five days. The pharmacist says she was calling to make sure the med was okay with my system before she filled a full months prescription. She didn’t want to fill a $5,500.00 script if I’m not going to stay on it (my cost $20). I have about 2 more days left of the other bottle so I told her to hold off. I was on the phone with a pharmacist early this morning and the NJH on-call people. My husband has a list of stuff to get me from the store to see if i can stop some of the symptoms that I’m having. The thing is, when I came home from the hospital with the old med, I had transient symptoms for several weeks – high fever severe night sweats…sigh. 95% sure it’s the med. We’ll see soon enough. Had a little pity party for myself a little earlier – crying. It’s just so darn frustrating considering I was just feeling so good besides the neuropathy. NJH doctor wanted me to go to the ER since it’s a Saturday, to make sure that it’s not my liver or pancreas causing these symptoms. All labs look good. NJH ID doc took me off the new med to see if I get any better. They zofran in my IV and it worked, but only for less than an hour and a half. They even tried phenergan. I wanted to try it before I went home because I haven’t been on it since around 2005. It was my go-to drug when I had CDiff. I think it makes me more loopy with age so I will probably get the zophran filled tomorrow. Still unable to tell if it is medicine side effects or a virus.

Oct 19 Read the lab report to my doc. He’s thinking viral since my body is aching today w/a bad headache and because of what the lab results say. When I’m up and about, they want me back on the new med to try it for 3 months before my next CT. Viral I can deal with!

Oct 25th This is what $5,500 looks like (my cost $20) for 1 mo. If my insurance would have covered the pill form, it would have been $10,000! Giving it a try again. Fingers crossed!

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 Nov 3rd Haha! Completing Open Enrollment with my husband’s insurance and he wants to up my life ins policy, because he likes to have the best coverage. I need to complete a health form. Question: “Have you had any respiratory issues within the last 5 years?” Not too fishy, huh? They’ll probably think that I’m either (A) dying or (B) he wants to off me!  (Update:  It wasn’t worth the hassle.  They wanted me to produce medical records from the last five years within a weeks time.)

Nov 16 Lord! I called in 2 weeks early to refill my med since it was so hard to get last time, and they told me there’s a manufacturer unavailability issue again! Thankfully I have about a week left.  I ended up calling NJH’s pharmacy in a panic and they were able to get me a months supply from their supplier.  They even overnighted it – for a cost of course.

Dec 3rd Woo hoo! 51 bottles are available from the manufacturer – NATIONWIDE – but my pharmacy does not want to stock pile for me because others probably need it just as bad, but they will order me 2 months worth! 

Almost there – but the journey is not over!  This entire series, which is still an ongoing issue, consists of separate posts to divide them into bite size reads for you.  You can read the next post here.

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