Coming full circle

Things have really come full circle. Last week, my journey at my speciality respiratory centre ended. My respirologist is  significantly cutting back on his clinical practice ( and a different career path ( I heard that last bit as gossip), and  because I need more frequent access to care, I  am  being referred back to my referring doc for follow up care.  The fact that there isn’t much more he can do for me, I am sure weighed into the equation. There are very limited options for controlling my eosinophilia , other  than high dose prednisone. Until other biologics come to the  market ( soon for the IL-5 ) and possibly a clinical trial for me in the fall ( fingers crossed, nothing is ever certain.) It is all about staying afloat.

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I was surprised not be number 376. I have been number 376 at least three times in the last five years.

I have not seen my referring respirologist in almost five years. I am not sure what to expect or if it will even be positive. Considering, I was referred to a speciality centre for options, being referred back for maintenance/follow up or until other options become available seems like a step back…  It has been an interesting adventure. I have had a  somewhat tumultuous relationship with my doc. It has always been respectful, however, I think we could push each others buttons. In hindsight, you become so invested in fighting for what you want, retreating on your position is so scary, you just  keep pushing to find any answer or option. Even, when they are completely nuts. I have  been through many meds, clinical trials,  a ridiculously high volume of prednisone. I feel like I am starting all over again. It actually isn’t starting over but, a  new beginning on a different journey. I am sad to leave my  fancy sputum labs and  connection to research. It could be temporary, but it still feels like a loss.

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Waiting room “C” where it all began and surprisingly ended. I have not been in this waiting room for years till last week.

There have been many  good things to have come out of this last chapter.  I now consider myself an e-patient and health advocate, I have a met an amazing group of docs, respiratory  therapists,  nurses and researchers. I have learned something from each and every one other.   I will miss them and my clinic/research appointment post visit adventures. This usually was a  trip to a favourite local shop, a latte and gluten free oatmeal cookie.

Hopefully the next chapter will be even better.

IT IS ALL ABOUT THE LAYERS.

I had the pleasure of attending the *GSK Asthma Summit in Denver, CO  last month. What a great  way to to celebrate Asthma awareness  month. The summit  featured a fantastic  presentation on the the impact of asthma on school aged children. It was also hosted  during the ATS Conference.  My  fellow asthma advocate ( and partner in good things) Kerri and I had the opportunity to  quickly run through  the ATS conference in between meet ups with some awesome docs. I tried to enter the main conference area however, my lack of accreditation prevented this. I was able to  get some  “light” reading. I score the pot of gold of medical journals. It was like candy land.

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The ATS swag bag that Karen from GSK was kind enough to give Kerri and I . We split the swag.

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The coveted journals. So far, I have read half of them…with a respirology textbook for support.

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The view from my hotel window. The irony was that the hotel was going through a major renovation and was covered in layers of dust and other allergies. It was ironic that some some significantly severe asthmatics and advocates would be spending the night here.

 “Building Bridges for Asthma Care” is a school-based program designed to empower nurses in participating elementary schools to ensure that asthmatic children are identified and provided care according to the National Institute of Health’s clinical treatment guidelines. The objectives of the program are addressing the risk of health disparities and asthma-related absenteeism, as well as its related impact on academic achievement for inner city students.” ( **GSK Press release, May 18, 2015)

More about the Building Bridges for Asthma Care  can be found here.

Here are some of my highlights.

The summit highlighted the wonderful impact of a  great group of  people ,coming together, to make a difference in the lives of elementary students with  asthma.  One of the main themes of the presentation  was “LAYERS” this could not resound more with me more.

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The slide highlights the main “Layers” to addressing children with uncontrolled asthma.

“We need to set up layers of support, clinicians, nurses, health care assistant, educators…etc”  Dr. Dr.Stanley Szefler

The Building Bridges for Asthma care is all about the integral bridges that are built to ensure that children with asthma have symptom free days and fully participate in the school experience.  The child is the centre of the problem and the solution. The layers come together to build the bridge, to the solution.  Since children spend the majority of  their time at school. there is a statistic on the number of  hours… ( I can’t seem to find that right now). The problem needs to be addressed at school, supported by many layers. Parents provided consent and access to  their childs’ medical history. Throughout the  school year  the children that enrolled in program had their absenteeism, physical activity and asthma control level monitored by the  nurses who would communicate with parents and  health care providers.The program  took the the information and provided the data to both parent/child and healthcare providers, to make adjustment where necessary.  The initial results indicated that those enrolled in the program had a decrease in school absenteeism. There was a wonderful opportunity to speak with a parent and child of the program and  here about the impact on not only on absenteeism , but asthma control and improvement in quality of life. They were also awesome and great to speak with.

