May is National CF Awareness Month: Fun Fact #3

Cystic Fibrosis is an extremely expensive disease. It's hard to pinpoint exactly how much it costs to treat CF for a number of reasons, disease severity, insurance gaps, patient compliance, etc.

However, the median cost per year is $40,000 pre transplant. While approximately 95-99% of the CF population has access to some sort of healthcare coverage many have reported skipping medications or reducing usage in order to cut costs.

As reported by the CF Pharmacy my medication costs per month:

ANTIBIOTICS:
Azithromycin 500mg- $466.28

DIABETES:
Humulin R- $53.16
Humulin N- $53.16
One Touch Test Strips- $123.60

ENZYMES:
Zenpep 20,000- $435.88

INHALERS:
Proairt HFA Inhaler- $53.42

NEBULIZED MEDICATIONS:
Cayston $6,786.02
Sodium Chloride 7%- $61.94
Pulmozyme- $2,657.41
TOBI- $8,012.17

NUTRITIONALS:
Boost High Protein- $56.88

VITAMINS:
AquaADEKS softgels- $41.95

TOTAL per month: $18,801.87*

I am so thankful that I have insurance. Most the above referenced medications are a $40 co-pay, which for me puts my total at approximately $480* per month.

Currently I'm a recipient of Social Security Disability which pays for all my medications, co-pays, and other needs related to my healthcare. At the end of each month I have $108 leftover for food, gas, rent, clothes, etc.

It's no wonder why CF patients continue to live with family well into adulthood or in my case I have a spouse who busts his hump each day to provide.

CF care only gets more expensive with age and with the progression of the disease. I am in a good place. I'm healthy (for CF).

*This total does NOT include things like insulin needles, Lantus (insulin), additional vitamins, IV antibiotics, home health care, doctors appointments, feeding tube supplies, the VEST, hospitilazations, etc.

~Doodlin'

Neutropenia Update

You know one thing that I am not great about is updating you all on my medical prognosis once I've been diagnosed. It's so easy to complain or write about how frustrated I am during a crisis, in fact its really helpful on many levels. I get the frustration out instead of holding it in until it boils over in anger or something self-destructive.

I do need to learn to go back to analyze the emotions when I'm well and in a good place mentally against those emotions during the crisis. I think it would be helpful to "see" what trigger points I have. What my tolerances are. Address the fears associated with that diagnosis or at least begin to work thru the fears now that I have the energy and am no longer in survival mode.

I mean, HELLO!, its the whole point of this blog; to turn pain into purpose or something inspirational.

Back in February after 2 weeks of IV's I developed Neutropenia. You can read the original post HERE. However, Neutropenia can become very serious if not addressed quickly. Thank the heavens I have great folks tending to me, as soon as the test results came back from a blood draw, they were directing me to the ER or Urgent Care whichever I could get my butt to fastest.

I am happy to report that within 48-72 hours of my trip to Urgent Care along with the removal of my PICC line I was beginning to feel more like myself. I continued weekly blood draws to ensure that my white blood cell count was continuing to rise. I am now rejuvenating those precious white blood cells at a healthy regular rate.

I'm fairly confident that I know my body. I know when something just isn't right and so does my doctor because I plow up their emails, pagers, and I park my tush in their exam rooms frequently until we figure it out. But sometimes I forget that medicine isn't the fix all. It too can have serious if not devastating results

Life is good. I'm slowly regaining my strength. I've been walking the dogs again and incorporating running. It's amazing how quickly we fall out of shape and how difficult it is to get back into a workout routine. I guess that's my biggest obstacle and it's really just a mind game.

My personal goal is to run a 10k this summer. So, I've got to stop the mind games and just lace up.

~Doodlin'

There and Back Again...A Tale of a CF'er

Its been awhile. I know. Lots has happened both magical and not-so-rosy stuff. From a hospitalization in early October to a lovely dream come true vacation to being sick just before said vacation to a crazy holiday season to being sick again.

There and Back...again!

The past few months I have not been healthy. Just when it seems like we've got it under control and I actually begin to feel slightly better I find myself sitting in the doctors office getting another round of drugs, blood work, etc.

Its toying with my emotions. Like boarder line depression. I'm whinning. I'm getting this out of my mind and soul so I can see the sunshine. I want to be "there" as in back to my base line. I worked so hard for two years, the results were inspiring, but this stint of "back" as in sick is sucky.

