February 21,2011

We have an appointment with Dr.Reiger because the hospital wanted a follow up with the PCP after the hospital stay.  SO we had a chance to chat with him again about the ITP and everything that was going on.  We discussed the possibility of the spleenectemy and maybe having a gastric bypass done at the same time. He thought it would be a great idea but it would be something to talk about with the surgeon as he wasn't sure if they do a two for one!!!  He also did some blood work to check my thyroid, which turned out fine. 

February 22,2011

We have our first appointment with Dr.S(extremely long name that I cant pronounce) at the Hickory Hills office.  She was the nicest Dr I have ever met!!  She came in and had already knew everything about me and had talked with Dr.Michaelis and everything.  She said she was going to monitor me and help me get off the Prednisone.  She ordered some blood work and we were off.  The blood test results for her came back and i have a Vitamin D deficiency so she put me on this super vitamin that I take on Sundays for the next ten weeks and then I will see her again!!!  In the meantime I am to take 1000iu of Vitamin D daily and 1200iu of Calcium daily, I try to remember but the second dose in the pm I allwayz forget!!!

So for now things seem to be OK, my count was at a good level I'm getting the Prednisone down I think I was at like 80mg daily here!!  My body was still not real good but I was being positive that we were on our way up!!!  That weekend Steve and I had a little tiff and I was real angry with him and decided I didn't want to talk to him anymore.  Sunday night I wasn't feeling real good, actually for the first time since having ITP I was COLD!!!!  I had on two blankets and I was still freezing!!  I had mom take my temp and it was fine i tried to sleep as much as I could and drifted off. 

February 28,2011

I was set to go in for a blood draw today but since I woke up and felt like a crap I thought I would call and see if I could get an appointment, which is a joke since its a Monday!!!  Mom took my temp and I was 100.1, not bad but a temp no doubt.  They said to just come down and see the nurse to have my pulse-ox checked after my blood is checked.  OK so we go have the blood drawn and I go down and tell them whats up.  Karen one of the other doctors which is funny that I only know her first name, has me sit in this chair and the nurse takes my vitals.  Karen tells me if your pulse-ox is low we are going have to admit you.   While we are waiting to get a reading on that down the hall comes Dr.Michaelis with not a good look on her face.  So I ask did you get my count yet?  She said yeah 32,000 I said fuck!!!  Then I said pardon my language but geez what happened?  Shes just perplexed and says I think we HAVE to do Rituxin again!!  Karen tells her my pulse-ox is at 93 she says fuck!!!  We all had a  little laugh and she has Karen walk me around that hall to see if it gets any better or any worse by walking.  So we go down and around the hall and we end up back by Dr.Michaelis office and she tells me you know we need to take care of this ITP before something else kills you!!!!  They decide my oxygen level was going to be OK but I needed to come back tomorrow and have the Rituxin!!  OK I guess because now you've thrown the you could die at me so fine if you think its safe ill try it!!!

So now I have had ITP for just about two months, I'm familiar with the illness and getting used to getting blood drawn all the time.  Now that we tried Rituxin and had the reaction to it we are back on the spleenectemy route!!!  Oh boy!!  I spent a lot of time on the pdsa website and researched other drugs.  My doctor didn't seem like she wanted to try any other drugs, not quite sure why either!  However one thing was clear we were NOT going to try Rituxin again!!  Steve was dead set against it, there was no way at all we were going to go thru that again!! 

February 16,2011

I see Dr.Michaelis and my count was 259,000 so apparently some of the Rituxin got in and helped my count go up.  In the mean time lets keep dropping the Prednisone and see what happens.  Maybe if the count doesn't crash we can hold off on doing anything!!!  Great news this is what I was hoping for.  We also discussed that she did some research of her own and found that there is a safe way for her to give me the Rituxin again if need be.  I told her I really wasn't sure that I felt comfortable with that, but if need be I would think about it.  We were on our way with a few days off from seeing doctors and getting blood drawn!  However she did refer me to an endocrinologist to help with getting off the steroids. 

