The Other Side by DH

Below are some of my notes from when I recently spoke at the CF Family Forum.  It was a great day of information and encouraging stories of how people are living with CF. What an honor it was to be asked to speak at it. I didn’t change them much for this post so it may seem a little chaotic. They assigned the following four questions to me. The post is a little long as was my little speech.

Hope and Perspective

1) What do you see as the biggest challenge for a spouse of a CF patient? 

--roles and which one I should be doing – what hat to put on

-husband, cheerleader, encourager, accountability, pusher, helper, nurse, respiratory therapist, financial, house keeper, cook

--watching the person you love slowly deteriorate 

2)  What do you wish you had known from the beginning (or earlier)? 

--the progression of CF... to better know what was coming

--how daily life issues affect energy (see spoon theory from earlier post)

--how to be a good advocate for her

--available financial help programs

3) What was the hardest learning curve about the financial stressors and insurance problems? 

Insurance

--that it simply takes time 

--need for documentation, and how to track everything – developing a system that works for you and that we both can work

--don’t assume dr.s offices and hospitals don’t make mistakes on billing

--be proactive

Financial

--how to adjust living based on whether or not she is bringing in an income due to illness

--hard to budget with an ever changing monthly cost with prescriptions and such

Know which questions to ask!!!!

Be persistent.

4) How do you cope with your feelings and emotions and take care of yourself?

Practical things and Life Perspective

Accept the reality of CF – it is chronic, it is progressive, you can do everything right and she will still get worse

Practical

--support of family and friends – build a support team

--taking quiet time and getting the sleep you need

--transparency with tiffany

Philosophy of life or life perspective

--keeping a forward looking view and not letting CF control your life but realizing it does influence your life

--having the right view of CF – not becoming angry about it – realize that CF makes her who she is

--faith in God and that He is in control

--because she has placed her faith in Christ, the worst that can happen is that she die and go to heaven 

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.

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!

The other side by DH (Dear Hubby)

Last week Tiffany and I were talking about CF and all of the people involved in the facilitating and supporting the treatment process.  We were joking around about how much her CF adds to the support of the economy.  Below is a list of the people I could think of that have jobs because of Tiffany’s CF -- maybe you can add a couple I haven’t.  Just think, without CFers the economy would be hurting more than it is today -- I am glad that we could help someone out with job security!  Here is our list (names are protected for privacy issues):

CF Center

Dr. G. -- CF primary care doctor who oversees all of the CF care.

Nurse P. -- adult CF nurse (the person who gets it all done)

Nurse B. -- peds CF nurse who is the back-up when Nurse P. is not available

Respiratory Therapist C. -- runs PFTs (Pulmonary Function Test) that help determine lung function

Respiratory Therapist R. -- tag teams with RT C.

Nurse Aides -- two different nurse aids who check Tiffany in and get all the basic numbers and ask all the annoying questions.

Receptionist of Pulmonary Department -- tell us to go back and get all our insurance info, scheduling

People in Billing

Social Worker J-- she helps us with basic info and helps most folks with basic info on social programs

Nutritionist B. -- she helps oversee the nutrition side of CF (many people don’t realize that most CFers have a hard time maintaining good weight because their body does not produce enough enzymes -- this is actually one of the main areas that is treated in CF)

Other Dr.s and providers

Dr. Mu. -- ENT doc who oversees sinus treatments and performs surgeries

Dr. Mu. nurse, assistants, and billing -- helpful team to Dr. Mu.

Dr. Ma. -- Endocrinologists that oversees diabetes treatment

Dr. Ma. nurse, assistants, and billing -- helpful team to Dr. Ma.

diabetes trainer -- did initial training on pump and available for questions

Ping salesperson -- sold us on the Ping pump

Insulin Pump supplier -- customer service people and order fillers

Johnson and Johnson developers -- they are putting a lot of money toward diabetes treatment (can’t wait till the closed loop system comes out that tests, reads, and administers insulin)

Drug Assistance folks -- these people help you with medicine assistance in either getting discounts, copay help, or free medication (I think we have 3 different programs helping us)

Hospital

Admitting personnel -- admit you and go over billing and insurance

transporters -- anytime you need to go anywhere they are there (and usually late -- we get forgotten once for 45 minutes in a hall way of the operating wing)

Dr.s and more Dr.s -- We had nine visits in one day last hospital visit, attending dr., infection dr., CF docs, psychologists (it is always interesting to watch them -- they don’t know what to do with people like us), etc. . . 

Nurses -- usually two a day (ours are pretty good usually on the floor and pod that they put all the CF patients)

Pharmacists

Respiratory Therapists - usually see one four times a day -- they do all the breathing treatments and CPT (something??? pulmonary therapy -- they pound on you or use a machine that vibrates that breaks up the mucus in the lungs)

Home Health Care

P. the pharmacist assistant

Multiple delivery people

D. the pharmacist

L. the billing person

Nurse D. -- oversees Tiffany’s care when at home

Nurse C., M., and C., -- fill in for D. especially in evenings

Testing

Blood work people

Sputum Culture people

Medicine

Development

Pharmacist M. at primary pharmacy-- our primary pharmacist who works wonders for us and is very helpful

Pharmacist assistant -- checks us out and helps Pharm. M.

CF pharmacy pharmacists

RS pharmacy  that does 3 months prescriptions

compound (mixed solutions) pharmacist

Insurance

Customer service reps

clinical and pharmacy reviewers -- people who determine whether a drug or procedure is needed

Pharmacy team -- tell you who to talk to and what your policy covers

Nurse L. -- insurance nurse that wants to help but who we don’t talk to (don’t want to muddy the waters)

Wow! This list got longer even than what I was expecting. At minimum, over 50 people a year have their job in part to help treat Tiffany’s CF and its side affects. Now, I wonder what that would look like in dollars and cents? I am sure that would be more than I think also.