Saturday, July 31, 2010

Music Camp Musings

Last week I stayed busy heading up the piano track of IBC’s Music Camp.  What fun!  I was spent several hours each day working with 7 young people who are all passionate about playing the piano. From one on one lessons to ensemble rehearsal, we were able to learn from and challenge each other.   The week closed out with several concerts and they all did a great job.  

Here are some pictures from the week.

Now the goal is to let down; enough to get healthy for the fall semester but not crash and burn, ending up on iv’s.  So, the plan is to rest, stay on top of my routine and let God take care of the outcome!

Friday, July 30, 2010

Friday Fill-in

-passed the 1000 mark this week....thanks so much for visiting my blog

-I wish it would rain already (ok it rained some Thursday night...stuff cooled down a little)

-God’s creation is awesome...just check out these pictures   Sea Slugs

Thursday, July 29, 2010

Explaining a Chronic Disease-The Spoon Theory


One of the difficulties that living with a chronic disease presents is that of trying to explain what life is really like. For those that I interact with on a daily basis, for that matter, even my husband who has lived with me for 13+ plus years (whoohooo-love you sweetheart) it is hard to effectively communicate the reality of what I face on a moment by moment basis. 

There are things that they can grasp factually; for instance, that I have to spend hours doing maintenance treatments, I need to have someone or something “pound” on my lungs to shake the thick, sticky mucus loose (sorry if tmi), I am really susceptible to bugs and colds, I cough all the time, etc.  However, it is hard to explain how CF affects how I make choices, how I schedule my day, etc.

The following is an article written by a woman who is fighting lupus.   She has found an effective way of communicating the impact of a chronic disease.  I would strongly encourage you to read through this.  I believe that it will help give a glimpse into the life of those fighting for each and every day.

Wednesday, July 28, 2010

Becoming by Beholding

I have been challenged lately in my walk with the Lord as I seek to become. A thought that has stuck in my mind is that one of the ways I can become is by beholding Him.  Knowing the truth of my God is what changes me!

A song that I recently played reflects this...

    Moment by moment I’m kept in His love;
 Moment by moment I’ve life from above;
 Looking to Jesus till glory doth shine;
 Moment by moment, O Lord, I am Thine.

Monday, July 26, 2010

The Other Side by DH (part 3 of organization)

When we first started doing IVs at home we would have bags all over the living room with tubing, drugs, needles and other paraphernalia left in the paper bags that they were delivered with everything all mixed together. Our refrigerator became filled with differing drugs added onto the other maintenance drugs such as TOBI and Pulmozyme that already took up the bottom portion of our fridge. As time went we then got a two drawer clear storage bin that you can see in the left part of the picture below. We stuffed everything in it that we could organizing everything in the plastic bags that the supplies were delivered in.  This was a step in the right direction as we separated everything out and put everything that was the same in the same bag from multiple deliveries and multiple times on IVs. Finally we got even more organized to a system that I would suggest to anyone who will regularly be on IVs such as a CFer whose disease is progressing and needs to be on IVs 1-4 times a year in order to fight down the infections. 

In the picture below you see a 10 drawer organizer that is on wheels. This holds all of our IV supplies besides the heprin and saline syringes (which we left in the 2 drawer organizer because of all of the space).  We bought the 10 drawer organizer at Sam’s club and it is the perfect size.  Not too big that it takes up a lot of space but big enough to put all of the extra supplies in that we have collected over time.  It is always good to keep your old stuff (please do throw away anything that has expired -- better safe than sorry) because the home health agencies do not always deliver the right amount of something and it is a bummer to run out of something and realize it at 10 p.m. when it is impossible to get something delivered for your dose that night.  We also keep our extra stuff on hand because you never know what is going to go wrong with health insurance especially right now with all that is happening in our country.  Already in AZ we are starting to see the rationing of major health services like transplants being eliminated from state run programs. In light of these types of issues we try to keep a healthy stash on hand but not so much that it takes over or that we have out of date medical supplies.  It is hard to throw that stuff away, but it is not worth endangering Tiffany’s health because something does not work properly because of its age.  

Anyway, we labeled each drawer with what is in it and now it is very easy to put our supplies away and to find what is needed. Whether it is to flush a port or draw blood, I now no longer have to go through bags trying to find the right supplies but have it at my fingertips in just seconds which saves time and frustration. I then leave this supply organizer in the back of our closet out of the way and where it is not in the middle of our everyday life. From this I then supply our IV basket which I will show you in the next post. This last step of getting an organizer with small compartments that holds everything in different drawers has made it so much easier to stay on top of what we have and what we need.  When I get new supplies I put them in the back of the drawer and bring forward the older supplies. i.e. the tubing that start using at the beginning of an IV treatment is usually from the last time that we did IVs so that what we keep is from the current run of IVs. That allows us to usually use up anything before it expires depending on how often Tiffany goes on IVs. Taking time to organize it all with each delivery saves so much time and frustration.  Take the time to do it -- it is worth it!


