Central Lines...a webinar with everything you need to know

If you've read my blog in the past, you know that I have a port-a-cath in my chest for my hydration infusions. I have been lucky to have kept the same port for 8 years with only one line infection (fingers crossed that I am not jinxing myself!). Most lines don't last nearly that long due to many different reasons. 

What is a port-a-cath you ask? It's a type of Central Venous Catheter or Central line which is like a permanent IV line that is used for medications, chemotherapy, blood draws and nutrition support. Types of Central lines include ports, tunneled lines such as Hickman or Groshong lines, and PICC lines. They can be placed in your arm or chest and are threaded through a large vein and which near your heart. 

Originally I had a PICC line when I left the hospital but knew I was going to get a more permanent line to infuse my TPN at home. A PICC line is inserted in your arm and is harder to care for by yourself since you only have 1 hand to use for cleaning and accessing the line so I knew that it wasn't the type of line I wanted for the long run. After consulting with my surgeon about types of lines and my lifestyle, we decided on placing a port. A port allows me to de-access it for swimming and bathing since the main part is under the skin. While on vacation during the summer, I will sometimes access/de-access it daily so I can swim and play in the water with our boys.  This was especially necessary when I first had SBS & TPN and our kids were 7,8 & 13. I still have to cover it up for showering or bathing so the line doesn't become wet. I do miss using the hot tub in the evenings with Mike after the boys went to bed because it was a good way to unwind and reflect on the day. With minor adjustment on how I do things and dress, my central line is not a hindrance to me but a lifesaver. 

Taking care of my line is very important so I only allow Mike or myself to access the line unless it's an emergency. Each week when I get my delivery from ThriveRx, I make up a line kit of things I need when accessing my port. It includes a central line dressing kit, a huber needle, alcohol swabs, Bio-Patches, Tegaderm, end caps and sterile gloves to fit Mike's hands. I also need saline & heparin flushes and curos caps to flush my line line before and after I infuse my fluids. Aquaguard & tape come in handy when I am taking a shower. 

If you are new to central lines or have questions about infection prevention, ThriveRx is hosting a webinar this Thursday April 12th @ 4pm EST titled "CVC Infections: Locking them up". Lloydette and Kristie, two of ThriveRx's Nurse Navigators, have tons of central line experience and can answer your questions after their presentation on signs of infection, ThriveRx's intervention program and the different types of line locks that are available. You can pre-register for the webinar at CVC Infections:Locking them up. Remember, if the time is not good for you, as long as you register a link to the recorded webinar will be emailed to you to watch at your leisure. Also, if you are a medical professional, this webinar will count toward your continuing education requirements.

As with all things in life, good things must come to an end so this spring I will be having my port replaced with a new one that I hope will last as long as the old one. As long as I can keep Living, Loving and Laughing with my Line, I am good to go.

Michelle

My Line Kit

Drinking makes all the difference....

Did you know that 80% of your body is made up of water? Our bodies can't function properly without replenishing the water we lose through digestion, breathing and sweating. While a normal person can replenish the missing fluids by eating and drinking foods with water, for a person with Short Bowel Person this is not so simple. Likewise a person with an ileostomy will not retain fluids because they are missing their colon which is the part of your body that absorbs the most fluids your body needs. 

I have always loved a good cold glass of water and used to drink lots of it before I had Short Bowel Syndrome but I would still suffer from problems with cramping. There were many nights I would wake up in the middle of the night with lower leg cramps that would make me jump out of bed to stretch them out. I would chalk them up to exercising. I never realized that since I was missing 90-95% of my large intestines that I was suffering from chronic dehydration. Since I have had SBS and went on & off TPN and now on life-long IV Hydration supplementation I am more aware of what my body needs and how it reacts to less fluids. Long term (chronic) dehydration can cause problems for your body such as headaches, fatigue, not peeing or feeling lightheaded. If you aren't flushing your kidneys out you can be more prone to kidney stones (if you've ever had one, you will never want one again!). Along with infusing IV hydration, I drink a salt mixture called Oral Rehydration Solution (ORS) that allows me to absorb more fluids in my small intestine. It's a daily effort I have to make to stay healthy and free of cramping & fatigue. 

