The First Day Back in the Office

Side Effects
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This morning my husband dropped me off at the PATH train and I headed into work.  I was a little nervous about the commute, but the morning ride wasn’t too bad.  The train was crowded and I was scared someone was going to elbow me or shove me, but I managed to find a spot to stand that wasn’t too cramped.  Luckily, the air conditioning was blasting in my train car, so I didn’t have to worry about having a hot flash or sweating too much.  When I got to my stop, I waited for the crowd to disperse before going down the stairs.  I didn’t want to feel rushed with everyone around me hustling to catch the next subway train or to get to their office.  Once I made it through the turnstile and up the stairs to subway-level, I paused for a few minutes to catch my breath.  I’d rather take a dramatically long time getting from the train to my office than rush it and have an episode.  Once I felt ready, I headed up the steps to street-level and then into the office.  I always knew I was lucky that my office building is essentially right at the top of the subway/PATH steps, but today that was beyond convenient.

I got on the elevator and headed up to the office.  In case I haven’t mentioned it enough, let me be very clear – I am extremely blessed to work where I work.  I have some of the greatest coworkers you could ask for.  When I got back to the accounting office, I was the first one in so I unlocked the door and headed to my desk.  On my desk was a beautiful bouquet of hydrangeas, roses, and daisies from my team!  Waiting for me was also a bobble-head of our company mascot and a pen from our latest conference giveaway.  I set down my purse and headed out to the main area to see everybody.  I was greeted with hugs and excited squeals welcoming me back.  I missed human interaction so much!  It makes the work day go by faster and it is a lot easier to answer questions in person.  The morning went by fairly quickly.

Every Wednesday our office has a catered lunch.  Usually, a large group of us grabs our food and heads to a conference room to eat together and converse.  I love our Wednesday lunches.  It is probably my favorite part of the week and the part I missed the most.  My coworkers kept telling me how Wednesday lunches weren’t the same without me, but I assumed that was just something they were saying to make me feel missed.  I now know they weren’t just saying that.  I definitely talk the most, but no one seems to mind.  They seem entertained.

The afternoon flew by.  I left a little early to try to avoid some of the train congestion during rush hour.  I accidentally ended up in a train car that had no air conditioning.  Normally I would have switched cars at the next stop, but I had a seat and I wasn’t willing to give up my seat.  Getting a seat on the train is like winning the lottery.  As more and more people crowded into the train car at each stop, the lack of air conditioning grew painfully apparent.  By the time I made it back to NJ I was in the midst of one of my worst hot flashes ever.  I don’t know how one can physically sweat so much in such a short period of time, but I managed to find a way.  It was awful.  After getting off the train, I had to walk up a long, winding, sloped ramp to get to the escalators to street-level.  I should have stopped occasionally on my way up to catch my breath, but I was so sweaty that I just wanted to get to the car.  By the time I got to the car, my heart rate was through the roof.  I suppose that was probably my fault… Oops!

Based on the way my afternoon commute went, I am definitely working from home tomorrow.  It is too much stress on my body trying to get into the city each day.  I think I will take management’s advice and ease back into things.  In other words, I will likely start by working a couple days a week from home.  Next week, for instance, I plan to work Monday/Thursday in the office since I have appointments in the city those days anyways, but I will likely work Tuesday/Friday from home.  I am not sure about Wednesday yet.

The Work Clearance

Treatment
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Yesterday when I saw the doctor he finally agreed to let me go back to work (starting today), so long as I agreed not to put any undue stress on myself or lift/carry/move anything.  I have to keep the physical activity and exertion to a minimum, at least until I have the results from the echocardiogram back.

I had every intention of going into work this morning, but when I woke up my muscles felt tight, cramped, and weak.  I was already nervous about having to climb the subway steps because of my heart palpitations, but climbing 53 stairs with heart palpitations AND muscle soreness?  Not a good idea!  Hopefully tomorrow morning I feel better and can get back to work!  Working from home always seemed so glamorous in theory, but I quickly learned this last month that its not glamorous at all – it’s lonely, it’s boring, and quite frankly, I end up working even longer hours to compensate for the guilt of not physically being in the office.

It turned out to be a good thing that I didn’t go to work today because this afternoon I got a fairly intense bloody nose.  Since my platelets were just checked yesterday, there was no need to panic unless I couldn’t get the bleeding to stop.  Thankfully, after pinching the bridge of my nose for a few minutes, the blood stopped running down my face and, soon after, stopped completely.  If I get another bloody nose of that caliber, though, I’m going to have to call the doctor.

