Central Line infection #1 2015

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 the chores done just in case I have to travel the 3 hours to the hospital in the morning.  That is something all PH'er do in times like these.  I might even pack a bag tonight just to be safe too. It takes time to pack all my medications, dressing kits, clothes and things to do while sitting in a hospital bed for a week.  Then I will have to get my mom to watch my daughter and my animals. PH is more than a disease. It is a life changer, a tumor on my life. I can't do anything without the tumor rearing its ugly face!  

Please say a prayer for me and my family are I am going through is rough time. I appreciate every one of them.   

The year of loss

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.

Winter 2014-2015

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 house and doing more things. I am enjoy driving my daughter to and from dance and softball practices. I am working on getting more exercise because I put on 12 pounds over the winter.  I believe winters in the north are especially hard on people with breathing and heart issues.  The cold air makes it hard for me to breath and the snow makes walking more difficult too.  

My PH is not the worst so I did managed to bowl pretty good all winter on my leagues. A couple weeks ago I got this great new bowling ball and a new pair of shoes.  I am already bowling better.  I even beat my hubby a couple times! Here's proof!!! LOL 

Spring is opening my heart and mind with the flowers. I am getting out of my funk. I hope everyone else is getting out to smell the flowers and see that there is always a light at the end of the tunnel!

Here are so knitting projects I finished over the winter. Knitting is my passion and I love it. It makes me feel like even though I can't work or make money outside the home due to my illness, I am still giving something of myself to the world that I create with my hands.

PH happens again!

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 and the PICC line really take it out of me physically and mentally. By day 3 in the hospital I get emotional and moody with the doctors. I want to go home! After 5 days they pulled my central line, started iv antibiotics got the infection under control and I got to go home doing the iv antibiotics through my PICC line 3 times a day.

It has taken some time to get my mojo back. I have been home a few days and I am starting to finally feel like my self. It is in these moments of sickness that I realize that PH is never going away. I will continue to be sick the rest of my life. But I will continue to cruise through my life enjoying these amazing experiences with my family and loved ones regardless of my illness because PH is not me. Yea, there will be time of sickness and stress, but I have to stay strong and know that God will keep pulling me through as he did last week. Each set back is a learning experience, a step to grow as a person.

Thanks to all my friends and family who sent me messages of encouragement and prayers. They really made a difference to me. That support helps pull me through.

Now, I am off on my next adventure. Catching up on house work, and picking up my teenager from school. I absolutely love my life!!

My Spinning Wheel

 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. They 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 apocalyptic skill to have too!! (As my hubby points out, LOL). I can spin yard for everything to knitting socks, sweaters, rugs, and maybe the occasional gun slung or a rope to tie up zombies!!  Spinning is a wonderful stress reliever and I have a wonderful feeling of accomplishment when I am knitting with yarn that I have created with my own hand, made from sheep I watched get shorn. I hope everyone has something special in their lives that is fulfilling and enjoyable and fills you with life and passion!  

     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 dizzy or passing out.  I felt like shit!  I felt like my time was short and I was depressed and cried a lot. 
    3 Months on Flolan and I could walk around a store. I lost 40 pounds because of the terrible diarrhea, a side effect of Flolan.  I didn't mind the side effects because I was getting my life back.  I started to look up and God was helping me get through it.  I could be a better mom to my baby and my boyfriend Joe asked my to marry him! 
   Sure it took a long time to get back to "normal". I started Revatio and Letairis over the past 5 years and switched to Veletri in 2009.  It has not been easy but it has been worth it.  I wouldn't change anything to see my beautiful daughter grow into a woman and to be supported and loved by the greatest man I know.  Over the years I have went through periods of depression and several central line infects that hospitalized me, but nothing keeps me down. I know God has great plans for me.  As long as we fight through the bad times and love and appreciate everything we go through whether it's good or bad,  we will see the wonderful life God has given us.  
    So here is to another 12 years, and more, with a tube in my chest as long as I can continue to breath easy, love hard and live each day to the fullest.  

My first Tigers Game!!!!!

On 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!!