Sunday, July 25, 2010

Faithful to His Promises

One of the habits I am actively seeking to incorporate is focusing on the truth of my Lord.  With that in mind, I have collected verses that reflect His promises and meditate on one each week.

Here is the verse for this week.

     John 6:27
          “All that the Father gives me will come to me, 
          and whoever comes to me I will never cast out.”

Thursday, July 22, 2010

Music Camp

This week I get to pass along my passion for music with pianists at IBC's music camp.

If you are in town, we would love to see you at the Friday evening concert.

Friday, July 16, 2010

Friday Fill-in

-a golf tournament sponsored by John Deere-somehow this sounds like an oxymoron

-the crickets and cicada’s were singing away this week (it brought a smile as I thought that they were taking the opportunity to praise the Lord)

-music camp next week

-it has been hot this week-so thankful for a/c (116 yesterday and no, right now it it not a “dry” heat)

-I discovered online bubble wrap-so fun to pop :-)

-just saw a green parakeet in our front entry area (hmmm that seems unusual for AZ)

Have a great weekend!

Wednesday, July 14, 2010

Faithful to His Promises

One of the habits I am actively seeking to incorporate is focusing on the truth of my Lord.  With that in mind, I have collected verses that reflect His promises and meditate on one each week.

     Here is the verse for this week.
           Psalm 145:13b
                 "The Lord is faithful in all his words
                         and kind in all his works."       

Tuesday, July 13, 2010

The Other Side by DH (part 2 of organization)

The second area of organization is managing your health care providers.  One thing we learned a long time ago is that medical personnel do not always communicate well.  In fact, usually they don’t communicate well.  Although this is frustrating and you would expect them to, we have found that it is best to expect them not to and to over-communicate with the different providers. Some of them are great like our CF nurses -- they respond to phone calls and emails quickly and do what they say they will do and find information quickly.  This is not the norm.

Even though the CF clinic submits orders to home health, we always call home health to verify they have everything we need and go over the orders as they were told us in the dr.’s office.  We also call them right away so that they start acting on it and that we can start the IVs right away. It is ok for you to questions your care -- in fact, I would say it is your responsibility to question your care. Don’t do things that you don’t understand or when some nurse or dr. who doesn’t know you tries to start making decisions that don’t line up with the CF doc feel free to question them.  We have actually refused service in a hospital while Tiff was on IVs until they contacted Tiffany’s CF doc. Once we had nine docs in one day and they all have the answer especially if they are doing their residency .  We get really nervous when some psychiatrist is trying to put in orders on Tiffany’s treatment.  Few dr.’s today have a broad knowledge of medicine -- they are specialists and know their field but beyond that they can get you in trouble.  

If you are using home health, know who you can talk with in the office that will get action.  The reality is just like at your workplace, some people get things done and some people are just there. It is ok to ask for a specific person when you need something. We now have a couple people with our home health company that we won’t talk with because things fail to happen when we talk with them.  We have found that sometimes we even need to communicate with the home health office and with the home health nurse to make sure things get done in a timely manner.  As in most places, getting to know your nurse and being on their good side is vital to any successful treatment whether it is through home health or the hospital.

We ask the home health pharmacy to call us each time before they fill a supply order -- we know what we have and need - they don’t.  They are just following what is on the computer but they don’t see the extra piles of supplies in your living room. I think CFers are a bit of pack rats when it comes to supplies because we never know what will happen or if we will lose our coverage for some unknown reason. Please remember, there is a point when you have plenty of needles for your port and plenty of tubing for the pump. That leads to my next post -- organizing your drugs and supplies while on IVs.

Sunday, July 11, 2010

Clinic Visit

I was able to get in and see Dr. Gong on Wednesday. This is right at the two week mark of being off of IV’s.  It was good and not what I would have liked all at the same time.  My pft’s were down in the mid-50’s.  This has been an ongoing cycle this year.  I can get them up into the mid-60’s but over a period of 6-7 weeks we are back down in the 30’s.  So, we talked about how we can try to avoid this cycle.  

The main focus of the next couple of weeks is going to get off of Prednisone. That is priority one.  I have started a new antibiotic, Cayston, which was just FDA approved in March.  It is specifically formulated to target the PA (pseudomonas). We are hoping that this med will help maintain some of my lung function.

So, not a bad appt.  Once again it seems as if we are in a “wait and see” period.  My personal goal is to work at not being on iv’s in 6 weeks.  Some of that is in my control and some of it is not.  I’m thankful I know the One who is in control.

Saturday, July 10, 2010

Project-organizing my cards

I am a self declared hoarder.  I love to hang on to cards that are meaningful to me (from birthdays, thank you cards, special occasions, etc.).  Thus, I have random piles of cards stashed here and there.  I would like to get these in one place and be able to enjoy them more than when I am moving the stack. :-)

Inspiration hit in the form of this:

It is a handmade watercolor book.  The paper is archival quality and it has 96 pages. I am going to attempt to put the cards in w/ double sided tape so that I can flip through the pages and enjoy my special “book.”  I will keep you posted on how it goes.