Today was my first day taking 50 mg of Prednisone, instead of 75 mg.  I didn’t seem to have any adverse side effects except for trouble concentrating, though tomorrow will probably be a better indication. I don’t want to jinx it, but today was my first day in weeks without a hot flash!

I called the imaging center this afternoon to make an appointment for my echo.  It turns out that the imaging center only does ultrasounds in their off-site location, which is in Jersey City Heights, and they are only open Tuesdays and Wednesdays from 9:00 AM-3:30 PM.  Tomorrow is already completely booked, so I made an appointment for next Tuesday at 12:30 PM.  I have to work from home that day anyways because I am seeing the hematologist at 3:15 PM for a platelet check.  Unfortunately, since both appointments are on the same day, I won’t have my results from the ultrasound until after I’ve already met with my doctor.  I’m sure if the echo shows anything urgent or alarming he will call me anyways.  I just have to remember to call the hematology center later this week to make sure everything is all set with my insurance.  I don’t want to get another surprise bill in the mail.

The Two-Week Platelet Check

Treatment
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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 Prednisone Problems

Side Effects
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The Prednisone side effects are getting old – FAST. I just want to take a nice, relaxing, hot shower in peace! That isn’t an option. I didn’t even like showering that much until the steroids ruined shower time for me and now I want it back. I’m sick of short, cold showers. And feeling rushed. And did I mention cold? Using cold water is the only thing that seems to delay the overheating/hot flash/heart palpitations. Ugh.

Today I was getting dressed (putting on my pants, to be more specific) and, without any warning or buildup, my heart rate jumped to 165. It felt like my heart was trying to beat out of my chest and escape. Usually my heart palpitations gradually worsen and it slowly gets harder to breath. This was different, though. I got short of breath very suddenly and it scared me. I had to sit down. Oddly enough, my heart rate and breathing returned to normal almost as quickly as they spiked. It shouldn’t be that terrifying to put on pants. I would hardly call getting dressed a physical activity/exertion, but I guess I’ll add it to the list.

The other strange side effect I’ve been having now that I’ve been on high-dose steroids for six weeks is muscle weakness/tenderness. My husband tried to massage my shoulders earlier and the muscles in my upper back/shoulders were EXTREMELY tender and sensitive. Even though he was barely applying any pressure to the area, it was very painful. This concept is lost on me. There are areas on my lower legs where I have this problem as well. The area is sensitive and, when touched, feels the same way pushing on a painful bruise would feel. The part that concerns me is that there are no bruises there – not on my legs and not on my back. So why is it that these areas feel so bruised and painful? Is this the muscle weakness and destruction sometimes resulting from Prednisone usage? Will this problem reverse itself once I’m off the steroids or is this permanent? One more thing to worry about.

There is good news, though! Since the AIHA was the only one of the two diseases responding to the Prednisone and my hemoglobin went up despite the lower dose, I am fairly confident the doctor will taper my dose again on Monday! The taper will likely have little to no effect on my platelets, so it’s irrelevant in regards to the continued treatment of the ITP. Thank goodness! Get me off these things!

The Post-Treatment Blood Draw

Hematology, Remission
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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

Hematology, Side Effects
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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.

Happy Independence Day!

Treatment
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Happy Fourth of July!  Here’s to hoping your day was full of family, friends, & fireworks.  Mine certainly was!

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The Shower Situation

Side Effects
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Last night’s shower at the cottage did not go well. My heart rate by the time I got out and got down to the basement to get dressed was past 160 again. The cottage shower is similar to ours at home in the sense that it’s a standing shower, rather than a tub, and it’s square. Unlike ours at home, the walls aren’t glass and instead of a door there is simply a curtain. I was hoping the curtain would make a difference and allow the steam to escape but it didn’t help much at all. Every time my heart starts racing it becomes SO hard to take a deep breath. I don’t know which scares me more – the fluttering or the difficulty breathing. I also wonder how much my asthma plays into this. My asthma has always been very mild, though, and only really flares up when I have a cold/bronchitis or when I exert myself/exercise. I don’t really consider a shower exercise, though… It never bothered me before the Prednisone. Here’s to hoping this problem reverses itself once I’m off the steroids!  Tonight’s plan is to take a colder, shorter shower and to put a fan in the bathroom window to help with airflow.

The Struggle to Relax

Side Effects
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The week is going to be more challenging than I thought – being in the sun caused my heart rate to skyrocket to 166. I was only in the sun for an hour and I spent that hour sitting on a boat – it’s not like I was moving around or exerting myself at all. How am I supposed to last a week at the cottage without going in the sun? All we do is drink and float in the lake. So now that’s two things I can’t really indulge in – the drinking or the floating.

The Inconsiderate Assumption

Side Effects
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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.

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Fade, bruises, fade!

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