Platelets | Me, Myself, and Evan's

The Two-Week Platelet Check

Posted on July 11, 2016

This morning I had a 10AM appointment with the hematologist. As per usual, the nurse began by drawing blood – two vials – and putting me in an exam room to wait for my turn with the doctor. The doctor started by saying that he intends to disregard the LabCorp results from last week. He said blood should be tested as quickly as possible otherwise it has time to pool and clot, which depletes the platelet count. Since the LabCorp in Saratoga had to send the vial to NJ for testing, the sample was likely compromised.

Today’s hemoglobin held steady at 11.5 and the hematologist said he considers my RBC problem resolved and in remission! Obviously the number will still be monitored as I taper off the steroids but he seems very confident that it will stay at 11.0 or higher and that will be my version of “normal”. The hematologist said that, unfortunately, until I’m off the Prednisone, he won’t know what my “normal” platelet count will be. My guess is somewhere between 60 & 80, but I honestly have no idea. People with ITP are known to have a lower platelet count than the average human, but where exactly that count falls is different in each individual. Some people hover around 20 as their version of normal, but I’m hoping my normal will be a higher, safer number. Time will tell!

Today’s count was 96, so if we ignore last week’s skewed results and look at the bigger picture, my count Monday the 27th after 3 days of IVIG was 159 and my count two weeks later on the 11th was 96. My count only dropped 63,000 over two weeks – I don’t think that’s too bad! Going forward, as long as it drops at a slower rate or stabilizes completely, I should be fine! I have a good feeling about this! Maybe I’ll be completely off the Prednisone by the end of the summer and I won’t require any further treatment! That would be ideal!

The doctor’s plan is to taper the Prednisone about 20% at a time. That means the taper that starts tomorrow should technically be 60 mg but they don’t make pills in that dosage so he’s tapering me to 50 mg. Here’s to hoping for little to no side effects. Since the first taper and the IVIG occured simultaneously, it was hard to tell which side effects were due to the treatment and which were due to the lower dose of steroids.

When I was asking the doctor my questions today I happened to mention my frequent heart palpitations, shortness of breath, and inability to exert myself (walk up the stairs, shower, put on pants, etc.). Originally, a few weeks back, when I expressed this same concern, he said it was due to the Prednisone, which can make patients feel anxious and jittery. When he found out today that my frequency of episodes had increased to daily or twice a day, despite the decreased dose of steroids, he became a little concerned. He said that shouldn’t be happening – the episodes shouldn’t be that frequent and they should have decreased when the dose did. As a precaution, he is sending me for an echocardiogram (an ultrasound of my heart). I know it’s just to double check that everything is okay with my heart, but I’m still a little nervous – not for the procedure, but for the results.

The only thing that has been keeping me sane these last six weeks is knowing that my condition had nothing to do with my weight. It’s unrelated to my bad eating habits, my lack of exercise, or the extra pounds I’m carrying around. Knowing that Evan’s Syndrome has literally nothing to do with outside forces and is completely random and unable to be prevented would probably worry and terrify most people. But me? It makes me feel relieved – relieved knowing that I couldn’t have done anything to stop this from happening. I couldn’t have prevented Evan’s Syndrome by eating more vegetables or running or weight lifting. I would much rather “fate” be to blame. That gives me peace of mind in a twisted way.

That is also why this ultrasound is so terrifying. It reopens the possibility that I am the enemy. I am petrified they will find something wrong – a murmur, heart disease, heart failure, etc. – and will determine the cause to be weight-related. I was fine with these episodes happening when I could chalk it up to the Prednisone, but if suddenly I have to face the reality that my habits and way of life caused these symptoms, I might lose my mind.

The Post-Treatment Blood Draw

Posted on July 7, 2016

My IVIG treatments finished on Monday, June 27th and my one-week blood draw was this past Tuesday, July 5th. I called my hematologist’s office yesterday morning and they had the results of the CBC from LabCorp already. To my surprise, my hemoglobin went up to 11.6! Even though my Prednisone was decreased to 75mg, my hemoglobin went up…? Can that really be true?! Ecstatic doesn’t even begin to cover it. The hemolytic anemia was, originally, the worse of the two problems. It was the AIHA that caused my jaundice and elevated bilirubin and landed me in the hospital in May. I am VERY excited that the AIHA is essentially in remission at this point. It will still need to be monitored as I continue to taper off the steroids, but I am no longer worried about it.

