stomach ache | Me, Myself, and Evan's

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 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 Symptoms

Posted on June 2, 2016

Leading up to my ER visit, I had a variety of symptoms that all presented themselves at different times and were seemingly unrelated. All of them could be explained away by outside forces – my crazy diet, moving apartments (lifting boxes and furniture), etc. It wasn’t until I was on my way to the emergency room that I realized everything had been a symptom. My body was shutting down and was trying to warn me, but I didn’t even think twice about it. The dates below are when I first noticed a symptom or something out of the ordinary, but it may have been going on much longer and I was too oblivious to notice.

Tuesday, May 17th
My husband and I signed a lease for a new apartment on May 9th and spent the next couple of weeks packing up our old apartment and driving things to our new place. On Tuesday the 17th, I didn’t think twice about the lower back pain I was feeling. It was fairly intense and I had no history of back pain, but it had been a few years since I’d gone through the stress and effort of moving, so I figured I was just a little sore.

Thursday, May 19th
I had a successful weigh in on my crazy protein-heavy diet and headed back to NJ with my husband. My crossbody purse felt heavy on my chest and I was very short of breath. It was late at night, I’d had a long day, and I have asthma, so I didn’t think much of it. I stopped frequently to catch my breath on the walk home. My chest felt tight, deep breathing wasn’t working, and my heart was racing (tachycardia).

Simultaneously, I was experiencing extreme muscle fatigue. I had only walked a couple of blocks, but it felt like I’d been walking for miles. My arms and legs felt weary and heavy like they were dragging me down. Again, I just assumed I was extremely tired from work and moving.

Saturday, May 21st
My friend came over to help us go through some boxes and make our place feel a little homier. After we returned from a walk around our complex, I started having an awful stomachache and a complete loss of appetite. I had to leave the room when my husband cooked dinner because the look and smell of chicken was making me physically ill. My food aversions only intensified over the next week. It was hard to get myself to eat anything at all and my caloric intake barely hovered around 500 calories. I assumed I was simply sick of the lean proteins I had been eating day-in and day-out for the last six weeks. The only thing I could manage to eat was scrambled eggs.

Monday, May 23rd
I still felt pretty crappy so I talked to some friends at work about my symptoms and they all had the same reaction – sounds like morning sickness. My friend and I bought a test from Duane Reade and set a timer… Negative! Thank goodness! Some of my symptoms just seemed to mirror pregnancy, I suppose.

I came home from work and almost immediately went to bed. I laid down for a “quick nap” around 7:00 PM and was awoken by my husband at midnight telling me I needed to eat something for dinner. Eggs again!

Wednesday, May 25th
My head was throbbing. I have had headaches before and I’ve been known to have the occasional migraine, but this was something different. It felt as though both sides of my head were being squeezed together and I could feel my heartbeat in my ears. I drank some water, chalked it up to stress, and let it go away on its own. That night I thought I had a fever, but we couldn’t find the thermometer, so I cranked up the A/C and tried to sleep through it.

Thursday, May 26th
The headache was back in full force, so I took a couple of Aleve and hoped for the best. It wasn’t until later that day that I got a little nervous. My urine had become a dark orange color. The vitamins I was on were known to make urine very bright/neon like a highlighter, but this was something different. I had no idea that dark urine was a sign of anything, so I didn’t worry about it. I figured I had eaten something weird – maybe something with food coloring in it.

Friday, May 27th
The first thing I noticed when I woke up was that my eyes seemed fairly yellow (yellow sclera). Perhaps I just didn’t sleep well. I forced myself out the door and counted down to the long Memorial Day weekend ahead simply relaxing by the lake.

At work my headache raged again. I took two Tylenol and just hoped to make it through the day. Around lunchtime I noticed that I was sweating profusely. This isn’t unusual for me, though. I tell people, “I sweat when I smile”. It has always been an issue for me. It wasn’t until I came back from the bathroom and my coworkers started telling me I looked pale that I got nervous. I headed to Dunkin’ Donuts and grabbed myself a bagel. I didn’t want to cheat on my diet because I had been doing so well, but I knew I needed to eat something – anything. I scarfed down the bagel and took the train back to NJ.

On the ride to the cottage I napped and tried to ignore my stomachache. It didn’t hurt when I was sleeping, so sleeping was my go-to. We made it safely to the lake and my mother-in-law saw how pale I was and immediately suggested a trip to the ER. I was stubborn and exhausted and just wanted to go to bed, so I forced down a protein shake and agreed I would go in the morning if my symptoms hadn’t subsided.

Saturday, May 28th
I called my aunt, a Nurse Practitioner, when I woke up and explained my symptoms to her. She is always very upfront and practical, especially with medical advice, so I knew when she insisted I go to the emergency room, I needed to go. At the time, I still didn’t realize how serious my symptoms were.