The first procedure
The morning of September 9, 2005 I was taken to have a spinal tap done. a few hours later Dr Quack came in and said that I had elevated proteins in my spinal fluid which indicated that I had GBS. I asked what GBS was and he just gave me vague answers. Like your immune system is out of whack and is attacking your nervous system which is making you so weak. We are going to do plasma pheresis (or plasma exchange as some of you know it) (My family called it an oil change.) He and the nurses assured me that I would have a full recovery in 3 weeks and could go back to work in 2 weeks. I thought COOL! FULL RECOVERY in 3 weeks, awesome. I had just started to date this great guy and if there was a chance at a full recovery I had a chance at him. (wink wink)
That after noon (this was a Friday) Dr. Dork, a surgeon, came by my room to tell me that he would be putting a central line in my neck in the morning (Saturday) for the plasma pheresis team to run the treatment. He said he would be knocking me out and placing the tubing into my jugular vein and then feeding it down, to God knows where because he kind of lost me. But my mom and dad were there and listening so I just figured I'd ask them what he said. But before he left he laughed and said if we needed him he would be at the holiday inn up the road learning the procedure before he did it on me in the morning for the first time and that he promised he wouldn't drink...much.
Now don't get me wrong I love when a doctor can have a sense of humor but there is a time and place for all that. That was not the time nor the place! My dad was PISSED to say the least. But Dr Dork was the only surgeon on call that weekend and my treatment needed to get started ASAP.
So the next morning I was taken down to the OR and one of my BFF's was there, Laura, or as I call her Peach. She was my rock. I was scared I didn't know what to expect except that when I woke up I would look like a monster from Buffy, with a tube sticking out of my neck! But it was comforting that Peach was the last person I saw as I was wheeled into the OR. My parents had planned on being there but the surgery got moved up by 30 minutes but they were there when I came out. All 3 of them beaming smiles at me with tears in their eyes. But that could have been the drugs I was on!
Dr. Dork came by my room about an hour later and assured us that all went perfectly and that the line was functioning perfectly and that Florida Blood Services would be in an a few hours to do the first procedure. We all thanked him and he left us to visit. All the equipment had arrived from FBS and was packed into my tiny room and my dad is uncomfortable with hospitals and decided to go get a bite to eat or something. Mom and Peach stayed with me. A few hours later the nurse from FBS came in and explained the procedure to us.
They hook 2 lines into your tubing and one line suctions blood out of your body and runs it through a centrifuge that separates the components of your blood and removes the antibodies that are reacting and causing the problems. Then they mix Albumin (a blood product) back with the blood they took out and replace it back into your body. (this is why we called it an "oil change") We were starting with 5 bottles of albumin per treatment and the treatments would be every other day for 8 days. She said that she had seen many cases of GBS and they all made full recoveries with in a few weeks to a few months. I was VERY happy with that. So as she got me hooked up to the machine she noticed that the line Dr Dork had put in was not the typical line that was used for the procedure! (He wasn't kidding he didn't know what he was doing) But I think that nurse's name was Kathy and she tried her best to get it working but when she turned the machine on it did not work. It wasn't the machine it was the line he put in. So she had to get orders for him to replace the line and then come back the next day to try again. I was disappointed that we couldn't get it started that meant more days in the hospital for me.
The next morning Peach was again the last person I saw when I went down to the OR and mom and dad were there when I woke up. I remember asking the nurse why my throat hurt and she nonchalantly says "oh, you had trouble breathing so we had to intibate you." Like it was nothing. But apparently it was something because they kept a close watch on me for hours after that but I never found out what happened, which is probably a good thing. The next nurse from FBS was named Judy, she was awesome (but I'll get into that in a later post) She got me hooked up and started the machine and it ran with no problems...except that it kept throwing blood clots. It wasn't the machine it was me. From the added stress of a foreign body in an already immuno compromised body is pretty much a guarantee that blood is going to form around that foreign body and cause clots. She mentioned it to Dr Quack when he stopped by after church that afternoon and told him I should be on lovonox shots during the treatments. He disagreed and said that the treatment actually removed my clotting factors and that I should be watched for bleeding risks. She showed him the clots in the bag that collected the antibodies that were pulled out of my body but he was not concerned. She was livid because she had been doing these treatments for over 20 years and had seen this kind of thing before but he was the Dr. and she was the nurse so who do you think won that argument?