My platelets, on the other hand, plummeted again. My last platelet count was 159, which was great considering 150-450 is considered the normal range. Fast forward to this week and my platelet count was 62. In case you don’t feel like doing the math, my platelets dropped 97,000 in eight days. That’s not ideal. I had read that the problem with IVIG is that it is often a quick fix, but a lot of times doesn’t work long term. The infusions are meant to give you a large boost in platelet count, but then it is up to your body to continue producing platelets and to know not to kill off the good ones. I think if there was an underlying cause to my low platelets, such as alcohol consumption, drugs, etc., IVIG and abstaining from the problem substance would have been enough to fix it. Take away the problem – take away the destruction. Then it simply would have been a matter of infusing the platelets and PRESTO! Since my problem is ITP, which, by definition, is an autoimmune disease focused on platelet destruction with no underlying cause, my treatment options are more trial and error. The infusions worked to boost my platelets, but my antibodies are still latching on to these platelets and marking them for destruction. Until/unless my immune system can begin to recognize its own healthy platelets again, I’m not super confident my numbers will ever be under control. It seems ITP is going to require constant maintenance.

The thing that I find really frustrating is that, of the two autoimmune diseases that comprise Evan’s Syndrome, ITP is the one that is harder to recognize or diagnose. With AIHA, I felt sick and miserable and tired and weak. With ITP, I just bruise easily. I don’t feel sick, I don’t feel broken or weak, and yet, I’m undergoing long treatments and being kept home from work. I know I’ve said it before, but it is so hard to grasp the concept that I’m sick but don’t feel sick. The idea that my body is destroying itself without any indication is frightening. How am I ever going to know if my platelets are low without a blood draw? I won’t. At least with AIHA, there is a chance I will be able to notice when something is wrong (to some extent). I’m afraid with ITP that I’ll never know there’s a problem until it’s too late.

When I see the doctor Monday I find out what comes next. He’s probably going to recommend a bone marrow biopsy (no, thank you) or another round of IVIG infusions (not loving that idea either). Hopefully he doesn’t immediately jump to Rituxan (the chemo-like treatment). If I had to guess, I’d say it’s likely that there is more IVIG in my near future, but maybe he’ll try a different route considering the reaction/side effects I had by the final treatment. Maybe he’ll say 62 is a safe enough number and he will hold off on any additional treatments and let me wait it out to see if the number holds! Either way, at least half of the ES is under control and responding to treatment the way it should be. One down, one to go!

The Paranoid vs The Cautious

Posted on July 5, 2016

This morning my husband and I had to drive into Saratoga so that I could have a blood draw. We had to drive 50 minutes there and 50 minutes back all for a three minute blood draw, but otherwise it went well. I’m not sure how long it will take to get the results. I am much more likely to hear my numbers from the doctor than from the lab. LabCorp said they are going to mail me a copy of the results, but it could take 7-10 business days to receive. I’ll already have my next blood draw (and results) by then, rendering today’s results useless. I’m hoping my hematology center gets the results by Thursday and I can call them and ask for my hemoglobin and platelets. I’m not worried about the platelets, but I’m a little nervous about my hemoglobin. Since the RBCs were responding to the steroids, I’m afraid the taper will have negatively impacted them. I would love to at least be able to maintain a double digit hemoglobin number and triple digit platelets.

I had a lot of trouble with the hot flashes today. It was 80 outside and humid. Being indoors wasn’t enough to beat the heat. I had the fan directly in front of my face and was still dripping sweat. I had to go into the lake to cool down, which did work, but then when I got back up to the cottage my oxygen saturation was at 93 and my heart rate was at 164.

In addition to the heart fluttering and profuse sweating and shortness of breath (only when my heart is racing) I’ve been feeling lately, my stomach hurt earlier. This is the part I hate. The first time my hemoglobin was low I didn’t recognize any of the symptoms as a cause for concern. At the hospital, the nurses and doctors kept saying “at least next time you’ll recognize the symptoms”, but that’s not necessarily true. The reason the symptoms didn’t concern me the first time isn’t because I didn’t notice them happening – it’s because they are such common symptoms. They can be caused by anything. My stomach ache could be because I ate too much or too fast. Back pain could be related to an injury or stressor. These aren’t things that are going to set off any bells in my head. Right now it has the opposite effect though and ALL of these things are setting off bells. My brain keeps thinking any one of these common symptoms could be the sign I’m supposed to recognize or be looking for in terms of a relapse or drop in my numbers. Am I paranoid or simply being cautious?

