Wednesday, March 11th I woke up with a really bad pain in my right side and for some reason decided to look in the mirror to see if there was anything in that general area. There were a few red spots one bigger red spot. The only thought I had was maybe I had burnt myself with my heating pad but that is not what it really looked like. The pain in my side wasn't too intense just enough to annoy me when I moved around. I promised everyone that if it got worse I would think about doing something.
Around 2ish I started to feel considerably worse. I noticed that I had more red spots all over my stomach. There were much smaller then what I had on my side but still there. My body does really weird things some times so unless it was truly effecting me I was not planning on doing anything, just watching. However, around 3:30 I looked at my legs and there were more red spots. Well, because they were on my legs I panicked. Here's why: about 6 years ago, I had a weird rash on my legs and was feeling weird so I went to the doctor. They did some blood work, sent me home then called me within an hour and told me I was being admitted to the hospital. My platelet count was so far down that they were concerned of me bleeding out randomly. I was hospitalized and given steroids for a few days then sent home to continue. My platelet count stayed up for a few months then dropped again, I had more steroids and two weeks later my platelet count dropped again, one more round of steroids but this time my count dropped within a week. My next option was Rituxan. It is a type of chemo medication - from what I understand it is on the very lowest end of the scale. So low that I was not even told until that had started it that it was chemo. They were very hopeful that this medicine would work and it did for 6 years.
As soon as I saw the rash on my legs I called my sister who had gone to see my mother to tell her to come back. Then I called my doctor, I talked to a nurse who told me that she did not have any
appointments that afternoon and that I should call my hematologist to inform them what was going on but that I should definitely go to the ER. I called my hematologist and got a nurse who said she would call me back in ten minutes. I called Tyrone and asked him to come home early so he could take me to the ER. While I waited I packed a backpack with snacks, a book, chargers, and a sweat shirt. I was trying my best to think positively but with the spots on my legs I just knew it was my platelets and knew I was going to be admitted.
Fast forward to Tyrone and I getting to the ER and it being PACKED. The wait was roughly 4-6 hours with a could be more tacked on to that. we had been waiting for about two hours when one of the triage nurses came out and started asking people who had already been registered to come back to triage. They had decided to start at the bottom of the list and get urine and blood samples to attempt to speed things along. When she called my name she just asked for a urine sample, I told her I was highly concerned about my platelet count and that I have had troubles in the past. So she was like 'well good thing I am in charge of adding that to the list.' She took me back and took a blood sample. They put an IV in and said that if there was some sort of problem I would be called back quicker this way. Well, 40 minutes or so later I was wheeled back. While I was being wheeled back the nurse said that they were most likely going to admit me because my platelet count was so low. How low? Below 10,000. Great! The one thing I remember from years ago was it needed to be around 250,000. Last time it was 11,000 this time it was so low they couldn't count it. I was told I was getting a CT scan on my stomach (where my pain was) and my head. They were concerned about my brain bleeding since I have been having abnormal headaches with a lot of dizziness. The CT scan didn't happen for hours because there were a few really bad trauma's that came through. Do you know how hard it is waiting to see if you are bleeding out in your brain? Nice and terrifying.
Once they did the CT scan I got the results pretty quickly, which told me that I had no random bleeding, thank God, but I did have swollen lymph nodes around my colon which is right around where my pain was. They had no explanation for this but at least it was not bleeding. I was admitted but there was not a room for me so I had to wait in the ER until there was one. I was in the ER until like 1pm on Thursday March 12th. Meanwhile, while I was in the ER they had started a round of steroids. They checked my blood again once I was up on my floor but there had been no change. With no change and more and bigger spots showing up/spreading they were concerned that the platelets were not going up fast enough with just the steroids. The spots are called a petechial rash which "are pinpoint, round spots that appear on the skin as a result of bleeding under the skin." In other words I was 'leaking' blood into my skin. Frustrating and scary if you really think about it. Anyway, because there was not enough change between 2am when I got the steroids and 2pm when they checked it again, they decided that maybe steroids were not the way to go this time. They decided on a platelet transfusion and a shot of RhoGAM then a little while after that I would start the Rituxan treatment.
I was feeling very uneasy about the platelet transfusion just because I hadn't had one before, thank
goodness Tyrone and Haleigh were here. They both reassured me I would be okay and that this would help. The platelets didn't take too long to go through maybe an hour or so. I felt okay afterwards. Then they gave me the RhoGAM shot. This shot is done over a 3-5 minute period. Here's what Drugs.com says "Rho(D) immune globulin is a sterilized solution made from human blood. Rh is a substance that most people have in their blood (Rh positive) but some people don't (Rh negative). A person who is Rh negative can be exposed to Rh positive blood through a mismatched blood transfusion or during pregnancy when the baby has the opposite blood type. When this exposure happens, the Rh negative blood will respond by making antibodies that will try to destroy the Rh positive blood cells. This can cause medical problems such as anemia (loss of red blood cells), kidney failure, or shock.