The program provides direct access to care where needed and education. School nurses receive  training in inhaler technique, asthma management and the  Building Bridges  program prior to the school year. These nurses are optimally prepared to  work with asthmatics students, thus reducing  school absenteeism and improving student quality of life.

I had the opportunity to meet with some the stellar school nurses. Each one of them were simply amazing. Personally, meeting both Donna Shocks ( Manger of Nursing and Student Health Service, Denver Public Schools) who was integral in the development of building the program with Dr. Szefler and Sheila  Morgan  (Asthma Counsellor at Children’s Hospital Colorado) were personal highlights for me .  I wish I had  chatted more with Dr.Szefler. Of course, I was too busy chatting with the other amazing folks.They will absolultey be my advocacy strength, when I think things are too difficult or I can’t go on.  They highlighted that we really need to bring it back to  being “child centred” when we run into opposition. These are words to live by.

The summit also included an opportunity  for a bloggers roundtable, and a chance to  dialogue with GSK on working together. It  was a much more open discussion than I had anticipated, and I think there is a real opportunity to share the good work of Pharma beyond the laboratory. If the day had a clear theme, it was about layers. I think Pharama is an important layer in patient care and not just from a pharmaceutical point of view. They can be a conduit of information, provide clarity and there are surprisingly many opportunities for them to be a support network. I bet there are many programs that patients have no idea exist.

I am looking  forward to continued advocacy work in the future. I was too busy meeting amazing people, that I failed at taking decent pictures or enough of them. You can catch up with the adventure in pictures by checking out Kerri’ recap.

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Goodbye stormy Denver

*Note: GSK provided me with travel reimbursement to attend the GSK Asthma Summit. However, this post is voluntary, represents my own views and I was not paid to write it

Next steps

I have had  the pleasure of being on the NAPA ( National Asthma Patient Alliance)  Executive committee. At our  recent meeting at the the Clearing the Air, Asthma and Allergies in a time of Climate Change conference, we had a great discussion about advocacy  projects and how to get members to engage. This led to a  multi layered discussion about what do patients want?  I don’t think there are any easy answers to what patients want. The truth is that we all want something a little different. For some, they are looking for peer support, some want a sounding board, some to be the squeakiest wheel, some to  feel connected  by more than this disease.

I am truly grateful to be attending the the GSK Asthma Summit next week and getting to pick the brains some great advocates and industry experts. The Summit will focus on the school based asthma management (an area that NAPA has been doing a lot of work in ) and asthma health disparities.

Note: GSK has provided  travel reimbursement for me to attend the GSK Asthma Summit.  However, this post is voluntary, represents my own views and I was not paid to write it

The organizers have encouraged us to prepare our questions.   They may be sorry they did, when I show up with my list! What questions do you have? There are so many things  that  I want to inquire about, from the importance of patient education,peer to peer support, early intervention and access to the right information and care, to the trend of personalized medicine  and biologics. So much awesome learning and science. Could there be a better combination?

New Horizons

It has been a while since I have posted anything.  This blog was  once a vehicle for life during a clinical trial. It was soon replaced by the ease of Twitter and Instagram. As my life evolved, so did my desire to blog about the not so great parts of a clinical trial.

The good news is that a LOT can change over several months. I successfully completed a double blind and open label study. It was such a roller coaster, but I  have no regrets.

I  saw the benefits of being on a   anti IL-5 drug ,but also had to deal with  realities  that it wasn’t exactly the “miracle” drug that I secretly hoped for .There  were some great benefits, I was able to come off daily prednisone for a while, which was awesome. Unfortunately, five months after the conclusion of the trial , I needed to return to daily prednisone and had a bit of a dig in my health status. I refuse to let this get me down. I continue to forge forward  and make great things happen.

Stay tuned.

Get over it!

Aside

Today was a strange day. I went to a funeral for a very dear friend; he had a long bought with illness but managed to get the most out of every day. Since I have been feeling epically frustrated with these lung, the clinical trial and yes, sorry for myself! I have been a bit out of sorts of late.

The funeral was very  sad but also very uplifting, in a twisty kind of way.  My friend ha a great way with people. It did not matter if you were a nosy neighbour or a friend of his. He was always engaged in making you, the best person you could be. It seemed even his eulogy  make that impact. It was nice to  have things,  put in perspective  and smack me out of my  funk . ummm…  I am not dead ,so I need to stop acting like the world as I know it, has come to an end.  People live a long time with illness and so can I.   I need to get over  crap and push through it.

I am looking forward to tomorrow being a better day. I have one minor  health thing to deal with but all in a lll, it shoud be a good day.

I am hoping for sunshine!!!!!!!!!!!!!!!

Placebo effect…perhaps

While I am usually super supportive of others good fortune and general goodness but  when you are in funk, it is really challenging to stay positive.

