Friday, October 11, 2013

I'm Back...........Here's An Update!

I’m back!!!! Well at least for this blog post anyway.  When I do not update or write something on my blog every week or so I truly do miss coming here to blab.  I know there are others in the internet world who come here often enough to see what is going in my life, my family’s life, or to read what I have to say. I thank you all for showing an interest in what I have to write about.  I guess that means what I am doing is impacting at least one person! So I apologize that I haven’t been on here to give updates or to blab about what I have found relating to our cystic fibrosis community.  It’s not that I do not have anything to blog/update about.  What I do not have is free time to commit to this as often as I may like. 

The month of September was very busy and October looks like its going to turnout that way as well.  For me, I love to be busy and active as it keeps me going! The month of September started off with us discovering why Maria has been feeling the way she has for a long time now.  I blogged about it in this post.  It was another discovery that was added to my wife’s list of life changing events these last three years.  Sometimes in life, things just start to pile up on people all at once, or so it seems that way.  There is a famous quote that people like to reference “God gives us only what we can handle!”  I do believe in that quote but sometimes it just doesn’t feel like in life you will ever get a break.  From my perspective it hurts to see the woman I love more than anything in this world having many things thrown at her at once.  I truly will never know how it feels to be in her shoes let alone anyone else’s.  But through these past three years, Maria has taught me invaluable life long lessons that I will never forget.  Those last three years the deck of cards has felt like it has been stacked against her and us on numerous fronts but somehow someway we have overcome them.  She has shown what it means to be involved in your own health. Never once has she given up on trying to find out the reason why she wasn’t feeling right.  There were doctors who said nothing is wrong and she could have stopped there but she was determined to find out the reason she was not feeling 100%.  She pushed this hard because she wants one goal to be on this planet for her family.   For all of those who ask me how Maria is WE thank you for keeping our family in your thoughts!

Also, in September we went on our first family vacation with Alayna for two weeks.  It was a big adjustment for us all but more so for Alayna and me. When we go to the beach we usually do whatever and whenever we want.  For me that means fishing all day from the beach! For Maria that means falling asleep while listening to the ocean in her beach chair.  This vacation I hardly went fishing and Maria did not fall asleep for one single minute on the beach.  All the whatever and whenever stuff that we do at the beach went out the door.  But I was able to see what its like being a SAHM (stay at home mom).  Let me tell you it’s not easy at all but it is the most important title a mom or dad or even babysitter has.  As I work full time and basically only see my girls for a few hours a day during the week and then the full days of doing errands on the weekend it really opened up my eyes.  I guess I didn’t realize how active Alayna truly is.  As my mom says she is a busy body!!  I honestly cannot say enough what it means to have a dedicated SAHM!  

Once we did get into a routine and were adjusted after the first 5 or 6 days we didn’t’ want to come back home. As for Alayna, she loved the ocean and loved the pool. We really didn’t take her out until after 4 pm since she is so incredibly pale. The only thing that bothered her on the beach or going to the pool was sunscreen.  She hated having sunscreen rubbed on her. We did have a great trip and it was much needed to get away.  We made some great memories and took hundreds of photos.  It looks like vacations will no longer be about Maria and myself like they use to be.  Next time we know what to expect and it should be a lot easier once Alayna can walk on the beach!

October is a special month in this house.  Alayna will be turning 1 year old on October 17th! Uhm really???? I cannot believe I am typing this.  Where has the time gone? If this is how life will be from here on out I need to get more timeouts in this game.  Alayna is growing faster than I could ever believe.  I will keep her latest advancements until her official 12 month post. She is getting more and more active every day though.

Last but not least, my CF update.  As many of you know that read and follow this blog, I have a boring CF life.  I prefer it this way. Not much is going on in that department minus the upcoming clinic visit close to the end of October.  I am anxiously awaiting to get back to clinic as the last time I didn’t feel 100%.  I was battling a cold and my PFT dipped.  As I just reread that post, I told myself that I wouldn’t let my lower PFT score bother me.  I actually can say I haven’t really thought of it that much since my visit. It must be because I was able to get over that cold with finally no antibiotics. I credit that to my HTS and my compliance streak. Today, marks 250 days of 100% compliance.  I know that compliance streak is paying big dividends for me!!! Anyway, I am hoping this next upcoming clinic visit will show that my numbers are going in the right direction. 

