Tuesday, August 30, 2016

A cold coming on?

So it is the end of August and I seem to have a cold coming on.  I hope this is not a big deal. Mainly I am quite hoarse and my right ear is effused and probably infected. The carotid artery sometimes pulses away and I am a bit deaf. Some crud came out so I hope I am on the mend.

I also have an infected tooth - on the right upper side at the back - pretty close to my ear. I saw the dentist yesterday and am on penicillin. He said my tooth problem is not related to my ear problem - though I think the pain in my cheek could actually be more from the tooth than my ear. Of course it could also be my right sinus - since the pain - though mild -  actually feels as if it is behind my right eye.  Tomorrow I see my dentist again. I'm not sure what he will do - I guess I need a filling or something. The tooth challenge is that I need to keep it in case I need to have my 'bridge" redone. Or I could get a couple of implants. On Saturday i see my dentist's son who is a periodontist and may have some ideas about the whole thing. Piffle. This is making me dopey.

When I saw my sinus doc a couple of weeks ago, my sinuses were perfect and I cut back my sporanox (anti-fungal) to one pill a day. However, my peak flow had dropped down a few days before and I started getting a little phlegmy - so after a week I got his approval to take 2 sporanox per day again - at least while I was on my RV trip. Since I am not better, I emailed him yesterday and confirmed I should keep on taking 2 - at least until I see him and/or my asthma doc. Has the sporanox lost its magic?

On the family front - my poor 17 year old grandson is having a very bad time. He had a fairly major sinus surgery at the end of July - to fix his broken nose and also deal with his ongoing sinus disease. After he got the stints out, he seemed fine. Unfortunately things went off track. He started to feel really sick while we were visiting -  a lot of nasal discharge, headaches, coughing and then diarrhea. At first it was thought he had strep. Then it was thought he was getting whooping cough - because an unvaccinated friend of his had been suffering from from whooping cough for a month and others were catching it from him, Then it was discovered he had a "c difficile" infection (hard to treat) plus a fairly easy to treat sinus infection. He had probably had the c difficile since the surgery and maybe because of the antibiotics he took for the surgery. It is scary. He has been getting IV antibiotics at his local hospital for the past 4 days. I do not know the news today.

My daughter (his mom) is not OK either. Her sinuses have not got completely better - though the blue light therapy seems to have killed off the bad bioifilm. We came home a couple of days early from our RV trip so we could offer a bit of moral support. That was actually good for me because it gave  me the chance to see my dentist and my cold really did not start until we got home. Piffle. Double piffle. 

Monday, August 15, 2016

Compression Socks and Moon fFace

Lots of people wear compression socks these days. I think it is a bit of a fad like gluten-free diet for people who are not celiacs.

I have been wearing compression socks for about 20 years - because I have to - not for a fashion statement. I had 2 deep vein thrombosi (DVTs) in 1997. My doctor caught them and I took blood thinners to prevent the clot from moving into my lungs (causing a pulmonary embolism). I had no really bad repercussions - except that my left leg swells up if I don't wear a compression sock. I don't think this is harmful but it is scarey to look at.

Now I am getting swelling in both legs - though the left is much worse. It could be from the prednisone and other corticosteroids. The Mayo Clinic lists lower leg swelling as a side-effect of prednisone - so I'm not just making this up.

Most of the time wearing compression socks is not a problem. I just wear them under my pants.  But it is a pain in the hot summer weather when you would like to wear sandals or at least short socks. And the swelling seems worse when the weather is hot. So I am now wearing my long socks with shorts and bright coloured running shoes. I think I look pretty odd - especially when I wear the pink ones from Dr. Segal!.


 I am also beginning to think I might be getting a prednisone moon face. My mother got a very round face from taking a small prescription of prednisone for many years. I thought she looked like Chairman Mau. I think I am looking more and more like her. My cheeks and chin are rounder than I ever remember and I doubt that it's the 3 lbs I've gained now that I am eating like a normal person. I'm still pretty petite! Eeks

I am going to talk about this with Dr. Javer tomorrow. It may be just another aggravation of severe asthma but I don't have to like it.

Tuesday, August 9, 2016

Fitbit

Mike bought me a fitbit on August 1 and I set it up the next day and have been using it ever since. My main aim is to walk 10,000 steps per day. I used to try to measure this with a much cheaper pedometer which I have had for years. I thought I had lost because it always popped off my waste band when I got changed, etc. How many times have I seen it skittering away in the BC Ferries ladies Room.

So now I have a fitbit alta. It is a bracelet with a watch face that you wear facing inwards. You do the setup on your smart phone. The most tricky part is getting the darn thing "buckled up."  There is no real buckle - just two little metal posts that have to be pressed into two small holes. I find this really hard to do because the skin on my wrist is a bit loose and I tend to pinch myself every time I try. However, I have persevered and seem to be getting the hang of it.

So far I have found it very motivational.  When you hit 10,000 steps, the fitbit buzzes and lights up. I have walked more than 10,000 steps most days since august 2 - with a couple of almost 9000 plus days.  I got a message on my phone just now saying I had completed a marathon - 42 km in one week. 

Regular exercise is very important for everyone especiallpeople with severe asthma - so this is a very good asthma story. More on my fitbit later.


Eyesight and asthma

I have to admit that my eyesight has really gone down hill lately. My main problem is that I am developing cataracts especially on my "good" right eye. People of my age do often get cataracts but people taking prednisone are more prone to getting them - so that is the asthma connection. I have also developed astigmatism which I never had before. 

For many years I  dealt with my declining eyesight using wonderful multi-vision contacts. However they are no longer useful -  I cannot make out detail whether close or far. They were convenient for painting, gardening, walking, cooking (with readers nearby) but impossible for driving. I tried a new prescription of progressive glasses to replace them - but could not get over the distortion. In fact my optometrist tried 4 different progressive layouts - but none worked for me.


In the end I got some new readers and new distance glasses. The first time I used my new distance glasses I felt like I was in the Imax with 3D glasses - everything felt hyper real. They are great for walking and OK for gardening. I have yet to get up the courage to try driving. They are not any good for painting or computers. My readers only allow me to read at a distance of 12 inches which pretty close. They certainly do not work for computers, cooking, painting, etc. either.

So - I am now getting a third pair of glasses for intermediate distance. I am looking forward to these as I hope I will be able to read some stuff - if I hold a bit away from me - so won't be tied to the 12 inches now allowed by my readers. How am I doing this on my computer? I have my laptop on top of a stack of books with the screen 12 inches from nose and I am typing on the keyboard way below. I increased my font and went to Helvetica which seems most readable. 

My new problem is managing all these glasses. I've tried hanging a pair around my neck and wearing a pair - but this is prone to paint and food getting in the hanging pair. I've tried having one pair in a soft case in my pocket - which limits me to clothes with pockets. I am OK with 2 sets. What happens with the third set? 

I put in the picture of the jelly fish which I took at the Vancouver Aquarium a few weeks ago. Are they not spectacular! Perhaps they can help with my current painting which is not going at all well. People get cataracts, life goes on - jelly fish are taking over the ocean!

The IBS Side of Life

While I am dealing with my asthma, Mike is dealing with his IBS. Well I am dealing with it too since IBS is definitely a family problem.

IBS stands for "irritable bowel syndrom." In my view it should stand for "irritable bastard syndroe." It is a truly difficult syndrome - not well known by most people yet very common. It seems to have 2 effects. First, the bacteria in EBS people's gut do not deal well with many common foods. Instead of helping digest these foods, the bacteria cause bloating, pain, loose stools, leakage, etc. Second, the gut's emotional centre reacts to these bacterial problems by convincing the brain to feel depressed, sad and even angry.

