Wednesday, April 27, 2016

Endoscopy and Tube Change

Herman II is no more! Please give a warm welcome to Herman III. I tried to rename him, I really did, but somehow after more than a year of calling my tube Herman, I'm just not able to change. So Herman he will remain.

So yes, I had a tube change yesterday as well as an endoscopy where they took some biopsies to see how the Xolair is working as well as doing an endoscopic ultrasound. It was a busy morning! At least it was for my doctors =P I was out!

I was really nervous going in. There were so many moving pieces, and this was my first procedure done at the Clinic so I really had no idea going in what to expect. My previous GI had sent all my records ahead of time but there was some miscommunication and it didn't appear that the doctors had seen anything before yesterday. When we got there, the doctors weren't even clear exactly what procedures I was having done...yeah, that didn't make me feel more comfortable!

However, what did help me stay calm was talking with each of the doctors, the anesthesiologist, and the nurses prior to the procedures. Knowing exactly what was going to happen and being able to ask questions and confirm what I had been told before let me take a breath before they took me back.

One thing I was especially nervous about was the anesthesia. I have had multiple severe reactions to conscious sedation, so I have to go under full general anesthesia...and I still had some issues with that when I had my first PEG-J placed a year ago. Thankfully, the anesthesiologist yesterday listened to my concerns about the reactions I had in the past, read over the notes from my previous GI about the issues I had during the tube placement last year, and offered a few suggestions and asked questions. He was very professional and seemed comfortable handling my case even knowing the potential for issues. Just before they put me under, he assured me that they had epi ready, more benadryl available, and breathing treatments on hand for any issues. Not saying the thought of them needing that was comforting, but the fact that he took an extra moment to reassure me was.

I did take a while to wake up. That is pretty typical for me, so it wasn't a huge surprise, but apparently the nurses in recovery weren't informed of that so they were a bit worried. I was told that I had some dry heaving and breathing issues as I was waking up so they gave me some nausea medication and a breathing treatment, but I actually don't remember any of that. What I do remember is when they brought Nick back and Leni jumped up in bed with me to snuggle. I have to say, I've had a bunch of procedures, and waking up to Leni is probably my favorite way to wake up!

If anyone with a service dog is reading this and curious about how it working having her with me, here's what we did. Leni was able to be with me in the admitting area and prep room before my procedure. My husband was with me, too. Always ask if whoever you brought with you can come back because usually there is a good wait before you actually go back for the procedure and it is nice to have someone with you. Nick and I did some Mad Libs which gave me the chance to laugh and keep my mind off being nervous. I highly recommend some form of distraction =P

Leni could not stay with me during the procedure. That room is considered sterile, so the hospital is allowed to deny Leni access to that area even as a service dog. She stayed with Nick in the waiting area during my procedure. He took her out for a walk and to go to the bathroom, but for the most part, she just curled up under his chair. In recovery they typically don't call whoever you brought with you until you are at least somewhat awake and aware. Once they could tell I was starting to wake up, they brought Nick back and Leni came too. Like I said, waking up to my snuggly girl is probably my favorite way to wake up! I've had her with me at multiple different ERs, hospitals, doctors offices, blood labs, etc. and never had any access issues and the nurses always seem to love her.

Once I woke up a bit more and was able to communicate and at least open one eye at a time (I was seeing double and extremely dizzy for quite a while), they cleared me to go home. I continued to recover last night, slept well last night, and am doing pretty good this morning. Two thumbs up for Cleveland Clinic and their care and management of everything for me yesterday!

So what actually happened during the procedure?

Well, I now have Herman III! In the words of Shakespeare, "Parting is such sweet sorrow." Yes, as much as Herman II and I had been through together, it was time. I think I was starting to grow my own species of mold in Herman II plus my once clear tube was now a beautiful green/brown camo yes, we bid farewell to Herman II and gladly welcomed Herman III as his successor. Herman III is very similar to what I had before with a few differences. He is considerably longer than Herman II which so far has only proven to be a slight inconvenience with 2 dogs that enjoy cuddling me getting more active; however, I'm sure I'll get used to it. The tubing is from a different company, but other than that, it's pretty much what I had before. They were even able to keep the color-coded tube caps (yellow for my J tube, red for my G tube) so I don't get them mixed up!

