Hey everyone! We are on our way to Sacramento, California to attend a seminar for TPN patients! We are so excited to have been invited to come to this event and provide input on some new possible products and to learn more about what’s happening in the TPN world!
Jumping in today where we left off yesterday!
The very next day, I was on my way to my new (shared) room at UCSD! I had my sassy powers all lined up to get into the first private room available! When I arrived, my new roommate didn’t even wave back when I was wheeled into the room! (If you’re up on your TV shows – as Stephanie Tanner from “Full House” always said, “HOW RUDE!”) Now for the good news – this hospital was swanky as all get out! It felt like a nice hotel. It had wood floors, big palm trees in the lobby, built-ins for the TV and cute little drawers for my clothes and stuff! And even better, before I had spent a full night, my nurse came in to tell me that my private room was ready! Oh thank heaven for diligent nurses.
After a couple of days with more x-rays, blood sugar and blood pressure drops, my doctor came in and had a sit down with me. He told me I needed to start back on TPN. He said they were going to place a PICC line (remember the last time I had a PICC and didn’t use my arm for the entire week of having it? Yeah, that kind) and get me to a baseline of health with the help of TPN. I told him I did not want to lead them to believe that I was going to continue on TPN and I wanted answers to how I was going to get better. But at this point, I did agree that TPN was the safest option.
While I was getting mentally prepared for the PICC line placement (I thought I would have at least a full day to do this since hospital time usually makes things take seven times longer than you’d expect) someone knocked on my door and came in. They had the terrible cart with them that means PICC line time. I hadn’t even had an hour to process this mess! Get out of here! But no, it was time.
My first question was what I was going to be given so I didn’t remember the procedure. I can’t handle vein talk. I can’t deal with people looking around on my arm with a sonogram thing to find the perfect vein. I just cannot. I knew I wasn’t going to get through this without some help from some drugs. After we sorted this all out and I was less anxious, I got my second PICC line placed and they got me started on TPN!
While that’s all gone great, what isn’t going great is that my NG tube is so tiny that it’s not doing a good job getting the stuff out of my stomach. So now, the NG tube had to be changed to a larger size to be effective. I was absolutely terrified because I’d had three NG tubes pushed through my nose in less than two weeks! But the nurses who did it were extra gentle. I would like to say that my nurses at UCSD were top notch. Now, I was all taped and tubed up and things went pretty well for a couple of days.
A couple days later, my doctors came in to tell me that my liver numbers were terrible. I thought my doctor in Dallas had taken me off TPN the year before to improve my liver numbers! The thing is, when you’re super malnourished, you can get a fatty liver. That doesn’t make much sense, does it? Now we were talking about stopping TPN until they could do a liver biopsy to see what the actual organ looked like. Combined with everything else going on, this was super scary news! If my liver was too sick to handle TPN, what was the plan going to be?
While I was at UCSD, I had lots of fun visitors! Aunt Judy has lived in Southern California and has lots of friends and they would come and visit and it was so much fun to meet them. Word also got out that I loved orchids, so I was getting lots of those to decorate my room with!
Liver biopsy day happened and this is one of my most favorite stories to tell! I’m in the room where they do the procedure, they give me Fentanyl and Versed to help with pain and to somewhat sedate me. Apparently, I asked one of the nurses if they could send me a picture of what my liver looked like, which you can find below. I didn’t remember requesting this until I got an email with this photo in it, ha!
They start using an ultrasound machine to locate my liver and it’s nowhere to be found! Even in my super sedated state, I knew this was going to be the case. I’d had multiple ultrasounds where people were trying to get looks at my liver and it was never where it was supposed to be. In my sedated state, I told them “Hey! Try looking in my back!” I remember the guy saying, “I don’t know what she’s talking about, but she’s known pretty much everything about herself, so let’s try it, I guess.” They flipped me over and found my liver!
This was also the day that I came to realize just how bad my condition actually had been. Aunt Judy had gone to the mall and found they were having a huge sale on soft comfy shirts at Anthropologie. She called to tell me and ask which colors I might want (I think she was getting tired of me wearing the same three shirts!) After chatting with her and hanging up, she accidentally called me a second time and when I answered, I could hear her telling the lady at the store what had happened and that they weren’t sure if I was going to make it. This is when the lightbulb really went off and I realized the severity of the condition I’d let myself get into.
I should have already known! After I’d had most everything vacuumed out of my stomach via the NG tube, I weighed in at 80 pounds – when I left Dallas, I had weighed 99 pounds. But it’s like they say, someone has to accept what they’ve gotten themselves in to to truly understand what has happened.
Still not knowing the results from my liver biopsy, I had a really hard talk with my favorite doctor. This was the first time the term ‘transplant’ had ever seriously come up. He told me that if the report came back with severe scarring and inflammation, I might have to take a ride to UCLA to be evaluated for an intestinal transplant. While this sounds easy and simple, it is far from it. At the time, the life expectancy of a patient after an intestinal transplant was not promising. I did lots of research and found only 13 places in the entire United States where they were performed. This was not ideal, AT ALL.
Several hours later, he came back with the best news! There was no scarring and no inflammation! Just a fatty liver! So I was approved to get started back on TPN!
At this point, it had been just over two weeks of nothing by mouth, which is totally not fun! I’d probably been sneaking really good cough drops (Halls Fruit Breezers, anyone?) for a bit at this point. My throat DID hurt, thanks to four different NG tubes over a couple of weeks but maybe not to the point that I needed to eat a bag of them a day. But Aunt Judy kept bringing them, so I wasn’t complaining!
Finally, my doctor decided to take me off suction to see how I handled some clear liquids! HOORAY! I’ll leave on this exciting note and with a photo of me with my tray of broth, honey, tea, juice and a red Popsicle!