August was gastroparesis awareness month as well as all other motility disorders. I am a little late in posting this, but I have been really busy with teaching. I now have two motility disorders. I am trying to spread awareness because I am in desperate need of solutions, hope, more diseases to be tested for, and I know that there are many others who feel the same way as me. I also know that others have found answers through doctors and I hope to be able to find answers as well.
SMALL INTESTINE
On June 23rd, while in the hospital, I was told that my stomach was no longer functioning at all and that my small intestine had slowed way down. Over the past two months my small intestine has stopped working as well. The small intestine is where my j feeding tube is and it is how I'm supposed to be getting my nutrition. My feedings began coming up through my stomach and out of my g tube or out through throwing up. I'm throwing up now 10-20 times a day, mostly feeding and bile.
I am not able to chew gum, eat tic tacs, suck on jolly ranchers, or even drink water now without throwing up. This means that I have to get all of my fluids for the day through my small intestine, but because of the paralysis I'm not absorbing what I need. I'm not absorbing the meds that I'm taking and dread doing my feedings every day. On days where I skip my feeding the pain is much more bearable, but then I don't have energy because I didn't get my fluids or nutrition.
It it interesting that the very thing that is keeping me alive is what is causing me so much pain and nausea, but I have to do it so that I can stay alive.
HOME HEALTH
On August 3rd I was placed back on home health. This is where a nurse comes to your home to help you with whatever you need. My nurse was supposed to be coming to do weekly iron infusions as well as hydration through an iv. She attempted to put an iv in for almost 3 hours, but had no success. My veins like to flatten, are very small, and have a lot of scar tissue.
PICC LINE
She called my doctor who made the decision that I needed to have a mid line placed again and so my family drove me up to Provo to get one placed. They attempted 6 times on my left arm and 2 times on my right arm. They were able to get the line in each time but either hit a nerve or the vein flattened. The lidocaine didn't work to numb my arm and so I felt it every time. Luckily after attempt 6, they let my sister-in-law come back with me so that I didn't have to go through it alone. After attempt 8 I was sent to radiology to see if they could get one in.
Once in radiology the radiologist was able to place a line, but decided that because of the damage in my veins it would be smarter to place a Picc line instead. Mid lines are less invasive because they are only about 14 centimeters and can only stay in for about a month. Picc lines are more invasive because they go through your arm all the way to the top of your heart and can be kept in for months. They placed a double Picc line and then sent me home to start fluids immediately.
My arms were beaten up, swollen, and bruised for about 5 weeks. I could barely move them for weeks, but every day they get a little bit better and I'm able to move my arms a little more.
ROBOT BODY
I truly am starting to feel like I'm half robot with all of these tubes keeping me alive. I told my mom after getting the second tube placed that there was no way I'd ever let them put more tubes in my body. 6 weeks later I began a new reality with 4 tubes coming out of my body. I started my first week of teaching and as I explained the feeding tube to my students I told them that they have a really cool teacher because I'm kind of half robot/half human. :) This made them really excited and they haven't worried about my tubes since. They worry when my backpack starts beeping and laugh with me when silly things happen with my tube. They even told me that they tell the other students at school that their teacher is a cyborg and so I'm the coolest teacher. They sure know how to make me smile and feel normal!
TEST RESULTS
They are in the process of testing me for POTS syndrome. I had to wear a heart monitor for 24 hours, get an EKG, an echocardiogram, and will possibly do a table tilt test. If I have this they will start me on steroids. This would explain the passing out and dizziness. The steroids and adding extra salt and electrolytes to my fluids will help with this syndrome. They think that I got this from my gastroparesis and that the final trigger was running so often preparing for the half marathon this past May. They say I should never run again, but I'm hoping to one day be able to again because I love the joy I receive from running. My cardiologist said that I'm so dehydrated and malnourished that he can't definitively diagnose me with this and that he doesn't dare do a table tilt test because my body isn't healthy enough to do it. I go back on September 20th to see if I'm hydrated enough to run more tests. http://www.dysautonomiainternational.org/page.php?ID=30
They did a special ct and ultrasound of my heart to test for MALS disease. This is the disease my family had been praying from June until August 9th. This is where a ligament by your heart is constricting the celiac artery. The celiac artery pumps blood to both your stomach and small intestine. If the artery is being constricted it would cause the gastroparesis as well as the paralysis of the small intestine. There are two surgeons in the country who perform this specific open heart surgery. We would go to the surgeon in Los Angeles. He has had a lot of succes and most of his patients are eating within 24 hours of the surgery. Sadly I found out on August 9th that I do not have MALS disease. The blood flow through my stomach and intestines is slow, but is not being constricted by a ligament. This brings them back to POTS syndrome. http://my.clevelandclinic.org/services/heart/disorders/arterial-disease/median-arcuate-ligament-syndrome-mals
The sent off a bunch of autoimmune panels to Mayo Clinic and they all came back negative. They can't definitively say it wasn't caused by an autoimmune disease but Mayo Clinic is pretty sure that it is not what caused the gastroparesis. http://www.dysautonomiainternational.org/page.php?ID=124
WHAT NOW
I'm now back at square one. My internist and cardiologist are taking some time to do more research and hopefully come up with more tests to run. I will meet with both of them again mid-September. My family is praying that they will have some new ideas and help restore some hope for me. We are also looking at going to John Hopkins. They have some specialists there with motility disorders. There are even a few trials going on there. Sadly I was not able to even get on the waiting list because it is so long. I will keep trying and hopefully my doctors will be able to convince them to put me on the list and maybe even get me in to see one of the specialists there.