I also had an endoscopic ultrasound where they put a probe down and were able to use sound waves to gather information about the lining of my stomach and small intestines as well as looking at my pancreas. My stomach and intestinal wall looked normal which was good. That means that despite my motility issues, it doesn't appear that any structural changes are contributing to that. There were some abnormalities noted throughout my pancreas, so I will be following up with my GI and endocrinologist to discuss what that means.

The last thing they did was to take multiple biopsies throughout my stomach and intestines. I have had these done before which were part of my mast cell diagnosis. In theory, we should see some changes in the mast cell staining since I am seeing improvement with Xolair, but we'll just have to wait and see.

I know I finish almost every post with this, but THANK YOU. I mean that every time I say it. I was very nervous about this procedure. Yet, somehow (prayfully) I was able to let go of my fear and go in calmly and at peace. I much prefer being on the giving end of prayers and serving, and it is humbling to be in this position for such a long time. During this season of life, though, I am learning to receive graciously whether prayers or help or time. That has been and is a hard lesson, but it is also making me more aware of what it is like for those that I have given to. I hope that as I am thanking you in practically every post that my sincere appreciation and gratitude is coming through. It is not just something I am saying because I'm expected to. I truly see and feel your prayers carrying me through every step of this. I hope that you are encouraged hearing how your prayers are lifting us up and that you are able to rejoice with us as we ARE seeing victory over these past few weeks.

Thank you. Thank you so much.

Thursday, April 21, 2016

Accessibilities Summit 2016

Last weekend I helped my mom out with her business, Trippin' with Jamie, at the Accessibilities Summit in Mclean, VA. This conference is focused on helping families with specials needs connect with service providers and other families, as well as having speakers and workshops talking about various topics all focused on special needs.

For those of you not familiar with Trippin' with Jamie, my mom is a travel consultant and helps families plan vacations. She has and does help anyone who wants to travel (yes, that was a shameless plug for her business, but hey, who doesn't want to travel??), but she also has a special interest in helping families with specials needs navigate the crazy world of vacation planning.

The coolest part for me helping at these sort of events is being able to talk with parents who had no idea that travel with their child was even a possibility. Many times, when there is a family member with special needs, all the parent's time and resources go toward that child just out of necessity. When they realize that there are so many vacation options now that can accommodate children both with and without disabilities, they realize that they can actually do something for their other children while still making sure all their special needs are met. 

Why am I sharing this? Other than doing some marketing for my mom's business (Trippin' with Jamie! =P), it's to share that I don't mind being the "token disabled person." Part of the reason that I enjoy being a part of these conferences is because I can stand up and share my personal experiences of traveling with a disability. 

I know what it is like to be living with a feeding tube and wondering if I can go on vacation attached to a feeding pump and a tube hanging off my body. I know the anxiety that comes with having severe food allergies and wondering if I'll be able to eat anything and have to hope the kitchen understands cross contamination. I've struggled through being unable to walk and having to plan activities around whether I can use a wheelchair or spend most of the time sitting. I deal with limited energy and knowing that my body can't handle a full day of activities and having to prioritize what are must-do activities, what are hope-to activities, and which ones I sit out while my family may go and do on their own.

BUT, I also know what it is like to enjoy a cruise to Alaska while being on a feeding tube and having limited energy. I know what the access laws are for a service dog and what I can and can't do while traveling with Leni. I know what it's like to know where the closest hospital is and how accessible the ER may be from wherever we are staying. I've dealt with making accommodations to make sure my needs were met and still having a great trip with my family.

