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!!!

Our first time at the Cardinal Bernadine Cancer Center was a little intimidating at first.  We had the guy park the car and we went downstairs to Clinic E, thanks to Ellen for the directions we knew exactly where to go!!  I checked in and then the waiting began!!  I think it was probably only a half hour before we were called in, it just seemed like forever!!!  The nurse checks my vitals and asks all the questions and says OK doctor will be here in a bit.  Doctor comes in nice to meet you and all that jazz lets get down to business.  OK you have ITP it means this and this and this she explains away also drawing a diagram on a piece of blank paper.  This was so great I mean I had already done so much of my own research that I knew how ITP works but it was great to see a Dr draw it out for me!!  So then she started writing down how we treat it.  She wrote a few things before she got to spleenectemy.  She said she didn't know why the other Dr was ready for that already.  She said at this point she wanted to try and lower me off the steroids because you could tell how it was effecting me.  I think my weight was about 320 then.  She told me to lower the Prednisone down to 80mg daily and to have blood work done at the Darien office in one week and to see her on Monday the 31st. 

From this point on I don't have exact counts anymore as I will strictly be working from memory, everything prior to this I have the records of!!  So I am not sure what my first official count was at the new Hematologist office.  But we were on our way to try and get off the Prednisone and to prevent from having surgery. So we started the great Prednisone taper she decided that I could go down 20mg every third day.  I have to mention at this point when I saw her on the 31st my arms,legs and back were so achy and I couldn't stand for more then five minutes or walk further then 10 feet.  They decided that I needed a blood test to make sure I didn't have myotitis, not sure on the spelling of that either, but that I most likely have myopathy from the steroid's. Myopathy is a weakness in the muscles, now I'm already a heavy women so I dont have real strong muscles to begin with and at this point I gained 20 more pounds so you can imagine how my muscles must be feeling!!! The test came back OK and they decided that its just myopathy and she hoped that it would clear up after we get off the Prednisone.  So we are on the taper and the platelet numbers begin to decrease.  So the doctor wants to try and give me Rituxin before I get sick again.  OK now for any of you that don't know, Rituxin is a Chemotherapy Drug that is made of mouse particles.  It has been found that most people have respiratory problems when receiving this treatment. There is a small chance that you could have a bad reaction from this medicine and you could die. Wow why would I want to take Chemo drugs? I don't have cancer I'm not going to die and I don't think I really want to try this stuff out!!  Well the doctor says if your count keeps going down we have to do something!  She gave me a referral to a surgeon  and said get a consult appointment with him.  And think about the Rituxin and we will see what your count is today.  This being Monday February 2.  Well the count was not OK I'm not sure what it was but she decided that we needed to go forward with the Rituxin on Friday. 

Our first meeting with Dr.Brent Reiger was more then expected!!  He came in and I told him I was diagnosed with ITP and he seemed to know what I was talking about and everything.  We spent a lot of time talking about my current medical problem and the side effects.  At this point I think I was up to 320 with my face starting swell ALOT!!!! Also my blood pressure was real high as well as my pulse rate.  He said that these things were concerning but there was no way to say for sure they weren't from the Prednisone.  He was happy that we were there and happy to answer any questions I had at any time and glad that I had the appointment for Friday with the Hematologist.  Also last count that was taken by the Access doctor was 140,000 still on 100mg daily of Prednisone since I hadn't seen the Hematologist. In between this visit and the visit with the new dr I did have my final blood draw at LaGrange Hospital and my count was 350,000 the highest its ever been!!

First thing in the morning I head to Dr. Hartings office for a blood draw, my count was 75,000 I was allowed to drop to 100mg daily of the Prednisone. Mom and I head out to summit to the access office for a 2:00 appointment, we get there and the waiting room is packed!!  Mom is like are you sure you want to be here?  Yeah lets check it out its not so bad!!!  LOL!!!!  At about 3:00 we get called in to the back.  The girl takes my vitals and we are waiting again!  We get a knock on the door and this is funny because its not the doctor its the guy from quality control or something like that he has a survey for us to fill out!!!! One of the questions is about how long you have waited, too funny!!!  Anyway we met the Dr who is not actually a Dr shes a nurse practitioner which OK with me too, I explained to her what I knew so far about my condition and gave her copies of my two latest blood tests.  I explained to her my situation with having no insurance and wanting to have a doctor to manage my health care.  She said great and that she could be that person for me.  At this point she took a look at my blood test results that I gave her and she told me she was concerned that my WBC count was too high.  She asked me to come back in a few days and have blood work done for her. She had said that if the WBC count got any higher she would want to admit me so she could have better observation.  We talked about the spleenectemy and she said that she too knew that was next in line to treat ITP, but I should talk to the Hematologist more about that.  She said that they worked with other hospitals in the area that would take uninsured patients on a sliding scale so if need be we could have surgery at one of those hospitals.  So we left at about 4:30 and we were on our way loaded with a whole new worry.