Let me tell ya, If you ever have to have plasma exchange, stock up on hard candy. The albumin tastes horrible going through a central line and you taste it the entire time the machine is running. I ate lifesavers by the bag!
Ok y'all, time for me to get some sleep, I didn't sleep well last night and I was up early again today for my IVIG treatment then my Dr apointment after that and have another IV early tomorrow.
That after noon (this was a Friday) Dr. Dork, a surgeon, came by my room to tell me that he would be putting a central line in my neck in the morning (Saturday) for the plasma pheresis team to run the treatment. He said he would be knocking me out and placing the tubing into my jugular vein and then feeding it down, to God knows where because he kind of lost me. But my mom and dad were there and listening so I just figured I'd ask them what he said. But before he left he laughed and said if we needed him he would be at the holiday inn up the road learning the procedure before he did it on me in the morning for the first time and that he promised he wouldn't drink...much.
Now don't get me wrong I love when a doctor can have a sense of humor but there is a time and place for all that. That was not the time nor the place! My dad was PISSED to say the least. But Dr Dork was the only surgeon on call that weekend and my treatment needed to get started ASAP.
So the next morning I was taken down to the OR and one of my BFF's was there, Laura, or as I call her Peach. She was my rock. I was scared I didn't know what to expect except that when I woke up I would look like a monster from Buffy, with a tube sticking out of my neck! But it was comforting that Peach was the last person I saw as I was wheeled into the OR. My parents had planned on being there but the surgery got moved up by 30 minutes but they were there when I came out. All 3 of them beaming smiles at me with tears in their eyes. But that could have been the drugs I was on!
Dr. Dork came by my room about an hour later and assured us that all went perfectly and that the line was functioning perfectly and that Florida Blood Services would be in an a few hours to do the first procedure. We all thanked him and he left us to visit. All the equipment had arrived from FBS and was packed into my tiny room and my dad is uncomfortable with hospitals and decided to go get a bite to eat or something. Mom and Peach stayed with me. A few hours later the nurse from FBS came in and explained the procedure to us.
They hook 2 lines into your tubing and one line suctions blood out of your body and runs it through a centrifuge that separates the components of your blood and removes the antibodies that are reacting and causing the problems. Then they mix Albumin (a blood product) back with the blood they took out and replace it back into your body. (this is why we called it an "oil change") We were starting with 5 bottles of albumin per treatment and the treatments would be every other day for 8 days. She said that she had seen many cases of GBS and they all made full recoveries with in a few weeks to a few months. I was VERY happy with that. So as she got me hooked up to the machine she noticed that the line Dr Dork had put in was not the typical line that was used for the procedure! (He wasn't kidding he didn't know what he was doing) But I think that nurse's name was Kathy and she tried her best to get it working but when she turned the machine on it did not work. It wasn't the machine it was the line he put in. So she had to get orders for him to replace the line and then come back the next day to try again. I was disappointed that we couldn't get it started that meant more days in the hospital for me.
The next morning Peach was again the last person I saw when I went down to the OR and mom and dad were there when I woke up. I remember asking the nurse why my throat hurt and she nonchalantly says "oh, you had trouble breathing so we had to intibate you." Like it was nothing. But apparently it was something because they kept a close watch on me for hours after that but I never found out what happened, which is probably a good thing. The next nurse from FBS was named Judy, she was awesome (but I'll get into that in a later post) She got me hooked up and started the machine and it ran with no problems...except that it kept throwing blood clots. It wasn't the machine it was me. From the added stress of a foreign body in an already immuno compromised body is pretty much a guarantee that blood is going to form around that foreign body and cause clots. She mentioned it to Dr Quack when he stopped by after church that afternoon and told him I should be on lovonox shots during the treatments. He disagreed and said that the treatment actually removed my clotting factors and that I should be watched for bleeding risks. She showed him the clots in the bag that collected the antibodies that were pulled out of my body but he was not concerned. She was livid because she had been doing these treatments for over 20 years and had seen this kind of thing before but he was the Dr. and she was the nurse so who do you think won that argument?
Let me tell ya, If you ever have to have plasma exchange, stock up on hard candy. The albumin tastes horrible going through a central line and you taste it the entire time the machine is running. I ate lifesavers by the bag!
Ok y'all, time for me to get some sleep, I didn't sleep well last night and I was up early again today for my IVIG treatment then my Dr apointment after that and have another IV early tomorrow.
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