I did some research on Rituxin and decided even though there were risks they were small and I felt that since I would be in the hospital at the cancer center i would be OK.  I had read stories on the pdsa website and most people said they just slept thru there treatments.  So I decided Thursday night that I was going to stay up as late as I could so that I would be tired the next day.  I had no problem doing this since I had the whole weeks worth of OLTL to catch up on anyway!!  And after watching four hours of soaps it was about 4am and I still couldn't sleep!!  I tossed and turned and before I even felt like I slept at all my alarm went off!!  We got up and were on our way for the first treatment of Rituxin.  We got there at about 8:30 and waited for them to call the doctor up to explain what was going to happen.  Finally at about 10:30 did we get started, I posted on facebook that I was nervous but ready to get going.  They gave me two capsules of Benedryl and two Tylenol and then started an IV.  The first hour went by and it was fine, I even posted on facebook that it was fine.  They came in and turned up the pace on the IV drip.  I decided that since I stayed up most of last night that I was tired and I was going to try and sleep.  I laid the bed back some, took my glasses off and got comfortable.  Within 10 minutes I started to cough, so I put the bed up some thinking maybe I just needed to be more upright.  But then I looked mom and told her I feel like I have a wheez all of a sudden.  The nurse who was just outside our curtain heard me talking and came in.  And I told her yeah I feel like I cant catch my breath, and that was it from there I just kept saying I cant draw in a big breath.  She stopped the IV drip and began injecting my IV with all kinds of things.  In the meantime I'm like trying real hard to stay clam and to get a breath in.  They brought me oxygen tubes but I'm not a nose breather I told her I cant breath out of my nose at all so this is not helping me!!!  She had the epi pen in her hand and looked at me and said to the other nurse where do I get her at she is dressed and the nurse said go right thru her pants it will go thru and then comes and jabs me in the leg with it!  Now that was scary!!  Finally someone gets a mask and I have oxygen that I can actually breath in!!  And then the paramedics come and they load me up and as we are leaving the day hospital I'm worried that my mom is going to get lost from me so I'm yelling to her to stay caught up with us, cause I don't know where we are going!!!  Then I realize we are going outside to an ambulance? Why aren't we already at the hospital?  Well we were at the Cancer center and since I went into Respiratory Arrest I had to go the ER in the hospital building at the end of the lot!!!  Once in the ER I was breathing pretty good.  However we were told that I would most likely be admitted for observation.  OK now time for damage control because you know while I couldn't breath Mom was freaking out and calling everyone and freaking them out too!!  Steve was working at the auto show and even was going to leave work right away.  I called him first and told him I was OK and that I would probably be sleeping over at the hospital but that there was no reason for him to rush over.  While in the ER we saw a doctor who told me that 80% of the people who have this reaction die a sudden death!!  OH MY GOD!!!!!!!!! OK now I'm scared!  Even more scared then I was when I couldn't breath!!  OK so I get brought upstairs to my room which oh by the way was just across the hall and over one from Ellen, who had been admitted on Thursday.  Unfortunately Loyola is not the resort that LaGrange is so i did have a roommate.  She was OK and did not really bother me.  At some point I think a Dr came and talked to me and said that they were just keeping me to make sure I was going to be OK.  I had a heart monitor on and they checked my pulseox when they checked my vitals.  Steve came with Dad and brought me McDonalds because I think dinner was like something that looked like dog food!!!  They all left at around 8:30 and I decided to try and sleep!  It worked for a bit I woke up feeling like awesome I got some sleep in nah it was only 12:30.  I got up went to the bathroom and tried again.  About an hour later my roommates IV monitor started to beep, I think she was a hard sleeper because she never got up to call the nurse.  I know now that I should have called for her but I kept waiting and waiting for them to come in!  It seriously seemed like an hour and a half before they came in.  And when they did I heard the nurse say oh my your iv is out.  Now its like 3am and we got to have the lights turned up because they are restarting her IV!!!  Oh geezmeds and said I was going to go home as soon as my papers came up.  So she took the IV out.  About noon we were on our way out of there!!!