Back in the Saddle….sort of!

Last week, despite feeling a bit crummy, I got swept away by all the "new year's resolution" workout pics on varies social media sites. I know… I'm not immune to peer pressure! I decided to get back in the saddle, er, lace up my running shoes. I decided to run 1-mile every other day for a total of three days. 

Wow! The first run back was ugly. I mean ugly. Its amazing to me how quickly we loose our fitness level. Sure, I've been doing yoga and weights but my goodness I was not prepared for what a slap in the face 3-months of non-running will do to ones fitness level.

I hacked, gasped and down right felt like I was never gonna catch my breath. But I did….eventually. The sweat poured off me despite the fact that the high that day was only 43 degrees. Down right ugly I tell you! I did get three days of 1-mile each under my feet. I am VERY eager to get back to where I left off and feel good after 5-6 miles, even though my fitness isn't to that level I can feel my muscles wanting it. 

But it might take longer that I really want. I ended up back in the doctors office Wednesday afternoon. I just feel crummy. I'm extremely tired most of the time, a slight increase in cough and night fevers. We settled on doing 15 days of oral antibiotics with a few days of rest.

I feel like its one foot forward and two steps back but I'm determined to get my running mojo back.

Tanner and I completing our first 1-miler! He's got WAY more stamina than I and he alone is responsible for our time of just under 10 minutes a mile. He was totally pulling me along and urging me forward to greatness. Such a good buddy!

~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'

"Nearly Normal", ummm....what?

Me: "Say what?"

CF Doctor: "Your lung function is stable, and nearly normal."

Me: What?!

CF Doctor: "whatever you've been doing, even with the ebbs and flows of compliance, has been working for you."

This is a snippet of my conversation at yesterday's CF Clinic appointment after doing my PFT's. I am blown away. In 40 days I will be 30 years old with CF and quite possibly the healthiest I have ever been. My stats on 5/15/12:

Blood Pressure: 114/70
Pulse: 70
Weight: 123 lbs
BMI: 20.87 (I have worked SO hard for this!! Yay, g-tube)
FEV1: 74% (80-100+ is considered normal; I ranked 74% of woman my age, height and whom are healthy)

I can tell you this, I will not stop at "nearly normal" I will continue to push the boundaries of my health. I will not rest until I am "normal" until CF is no longer. Beyond thrilled is an understatement.

Me, nearly normal!!

~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'

Pulmonary Hemoptysis= Hospitalization Day # Uno

Oh, the joys of the unexpected.

Last Thursday (9/8/11) I was caring out my morning rituals as normal. Which begins by taking long list of medications, eating breakfast, getting dressed and lastly taking the dogs outside. It was a nice morning and so I decided to hang out with the dogs in the backyard to get some fresh air. During that time I had a coughing episode, which is not unusual, that produced bloody mucus. As I kept coughing and spitting. Which is highly encouraged to get the mucus up and out of the lungs, more blood than mucus started to show up. This at first was not alarming as coughing for great lengthens at a time and with great veracity can cause a few broken blood vessels. In the amount of 2 hours I had coughed up a lot of blood and began to become very concerned. Concerned enough to place a call to my doctor.

My first level of response is always to call my doctor to find out if they feel going to urgent care or the ER is necessary. Typically, a trip to either is fruitless as they really don't know how to treat such a complicated disease unless its immediately life-threatening. After a few discussions, Dr. Cohen recommended coming into his clinic to be seen.

I immediately rushed out the door to make the 45 minutes drive to his office. Upon arrival he had a preliminary diagnoses of Pulmonary Hemoptysis, which was only further confirmed after his physical evaluation. There a different levels of Pulmonary Hemoptysis, which are characterized by the amount of blood being brought up and the circumstances surrounding the current health of the patient. In my case, Dr. Cohen felt that antibiotics were necessary and since I had literally just gotten off an oral 14-day prescription of Cipro, a stay in the hospital was warranted. Ugh!

