One Week Update

Well here we are at the one week mark.  Today has been a good day but with some tough reality checks.  Last week I came in through the ER due to shortness of breath.  My oxygen saturation was at 80 and no energy.  Today I am on 4 liters of oxygen and my ox. sat. is around 93/94.  I am on three antibiotics; Vancomycin, Tobramycin, and Primaxin.  I have four sessions of nebulizer treatments (anywhere from 1-4 meds each session) and CPT (aka pounding) each of those four times which constitutes about 2 + hrs of CPT a day.  Mix that in with vitals at the most inconvenient times, blood draws, and doctor visits...occasionally some shut eye and a few moments of alone time with my hubby.  (oh and I can’t forget all the pills that I have to swallow :-) That pretty much sums up what I have been doing this week.

I am fighting two bugs in particular, MRSA (a type of staph) and PA (a type of pseudomonas). These are not new bugs to me-I have grown and treated these pretty regularly.  The oxygen is a new twist.  This is the most I have ever been on oxygen, so that has been a little disconcerting.  Was able to ask some questions of the docs today and get some real insight.  It looks like I am in here for a long haul.  To be honest that is a tough reality for me to swallow. The doc today encouraged me to make the most of this stay and plan at least 3 wks.  Argh!  I am chomping at the bit already.

 It has been hard not to dwell on that this evening.  Several times the phrase “the spirit is willing but the flesh is weak” has come to mind.  The other worry that keeps trying to creep in is the reality of a “new” reality.  As I shared with my hubby, it’s tough because I know that this is just the start of more/longer circumstances like this.  Praise the Lord that through Him we can keep every thought in captivity.  He knows, He is at the beginning, middle, and end of all of this.  I don’t have to fear because He is right here with me.  Now for the practical application of choosing to rest in His working (even if it really isn’t what I would have chosen).

Thanks so much for your faithful prayers.  What a blessing to know of many who are upholding me and DH in prayer.  Your notes and emails are a real encouragement as well and often bring a smile. Thank You

The Latest 8-28

Tiffany is headed in the right direction with some progress on her breathing.  She is still on oxygen and we are going to see if we can start reducing the amount slowly. We have reduced it slightly from when she first came in and her oxygen levels have been maintaining around 93%. Basically now it is the process of just being patient with allowing the drugs to work their magic (of course we understand that they will work their magic according to the will of God ). The dr.s have not even mentioned a time frame of how long she will be in here which means it will most likely be no sooner than the end of the week.  This is that part of patience! There are a lot of CFers in the hospital right now so we have seen the CF docs every day which is a blessing. They have not found any new items to address so we are still just primarily dealing with MRSA in the lungs. -- David (DH)

Tiffany's Card Wall -- Feel free to add to it!

In the "slammer"

In the CF world that is the slang for hospital.  Yes, unfortunately my lungs took a nose dive over the weekend and my hubby graciously took me to the ER on Monday.  So it looks like I may be in here for a while.  I hope to keep up on the updates, but for now I covet your prayer.

Friday Fill-in

My brother and his girlfriend got engaged.  Congrats you guys!!!!

You know it’s hot when you turn on the cold water and all that comes out is lukewarm water.

When recording (a rehearsal CD) it is always nice when all of the technology works.

Back to school madness is in full swing.

Happy Weekend

pics from San Diego

a pier
we enjoyed many walks on the beach

Balboa Park
we visited a Japanese Garden
and heard a concert at the Organ Pavilon

the view from our room

a lot going on...

This past week and a half has been tough and good all in one.  From two road trips to getting off prednisone to spending a day recording rehearsal tracks...it has made for some crazy, busy days.

Unfortunately things started in a way I would not have chosen.  I had a dear aunt that went home to be with the Lord.  She was 55 and had been battling MS for many years.  I was sharing with someone recently that there is no way that I could wish her back here....although we miss her a lot, she has a new, pain-free life.  My hubby and I jumped in the car and made the 13 hr trip to CO.  The funeral went very well.  Many attended and it was a sweet time.

My mom, hubby and I left that afternoon to return home.  We spent some hours at home and then mom and I left for our previously planned road trip to San Diego.  We enjoyed several days on the beach of Pacific Beach.  The cooler temps and the relaxing atmosphere of the ocean was just what we needed.  What a blast!

Among all of these happenings I am still tapering off the Prednisone.  I am currently at 5 mg every other day.  Honestly, it has been rough.  My mood has been up and down.  My DH shared with me “I am just trying to be sensitive.  I don’t know what is really an issue and what is Prednisone!”  I feel the same way.  My body is not excited about me taking away the Prednisone and it seems to be throwing a tantrum.  I continue to remind myself that this is the best choice and allows for more flexibility in the future (as far as using Prednisone to treat future asthma flare ups), but somehow my body, lungs, emotions aren’t buying what I am selling.  :-)

In all, the Lord is so faithful and truly gives grace to deal with the curves that come each day.

An "aha" moment

I was talking with a young lady Friday evening.  She has just graduated with her music degree and was picking my brain about my job and what I did here in the valley as a pianist.  We had a very profitable conversation.  

