Wednesday, June 22, 2016

I'm Fixed!

This is day 5 of sporanox. Despite warnings from the pharmacist that I would feel dozey  - maybe even too dozey to drive - I am actually feeling very perky and energized - optimistic even. It's almost acting like an anti-depressant. Not that I was depressed - but I now feel like my old self - back in the days when I never got tired.

Yesterday I saw my asthma doc. His respiratory therapist did the usual tests and found that my lungs are 101% of normal. 101%! Better than normal!

My doc didn't reduce my meds as I had thought he might and I need to keep on taking sporanox for 2 months. I'm scheduled for another blood test in a month to make sure my liver is ok. My guess - I'll keep on taking anti-fungals for a long time. We'll see.

I will  have exacerbations in the future - like the one I had in March - probably brought on by a virus. But I now have the means of getting back to normal without a big panic. 

My New Action Plan: 
  • My new normal maximum peak flow is 450. 
  • If I drop down to a maximum pf of 350, I take azithromycin. 
  • At 200, I take 50 mg  prednisone for a week with a long tapering down period. 
  • If my sinuses or my ears get inflamed, I take pulmicort twice a day for a week. 
The overall picture is that all my issues are reactions to fungus. I do not have a fungal infection - just a sort of allergic reaction because the fungus does not move out. (Why? I don't know. Sick cilia? I don't know.) My reaction to fungus can be calmed by symbicort and pulmicort on a regular basis and, when exacerbated, azithromycin, more pulmicort and  prednisone. Xolair also helps keep things calm. 

So - I can go in the garden and walk in the forest. I can even go on international trips - just take my action plan meds with me and don't worry. Yippee! I am fixed! I'm free! I'm not afraid!
 

Monday, June 20, 2016

Better

I am definitely feeling better than I was a few days ago. My most annoying complaints were itchiness and deafness-effusion. These have both improved - though not gone away completely.  Possibly the sporanox is helping. Or maybe I would have been getting better without it. Fortunately I don't seem to have any scary side-effects from the sporanox. In fact I think I am less loopey (rather than more so).


I had  enough energy and enthusiasm yesterday to make a lot of art cards and am happy with the results - no borders - much cooler. The one above is "After Christmas."

Tomorrow is my appointment with my asthma specialist in Vancouver. My peak flow never dropped throughout my recent "fungal attack" - so I don't think it got into my lungs. He said previously that we would set up some tests after tomorrow's appointment to see if anything has changed. Since I had blood tests on Friday (for the sporanox) , we may be a bit ahead of schedule. The result may be that I can eventually cut back on some meds - especially if they are not doing much good and/or causing side effects. .

This morning I bought 3 new pairs of running shoes and a new pink hi-vis running jacket. They're all for walking - not running. Maybe buying that many shoes sounds a bit loopy - but I often can't find anything. So when I found all those beautiful and comfortable shoes - orange, pink and blue - I decided to buy them all. I will look really active when I see my asthma guy tomorrow.

We have a NAPA meeting at 4 pm PDT today. I am ready but will take the dog on good walk first - right now.

Saturday, June 18, 2016

Sporanox

I was able to see my sinus doc yesterday when he was checking Elspeth.

Elspeth still had some goop in her sinuses though much less than last week. He flushed her sinuses anyway and said she should have another blue light therapy in a couple of weeks. Not good - not terrible. A bit of a bummer.

For me - once again he saw fungus in my sinuses. The inflammation and gunk was less than Tuesday - due to the 2 doses per day of pulmicort. However, my ears seem to be even more effused than before. To me effusion means my hearing is poor and I feel a sensation like the sides of my head are stuffed with cotton baton. I cannot "pop my ears" (equalize pressure)  no matter how I try. Effusion is usually not painful - but annoying and worrying because it means something not good is going on. He looked in my ears and could see my eardrums were stretched and, I think, there was fluid behind them. I am also itchy - though a bit less than Tuesday.

