Today I've decided to post an overall recap of the platelet mis-adventure. It's a relatively long post. If blood bores you, just come back tomorrow! I have a great carrot recipe.
My reason for taking the time to share this particular post is related to Google. I get a reasonable number of hits to the blog from people who Google "ITP." I am hoping to provide some helpful information for those people because I know how overwhelming it is to get a diagnosis and have no idea what it means. I did a LOT of Googling the first few months of ITP-life. I was so curious to hear from other people who had the same thing. I wondered what life would be like. So here's what happened two weeks ago. I'll share about it today and then hopefully not mention the platelets very much moving forward.
Sunday, October 13, 2am: I woke up in the middle of the night, and it was frightening. My "lady time" was extremely heavy. "Something is not right" I thought to myself (side note: low platelets can cause very heavy periods). Then I looked at my ankles for any signs of petechiae. Sure enough, I had a lot of tiny red dots. More than I'd ever seen before. I was scheduled to lead worship and preach at both services, so I figured I'd address the platelet situation after worship. I went back to sleep.
Sunday, October 13, 6am: My legs were fully covered in petechia when I woke up, and I had a cry in the shower. I knew something was really not right, but I wasn't exactly sure what to do. There happened to be a fly in my bathroom that day. The only fly in the whole house. I was really scared, and he actually made me feel less-afraid. It was pretty surreal. My little angel fly.
Sunday, October 13, 8am: Worship services would be held at 8:30am and 10:30am. I had a feeling I was going to be admitted to the hospital after church, so I organized some back-up plans for all the evening meetings. I also told my colleague, Anna, that perhaps I had a lil' platelet problem going on. "Hey, Anna, no big deal, but I thought I should let someone know. I think my platelets are low. I'll go get it checked out after church." Anna was very supportive and encouraging.
I went into my office and closed the door before first service. Then I called the main Mayo number and made a plan. I'd call the hematology on-call resident after 2nd service ended. I felt good at that point and I was really excited to preach. I knew my count was going to be really low either way, so I opted to lead worship and then head in for a blood test. As I have mentioned before, low platelets aren't something you can "feel." A person just gets symptoms on the outside. The problem is that when the number gets really, really low, spontaneous bleeding can happen on the inside and even small scrapes or cuts can bleed without stopping.
Sunday, October 13, 11:45am: Everything went very well at both services. But, by the time I got back to my office, I was officially super scared. Everything was done, and I was free to go, but I was dragging my feet. I talked to the on-call resident and she scheduled an immediate blood test. She said she'd call me back with the results as soon as she had them. The plan was to be admitted if the count was under 10,000. If it was between 10,000-30,000, I'd be able to be an out-patient and get IVIG through the Infusion Therapy Center. I really didn't want to know what my count was. I had petechiae on my face and in my mouth at that point.
Sunday, October 13, 1pm: I got the blood test and then headed over to my mom's.
Sunday, October 13, 2pm: While we waited, Mom and I went for a little walk and chatted. I felt good, but I knew I was not good on the inside. Then the on-call resident called. She had already talked to Dr. Hook, my hematologist. Her voice was very intense and a little shaky. "You are at extreme risk. You cannot get a paper cut. You cannot fall down. You must come right now." My platelet count was basically as low as it gets. 1000.
Sunday, October 13, 3pm-midnight: It was really difficult for the nurses in the Infusion Therapy Center to get the IV in so that I could receive the first of two IVIG infusions. Apparently when platelet counts get that low, veins become especially cumbersome. The harder it got to get the IV in, the more scared I became. Then, an attempted-IV spot on my arm wouldn't stop bleeding for a long while and I got a hematoma. At that point, I was sufficiently completely freaked out and crying. Then they tried in my hand, and that didn't work either. I'd never had a situation where I was bleeding without stopping before. At that point, I finally felt ready to take the resident's guidance advice and be admitted. Previous to that, I would have done about anything to avoid being admitted. I had made it three years with ITP without having to be hospitalized. But then I knew that it really was a very serious situation. Everyone felt this was the best option, at least until the platelet numbers were stabilized. I was admitted to Methodist on the hematology floor. That first night I received one large unit of IVIG and then a unit of platelets.