Friday, July 9, 2010

Friday Fill-in

  1. I am thankful for not so normal friends :-)
  2. how our God supplies makes me smile-He is so good and He definitely does it in His way
  3. boy, we sure enjoyed our vacation (pics to come)
  4. it is so neat to see the sweet fellowship that you can have w/ friends who have been away-they come back  and you just pick up where things left off
  5. it made me smile to say goodbye to the i.v. pole and pump today (in voice from Toy Story “bye bye now”)
  6. I am excited about the “cysters” on America’s Got Talent and the national attention they have brought to Cystic Fibrosis (haven’t seen them, go here
  7. God’s creation is so amazing and diverse

              Wednesday, July 7, 2010

              Faithful to His Promises

              One of the habits I am actively seeking to incorporate is focusing on the truth of my Lord.  With that in mind, I have collected verses that reflect His promises and meditate on one each week.

                   Here is the verse for this week.

              Isaiah 40:8
               The grass withers, the flower fades,
              but the word of our God will stand forever.”

              Tuesday, July 6, 2010

              The Other Side by DH

              One of the things that Tiffany and I have worked hard at with CF is to be as independent as possible so that we can lead a life that is not constantly interrupted by health care personnel.  That gives us more control over our everyday life and schedule and also protects Tiffany from being exposed to the many bugs that health care providers carry around from other patients that they see.  Therefore we almost always do I.V.s at home and not in the hospital. Over the years we have learned a couple things about I.V.s -- in this post I want to share how we organize our I.V.  life.

              1. Remember that it is your life and your schedule - take the time to figure out a schedule that will be convenient for you to get healthy the quickest.  The biggest consideration of this is what time will you do your I.V.s.  Depending on what cocktail of drugs you are on you usually are either doing drugs every 8 or every 12 hours.  Every 12 hours is much more preferable as it gives you more sleep time, but sometimes you need the every 8 because of the type of drug or because the dr. wants to do more of a specific drug.  We have found with Vanco that smaller doses more often get good results.  If we are doing every 12 we will usually do it on 9 a.m. and 9 p.m. which allows you to sleep in a little and allows you get your evening duties in such as dinner before you start at night.  The other consideration is that it gives a good morning time for nurses to come by if you have to do blood draws. It is no fun to have visitors in your home too early in the morning or too late at night. If we are doing every 8 hours then we usually go with a 6 a.m., 2p.m., 10 p.m. The afternoon time is good for any medical visitors and then the early morning start allows Tiffany to sleep through the meds and I change everything out for her.  It also gives us the option of doing the evening dose (or part of it) in bed.  
              2. The other thing to remember in your schedule is what we like to call hospital time.  The basic rule that I understand the medical profession to follow is that doses must be given within 1 hour of the specified time.  So what we do many times is that we will move that morning does back an hour  so that Tiffany gets an extra hour of sleep (or that I get an extra hour of sleep).
              3. Schedule in all of your other meds as well that you are doing orally.  Some have to be done with meals others may be affected by your IV drugs.  For example, Tiffany takes Bio K which is a probiotic to get the good bacteria back in her -- one serving is almost like eating a thousand yogurts.  Anyway, she normally drinks this right before bed but when when she is on I.V.s we don’t do it then because doing it during the IV or right after the IV basically kills all the little bacteria immediately which makes it of no effect.  So Tiffany takes it at a different time when it will have a greater chance to be effective.  
              4. Schedule eating time and exercise -- this is the one we don’t do very well on, but it is also very important.  When you are at the hospital they just brink you the food and you eat without thinking about it.  At home, you have to take the time to make your meal and eat.  If you don’t do it in a schedule, you will find yourself skipping meals and not getting the nutrition that is needed on a regular basis.  Exercise is the same way -- if it isn’t planned it won’t get done, and many times doesn’t get done when it is planned.  
              5. Schedule breathings and poundings. It is best to schedule these while she is doing the IV. it will help you take advantage of the time better because of how much time the IVs do take. We attempt to do the CPT (pounding) at the end of her IV doses.
              6. Once you have your schedule, write it out. We don’t always do this but when we do it is very helpful for me because I have a tendency to forget some of the things that should be done, and when someone is on IVs they usually aren’t feeling very well and don’t remember everything either.  I don’t know what my excuse is for not remembering.  

              OK - this post is much longer than I anticipated and I am not even close to being done.  We will have to split up the organization according to different categories so we can get it all here.  So I guess this part one of I.V. organization -- make a schedule and good luck at keeping it!

              Monday, July 5, 2010

              Goodbye Conner

              You may remember a post several weeks ago in which I shared a very transparent blog posting from Sarah, a mom of a 7 yr CFer, who was dealing with the decline of her son’s health.  It is with a heavy heart that I share of his home going, almost a week ago.  Here are her words as she shares the very special time that God gave them in his last hours.