Tuesday, May 16, 2017

I am better

Just an update on general health and medicines.

My asthma is really good. I  take 6 symbicort inhalations per day and monthly xolaire injections to keep it that way. I also take daily (or alternate days) sporanox which deals with allergies to molds in my lungs, sinuses and eustachian tubes. I take pulmicort for my sinuses 5 nights a week. I take warfarin everyday to prevent future blood clots. This will likely be forever - but am seeing a hematologist in a month to see what she thinks. I now also take prolia for bone density - an injection twice a year. So far I have only had one injection - it was a non-event. Remaining - Teeth. I need an cleanup, extraction and two implants. Also - Eyesight - I have cataracts. They are not bad enough for surgery -but I think they're a real handicap. Everything is pretty fuzzy. However I am working on strength training and am much stronger - especially in my core.

Why am I doing this? I'm now so healthy I need a new purpose and a new challenge!

Lobbying for Asthma Canada

At the beginning of May, I was one of 14 people (called the Asthma Canada - Government Relations Committee) who went  to Ottawa to lobby MPs on behalf of people in Canada living with asthma.   Asthma Canada had not done any lobbying for about 7 years - so this was quite a significant event for the society.

Our two "asks" were "clean energy-clean air" and "medicines for all." These are big topics with many complicated sub-issues. I will blog about them in the future as I learn more

The Government Relations Team members are:
  • Tracey and her family from Barrie. Their 9 year old son has severe asthma and has been hospitalized frequently. He is allergic to many, many chemicals. When he is OK he seems like a normal active kid. His mother is a strong and vocal advocate. She is also very stressed. His sister has had to take responsibility for him at school - a lot to ask of a young girl. 
  • Bill - who has severe asthma himself. He is a strong asthma advocate and knows most of the key people involved in the" medicines for all" movement. With him - his cute 11 year old daughter who  also has asthma.
  • Kerri -who has moderate asthma plus other health issues. She is a university graduate about to loose her parents' coverage for pharmaceuticals because she is turning 26. Very smart person - a real dynamo!
  • Vibhas - whose entire family has asthma. He works in Marketing and seems quite dedicated to the cause. 
  • Mike and me - representing a senior with well-managed severe asthma and a kind a faithful caregiver.
  • Staff members - Vanessa, Jenna, Crystal and Justin - who organized everything.
We flew to Ottawa on Sunday April 30 and stayed 2 nights in a downtown hotel. Our costs were covered by Asthma Canada. We had dinner with Kerri on Sunday evening, attended an orientation session on Monday afternoon, and a dinner that evening. The next day we had breakfast together and then set off to to make visits to MPs to talk about our asks. We were each booked to see 3 MPs but some meetings scheduled for late morning were cancelled because there was a vote in the House. We met Kim Rudd who is strong on environment and Sheila Malcolmson who is our MP (below).

 
After lunch most of us attended Question Period where MP Rob Oliphant announced it was National Asthma Day. He gave some of the stats - mainly that there are 3 million people in Canada who have asthma. Our last MP visit was cancelled because there was a big gas leak in downtown Ottawa - the streets were closed and buildings evacuated. We managed to find a taxi outside the Elgin Hotel and headed for the airport. The person next to me on the plane had a terrible cold.  I was mildly concerned I would catch it and  would end up with a major asthma exacerbation. thankfully I seem to have escaped. It rained a lot while we were in Ottawa and was pretty cold. I was happy to have taken my winter coat and sort-of
waterproof boots.

Was it worthwhile? I would say "that is yet to be seen." It was interesting and there was a feeling of momentum developing but I doubt anything actually changed. However, both the MPs we saw said it was important for people to take their asks directly to MPs -  so this needs to become a regular activity for Asthma Canada. Would I do it again? Yes - but I want to be much more knowledgable next time. 
 

Wednesday, March 22, 2017

Cost of meds

I decided it was time to figure out what the cost of my asthma medication has been. I am lucky enough to be ensured by Blue Cross College Pension Plan so about 70% of my costs have been covered.

My total claims for the past 2 years were $45,826. About $40,000 of that was for asthma medication. (The rest was for dental.) This works out to $20,000 per year for asthma medication. Phew! Xolair accounts for about $9000. The other $11,000 is for symbicort, spirival. sporanox,and pulmicort, antibiotics, and prednisone for asthma plus a small amount for zopiclone and warfarin. This about $20,000 worth of drugs per year for asthma.  I think this is really a lot.

I am worried that I may soon reach my lifetime insurance maximum. I am currently trying to find out what my maximum is and how much I have left. From 2005 documentation, I think my lifetime limit is $250,000. I didn't spend nearly as much as I do now before my exacerbation began 4 years ago.  Also the costs basically doubled about 2 1/2 years ago when I started xolair.  Now that I'm cutting back on symbicort, pulmicort, sporanox and zopiclone, my costs should drop by about $4000 to about $16,000 annually. However, I noticed the costs of the meds I take are creeping up - Xolair has gone up $12.00 per injection or $150 per year since I started.   Assuming I have already used about $100,000 worth of coverage, I would have less than 10 more years of coverage left.

I am also trying to find out what relief I will get when my Blue Cross (Green Shield) coverage ends and I become totally reliant on provincial fair pharmacare. Will I actually get any? Green Shield will be our provider starting next month so I have sent them a query.

So, Mike and I are going to Ottawa in May as part of an Asthma Society delegation to advocate for clean air and universal pharmacare coverage.  My story is not too terrible - but it is bad enough. However a UBC study showed that one out of ten people do not take their prescriptions because they cannot afford them. Clearly something needs to be done.