Some of my best memories from growing up are from trips we took as a family. Some of my best memories as an adult are also of the trips we have taken as a family. I didn't have my medical issues as a child, but I do now and we haven't let that stop us. Our trips may look a bit different than they did when I was a kid, but that doesn't make them any less memorable. Planning and taking vacations now IS more complicated, any sort of special needs will do that. But that doesn't mean that it can't be done, and if anything, it makes us appreciate our vacations that much more.

No two families deal with the same special needs, but being able to share our personal experience traveling with my medical issues helps families know that we understand. I love being a part of Trippin' with Jamie because it gives me the opportunity to help other families living with disabilities and special needs realize that making memories on family vacations doesn't have to be off the table for them. Yes, traveling with specials needs is tough and it probably won't ever be "easy" but our knowledge of the travel industry and personal experience dealing with my special needs means we can make it a bit easier.

We get it. We know the struggles of day-to-day life with a chronic illness. We know how much more complicated travel can be with special needs and that just thinking about traveling can feel overwhelming. That's why we do what we do and why I love being a part of Trippin' with Jamie.

Thursday, April 14, 2016

Thank You to Those Who Cared

Dear Healthcare Provider,

I know this may be a bit jumbled, but please bear with me.

I just want to say thank you.

If I've seen you for any length of time, I'm sure you know by now that I'm never short of ridiculous stories of bad doctors and what happens to a professional patient living with a rare disease. And while the stories can produce a laugh after the fact, in the moment these experiences have been so draining, frustrating, and downright awful.

But that's not why I'm writing this. Instead, I'm writing to you who believed in me. I know I'm more complex than your typical patient. I know that my body does not play by the rules and likes to throw curve balls. I know that taking me on as a patient means extra work on your part.

I'm sorry it has to be that way...but thank you.

I wish I could express in words what it means to have you believe me. I know there is no way to adequately express my appreciation of your being willing to put in the work to manage my care and be an advocate for me to other providers.

How do I thank you for believing something was actually wrong with my GI tract when so many were convinced I was just starving myself?

How do I thank you for being my nurse and for being willing to take my side against doctors who wouldn't listen and doing your best to keep me safe while in the hospital?

How do I thank you for refusing to give up searching for answers and not telling me "it's all in your head" even when test after test came back "normal?"

How do I thank you for not being willing to accept my loss of coordination and balance as permanent and designing a physical therapy program to focus on helping me regain what I had lost?

How do I thank you for taking the time to learn about mast cell disease just so you can provide the best possible care for me even though it means extra work for you?

Sometimes words just don't do justice to the gratitude I have for you who refused to give up on me. I wish I could better express how much you truly mean to me. I may not even see you anymore as my provider, but know that your piece in the complex puzzle of my healthcare is not forgotten. There are times that the English language (or any language for that matter) just can't fully communicate what I want to say. So for an incredible lack of a better phrase:


I mean that from the bottom of my heart. There are just no words. There is just no way to adequately thank you for the impact you had on my life.


Monday, April 11, 2016

Seasonal Identity Crisis

The weather in Ohio right now is acting a lot like a rare disease...or chronic illness in general. Sunny and 70 degrees on Easter, two weeks later and we're get 6 inches of snow...sounds a lot like my life right now...

After the first Xolair injections, I felt better than I had in a long time. I was able to start eating again, Nick and I went hiking, I had more energy and started being more active. It was great! Second round of Xolair hasn't been quite as good...3 ER trips in less than 2 weeks, probably should have had 2 more but I was just OVER date nights...feeling pretty worn out and sick...just not what we hoped would be after getting the next round of Xolair.

Was it just a fluke that Xolair had such an incredible effect the first time? Maybe this month is a fluke? Did we have a "honeymoon" period after the first injections so we had higher expectations this time? WHO KNOWS? Life with mast cell disease is about as predictable as the weather in Ohio...

As I'm writing this, it is just starting to snow for the predicted 4-7 inches tonight into tomorrow morning. It's April so you'd think it's starting to warm up, but apparently Ohio missing the memo that it's now spring...just like my body missed the memo that Xolair is supposed to be making me feel better...