As it stands today my lung are rocking FEV1 is 82%, weight is a healthy 123#, energy level is way low, sinuses are looking nasty with a nasty culture of Pseudomonas.

Game plan: tackle the sinus problem. Antiobitics, steroides (I jokingly asked if i'd "bulk" up) and a CT scan.

I should note that I have the most compassionate CF Care Team. Amongst my ugly crying today in clinic they compassionately lovingly guided me back to sanity.

This picture I took on the drive into the city for clinic this morning and it really captures how I feel inside. A ray of light buried among the fog and clouds. But the fog will lift I'm certain!

~Doodlin'

CF Clinic Update

Last Tuesday was CF Clinic day for me. The verdict was both favorable and unfavorable.

However, before I go into all the details I just want to publicly announce (again!) how amazing my care team is. I could not be in such great health without them. They are some of my biggest supporters and they always tell me the truth; good, bad or indifferent. They have helped me navigate my insurance company when I was single, fabulous and broke. They have gently guided me thru some of the hardest years yet in my life. They have been a source of support for B, to help him understand the complexities of this disease and to offer words of wisdom when he most needed them. The folks who will take their places upon their retirement will have some very large shoes to fill. Just saying!

The unfavorable:

Let's just get it over with it. I have lost weight. Even with the dang feeding tube. Enough weight to raise a few eyebrows. I hate scales. I hate how so many live their lives as slaves to the number and how so many wrap their self-worth up in what the meter reads, so we don't have one in our home. Until Saturday. Ugh! However, I knew I had dropped a pound or two just by the way my clothing was fitting lately but not nearly 10 lbs. That is a lot for me. The worst part is putting those pounds back on is an upward hill to climb. Yes, I love food. But I hate doing anything that feels like a job and consuming 3500 calories daily becomes a job or worse a chore. 3500 a day will only help me maintain, therefore, I need to find ways to throw in a few more calories to recooperate the lost weight. I suppose I could simply just do the feeding tube more frequently or all day for that matter, but the goal is either use it only to supplement what I eat or to allow myself enough time to "bulk up" thru the feedings and be able to sustain a healthy weight by eating alone and remove the g-tube, or toobie (a cute little wee-one used this nickname). Well, I don't think either of those options will be occurring anytime soon. Instead, I will be adding more supplements to my real food and increasing the calorie intake (nearly 2000 calories from 1500) per feeding tube cycle. This also means adjustments to my insulin and digestive enzymes because of the increase. Fun, fun!!

The favorable:

PFT's were again astoundingly awesome. Awesome for me that is. FEV1 was 79 (normal: 80-120). There are other numbers that are looked at but I'll save you some time  and give the synopsis; my lungs are doing well. They are actually improving, at least from what the numbers tell us. After the Pulmonologist gave me my print out of my results I had a few folks come in and ask me what my "secret" was and my only explanation is the running and being complaint with treatments. Running requires usage of the lungs and therefore they are worked really hard while running. I have the Vest to help on the days I don't run but I am telling you its the running. I can feel the difference. I move more mucus during and after running then by doing the Vest. The Vest moves some mucus, but those pesky plugs way down in the lung come up more frequently with running. This gives me the ability to take deeper and deeper breaths and the medication from the nebulizer treatments can then get deeper and deeper to help prevent damage and maybe even allow a small window for healing and/or rebuilding of healthy tissue. I don't know but I know running is working. It took nearly a year of running to see any difference in my PFT's. So, CFer's don't give up, it takes some time.

I'll leave you with a video of the actual PFT session that I scored my 79 on.

~Doodlin'

A Little Dream; Realized

For a couple of years now our CF care centers advisory board has dreamt of having a formal support group and I have been quit the annoying advocate for it. A safe place for CF'ers to open up, to share in their journey, to find encouragement when things seem daunting, to celebrate new journeys and new successes, have a place to socialize and most importantly to have a group of others who are walking in the same brand of shoes (the sizes vary!).

After years of debating the ways to go about this and of trying to figure out how to coordinate such a group we have finally put together our first meeting. The meeting was small but amazingly awesome. There was conversation, laughing, brainstorming and all the things we humans do when we get-together when we socialize. Our small little CF center just took one step for mankind and one GIANT leap for those with CF.