ThriveRx has an upcoming webinar about dehydration called "Ask the Expert: Hydration Matters on Thursday March 8th at 1pm est.  You will learn the symptoms of dehydration and how ORS helps the body. You can register at this link: ThriveRx Hydration Matters

Keeping our bodies fluids and functions are important to keeping us Living, Loving and Laughing!

Michelle

(if link doesn't work you can always register here - ThriveRx

Rare Disease Day - Wednesday February 28th

#ShowYourRare

*Did you know that there are more than 6000 rare diseases in existence? 

*50% of rare diseases affect children? 

*1 person out of every 20 will live with a rare disease in their lifetime?

*Rare Disease day is celebrated on the last day of February each year. 

*80% of Rare Diseases have genetic origins while others are the result of infections, allergies or                                                                     environmental causes.

No one asks to have a rare disease, I know I didn't. My Crohn's isn't considered a rare disease because  more than 200,000 people in the US are diagnosed with the disease. According to Crohn's Colitis Foundation only 10,000 to 20,000 people in the US have Short Bowel Syndrome, there is no known cure but can effectively be treated. People suffering from one or more of the over 6000 Rare Diseases can have symptoms that vary by disease and by patient. With me the issues and treatments that work with my SBS vary greatly from others that I know. Me and my 79cm of small bowel are able to function without the assistance of TPN while still receiving IV Hydration and fluid supplementation. Others I know with about the same amount of small bowel need daily TPN or nothing at all to help absorb the nutrients we need to survive. 

A Rare Disease can be hard to diagnose and treat due the lack of experienced Physicians when they come across it. Delaying diagnosis can delay treatment which will can affect the patients quality of life. Once you have a diagnosis, finding the right care team can be hard due to physical location of patient to medical facilities, cost involved in treatment, family or monetary issues or a multitude of other reasons. 

Rare Disease day is a day to raise awareness of how the diseases impact the daily lives of those living with them. Raising awareness of the general public and more importantly, researchers, medical and health professionals reinforces the need to research cures to the many diseases. There are still many diseases that have no cure or medicine to help relieve the symptoms. Several of my co-workers and acquaintances are going to their state Capitols to meet with legislators to advocate for the cause. This is not just a day for awareness in the US but around the world as well. When you have doctors and researchers sharing knowledge and information, hopefully more cures or solutions can be found to cure or treat the symptoms of the may rare diseases. 

On this Rare Disease Day #ShowYourRare by posting yours or your loved one story and picture online at https://www.rarediseaseday.org/tell-your-story. change your Facebook or Twitter profiles to show you care. In a perfect world, the number of people with rare and incurable diseases would be diminishing but sadly that is not the case. For all of of those living, loving and laughing with a Rare Disease show you care today by #ShowYourRare.

Michelle

Statistics from www.rarediseaseday.org

Disabilities....some you can't see...

My sons have been involved with the local Special Olympics Ski team for the past dozen or so years.  Alex and his partner started skiing together when they were in 5th grade and stayed partners until they graduated from high school. It took Alex a year or so before he asked me what his partner's handicap was, he knew he was helping "handicapped" people but we never told him how each athlete was different from him. Some disabilities are more noticeable than others and it made me glad that Alex saw the other athletes as people and not for their disabilities. Daniel & Jake have also become Special Olympic Partners and eagerly look forward to Sunday night ski team training as well as the State Winter games in Cleveland. The whole family has become friends with athletes, parents and other partners that we see each year. The team is a huge family that cheers each other on and celebrates their accomplishments. 