BUT, just like I know that despite how long it may take for spring to come to Ohio, I know it is coming, I have to believe that feeling better is right around the corner, too.

In the meantime, life goes on! I had a great GI appointment last week and have scheduled an endoscopy and tube change (good-bye Herman 2, welcome Herman 3!) in about 2 weeks. We are also in the process of scheduling some motility testing to see how my GI tract is actually functioning. I did much of this testing about 6 years ago, so being able to compare will be good to see if things are progressing and if we need to approach treatments from a different angle. (Plus half our appointment was spent talking about poodles since he has 2 and he just had to show me photos of his dogs and ask all about Leni =P)

I've started a new medication that should help my body regulate my blood sugars a bit better so I'm not dropping super low as often. It hasn't really don't much yet, but can take up to a month to actually work, so we're still waiting. I have officially been cleared by my cardiologist (PRAISE GOD!) after my 2 week heart monitor came back normal, so I can cross one specialist off my list for now. I'm seeing my allergist again this week just for a quick check-in and recap of what other appointments have been going on since he is kind of my primary doctor in this area. Always lots going on...professional patient status = achieved...

In non-doctor news, I'm heading to VA later this week to help my mom out with a conference with her travel business (check her out! Trippin' with Jamie) and spend time visiting with my family! Maybe VA remembers what spring is supposed to look like...Nick and his parents will come later to spend the weekend to celebrate Passover (a month late, yes, we know) with our family and friends. This is one of our favorite times of the year so we are all super excited! My brother is even flying back from CA to join us!

As always, thank you for your prayers and encouragement. Recently I have been feeling very encouraged in Christ and at peace despite all the craziness going on, but that doesn't mean that I don't have times when the doubts creep in and start to permeate through everything. During those times, sometimes all I can hold onto is the truth of who God is and what He has promised. I truly believe that all your prayers are what is carrying Nick and me during this season of life. As we are beginning to see the sun on the horizon, we hope and pray that soon we will be sharing more and more the victory that God is bringing about in our life.

So thank you, and I mean that. Sometimes I wish there were better words to express the gratitude I have for everyone reading this blog, praying for us, just coming alongside us, whatever your role may be, know that it is being used to encourage us. If any of you reading this blog in VA want to meet up sometime while I'm in town, send me a facebook message or email or text! I'd love to catch up and thank you in person for all your prayers.

Monday, April 4, 2016

When Being Sick Means You're Never Sick

I know, confusing title. But hey, living with a rare disease is confusing, so it fits!

Having a rare disease or any chronic illness means that life is lived in a weird place between so-sick-I-need-the-hospital and let's-just-ignore-the-pain-and-have-fun. Even when I am going out and doing things, I still have symptoms...I've just learned how to live with them. I have a "new normal" where what used to be considered symptoms are now just my baseline.

It's like that story about a frog that is put in a pot on the stove. If the water is already boiling, the frog will freak out and do everything it can to escape. That is an acute illness. All of a sudden you're thrust into a boiling pot of symptoms and something has to be done to get out.

If you take that same frog and put it in the pot before boiling and slowly increase the heat, the frog will learn to adjust to its surroundings and not jump out. This is chronic illness. We're placed in this pot of increasing symptoms and while it is uncomfortable at times, after dealing with it for some amount of time, we eventually learn how to manage. (Side note: no idea if this would actually happen if you tried it with a real frog, but for the sake of this example, we'll go with it =P)

But what happens when these intersect?

Two weeks ago, I had an explosion of severe pain in my right lower abdomen. A non-chronically ill person would probably immediately head to the ER suspecting appendicitis. But it's a bit more complicated for me...we know I deal with stomach pain, slow motility, nausea, vomiting, etc. on a regular what point do my symptoms move from "Kylene normal" to actually concerning? We struggle with this often. I get weird symptoms and my body does wacky things. Many times we just attribute it to my mast cell disease and move on. But what if that means we are missing something else that could be serious.

