What's that thing on your chest???

Hi all! Sorry for the long time between posts..there really shouldn't be any excuse but I plan to sit down and write something and then get sidetracked. I will try to do better.

Anyway back to 2010. When I came home from the hospital in February, I still had the PICC line in my arm for TPN & medication infusions. A PICC is a peripherally inserted central catheter which means it's a line that's inserted through a vein in your arm and then threaded through to your heart with the tip resting on your superior vena cava. 

In May 2010, I went in for outpatient surgery to have a port-a-cath placed. A port is similar to a PICC but more permanent. One end has a septum which is surgically placed below the collar bone under the skin and again the the line is threaded through a vein into your heart. A needle is inserted into the septum, the other side has the end caps on which to hook TPN, chemo, take blood draws or other meds. When you remove the needle, all you see is a bump on the under the skin. I liked having the idea of a port so I could swim with the boys or shower without covering it up. 

Not long after I had the port inserted, Mike began taking care of accessing the cleaning, changing and accessing the port since my home health care was going to stop and I didn't want to go an infusion center to have them care for it. It took me 2 years before I finally got up the courage to learn how to access myself. I handle all of my line care now but make Mike refresh his memory every once in awhile. I do not use it for blood draws nor do I let anyone else handle it. Following sterile protocol, I have had only 1 infection in 4 years (fingers crossed).  

Infections can be hard to treat or deadly so it's important to watch for signs of fever, redness or if the line gets pulled out. There is no wrong type of line to choose for what works best for you.

So if you ever see my port sticking out of my shirt, you now all about the lifeline that keeps me living, loving and laughing!

Also, ThriveRx is having a webinar on Central Venous Line Care and Practice this Thursday May 29th at 1pm est. You can register through the website at www.thriverx.net . Even if you can't make it, register and a link will be sent to you to watch at your convenience.

Here's my port when it's unaccessed.

Here's what you see peaking out!

Short Bowel Diet??

One of my goals with this blog is to educate others with SBS on things that effect us differently. It didnt' take me long to realize how different foods affected me differently my initial surgery. At the time I only had inches of small bowel and everything literally flew through me. I couldn't make it through a meal without going to the bathroom at least twice. Certain foods went through faster like Coke and ice cream (those malts I craved were not doing me much good!). In the fall of 2011, I had a revision of my small bowel and jejunostomy which left me with about 2' of small bowle and an ileostomy (an ostomy further down the small bowel). Not long after this surgery, my surgeon started weaning me off TPN. After a visit each month, he would try dropping a bag to see how I would do. At the same time I started working with a Short Bowel Dietician at ThriveRx on what is the best foods to eat. Between this surgery and following the diet, I am able to stay off TPN.

ThriveRx offers Webinars for the Maximize Health! program specifically designed for patients with Short Bowel Syndrome. On Wednesday, May 14th at 1pm, there will be a webinar about "How to Thrive on a Short Bowel Syndrome Diet" by my dietician, Maria Karimbakas. If you would like to register for the webinar you can do so at the link below. Don't worry if the you can't make that time, just resgister and and copy of the webinar will be emailed to you to watch at your convenience.  


Also, Happy Mother's Day to all our mothers out there! We wouldn't be here without out you! Thanks for allowing us to Live, Love and Laugh!


https://www1.gotomeeting.com/register/495093472

A beatiful May Day and Flying Pigs...

Spring has finally arrived in Cincinnati! The first weekend of May is always the Flying Pig Marathon and a bunch of other events. In 2010, prior to my surgery I had registered to walk in the Flying Pig 1/2 marathon in May. After my surgery for the bowel obstruction and SBS. one of my first questions to my Surgeon was would I be able to get healthy enough to compete in the race in May. I know he thought I was crazy for asking but I had completed it in 2009 and loved it and was looking forward to participatig in the event again. 

In early 2009, my sister in Dallas had already commited to the race with some of our cousins and wanted me to walk with her for support in case she was not prepared enough for the race. I thought abou it and figured I was in decent enough shape and had time to alter my work-outs to include several long walks to prepare. By the time Kathy flew in for the weekend, our 70 year old Dad had decided to walk also. We had a great day and several othe cousins walked with us along wth the thousands of others that were registered for the 1/2 marathon.  

After my surgery, then a second surgery for a lung infection, I realized that there was no way I could do 13.1 miles in 2 months. Initially after coming home, I could barely walk to the end of my driveway without assitance so 13.1 hilly miles was way out of the question. My sister, father, friends and cousins had registered to walk with me. On Sunday May 2, Mike and I woke up early to head down and cheer our family, friends and other participants on as they walked in the rain. We saw them around the 9-10 mile walk and then again at the end. After the race I found out that they had formed "Team Mickey" and walked in my honor! I was speechless, they knew how much this race meant to me and I was just happy being healthy enough to cheer them on!

Team Mickey 2010

SInce then Team Mickey has walked 4 more times including this year. My father is now 75 and completed his last 1/2 marathon yesterday. He had hardly prepared at all for the race but was determined to see me at the finish line. He and Kathy finished in 4 hours 16minutes and they make all of us proud! I have never asked them to walk for me but am honored none-the-less. I did have a few minutes of jealousy at the packet pick-up and expo, knowing I would never be able to compete with them on that level again.

This year the original "Team Mickey" had a beatiful spring day and added my neice to the crew. All finished in great time and I couldn't be more proud of them! These special people support me in more ways than I can every express to keep me "Living,Loving & Laughing"!

Team Mickey 2014

Team Mickey 2014 along the race course and at the finish line!