As I was sharing with her my teaching load she proceeded to ask if I taught privately as well.  I went on to talk a little more about really having to be careful how busy I got due to health concerns.  It was in this moment that internally I thought “I really can’t do any more.”  Now that may not sound so earth shattering....but, it really was the first time that I had thought “I can’t” instead of “well, if I get a little healthier”....  I think that this is an important moment. 

It is bittersweet (although healthy) to come to terms with my limitations.  I am not sure how I feel about all of it...that is something I am still wading through.

The Other Side by DH (organization-part 4)

Here are a couple points for making life on IVs easier.

1. Become as independent as you can from the home health care company.  I learned to access and de-access Tiffany’s port early on.  In fact Tiffany de-access’ her port by herself often and has even accessed it by herself once -- she is pretty brave! This allows you to be on your own schedule and not theirs and also keeps bugs from other people away from your port.
2. Organize your supplies -- see previous post -- trust me this really does help in making life easier but it also gets it out of your living space so your house doesn’t look like a hospital.
3. Get a basket that fits on the base of your pump pole wheels.  I stock this from my organized supply and since we put it on the base of the pole, it is always there with whatever is needed.  I usually have to stock it every other day for some things and only once a week for others.  See the picture below. A longer, skinnier basket works well that sits right on top of the wheels of the pole base. In the basket we place the heprin, saline, tube caps, alcohol wipes, hand sanitizer. the caps, wipes, and sanitizer we put in a little box on one end and then the syringes we put in going different directions to make it easy to keep them separate.  You will always go through more saline then heprin.
4. Get a good pump and learn how to use it without help. We do every medication through the pump even when it is not required.  This is especially important to us when Tiffany is doing them alone.  It gives you much more control especially if you have reactions to the drugs. For example, Vanco is not a very nice drug and Tiffany cannot run it at the speed for which it is prescribed.  We have to slow it way down in order for her not to get Redman’s. No matter how many times we do IVs we have to expressly ask the home health to send the pump and to fill the meds to be used with a pump.
5. Remember that your body needs time to recover so schedule your drugs with sleep in mind.
6. Become friends with your nurse -- she can save you a load of trouble and help you out of a tight pinch.
7. It is ok to let your friends and family help.  If they ask if they can help, see if they can bring over a dinner for you.  We have found that we only want about 3 dinners a week from others because of all of the left overs. Maybe they can come over and help clean your house or apartment.  Once when Tiffany was in the hospital, we had a group of friends come over and clean the entire house and sanitize everything -- they probably worked for four hours and there were around five of them.  It was great to bring Tiffany home to a clean and sterile environment. (thanks guys)
8. Soft blankets are wonderful -- our best are homemade fleece blankets -- you can email Tiffany for instructions on how to make them.
9. Put a towel below the IV pole and on the arm of the recliner (or whatever comfortable chair you sit in) to protect them from drips and such. Some of the drugs do stain carpet.
10. One I haven’t done yet but plan to do next time, with a small wire or ribbon, tie your little basket to the pole.  Inevitably either my dog or my foot will knock the basket over a couple times in a week.
11. Combine other treatments with IVs such as do your breathings and CPT while you are hooked up.
12. Showers with picc lines and ports are interesting.  For picc lines -- cut both ends of a ziplock back off  so as to make a sleeve of the plastic that can go over your arm where most piccs are inserted.  Cover the the bandaging with a washcloth with the bag on top and then tape off both ends. Unfortunately, we have not found a tape that works good every time and we have tried them all from waterproof to basic tape.  We now just use the one inch wide tape that comes from home-health. For a port, use the heavy plastic bags that your supplies are delivered in or a zip lock bag and cut it just a little bit larger than the bandage over your port and needle.  Cut a wash cloth to the size of your bandage and place it on the bandage and then the plastic can be taped on. Do the top first and then the bottom and then the sides.  For some reason, the tape seems to stick better if you stretch it tight as you put it on.  When you get out of the shower have a paper towel ready as water will always get through the tape but hopefully the washcloth will soak most of it up.  Tear off the tape (every way we found still hurts) and then dry off the dressing with the paper towel.
13. We normally have one of those big shower heads that feels like you are standing under a waterfall but we change out the shower head while Tiffany is on IVs for one those shower heads that is on a hose.  We then place it lower for Tiffany so that the water does hit her head but below the port and then she can wash her hair with the shower head because of the extended hose. The five minutes to change out the shower head is worth it!
14. Keep a trash can handy with good plastic bags. You will have lots of trash and plenty of liquids from tubing and left over drugs in bags. You don’t want that leaking out all over. We used to use grocery bags but too many of them had holes and we would get stuff all over.

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.

Music Camp

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 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

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.

The Spoon Theory

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.

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!

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.”

Music Camp

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

http://www.ibconline.edu/ibc/events/camps/music.jsp

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

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!

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."       

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.

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.

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:

http://shop.hobbylobby.com/products/handmade-watercolor-journal-315390/

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.