Rho(D) IG is used to prevent an immune response to Rh positive blood in people with an Rh negative blood type. Rho(D) IG may also be used in the treatment of immune thrombocytopenic purpura (ITP)." So, they gave me this medicine in hopes that it would help me stop fighting my own platelets along with the platelets I was receiving. This made me feel really gross. I could not pin point what exactly felt weird just that I all of a sudden felt crappy. After I had the last of the medicine Tyrone and Haleigh kissed me goodnight and I went to sleep. They took my blood sometime during the night and I got the results in the morning.
Friday, March 13th I got the news that my platelet count was FINALLY able to measured! 13,000! Still not high but it was measurable so that is a big improvement. I was given more steroids, which by the way turn me red and make me hot and gross, in preparation for my Rituxan treatment.
They started the Rituxan around 10:30 and I was doing pretty good. They start you off slow then work your way up. As it was pushed up though I started having a reaction. My throat, head, ears were really itchy. I felt like I had been playing with cats. I started sneezing and was so itchy. So they had to stop it and give me a shot of Benadryl. I had already received one pill so this was just another dose. After a little bit all my itchiness went away so they started it off again slow. This is when Grandma showed up and sat and held my hand. I slept most of the time because I had then had two doses of Benadryl and was super sleepy. About thirty minutes after they started again I called the nurse in because my left hand felt really restless. It kind of felt like restless leg syndrome in my hand. I felt like I just had to move my hand like it had a twitch that I had to shake out. It was so uncomfortable! They stopped the medicine AGAIN (UGH!) and ended up giving me some Ativan to calm my nerves because that's been known to help with restless leg syndrome. After they stopped the Rituxan the weird arm thing stopped thank goodness. So on top of the bendaryl, I got the Ativan which knocked me out. However, I handled the rest of the Rituxan well. At some point Grandma left. After the Rituxan was done they
did another blood draw and my platelets were up to 26,000. Woohoo!! This was great news! The rest of the day was just spent hanging out waiting on Tyrone and Haleigh to get here. Once they got here we hung out a bit then Sami came with yarn, chocolate and pistachios! yum! She also braided my hair which made me feel so much more human! The rest of the night was just spent hanging out with Tyrone and Haleigh. There is not much that the nurses need to do with me so it is usually quiet in between meds and blood draws. I am so glad that my family lives so close by!
So after Tyrone and Haleigh left (way late! Haleigh's bed time has gone to the wayside since all this hospital stuff started) I played on the computer my sister so generously let me borrow for the night which was fun. Then when I realized how much time I had wasted playing on the comp I went to sleep. Last night I probably slept the best I have since this all started. Rituxan truly wears me out.
This morning, they did a blood draw and a little while later the main medical team came by to see me. They said they were sending me home today which is great news but that my platelets were 18,000. They did not seem too worried about the 'small drop' but I was, obviously. I know I'll have to go in to the cancer center every Friday for the Rituxan treatment for the next three weeks but I wanted to know if they were planning on checking my blood before then. If it has dropped off since last night I just worry it may drop again before Friday. They said they would talk to the hematologists to see what they said. I know the Rituxan takes a while to kick in, I just don't want it to drop down to 10 again, you know? While I've been waiting for them to say what is going on, I had some issues with a bloody nose but it stopped so they didn't seem too concerned. The plan as far as I know is for me to still be going home soon! I can't wait especially since Mom went home yesterday and I want to go see her!
I'll update when I can. :)
Around 2ish I started to feel considerably worse. I noticed that I had more red spots all over my stomach. There were much smaller then what I had on my side but still there. My body does really weird things some times so unless it was truly effecting me I was not planning on doing anything, just watching. However, around 3:30 I looked at my legs and there were more red spots. Well, because they were on my legs I panicked. Here's why: about 6 years ago, I had a weird rash on my legs and was feeling weird so I went to the doctor. They did some blood work, sent me home then called me within an hour and told me I was being admitted to the hospital. My platelet count was so far down that they were concerned of me bleeding out randomly. I was hospitalized and given steroids for a few days then sent home to continue. My platelet count stayed up for a few months then dropped again, I had more steroids and two weeks later my platelet count dropped again, one more round of steroids but this time my count dropped within a week. My next option was Rituxan. It is a type of chemo medication - from what I understand it is on the very lowest end of the scale. So low that I was not even told until that had started it that it was chemo. They were very hopeful that this medicine would work and it did for 6 years.
As soon as I saw the rash on my legs I called my sister who had gone to see my mother to tell her to come back. Then I called my doctor, I talked to a nurse who told me that she did not have any
Fast forward to Tyrone and I getting to the ER and it being PACKED. The wait was roughly 4-6 hours with a could be more tacked on to that. we had been waiting for about two hours when one of the triage nurses came out and started asking people who had already been registered to come back to triage. They had decided to start at the bottom of the list and get urine and blood samples to attempt to speed things along. When she called my name she just asked for a urine sample, I told her I was highly concerned about my platelet count and that I have had troubles in the past. So she was like 'well good thing I am in charge of adding that to the list.' She took me back and took a blood sample. They put an IV in and said that if there was some sort of problem I would be called back quicker this way. Well, 40 minutes or so later I was wheeled back. While I was being wheeled back the nurse said that they were most likely going to admit me because my platelet count was so low. How low? Below 10,000. Great! The one thing I remember from years ago was it needed to be around 250,000. Last time it was 11,000 this time it was so low they couldn't count it. I was told I was getting a CT scan on my stomach (where my pain was) and my head. They were concerned about my brain bleeding since I have been having abnormal headaches with a lot of dizziness. The CT scan didn't happen for hours because there were a few really bad trauma's that came through. Do you know how hard it is waiting to see if you are bleeding out in your brain? Nice and terrifying.
