tachycardia | Me, Myself, and Evan's

The Work Clearance

Posted on July 12, 2016

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

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 Prednisone Problems

Posted on July 8, 2016

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 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 Shower Situation

Posted on July 4, 2016

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

Posted on July 3, 2016

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 Surprise Visitors

Posted on July 1, 20163 Comments

My little sister and her roommate were supposed to fly to Denver, CO last night for vacation, but due to flash flooding, all flights from Chicago to Denver were grounded and the airline couldn’t get them on a flight until Saturday night. Since they already had the days off of work and their bags were packed, they decided to take a spontaneous trip to NYC to stay at our apartment while we’re at the cottage. I’m excited that my sister got to see my apartment, but I’m even more excited that we overlap for about a day and a half, meaning that I got to see my sister today! It doesn’t make up for the Chicago trip I had to miss last weekend, but it’s still ten times better than not seeing her at all! I knew I missed her, but I forgot how much until I got to hug her.

In terms of my side effects, today was certainly better than the past few days. I still didn’t leave bed much and my appetite this morning and early afternoon was practically non-existent, but by dinner I was able to eat a real meal and sit up in bed for a little bit. For some reason, even though it makes me extremely overheated, laying on my husband’s shoulder makes my headache better. It might just be psychological, but I’ll take it! Also, the makeshift blackout curtains that my husband hung make a huge difference. My eyes have been super sensitive to the light.

The one thing that hasn’t improved at all is showering. Last night’s shower was rough. I think I was finally able to pinpoint the exact cause of the shortness of breath, though. The problem is the steam. Since our new apartment’s master bathroom has a small, square, glassed-in standing shower, the steam accumulates fairly quickly. Don’t get me wrong, I love having a glass shower, but I wish it was a little bigger so the steam had somewhere to go. The only way to obtain any relief was to periodically open the shower door to let some steam out and some cold air in. Basically anytime I wasn’t under the water (ex. soaping up or shampooing my hair) I had to leave the glass door open. Again, not ideal, but at least it was a workaround. Hopefully this won’t be a problem forever.

The only other update is that my foot cramps are back. That is definitely due to the Prednisone, though, so hopefully it won’t be a problem within a few weeks. I’ll just have to deal with it until then.

I’m finally all packed for the cottage and we’re hoping to leave tomorrow afternoon. Fingers crossed! Last time we headed to the cottage was Memorial Day Weekend and that didn’t end well, so here’s to hoping we finally get the relaxing week away that we want/need. My husband has been such a trooper taking care of me and waiting on me for over a month at this point – he deserves the chance to relax! Hopefully my Percocet/Oxycodone will keep the headache at bay long enough for me to relax this week, as well! Or at least long enough for me to survive the four hour drive upstate!

The Side Effects

Posted on June 28, 20161 Comment

I hope every day isn’t going to be like today. I wish I could at least know how long these IVIG side effects are going to last. Or I wish I could know how much of what I’m feeling is due to Prednisone withdrawal. I’m inclined to believe it is a combination, like the doctor suggested, but I’m praying most of it is just from the IVIG, meaning it will subside and eventually fade away within the next week or so. If these headaches and lack of concentration are mostly due to Prednisone tapering, I’m screwed for at least the next month. UGH!

The plan today, tomorrow, & Thursday is to work from home, but today was a total fail. I logged on around 8AM, had breakfast, took my pills, worked for about an hour and then the intense migraine set in and looking at the computer screen was making me want to claw my eyes out. I had to walk away. I took a couple of Percocet and then immediately fell asleep for an hour or hour and a half. By the time I woke up, the painkillers had kicked in and I had about 30-45 useful minutes before my headache returned. Anddddddd repeat the same process. All day. I ended up having to cancel/reschedule my graduate school interview that was scheduled for 6PM via Skype because I couldn’t function for more than a few minutes at a time. I feel bad cancelling and I hope it doesn’t hurt my chances of admission, but there is no way I would have been able to accurately portray myself in a video interview like this.

By the time dinner rolled around, I didn’t have much of an appetite. I made myself eat anyways, especially since I didn’t eat lunch. Then I had to face my newest enemy – the shower. Once again, my oxygen level dropped and my heart rate shot up. I don’t know if it is the steam, the enclosed space, or the fact that I’m standing for more than a couple of minutes, but it is extremely frustrating.

