Summer 2019 & the Oley Conference

Hi all, I hope everyone has been having a wonderful summer and staying cool! I can't remember the summer being so hot so early since before I my struggles with Short Bowel and dehydration began.  We started the summer with an extended  vacation to Orlando and Gulf Shores, AL for work and pleasure. Spending time with family in both places was always wonderful for me. Mike had a conference in Orlando so me and 2 of our boys tagged along before the 6th annual family vacation in Gulf Shores. I must say it was hot in both places so I made sure I stayed hydrated by infusing regularly as well as drinking my ORS daily. My days of basking in the sun all day aren't what they used to be when you have to worry about staying hydrated, medicines that cause cancer as well as  sun-damage to your skin. Nothing  can compare to relaxing at a gorgeous beach, watching Blue Angels practice overhead or playing with my 2 year old niece (and older nieces and nephews too).  Relaxing and spending time with the important people in my life are what keep me grounded and thankful. 

I had about a week recovery before heading to Memphis for the annual Oley Conference  with ThriveRx at the end of June. It had been several years since the last time I attended one so it was great to catch up with old friends and meet new consumers and caregivers. Per their website, "The Oley Foundation is a national, independent, non-profit 501(c)(3) organization that strives to enrich the lives of patients dependent on home intravenous nutrition (parenteral) and tube feeding (enteral) through education, advocacy, and networking. The Foundation also serves as a resource for consumer’s families, clinicians and industry representatives, and other interested parties." Their conferences are packed with Researchers, Physicians, Registered Dietitians, consumers and caregiver who offer incite in what it's like to live with nutrition support and the best ways to treat it. My job duties this year included manning the Hydration Station with Maria Karimbakas RD & Kristie Brewton RN to teach nutritionally challenged people the signs and symptoms of dehydration and to sample 2 different types of ORS. This year we had the standard G2 with salt and  Trioral ORS with different flavors each day. The WHO recipe for G2 is 1/2 tsp salt per quart of fluid. You can mix Trioral with 1L of water and flavor to you preference. Since beginning hydration therapy, I have always used ORS from Jianas Brothers mixed with Propel water which I freeze to make it more palatable and longer-lasting on hot days. I could always taste a bit of salt with the Jianas product but I am now a fan of the Trioral packets. There was less salt taste with Trioral even when I freeze it. I am not a huge fan of Gatorade or G2 but will drink it if I have too and I prefer my Hamilton water over anything if I could drink it straight. Drinking plain water is not the best thing for my SBS and hydration issues so I have to supplement it with ORS. I brought several sample packets of the Trioral home and will plan on buying them in the future when my supply of them and the Jianas products runs out. Since I am a regular consumer of ORS, my job was to have patients and caregivers try the products to see which one they preferred and if they could taste the salt (for those with regular guts). It was surprising to see how many caregivers also tasted less salt in the Trioral product. 

ThriveRx also hosted an event for our consumers at the Memphis Redbirds ballgame Sunday afternoon where I re-connected with consumers and met many caregivers and patients with whom I have spoken with on the phone. In my current position with ThriveRx, I work with the Reimbursement department and consumers on insurance issues. I no longer speak with regular consumers but many different ones over the course of the month so it was nice to put a face to name. 

The Oley Conference is always informative and enjoyable. I am looking forward to their Regional Conference on September 15th in Columbus, Ohio.They are also hosting one in Boston in October. It's always a pleasure to connect with others just like me who are Living, Loving and Laughing through their nutritional issues. 

Love to all,

Michelle

PS: I've tried to add links to ORS recipes, Trioral, Jianas Brothers and Oley regional conferences so if they don't work let me know. 

Stephanie, Ann, Redbird and me

Me & Kristie

The Advocate Staff

The time I tried to get a new port....

When it comes to our healthcare it's never a bad a idea to be pro-active and take care of things before something goes bad. That's what my doctor and I were trying to do when we decided to pull my 8 year old port and replace it with a fancy new dual lumen one. Nothing is wrong with the port itself but the skin over it has become very thin and bruised from constant access and also has some scar tissue built up behind it. Over the past year or so I have mentioned it to my surgeon and we decided on putting in a dual lumen one. A dual lumen means there is 2 access spots for the needle to be inserted. The idea being I could alternate sides so skin could heal up between uses and avoid the thin bruised skin I know have. My plan was to have it done before summer started so the incisions would be healed up before the hot weather hit.

Well you know what happens about the best laid plans right? They go awry....which is exactly what happened, sort of. In early May, Mike and I went to the outpatient surgical center to have the ports switched out. All went well until I woke up and found out that instead of 1 port I know had 2! My trusty 8 year old one refused to come out! Although I knew I was getting a dual lumen port, I never really thought about how much bigger it would actually be. My old one is about 3/4" round and my new one is about 1.5 times that and rectangular. I can really feel it when I am laying on my right side. My surgeon places ports but his specialty is Colo-Rectal surgery not Cardio-Thoracic and he didn't feel comfortable yanking very hard to remove the hold port so he left it in and referred me to a Cardio-Thoracic surgeon to see what her recommendations are. I had a rough next several days because both side of my chest were sore, bruised and swollen from having work on them. Luckily both ports work so I could continue to use the old one while the new site healed as it was more bruised and swollen. We waited about 10 days to access the new port, it felt like Mike got the right spot and got blood return which is usually a good sign. I did feel some burning while flushing with saline but decided to hook up anyway, I thought the burning was from still being bruised and sore. After about 45 minutes I noticed that my shoulder was getting stiff and swollen so I stopped my pump and decided to stop flush and cap the line. I did call my nurse, texted my doctor and called my Nurse Practitioner brother-in-law who deals with ports to discuss my concerns. I already had an appointment with the specialist set up for 10 days later so we decided to wait until after then to access the port. 

We saw the new surgeon last week and she showed us exactly what the new port looked like and where the access spots are. She will try to remove the old port when we are more comfortable accessing the new one and we are ready to have the old one removed.  After several nights of trying and using different needle lengths, I was finally able to access the new port and use it successfully. I think for now I am going to access it myself since I feel more comfortable "feeling" around under the skin for the right spot to hit and give my faithful nurse/husband a break. I've added some pictures below of what the sites looked like the day after the surgery and the bruising several days later.

In time, I know that my new port will work and feel just fine once we get over the learning  curve of accessing it. In my mind, I thought every thing would be very easy and we wouldn't have problems getting old one out or accessing the new ones so I wasn't ready for both things to happen. I know I am very lucky to have had my old trusty line for 8 years because there are many that struggle with line infections and have them for really short periods of time. As long as they work with no infection, I can keep Living, Loving and Laughing while I am hydrating! 

Love to all,

Michelle

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)