Livin' My Life With PH!!

Day #1 I am going to blog everyday of my infection. By infection I mean in my central line in my left chest used to administer my Veletri medication used to control my PH 24/7.  At the end of April my central line began to get red and sore so I had my PH specialist look at it.  She cultured the site and had me begin taking oral antibiotics.  After 2 weeks of the antibiotics the site showed no change and began oozing puss and aching.  So tomorrow morning I am calling my PH specialist and she will admit me to the U of M hospital for IV antibiotics and a series of blood and site cultures. We will rule out a blood infection (I hope!).  If there is a blood infection that means pulling the infected line and getting a PICC line inserted so I can continue getting my Veletri medication. But enough of that talk, I will not get ahead of myself and I will calm my nerves. It is all in God's hands.  I am taking a long bath to relax tonight.  House is clean and t...

This has been a year of terrible loss for my family. I lost my Uncle John Short in June of 2014 to a tragic logging accident and May 12 I loss my Uncle Richard Grow to a heart attack.  These losses are hard on me because it makes me think of my own mortality. According to the doctors I should already be dead. My PH should have killed me years ago. I am glad that God has his own plan for my life. He had his own plans for both my Uncles too. I don't need to feel guilty for being alive. I just have to live my life to the fullest and enjoy everything. I need to stop and smell the spring flowers, enjoy spending time with everyone I love and be the best person I can. I need to share memories of those I have lost and love the time I have left on this earth.

This is a winter update from me. It was not a good winter for me.  I dealt with a line infection, IV antibiotics at home, and a new central line placement all before Christmas.  I then became sick with a cold/bronchitis which took me out of commission for he month of January.   I managed to help my hubby put up Christmas lights because there was no snow in December. It was a great time with family and friends. My bowling team had a little party, then we had parties with my Mom and then Dad's. I always love spending time with all my family. We also had a cookie making parting at the church with all the grandkids. It was special. It was also the first Christmas without my Uncle John. It was sad. His loss has rocked our family hard. We got record breaking snowfalls and cold temperatures which all but home bounded me until the end of February.  Now that March is here I am feeling great. I am getting out of the hou...

I was cruising along in life happy, healthy (for me) and enjoying my experiences that made me forget I have a chronic, incurable disease called Pulmonary Hypertension when BAM, the doctor said line infection and sepsis! I have had my current line in my chest since 2011. I have been having amazing hall walks and echoes that resulted from lower pressures than in the past. I began to feel like I wasn't sick. That was until a few weeks ago when I spiked a fever and went to the hospital. After lots of blood work and blood cultures that came back negative, I was told I had a tunnel infection in my central line. I did oral antibiotics for a couple weeks. The infection seemed gone. Then it flared up last week with high temps and pain in my site with drainage and redness. I knew what it meant. My wonderful husband drove me to U of M hospital 3 hours from home and I was admitted. The whole thing was traumatic even though I have been on Veletri 12 years. The ivs, blood draws, cultures ...

  I want to introduce you to my Spinning Wheel. I got it February 2013. I have got to play with it for almost a year.  I love it!!  It is an Ashford Kiwi. I purchased it through The Woolery . T hey have great customer service.   It came with a lot of different pieces to put together.  I decided to stain my wheel with Mins Wax in a natural color.  I let that dry for a day the then my hubby helped me put it together.  I got a Jumbo flyer kit with my wheel and 2 pounds of wonderful fiber.    Assembled!! This is my first attempt at spinning a 2 ply. It is 100% Alpaca. It was so soft and yummy!! Spinning while watching TV. It is very nice after a long day to just unwind and spin away the day. Falkland fiber.     Here is the Alpaca washed. It fluffed up! I really enjoy the feeling of slowing down and doing something my ancestors did centuries ago. It is a wonderful a...

     I know that I have not posted in more than a year.  My life has been wonderful and full of living.  I have been enjoying my family, bowling, knitting and riding our motorcycle with the hubby.  I decided to post today because it is my 12 year anniversary of going on my IV medication, Flolan and then Veletri for my PH.  It has saved my life.        I had my Hickman central line placed on January 22, 2002. I started Flolan in the hospital at the  University Of Michigan in Ann Arbor, MI. I was admitted in the hospital for 5 days as my doctor increased the Flolan to a therapeutic dose.  It was the most frightening experience ever.       I was 23 years old, I had a 19 month old daughter and a boyfriend of a year.  I was told to get my affairs with my daughter and my life in order because my PH was so severe.  I was so sick that I was blue all the time, I couldn't walk around with out getting dizz...