Honestly, I was not surprised. My biggest concern was that I hadn't packed anything prior to rushing out the door. You see, I have a particular set of things that always accompany me to the hospital. Books, pillow, blanket, my own pj's, sports bra (this helps when male nurses/doctors have to evaluate the lungs and with modesty), Bible and my UGG boots for walking around the halls. Nurses always get a kick out of my room, as I make it as homey as possible. I was worried about getting all this stuff. Silly, yes, but it helps ease anxieties making me comfortable when I am alone and is my saving grace during difficult times. I immediately called the hubbs to begin arranging the logistics of my stay. Hubbs works for his parents for which I am grateful. Is step-dad was able fill-in for him for the remaining part of the work day so that he could accompany during the check-in process.

B and I checked in to the hospital about 1pm. Check-in can be the worst part of the entire stay. I had to have a Picc Line placed, x-rays, blood work, etc...... I hate Picc Lines. They freak me out. I have to have to take anxiety medication for it or I cry uncontrollably during the procedure. It's really all psychological as they do a great job in numbing the area and I feel no pain. Once they have the line placed they immediately begin infusing two different anitibiotics. The first was Zosyn and the second is Tobramycin to treat Pseudomonas which are the underlying cause of the Hemoptysis.

Picc Line preparations-anyone recognize what t-shirt I am wearing?

At first dosing of each antibiotic things appeared to be going smoothly. I was a bit tired but other than that I felt pretty good. B and I decided it was safe for him to return home to get a good nights sleep and to pack me some comforts for home. My mother was going to take Friday off to be with me so that B could finish out the work week (we need the $$$, sadly). B left around 8pm to make the 1hr trek home. I fell asleep and awoke around 11pm and would not sleep again for 24hrs.

When I woke I was shivering had a fever and my body hurt. The nurses pilled on about 3 or 4 warm blankets and gave me Tylenol. The Tylenol had no affect and shortly after I began vomiting. My joints began to swell and the on-call doctor probably had no idea what to do for me. They gave me Vicodin for the pain and anti-naseau med's thru my Picc line, all in addition to my continued antibiotic regimen. The best description I can give and did give was that I felt like I was being poisoned.

The battle continued all night. All night I was shivering uncontrollably causing my muscles to ache my joints to become swollen and painful. I was sweating from the fever and I was alone! I had no comforts of home since I didn't have a chance to pack and it was in the middle of night.

Hopelessness threatened me.....

~Doodlin'

CF Clinic

Different hospitals and/or doctors offices that are registered CF Care Centers thru the CF Foundation host what is commonly know as CF Clinic. CF Clinic is a specified day that patients see all the necessary doctors or caregivers that are pertinent in treating CF. The most common grouping of doctors is a doctor who's speciality is CF along with a dietitian, respiratory therapists, social worker and/or counselor. Patients see all the above at different times thru out the year but every month or 3-months patients can see them all under one roof.

This can be intimidating. It's typically a much longer appointment; 1 to 3 hours, and it's a lot of information in one sitting. For me, I LOVE CF Clinic. I am a busy person and to be able to see everyone in one big swoop is super duper convenient for me. But besides the convenience factor, how awesome is it that we get to have all our doctors/nurses/therapists (caregivers) in the same place at the same time to collaborate care. Problems are typically solved or at least a game plan is developed so much faster this way. All the caregivers are on the same page about your care, since they've spoken directly to one another which also allows for a more open dialogue, versus email or by phone or worst yet by me relating the information to each one.

Today was my 3 month CF Clinic. My appointment was at 1pm. I always get nervous during the drive because even though I might feel good, the numbers from different evaluation tools don't lie and reflect a decline. I know it seems silly to think that if I feel good then the numbers should reflect that, but the truth is that we sort of become accustom to feeling a certain way after awhile, therefore, a light cough might not be noticeable to the patient as they have become complacent but the PFT's (pulmonary function test) could show that infact the lung function has dropped slightly. The entire objective of having CF Clinic at regular intervals is so that small changes can be adjusted for before things get out of hand or worst does damage for which the patient can no longer regain lost ground.

