blood draw | 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 Crazy Lab Charge

Posted on July 2, 2016

My insurance company mails me a paper copy of each claim or service rendered once a decision has been made. It always shows the amount/breakdown of what the provider charged, how much of it insurance paid for, and how much I owe. Usually these show up in the mail and I can throw them away because I have already paid the copay in-office and/or I don’t owe anything. I happened to open yesterday’s and it was for the lab work I had done at the original hematologist’s office – the lab work I never even saw, the lab work that was taken by the lady who didn’t wear gloves. Despite the fact that I made it abundantly clear to the hematologist that my vials needed to be sent out to either Quest or LabCorp, she sent them for testing at some random, local lab that isn’t covered by insurance. As a result, the paperwork I got from the insurance company shows they covered none of the cost and I owe almost $4,500! For lab work?! She only took five vials of blood! What in the hell costs $4,500 to test?! Did she combine my blood with liquid gold? I don’t understand.

The insurance paperwork says on it “this is not a bill”, but I know that means the bill from the lab is on its way. This could get interesting because there is no way in hell I’m paying a cent of it. I told the hematologist flat out that the blood needed to be sent to Quest or LabCorp because those are the only two labs my insurance covers AND they cover them in full – I shouldn’t even owe a copay for lab work. Somehow, this crazy lady took it upon herself to completely ignore my instructions and send the vials wherever she damn well pleased. I’m not paying $4,500 for lab results I didn’t even receive just because she was too lazy to follow directions. Quest & LabCorp are probably the two largest diagnostic lab chains in the nation – it should have been a very simple request. I’m not sure what happens when I get the bill – do I fight it out with the old hematologist, the laboratory, or insurance? Do I get my company’s HR Director involved? I’m already getting anxiety and the bill hasn’t even come yet. I don’t need this added stress right now. UGH.

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 Third Treatment

Posted on June 24, 20161 Comment

When I woke up this morning, I immediately noticed that yesterday’s infusion spot was bruised/discolored, warm to the touch, and swollen. Also, I was short of breath, so I was a little nervous that my hemoglobin levels had dropped again, but this morning’s blood work showed my hemoglobin was back up to 11.0. I’m almost at a “normal” level! I showed the bruise to the nurses and told them about the shortness of breath I had been feeling and they determined it was merely a reaction to yesterday’s infusion.

The nurse this morning chose a vein on my left forearm for my blood draw and IV. She drew three vials in order to run a full CBC, as per the doctor’s instructions. The results showed that after only two days of the IVIG treatments my platelets were up to 59,000! That is the highest my platelets have been in months and I’m only halfway through my infusions!!! After the blood draw, the nurse started the IV fluids and I felt an immediate sharp, stabbing pain in my arm. It turns out the vein blew up. It isn’t dangerous, but it means the nurse had to immediately remove the IV and find a new vein for the day. The blown vein is something I hope to never have to endure again – it continued to throb for a half hour or so.

The nurse chose a vein in my right forearm, so I had to keep my arm facing up most of the day, but it wasn’t so bad. The Benadryl burned a little when it went through the IV today, but I think I was still just on edge from the blown vein. Between the swollen green bruise on the back of my forearm from yesterday’s infusion site, the blown vein in my left forearm, and the needle marks and petechiae covering both elbows, I feel like a human pincushion.

I just pray that some of these heal by Monday because I am running out of good veins.

The doctor wasn’t in today and I still needed to ask about this weekend’s Prednisone dosage, so I had to speak with the on-call hematologist. I explained that I’d been on the 100 mg dose for a month and was worried that taking no steroids at all over the weekend would cause withdrawal. She completely agreed and told me to take 80 mg Saturday and 80 mg on Sunday and then my doctor would likely decrease my dosage to 60 mg on Monday. Since the pills I have are 50 mg pills, she said I could simply take one and a half each day (75 mg). Easy-peasy! I’m not so sure I’ll be ready to decrease to 60 mg on Monday, but I’ll worry about that when the time comes.

