A Long Overdue Update: Part 3

In the third week of treatments, things got really crazy. Yes, everything up til now was just the normal kind of crazy we're so used to experiencing.

It was my birthday week, and the Oklahoma Blood Institute that performs my plasmapheresis couldn't schedule me for the normal Monday and Tuesday mornings I wanted. You have to do plasmapheresis for two days in a row to make it work best. So the only option, since I was leaving town for a Rare Disease Patient Summit that Wednesday, was to be admitted on Sunday, do plasmapheresis, stay overnight, another round of Plasmapheresis in the morning, Chemo and IV Soliris in the afternoon, and release me in time for rehearsal that night. Wow! What could go wrong?

Everything.

Sunday went smoothly. I had to remind the doctor in the hospital that I was doing everything in two days, because he thought he had four. I have no idea why four would have been necessary, but anyway...  On Monday, my birthday, I woke up to the scheduled plasmapheresis. Next on the agenda were all the IVs I needed. I received the steroids, the chemo, and Soliris, my normal routine. Then the nurse said I would be getting an additional drug, IVIG. I knew my insurance had denied IVIG for some reason, which is why we weren't doing it outpatient. But the doctor said he didn't care, I was going to get it.

This drug started infusing, and about a half hour in I started feeling a horrible lower back pain. It started to spasm, and sped up so quickly it started syncing with my heart beat.  It would pulsate pain for 12 beats and then ease off for 4 beats. This got more and more intense until I couldn't speak through the pain any longer. As I was writhing in pain, Matthew snuck in a video of me.

Then I read the bag of IVIG and saw something alarming. The solution of IVIG had been mixed in sucrose. That may not mean much to most people. A month before this it wouldn't have meant much to me...

FLASHBACK TO A MONTH BEFORE.......

Dr. Nephrologist: I want to give you IVIG. It's a really potent drug and it's going to make you feel really crappy.
Me: Ok, fine. As long as it does the job, I'm ready.
Dr. Nephrologist: Just don't let them mix it in sucrose. It would be bad. It's kidney toxic. (little laugh) They won't, but I know you like to know things, so just make sure they don't mix it in sucrose.

FLASH FORWARD TO PRESENT SITUATION......

I see the word, Sucrose, on my IV bag, and I hear horror movie music screeching. I text my doctor, he calls, and I tell him what's happening. He tells me to stop the IV and hand the phone to the nurse. She flushes me with saline and says she will be back after hanging up the phone. I start worrying.

Ten minutes later, my doctor rushes in to my hospital room, something that rarely happens.

Dr. Nephrologist: Do you want your bed, or do you need a wheelchair?
Me: Whatever is faster. Bed?  Why? Where are we going?
Dr. Nephrologist: We have to get you down to dialysis.  We have to get that poison out of you before it kills that kidney.

Five hours later, I finish dialyzing at 10 pm, the same night I turned 35. All we can hope is that we acted fast enough and that I noticed the mistake early enough to get the poison out before it really caused some huge damage. Two days after this incident I was to leave for California, but if I was going into renal failure I would have to cancel.

My doctor called Wednesday morning and told me to pack my bags.  I asked him what my creatinine was. He said again, "Pack your bags."

Interesting...

Also, Ryan West (Black and White Photos) and Dan West (Color Photos) stopped by before the whole poisoning fiasco to take more photos. Behold, a realistic look at what I do in the hospital:

A Long Overdue Update: Part 2

We had to postpone plasmapheresis for a week because of the C. Diff infection. It would be too dangerous to start it while fighting C. Diff. So Mom went home, and we prepared for the battle.

The first week went as smooth as you might imagine.  I demanded we perform everything outpatient so I wouldn't have to be admitted overnight and miss my first night of Macbeth rehearsal. It was more work for my doctor, as in more phone calls, but I got to sleep in my own bed each night and still go to rehearsal.

The plasmapheresis went as well as you imagine.  It leaves you shaky and weak. and the chemo injection site hurt horribly. I couldn't sleep because of the pain in my arm. I didn't learn until week four that it was possible to be given intravenously to avoid the pain and bruising.  Of course...amateurs.

                                      
After my first two treatments, it was revealed to me we were doing this for FOUR weeks, not one.  When I confronted my doctor with this information, he denied ever saying it would be one week. But I reminded him of the temporary groin port he had wanted me to get that would have only lasted one week, and he confessed the groin port would have been a mistake. It just goes to show you, kids, QUESTION EVERYTHING. Because they aren't thinking of everything, and the numbers are most important. Your convenience isn't always the first priority even if that means putting you under the knife more often sometimes. 

I also stopped leaving the apartment for all other occasions in order to avoid contact with other people and hence, infections. If I did venture out, I had to wear a mask and gloves.

 But Matthew and I kept optimistic about the progress, despite the fatigue and nausea.  It was all worth it to save Apollo. He is the most important thing, and the light at the end of this tunnel.

Meanwhile I got pictures back from a shoot I did with Photographer, Ryan West, before the surgery.  I love them, and they were really fun to shoot! Yes, that is my wedding dress, and it is so much cleaner now! No one ever suggests jumping in a pool to brighten it up, but it really works! :)

Photos by Ryan West Photography.

A Long Overdue Update

The last time I posted a health update was over a month ago, and I apologize for that.  Things have gotten wild.  Chemo and Plasmapheresis have taken up a lot of my time, and there have been some, ahem, setbacks in the process. I'm going to post the updates in a few entries.

Let me start with the beginning of September. Remember, my doctor was resistant to a chest port tunnel line, as he told me things would be temporary, as in lasting one week. My mom came to help out, thinking this would be one horrible week. Just one.

 Here's the gratuitous picture of all six kidneys together. :)

 And here is a pre sugery picture, when things were seemingly smooth.

The tunnel line surgery was a little unusual. It turned out that I just wouldn't fall asleep on the surgery table, so they had to keep giving me different kinds of drugs to knock me out.  They gave me four times the dosage of Demerol it usually takes someone for my size to go out, and at one point I heard them ask for Benadryl (it multiplies the impact of narcotics-many drug addicts ask for a cocktail of both in the ER). So because of the high dosage I was on, it took me about 24 hours to be able to function on my own.  As I mentioned, my mother was visiting to take care of me and it was a good thing she did. Because about five hours after I came home, I started vomiting and never stopped.  ALL NIGHT LONG.

Matthew and Mom rushed me to the hospital because my chest port started bleeding, which they told us was a reason for the ER. The OU ER was totally full, so they suggested heading a half hour north to Edmond, which also ended up being totally full on a Monday night. So we then headed to an outpost ER in Edmond and not one person was there. My drugged up mind remembers the nurses playing poker when we walked in... that can't have been real.

They treated me with IV fluids while I kept throwing up the nothing in my stomach. I was literally telling her my med list while I was vomiting. Fortunately the chest port stopped bleeding, and they sent us home with anti nausea medicines (one of which was a suppository. I stopped throwing up before needing to use those.)

It turned out I had a C. Diff infection.  C. Diff is caused by overexposure to antibiotics. I have had so many infections that it led to another infection in my intestines. Hence the vomiting and diarrhea.

YAY!!

But there I was, chest port in place, ready to start chemo and plasmapheresis to save Apollo. Easy right? 

No. Not easy at all.