Thursday, May 21, 2015

In with New & Out with the Old

Nutrition is such a big battle in my life. Having CF and wanting to be active is a double edge sword. I need lots of or rather a ridiculous amount of calories each day just to keep up with the amount of energy my body requires to fight CF but I also have to compensate for any additional output, like running or biking. It's a difficult task. 

I've had many people tell me how they wished they had that problem. That they could consume and consume. Truth is, no you don't. Trust me. If you've ever struggled to loose weight, the struggle to gain and maintain weight is equally as hard. 

I opted for a feeding tube back in 2008 and have had great success with it. However, the goal has always been to get my weight stable and then maintain without the assistance of the feeding tube. Currently, I'm on a 3-month trial of just that. 

I'd say at this juncture, 2 months in, that I'm doing very well. I'm 2lbs away from my "optimal" weight of 123lbs. My personal goal is 125lbs, It just sounds better and it's easier to track then 123 or 127 or whatever. So, what am I doing nutritionally that is different then prior to having the feeding tube placed?

First and foremost, I've educated myself on good nutrition. What I've taken away is that no matter how good we eat or how clean our diets are; we are still lacking. Then when you add into that medications which can and do deplete or rob the body in some manner it's compounded. Only then to add in the inability to properly digest and absorb all that good clean food while trying to minimize the destructive aspects of medications, we're lacking. Plain and simple. 

Secondly, understanding the areas in which one is lacking. For me, its generally vitamins A and D along with minerals. I know this because I pay attention and ask for my labs that are done every 3-months as part of my CF care. 

Thirdly, I supplement like crazy. I add things into my daily routine that help aid in absorbing, processing, and preparing my system to the best of my ability. I add things like soluble and non-soluble fiber, probiotics, vitamins and minerals. I change my diet to help fix areas where I can not only add supplements in addition to adding high caloric meals and/or foods. 

My biggest advice to those struggling with their weight- gaining or losing, side effects to medications, low energy, digestion issues, and list goes on; is to take a good hard honest look at your what your putting into your body. 

Is your diet lacking?

What do you think you could be adding to help?

What do you think would make the biggest impact?

I'm not saying that you have to throw everything in your cupboard/fridge out. But what could you simply add to help your body? 

For me, it's in with the new and out with the old. I want this old feeding tube gone and I'm ready to reclaim my stomach. 


Tuesday, April 28, 2015

Vernonia Half Marathon 2015

My goal for this 2nd half marathon was simply to beat my finishing from the 1st half last September. I'm happy and elated to report that on April 12th, 2015 I SMOKED my time.

This run felt amazing. No knee pain, no crazy fatigue, lungs held up wonderfully. Only issue was my toe nail rubbed on something inside my shoe and I might loose the dang nail. But, hey! that's a normal runners issue.

I will again repeat myself in saying that for me there really is nothing that compares to running in terms of confident building, chest physiotherapy and an over-all sense of well being.

I think that having a "finish line" or end point pushes me. Unlike with CF, I continue day-in and day-out to accomplish treatments, medications, etc but there is no true finish line. There is no cure. This makes it extremely taxing to continue to carry on. In contrast, with running I've got a finish line that I'm striving for. Months and months of training yet at the end I get to experience the runners high of physically crossing the finish. Of seeing a goal come to a close.

This day I accomplished my 2nd ever Half Marathon. It's these types of accomplishments I want to remember when my health is ailing and my strength is weakening.


Monday, April 6, 2015

One Month Out: Great Strides

May is a huge month for raising funds for the Cystic Fibrosis Foundation. It's during this month that the CFF hosts its single largest event; Great Strides. Great Strides as it's so literally states is when the foundation takes it's great stride to help fund a cure. I know many think, "yup, another way to give over-paid executives more money in their pockets" but I can first hand tell you how completely untrue that is for this foundation.

Over the past 30 years, as I can only speak for those that I've lived, the foundation has been the sole organization to place research dollars in the appropriate hands to raise the average life expectancy from 12-15 years of age to 41. In 30 years. CF was taught in medical school as a childhood disease, because most often they didn't reach teenage years or adulthood.

In addition, to prolonging the life expectancy here's a lovely list of a few milestones:

  • 1982 The Foundation creates the Research Development Program, a network of research centers at leading universities and medical schools nationwide.
  • 1988 The Foundation launches the Cystic Fibrosis Services Pharmacy.
  • 1989 A team of Foundation-supported scientists discovers the defective CF gene and its protein product (CFTR), opening the door to understanding the disease at its most basic level.
  • 1990 CF researchers achieve “proof of concept” that gene therapy (in the lab dish) is possible.
  • 1993 Landmark gene therapy trial begins in people with CF.
  • 1993 The Food and Drug Administration (FDA) approves Pulmozyme®, which is proven to thin the tenacious, sticky mucus in the lungs and is the first drug developed specifically for CF. The time taken to develop Pulmozyme is less than half of the industry average.
  • 1997 The Foundation establishes the Therapeutics Development Program.
  • 1997 The FDA approves TOBI®, the first aerosolized antibiotic designed for CF, which is proven to reduce hospital stays and improve lung function.
  • 1998 Specialized clinical research centers are designated as the Foundation’s Therapeutics Development Network.
  • 2000 Cystic Fibrosis Foundation Therapeutics (CFFT), a nonprofit research affiliate of the Foundation, is established to govern drug discovery and development efforts.
  • 2000 Foundation-supported scientists map the entire genetic structure of the most common cause of CF lung infections — the Pseudomonas aeruginosa bacterium. Researchers can identify the function of specific genes and find ways to turn off the bad ones.
  • 2002 A Foundation-supported study shows azithromycin improves CF lung health.
  • 2003 Foundation-supported scientists at Structural GenomiX Inc., determine the three-dimensional structure of a portion of the CFTR protein, opening the door to more drug discovery opportunities.
  • 2004 Foundation-supported studies in Australia and at the University of North Carolina show that hypertonic saline helps clear CF mucus. It is proven to improve lung function and reduce hospital stays, and becomes a therapeutic option.
  • 2006 VX-770, an oral drug in development by Vertex Pharmaceuticals Inc., with support from the Foundation, enters clinical trials. VX-770 is one of the first compounds to attack the root cause of CF, and works at the cellular level to open chloride channels that do not function correctly in people with the disease.
  • 2007 Vertex selects a second potential drug, VX-809, for development. Like VX-770, VX-809 addresses the underlying cause of CF, but it works by helping the defective CF protein move to its proper place in the cell.
  • 2008 The Foundation and Vertex achieve a “proof of concept,” showing that it is possible to treat the root cause of CF. During Phase 2 studies of VX-770, trial participants, all of whom carry the G551D mutation of CF, show unprecedented improvements in key signs of the disease.
  • 2010 The FDA approves a new inhaled antibiotic, Cayston®(aztreonam for inhalation solution), to treat CF lung infections. Developed by Gilead Sciences Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent infections and develop resistance to existing antibiotics.
  • 2011 The Foundation announces that Phase 3 clinical trials of ivacaftor (formerly VX-770) showed profound results. Those receiving the drug demonstrated the highest increase on a lung function test seen in any clinical trial of a CF drug. Vertex submits a New Drug Application to the FDA for ivacaftor under the trade name Kalydeco™.
  • 2012 The FDA approves ivacaftor for people with the G551D mutation of CF ages 6 and older. The drug is the first to address the underlying cause of CF and opens exciting new doors to research and development that may lead to a cure for all people living with the disease.
  • 2013 Vertex begins two large international Phase 3 trials of ivacaftor in combination with lumacaftor (formerly VX-809) in people with two copies of the most common CF mutation, F508del.
  • 2014 The FDA approves ivacaftor as a single therapy to treat people ages 6 and older with one of eight additional rare CF mutations, and the drug continues to be evaluated in more patient groups.
  • 2014 Results from Phase 3 studies of ivacaftor in combination with lumacaftor showed significant improvement in lung function and other key measures of CF in people with two copies of the F508del mutation of CF, ages 12 and older. Vertex has submitted a New Drug Application to the FDA, with possible approval in 2015.
  • 2014 The Foundation maintains a robust pipeline of potential therapies that target the disease from every angle. The more drugs in the pipeline, the greater the odds of producing successful therapies and a cure for CF.

Pretty amazing accomplishments over the past 30 years. Over the next month I'd like to bring some knowledge about WHAT the foundation has actually accomplished with those donated funds.


Monday, March 30, 2015

Brushing Off the Cobwebs

This little place has a few cobwebs, geez! Funny how things get left behind as others start to nudge their way to the forefront. I do love this little place where my thoughts, feelings and heart can be laid out. Yet, there is so much in my life that I love and want to give my 100% towards, I just can't give 100% to everything all the time.

That being said, there are a few things that I must always devote my all to. My health, my marriage, and my family. My health must come before anything, because without it I can't function. I MUST keep up on my treatments, running and doctor visits. In addition my marriage is so very important to me. I work hard everyday to ensure that my spouse feels loved, secure, appreciated and wanted.

So many good things are in the works and I look forward to sharing all those amazing things with you all. God sure does work all things for our (my) good. It doesn't always feel that way, especially when we really really want something to go our way, on our timeline and with our desired outcome. However, that's not what is always best.

I can share with you that I will be doing another half marathon on April 12th. I feel very confident that I'll be healthy enough to participate. I've been training since the first of the year and finished the longest run in my training schedule this last Saturday (March 28th). I'm excited to get another half under my belt. I can't express just how much running has changed me. It helps me feel confident in areas of my life where I don't feel confident, it helps me take an active role in keeping my lungs clear of the mucus junk, gives me a healthy outlet, and soooo sooo much more.

My ever-so-sweet sister-in-law, Heather, has taken on the challenge for yet another year to head the Kari Doodlin' Great Strides Team. I'm a firm believer that support comes in many forms. She has chosen to support the funding a cure and she visits me when I'm in jail (hospital) with my ever do darling niece and nephew. I feel so grateful that she is the mother to my niece, nephew and wife to my brother. I also thankful we get along and feel enough love for each other to show our support. Thank you, Heather! I love you.

If you're interested in helping her help me you can make a tax-deductible donation here:
Team Kari Doodlin' Donation Page

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