Today was a slow day at the hematology center. For the first time all week, I was surrounded by patients that wanted to talk, but another patient was talking loudly on her phone right next to my face the entire time she was being transfused. It was extremely rude and frustrating. Taking a quick phone call is one thing, but talking loudly over a TV and other patients trying to converse is annoying as hell. SHH. Thankfully, she was just receiving iron so her transfusion only took about a half hour. It was refreshing to talk to other patients afterwards about their conditions and treatments. I felt less alone.

Apparently the office closes early on Fridays and the nurses and doctors can leave as soon as their appointments are done. By 1:30 I was the only patient left for the day, so the nurse had to stay another two hours just for me. The room felt sad and lonely with me in the corner surrounded by empty recliners, but I was able to watch Netflix on my laptop. I threw on “House” and curled up with a blankie and some snacks.

10:45 AM – 11:55 AM : Vial 1 : 1 hr, 10 mins
11:55 AM – 1:05 PM : Vial 2 : 1 hr, 10 mins
1:05 PM – 2:10 PM : Vial 3 : 1 hr, 5 mins
2:10 PM – 3:05 PM : Vial 4 : 1 hr, 5 mins
Total time required for IVIG treatment : 4 hrs, 30 mins

My husband picked me up around 3:30 PM and we headed back to our apartment. I had a little bit of a headache, but nothing like yesterday’s. The only difference between Wednesday/today and Thursday was the time of day the Solu-Medrol was administered. I am inclined to believe that yesterday’s side effects were due to receiving the steroids in the afternoon, rather than the morning. I’ll make sure to ask for them first thing on Monday.

The Halfway Point!

Posted on June 23, 2016

I arrived a little early to my appointment today because my husband had a 10 AM meeting he needed to be at the office for and the hematology center was on the way. When I arrived I asked the receptionist about a sign I had seen in the waiting room mentioning an online portal to view visit summaries, lab results, and future appointment times. She took down my email address and sent me a registration link, which I was able to click on and fill out while waiting for my appointment. Voila! Easy access to all of my lab reports with the touch of a button! What would the world be like without technology?!

The nurse called me back at 10 and placed me in the corner recliner. I immediately plugged in my phone. Upon seeing all the needle marks and petechiae on both of my elbows she decided to use a vein on the back of my forearm. I was nervous about this spot because I hadn’t had an IV there before, but I came to love it. The needle prick was less painful and it was ten times easier to move around. I had almost complete use of my arm. It was also nice to be able to lay my arm flat, rather than turned upright. The only downside was that I could feel the IV when I moved my arm around and it seemed less secure, like it could fall out more easily.

The nurse took a vial of blood to check my numbers and then attached the IV to a bag of fluids. For some reason, though, the tubing/drip was defective and blood started leaving my arm and filling the tubing. The nurse immediately recognized the problem and switched out the tubing. Unfortunately, she needed to unscrew the tube in order to replace it, which meant blood from both the tubing and the active IV leaked onto my arm and her pants when she made the switch. Thankfully, she was quick to get the new tubing screwed in and the IV bag started to drip properly. Crisis averted!

The nurse gave me two Tylenol to prevent a headache and fever and then began my Benadryl drip around 10:20. In the meantime, my numbers came back from my blood work. My hemoglobin dropped to 10.3, which is still a fairly safe number, but it isn’t great that it dropped. Hopefully tomorrow’s number holds steady. My platelets, after one day of IVIG, were up from 16,000 to 33,000! They more than doubled! I can’t wait to see how they look in the morning! This treatment might actually be working!!!

I was excited because the TV was set to USA again and the Law & Order : SVU marathon raged on. About a half hour in another patient asked for a channel change, though, so that was a bummer. I put in my headphones, curled up with a blankie, and fell asleep listening to the Hamilton soundtrack. