Sunday, February 12, 2017

What about costs?

My asthma is fine. But I have a tooth problem and a sore back. I think my back problem is caused by a structural flaw in my left elbow. When I do a bicep curl, it feels as if a ligament is sliding around. It doesn't really hurt, but I think it sometimes (like right now) makes the nerves in my shoulder and under my shoulder blade hurt a lot. I am hoping to correct this by doing more strength training. On Tuesday I'm going to the kinesiologist for a weight training lesson. If it still hurts (which it will), I might make an appointment with the physiotherapist. I am having my bone density test in a week or so - maybe I'll wait til then.
My tooth gets looked at on Tuesday too. I either need a root canal or it is broken and has to come out. In either case it is unusually problematic because it is one of the supports for my one tooth bridge. If it has to come out I will get an implant to replace it. I'll also get another implant to replace the bridge. This actually sounds good. Does any of this have anything to do with asthma - probably not but maybe my bones and teeth were weakened by prednisone. I will know that better after my bone density test.

On a slightly cheerier note - I have joined the new ACMA Advocacy Committee and am going to Ottawa in May for "Hill Day." Mike is invited too-  to share the caregiver perspective. Our committee will go to Parliament Hill to advocate on behalf of the Asthma Society re. comprehensive access to pharmaceuticals and clean air and clean energy. These are both important causes for everyone - including me.

Right now my very expensive medications are covered by Blue Cross - but I have a lifetime limit of $150,000. My Xolair alone costs over $9000 per year, Symbicort is $100 per puffer. Sporanox is also several thousand dollars per year. I think the total is around $12000 to $15000 depending on dosage. On top of that there are dental costs - which could be quite high if I have to get implants. I think all this could be classified as "catastrophic costs." My income is pretty good - so when  Blue Cross runs out I won't be eligible for provincial coverage.  It's not really catastrophic for me but it's kind of annoying to think that when I am properly cured of asthma and sinus issues and can  go on a trips again, I may have to spend my trip money on medications and teeth.

Monday, January 23, 2017

Feeling fine

My asthma is still really good. Lungs and sinuses both 100%
I am so lucky. My grandson- not so much. He needs sinus surgery scheduled for about a month. We'll stay with him for a week while his parents are at work. I still remember how vulnerable you feel before the packing comes out. Our dog is very sick too. Her heart valves are "blown" and her liver is enlarged . We'll start her on diuretics tonight and ee have ordered special cardiac food. She's a brave little thing so maybe she'll get better.

Wednesday, January 11, 2017

Cutting back prescriptions

I went to see my asthma doctor on January 3. I had a CT scan beforehand and  I had had a pulmonary function test and a sputum induction a couple of weeks before. Only the results of my pulmonary function test were available - I was 100%. My asthma doc said I could cut my symbicort to 2 puffs 3 times a day. The is a huge cutback ( I used to use 4 puffs 4 times a day) and it seems not to be causing any problems.

Well - one problem - In my travel insurance company's view, my asthma in no longer stable. A person is only considered stable if their doc has not made any changes to their medications or dosages for 90 days. I can sort of understand this - since the cut-backs could result in a person getting symptoms again - but I was surprised. I thought I just had to be free from prednisone for 90 days. Thankfully, the 90 days do not apply to warfarin - since it has to be adjusted regularly based on blood tests. Mike and I had been talking about going on a trip this winter - but with the change in symbicort we won't be able to go until April.

I had my weekly blood test this morning but don't know the results yet. The good news - I'm went skating afterwards and I feel so great to be back on the ice. I know I'll never be a great skater but I do love gliding around for 1 1/2 hours. Mike and I are also doing our strength training exercises as (designed by our kinesiologist) a couple of times per week. I almost believe I'm totally better!

For the record I now take:
  • symbicort - 2 puffs 3 x per day
  • spiriva - 2 inhalations daily
  • sporanox - 1 capsule every other day
  • pulmicort - 1 nebule (nasal) 5 days per week
  • warfarin - 8 mg daily (or based on blood test) 
  • zopiclone - 1 1/4 tablet daily (cutting back  slowly)
  • xolair - monthly

Sunday, January 1, 2017

New Years 2017

It is New Year's Day and we are on the Ferry heading for Elspeth's.  I finally got my INR worries under control. Anything between 2 and 3 is fine. I now take 8 mg of warfarin daily and go for a blood test once a week. My aim - INR blood test once a month on the same day I get my liver enzyme blood test done and go for my xolair injection. That will give me 4 weeks of freedom! Maybe even a trip!

