Livin' With PH!!

Lovin’ My Life with PH By: Jessie Follett

When you are a little eight year old girl you have big dreams. Dreams of being a ballerina, a princess or a teacher. You don’t think about going to bed and never waking up again. You don’t think about leaving your family, friends and your favorite Cabbage Patch Kid doll. I did.
I was diagnosed with Primary Pulmonary Hypertension in 1988 as a scared little girl that instantly had to grow up. I cried for my mom to sleep with me in case I didn’t wake up. I took all the attention from my little sister who didn’t know what was wrong with her big sister and best friend. My parents divorced and everyone looked at me with those pity eyes. “That poor girl, she’s so young.”
I began calcium channel blockers to control my PH throughout my teenage years. I felt like an outcast all throughout school. I couldn’t participate in gym classes, sports or sometimes even slumber parties. I gained weight and used oxygen when I slept. I only had a couple friends that stood by me and cared. I never thought I fit in anywhere because thoughts of dying and never having a future were never far from my mind. Even though I went through a bad year or so of rebelling from my doctors and parents by smoking and not taking care of myself, I graduated high school with good grades and my PH was stable.
I became pregnant at age 20 and that was not good for my PH but I decided to have my beautiful daughter, against doctors advice. My PH doctor at the University of Michigan told me I would die if I continued with the pregnancy. I knew God had everything under control and I had a perfect pregnancy and delivery. I had a Right Heart Cath in place during the c-section delivery. Things were great PH wise until a year after Brianna was born. I couldn’t carry my daughter, walk to the bathroom or do anything without gasping and occasionally passing out. I was told to get my priorities straight because my health was failing. I was put on Flolan in 2003 and that changed my life.
The man of my dreams asked me to marry him. He knew of my PH and of the possibility that I might not have a long future, but he promised to make that future the greatest time of our lives. So far to date, he has kept that promise. My daughter is now ten years old and she is the greatest gift God has ever given me. She is sweet and caring and she loves to take care of me even when I tell her that I am the mom and I need to take care of her. She learned to mix my Flolan and she helps me with house work. I love her and my husband so much. I am truly blessed.
I am no longer that scared, frightened little girl. I am a strong confident young woman with dreams and goals for my future. I won the United States Bowling Congress (USBC) Women’s City Bowling Tournament in Muskegon, MI in 2009. I took home 6 trophy’s the night of our banquet, but above all I took home the greatest feeling anyone with Pulmonary Hypertension can have and that’s “Accomplishment“. The following year, 2010, I won first place at the USBC Michigan State Woman’s Tournament for handicap Singles 3rd Division. I even got featured in the Michigan Ten Pin flyer in which I brought light to PH and organ donation. Just because we have PH doesn’t mean we are destined to die. We are destined to LIVE!!
If you would have asked me years ago where I would be right now, I would have said “Dead.” Not today. Now I can say with confidence that my future is full. I am a wonderful mother to a beautiful, PH free daughter. I am a great wife to the most loving, amazing, and generous man I have ever met. I am the daughter to the greatest caregiver, friend and giving mother anyone could have. I am a wife, mother, daughter, bowler, knitter, scrap booker and friend. I am not PH!
I know my future is not guaranteed, but either is yours. I have good days, I have bad days, and I have days that I think, this is the end, but I never give up being me. Believing in my future and striving for more life is what keeps me going. P.S. A little Viagra helps, right!!!

My Kentucky Vacation

August 14-21, 2010, Joe, Michelle, John and I were in Louisville, Kentucky, or as you as it in Louisville, Looyval!! We had a fantastic time. Michelle and I are members of the Muskegon Eagles Auxiliary #668 Ritual and Drill team. We were in Kentucky to preform at the Fraternal Order of Eagles National Convention. Our whole team did a great job and came in 1st and 2ND!! While in Louisville we went to the Slugger Museum. It was great to see how bats are made and even watched them make bats for Derek Jeter! We even got mini souvenir bats to take home. The whole drill team also went on a lunch cruise on The Belle of Louisville, the last steam boat in use. It was a nice lunch and ride, but it was soooo hot! The 4 of us also went to Mega Caverns. It is a cavern under the city that was once used as a bomb shelter and we rode in a tram through it. The whole week Joe and I walked the town and visited with people from all over the country. It was great. Joe and I wanted to do something to remember the trip so we got tattoos. We found a cute little shop called 5 Star Tattoo Parlor and that was it! I got a ball of yarn and knitting needles on my right foot (I have wanted this forever!). Joe got Brianna's name down his arm. It looks so awesome. It was a little spontaneous, but it was fun! The last day we were there we went to Churchill Downs and I even bet on some video horse races. I only lost $5 but it was a fun experience. I am looking forward to our FOE convention next year in Orlando Florida. Joe and I spent so much quality time together that is was like a 2nd honeymoon!!!

Brianna's 10th Birthday

My baby will be 10 years old on June 14th. I can't believe it. We had a small party for her on sat. and all the family was there. Mom, Dad, Grandma and Grandpa Grow, Grandma Short, Grandma Kathy, Aunt Michelle, Aunt Jodi, Aunt Sherry, Paige, Blake, and Raven. Brianna is growing up so be such a wonderful, caring person. I hope God continues to bless her. She got spoiled this year with American Girl doll toddlers and stroller, clothes, Zhu-Zhu pets, and Webkinz. Brianna even picked out the Monkey on her cake and the lime green frosting! Happy Birthday baby!! Mom and Dad love you sooooo much!!!