Wednesday, March 8, 2017

PPP

Today I had my training session for a patient advisory group (PPP) to a pharmaceutical company.  People who are part of this PPP participate by giving the patient view of such things as drug protocols,  targeting, information handouts, etc. It is pretty confidential so I can't write much about it. An example might be that a protocol could have been written saying a patient needs to take calcium and vitamin D when they start megadoses of corticosteroids. Maybe I was told to do this and don't remember. Maybe calcium and vitamin D don't actually help = but you get the idea. On the other hand - maybe the protocol should have said that the patient needs a bone density scan when they show symptoms of having taken too much corticosteroids. Again - there are negatives to having a lot of scans so who knows. Hopefully I will be helpful to future studies because I have had some experiences -  both good and not so good.

Tuesday, March 7, 2017

Implants - maybe

I was feeling pretty stressed about my failed root canal and my newly discovered osteoporosis. I couldn't see how I could get implants if my bones are weak. This idea was stated graphically (though intended humorously) by my GP when he said the part of my jaw would come out if I had to have an extraction. Eeek - he is annoying that way.

So I went to see my dentist today to see what he thought I should do next. I told him I really dreaded having dentures and he said, "Dentures are not in your future!" Well, I was pretty happy to hear that - though I do not completely believe it.

His plan is that I should go and see an uber-specialist  periodontist in Courtenay who uses very advanced techniques for doing implants and who will probably be able to figure out how I can get 2 implants (to replace my bridge gap and the bridge tooth that did not have a successful root canal.) Apparently periodontists are now the most successful implant dentists - they use methods that work at the cellular level. A very interesting point is that success will depend on the state of my sinuses.   I think my sinuses are fine and will find out for sure on April 19.

He may also be able to give me the best advice for osteoporosis medication since bones are his area. So (donc) I won't go to my GP for this advice after all.  

So (donc again) - hope springs eternal once again.

So how is this part of my asthma diary? It's possible that my osteoporosis is the result of too many corticosteroids. It is generally believed that  prednisone in pill form causes osteoporosis if you take a lot for 3 months in a year. I did not do that. Inhaled corticosteroids should not cause osteoporosis. However, because I was taking so much symbicort and pulmicort that my face was becoming round and I had little blue bruises (symptoms of too much prednisone) it seems likely to me that the inhaled stuff may have been the cause of my osteoporosis. That plus a genetic predisposition and too little calcium and vitamin D I suppose.

Monday, March 6, 2017

Skating

Despite my osteoporosis I went skating today and was happy to be there. I am not a very good skater anymore but I can zip around the rink and I really love it. I think I will have to be a bit more careful about not falling - not something I wanted to do anyway. But I know exercise is really important for good health and I will keep doing it.

Oh no! Osteoporosis!

I have always known that prednisone and corticosteroids can affect your bones - in other words cause osteoporosis. People who have osteoporosis are more likely to have fractures for minor reasons - maybe no reason at all. In fact many people only learn they have osteoporosis when they fall and break their hip or their arm.

Of course it concerned me and I spent a lot of time trying to figure out whether or not to take calcium and vitamin D to support my bones. Sometimes I took them and sometimes I did not - depending on the latest research I had heard about. Too much calcium can hurt your heart and, because vitamin D is fat soluable, it is possible to have too much D in your body. Drinking 2 cups of milk, eating a cup of yogurt and kale or other greens should provide sufficient calcium. Going out everyday and getting some sunshine on your face for 15 minutes should provide enough D. For the last while I took neither and thought I was being smart.

A couple of weeks ago I had a bone scan to check my bone density. It was requested by one of my sinus doc's fellowes - the same one who requested the ultrasound that found my DVT. I thought it was just routine. I was feeling pretty fit from all my weight training  and the technologist was impressed that I was almost 75 years old and looking good. On top of that, I seemed to have grown half an inch - probably because of improved posture and a longer spine due to my exercise. On Friday, I went to see my GP. I was pretty shocked to hear that my bone density has decreased sufficiently to be called osteoporosis.  What me? osteoporosis! oh no! I have taken a huge amount of corticosteroids over the past few years to give me good breathing and sinuses - I'm pretty sure that is the cause of my deteriorating bones.

My doctor said take calcium and D so I immediately went to my favourite pharmacy and bought some. I am taking 500 mg of calcium carbonate and 2 vitamin D pills daily. I clearly need them but will they help? I thought I already was getting enough. I thought my bones would be strong given all the weight training and walking I do. Maybe I needed more because of the corticosteroids.  Next thing I have to do is decide which kind of bone density medication to take. There are basically 4 kinds and you can take them in different dosages - pills (weekly, monthly) and infusions (quarterly, annually). Both methods can make you feel a bit miserable - nausea with the pills and flu-like symptoms with the infusions. One type is for people who have bone loss from corticosteroids - I think that is what I need. I can't see my sinus doc until the middle of April or my asthma doc until May, so will go with whatever my GP and I work out together.

The somewhat complicating factor is that the same day I saw my GP, I also went to the root canal dentist. He worked away on my root canal but at the end he said he was doubtful about the results.  There was decay in the root that would be hard to remove - and not much would be left. In other words, I will likely have to have that tooth removed too. Since it is the end of a bridge, I will have 3 teeth missing in a row. Implants are possible - but maybe not as possible as I had thought given that my bones are not OK. One thing I always dreaded was having a denture. My mom had a denture and I thought it was the most miserable looking thing.

I am trying to view these set-backs as a learning experience that I can share with others. I will try to pass this info on to the Asthma Society and the drug company I am joining as a person with a patient perspective. Mike says that people should be given special advice about what to do to prevent osteoporosis when taking prednisone and other corticosteroids. I will try to find out if that is possible or if you get osteoporosis regardless.