Also, the fact that exertion of any kind, no matter how small, completely knocks me on my ass isn’t going to be good. Walking up about 20 stairs from the dock to the cottage caused my heart to beat like crazy. Imagine how my commute to/from work is going to be everyday. That is 52 stairs in the morning and a fairly lengthy walk uphill in the evening. It wasn’t easy or pleasant before and now it’s going to be even worse. Essentially, any time I have an “episode” where my heart starts racing, I have to sit down, relax, drink some water, sit in front of a fan or apply ice packs to my face and neck, and take deep breaths until my heart rate returns to a safe level. That’s going to get old FAST in the mornings. But I’ve already been out of work for nearly six weeks. I’ve been working from home as much as possible, but the last couple of weeks were useless between treatment and the nasty side effects of treatment. I feel guilty because my hematologist keeps pushing back the date in which I will be able to return to work. At the same time, though, I trust his professional opinion. The earliest I will be back in the office is Tuesday, July 12th, pending the results of my July 11th appointment and blood work.

I’m not even sure what the game plan for Monday’s appointment is. I’m assuming the discussion will be largely based on my blood counts. I figure if my counts are good, he will taper the Prednisone again and set up an appointment for the following week to check my progress. If my counts dropped, I’m not sure what happens next. I doubt they will have dropped low enough to warrant any kind of immediate action, but he may bump the steroids back up to 100 mg. I highly doubt he will increase the dose because he wants me off the Prednisone as much as I want to be off of it, but there’s always a chance he will choose that option. Regardless of my counts, I’m sure I’ll have weekly blood draws and appointments until I am off of the steroids completely.

Once I’m off the Prednisone, the doctor and I will be able to focus on what caused the sudden AIHA & ITP (ES) and how we are going to treat it long term. In the meantime, things are all still up in the air:

How did this first 25 mg taper affect my numbers? Is it going to affect my platelets too or just my hemoglobin? If my numbers didn’t drop does that mean my immune system fixed itself? Is it possible that this has gone away and will never be a problem again? Will the next taper be more drastic or would we expect to see the same type of results? At what point during the tapering process is relapse most common?

There are so many things I wish I could know before it’s too late. I don’t want to find things out the hard way this time.

The Inconsiderate Assumption

Posted on July 3, 2016

On our way to the cottage yesterday, my husband and I stopped at a thruway rest stop to use the restroom and grab a snack. As I was washing my hands, the lady at the sink next to me was blatantly staring at the bruises on my arms in horror. She was NOT subtle at all. Judging by the look on her face, I am 99% certain she thinks someone beat me and gave me these bruises. Part of me wanted to yell, “I have low platelets, bitch!” or perhaps a simpler, “I have a medical condition”, but then I realized it’s none of her damn business! I shouldn’t have to explain myself to strangers.

Though I find it rude, strangers have every right to stare, but they have no right to know my personal business. I shouldn’t have to feel self-conscious washing my hands in the restroom. If you’re going to make assumptions or judge me, fine, but please at least be subtle about it. It would be different if her face showed concern, but it was just disgust. I’m sure she went back to her car and told her husband or friend or driving companion some crazy story about the bruised woman in the bathroom. Speculate all you want, lady, I’ll just be over here trying to find a long sleeve shirt to wear all week in the eighty degree weather. So, thanks for that. I know I shouldn’t let other people’s looks or judgments bother me, but it’s hard to ignore the looks.

Fade, bruises, fade!

The Final IVIG Treatment

Posted on June 27, 2016

Today was a disaster of a day. From the moment I woke up I had an excruciating headache. By the time I got to the doctor’s office for my 9AM appointment, I was very shaky and sick to my stomach. They took me in the back a little after 9:15 and I chose the corner recliner again. I took two Tylenol and then the nurse drew three vials of blood. Luckily, the vein on my right elbow that they used the first day was healed enough to be used again. That meant no searching for a vein on my forearm and no bruise! They started me on a bag of fluids and then the Solu-Medrol. By this point, it had been almost an hour and my symptoms weren’t improving at all. I was shaking and whimpering in the chair and writhing around in pain. Then, the hot flashes started. I was literally dripping sweat while everyone around me had on blankets. All of a sudden the nausea hit me HARD and I had to ask for a puke bucket. The nurses asked if I had eaten any breakfast, which I had (blueberry bagel with butter and jelly), and then pricked my finger to check my blood sugar. My blood sugar was at 76, which they said was low considering what I’d eaten for breakfast, so they brought me juice and asked me to sip on it.