The good thing about IBS is that it does not cause physical damage to the body - as for example Crohns Disease or Celiac Disease do. The other good thing is that IBS can be managed with the right diet - but finding and following the right diet is a fairly daunting 

About 10 years ago researchers in Australia came up with the theory that IBS was caused by high FODMAP foods. Our GP told us about this diet and Mike and I have been working on following the right low FODMAP diet for him for about 9 months. We are usually successful at home - but going out for dinner or visiting people is very difficult because so much of the food that causes Mike and many other IBSers is common and even healthy for other people.

Saturday was one of those difficult days - but I think we are getting back to normal. BTW, I do not have IBS - I have a cast iron stomach with excellent bacteria doing their job properly - but nonetheless I pretty much follow the low FODMAP diet so that Mike does not mistakenly eat stuff that will cause him harm. Recently I bought my own salsa - with onion - not for him to touch.

The most problematic foods for a person with IBS tend to be garlic and onion. These foods are basic to so many cuisines that it is almost impossible to go out to a restaurant without encountering them. Thai restaurants are no exception. Can you provide a dish with no garlic or onion. Oh yes said the waitress.  But when the meal arrived - the waitress just mentioned there was garlic in the peanut sauce.  Mike should have sent it all back - but he didn't want to make a fuss so he just didn't eat it. The other problem was that, because I wasn't sitting beside him, he ordered a dish with broccoli - not good.for many IBSers - because it is in the cabbage family and cabbage is difficult to IBSers to digest. So not a good dinner for Mike.

Here is the basic list of what Mike can and cannot eat:

OK: meat, fish, sausages without onion and garlic, butter, potatoes, rice, bread, milk, yogurt, oatmeal, chard, kale, carrots, green beans, corn, hot chillis, honeydew, oranges, lemons, limes, kiwis, strawberries, raspberries, walnuts, almonds, cane sugar, peanut butter, pop corn, rice cakes, mint tea, white tea, cranberries, a small amount of coffee with lots of milk.

NO:  foods processed or preserved using corn sugar (that includes everything processed these days including bakery cookies and other bakery products that do not specify using cane sugar), all alcohol, carbonated beverages, juice, garlic, onion, stone fruit (e,g, plums apples, peaches), grapes, peas, cabbage-related vegetables,  honey, dried fruits, dried beans, fennel, tomato paste, chocolate, cantaloupe melon, blackberries, cashews, pistachios, English tea
 
Well, we are learning. I think it is too bad that more people do not understand this syndrome because it is very debilitating and very common - yet relatively easy to solve once you know, As for going out to a Thai restaurant - I think he will have to stick to plain rice and soy sauce in future. Period.

Wednesday, August 3, 2016

New bed

Yesterday we went shopping for a new mattress for our bed. The idea was that our current foam mattress is 25 years old and needs to be replaced.  Mike thinks it is contributing to his ongoing neck problems. This expedition led to a lot of other things being bought including new wool pillows, pillow covers, 3 duvet covers and sheets, mattress cover,  and even a new phone for me. This post is actually mainly a test of my phone. Can I  get a picture? Yes I just took it.

Monday, August 1, 2016

BC Day - Feeling Good

Today is BC Day - August 1, 2016. A lovely sunny but coolish day. My breathing is very good and I am feeling fine. We spent the last few weeks RVing, boating and running our "granny day care" for our 2 youngest grandsons. We had a ton of fun with them - both at our place and their house. A highlight - their swimming pool. I gradually got into swimming and would like to do more - though I hate the burning of the chlorine. My last attempt to swim at our local pool (a few months ago) resulted in a very unexpected asthma attack - exercise-induced I guess. It scared me as I have never experienced that type of attack before. I realize I will need to be careful in a public pool - but sure enjoyed Rob's lovely backyard beauty. The kids went swimming 3 times a day and their improvements were amazing.

I have now taken sporanox for 6 weeks - the only side effects seem to have been a higher energy level (though maybe that is the result of the cure), better sleep, a bit of constipation (finally fixed by eating bran buds at bedtime) and a slight feeling of bobbing and shakiness - maybe because I am pushing myself more than I could in the pas - maybe because of the swimming and boating. I've had 2 blood tests so my liver must be coping OK.

I have gained about 4 lbs - I've been eating a lot compared to when I was sick. Back then I did not have the energy to eat a normal amount of food. I got pretty gaunt and lost a lot of muscle. My friend with COPD is dealing with that now - and has become excessively thin. I do not want to gain much more weight unless I know for sure it is muscle.Today I did weight training and used 8 lb weights - doesn't sound impressive but is my maximum weight for 15 reps right now. Hopefully I can build up to at least 10 lbs fairly soon.  I also did major work on our garden pond and set up my new "fitbit."

The fitbit is intended to replace my pedometer and encourage me to get lots of regular exercise - at least 10000 steps per day. It does have a clock face so I will wear it instead of my watch. The amazing thing is that I am setting it up myself - not asking Mike to do it. This is actually a major step since, when I am sick, I can't think clearly or calmly when I try to deal with technology - but today I can. . Right now my fitbit is charging - so I won't get any real results until tomorrow. .

I see Dr. Javer on August 16 - the last day of my sporanox. I am wondering what will happen when I stop taking it.  Will I just get sick again? Although i know I have an allergy-like reaction to fungus I don't know how the sporanox fits in. Fungus is always amongus so what happens when I don't take it?

Wednesday, July 13, 2016

Feeling fine some more

I have been feeling fine lately. It seems my basic problem all along has been my allergy-like reaction to fungus. Now that I  am taking sporanox plus all usual other stuff (symbicort, spiriva, pulmicort, xolair) I feel normal - no phlegm or coughing, no congestion, no deafness, no itchiness. Tomorrow I  get my sputum induced and my blood tested to make sure my liver is ok. I could get another exacerbation on one day - Probably from a bad virus - but have a plan to handle that. Yippee!

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. 






Saturday, May 14, 2016

Science behind my asthma

I just found an article that seems to describe my type of asthma. It is Jantina C. de Groot, Anneke ten Brinke and Elisabeht H,.D Bel: Management of the patient with eosinophilic asthma: a new era begins.

I learned from the ASC conference that I have adult-onset eosinophilic asthma. According to the article, this is an uncommon but well-defined asthma phenotype. This asthma phenotype can be identified by "typical symptoms (few allergies and dyspnoea on exertion), typical lung function abnormalities fixed airflow obstruction, reduced forced vital capacity and increased residual volume),typical comorbidities (nasal polyposis) and a good response to systemic corticosteroids." This is me! 

This is the part that convinced me this article was very relevant for me: "Another characteristic feature of late-onset eosinophilic asthma is chronic rhinosinusitis with nasal polyposis[76]. The association between peripheral blood eosinophilia, nasal polyposis and asthma has been recognised for many decades, in particular in combination with aspirin sensitivity [30, 77, 81]. This association has been confirmed in a study in adults with difficult-to-control asthma, showing that severe sinus disease was a strong independent predictor of persistent eosinophilia in blood or sputum [54]. Mucosal inflammation in these patients might extend even to the middle ears. In 2011, a newly recognised middle ear disease, eosinophilic otitis media, was described, characterised by a highly viscous, eosinophil-predominant middle ear effusion causing progressive deterioration of hearing. This otitis is associated with asthma and nasalpolyps, and responds to prednisone, whereas other treatments for otitis media failed [82, 83] Again this is me - my damn effusions that only go away with prednisone - because they are eosinophilic otitis media.

The article then goes on to recommend that patients with this phenotype can benefit from various monoclonal including "Omalizumab (Xolair) is a monoclonal antibody that binds IgE and is, to date, the only biologic therapy approved for asthma." which I already take. However, there are others that show promise. "Lebrikizumab and tralokinumab are both humanised monoclonal IgG4 antibodies to IL-13 and potent inhibitors of its function."

OK - I have to admit, it's all a bit over my head and I need to read it more carefully and discuss it with Mike to figure out what it means. But I think it is a good start to understanding the scientific approach to my severe asthma.

Wednesday, May 11, 2016

ASC Conference

Mike and I went to the Asthma Society of Canada Conference  in Toronto last weekend. Here is the link http://www.fightingforbreath.ca/presentations/ for a video of each talk plus the accompanying slides.

I thought the most interesting presentations were by Mark Fitzgerald and Param Nair. Dr. Fitzgerald talked about the difference between uncontrolled asthma and severe asthma.

Uncontrolled asthma occurs when people are not taking the appropriate medications. It can become very serious and patients can end up in hospital. Why would patients not take the right medications?
  • The patient doesn't have a GP or never thought their asthma was serious - so never had a diagnosis and hence no medication was prescribed
  • The doctor didn't do enough analysis and prescribed the wrong medication
  • The patient couldn't afford the medication (we need universal pharmacare so everyone can get the medication they need)
  • The patient didn't realize that they had to take their medication even when they were feeling fine
  • The patient simply quit taking the medication to see what would happen - this is more common than you would think and can have frightening results. 
Severe asthma is when a patient is properly diagnosed, taking all their medications and still having exacerbations and needing prednisone. Some people need predniosne every day - other people need it in short bursts to end an exacerbation.  I have severe asthma. This is why I had an exacerbation in March after catching a cold - despite taking Xolair, teva trimel, floconazole, symbicort, spiriva, and pulmicort. But, because I am 100% compliant, the symptoms cleared up with prednisone and azithromycin without ever getting completely out of control. At least that is how I understand it.


Dr. Nair's was given an award by the Asthma Society for his break through work. His talk was very important - but  seemed to be aimed at people who already knew a lot - ie doctors. I The main thing I, as a severe asthma patient, understood was that when our body is under attack, our bone marrow produces different kinds of white blood cells to fight the invader.  In a person with asthma these white cells appear in the sputum. Eosinophils in the sputum are a sign of an allergic reaction and can be treated with corticosteroids and prednisone. Neutrophils in the sputum are a sign of infection and can be treated with antibiotics.  There is a fairly simple test that any lab should be able to perform to determine what is in the sputum. Most doctors do not do this test and they should. Otherwise they will prescribe unnecessary medication or ineffective medication. Lucky for me, my specialist does all this and I think he is as cutting edge as Dr. Nair.  I am trying to get a better understanding of this scientific approach and will post again when I know a bit more.

I was on a patient/doctor panel which was intended to give the audience an understanding of doctors' and patients' different perspectives on the disease. It was very rushed and I don't think it actually worked. However, preparing for it - which I did for hours and hours - did give me insights into my own story. Now I just need to figure out the white blood cell thing and I think I will know a lot more.

The last session at the conference was a panel on the need for fair pharmacare. I will write up my thoughts on that at a future time. It is a tough subject with many emotional, economic, business, societal and  political implications - not to mentions society's view of the purpose of taxation, who should be getting this healthcare movement going (the bean counters or the visionary politicians),  plus the actual impact on individual patients who do not get better because they cannot afford their medication.

Last bit of totally good news - my peak flow hit 500 on Monday! This must be good news.

Wednesday, May 4, 2016

May 4 - Going to Toronto

Here it is - the day before we go to Toronto for the Asthma Society's conference called "Fighting for Breath." I am happy to say that my asthma symptoms are totally fine. I realize it is about 6 weeks since I took prednisone and that is how long a burst has lasted in the past - but I'm hoping I will stay fine from now on. Maybe forever. Who knows - that is the challenge of asthma - it is so unpredictable. Yes, you get hints when it is starting but you never know when that will be. I think i had another migraine a couple of days ago. The Axert seemed to work. I hope that doesn't become a regular occurrence. apparently if you have asthma you are more likely to get lots of migraines - nasty thought,

We are flying to Toronto by West Jet - flying out of Cassidy at 6 am tomorrow morning, I hate getting up early so we have been preparing by going to bed before 10 for the past few nights. I must be in bed by 9 tonight. I am pretty much packed and am only taking the bare minimum. Not even any extra drugs - It's Toronto - what could go wrong.

Not so Fort McMurray which is experiencing a terrible wildfire. Everyone - 88,000 people-  had to leave town with hardly any warning. It's only May but it's so hot and dry with strong winds that the fire is just rampaging through the town - climate change hitting hard right where the fossil fuels are being extracted. Poor people. Thank goodness Rob wasn't there.

Once we get to Toronto, I will be attending the NAPA Meeting on Friday. It will be interesting to see everyone again. We are doing something with our asthma stories to help spread the word  about asthma. I wrote my story weeks ago and think it is good. It is cheerful, to the point, and 600 words long. Hope this all works.

On Saturday Mike and I will attend the Conference. I am on a panel with another patient and 2 doctors. We have to introduce ourselves and  then a moderator will lead us through discussion about such issues as why it's difficult for people to take medication, etc. Seems a little dull.  I have rewritten my introduction about 6 times and it never seems right, I want to be serious but upbeat and touch on at least a few of the issues.

MAY THE 4TH BE WITH YOU!




Wednesday, April 13, 2016

Migraine cure - I hope

My headache would not go away. It didn't hurt a ton - but it nagged. I finally went to see my sinus doc in Vancouver to see if it was caused by my sinuses. It wasn't. Due to the prednisone, my sinuses were as perfect  as my lungs. The migraine may have been caused by the prednisone itself or just by the stress my body has gone through for past few weeks.

My sinus guy gave me a prescription for Axert. You take one pill with an Advil and see what happens. If it doesn't work, you take another. Axert raised the serotonin level in your brain and opens your blood vessels. (Of course, the pharmacist said that isn't actually the way it works - if the first pill doesn't stop the pain the second one won't either.) Anyway I took a pill in the parking lot waiting for the ferry and another one on the ferry. it didn't really go away but seemed much better when I got up this morning. But something is still up because I can still feel a bit of pain behind my right eye. Is it a nother migraine? I don't know. I didn't have an aura so I won't take an Axert.

My latest theory - it could be poor eyesight cause by a cataract that has got worse. Why? Because prednisone also causes cataracts and can make them worse. I will go to see my optometrist tomorrow to see if that is the case. In the meantime, if it gets worse I will take an Advil. Well, I will take one anyway - just to see if it makes a difference.

I got pretty "loopey-canoopey" today about my two recent paintings. I think they are done. Here they are:

They are called 'Troubling Waters" #1 and #2.

Thursday, April 7, 2016

Asthma and Migraine

The migraine aura faded away after about half an hour but then a headache slowly crept in. Behind my right eye hurt; the right side of my head hurt; when I coughed a bit, my head hurt even more. I took some advil. The headache didn't really go away. In fact I'm not sure it has completely gone yet - two days later. Since it was never excruciating, I wouldn't have thought it was a migraine if it hadn't been for the aura. It seemed to spread to my back and shoulders so maybe it turned into a regular tension headache.

