My life has been crazy! I have been getting my extra 200 hours of school required by Oklahoma and it's been exhausting. I'm doing full time tues-sat 8:30-5pm, so by my day off I'm worn completely out. I usually suffer from headaches and feeling like crap for most of Sunday...but by Tuesday I have recovered enough to get back into the groove of class. I pretty much haven't learned ANYTHING at school. My instructor has not offered me any additional instruction. So I have been experimenting and using YouTube/Pinterest to teach myself some new cool things. :) I only have 5 more days of school...I'm down to my last week. I can't believe I have survived school again!!!! Here's some of my practice work I have done at work....
Save a Life...Be Someone's Hero... Be An Organ Donor!
It's days like today that make me relive the truth that Cystic Fibrosis is an incurable terminal disease...and it's those memories of special people who passed away that make me ask is CF a losing battle?
Today a young woman who just turned 20 on June 4th passed away...she was listed and waiting for a double lung & liver transplant. I never met her in person but we had many conversations about CF & transplant and life pre/post....
I cried today because it made me think of Susanne Noble who I became very good friends with...we had so much in common, I knew her before she went to Pittsburgh & received her double lung transplant...and we talked about life post transplant, for her it was not easy at all. She had so many set backs and her recovery was difficult...when she returned home her husband was not there to support her, my heart broke along with hers so many times. I felt her joy when she met a man that loved her and was there for her to the end...and that's what is hard...the end.
I cried today because it made me think of my CF friends who's funerals I sat through...knowing that it could be my funeral...knowing it will be my family who is suffering the sadness of my passing at a young age. I dealt with friends dying of CF when I was in grade school...and yet somehow I stayed optimistic and hopeful, determined CF wouldn't kill me.
I like the term "celebration of life" rather than "funeral services"...but that doesn't make it hurt less. The internet and social media has opened up the CF community world wide and I have friends from all over the country/world that share their life with me & it's a beautiful thing. It's a double edged sword though...the reality of how many young children and adults die from Cystic Fibrosis becomes so overwhelming and at the same time the stories of awesome people who are doing amazing things living with CF are inspiring.
My heart breaks for the families of my CF & transplant friends, it's days like today that I am reminded of the continued pain CF causes people...not just us that live with it but all that know us and love us and want to take our pain away. I KNOW how painful Cystic Fibrosis can be...I was there, I went to the edge and I barely survived. I saw and felt the pain my family and my husband experienced and to be honest...at the very end it didn't scare me anymore, to leave them, I was so sick and so tired I just wanted relief. I wanted my burden taken from me because I could no longer carry it. I knew my family was hurting for me but I wasn't in pain anymore...I had found that moment where I could be peaceful and allow my heart and soul to be peaceful. So I know my friends who have passed before me also found that peaceful moment & I take comfort in that.
So do I think it's a losing battle? Anything worth fighting for until my last breath will never be considered a loss. Some of the greatest men/women to walk the earth died fighting for something they believed in...something that they knew would make the future a better place. I believe that every day I live with CF and every day the medical world advances from the knowledge they gain adds hope that one day CF will be cured.
June 10th will mark my 6yr 6month post transplant mark! Last month my PFT's were down a little and my transplant doc was a little concerned...my FEV1 was 78% an 87% after albuteral.
They weren't down a lot & I assured him that it was due mainly to the recent move to Oklahoma and the extreme allergy season here. I had not ad jested to the change in my environment yet. So he had me repeat PFT's a month later.... My FEV1 is now 95%
These are my PFT's from yesterday :)
Needless to say he was "pleased" with my improvement. I started excercise 3+ times a week and started taking the occasional albuteral neb. I'm also pleased with my current lung functions. I'm so blessed.
LABS: ugh...I received a bill from the facility that I got my mandatory post transplant labs done and apparently MEDICARE denied coverage?! My portion as of right now is like $190.00. My doc wants me to repeat labs again but I cannot afford them of medicare stops covering them. I have contacted the lab billing, Medicare and my transplant center in hopes they'll figure out why this has suddenly become a problem. Stress is much harder for me to deal with now post transplant...so I'm really hoping it gets figured out.
I'm still waiting to hear back from the Oklahoma state license board regarding my nail license :( so in the mean time here are my most recent work of art...my own nails. Lol
I'm looking forward to summer...and going home to visit Idaho :)
*remember* Every day is a blessing ...every day is a miracle!
I have a workout blog...which I tend to neglect :( however I would like to blog today about fitness and how important I feel it is especially post transplant.
Before my transplant I was always VERY excercise concieous...in high school I took a physical ed credit EVERY semester (not kidding) I took aerobic classes, weight classes, aquatics and overall general PE classes. I credit my drive to stay in shape and workout to a fellow CYSTER Frannie Baumgartner- she holds track records at my high school & state weight lifting records. She was a marathon runner & she took caring for her health/CF seriously. I looked up to her ambitions and her dedication with much admiration. I however never set any records, but I felt her influence helped me find the drive to reach my on personal goals. I worked hard to maintain a healthy weight for my height. I maintained a weight of 95-98 lbs (I'm 4"11) and I did that with muscle building & eating a crap load of calories...not just junk food. I drank boost plus for extra calories if/when I needed them.
When I was 18 I became a Red Cross certified swim instructor in which I taught swim lessons for about a year. I had learned to enjoy working out at the gym and found satisfaction in running. I used to believe one could "out excercise CF" and by that I mean I had bought into the lie that if I exercised enough I would beat CF...