Once they did the CT scan I got the results pretty quickly, which told me that I had no random bleeding, thank God, but I did have swollen lymph nodes around my colon which is right around where my pain was. They had no explanation for this but at least it was not bleeding. I was admitted but there was not a room for me so I had to wait in the ER until there was one. I was in the ER until like 1pm on Thursday March 12th. Meanwhile, while I was in the ER they had started a round of steroids. They checked my blood again once I was up on my floor but there had been no change. With no change and more and bigger spots showing up/spreading they were concerned that the platelets were not going up fast enough with just the steroids. The spots are called a petechial rash which "are pinpoint, round spots that appear on the skin as a result of bleeding under the skin." In other words I was 'leaking' blood into my skin. Frustrating and scary if you really think about it. Anyway, because there was not enough change between 2am when I got the steroids and 2pm when they checked it again, they decided that maybe steroids were not the way to go this time. They decided on a platelet transfusion and a shot of RhoGAM then a little while after that I would start the Rituxan treatment.
I was feeling very uneasy about the platelet transfusion just because I hadn't had one before, thank
Rho(D) IG is used to prevent an immune response to Rh positive blood in people with an Rh negative blood type. Rho(D) IG may also be used in the treatment of immune thrombocytopenic purpura (ITP)." So, they gave me this medicine in hopes that it would help me stop fighting my own platelets along with the platelets I was receiving. This made me feel really gross. I could not pin point what exactly felt weird just that I all of a sudden felt crappy. After I had the last of the medicine Tyrone and Haleigh kissed me goodnight and I went to sleep. They took my blood sometime during the night and I got the results in the morning.
Friday, March 13th I got the news that my platelet count was FINALLY able to measured! 13,000! Still not high but it was measurable so that is a big improvement. I was given more steroids, which by the way turn me red and make me hot and gross, in preparation for my Rituxan treatment.
They started the Rituxan around 10:30 and I was doing pretty good. They start you off slow then work your way up. As it was pushed up though I started having a reaction. My throat, head, ears were really itchy. I felt like I had been playing with cats. I started sneezing and was so itchy. So they had to stop it and give me a shot of Benadryl. I had already received one pill so this was just another dose. After a little bit all my itchiness went away so they started it off again slow. This is when Grandma showed up and sat and held my hand. I slept most of the time because I had then had two doses of Benadryl and was super sleepy. About thirty minutes after they started again I called the nurse in because my left hand felt really restless. It kind of felt like restless leg syndrome in my hand. I felt like I just had to move my hand like it had a twitch that I had to shake out. It was so uncomfortable! They stopped the medicine AGAIN (UGH!) and ended up giving me some Ativan to calm my nerves because that's been known to help with restless leg syndrome. After they stopped the Rituxan the weird arm thing stopped thank goodness. So on top of the bendaryl, I got the Ativan which knocked me out. However, I handled the rest of the Rituxan well. At some point Grandma left. After the Rituxan was done they did another blood draw and my platelets were up to 26,000. Woohoo!! This was great news! The rest of the day was just spent hanging out waiting on Tyrone and Haleigh to get here. Once they got here we hung out a bit then Sami came with yarn, chocolate and pistachios! yum! She also braided my hair which made me feel so much more human! The rest of the night was just spent hanging out with Tyrone and Haleigh. There is not much that the nurses need to do with me so it is usually quiet in between meds and blood draws. I am so glad that my family lives so close by! So after Tyrone and Haleigh left (way late! Haleigh's bed time has gone to the wayside since all this hospital stuff started) I played on the computer my sister so generously let me borrow for the night which was fun. Then when I realized how much time I had wasted playing on the comp I went to sleep. Last night I probably slept the best I have since this all started. Rituxan truly wears me out.
This morning, they did a blood draw and a little while later the main medical team came by to see me. They said they were sending me home today which is great news but that my platelets were 18,000. They did not seem too worried about the 'small drop' but I was, obviously. I know I'll have to go in to the cancer center every Friday for the Rituxan treatment for the next three weeks but I wanted to know if they were planning on checking my blood before then. If it has dropped off since last night I just worry it may drop again before Friday. They said they would talk to the hematologists to see what they said. I know the Rituxan takes a while to kick in, I just don't want it to drop down to 10 again, you know? While I've been waiting for them to say what is going on, I had some issues with a bloody nose but it stopped so they didn't seem too concerned. The plan as far as I know is for me to still be going home soon! I can't wait especially since Mom went home yesterday and I want to go see her!
I'll update when I can. :)
--- P.S. ---
I only had two doses of the steroid instead of the four or five that I had last time. At least I'm not as red as I was a few years ago after this medicine.. left photo is 2009 and right is today
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