I did discover that there is a connection between migraines and asthma. I had never heard that before. Not good news. I have had migraines and auras in the past - but not for at least 10 years.  Also, I never had a headache after an aura and I never had an aura before a severe vomiting migraine. Both events were pretty rare.

According to WebMD many people including children have both. "Both disorders... involve similar changes inside the body. In asthma, the airways narrow and restrict airflow, and there is inflammation of the airway linings. During migraines, there is inflammation along with narrowing and widening of blood vessels." 

The worst news - a sure sign one should not consult the Internet with medical questions - is that if you have asthma and rare migraines, you have an increased risk statistically of getting a lot of migraines - 15 a month.  Apparently the medications for each condition  can make the other condition worse so there is no easy solution.

This I do not need! Asthma is bad enough when its painless but this time, with the whatever happened to my ribcage causing really bad pain when I coughed for the first week and now maybe a related migraine, it has been quite painful. I did email my sinus doc and told him the whole story - but he doesn't usually reply to emails (except when he prescribed the prednisone from Saigon) so I'm not sure what to do as far as doctors go. Wait and see - I guess.

Tuesday, April 5, 2016

Really sick friend

I got an email today from a friend from boating who has COPD and who just had a really terrible episode. He ended up in the ICU in Duncan for 4 days. He took 2 weeks of prednisone and morphine. He is now tapering off for a month and hoping to get back to his version of normal - which not nearly as good as mine. He uses a scooter to get around and is very thin.  He said he lost the sense of various parts of his body and feels pretty wobbly.

Well I'm going to quit now because I am having a migraine aura and can't see the keyboard. Haven't had one of those in years. 

Monday, April 4, 2016

Breathing back to normal - now working on strength

Today I am OK - more than OK - I'm almost normal! I have virtually no coughing or phlegm  and my peak flow, both  this morning and this afternoon, is 370. I'm hoping for 400+ later this afternoon - but no longer obsessing about it because I did hit 400 a couple of days ago. My side hardly hurts and I actually cancelled the appointment this morning with my GP because I can no longer pinpoint the pain.

However, my proprioception is still not good enough - meaning I am somewhat unsteady and weak. But my brain seems to be back - and that's a very good feeling.

Mike told me this morning that he was really worried by my apparent disconnection from reality after I finished the prednisone. He said I seemed not to be able to make sense out of what he was saying. I could hear him but my responses were way off. He said I seemed not to have any awareness of traffic when we went out walking. I do remember - it was worst last Wednesday after I got my Xolair shot and picked up my new progressive glasses. I felt I did not know where my body was. My lower body felt disconnected and mildly numb - kind of useless like a mermaid's tail. My feet felt like flippers. I couldn't tell where my feet were or where to put them.

I experienced this last spring when I was having dizziness from inner ear infection and poor eyesight from an eye infection and having to wear those nasty progressive glasses. It's called loss of proprioception. My audiologist told me that if I worked at it, I could get it back. For me working at it is taking the risk of putting my foot down without looking where I'm putting it and, instead, paying attention to the feeling inside. I think doing that reconnects sensory nerves that have become weakened by reduced sensory input. Before I got the bacteria last month I was really good - I was doing lots of weight training and skating as long and hard as I could a couple of times a week. My balance came back, I had strong shoulders and I could almost sense where the blades of my iceskates were. I have to get back to that again - because when your body feels week and your balance is off - being able to breath is not good enough.

So this morning I did an easy version of my weight training routine - just one set of 15 repetitions using 5 lb weights. All were relatively easy except for shoulder press which is always the hardest. In a couple of days I will do my routine with 6 lb weights and try to work my way up to 10 lbs for at least some the exercises. I used to be a very fit person and even taught aerobics for a number of years when I was in my 50s so I know the theory and just have to do it. Mike and i also did a bit of Tai Chi which I think must be excellent for proprioception. I guess it's all part of managing your asthma when you are an older person.

Mike must think my brain is back because he has taken himself out in our boat to Newcastle Island with his scuba gear. He is going to test his buoyancy. He lost quite a bit of weight lately by following the FODMAP diet and needs to reorganize his equipment and weights. Once that is sorted, he is going to do a short dive in Mark Bay. He hasn't been diving for months (partly because he felt he couldn't leave me alone) and has never actually gone out completely by himself. It's a lovely day, the camelias are in bloom and it's what he wants to do - so I'm just enjoying the fact that he is doing it and absolutely not worrying.  I'm going to garden, walk the dog, and wash the kitchen floor. Yippee!




Friday, April 1, 2016

Better but not perfect

Yesterday I was a so much better day than Wednesday. I felt like my brain was working; I was hardly nauseated at all; my breathing was effortless with no coughing or sneezing (although my peak flow did not improve as much as I expected - still won't go above 330); my digestive system was operating as normal; my ribcage pain was greatly reduced; I had stopped shaking and could work on the painting that has been "tormenting" me for the past month. The other interesting thing was that part way through the prednisone burst, when I felt like a sausage, I weighed myself and I was about 4 lbs higher than normal. Then yesterday morning, I had dropped 7 lbs to a weight lower than normal. Today - back at 115 lbs - my regular weight for the last several years. I didn't think short bursts of prednisone affected weight.

I have to admit I was a bit grumpy yesterday - but a good kind of grumpiness that Elspeth says means you are getting better.

Today there is a phone meeting of the NAPA in person meeting committee. I'm sure the other members have ideas but I haven't heard anything so tried to put a few things down in writing as a start - although I am low person on the totem pole. Hope it is productive.

When I checked my my email, I  found another request from the ASC asking me to make a donation as soon as possible so that they could get matching funding from a grant they have received. Apparently they already have the grant - but can't get the funds unless they get matching donations from other donors. I understand the concept but found it is annoying and unprofessional. I already give on an automated  monthly basis though Canada Helps. Why would I want to stop that and start it again to activate the matching grant?  There must be a way they make it work behind the scenes. There was no mention in the request of "thanks for what you are already doing - could you do a bit more?" No mention of what the ASC spends it donations on. Just a cheery note to everyone asking the same thing. Having spent a fair bit of my life as director of the 9th largest public library in Canada, I know how fundraising is supposed to work. I know it costs money to set up a professional  fundraising program and I also know that unprofessional fundraising has negative outcomes. Fundraising is part and parcel of PR and should always be seen as such. It makes the ASC look mickey mouse to be sending out inappropriate messages. I feel sorry for the staff and board because they have great intentions and do good work despite obviously not having resources to compete with the big boys like the Lung Association.

On a more upbeat note and having only a little to do with asthma, I am finishing reading Hamefaub and Hamefaub's "tax is not a four letter word." (2014) It is one of the most informative books I have ever stumbled a cross. I describes how the Canadian tax system works - including the ongoing belief by all parties in recent years that  taxes are bad, the unrestrained market is the only way to guarantee a prosperous economy, and public services are just inefficient pork and gravy. Again, as a former public librarian, I know this is wrong. Throughout the 25 years I worked at VIRL, the library was constantly facing tax cuts despite population and membership growth. We did our best to change the way we did everything to give the maximum value. Everyone worked extremely hard and they also worked smart.