Back to asthma. I had a sputum induction in December 15 - didn't get much - but a bit more the next day. I took it to the lab here in Nanaimo.  On Tuesday I am going to see my asthma doc to see if the sputum grew anything new. I am also getting a CT scan of my lungs. I think I am fine - but my peak flows are lower than they were in the summer (400 instead of 450) so maybe there is something else. Cutting back on my symbicort, pulmicort and sporanox did not have any impact on my asthma - My peakflow just stays at around 400. My sinuses are fine.

The ASC volunteer group I belong to (ACMA Executive) has been eliminated in favour of  committees. I was fairly annnoyed that this happened because I was the chair of the group working on realignment and rebranding and that is not what we recommended. However, since I really want to support people with asthma, I joined two of the new committees and hope I can share all the great stuff I have learned. I know I am very lucky to have such good docs and medication that works for me.

Monday, November 28, 2016

Skating Again

We went skating again today. My skates are a bit tight so got advice to take them to a skate shop here in Nanaimo and get them stretched. I think it worked! It would be so great to skate without having sore toes.

Other good things - 
  • we gave our GP's office a cell phone number and they called with my INR results and dose with no problem.  I hadn't even checked the lab results myself. So - my INR is at 2.7 (down from 3.0 last week) and I need to get to 2.3 - 2.4 by next week so I can have my tooth extracted. If I'm not close enough, I just don't take any warfarin for a day. I will be glad to get the extraction over with. 
  • the technician at the lab said some people do only get their INR tested once a month.  That is my aim. I'd do it the same day as Xolair and my blood test for sporanox (anti-fungal). Then I could actually go away for a couple of weeks. 
  • Before that I have to cut back my sporanox and stabilize my INR. 
  • I have no asthma symptoms! Now I just have to deal with the after effects of all the good drugs I am taking. 
Tomorrow the Asthma Society is putting on a webinar on severe asthma and biologic asthma treatments - that means xolair and other biological drugs that I haven't heard of. It should be interesting. I might ask about the issue of the relationship between xolair and DVTs and other blood clots (i.e. heart attacks and strokes).  Otherwise I'll wait to talk to my asthma doc.

Wednesday, November 23, 2016


Yippee! I went ice skating today! I haven't been since early March - just before my horrible asthma exacerbation/flu  which took me out of skating for the rest of the spring. Then my "fat feet" which meant my skates were way too tight and painful to try skating this fall. But today I finally got up my courage and went. I knew it would be tough until I got my skating legs back - so I started slowly with swizzles - both blades on the ice - gliding in curves from side to side. Eventually I got enough confidence to lift one foot off the ice - nearly fell. Then the other. Gradually I found I was doing basic skating around and around the arena. We skated for close to an hour and decided that was enough. Skating uses different muscles than walking and there is a lot of knee action - so need to build up the muscles and strengthen the knees bit by bit. That means more skating soon - probably not tomorrow as that is singing day.

Monday, November 21, 2016

INR may be stabilizing

I have been taking 8 mg of warfarin every day for the past 10 days and my INR finally seems to have stabilized in the high 2s. This seems like really good news. Nobody has phoned to tell me how much  warfarin to take for the next few days. I am OK with that because it is obviously 8 mg. Hopefully, if I keep my vitamin k intake consistent, it will continue to be that amount. Then I can cut back on my sporanox and and also get my INR down a bit so I'm ready for my tooth extraction.

I will be very glad not to have to keep going to the lab twice a week for a blood test. It is not always painless. I have never fainted like a guy in the next cubical did a couple of weeks ago. It took a couple of techs to calm him and get him back in the chair - though when he came to he seemed not to have noticed. But last Thurs, the tech hit a nerve and sent a tingle into my hand - only lasted seconds but was weird. Today, the tech could not get the needle in correctly. It hurt quite a bit as she dug around and she finally gave up. Another tech came in and found another vein that worked fine. The usual annoyance is the long wait - often an hour. People line up outside the door long before the lab opens at 7 am and the wait period lasts all morning. Most of the patients are fasting - so want to get in quickly so they can so they can go home for breakfast. I read my email and check Huff Post - so its not so bad - but still a big waste of time.

Asthma and sinuses are good despite having reduced symbicort from 16 to 9 puffs per day and pulmicort  to 5 days out of 7. My peakflows are normal and I have hardly any phlegm - none really. I would have gone skating today if the first tech hadn't messed up. It kind of shook me up. I know skating will be hard the first few times - so I need to start out feeling in control.