I think the thing that is perhaps the most frustrating, though, is how crappy I feel in general. A couple of weeks ago when my platelet count was awful, I felt totally fine. Things were going crazy inside my body, but on the outside, I had almost no symptoms. At the time it was terrifying, but now I miss it. It’s ironic how “getting better” has made me feel so, so much worse. Now that my platelets have reached an acceptable level, I’m all of a sudden completely broken on the outside. How does that make any sense?! Maybe this IVIG treatment was more intense than I had originally thought.

The Semi-Productive Sunday

Posted on June 26, 2016

Today was the most productive day I’ve had in a while. I woke up around 7, made myself breakfast and sat down to watch Netflix. After I ate I took my pills, ordered my husband a present off Amazon, added to yesterday’s blog post, and emptied the dishwasher. I laid down for a couple hours and then around 11 folded all of the clean laundry in our apartment – about four baskets full – before making lunch for my husband. We caught up on a few of our shows that we had fallen behind on and then he fell back asleep. I took this opportunity to do some work I hadn’t been able to get to during the week. I don’t like being behind and I finally had a three hour block where my headache was under control and I felt focused. That has been one of my major problems this last month that I didn’t even realize was happening until today – I have been completely unable to focus or concentrate on something for very long and I have been confused a lot more easily than usual.

Anyways, my day was productive and I felt accomplished. The only downfall, besides the massive headaches, is that I couldn’t manage to make it through my shower tonight. It felt like someone was sitting on my lungs. I tried pointing the water off to the side so it hit the wall instead of pummeling me in the chest, I tried making the water colder, and I tried just standing for a minute with my arms at my side, but no matter what I did, I couldn’t get my heart to stop fluttering and I couldn’t catch my breath. I would normally be afraid I was relapsing already, but the doctor said the Prednisone can cause the jittery/fluttery feeling.

I had to get out of the shower and sit on the bathroom floor until my heart rate returned to normal. I then proceeded to cry for a solid ten minutes. Why are even the simplest of things so much harder lately? I don’t want a pity party and I don’t want to whine about how life isn’t fair, because it could always be worse and I’ve been blessed with so much in life, but I just wish I could know what’s normal. I wish I could know how much longer things are going to feel this way. I just want answers to questions that have none. For instance, how does one’s immune system just all of a sudden stop recognizing its own RBCs and platelets? Is there a cause? Is there something I could have done to prevent this? Is there a chance my immune system will ever reverse its decision to hate itself? I want to know more but ES is so rare that there is little to no research on cause, prognosis, or effective treatments. Every patient responds differently to the medications and it is essentially a guessing game – trial and error.

At this point, all I care is that I can get something for this headache because the Tylenol isn’t cutting it.

The Busy Saturday

Posted on June 18, 2016

Around 9:30 I called my insurance company to check on the status of my IVIG request. After being transferred a few times they told me that the request was made on Wednesday (not Tuesday end of day as I had thought) and it takes 2-3 business days to process and approve (Thursday, Friday, Monday). She said to call back Monday and check on the status of the request, but my guess is that the insurance company will approve it Monday and tell the doctor who will then call me asking to start on Tuesday. It’s actually better that I get a full day’s work in on Monday anyways.

At 10:30 I got a haircut. I hadn’t had one since October!

I chopped my hair to shoulder length (a little past) and then went to lunch at Panera with my mother-in-law and sister-in-law. After lunch we walked from Panera to the mall entrance and my heart started fluttering. The pulse oximeter read 155+. It scared the hell out of me. Once I finally calmed down, we went into the mall to shop for a couple of hours. After being in there an hour or so I started to get very sweaty and overheated. Sweat was literally pouring off of me and running into my eyes. I sat down in front of a fan in the changing room for ten minutes and drank some water. Finally, my pulse returned to normal and I was able to continue shopping.

When I went to go to bed tonight, my husband’s heart was fluttering and he was having chest pains and vomiting so I took him to the ER in Milford. Luckily, everything looked normal and after a bag of IV fluids he was feeling better. The nurse and I spent most of the time talking about my condition instead. I keep forgetting the rarity and severity of my illness until I start describing it. Doctors and nurses seem fascinated by my condition, which I am not sure how to interpret. I talk about my treatment and diagnosis so casually and openly. It’s hard to know if I still haven’t really absorbed any of it or if I’m being optimistic for the first time in my life. Regardless, I am glad my husband is okay. After the month I’ve been having, it was nice to not be the one in the hospital bed.