The way I think this book relates to NAPA is that it suggests that things may be changing. Some people are beginning to see themselves as citizens responsible for the whole country and for the future - not just taxpayers trying to hang on to their hard-earned money. There are possible new forms of taxation - including carbon tax and FTT (financial taxation tax) that could be used to change society. The carbon tax could help Canada take the necessary steps to reduce fossil fuel emissions and the tiny amounts charged on trading through the FTT could cool extreme risk-taking of the very wealthy who "game" the market.  Since Stephan Dion is one of the contributors, I think this gives insight into what the Federal Liberals are trying to do with their message of hope and sunny ways. Oh yes - I think this approach of building on hope and citizenship could be applied to the information being prepared for the fair pharmacare. Everything should not be about cutting taxes. Some things should be about making Canada a better place. BTW, would you believe that innocent little Canada actually collects almost the same taxes per capita as rapacious, tax-hating USA? All news to me.

Tomorrow - the final version - with collaged photos of water bottles interspersed with the abstract collage of this Kandinsky inspired 30x40 acrylic. Oh yeh - another crusade! Good grumpiness!




Wednesday, March 30, 2016

Not better yet

Second day after prednisone and not better yet. In fact, a bit worse than yesterday as far as energy, balance and being "with it" goes. Don't think I will even attempt a walk with the dog. I guess it is the "down"  that comes after prednisone - even though it theoretically shouldn't happen after a one week burst. 

I haven't been able to blow a good peak flow yet today - maybe later in the afternoon.  My rib cage still hurts when I cough up phlegm and there's still a fair bit.  I still need to lavage my sinuses to clear them out. In other words I still have a cold.

I got my Xolair injection this morning - seemed OK but I don't think it helped in any immediate sense.

Also picked up my glasses (progressives) which the optometrist has been trying to make work for me for about a month - 3 tries to get the lenses right. I always feel unsteady with progressives - so trying a new prescription today probably set me back a bit. I'm back wearing my contacts which give me much better vision and proprioception (balance and knowing where I begin and end.) Yes - I think the visit to the optometrist was ill-advised. Even a lie-down afterwards didn't restore me.

I'm only writing this to point out that prednisone is not a complete and immediate cure to an asthma exacerbation. However, doing a little self-analysis and reasoning is helpful.  It's sunny today.

Tuesday, March 29, 2016

Day #1 after finishing prednisone burst

Today was my first day without prednisone after taking it for 8 days - 30 mg the first day and 50 mg each day for a week. It was for a really rapid and severe asthma exacerbation which started with a dreadful cold on St. Patrick's Day. Now, 12 days after the cold started, I think think the prednisone has done the trick. My breathing feels more or less normal. Highest reading is still 320. Hoping for 420 soon.

I stopped cold turkey as I nearly always do. Short bursts of prednisone normally don't require tapering to lower doses because your adrenal glands keep working for a couple of weeks despite taking prednisone. If you take it longer than that, the glands tend to stop working normally - so you have to taper. Stopping prednisone suddenly after a long treatment can cause something called an adrenal crisis - when your body is lacking hormones and you feel truly terrible. This has never happened to me.  Prednisone clears your body within 24 hours of the last dose - so the withdrawal is related to changes in your adrenal system not the prednisone itself.

I am having minor withdrawal symptoms today - including shaking/vibrating and feeling weak in the legs. I actually felt like that the last couple of days I was taking it so am not sure how that fits in. I would like to paint but hands are not steady enough -  Instead I have been cutting a few things for my collage and working on websites. My emotions never got too out of whack with this burst - neither depressed nor euphoric and I feel pretty calm and reasonable now. I went on a good  walk with the dog this afternoon - at least a couple of km with a fair bit of elevation - something I could definitely not do during my exacerbation. I took it slow and think I feel better for it.

My right side rib cage still hurts when I have a phlegmy cough - but fortunately coughs have become pretty uncommon - just a few times a day. I made an appointment to see my GP about my ribcage but can't get an appointment until next week. Maybe it will be better by then.

Checked my records and think this is about the 12th prednisone burst I have taken in my life. I had one in 2004 when I was in Australia and a couple over the next few years. Then 4 in 2013, 2 in 2014 and 2 last year. Xolair is supposed to prevent the kind of inflammation that requires prednisone so I wonder if it's just not working or I need to take more. I get my next injection tomorrow.


Lovely Lexy - our cocker spaniel - to whom I am gratefully not allergic.

Monday, March 28, 2016

Final 50 mg today

Today is the last day for my 50 mg of prednisone burst. A weird thing happened. I put the tablet on my placemat to take with breakfast coffee - but when I went to take it, it wasn't there. I searched everywhere - even swept the kitchen floor with a handbrush - but it didn't turn up. I was worried that if the dog found it and ate it she would probably die. Not that I really think she is daft enough to eat a bad tasting pill when she loves carrots but won't eat parsnips. Anyway I have searched everywhere without success so have to conclude I took it with my first sip of coffee without noticing. This sometimes happens with symbicort e.g. when I intend to take 4 puffs, then do something else like brush my teeth, and don't remember if I've taken it or not. The way my body is shaking and the blood vessels are poking up out of my hands seems to confirm I took it.

The thing about this prednisone tablet is that it is actually # 8 because I took my first 30 mg tablet last Monday. Since a normal dose is 5-7 I was having some worries about taking it. What happens next? Anyway what's done is done. The clinic is not open today - being Easter Monday - and I don't want to go to the walk-in Clinic just for someone to give me a bear hug and say I don't have cracked ribs. I'll just stay the course.

Other things are working OK. Not much of a peak flow yet - only 220 - but I am still afraid to really blow hard in case I cough
- so hopefully better reading this afternoon. It is a lovely spring day and I am going outside.

Sunday, March 27, 2016

Pain still severe

This is just a big complaint. I am on the 6th day of a 50mg per day prednisone burst and I seem to have hit a bad spot - mainly due to the fact that I have damaged my ribcage in some way and it hurts when I expand my ribs. I just had an unexpected cough caused by water going down the wrong way when I was taking my azithromycin and the jab of shooting pain in my right side was like a dagger into my side. I know something is torn or broken and it is scary.

I shouldn't complain too much. I know I can cough in a controlled way to get rid of phlegm if I use my lung flute. I can lavage to clear my sinuses and prevent postnasal drip. I can poop without much pain now that I am taking 2 cups of metamucil per day. But unanticipated coughs - even little ones - are truly awful. I should see someone about it - but it is Easter Sunday and I am certainly not going to Emergency. I'll try to see my GP next week since my sinus doc emailed he will leave it to my asthma doc and my asthma doc has not replied. He is still on vacation and says he usually doesn't answer emails though he always reads them. I think I should make an appointment to see him too when he gets back to St Paul's.

On a happier note. My peak flow is gradually going up and not too hard to take. Hit 325 this afternoon which used to be my green zone. Now I think I really need to get to 370 to be tiptop. Maybe I am actually there but given my timidity about expanding my lungs completely I can't quite blow it out. I had a really good sleep last night (thanks to zopiclone which doesn't always work that well) and finished my book on the English in Iraq 1914-21. My grandfather was a soldier there so it was interesting - though of course he was just one of the British troops from India - but one of the lucky ones who got home again, without any injuries. Now I'm reading about taxation in Canada - a bit dry but informative. I believe in the importance of tax-supported services and wonder why we seem to forgotten the link between services and taxation. This book is giving a lot more detailed information. It even mentioned national pharmacare at one point.

One more day of prednisone - so what happens then? Probably keep on improving my breathing but maybe get a little down emotionally. After that? Hopefully no more unexpected coughs and gradual healing of whatever it is that's hurting. I actually put the pork roast in the slow cooker myself this morning so Mike got a bit of a break and we will have a nice Easter dinner.