I explained that I had finished my 7 month fluconazole prescription, from my asthma doc for candida found to be growing in my lungs, fairly close to the time these symptoms had started. Mike had wondered if there was any connection. In other words, did fungus come back because I had stopped antifungal medication? I guess he thought that was possible - he prescribed a new and stronger antifungal called sporanox. It is in the same family as fluconazole and is called itraconazole. Because it is stronger, it may be harmful to the liver. But, because I have taken fluconazole with no side-effects, I am likely to tolerate this new medication just fine. I had a blood test at St. Paul's to check my liver enzymes before we left.

We drove to the ferry and missed the 5:20 to Nanaimo because it was already full. We had to wait outside the ticket booths until the 5:20 was loaded - then we got through to the 6:50 line-up. Elspeth, heading for Langdale, also missed her ferry because it was full. She had to wait until 7:50 - a long wait for someone on the way home from seeing their specialist. She only got through the ticket booth about the time we were beginning to load - so we didn't have tea with her at the Good Karma cafe. The reason the ferries are full is because it's Friday evening and tourists and weekenders are leaving the mainland for the charms of Vancouver Island and the Sunshine Coast.  You can't really make a reservation ahead of time because you don't know when you'll get back to the ferry.Today we had to wait a long time to get into see our doc. Other times we get in super fast.

Once on the boat we were a bit annoyed to see that the cars were not pulling up to 24 inches behind the one ahead. People were leaving big gaps and reducing the number of vehicles that could get on board. Oh well, they were tourists and didn't know better. We got a sandwich and an asian wrap and sat down to read. There were tourists wearing red tee shirts with "Canada "in big white letters on the front. Elspeth sent Mike a text saying "I unreasonably hate tourists." Mike answered "They don't follow the 24 inch rule," . She replied "May they all choke on their asian wraps and iced coffee." Mike responded "And may they spill it on the Canada tee shirts." The text banter cheered us all up. 

Finally in Nanaimo at a little after 9 pm, we went to the pharmacy and picked up the Sporanix. Things to watch out for - pain in the upper abdomen (liver) and dark urine. Nausea is pretty common  It also can make you a little more dopey than normal - plus all the other terrible things most medications can do. I took the first dose this morning at breakfast and so far so good. Of course I am not suddenly better - in fact I'm more deaf than ever if my conversations with Mike are any indication.  Hopefully some good effect will have happened by Tuesday when I go back to Vancouver to see my asthma doc.

It's raining a lot - too much for an enjoyable dog walk. We are invited to a barbeque near Chemainus tonight. I think it will be cold and wet so better dress warmly. 

Wednesday, June 15, 2016

Allergic to fungus

I saw my sinus doc in Vancouver yesterday. I had not been feeling well so was glad that yesterday was my regular 2 month check up.  I was itchy as well as having a bit of phlegm, deafness (caused by effusion.) and some aches and pains (maybe caused by doing weight training.)

He looked into my sinuses with his camera and said he saw fungus. Since I had my eyes shut, I did not see what was showing on the screen so don't know what fungus looks like. His diagnosis was that my sinuses are basically in good shape but I am having a reaction to the fungus. I don't have a fungal infection - just a reaction.

He suggested I had picked the fungus up in the forest or working in the garden.  Those are things I do almost every day so I'm sure he's right. In fact, where we live is pretty much a garden in a forest since there are many firs and maples on our property - some very large. So - no walking in the forest or gardening at least for a few days.

This is beautiful Linley Valley - just up the road - where I often go walking. I definitely will go there again - but not until this reaction goes away or some other cause is found. I do wonder if finishing the fluconazole (an anti-fungal) at about the same time the reaction started has anything to do with what is going on. Time will tell. I'm not so itchy today and my peak flow is still very good.  Lucky the beach is not too far away and the dog is happy to walk anywhere I take her.

Monday, June 13, 2016

What now?

What now? It is about 75 days since I finished my last prednisone burst and about 16 days since I finished my fluconazole - which was intended to kill the candida yeast that was found to be growing in my lungs. I was feeling good - good enough to go with my daughter to her recent sinus appointments.

