Sorry for the delay in getting this post out! I know some of you are following along day to day. The last few parts to this story may come out with a couple days in between. My husband, Anthony, and I are going to Sacramento to attend a seminar this weekend! I will try to and write as much as I can while I am gone!
Everything I was trying to ignore during this scary time (I believed that everything was fine though, due to all of the “It’s going to get worse before it gets better,” talk) had me desperate to get away. I decided to make the eight hour drive to Perryton, Texas, (the town I was born and initially raised in) to visit my great Aunt Lucy and several friends who lived in the area. A couple of days after July 4, 2013, I did just that – I loaded up my tiny green Fiat and left for Perryton.
When I got there, I had to explain to Aunt Lucy the crazy diet I was on several times. She was well into her 90s at the time and still thrives on chocolate. She knew a little but hadn’t really been told a lot about all of the “tummy troubles” so it was tricky for her to understand why in the world I wasn’t eating any fun sweets! I stayed true to my diet and took my gross supplements and drink things but I was barely able to tolerate any of it. I really don’t know how I was still able to function after that long car ride.
After a few days, I went home knowing I had a flight to southern California in a couple of weeks. I was going to visit Lukaza (a friend from the pre-college program at California College of the Arts) and my Aunt Judy! I was so excited about this trip. I craved getting away. I don’t know what it was – perhaps the desire to run away from what I knew was all bad news.
On July 22, 2013, my dad took me to Dallas Love Field to catch my flight to sunny California. He asked me several times if I felt okay enough to make this trip. My dad is cautious and asks questions and he knew that I was not doing well, but ultimately he supported my choices. I was so weak I had to be pushed through the airport in a wheelchair, but I was adamant that yes, I was fine and wanted to get on the plane to go to California.
As we waited for loading, we sat and talked and laughed in the waiting area. My dad recently told me that as the attendant wheeled me down the catwalk to the plane, a couple sitting near us in the waiting area had asked if I had just completed treatment for cancer. I was so weak and looked so bad that my plight was obvious to everyone (even complete strangers). Nevertheless, I flew out, with all my gross supplements and I was ready to enjoy some California sunshine.
I landed in Los Angeles where my friend, Lukaza, and her mom, Suchi, picked me up. I’m sure they were terrified just looking at me but they’re so sweet and didn’t say a thing. We went to their house in Santa Monica and they listened to me tell them all about this diet and the hopes I had for my health. Suchi took us to pick up a dinner that fit my guidelines. They were so accommodating.
In the middle of the night though, I started vomiting. The next morning, I was so weak I couldn’t get out of bed.
I was emailing back and forth with a woman from the group who made the supplements I was taking. I was telling her my symptoms and that I was barely able to function. Here I was asking a woman who knew nothing of my health condition if it would be okay if I went to the hospital. She kept up the, “It’s going to get worse before it gets better,” mantra, but told me it was ultimately my decision to go to the hospital or not.
I finally decided to call Aunt Judy to come get me and take me to the hospital. She drove the two hours up and we made our way to Scripps Hospital in Encinitas.
At this point, I decided to mass text those close to me as well as the people who were “healing” me that I was in California and heading to the hospital. While everyone was very kind letting me know they were thinking of me, the man who was in charge of my “care” replied with a message along the lines of, “Please never send a group text to me again. I do not want strangers to have my personal cell phone number.” That was the last thing he ever said to me. Even after I apologized and told him I just wanted him to know what was going on. That was it. It still crushes my heart to think of the last interaction I had with this man.
Anyway, when we got to the hospital, they started my typical hospital stay routine. It went like this, IV fluids started to get me hydrated. NG (nasogastric tube) down my nose and into my tummy hooked up to suction to get anything above the small intestine out. They got a little more than 2.5 liters of fluid and other junk out the first night – which is pretty insane.
All the while, I wasn’t allowed anything by mouth. They did several blood tests to rule out possible potential problems. I had several X-rays taken to prove that they wouldn’t ever be able to see anything through all of the gas in my stomach (which has always and forever been the case). Then, I had a CT scan so they were able to see a little something and were able to rule out a mechanical obstruction (actual blockage caused by tumor/growth or anything like that).
When I was admitted later that evening, they rolled me into a room with another bed AND another human in it. I had NEVER had a hospital roommate before and I did not handle it well either, ha! I have always felt that when you are ill enough to be admitted to the hospital, there is no way that you feel up for constant company.
From my standpoint, everything seemed to still be just as it always had been – except for I still hadn’t gone to the restroom. It had probably been nearly a month. They had started me on IV antibiotics to help with intestinal bacterial overgrowth and a drug called Reglan. This is a drug I usually refuse, but was willing to try to make things move faster, if possible. I had my NG tube taken out four days after getting there and was started on a clear liquid diet.
Usually, the NG tube doesn’t come out without suction being turned off to see how you do without it. But this particular NG tube was more painful than any I’d ever had. They used a size that was far too large. As you can see in these photos, it caused some sort of disaster in my nasal cavity and left my eye very swollen. So I was pleading to have it taken out.
A couple days later, the doctors start talking about needing to transfer me to another hospital. They were trying to transfer me to San Diego Children’s Hospital to see a motility doctor there. I was really excited, because remember the cute room I talked about several posts back? But it ultimately didn’t work out. The doctor they were hoping I could see wasn’t practicing there anymore and I was no longer involved with pediatric medicine!
I was getting really great care at this local hospital even though there weren’t any specialists available. They had these gorgeous gardens that I could go hang out in. I loved going outside and laying on the benches and soaking up the sun whenever I was able to! I also had been moved into a private room after several hours of the roommate situation. I probably was the sassiest girl while I was dealing with both a terrible NG tube and some stranger in the room next to me!
My care team came up with a new plan to replace going to Children’s quickly. They gathered my medical records from all the hospitals I’d been to in Dallas (this was quite a feat by itself) and had them sent to the University of California San Diego Hospital in La Jolla. Since UCSD is a university hospital, they had motility specialists for me there.
Since it was going to be at least a couple days before I transferred to UCSD, the doctors at Scripps were concerned with my severe lack of nutrition. They didn’t feel we were ready to place a new central line, so they resorted to what is called PPN, Peripheral Parenteral Nutrition. It does not provide fat and is less concentrated than TPN. The perk of it is that is administered through a regular peripheral IV and would give me at least a source of some nutrition.
While I was waiting to get my room at UCSD, my stomach continued to get worse. Since I’d had my NG tube taken out and nothing was moving, my belly continued to get bigger while the pain got worse. For the first time in my life, I asked to have a new NG tube placed to get some relief.
I made sure to tell them exactly how I wanted it. The size of the tube (but they couldn’t find this size and ended up using an even smaller tube which caused issues later, but for the time being I was happy with it), how I wanted it taped to my face (I’m very particular about this and the way they’d done it the previous time was TERRIBLE) and what kind of medication I needed to help me get through the procedure. The best part was – they listened to me! This time things went much more smoothly and I got some relief my decompressing my stomach.
To make time pass, Aunt Judy and I played games in the garden for hours on end. Sometimes a therapy dog would come out and I’d get to love on her for a bit. It really was as enjoyable as possible (especially for an adult hospital.) I’d even gone to the bathroom like a human should! Whew! Things were finally starting to look up a bit.
See you here next time to tell you the next part of the story when I finally made my way to the new hospital!