Friday, March 25, 2016

Difficulties

My worst difficulty with this asthma exacerbation is that all my earlier coughing on has done something to my rib cage. My right lower ribs (or diaphragm or intercostal muscles) hurt excruciatingly when I cough and I still have to cough to get phlegm out. I hear it rumbling in my chest and a tickle begins. I stand up, grab onto my side and aim for my bathroom sink. After a few deep gurgly coughs, globs of phlegm shoot out. Sharp burning pain and thank god that's over.  When my bad coughing first started last week the pain was quite general - throughout my chest and back. I've felt that before. Yesterday it was in the back and today it is in the front - nasty new sensation. I tried tying a scarf  around my waste a few times to keep things from moving about when I knew I was going to cough but it made it harder to actually cough so was not a great idea. When I am not coughing and have taken an Advil it is barely noticeable - just a sort of lightly burning pressure. 

It also hurts to poop (too much information!). This was really annoying yesterday. I eat bran buds and lots of vegetables and fruits everyday and never have constipation or diarrhea. In fact I always claim to have an iron stomach - my best feature. However, I think the 3 weeks of nausea inducing Teva Trimel (which I thought I was fixing with lots of ham and cheese) plus my current combination of drugs (including azithromycin) has wreaked havoc on my good bacteria. They are not doing their usual excellent job - instead making me feel I need "to go" when they are probably just producing unnecessary amounts of gas. Hopefully I have now got a grip on this. I am back to taking a new probiotic "K" recommended by my pharmacist. I hope my weakened good bacteria are welcoming these millions of reinforcements or that at least the new guys are keeping bad ones from taking over. I also took metamucil yesterday to supplement my morning buds. I always take metamucil on vacation to ensure I get enough fibre when bran buds may not be available. It seems to have helped.

Other difficulties - well it's hard to puff out a peak flow because that hurts too. Also gets me coughing - which may be a good thing because it clears my lungs but messes up my reading. I'm sure my breathing is much better than my readings indicate but so far this morning I can't blow a good reading. I remember when I was in Australia in 2004 having a bad exacerbation, prednisone was so amazing. Within about 4 days (my PhD graduation day)  I had absolutely no coughing and got through the ceremony with no trouble. I 'm sure that will happen soon.

The other thing, of course, is all the unplanned peeing. You cough hard - you pee. You wear the right gear and know when you get better this will stop too.


In the meantime I'm reading a fairly interesting book on the first invasion of Iraq by the British during WW1, taking short walks, documenting my shakey legs, mild nausea, bitter taste, and (so-far) stable emotional state and "enjoying" this beautiful sunny Good Friday in Nanaimo. Cherry, magnolia, forsythia, skimmia and pierus - all in bloom - and daffodils at their best. Rob and Josie hopefully finalizing their new house deal and Elspeth and Glen working on their new hedges. No big trip to the East this spring but surely RVing on Vancouver Island, boating in the Gulf Islands, going to the Asthma Conference, and maybe joining a walking group. Also - I'm sure I'll feel like painting again, Not euphoric just yet - but hope to be soon.

Wednesday, March 23, 2016

Azythromycin

Day 3 of prednisone and already improving. Peak flow up to 255 this afternoon.

Also started azythromycin which helps some people with asthma -  I think by reducing inflammation more than from its antibiotic properties. I took 2 prescriptions about 2 years ago when my asthma was pretty good (in the 300s) and it didn't make any difference. But asthma doc suggested it, sinus doc prescribed it, pharmacist filled it, Blue Cross paid for it and Mike picked it up - so being a very compliant patient I took my first dose at lunch.

Speaking of which, my meds now are:
  • Symbicort - 4 puffs 4 times a day 
  • Spiriva - 2 puffs in am
  • Pulmicort - 1 nebule into sinuses at bedtime
  • Prednisone - 50 mg for 5 more days
  • Azythromycin - 500 mg for 20 more days 
  • Fluconazole - 4 tabs per day until end of June
  • Xolair - every 28 days - next one March 30

I am feeling slightly nauseated and getting edgy - not so euphoric as yesterday - but extremely optimistic that this will all get me back to where I should be.

I posted this photo on Instagram (paint4fun):


It is my chart as of today showing how my peak flow started to drop on St Patrick's Day but now is climbing back up. I even added 2 hashtags  #livingwithasthma #asthma management. I don't really know much about how hashtags work but thought if I want to effectively encourage others to deal with their asthma I should be a bit more tech savvy.

I also did a post on my Facebook account  (penny.grant.902) about what is happening - again to encourage others to take care of their asthma with a good Action Plan and self-advocacy and to promote the  Fighting for Breath Severe Asthma Conference. in Toronto in May. I discovered a Twitter hashtag #fight4breath so I will start doing Twitter!

Just to remind myself that my whole life is not about asthma - here is a picture of some of my "yellow paintings" on the wall of our dining room.





Tuesday, March 22, 2016

In the Zone Again

Today I went to Vancouver to see my sinus doc. On the way over I got an email from my asthma doc who is in Saigon. He said to increase the prednisone to 50 mg per day for a week. Since I had some 5 mg tablets with me, I took 20 mg on the ferry.

My sinus doc and his Fellow checked my sinuses and found very little phlegm or inflammation. Since my latest infection started while I was taking Teva Trimel, and there is now no sign of it, I probably don't have the bad bacteria anymore. They saw some fungus in my sinuses that is not responding to the fluconazole. They managed to get a tiny nasal sample. I will try to do a sputum tomorrow.  However, despite how much it hurts when I cough,  not much is coming up right now. They don't expect any bacteria will show up from either culture. We'll see.

My asthma doc also offered to prescribe azithromycin which has benefit to some people with asthma - but not because of its antibiotic properties. I tried it a couple of years ago and it did not make much difference. However my asthma wasn't too bad then - so I emailed back and said I  would try it. Hopefully he will still have connectivity when he gets my message.

My latest hypothesis is that what I have is a classic asthmatic reaction to a rhinovirus. In other words, I think that I did catch a regular cold after the bacteria had cleared up and then had a really bad asthma exacerbation - down by about 50% in 4 days. Rhinovirus is a fairly common cause of asthma exacerbations (50% of adults and 80% of kids with asthma exacerbations have a rhinovirus). I believe it has happened to me several times in the past - though not as rapidly. In those instances my exacerbation literally lasted for years. Hopefully not this time. The big prednisone dose and Xolair should help.

So I'm in the zone again and hoping to feel much better and super-hyper in a day or 2.

A happy note - my art teacher phoned and offered to arrange to have me take a class in April to replace the one I missed last week. Also - lovely flowers from Elspeth, such good care and chaufeurring from Mike, and other happy family news. (Oops is euphoria already setting in?)

Monday, March 21, 2016

Managing

Things have progressed since yesterday - but I think I'm doing the right things and will eventually get back to "normal."

I decided last evening that unless I made a marvelous recovery this morning I would follow my revised Action Plan today.  My old Action Plan was that if my peak flow dropped below 200 for a day and I had other out-of-breath symptoms I would go to my GP for prednisone. At that time, my highest dreamed for top peak flow was about 410 - so 200 was roughly 50%. Now my peak flow frequently gets into the 400s and my specialist gives me prednisone when I'm still in the high 200s. He also says not to let things get out of hand. So I figure my new red zone is about 280. In other words, if I don't get into the 300s I am in trouble. I think I have his agreement on this.

