You may have noticed that I haven’t been around lately. Here is why: I’ve been in the hospital for the past 9 days. My “summer vacation” has included blood transfusions, plasma exchanges, and lots of other scary stuff… I’m including details & gory pictures below. Enjoy.
If you know me, you may remember me saying in late May that I got the stomach flu and that in early June I got bronchitis so bad that I got thrown off of jury duty for coughing too loudly. Well, I had went on antibiotics but never quite felt like I got better. I gave it about 2 weeks and went back to my doctor. She said I had fluid behind my eardrums and that it would go away eventually; told me to take Claritin and Zantac.
I started feeling worse and worse. I felt tired all the time, constantly felt like puking – and lots of times I did throw up. And then it got even worse. I started having spells where my heart would start beating really fast, I would get really lightheaded, like I was gonna pass out, then my hands would start tingling, and then I would get this crazy ringing in my ears.
On Sunday, July 12, we got a phone call that my uncle was in ICU. I went up to the hospital and found out he had an infection that was not responding to medicine. My family was there until late Sunday and Monday night. My uncle passed away very early Tuesday morning. [the hospital basically said my uncle had swine flu, but we are still waiting to hear official labs]
On Wednesday, July 15, I called my doctor and requested to have an appointment worked in. I told her that I just watched my uncle die and did not want to be next. I told her everything that was going on and then she pulled the skin below my eye and saw that my eyes were yellow. I had noticed that my lips hadn’t had color in a while – it seriously looked like I was wearing beige lipstick, but I thought that maybe that was just what happened when you were in your 30s.
I had just completed a whole panel of blood work back in March and everything was fine, but my doctor wanted me to have a couple of blood tests. I had gotten the last appointment of the day, so I went in early to the lab on Thursday, July 16 before going to the funeral home. That evening, at about 6:30pm my doctor called me and told me to leave the funeral home immediately, to go to the emergency room, and get a blood transfusion. She told me my hemoglobin was down to a 5 (normal is 15) and that I was in danger of passing out at any moment.
My doctor had also been trying to call my sister (she is listed as my emergency contact) so Lasy told me to just go to the hospital, that she would take my nephew out to my dad’s, and then meet me at the hospital. I told my mom I was very sick and that I had to go (it was my mom’s brother who passed).
I got to the hospital and started going through blood tests and answering questions. I received my 1st blood transfusion that night. My sister stayed late into the early morning hours and finally left around 2am. I was officially admitted to the hospital at about 4am. The next day, the first hematologist to examine me told me he was 80% sure I had a rare condition called TTP, but he wanted to do a couple more tests to make sure. He said the cure was to get a catheter hooked to my neck and to have Plasmapheresis (Plasma Exchange).
At around 9:30am on Saturday morning, the doctor came into my room, said “Cris, you have that nasty TTP. Don’t worry – no one I ever treated has died from it,” and walked out of the room.
TTP is a rare blood disorder, that used to be about 90% fatal. In my case, they thought that the respiratory infection I had caused my body to create antibodies that were destroying my red blood cells and platelets. The plasmapheresis would be done for 2 hours per day, for at least 5 days. After each session, I was supposed to see an increase in my blood levels.
I was immediately taken to ICU and had a Quinton Cathetar installed below my clavicle, into a mainline artery. In less than 2 hours, a specially trained nurse named Sam was drawing my plasma out from one artery, sending it through a special cleaning machine, and putting the cleaned plasma, plus fresh donated plasma into my body through another artery. The process made me extremely nauseous, my lips went numb, and my head vibrated on the hospital bed from the fact that my neck was hooked up to this spinning machine for 2 hours. I was scared. Big time.
After the treatment, my blood was drawn and I anxiously awaited the news. I was not so happy when I got it. My hemoglobin and platelets had went down! I was expecting them to increase! I repeated this process on Sunday, Monday, and Tuesday. My levels kept dropping each day. I even had a 2nd blood transfusion and nothing was helping.
While in the hospital, I did everything I could to get better. I ate 2 bowls of fresh spinach every day, along with raw carrots and grapes to build up my blood supply. I drank only green tea and green superfoods juices, including green smoothies and barley juice. I even made up a sign that said “Make Good Blood” and hung it on the wall so that I could stare at it and remember what I was there for.
When I walked into the hospital, my platelets were at 86,000 but were now down to a little over 40,000. This was NOT good. The blood transufsions got my hemoglobin up to a high point of 8, but that number was dropping daily. I spent most of my days in the ICU praying. I had been told I had a potentially fatal disease and the treatment wasn’t working. I really thought I was going to die.
My thoughts at this point were mostly on my family. I felt really bad for my mom. Here I was, in the ICU, 5 doors down from where her brother died a few days before, and now I was the sickest I had ever been. I also felt bad for my sister. We are very, very close. How could I tell her that I wasn’t going to get better?
There were other doctors researching my case and I took new tests every day. They discovered that I had very low B12 levels. My levels were fine a few months ago in March, but now I had some of the lowest B12 levels the doctors had ever seen.
The symptoms I came into the hospital for are all classic signs of a B12 deficiency. A 2nd hematologist and an internist felt that I probably didn’t have TTP. They transferred me out of ICU into a private room on anohter floor, put me on a high dose of steroids and halted the plasmapheresis. The next day, my hemoglobin grew by 2 points and my platelets rose by 6,000. I took a high dose of steroids the next day and my hemoglobin dropped by 1 point, but my platelets grew by over 60,000 – in one night! (I think the view from the new room helped – I was able to see Hurley, the hospital where I was born and the weather ball! I loved looking at it at night and thinking about all the good times I had downtown Flint.)
Special lab tests that had to be sent out came back and proved that I had Pernicious Anemia, a very rare, and formerly fatal, form of anemia. I will be taking B12 shots for the rest of my life. Otherwise, some VERY bad things will happen to me and I will die a not-s0-awesome death.
I got out of the hospital today. My hemoglobin is still under normal, but that will improve over time. My platelets are on the low side of normal. I’ll be taking steriods for the next week, along with folic acid and will need to learn to give myself B12 shots. I am bruised all over, due to the fact that my platelets were so low. I have a huge pressure wrap over the spot where the cathetar was stuck in my neck… and I am sure to have a scar there. But all of that is okay.
I learned some very valuable lessons this week. I learned how precious health and life are. It might be hard to do, as I am a naturally anxious person, but I am really going to try and live each day to it’s fullest and do things that scare the hell out of me.
And in case you were wondering… I will definitely be getting “Make Good Blood” tattooed on me (once I am back to full health).