That night we decided to have a family meeting, consisting of myself, Steve, Mom, Dad, and Colleen.  Mom and I spent most of the time explaining to the rest of them what it is that is wrong with me, which really we were still not all that sure!!!  And then the decision of what should we do next and where should the priority lay, in the money or the treatment?  So we discussed the spleenectemy and how we would take care of Caley if I had to have surgery.  We also discussed again maybe going down to Stroger and getting treated there.  And of coarse the possibility of just going with the current doctors and figuring out how to pay for it later.  In the end we decided that the first thing to do would be to go to the DHS and apply for Medicaid.  So the next  morning mom and I went down to Melrose Park.  Now at this point I have been on high doses of Prednisone, which for those of you that don't know is a steroid.    The side effects had started my legs were feeling real heavy and I could not stand for long periods of time.  I waited in line at the DHS office for about 15 minutes feeling like I was going to die if I didn't get to sit down soon!!  Finally it was my turn and I told the women at the desk that I wanted to reapply for Medicaid she took my info and told me to have a seat.  It was pretty crowded there too so I thought oh boy we are in for a long haul!!!  I sat down and called Steve to chit chat and to let him know we just got there and sure enough my name was called!!  I went in saw my caseworker told her the jist of what was happening and she said no problem I will put you back on,  I also asked her about my hospitalization in December and she said that it could be back dated no problem!!!  Sweet!!  This is the best thing I have heard all year!!!!  I walked out and mom was like we are done already really????  And I was like yeah I cant believe it myself but we are done and I'm taking care of!!! 

I want to back up a bit and say when I was looking for other doctors for a second opinion I had many options.  Loris mom who those of you that know her know that she has a bleeding disorder herself, refereed me to her doctor at Loyola.  Also Lauren Wollenberg refereed me to her doctor at the University of Chicago.  I did a little research on my own of the Loyola doctors and I had found one that I liked and it said she specialized in ITP.  I was thankful for the recommendations of my friends but decided that I wanted to try and go with this doctor.  However when I called Loyola I decided that I just wanted them to get me in with the first Hematologist that I could see, because at this point I wasn't seeing any doctor at all.  I was told the last time I was at Dr. Hartings office that she couldn't continue to draw my blood anymore.  Obviously because they were absorbing all the cost for doing it for me and they did not want to continue doing it for free.  So i was told by the scheduler that she could get me in on Friday but I would have to go to Gotlieb Hospital, not sure how that's spelled, in Melrose Park.  I explained to her that would be OK if its just for the initial visit because this is a condition in which so far anyway I had been going three times a week.  She said let me email the doctors and I'll see if I can get you in sooner, Ill call you back.  OK in the meantime the next day I was to go to the Access office and have blood drawn there to see what my count was, and hope that she wasn't going to send me to the hospital.  I decided to follow up with her even though we had gotten the medical card and I decided I was going to go to Loyola, mostly just because I already had the appointment and I wanted to get a count.  I got a call back from Loyola telling me that Dr.Michaelis had an opening for me on the 21st.  Who would have thought the Dr that I researched and picked out had an opening for me!!!!!  While I had the scheduler on the phone I asked for a PCP so she found me one that works out of the Darien location and gave me an appointment with him on Wednesday morning. 

The last two days I started to get sick.  I was having a hard time breathing and in general I just felt lousy!!  Well it turned out that was because I had the flu!!  My platelets had dropped to its all time lowest which was 6,000.  Dr. Harting sent me to the ER where they did the flu test and confirmed that I did have the influenza virus.  Also while there I had a chest xray and an EKG.  I asked if I was going to be admitted and they were not sure yet.  I told them I will rest a lot better at home then I will in the hospital so after talking it over with the Hematologist they sent me home.  However I am instructed to go back to the full dose of the 140mg of Prednisone!!! 

So now I have been taking Prednisone for about two and a half weeks and the side effects have begun, I gained 15 pounds at this point since 12-16-10 and boy did my moods swing!!!  The moon face didn't show up too bad YET!!!  But it was coming!!  After this episode with the flu Dr.Harting told me that I would have to have my spleen removed.  She said that it was the next thing that they did to treat the ITP and since my count was way down this is something we need to decide to do soon.  Once again I do not have insurance and have no clue how we are going to pay for this.  Not only that but surgery wait a minute I'm not sure I'm liking this!!  So I decided that we should get a second opinion or try to find a place where we can get on a sliding fee scale or something.  We were even thinking of going downtown and spending the day at Stroger Hospital to see if we could get in there.  I called around and had an appointment at Rush with a Hematologist there and was connected with the person who can help me get on the sliding scale!! Great!!  Just couldn't get in for about three weeks, not a real big deal at least I thought!!  In the meantime I was trying to figure out where to go to the doctor at you know for like a general praticioner.  So we got an appointment at this place called Access they are also a sliding scale. 

 Monday morning I go in to Dr. Hartings office for a blood draw, this is routine now and I am taking myself and not passing out!!!  I have to say by this time fear isn't even a factor anymore, you see because this is an oncologists office that I am going to have this done.  I'm sitting in the chemo room while all these people are getting treatment for there cancers and I'm just getting a little blood taken!  So I got over being scared real quick!!!  My count had dropped down to 59,000 however Dr. Harting was out of town so her replacement said to stay at the 60mg of Prednisone and come back on Wednesday for another draw.