Here is a quick recap of what’s been happening ( reader beware, there are elements of self pity below).

Respiratory situation 

“You can’t always get what you want, but if you try sometimes, you might find, you get what you need.”  ― Mick Jagger

Last week, I had a sudden respiratory situation that got classified as an exacerbation. I reallyy freaked myself out, suddenly  able to breath, choking on a giant mucous plug. It was nasty and unusual for me, to have an incident of that magnitude ,without warning. Since a lot of the data  as not available to the PI ( principal Investigator) due to the restrictions of a blinded study; a decision was made based on the perception of symptoms.   I can  not begin to express how much this sucked. Not only a prednisone burst but a return to a higher baseline, since this is the part of the study protocol.  If I  stay stable, I may be able to carry on  with he prednisone reduction..maybe..  The  ability to end the trial at the lowest possible dose, is no longer an option.

I  had my  biggest  fear about participating in the clinical trial, come to fruition.  There is a  high probability that I  may be in the the placebo group!  Of course, nothing is certain and no one is going on the record, to confirm or deny this may be the case.  That would be a huge NO,NO in the clinical trial world.   Blinded study, creating bias, code cracking….etc I of course ,don’t want  to  impact the trial results or create an opportunity  for  bias but  when you are not getting better and  most of the data  indicates that people who had participated in previous trials ( who received the active drug), did improve. It is difficult to stay positive…

Marcia, Marcia, Marcia…

I tried to be gracious, supportive and positive but I really wanted to tell another  trial participant to “f#*% off “today”. ( yes, this is my pity party!). I could hear her share her delight with the doctor ,about  how great she was feeling and how  fabulous the drug must be.  She did confess, that it could also be the best placebo effect ever! That secretly made me smile. I really wanted to tell her, to  “shut  up”, because not everyone was  sharing her enthusiasm for the trial experience. I  probably could not have been any greener with envy than I was in that moment, Why wasn’t I feeling better? Why wasn’t I on a lower dose of prednisone? Why did she get the wonder drug?  I think I instantly turned myself into Jan Brady…Marcia,Marcia,Marcia ( see cultural reference here: http://www.youtube.com/watch?v=ICVXf8Vznec)

I  willingly agreed to participate in the trial, even with  the 50% risk  of getting the placebo and now I am living with that potential reality. The reality sucks!  I have to admit ,if I realised how difficult this may have been. I am not sure ,I would have agreed to participate…  I also almost withdrew myself last week, the thought of a pred burst and remaining at a higher baseline for three more months, was just too much. I am super busy at work for the next few months and and I was just starting to get my work productivity back. I did not want to discard that  for a potential placebo.  I am having to dig deep inside myself, for the strength  to keep dealing with these lungs. I know I can do it  but is it wrong for it to be just a bit easier and a have  little forward progression?

I think this article, puts it into perspective http://www.psychologytoday.com/blog/spoonful-sugar/201303/following-doctor-s-orders-risk-vs-reward-in-life

FIVE ( or 5mg) is the magic number

5mg  was the magic number today but unfortunately, not a number I would see.  Since my PEF and PFT’s were lower than last time, I was not able to reduce my prednisone to 5mg. There are some significant consequences to having an exacerbation ( which could have been brought on by  the lower prednisone dose), you have to go back up to 30mg for a week and then reduce to a higher baseline.  I would  have have to stay at the higher baseline for the next  4 months. yuck!  It would also have  concluded, any more prednisone sparing attempts; the whole purpose of the trial.

I was pretty pumped, that I was going to be that much closer to 0 mg  but it would not be in the works for today.  I should have been more cautiously optimistic.We will try again, in another 4 weeks.  I am still working on my understanding of peak flows and how they relate to PFT’s. This was part of the decision making processing, on the lack of dose reduction.

Random  Goodness:  Today, I met  a doctor, who was part of the team ,that pioneered Bronchial Thermoplasty . We had a good discussion. Lots of food for thought. I  also got to expand my knowledge on bronchoscopy and life post bronch. For example: you can have goofy lungs for several weeks post bronch!

I have included a photo from the lounge/meeting room in the research lab at  the Hospital. It is where you wait post dosing. It  is a nice space but sort of feels like  a cross between summer camp and detention. Although, these books ( see photo) are amazing and some legends/pioneers/smarty pants in the Asthma world have read them. There are amazing research Coordinators/RT’s/Doctors that check on you. If you are in the Cat Allergy study, I heard they bring you coffee (Tim Hortons) and possibly donuts . The donut part, may be a myth but I would like to find out, if it is true.Those folks spend many hours waiting in Research area. They also get a lot of swabbing done. I could do without the swabbing…

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