O n May 5, 2012 Brianna, Joe and I took a family vacation for the weekend to Detroit, Michigan.  Since our 9 year anniversary is on May 10th and Joe's birthday is on May 13 we combined everything into this fantastic weekend!  We got to see the awesome Detroit Tigers play the Chicago White Sox.  Even though the Tigers lost the game, it was one of the best family vacations we have ever taken as a family.  We stayed in a hotel with a pool and went swimming.  We went shopping at a 3 story tall mall that had a cool fountain and large art everywhere.  I love any activity that lets me spend more time with the 2 people in this world that I love the most!!

I haven't knitted for awhile but Joann's had a sale on sock yarn that I loved! I am taking these slow but they look great in the Cheveron pattern. Knitting is so relaxing!

I love my dog. Our family adopted her from the human society.  She is an awesome dog. She is 8 years young!

     Even though I have lived my entire life with a chronic disease I have a life worth living.  Growing up I was "the sick girl" or the "girl who can't do anything".  I felt like I was nothing but a girl that was sick and going to die without anyone remembering anything else about me.  I was tubes, pills, doctors, bills. I had a poor prognosis.  I felt like a lab rat.  I was depressed and scared all the time.  I thought about dying all the time.  I felt alone. That is all in the past.      I am more self confident than ever now.  I am a mother, a wife, a daughter, a sister.  I am a knitter, a scrap-booker, a bowler, a sports fan.  I am strong and stubborn.  I am happy, loving and spontaneous.  I have won trophies and awards.  I am in love and loved.  I am beautiful and amazing.  Everyday I amaze myself even if I never get out of my pj's.  Although I am still sick, I am AL...

I tried to stand my broom up and it worked! Simple minds are easily entertained!

Aghhhhhhh!!!! I bowled like shit all weekend. The best part of the trip to Canton, MI was my spending time with my hubby. The lanes were awful and the hotel was small. We went with 2 teams of great women and had fun. We went to the MGM Grand Casino in Detroit together and bowled like crap as a team! Go Muskegon!!! We stopped at a knitting shop that I loved! I went to Ann Arbor to see Dr. McLaughlin my PH doctor. I did fantastic on my 6 minute walk. I did 543 meters! We are going to switch me to Veletri from the Flolan. It's basically the same medication just doesn't need ice and I can mix up to 5 days at once. I am excited after 9 years of mixing my Flolan every single day! I am sooo sick of it! I am ready for spring!!! My mom and I are walking a few times a week and the snow is melting! Life is good!

The next month is sooooo busy. I am bowling in the Michigan State tournament in Canton, Mi and the weekend following that tournament I am bowling the Muskegon Tournament. I am excited. I am also doing fantastic at my weight loss goals. I am down a few more pounds this week after being back on plan 100%. I got the PICC line out and my new Hickman cath put in. It's weird having it in the right side but I am adjusting. Right now life is fantastic!!!

I got my 5th hickman central line on Monday. The infection is gone and things are back to normal, at least for me. I am hitting the treadmill big time since summer is just around the corner. I can't wait to go to Florida with the Eagle's drill team.

After a 3 month hiatus from Weight Watchers I have decided to join again with the PointsPlus program. It's a little different than the other program that WW had but I like that all fruit is free. I am still down 23 pounds from July which in great! I have been going through alot the last 3 weeks. I have an infection in my central line's tunnel and regular antibiotics didn't work so I now have a PICC line in my right arm that I have to run IV antibiotics through twice a day. It's not good for weight loss as I am finding out. I started WW 2 weeks ago and haven't lost a pound. I am not sweating it. I should be done with this therapy soon. It's a royal pain to shower but otherwise it's not too bad. I have been through worse. I have been bowling great with the PICC line, which is great too. I have been really happy lately even with the medical issues. I am looking forward to my Florida trip with the Eagles Drill team that is in July. I w...

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...

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 rememb...

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!!!

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 f...

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!!