ultrasound | Me, Myself, and Evan's

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.

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.

Posts Tagged with ultrasound

The Work Clearance

The Two-Week Platelet Check