When we CFer's check in for clinic we are almost immediately taken to our examination room. The less time we spend in the lobby with sick patients the better. The logistics for how each clinic is ran varies. At  my clinic which happens to be with Kaiser Permanente in Portland, Or. each patient is assigned a room and will return to the room for the duration of the appointment. So, if I go to x-ray or the lab, I would return to the same room. This is for sterilization reasons. Here is the entrance to my room today....

As you can see, each caregiver check's off if they have seen me or not. This helps the flow as caregivers move from patient to patient. My first stop after checking into my room was with 'Respiratory'.

RESPIRATORY:
Our clinic always tries to have the patients go to respiratory first so that a base line of health can be established for this appointment. What happens is we use a device called a Spirometry that is attached by cable to a computer to measure our PFT's (pulmonary functions test) because CF is predominately a lung disease this helps the caregivers to know what sort of direction your health is going; stable, decrease, increase. For me, my PFT's have sort of leveled off or have been in the same range for a few years now. This is both good and not so good. We never want to become complacent we always want to find ways to improve the health of my lungs. Today's numbers after doing the PFT's were a bit low, which I was not 100% shocked about. I have been feeling a bit more fatigue than usual, I have a bit more of a cough when I lay flat to go to sleep and upon waking in the morning.

A little snap shot of what the device I blow in looks like for PFT's

I love the hot pink nose pinchers! Got look good when doing these sorts of tests, right?! Let me be clear these tests are not easy, you have to take a BIG BIG breathe in and release it as quickly as possible then in the same breathe continue to push as much air as you possibly can muster. For many CFer's this induces long bouts of coughing, the kind that makes your abs hurt.

The results from my PFT's are given to the physician who will be seeing next. I then go back to my assigned room (which happened to be right next door to this room).

DIETITIAN:
This is where we talk about my weight and how my feeding tube feedings are going. With the guidance of a dietitian we can make any needed adjustments. We also talk about my diabetes because that plays a significant role in my ability to gain weight. No, I am NOT on a special diabetic diet, I would look like a walking skeleton. I am on a very high caloric diet. For example; I used to do my feeding tube 5 nights a week but I have since decreased the number of nights to 3 and have maintained my weight for over six months on the 3 nights only!

SOCIAL WORKER/COUNSELOR:
This is such an important component to overall health when battling a terminal illness. We chat about all things that are going on in my life as well as how I feel I am doing in my journey with CF. I personally have and still battle with episodes of depression. In working with my social worker we have a game plan along with anti-depressents. We also talk about positive things that I can do in order to enjoy each day more. For example, sit outside for 10 minutes just taking in slow deep breathes. It's amazing how fresh air and quietness can rejuvenate a soul.

This piece I believe is fundamental.

DOCTOR:
So, the doctor is typically the last person we see. The doctor consults with everyone before seeing the patient or many times they all talk together along with me. The doctor allows me to ask any questions about any of the test results or to bring up other concerns that I feel need to be addressed. I also talk with my doctor about my diabetes because he also specializes in Endocrinology. Then my doctor and I (yes, I) talk about what we can do to facilitate the best care. I truly love that my medical team values my input. They work from a philosophy that the patient must be educated about their care, willing to carry out their care plan and able (physical, financial, etc) to carry out the care plan. If one of those pieces is missing then it won't work.

CONCLUSION:
I am on a 14 day round of Cipro for a sinus infection and we are adding another nebulizer treatment to help boost my PFT's back up. So I am taking it easy for the next 2 days or so while the Cipro works on fighting my pseudomonas and try to fit another neb treatment into my daily routine.

But because I am such a good patient and for all the times I didn't get any treats because they were chocolate I got a huge bag of my favorite bit size yummy's.

I left CF Clinic at 3:55pm! Phew. So I hope the mystery around what happens at CF Clinic is no longer such. Please ask me any question that comes to your mind, if you are thinking it I am sure others are too!

~Doodlin'