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.