At this point, the nurses were concerned and called my doctor. He came back and saw the condition I was in and asked the nurses to give me a Zofran drip to help with the upset stomach. He then told me that the IVIG was working! He said my hemoglobin was at 10.5 and my platelets had skyrocketed to 159,000 over the weekend! Unfortunately, the side effects I was experiencing were a combination of the IVIG taking its toll on my body and the lower dose of steroids (withdrawal). At least it wasn’t all for nothing! I would hate to have these miserable side effects AND be told the IVIG didn’t work.

After the doctor left the room the nurse started the Zofran drip followed by the Benadryl, which put me to sleep. By the time I woke up it was 11:30 already and they were JUST starting the first vial of Carimune NF. Thankfully, the Zofran helped my stomach immensely! I still had no appetite though. I didn’t touch any of my snacks except for a PB&J and even that didn’t settle well.

They ran the first drip slowly because I was already in such a weak state. The vial finished around 1:00 and the second finished by 2:00. Based on my timelines from my previous three treatments, I had expected to be done and out of there by 2:00, but I was only halfway done. Halfway?! That fact sank in and I started to get visibly upset. Yes, this means I cried. I was in a room full of elderly patients and I was crying and whimpering in the corner while they stared at me. I don’t even feel bad. I can’t even begin to explain the amount of pain I was in.

The nurses started the third vial at 2:15, gave me two more Tylenol, and sped up the drip. By the time the bottle finished at 3:25, I was in even worse shape. I have never felt so uncomfortable and miserable in my entire life. I asked the nurse to talk to the doctor about skipping the fourth and final vial. Another hour in that chair would have been excruciating. Luckily, he told the nurse it was fine to skip the last vial and that I should head to his office so we can talk about next steps before I head home.

My husband drove over from work and met me in the doctor’s office so I wouldn’t have to be alone. The doctor answered my questions (below) and gave me a prescription for Percocet (a combination of Oxycodone & Tylenol) to combat the awful headaches.

I slept in the car while my husband ran into the pharmacy to fill my prescription. As soon as I got home I took two Percocet (instructions say take 1-2 every 4-6 hours for pain) and passed out. When I woke up a couple of hours later I felt infinitely better, but the relief was short-lived.

Can I go to the cottage?
Yes, absolutely!

Can I swim in the lake?
Of course!

When is my next appointment/blood draw?
One week from today. Most places will be closed on the fourth, so Tuesday is fine. I will need to go to a Quest or LabCorp up near the cottage. He gave me a prescription for bloodwork and the results just need to be faxed to him. He is also on vacation next week anyways, so it’s not a big deal that I am not in town.

How frequent will they be after that?
Depends on how the numbers looks. While I’m still on the steroids, blood draws will likely be once a week to make sure my numbers are holding steady on the lower dose of steroids. My next appointment with the doctor is Monday, July 11th.

Will I ever be able to drink alcohol again?
Luckily, I didn’t even have to bring this up – he addressed it on his own! He said that I can definitely have a couple drinks each day like a glass of wine or a beer. He just doesn’t want me doing keg stands. So looks like I’ll be able to sip on some Moscato or hard cider next week after all! I’m still going to take it easy, but it’s nice to know I have options.

How much Prednisone should I be taking and when will my next taper be?
He said taking 75 mg over the weekend was perfect – thank goodness! He wants me to stay on the 75 mg a day until I see him on July 11th. My assumption is that he will then taper me to 50 mg a day, so long as my counts are holding steady.

The Haunting of the Platelets

Posted on June 19, 2016

My low platelet count is starting to haunt me. It is affecting more and more things in my daily life. First, the problem was that I couldn’t commute into the office anymore and had to work from home. Then, I had to start using a soft toothbrush and electric razor. This past week I found out I cannot drink any alcohol until further notice, which is basically all people my age do in social settings. I’m nervous to ask when the alcohol ban will be lifted. I know my health is most important and I truly believe that, but I hate being told I can’t do something, especially with July Fourth and summer right around the corner. Today presented a couple of new challenges. To celebrate Father’s Day, my in-laws and husband and I went to Stony Creek Brewery in CT for a tour and tasting. I had to sit back and watch as everyone around me drank. Luckily, I don’t like beer anyways, otherwise it would have been hard to resist.

When my husband and I got back to NJ tonight I noticed a couple of bruises on my body that weren’t there earlier. I have a purple bruise on my chest and two brown/yellow bruises on my arm. It literally feels like they appeared out of nowhere. I didn’t run into anything or bump myself at all. I tried researching what could have caused the mystery bruises, but the internet told me what I already knew – my low platelets (ITP) caused the bruising. I’m not used to being considered “fragile”. This just proves, though, that even if I am extremely careful and I don’t bump into anything, I am not immune to bruising.