So - my highest pf yesterday was 240 - no matter how hard I tried to blow.  called for an appointment with my GP today but he is away on vacation for a week and no other doctor was available until tomorrow. My asthma guy at Pacific Lung in St. Paul's is on a trip to Vietnam. So Mike and I kicked my Action plan into action.

  • I got a fresh prednisone prescription last week - to take on our trip to Toronto and east. I took 6 tablets - 30 mg - at breakfast. 
  • I also took my 2nd-to-last Teva Trimel, my Symbicort. and Spiriva. 
  • Then I called Xhale to cancel my take-away Xolair and restore my appointments here in Nanaimo for April 27 and May 25. 
  • I called my sinus doc's office and got an appointment for tomorrow. I know my sinuses are still involved although my asthma is more worrying. Elspeth is worried that my so-called cold virus is actually a new bout of my mysterious and nasty bacteria so I'm dealing with that possibility. 
  • I called Pacific Lung and told my Respiratory Therapist about what I was doing. She said she thought the 3 week prescription should have dealt with the bacteria - but it was good I was going to my sinus doc and I should ask him to take a sample of my sputum as well as my nasal phlegm to see if the bacteria had infected my lungs.
  • I emailed NAPA that I would be flying to the conference in May - not RVing.
  • I called Elspeth to update her 
  • Mike emailed Rob and Josie that we wouldn't be going to Vancouver for Spring Break. 
  •  Mike drove me to Pharmasave and I signed a form that said I was going on extended trip and so needed all the medications (12 Symbicorts, etc) he had picked up for me 2 days before. Of course I told the pharmacist the trip was cancelled but he can't re-issue the drugs - so I can just use them anyway. (The main reason that the trip won't be resurrected is that my Medoc travel insurance will not cover me for asthma if I have taken prednisone 90 days before. )
 So here I am - not feeling too good or too bad and hoping for the best.


Sunday, March 20, 2016

Bad cold

On my last post, I was 8 days through the Teva Trimel and thinking I had overcome the nausea. Unfortunately this turned out not to be true. I did have a few days where eating meat and cheese seemed to help but most days were not that good and I felt plain sick. Like today. I kept on believing that nausea was just an unavoidable side effect and I needed the drug. I tried to convince myself that I wasn't actually being poisoned - though I felt I was.

Then - kaboom - I suddenly got a really awful cold last week. My sinuses had been very congested and gluey to I decided to do a lavage. Seemed OK - dripped for a bit. But then it turned into a truly nasty first phase cold - constant nasal discharge almost faster than I could keep a dry kleenex in my pocket. I worked in the garden anyway - because the weather had turned sunny and we are still planning to take this big RV trip to the Eastern US.. Weeds - especially the bitter cress - were flowering everywhere. Once they go to seed, they spray their tiny seeds everywhere - so I wanted to get them out while they were still in flower. Weeds are a lot bacteria and viruses if you think about it. One tiny plant can produce  enough seeds to totally cover the garden in a couple of years.

A couple of days have gone by and my nose is no longer running.  But my cold seems to have progressed  to my chest. I have phlegm in my lungs which is hard to cough out. My back and chest hurt when I cough and there is a raspy sound. My peak flow is low. Yesterday the highest I could get it was 310. Usually I get above 400. Today it might be worse - only 200 so far - but maybe higher this afternoon. Also nausea and tiredness and a bitter taste in my mouth and dry lips - but mainly worry about what to do next. I do have prednisone but what if this phase of the cold passes like it would with a normal person and I'm fine in a couple of days?

Dr. Dorscheid is away on vacation and it is Sunday so I can't see Dr. Bland. I could go to the Sunday clinic and see a doctor who doesn't know any more about this problem than I do. Dr. Javer said to contact him on Monday and he would see me a False Creek on Tuesday - but my sinuses are not bad. It really is the pain I feel in my back and chest when I cough. Does that mean I have pneumonia? I don't have temperature. And darn it I was planning to go to Vancouver next week for spring break with Henry and Charlie and now I probably can't. Also it was my birthday yesterday.

Wednesday, March 9, 2016

Eat meat for nausea?

This is day 8 out of 21 of my Teva Trimel prescription and I think I have mostly gotten over the nausea.
When I wrote my sinus doc about my nausea, he said I was doing everything right and to stay the course. My new cure - eat meat at every meal - chicken, ham, smoked oysters.... also cheese is good.. I got this idea because, even when I was persistently nauseated, I felt at my best after dinner. My new theory: Meat protein stays in your stomach longer than bread or crackers or yogurt. Thus it dilutes the medication. As we all know "the solution to pollution is dilution!"  I also also think the medicine is now working - so I am feeling generally better,  more energetic, less headachey. Phew!

However, we are not going to Montreal because Elspeth is also sick and on another antibiotic - cefurxine for a month. So we have cancelled.

Instead Mike is planning a big RV trip across North America starting in April. The idea is to get to Toronto for the May 6-7 Asthma Conference, continue our travels in May, and be home in June for next asthma appointment. If I am doing OK, I will be able to reduce my other medications a bit.

A couple of years ago we RV'ed all the way across Canada  to St John's Newfoundland (and back). It was a good trip - 16,000 km in about 2 months - but it was fairly exhausting and my asthma was a bit worse when we got back.  This trip would be in the US on one or two of the 2 lane highways that cross the continent. Best known is Route 66 but there are others. There is lots on the internet about people RVing around the US fulltime - so why not us for a couple of months? Coincidentally the KOA catalogue arrived today with info on Kampgrounds all over the US. My travel insurance is no longer restricted since I have not taken prednisone recently.


I guess I should email both the docs to ask what they think.

Saturday, March 5, 2016

Antibiotic Nausea

Darn it - I'm feeling nauseated. I have been feeling nauseated on and off ever since I started taking my antibiotic - Teva Trimel.  I felt fine when I woke up this morning but now it is noon and I feel crappy.  I do not have diarrhea which is a good thing. Also my breathing is good but my sinuses are still congested - so I don't know if it is working yet.

I think my nausea is either my body and bacteria reacting to the Teval Trimel or possibly reacting to the combination of Tiva Trimel and Fluconazole. According to an authoritative looking website, they are not normally prescribed together - but there are tons of things that are not normally prescribed with Teva Trimel. I have taken a similar drug in past - called Novo Trimel - and I think it bothered me then - but not this much.

I am drinking lots of water and eating even when I am not hungry to try to quell my symptoms. I am also taking TruZen which is an expensive probiotic used for IBS. Tomorrow I am going to stop taking my Fluconazole in the morning at the same time as the Teva Trimel. I'll take it at lunch. Also I won't take my TruZen with my antibiotic - because Elspeth says the antibiotic will just wipe the good guys out.

This is only day 5 of 21. I will tough it out for a few more days before I email my sinus doc.He did say that sulpha drugs cause nausea when I first complained. Either the drug or the bacteria or both are making me stressed out and stupid. Piffle!

Thursday, March 3, 2016

Darn it - have a weird bacteria!

A couple of days ago, the sinus docs emailed me the results of my sinus culture from last week. I have a relatively rare bacteria with an extremely long name that I can't pronounce let alone remember.  So now I am on a potent sulpha drug that should clear it up. My muscles have been feeling sore and flu-ish (I guess from the bacteria) and the drug makes me feel nauseated and I burp for a couple of hours after I take it - but I am confident it will make me get better.

