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Wednesday, February 29, 2012

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.

Monday, February 27, 2012


Before I get into the diagnosis I MUST tell you about the funniest time I fell, it wasn't funny at the time but looking back it had to be spectacular.

I had resorted to taking my book and purse to my car in the morning and going back into the house for my lunch and drink because it was too much to carry them all at the same time. So I was going back up the stairs of the deck (which had no rails) and my legs gave way and I took a nose dive off the edge of the deck and did a face plant into the dirt! I had on a skirt which was now over my head, my underwear got caught on the box hedge, my shirt had slid up over my chest and my face was about 6 inches from a fire ant hill! OMG what a sight I had to have been. I rolled over, adjusted my clothes and laid on the ground fuming, I knew I couldn't get up and I knew nothing was broken. No one was home and my cell phone was in my purse in the car 50 feet from me. Luckily the man who lived across the street was out walking his dog and found me on the ground. He asked me if he could help but, he was disabled and I knew he couldn't help get me up, I had no strength to help I asked him to get my phone out of my purse so I could call someone to help. He was nice enough to stay with me until help could get there and also to NEVER MENTION it again! He passed away 2 years ago, God bless him, he was a kind man.

So on to my diagnosis.
I had gone to the ER and been told to go to chiropractor. (been there done that with no improvement) I called my primary and he was booked but I could see his nurse practitioner. I went in that afternoon. I told her my story, she checked my reflexes and I had none, the look on her face kinda worried me but not real bad. She left the room and came back in with my primary who asked some questions and checked my reflexes again, he hit me hard enough to bruise me, still nothing. He told me he wanted me to have an MRI and see a neurologist. I asked him what he thought it was and he told me he thought it was either MS or Guillian Barre Syndrome. I had heard of MS and knew I didn't want it to be that but I had no idea what GBS was. He told me we would cross that bridge when we got there. So they made the MRI appointment for the next day and the neurologist appointment for the day after that. I wasn't happy with the choice of neurologist but he was the only one who could work me in. (I'll just call him Dr. Quack)

I had my MRI and went to see Dr. Quack. He listened to me and immediately ruled out MS. He told me it was GBS but wanted a "lumbar puncture" to be sure. (lumbar puncture = nice way to say spinal tap) He admitted me to the hospital that day and the spinal tap was scheduled for the next day. GBS still wasn't really explained to me just that we had caught it early enough and that I would make a full recovery. I was so thankful and weak and tired I just didn't question anymore.

The next morning I called my brother and asked him to bring me some chapstick before he went into work. He got there just as I was being wheeled down for the spinal tap. He handed me the chapstick and I COULD NOT get the cap off. I saw my brother's heart break at that moment. I've always looked up to him and that's when how sick I was truly started to sink in. Also how much he loved me hit me and I started to cry. He took the cap off and put the chapstick on for me then gave me a hug and kiss, told me he loved me and left for work. He called our mom and told her how pitiful I was and made sure she was on her way to be with me.

Ok, pain set in again, got to stop here for now.

Monday, February 20, 2012

The fall of mid summer

In May of 2005 I was a healthy happy 30 year old. Single with no kids, my life was great, maybe that was the real trigger! I got the flu some time in mid May, don't remember the exact dates, just being sick and deluding myself into thinking it was just "my allergies". 4th of July weekend I went to visit a friend for the weekend. We went to a local race track on Saturday night to watch the races and fireworks. At some point that night I was walking along a row of bleachers and twisted my ankle and fell. (Yeah I looked like a sloppy drunk, but I don't drink.) I thought nothing of it because I'm a klutz. I also got the flu again that weekend.

Then in mid August I fell in the parking lot at work. I wore heels every day to work and, again... I'm a klutz. So I thought nothing of my falling other than me being me. When I fell I went down on my right knee and the palms of my hands. My hands were a little red but I just brushed them off and got in my car to go pick up lunch. When I got back to the office I was standing in the breakroom when a co-worker said "Cheryl!" I turned and said "What?" she says "You're bleeding" I said "No I'm not, where?" she says "Your leg". So I looked down and sure enough there was a trail of blood down my leg and drops on the floor. I had cut my knee when I fell, but I didn't feel it. Looking back, that should have been a clue that there may be something wrong with me, but at the time it was just inconvenient that I had to clean blood off myself and the floor in the breakroom. I cleaned myself up and went on with my day, I had a lot of work to do after all.

The next few days my knee was sore which is normal but it started to get hard for me to get up from a chair. I just assumed it was my bummed knee and used my arms to give myself an extra push up. My finger tips started tingling one morning and I just thought it was because I had slept wrong and they were just asleep. My arms were aching and I just figured it was because I had to use them more to get up from a chair. Then I had trouble opening a bottle of Mountain Dew (my holy water at the time) again, it was just because of the extra strain on my arms and the tingling in my fingers. My co-workers convinced me to go to a chiropractor because we figured that I had pinched a nerve when I fell.

So to the chiropractor I went. x-rays were done and yup, sure enough pinched nerve. Just ice it and come back 3 times a week for the next 6 months and all will be well. I had previously been to this doctor's now retired business partner so I had no reason not to trust him. Well in the two weeks that I went to see him I continued to get weaker and weaker. I fell at least 3 more times and the last 2 I had to have help getting up. Then one fateful morning I had gotten up to go to the bathroom and couldn't get up off the toilet. Now that's bad enough in itself but since I was single and living with my brother I had to yell for him to come help me off the toilet. (que humiliation NOW) He drove me to the ER and called our mom to come stay with me, he had to go to work. I explained to the doctors in the ER how I had been getting weaker and weaker, how I had to lean against the wall and use both hands to brush my hair and teeth. How I couldn't wear a bra because I couldn't hook it, or how I couldn't zip my jeans. (All things I had told the chiropractor and he said I just needed time to heal) The ER doctor put a neck brace on me and told me to go to the chiropractor.

    Ok, sorry but the pain is bad again so I have to stop this post here. I will pick up where I left off in my next post.

Saturday, February 18, 2012

My history

I should have started this blog years ago but I just had too much going on. As anyone with a chronic illness will tell you, keep a journal because it helps. I didn't, so now its going to take me days if not weeks to post my history up till now. I am currently 37 and I became sick at 30 so I've got lots to say.

I have CIDP, Chronic Inflammatory Demyelinating Polyneuropathy. It is an auto-immune disease (or disorder, depending who you talk to) My immune system attacks the meylin sheath that coats the nerves and then my brain can't send the proper signals to my muscles to move. Oh, and it hurts like hell. When your brain can't send signals you become extremely weak, and it hurts. If I don't get treatment I get so weak that I am paralyzed from head to toe...and it HURTS. Some people have to be placed on a vent in order to breathe but I have not gotten that bad. Some people just get a little weak but most need walkers at the very least.

Ok, so that pain I talked about, well its getting really bad right now so I will stop here for now.