No one wakes up one day and says "I want to be disabled today" it just happens, either you are born with it or an illness or accident changes your life forever. Some disabilities are noticeable while others are invisible. If you would have asked me 10 years ago what my life would look like right now, I would never in a million years tell you that I would disabled. When my health blew up, I resisted the idea of filing for disability until I tried to return to work and found actually didn't have the same body & stamina I had a few months prior. I look okay on the outside but the inside is completely different. Some days I feel like my old self but other days I am completely exhausted, dehydrated and need downtime to get through the day. Luckily I have a great part-time job with an understanding boss who allows me to adjust my hours for late mornings or mid-afternoon naps and a very understanding husband who doesn't complain if dinner isn't made or the house isn't immaculately clean. The hardest part about being declared disabled was drastic change in my life. Once my body healed enough to where I could start helping out at the kids schools, running errands and keeping up the house, I found that I really didn't fit in anywhere. All my friends from work were still working there and I was out of the loop, my other friends were working and I didn't know how to find new friends. I didn't know how to explain why I was no longer working and why I was disabled so people would understand that although I looked great on the outside, my body didn't work normally anymore.  It took a while but I found my place and and sense of self again. 

When you see someone out that has a handicap sticker, medical backpack or disability that sets them apart, remember that you can't always see their disability. It hurts when you are judged by others that have no idea what your life is like. When we became involved with Special Olympics I never realized how much it would teach my boys as well as how much the athletes have taught us. They show up  ready to ski with a smile on their face, kind works and an enjoyment for life. Living, Loving and Laughing comes naturally to them and they are an inspiration to everyone around them. 

Love to all,

Michelle

Welcome 2018 and.....Good Riddance 2017!

Happy New Year! I can't believe it's 2018 already  Time really flies as you grow older.  As I reflect on last year I want to apologize for my lack of blogging, it wasn't intentional. 2017 was one of those years I was ready to write off around mid-year. Every time I turned around I felt like I was being handed bad news about the passing of someone I knew and sub-consciously I just took a break from social media. I slowly stopped posting and checking Facebook and other social media sites that I use for support of my Crohn's and Short Bowel Syndrome. I think my mind knew that I needed a break from sad news (although it didn't stop sad things from happening) and wanted to protect me from a deep depression and focus on my boys and family.

When I reflect on those I lost last year there was a wide range of people from family, old friends, family friends and people I have through my advocating. Each death felt like a dagger in my heart. We lost Mike's mom, Lola, early in the year to a cancer diagnosis which took her much to quickly for us to comprehend. Lola was a second mother to me from before Mike and I got married. She was always there for me, Mike and the boys during my Crohn's flare-ups, surgeries and pregnancies. She showed me the love of Filipino culture, food and people. Her deep Catholic faith was inspiring and amazing, she always had a prayer and kind word. The whole family will always miss her.

Way back when when I worked for a health facility, I became friends with TC. She was the first person I knew with a port and it was a long time before I learned she suffered from lupus and was in kidney failure. She was needed dialysis several times a week and already a failed transplant. TC always had a smile on her face and you would never know what she suffered through on a daily basis because she NEVER complained about it. She is a shining example of how to smile through a chronic illness, this is what I from her and will always remember. While sitting outside with my mom not long after my hospitalizations in early 2010, she called me offering her support and love. She had understood what I went through and her smiling voice was a welcome comfort.

There were 2 deaths that really affected me because they both had Short Bowel Syndrome and I had become close to them through my advocacy work. J and his wife became friends of mine while I supported him for his SBS and TPN needs. He would always have something nice to say, was concerned about my health but didn't like to complain about his situation even at the very end. Life was tough for them since they lived in a rural area and didn't have much money, not many in their area understood what he was living with. He was the first person I knew with SBS that had passed away and it really bothered me.