What if the fact that I am chronically sick is making us miss an actual "normal person" sickness. There's a fine line there. We don't want to have to check out every new symptom as though it is unrelated because the reality is that 9 times out of 10, it IS a product of my mast cell disease. But there is still that 1 time where I might actually have something unrelated. When my chronic illness becomes an acute sickness, things get more complicated than they already are.

Just in case you were wondering (or worried =P) turns out the pain fell into that 9 times out of 10. We are very thankful that it did not turn out to be anything more serious and we were able to come home that night. Actually, it was probably one of the most efficient ER visits we've ever had, in and out in just over 2 hours!

Overall it was still a pretty good day, too! Oh the irony of having sudden onset severe pain, taking an ambulance ride to the ER, spending 2 hours being poked with needles, getting meds that make me super loopy, and having to get a CT scan, still having no explanation for the pain explosion, and coming home before midnight and STILL being able to say it was a good day. Guess it was because I wasn't ACTUALLY sick that night =P Chronic illness is a complicated mess sometimes...

Friday, April 1, 2016

Is Kylene is Running Again(?!?!) and Running for Rare Boston Training Update

Guess what blog readers?? I'm running again! Don't worry, I'm starting slow and will work my way back up to where I was, nothing crazy =) I ran an easy 10 miles this morning and felt great! I'm actually thinking of joining the R4R team at Boston this year!! Stay tuned for more details...

ANYWAY, this post is about my Running for Rare teammate, Sarah Batchelder, and the fact that there is less than one month until the Boston Marathon! Sarah has been training hard and completed a 21 mile training run this past weekend with the team.

The R4R team met up Boston on parts of the course for a 21 mile charity training run. It was a chance for the local runners and patient partners to meet up, raise awareness along the course, and spend time getting to know each other. Teammates from both the Boston and Providence teams made an appearance at the event!

Aside from the actual races, this is one of the biggest R4R events leading up to Boston and Providence. It is a huge volunteer-run event that bring as much of the team together as possible. Obviously there are a good number of us that are not local, but it brings together those that are, both runners and patient partners. Volunteers line the 21 mile route to provide water and nutrition every 5 miles for the runners. Thankfully this year was sunny and a gorgeous running day unlike previous years where it has been freezing or even rainy/snowy.

Sarah joined another R4R runner for the run and they were able to be cheered on by her patient partner at the aid station at mile 15. I, of course, was there in spirit! =)

It was a great event for the R4R team to meet up, raise awareness, and come together with a common goal and motivation. I know that I, as a patient partner, and so grateful to all the runners who are using their ability to make a difference in my life and the lives of so many with rare diseases. I hope to one day be able to not only be just a patient partner watching from the sidelines, but running with my runner as the face of a life that was changed by rare disease research.

As these races get closer, please take a moment and consider supporting Sarah as my runner and the entire R4R team. The funding they raise goes directly toward rare disease research which is desperately lacking resources. The motto of the R4R team and the rare disease community is:

"Alone I am rare, together we are strong!"

The rare disease community does not have to be faceless anymore. I am just one person, but even my life is a testimony of the challenges that come with living with a rare disease. Help me, Sarah, and the R4R team make a difference in the rare disease community by supporting Sarah in the Boston Marathon in April. She is just over halfway to her goal, and it would mean so much to me and my family to have you join us in not just raising awareness but also funding to support the research being done for these rare diseases!

So, for those of you than read all the way to the end...APRIL FOOLS! No real running for me yet =P I did run about 200 yads in physical therapy but then my legs forgot how to be legs and the run was over. It's going to take some time, but I will get back to running! I have that hope because of ongoing rare disease research showing the potential for successful treatment of mast cell diseases. Much of that funding is raise through teams like R4R and everyday people who donate for family and friends living with these conditions. Please consider being a part of making a difference in my life and the lives of so many fighting to regain what we have lost!