Usually people with ITP aren't given platelets because the body gobbles them right up. But in this case, it was the best option for a temporary boost until the IVIG would start working.
Monday, October 14: I started round #2 of IVIG around 9am. I had never received two large units that close together. I felt fine during both infusions. Actually, I felt great. I ordered from the hospital food menu and had some wonderful visitors. All was well. My counts bounced up to 17,000 but then back down to 5,000 that first evening. Disappointing. I was going to have to stay at the hospital longer than expected.
Monday, October 14, 9pm: My head started pounding and my stomach was not feeling quite right.
Monday, October 14, 9pm - Wednesday, October 16: NIGHTMARE DAYS. Oh my. I truly don't remember most of these days. I felt the worst I have ever felt. By far. The worst. I started vomiting and couldn't keep anything down, including water. I was having a reaction to the IVIG infusions. I have had smaller-scale reactions to IVIG in the past, but nothing like this. I couldn't keep my eyes open. The room had to be dark, and I couldn't handle any noises or smells. I got fluids through my IV and Tylenol, too. I was still throwing up when I was discharged to my mom's house. My counts were up to 33,000, so there was no longer a reason to be hospitalized, which was good. But I sure felt bad, bad, bad. Apparently, this is something that happens to some people when they receive large doses close together.
Wednesday, October 16 - Monday, October 21: I stayed at my mom's throughout this time. My head and neck were so painful. The room was always spinning, and I couldn't eat anything. At that point I was taking Tylenol as well as my normal platelet medicine, Promacta. I was also taking a pill for nausea and a pill for pain. I was a hot mess. I truly wondered if I would ever feel like myself again.
Sunday, October 20: I still felt miserable. I knew if I could just keep some food down, I'd start to feel better. Mom and I Googled to find good foods to try when reintroducing food after stomach problems. The food that helped the most was actually a drink: Kefir! I highly recommend it because I think it was finally helped me turn the good-health corner. And ginger tea. I stopped taking the pain med and the nausea med, even though I was still in major pain and feeling sick to my stomach. My body is quite sensitive to medicine, so I wondered if they were perhaps doing more harm than good.
Sunday night I spiked a fever again, so that was a little worrisome. But I returned to taking Tylenol every 4 hours, and that worked. The fever, nausea, and headache are all side-effects that can occur with IVIG. The next morning I was feeling stronger. Finally. I packed up and headed back home to Stewartville! I hadn't been there in a week!
Tuesday, October 22: I returned to work and had a good week back. I went home for naps each day, and that really helped. I have had no caffeine in the past few weeks, so I need a lot more sleep than I used to. It feels good, though.
Background: The doctors think that the reason my count probably got so low was because about 3 weeks prior to the hospitalization, I got a cold. It wasn't a terrible cold. Just a normal cold that lasted a few days. But apparently any kind of cold or virus can really be bad for ITP folks. So in the future, I am supposed to go and get a blood test during the cold and then one week after. That way we can boost the daily med instead of getting to an emergency situation again.
That's the scoop. If you have ITP, take a deep breath and know that you're not alone. If you are using IVIG as a treatment option, be prepared for possible side effects. I've never had side effects DURING an infusion - they've always started about 36-hours AFTER. I recommend making sure your doctors/nurses pre-treat you with Benadryl and Tylenol. Drink a lot of water. But even with all that, you still might have side effects. If you do, know that eventually it does get better. But advocate for yourself! Make sure you tell the medical team about your experiences and concerns.
Thanks for the support and encouragement, friends. That's it for platelet talk unless I have something worth mentioning in the future.
Remember, tomorrow is Carrot Day! See you then!
So glad you are feeling better and will be glad to have you back after what was such a scary situation, even if for right now it is only 90% Emily. My heart leaps out to you.
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