Several years ago my ostomy nurse connected me with Mark. He had gone through an emergency surgery which resulted in SBS, TPN and an ostomy and was finally in a nursing home after an extended hospital stage. He was struggling with accepting his new body, TPN dealing with the ostomy and wanting to get strong enough to go home. We had many conversations on finding a "new normal" and learning how to live with the new way of life. Prior to his death, he had gone in for a bowel re-connection to get rid of his ostomy. I was able to see him while he was struggling with complications from surgery and he was hopeful that everything would turn out okay. At his funeral, his wife told me how much he thought of me and how our friendship had helped him accept and understand his new life.  It still amazes me that I can make an impact on someone's life, I don't go about life with this intent, I just don't want people to feel alone when dealing with Crohn's, SBS, TPN or when going through a major life change.

By August, I was done with sad news and happily watched my niece get married. The Bride and Groom were radiant and are overwhelmingly happy. Sadly less than 3 weeks later my mom called with news that my cousin Karen had not woken up that morning. Karen was more than a cousin, she was a friend. We were in a "Bunco" group that no longer played but instead enjoyed each others company. We enjoyed many lunches and dinners out, her infectious laughter and story telling always made for a good time. She was also the first of our cousins to pass away, her funeral was one of the largest I had ever been to. She had dedicated her life to working with the elderly, her husband and daughters and it showed by the amount of people who came to pay their respects.

As you can tell I really needed time for myself in 2017 and hope that 2018 is much nicer to everyone. I missed many opportunities to inform people of webinars, iv drug shortages, insurance changes and just what life is like living with SBS, IV hydration and an ostomy. I will miss Living, Loving and Laughing with all the ones that have passed on. In my view of Heaven, they are all well and good while Living, Loving and Laughing at and with us from above. In the words of Karen I am hoping 2018 is a "That's Good Stuff" year!

Mahal Kita to all,

Michelle

(Mahal Kita means "I love you" in the language of the Phillipines)

After a long absence - It's HPN Awareness time again!

Hi Everyone,

It's been a year since I've posted 😧 and for that I am sorry. Life had been busy with many things (good and bad) that have went on and blogging just wasn't at the top of my list. So I am going to use Home Parenteral Awareness Month to kick start my blogging again. Home Parenteral Nutrition is IV nutrition given intravenously to those who can't absorb food orally for one medical reason or another. The goal of HPN awareness week is to raise awareness and educate others on the need for HPN.

Most of my friends and associates know the back story of why I have Short Bowel Syndrome,  needed TPN for several years and now require long term IV hydration to avoid dehydration. But for those of you that don't I will give you the shortened version. In 1985 I was diagnosed with Crohn's Disease and over the next 25 years I had several flares resulting in surgeries that drastically reduced the amount of large bowel I had left to less than 10% but was able to function normally, raise our 3 wonderful sons with my husband of 25+ years, work full-time and enjoy a great life. For someone with a chronic disease such as mine, flares, obstructions, medications, hospitalizations and surgeries are some of the things that we deal with on a daily basis. By the end of 2009, I was experiencing periodic obstructions that would clear up in about 24 hours as well as other minor symptoms (fever, pain, etc) that I would ignore or blame on other things.  On a Wednesday morning in late January 2010 started out like any other but by lunchtime a blockage came on more quickly than any other I had experienced before. I went home and tried to gut it out on my own as usual but by the next morning I knew I had to call my GI and head to the hospital. I spent the next week with an NG tube down my throat, on pain meds and being tested to see if we could determine what was going on. On Saturday morning, the attending GI came in and advised me that I needed an PICC line and Total Parenteral Nutrition (TPN) because I was malnourished and wanted to "beef" me up for my upcoming surgery. My sister, Angie, was with me during visit the GI consult and my subsequent freak out about his recommendation. I knew very little about TPN, how it was infused, central lines much less living with it but I gave my consent figuring that after surgery I would no longer need it and could get back to my real life. Wednesday morning was the day of my scheduled surgery but I woke up with the worst pain and stomach distension of my life (including childbirth and kidney stones!). Two days later I woke up in the ICU with an jejunostomy, enteral feeds (tube feeds through my remaining small bowel) and Total Parenteral Nutrition for life. 