For so long I have lived with a disease that not only isolated me much of the time from the things I loved but it also placed limitations on my relationships with others like me. Today's technology has began to bridge that gap, while not perfect it is something better than what we had. nothing.

We as a community as a whole are also learning ways to safely host multiple CF patients within the same room without subjecting them to each others germs and possible cross contamination.

I am elated. I am beyond thankful. I am feeling as thought one small victory in over-coming the hurdles that CF builds has been won. I am so proud of my care team for not giving up and running with my crazy notions. This is something so close to my heart. Something I needed like 10 yrs ago. I hope that no CF patient has to go through such loneliness, such feelings of separation, such feelings of longing for socialization during isolation.

Humans by nature long for and need to socialize on some level with those whose capacity is like theirs. There is real value in developing relationships with those whose life experience is similar to ours. We all are better off in some way or another.

Do you participate in a support group (any group not just CF)? What is the most valuable thing about your support group?

~Doodlin'

Waste of time?

When visiting for CF Clinic we see a plethora of folks in many disciplines of medicine. CF clinic is supposed to be a comprehensive approach to care, therefore, we are seen by ALL those who manage our care.

There have been times that I have felt like a visit with a particular discipline or quite frankly the individual, is less than fruitful. For example, years ago I thought that meeting with the dietitian was a complete waste of time. I knew from the 15+ years of doing this that I needed to be consuming about 3500 calories a day. Our meetings would be about 5 minutes long. Until, I faced needing a feeding tube.

A little background might be helpful. I really enjoy chatting so I really liked the visit with the dietitian from a chatters perspective but I earnestly thought I knew it all and was managing my weight and/or nutritional needs just fine. I was also young and immature, which are huge contributing factors to my know-it-all attitude. Something more deceptive fueled that attitude. The thought that since I have sort of always been drawn to healthy options and a pallet for healthy fats, grains, proteins, etc nutritionally I was golden. I, like, most have a few things that are my guilty pleasures, Dr. Pepper and frozen corn dogs are a few. I added supplements to meals in the form of Ensure or Instant Breakfast shakes or fat soluble powders as often as possible. I honestly felt that there really wasn't anything more I could possibly add to my routine.

As I have matured and have become honest with myself I came to realize that I wasn't being 100% compliant with adding the supplements regularly but rather I was more wishy-washy adding it only when I remember or could stomach it. Truth of the matter was that after years of drinking the limited three flavors it became a chore to get the stuff down or at times down-right disgusting all together. I wasn't consuming the recommended amount of calories for various reasons. I would get too busy to eat or to plan a proper high caloric meal. I found it expensive to eat so much coupled with all the other expenses of maintaining my CF routines. This became apparent and I could no longer hide; the scale, the blood work, the bone density tests all spoke what I was afraid to admit. CF is hard to maintain particularly when your trying to find your way in life. When attempting to juggle all the 'regular' happenings life like college, social calendars, jobs, etc, etc.... crept in leaving little room to focus on nutrition. This was my truth. What's yours?

However, lying post-feeding tube surgery unable to cough or laugh because it hurt so bad, having to change my intimate time with my husband because I now had to accomodate a tube attached to me during the night and having to adjust what I wore because a new thing now protruded off my stomach changed my entire perspective. Funny how a crisis will do that. I wish my change had come proactively, before needing a feeding tube, I wish I would have put more effort into being 100% complaint and 100% honest but I didn't. Now I have to make the most of where I am. Meeting with the dietitian took on a whole new meaning. 

I no longer see the meeting with my dietitian (or any one no matter what my current state of health is) as a waste of time but rather an opportunity to learn new techniques, become up-to-date on what others are doing, leaning about what is working for others. Asking questions about different ways to make it most effective and efficient for me and my schedule. Finding new cheaper just as effective ways to meet my nutritional needs. Being honest with where I am and asking for assistance in making this work for me.

I encourage all patients and parents of patients to communicate honestly with your care team. They are there to help make managing this disease easier. If something is not working or you feel its unrealistic for you, then be honest with that. If paying for things is affecting your ability to be complaint, state that. They should be equipping you with resources or helping find resources within their discipline to assist you.

There is a reason that certain disciplines are included in our comprehensive care. It's not a waste of time. You get to choose to make the most of the opportunity. I encourage you to do so.

As a side note, I feel great now that I am adhering to the plan that my care team and I have collaborated together on to meet my needs and my lifestyle.

~Doodlin'