Changing My Life

On this day of your life, Jessie, we believe God wants you to know ... that the greatest happiness in life is knowing that you are loved for who you are, and sometimes in spite of who you are.

This is what my "Message From God" facebook app said today. This touched me. I have been fighting a losing battle with my weight since I was 10 years old. I was a freshman in high school with a weight of 260. I have lost a lot of weight and gained a lot of weight in the last 15 years! I am the definition of a yo-yo dieter. My doctor told me in order to qualify for a lung transplant if it becomes necessary, I would have to lose 40 pounds. So I am on the journey to weight loss and a lifestyle change, AGAIN. This time it feels different. I want this to be my new life forever, not just another diet. I am eating a heart healthy diet, low in fat and plenty of lean protein, whole grains and veggies. I love The Biggest Loser cookbook. I am exercising several times per week. I know I will feel so much better once I get some weight off. But as the message above says that I am loved for who I am. Whether I succeed or fail, I am still loved. So wish me luck. I AM going to fight and win this war with yo-yo dieting. My life and health are at stake! Here is me in April 2010.

I am 245 pounds there. I have so far lost 5 pounds and will blog my efforts and losses monthly!!!

Gutter Guppies

This is my bowling team at Northway Lanes. My husband Joe and I plus our good friends Bob and Becky. We have been bowling together a couple years. We bowl on Sunday nights on the Mixed Up league. We have alot of fun with all the people and sometimes we actually bowl. My high game on that league is 220! I love doing things with my husband that we both enjoy. It allows us to spend time together and have fun. I love our name "Gutter Guppies" because it fits us. At least once a game one of us, mostly me and Becky, are in the gutter! Hopfully we continue to bowl together for years to come!!

My Hickman

This is my Hickman Central line. As of today I have had 4 in the last 8 years. The others were taken out due to infection. They are not too painful to put in, it's the healing time that is painful. Once in, I can't feel it and I live life as normal as I can. I clean the site a couple times a week with a cloraprep dressing kit. I change my lines on a biweekly basis also. My loop under the Tegaderm dressing is to prevent pulling the line out in case I pull on it. I am not suppose to get it wet but with showers it's impossible to not get it wet. On occasion I get a site infection with redness, pain and puss but those go away with antibiotics. I sometimes ketch my lines on everything like chairs, the dog, bowling balls, tables, my own body... It's become a comedy act at home, as my daughter and hubby lovingly call it my leash. All my friends and family are even cautious with me and my pump. I even sometimes go swimming in a pool with my husband holding my pump while I swim and doggy paddle around the pool. The pump is not allowed to get wet so swimming is a no no. I never follow rules! LOL I am not going to let a tube in my chest and a battery powered pump on my hip run my life. I am thankful that the medicine inside the pump has given me my life back, but it doesn't hold me back from being a good mom and wife!

Spinning Yarn

Ok, I know I am only 30, but I recently sent away for my first drop spindle. The idea of creating my own yarn is something I have wanted to do since I began knitting 3 years ago. Believe me when I say that it's not just old people knitting anymore!! One day I decided to pick up a "Teach yourself to knit" book and that was it, I was hooked! I have knitted hats, mittens, scarves, American Girl Doll outfits, socks, bags and ipod cases. I also crochet. My Grandma Grow taught me when I was 10 years old and now that she is gone, I feel close to her through crochet. I am hoping one day to teach Brianna how to knit and crochet. Here is my first ply of colored Merino that I bought off Etsy.com from a Michigan Sheep farm. It is so soft and easy to spin so far. I am a park and draft spinner. I learned from many youtube.com videos. I am planing to make a pair of soft socks with this yarn. Wish me luck. It might take me a long time to finish because of the big move coming up and all the packing work that needs done.

Buying a New House!!!!

Joe and I went and signed all the loan papers today! We are buying my first house and I am sooo excited. I got frustrated at first because we looked at so many houses and didn't like them. God just wanted to wait for the perfect one! Here are a couple pics of our new house. We should be closing on June 7th!! It's kinda overwhelming to think about cleaning, packing, moving, changing address, mailings and all my medicine providers. It's exciting at the same time. I am glad Brianna will be at the same school. We are going to be sooo happy in our new home!! It is move in ready. New carpet, paint, appliances and sinks. The driveway is freshly poured and the landscaping is all new. I even love the small plum tree in the frount yard. Off the dining room is french doors that lead out to a nice deck and large back yard.! HOME SWEET HOME!!

Flolan IV Medication

Flolan is a medication that runs through my central line into my blood stream 24/7. I have been on Flolan since Jan. 22, 2002. It's a difficult life to be connected to a tube and pump all the time. No swimming or rough activities. Changing cassettes, mixing the med, dressing changes, line changes, infections, batteries, tubes, etc. blah, blah, blah,! I don't let it get me down. This medication has saved my life. Before Flolan I couldn't do anything and now my life is almost normal. I bowl weekly in 2 leagues, I knit, shop, ride my bike, and do whatever I enjoy. I am not letting Pulmonary Hypertension run my life. This is a blog of LIVING with PH, not dying with PH!!!