I believed that notion so much that when I heard of other cf patients becoming too sick to do simple daily activities I judged them a little in my head...'well if they had only tried harder' & I reassured myself that I would not be in that situation because I WAS SO ACTIVE. That is the lie I allowed myself to believe...I'm not saying excercise didn't add quantity and definitely quality of life for me, but in my naive thinking I thought I was surely saved from the damage CF was doing to my body.
Cystic Fibrosis is a disease. The lungs of a person with CF are diseased. That disease will continue to damage the organ and tissue....that is the nature of the disease. That being said, I believe that healthy and proactive decisions I made were an excellent tool I had control over to help me combat the effects and progressiveness of Cystic Fibrosis. I'm an optimistic person...and now post transplant I feel I'm not only optimistic but also realistic. That's is why I use the word "lie" when decribing the term/belief that excercise will allow me to beat CF. I lied to myself for years & I'm glad I did. I feel like in order to deal with a disease like CF I needed a healthy level of denial...it was my coping mechanism.
Speaking of healthy level of denial...there is a fine line. I was in denial for far too long. When I had to face the fact that I was dying & I only had less than a year...I stayed in my bubble of denial. I pushed my body beyond what it should have been capable to handle. When I finally accepted that I couldn't "excercise more & get my lungs healthy again" I had to face reality that Cystic Fibrosis had destroyed my lung tissue and it was not going to heal. By that time I was just months away from my last breath. When my lung functions were topping out at only 15% FEV1 I could no longer deny what CF had done. When I had to depend on oxygen supplement 24/7...I could not live in denial anymore.
I didn't become broken or discouraged...I call it denial but I also think of it as my hope. I had hope & I NEVER lost that. I had a gym membership at Golds Gym even when I was packing around oxygen. I walked the treadmill with my O2 slung over my shoulder...I walked to keep my body as strong as possible. I knew I would need it if I wanted any chance of a lung transplant.
It paid off...when I finally made it to my transplant center for my evaluation...I learned I only had 11% FEV1 I was on the max amount of portable oxygen. The pulmonary specialist performing my PFT's was surprised I was even walking...let alone able to pass the 6 minute walk comfortably. Staying active truly gave me the physical strength I needed. I was put on a ventilator just days afterwards...my lungs just could not function correctly any longer. I was listed the day I was put on the vent & 3 days later received new lungs.
Because I lived and experiences the positive effects on my health that exercise had on my life pre transplant...I've continued and I take it just as serious if not more...
I'm almost 6 years 6 months post transplant & I have not experienced rejection since my release from the hospital after my recovery...my lung functions have been stable at 88%-95% FEV1 and I maintain a weight of 107lbs effortlessly. I don't believe I'm doing so well post transplant because of the things I do. I believe my life/health is a blessing from GOD & I believe I'm very blessed. I also believe that we are responsible to do our part. So I do. I take my meds faithfully, I excercise regularly and I track my health very closely...all which contribute to my lungs staying healthy.
To sum up my thoughts...I believe excercise is a very important part of the treatment/management of CF & post transplant life. Be proactive...live in a healthy level of denial(hope) and don't underestimate the capabilities CF has to kick our butts despite our hard work. You're adding quality & quanity and never forget that...just remember what CF is. I felt like I had "failed" when I had to surrender to CF, in reality I had given myself an unknown amount of more time and life that I would not have had otherwise...with Cystic Fibrosis there is never failure & I had put such high expectations on myself that It caused me to feel like a failure, I have changed my perspective now...a lot. My high expectations only forced me to reach farther, work harder and live longer than I would have if I had not set them, but I now know I didn't fail anyone especially myself ;) CF isn't my "enemy" it's my partner in life and together we'll be the best ME I can be :)
Thank You for taking the time to read my blog. I am hoping that through this blog and my experiences that I can bring hope, faith and strength to all that may be living with Cystic Fibrosis, CF with Cepacia and Lung Transplant recipients. Information and blog entrees start Nov. 07. My Double Lung Transplant was on Dec. 10th 2007. Please feel free to read about my experience and ask me any questions! My email address is email@example.com
I have tried to get Bryan to post a 'guest' blog post here but with no success. He says no one would be interested in what he has to...
It's hard to put into words how I feel toward my Heavenly Father and the Savior. I have so many reasons to be thankful for what I have gone through & endured. Because of my trials in life I have gained a strong testimony of Faith. I have always had Faith in the Lord and in Prayer. As I faced the decision to get a double lung transplant I had to rely on faith to make the choice.....By listening to the spirit, I was guided to Pittsburgh where my life was saved. I believe prayers are answered. I have always tried to follow the philosophy of this: If I do what the Lord expects of me, he will give me what I want & need. That has always worked for me. I Believe in MIRACLES..........My life on this earth is a miracle- I prayed on my knees for years to be healed from my lung disease. I knew that through a priesthood blessing (if it was God's will) I could be healed. So many times I thought he would heal me instantly...my faith was tested as I continued to get sick and no cure was in my future. I turned to prayer....I talked to my Heavenly Father, I cried to him and he heard me and he healed me by guiding me to Pittsburgh and guiding the surgeons hands. I learned humility, and thankfulness. I realized that we need others to lean on and we are supposed to strengthen each others testimonies. I learned that the hardest things we'll do are usually the greatest blessings in our life. I was able to experience a lot of things during surgery and I know I had comforting angels in my ICU room. THe Lord knows each of us by name and he will never leave our side. We need to remember to stay close to him and have Faith that he is watching over us. I know this for a fact! I know that following the gospel will bring us true happiness- the world will tell us otherwise, but I know I am truely happy & living the gospel has brought me that. Amen