I did finally manage to get a new compressor for my aerosolized nebs. My old machine was a dinosaur coming in at well over 10 years of service.  The reason I was in the market for a new compressor is I noticed over the last month or two I wasn’t getting my full neb of hypertonic saline in my 20 minute airway clearance session.  I would look in the neb cup once I was through vesting to see that half the neb was still left. So I began researching what kind of compressor to get. I went on cystic life and found that people really love the 50 PSI compressors made by Mobilaire.  The 50 PSI units reduce the amount of treatment time it takes to nebulize aerosolized meds.  So I talked to the respiratory therapist at my clinic and she said the best compressores to get are the 50 PSI and good luck getting insurance to approve them.   I found a medical equipment company who would take my insurance and I was able to have them cover my 50 PSI unit.  I did not get the Mobilaire unit as the medical equipment company was not able to order the unit. But this Medquip compressor is really a fantastic compressor.  I can control the amount of PSI (pressure) that is going to the neb cup for my own comfort.  So far I really love the compressor. I have been using it about a week now and I would never go back to a compressor that doesn’t allow you to control the PSI setting.  It is like night and day with this unit.  Now my neb cup is completely gone in less than 15 minutes. Not only is my neb cup empty I am hacking out a bunch of mucus during airway treatment.  I LOVE HTS and my new compressor.  If your compressor is on its last leg I suggest looking into getting a 50 PSI compressor.  You will not be sorry!

I promise I will be back on blogger soon as I have much more to blog about.  My next post will be Alayna’s 12 months and then after that I will most likely talk about my CF clinic appointment at the end of the month.  I did find some cool stuff to blog about in the coming posts we will see if I find the time in my busy life.  Here are some of the upcoming topics I plan to hopefully blog about.

CF Patient Registry data: USA vs. UK what are we doing right and what needs to be improved in the USA CF wise.  PFT data, bacteria data, median age, antibiotics, clinic visits, airway clearance methods, etc. will be blogged about.

Vertex and Kalydeco:  How much did it cost Vertex to bring Kalydeco to market?  Why does Kalydeco cost so much? Can the US healthcare system afford Kalydeoc?

CF and Stem Cells: This topic is very interesting and thanks to a friend for emailing me some great articles on CF research in general.

Cross infection in Cystic Fibrosis: Is it real? What can we do about it? How will it change the CF landscape for years to come?

****I also made a list of things that I would blog about at the beginning of the year and I have yet to get to some of those. So I may not get to the above list like I may want to.  But if any of these topics interest you and you really want me to write about them let me know!***

Picture time...............


  1. Congrats on your compliance with your meds! I still struggle doing full compliance with them. I do them about 80% of the time.

    1. Hi Ashley thanks and welcome to my blog! I have been so motivated more so than ever after holding my daughter in my arms. I usually have been 98% compliant but now I just have been keeping track of it 100% compliance. For me I started with a week, then a month, then another month. It's actually addicting to keep track. i have vested at 3 am numerous times as I don't want my streak to end. I suggest if you want to increase that compliance take baby steps. Start by challenging yourself to a full week. Then keep it up and soon you will have a few months in. Check back in and let me know how its going. I am going to check out your blog as well :)

  2. Cute pics, so glad you had a great vacation. I actually go to go to Florida this summer and swim in the ocean. (Actually stand in the ocean while trying not to be knocked over...). Your wife, sounds amazing and 250 days compliant is AMAZING! How many therapy nebs do you do in a day? How can you do them all with working? I always have to skip meds and never have been a full day compliant. But I would to try it. Thanks for the update John!

    1. Thanks for stopping by Cheriz! We already miss the beach. We loved the sound at night. Also, for me getting beat by the waves really helped loosen the mucus up. Maria is AMAZING thank you! I don't know why she chose me haha. My compliance streak is pretty crazy considering I will not let myself miss a single treatment. I have done vesting at 3 am. I only neb HTS twice a day morning and night. I have been antibiotic free for a year and PA free for over a year as well. I honestly have to say that is because of HTS. Like I said I am a boring CFer. Hahaha. I know peopel who do 5 or more nebs a day and that would be nearly impossible to get them all in and work full time. But I guess it could be done. So I suggest to you to start out with your first day of nebs and get those all in. Then make it a week and then a month. It's fun to keep track. My goal is at least a full year. We will see. Keep me posted on your compliance!! I hope you feel better and get out of "jail" soon :)

  3. Yeah, I think it is easier sometimes to post on the other person's blog too, since you don't know how soon they get replies on your own. Yeah, I may try to complaint again. I do albuteral, HTS, pulmo, cayston (morn), albuteral, cayston (afternoon), and then abluteral, HTS, cayston (evening). Its soo crazy with working and going to school. But maybe, I am lucky tooand have an amazing significant other. My boyfriend andrews makes my meds and feeding so its reading when I get home, But, yeah I'd love to be 100% compliant- great goal. And yeah, I think I'll only be in for a few more days, then home on IVs :-) Can't wait to hear about Alayna 1yr birthday :-) exciting, she is adorable!

  4. John keeping kick butt with your compliance! Treatments are money in the bank. They Thank You now and years down the road! ENJOY Alayna's B-Day :)