On Tuesday (after picking up the sulpha prescription) Mike and I took the ferry to Vancouver and went to St Paul's to see my asthma doc for my regular appt. My pulmonary function test was at 86% - up to 95% after ventolin - so this is very good news. I am improving. He said that once I get over the bacteria and the candida, we can start cutting back on my other medications. Maybe in June. He also commented that it was no wonder I need a sleep aid - given all the symbicort I take. I know it makes me hyper but usually in a good way. It would be nice to take a little less..

Yesterday, after I got my Xolair injection, we went back to Vancouver to accompany Elspeth to her sinus appointment. Her left maxillary sinus had improved but was not perfect. She was suctioned, washed out and had special gel medicine shot up into her sinuses. The doc told her that she was the kind of patient who needed to get regular attention so things don't go sideways again. The plan is that she will go in to St Paul's every two weeks to have her sinuses washed out. Because her celia don't work - her body simply cannot do it without help.  This seems pretty onerous - but she has been going in about twice a month for various infections anyway - so this will be preventative. I think it's good news. Our doc also mentioned another patient who had been going in every two weeks for the same reason for 16 years. This is a longterm project.

At the same appointment the docs looked into my sinuses and decided to give me another week of the sulpha drug - a total of 3 weeks - because it is a nasty bug. I'm sort of glad I don't know the name of the bacteria because I can't look it up and really freak myself out. Weird. I don't know why I got it.

This was a pretty medical post. Other news - I'm going to be on a panel at the Asthma Society's Conference in May in Toronto - talking about my experiences with asthma. Should be interesting.

I need a picture to lighten this up. Here I am in my parents' garden swing with Elspeth (when she was about four) and little Robbie (now Rob)  was about one.








Saturday, February 27, 2016

Of sinuses and asthma

Asthma is often associated with chronic sinusitis. WebMD says about half the people with asthma have sinus infections or chronic sinusitis. I am one of them. 

Elspeth does not have asthma but her sinuses are more of a problem than mine. Fortunately the big infection she had last week had improved significantly by Wednesday. Only one maxillary sinus was infected and hopefully the broad spectrum antibiotic she has been taking for a few days will soon fix that. So far, after 3 cultures, nothing has grown so no-one knows what is actually going on. However, the basic hypothesis is  that the cilia (tiny one-celled "hairs") on the surface of  this sinus have been damaged by previous infections. The damaged cilia  cannot move stuff (like viruses) out of the sinus as they should. Instead the viruses set up an environment where bacteria can grow. Then the bacteria spread to other sinus cavities. If the infection gets up above the frontal sinus it can actually be life-threatening. So she has to be super proactive about going to our sinus doc to get goop suctioned out when this first starts.  

Mike and I went with her to her appointment on Wednesday. I was also having a bit of sinus congestion - so - when the doc asked how I was - I told him. He squeezed me in, suctioned out the goop, and we took my sample to the lab. He and his fellow docs said they thought they saw fungus - which is surprising given all the fluconazole I am taking. I have an appointment with my asthma doc on Tuesday. The sinus guys will send him their results. I wonder what he will think. I am feeling pretty well but am coughing out a few mucous plugs (twirly phlegms) these days - so something is definitely not right. The lungs also have cilia... hmmm.

I probably should not have postponed my xolair injection until next week - but felt it was more important to to take Elspeth to her sinus appointment on Wednesday than for me to stay home for my shot.  If being a week late makes a difference, I guess we will know that the xolair is working. Breath on. 

Stopping now. Mike has brought me a nice cup of tea!


Friday, February 19, 2016

Family Sinuses

On Wednesday we met Elspeth and Brendan in Park Royal to go to see the sinus doc at St. Paul's. Poor Elspeth had suddenly developed problems with her sinuses the week before. This was only 3  weeks after being found to be 100% OK.  Her left maxillary (cheek) sinus had inflammation and pus, etc. - but a culture had not turned up anything. By this Wednesday the infection had spread to the other side and frontal (forehead) sinuses. More cultures were taken but as of today - Friday - nothing has turned up. They washed out her sinuses and put in medication. I have had my sinuses washed out and it's like having a fire hose put up your nose.

The doc doesn't want to give her a prescription until he has evidence about what is causing the problem. I looked up fungal sinus infections on the internet (to find out how to spell maxillary) and, of course, freaked out with what I found.  It is very worrying and she is now off work for a few weeks. I am letting out my worries by writing this.

I phone her a couple of times each day to try to cheer her up. Next week Mike and I are going to go over to the Sunshine Coast on Tuesday with our trailer and take her to her Wednesday appointment at St. Paul's and then home again. That is - as long as she doesn't have a emergency this weekend. She looks very drawn and is very tired but is willing to chat on the phone and seems clear-headed - so hopefully it not really bad.

Deciding to take her to her appointment next week threw off my Xolair schedule. The only option was to delay it by a week. Now that I am thinking of it I think I should email Dr. Doscheid to make sure this is OK - or to see if I can get an injection at St. Paul's on Wednesday when I'm there with Elspeth.. Surely they have a Xolair clinic there - though the scheduler who changed my appointment couldn't find it online.

The good news is that Brendan's sinus problem is clearly a broken nose which probably happened when he was a baby and it can be fixed with surgery - which he will likely have in the summer. The other bad news is that Elspeth probably won't be well enough to go to Montreal at Spring Break - so that plan may have to be cancelled. But mainly - I just hope she soon gets back to normal.

Monday, February 15, 2016

Nanaimo Better Breathers

Today I went to my first Nanaimo Better Breathers meeting. Mike had heard of them through a "what's happening in Nanaimo" website and we both went.

The Better Breathers hold meetings once a month at Beban Rec Centre. There were about 25 people there. Most seemed to be suffering from COPD - but the group is open to anyone with breathing issues. Some had portable oxygen, there was a bit of coughing (including me),  but most seemed pretty OK. Several people were new. The woman sitting next to me had just been diagnosed with COPD and given a puffer by her GP - but she had no idea what it all meant. A man we met said basically the same thing - he had just been diagnosed with COPD but didn't know what to do and was very averse to taking any medication.

The meeting started with a moment of silence for a member who had recently died. Then we did a seated exercise program from a DVD. It was amazingly effective.

The speaker was Heather from the People in Pain Network.  www.pipain.com  She was amazing. As a result of various spinal problems and surgery 26 years ago, she now has "persistent pain" from her waist down 24/7. She takes opiates to manage (but not eliminate) the pain. She had worked out her own plan for dealing with  pain and had started up a network of peer led pain groups across BC. There is a chapter in Nanaimo. By the end of her presentation, you could see that she was sweating from the effort. Her main point seemed to be that people in pain need to adjust their lives to deal with the reality of their pain - prioritize, take breaks, accept that there will have be bad days, give yourself comfort, involve your family, join a support group, and try to laugh a lot. At the next Nanaimo meeting they will be talking about the medical use of marijuana. This was serious stuff.

I'm very lucky. I don't have pain - just phlegm. However, her advice was good for anyone living with a chronic condition - you have to adapt. A sort of funny thing happened after the presentation. Bernie, the leader, demonstrated how to use a spacer and showed us a Symbicort turbohaler. One of the women in the group asked him whether you were allowed to take more than 2 puffs twice daily. There were a few comments and I put in my 2 bits about my 16 inhalations a day. They were amazed. After the meeting I got talking to a group about Symbicort and took the chance to do my asthma advocate thing - I encouraged them to self-advocate for the best care they could get. They left saying, "We'll fight!" Quite overwhelming actually.