Over the past 7 years, I have been able to wean off TPN and stay off for 5 years but remain dependent on IV hydration because my remaining small bowel doesn't absorb enough fluids to keep me properly hydrated. My Crohn's is no longer in remission but is considered "mildly active" so I am on 2 medications to help keep it under control. My son's have grown from small children to teenagers and young men while Mike and I have celebrated 25+ years of marriage.  I enjoy spending time with my family and friends and reaching out to others who I can share my experiences with and make them feel less alone.  I no longer try to picture how Mike and the boys would survive without me but relish in the times we are together enjoying each others company. Without TPN, I might not have had the last 7 years to Live, Love and Laugh with all those around me.

Want a bracelet to show your support this week and all year? Send me a message and I will get one out to you! 

#TPNstrong #HPNawarenessweek #HPNAwareness

August is HPN & SBS Awareness month!

Hello Everyone,

I'm sorry that it has been so long since my last post, life got busy and I keep putting it off.  August is as good a time as any to write a post because it also happens to be Home Parenteral Nutrition (TPN) and Short Bowel Syndrome (SBS) Awareness Month.  Over 5 years ago if you had mentioned either of things needing awareness, my response would have been "Yeah, okay" and not bothered to ask to many questions. But since my diagnosis with SBS and need for TPN I have learned more than I wanted to about both topics. 

Short Bowel Syndrome is exactly what it sounds like. To be diagnosed with SBS, a person only has about 2/3rd of small intestine of a normal person. Most SBS'ers also have problems with malabsorption, diarrhea, hydration and fatigue. SBS is caused by many factors like birth defects, Crohn's Disease, injury, radiation enteritis after chemotherapy, surgery and blood clots. Since each part of the small bowel is responsible for absorbing different things the amount and area of small bowel a person has affects how much food and fluids they are able to absorb to live. Most people have about 600cm (about 20ft) that they are born with, I only have 79cm or 2.5ft. I am able to live without nutrition supplementation but require daily hydration infusions to avoid dehydration. I know of others that have the same about of small bowel and require daily TPN infusion to stay healthy.  Each one of us is different in all aspects of our lives and our intestines are no different.

Some people with SBS require the need for HPN or TPN (home or total parenteral nutrition) to provide the nutrition their body needs to live. TPN was created by Dr. Stanley Dudrick as a way to feed people intravenously when they are unable to eat naturally. Just like SBS there are many reasons for needing TPN such as congenital defects, gastroparesis, and mitochondrial disease. My first infusion of TPN was in the hospital was several days before my surgery that resulted in SBS, the GI wanted to “beef me up” before the surgery since I hadn’t been eating. Little did I know was that infusion would be the first of many in the hospital and then at home. On the first evening at home I received multiple boxes from ThriveRx which held all the supplies I needed for TPN and tube feeding infusions. Talk about overwhelming! Over six years later I am not longer on TPN but still require daily hydration that uses many of the same supplies that TPN does – pumps, tubing, saline flushes, port-a-cathater dressing changes etc.

So it’s fitting that SBS & TPN have the same Awareness Months since they go pretty much go hand in hand. In the 6+ years since I’ve had TPN, my life has changed dramatically. I went from fully healthy to deaths door and back to a “new normal”, I have watched my boys grow 6 years older and celebrate 25+ years of marriage with my husband (who is also my nurse on sometimes). Lately, I’ve been reflecting on my life and where it has gone, never would I have predicted that I would get a sick as I did, stop working and figure out who I was all over again. The end result is that I am happy with my life and where is headed. I interact with many people in similar situations and feel that I have made a difference in their lives. My work as an advocate for ThriveRx is more meaning full than any of my past jobs. SBS and TPN are not ideal ways to live but without both in my life, I would be as happy and content as I feel. Every day that I can Live, Love and Laugh with those I love around me or those that need to feel less alone is an awesome day for me!

@ThriveRx #SBS #SurvivingSBS

Check out the cool video the Oley Foundation has put together for HPN awareness week (I even know a few of of the people in it!)

https://youtu.be/Gj4yX3GBM10