We are also thinking about Mayo and Cleveland, but I am still seeing my doctors here because thankfully they are not ready to give up on researching for me. If they can get my small intestines to start functioning then I'd be able to join a trial at Cleveland and get a gastric pacemaker placed. http://www.cpmc.org/services/gi/services/gastric_electrical_stim.html
I have now figured out that I spend almost 20 hours every day hooked up to some sort of nutrition to keep me alive. My feedings take almost 14 hours now and then I do 2-3 bags of hydration through my Picc line, which takes about 6 hours depending on how dehydrated I am that day. I have to wake up through the night to change bags but the hydration is really helping with my skin color and energy. :) I'm hoping that they will put in a port soon because they are easier to manage, easier to hide, and less terrifying than a Picc line. http://www.uwmedicine.org/health-library/Pages/chest-port.aspx
NEW SCHOOL YEAR
I just began teaching 3rd grade and I'm excited to have this distraction from my health. I've already been sick twice and so my students have become wonderful about sanitizing. I love how kids always see the bright side of things and aren't judgemental about my health. They make me smile every day and bring such determination to keep fighting!
WAITING GAME
I hate being in the waiting game because I am not a very patient person and I feel like I've been waiting for years to get answers. I am trying to have faith in God's plan and to understand why this has happened to me. The one thing that has helped me to get through each day is to look for the blessings through this trial and to understand that this may never be taken away from me on the earth. I am just trying to make each day the best that I can. I've created a bucket list to help me enjoy each day. It has fun choosing to spend what energy I have to achieve the fun things on my list. I've rolled down temple hill, eaten a chocolate covered strawberry, watch the county derby and rodeo, etc. I plan on learning how to fish and shoot a gun, go camping and hiking, go horseback riding and on a four-wheeler ride, and so many other things. I think everyone should have a bucket list that brings out their inner child. :) I also have a goals list to help me remember to focus on serving others and not dwelling on my health.
LOOK FOR THE BLESSINGS
My life motto is now LOOK FOR THE BLESSINGS.
Some blessings in my life right now are:
-My mom and dad who have come to my side whenever I've needed them and have never given up hope.
-My siblings who have been such great examples to me and have always been by my side.
-My nephews and nieces who pray often that I'll be able to get all of my tubes removed so that we can have an eating party for the rest of my life. :)
-My friends who pray for me every day, who treat me like nothing is wrong, and haven't abandoned me just because I am sick.
-The knowledge that God has a plan for me, that he loves me, that families are forever, and that Christ knows exactly how I feel and will never abandon me.
As you go through your own trials, whatever they may be, I encourage you to look for the blessings in your life each day because I know that seeing the blessings through the trials will help you have joy as you go through the hard times. #lookfortheblessings #fightsonganthem
LOOK FOR THE BLESSINGS
My life motto is now LOOK FOR THE BLESSINGS.
Some blessings in my life right now are:
-My mom and dad who have come to my side whenever I've needed them and have never given up hope.
-My siblings who have been such great examples to me and have always been by my side.
-My nephews and nieces who pray often that I'll be able to get all of my tubes removed so that we can have an eating party for the rest of my life. :)
-My friends who pray for me every day, who treat me like nothing is wrong, and haven't abandoned me just because I am sick.
-The knowledge that God has a plan for me, that he loves me, that families are forever, and that Christ knows exactly how I feel and will never abandon me.
As you go through your own trials, whatever they may be, I encourage you to look for the blessings in your life each day because I know that seeing the blessings through the trials will help you have joy as you go through the hard times. #lookfortheblessings #fightsonganthem