The Platelet Check

Posted on June 16, 2016

Today the doctor’s office called a little after noon and asked me to come in for a CBC blood panel to check my platelet count resulting from Tuesday’s transfusion. Within ten minutes I had grabbed an Uber and was on my way to the office. They took two vials of blood and then I met with the doctor. My hemoglobin went up to 10.7 (half a point increase), but my antibodies test came back positive, which means antibodies are still latching on to my healthy RBCs and destroying them. This was further solidified by the fact that the doctor said I’m still in hemolysis. I am hoping the IVIG will still be just as effective while in active hemolysis. I would hate to know what my hemoglobin would be at without the Prednisone. Somehow, with the Prednisone, it does seem to be going up!

My platelet count from today was up to 31,000, which makes perfect sense. The doctor predicted with the one unit of platelets that my count would rise from 13 to around 30.

The plan at this point is to stay on the steroids and hope that insurance approves the IVIG treatment late today or early tomorrow. Not sure when the tapering off will begin so I am trying not to worry about it. The doctor and his staff keep repeatedly calling my insurance company for approval, which is nice. It’s nice not having to do that myself. Assuming it is approved by end of day tomorrow, the office will call me and set up a time for me to come in on Monday for my first dose. Treatment will likely be Monday-Thursday, 9:00-2:00. I won’t know until the end of the first treatment if I am going to be able to work from home in the afternoons. The doctor said that 40-60% of patients, the majority, experience painful headaches following the treatments and spend the afternoon and evening lying in bed on prescription painkillers that he prescribes to help manage the pain. Here’s to hoping the pain isn’t too bad and that I am able to work for at least a few hours a day.

Also I asked the doctor a few of my questions:

Can I still fly to Chicago next weekend?
No. Because of the IVIG and the probable headaches, he doesn’t think it’s a good idea to be too far away or to take a plane.

If the IVIG doesn’t work, do we need to resort to Rituxan? If so, how soon will that be?
Since Rituxan can cause reproductive problems, it might not necessarily be the next step. He said he often tries IVIG a second time first, but that it isn’t worth talking about unless we need to take that step.

Was the large platelet drop due to my alcohol intake this past weekend?
Unfortunately, the answer to this was yes. He thinks the drinks I had at the wedding and the night before definitely were the cause of my platelet drop from 44 to 13. It sucks knowing I did this to myself, but at the same time, I thought maybe there was a small chance the alcohol would react with the Prednisone – I had NO idea that the alcohol would thin my blood and drop my platelets. I can’t beat myself up over an honest mistake.

The New Hematologist

Posted on June 14, 2016

I decided on Thursday evening, after my rude encounter with the staff at the hematology office, that I needed to find a new hematologist. I know I am going to need to see this specialist for a very long time and I refuse to settle. I want a doctor I can trust. Thankfully, I found that today.

I called the old doctor’s office this morning around 10:30 hoping to get my numbers from last week so I could share them with the new doctor. The receptionist said “oh. Nobody called you?!” and then proceeded to tell me the results were finalized yesterday and I needed to come in right away because my platelets weren’t responding to the steroids. At this point I was fed up so I said I’d call back to schedule an appointment. My hemoglobin was up to 10.4 from 8.7, but my platelets had only gone from 41 to 44. These results were a week old at this point and I was just finding out about them. This only served to solidify my decision to switch hematologists.

I worked from home today because I had an appointment with my new hematologist at 11:30. The office was easy to find and spacious. I filled out some paperwork and was taken in the back around 11:50 to have my blood drawn and my vitals recorded. The nurse took three vials of blood and immediately ran one through a machine that spit out a reading in less than five minutes! Do you know how amazing it was after the fiasco with my original doctor to know my numbers before leaving the office?

By the time the doctor met with me, he already had my counts. My hemoglobin dropped ever so slightly to 10.2. This drop wasn’t that worrisome or significant, but the steroids should have at least kept my numbers stable. He then explained my condition to me and discussed that yes, figuring out a treatment plan is important, but so is taking ten steps back to figure out why this condition started in the first place. Until we know what caused it, it’s very hard to stop it. He then got very serious and said “you might want to conference in your husband for this part”. He proceeded to tell me that my platelet count was at 13. 13?! How did it drop by 31,000 in one week? Seven days?! The thing that REALLY concerned him and, in turn, frightened me is that the number was able to drop so much and so low while on high dose steroids that were meant to do the exact opposite.