My daughter's sinus troubles started about 10 years ago when her kids were still young. This year one of the is graduating from high school. She had never had any sinus infections until she suddenly found she had a bad one high up behind her forehead. The problem was that if it got any higher, chances were it would drain into her brain. This could have resulted in death or brain damage. To prevent this, she was sent to a hospital on the mainland and given tons of antibiotics. Unfortunately this went wrong - because she developed a an antibiotic resistant c. difficile infection which required even more antibiotics, etc. She was eventually sent home but with no follow-up care and she was off work for months. Then things flared up again. Fortunately, this time she was referred to our sinus doc and she has been going to see him for the past 9 years. She has had 3 sinus surgeries and a revision but is still prone to problems. A few weeks ago she was advised she needed to go in for a checkup and clean out every two weeks to make sure things didn't get really out of hand again.

Unfortunately, on one of those appointments our sinus doc found she had an antibiotic resistant biofilm (bateria and fungus) in the only part of sinuses that still don't drain properly. The treatment was a very powerful form of blue light therapy. Lots of people get blue light therapy these days to prevent bacteria in their sinuses from infecting the site of a surgery. A blue light is shone up their nostrils and it is very effective in reducing infection rates. Her therapy was far more difficult. It involved blue dye, a balloon inserted into her sinuses, and 4 minutes of 8 out of 10 level pain to kill everything growing in the sinus. 4 minutes on each side, that is. The only problem with this treatment is that, because everything is killed, it is difficult to re-establish good bacteria and challenging to keep bad stuff out. It is still considered experimental and has to be paid for by the patient. At her 3rd follow-up appointment last week, our sinus doc found she had something growing in her sinus - indicated by yellow goop/pus. Pus is white blood cells that have been killed while fighting an invader. So far we don't know what the invader is.

Mike and I accompanied her to that appointment and saw the goop on the screen. It looked like a tiny bowl of yellow soup. This was not good  news. But nor was it bad news. It was washed out and antibiotic gel inserted - so hopefully it is gone. She still needs to get some good bacteria growing.  She is lavaging with probiotics normally used for gut problems and hoping something good will stick.

The weird thing is that, on Saturday, the day after her appointment, I found that I had yellow goop coming out of my left sinus. I had become a bit deaf about a week before - which, in the past, has been an early warning of impending sinus problems and then an asthma exacerbation.  I had become very itchy too - especially on my face and neck. At first I had thought it was sunburn or a reaction to suntan lotion.  The odd thing was that Elspeth said she had had red cheeks before her yellow goop was found. Also - my digestion is a bit screwed up. Elspeth said she felt nauseated.

What now? Have I given something to Elspeth or have I caught something from her or our goops completely different? Maybe they are the sort of allergenic eosinophilic sinus problems I wrote about on May 14. If so, will she get back to normal? Will I? Am I on the verge of another asthma exacerbation?

The yellow phlegm turned  into dark greenish globs of post nasal drip this morning and no longer comes out when I blow my nose. I'm a bit less itchy. Am I getting better? By chance, I have my regular appointment with our sinus doc tomorrow. Hopefully he will be able to figure this out. I am not so sick I can't take the dog for a walk - so will do that again soon.

I must insert a photo to cheer things up:


It's my most recent abstract painting - loosely based on a migraine aura. What - another medical thing? Am I just a hypochondriac? Next -  take the dog out and then get painting again.

BTW, I am now the chair of a NAPA (National Asthma Patients Alliance)  working group which is looking into rebranding NAPA to fit better with the ASC. We had our first phone meeting on the ferry on the way to Elspeth's appointment. Hopefully we can make a difference that will benefit those 3,000,000 Canadians who also have asthma.

One more thing - my 8 year old grandson is one of the 3,000,000. He is currently suffering an exacerbation which makes him cough at night and sometimes during the day. His parents are very watchful and they are all doing the best job they can of managing it.