Because of my dangerously low count – at 10 and under some people start spontaneously bleeding internally without any cause or underlying injury – he said the first step was to send me to Jersey City Medical Center for an immediate outpatient platelet transfusion. By the time the hospital finished registering me it was past 3:00. The infusion center drew my blood to send to the lab for cross matching. I couldn’t get platelets until I had been matched. Matching takes the lab about an hour and then the transfusion takes about an hour as well. Unfortunately, the infusion center closes at 4:00. The nurses called the doctor to ask if I could do the transfusion tomorrow morning at 8:00 instead and he said that it can’t wait. He told them that if they can’t do it today I would need to be admitted. Getting admitted would suck for two reasons – it would mean staying overnight even though I just needed a quick one hour transfusion & it would mean another $500 admission fee.

Luckily, the lab was able to rush match the blood and had the platelets to the nurses by about 3:45. One of the nurses graciously offered to stay past her shift to administer the transfusion, even though she doesn’t get paid overtime. The platelet bag finished around 4:30 and I was able to head home.

Here is the plan put in place by the new hematologist:

Look at my blood smear under a microscope to see if there were any Giant Platelets the machine weeded out and didn’t count.
The platelet transfusion – Check!
Begin IVIG (pending insurance approval, which takes 24-48 hours). He wants to have me do IVIG four days in a row (excluding weekends). He said it takes about five hours each time and it involves being hooked up to an IV for those five hours.
See how the IVIG works. If it works, I can begin tapering off the steroids, but he will have to closely monitor my hemoglobin to see if it starts dropping. If the IVIG doesn’t work, he wants to do a bone marrow biopsy to see if my bone marrow has stopped producing platelets for some reason.

He has me out of work until after IVIG is complete. I can work from home, but he doesn’t want me commuting into the city on the train. All I would need is for one person to accidentally elbow me and I could very likely start bleeding internally. Unfortunately, there aren’t usually any visible signs of internal bleeding until it’s too late.

The Discharge

Posted on June 3, 2016

My hemoglobin number went up to 8.7! It was the first time that it increased without a transfusion of any kind. My platelet count was still low, but not dangerous, and 8.7 still isn’t very high for hemoglobin, but my body’s version of “high”/”normal” is going to be different than a healthy person’s.

The doctor cleared me for discharge around 4:00 PM. Earlier in the day even I was switched from “SBA” to “Independent” and was able to go to the bathroom on my own and walk to the gift shop with my mom. By 1:00 they gave me my last round of steroids and then removed my IV. Soon after they took off my portable heart monitor and let me change back into real clothes!

When I was discharged, my urine was still a little orange, but my stomachache, muscle fatigue, and jaundice were gone. We stayed at a local Hampton Inn for the night to relax before driving back to NJ on Thursday. I’ll know more once we see the hematologist on Tuesday! Fingers crossed that the steroids are enough to have normalized my platelets and RBCs.

The Diagnosis

Posted on June 3, 2016

My Tuesday morning hemoglobin count was 7.9 and my platelets were back up to 33,000. The threshold they usually use to determine whether or not to transfuse a patient is 8.0. Since I had only been on the three-times-a-day dose of steroids for 24 hours, they decided to wait it out and see what Wednesday’s number looked like. They wanted to give the steroids time to kick in and do their job. Also, there is always a risk with a transfusion, especially when the blood isn’t an exact match. If Wednesday’s number is up then I will likely be able to go home. If Wednesday’s number is down, despite the added steroids, I will have to start IVIG treatment, which is an infusion once a day for three days (this would make my earliest departure Saturday).

Everything came back negative. By process of elimination, it was determined that I have Evans Syndrome. Evans Syndrome is a drop in two of the three blood groups (in my case, red blood cells and platelets) with no underlying cause. The primary course of treatment is steroids. These are used to suppress the immune system and temporarily stop it from destroying healthy cells and platelets. I will likely be on a large dose of steroids for the foreseeable future.

I got to walk around the hospital halls with an aide on Tuesday while wearing a pulse oximeter so they could measure my heart rate and oxygen levels. Luckily, I did so well that they took me off the oxygen mask! As I slept Tuesday night, my heart rate dropped to 45 beats per minute and ICU sent the nurse in to wake me up and make sure I wasn’t crashing. If anything, this just proved that my tachycardia was fading!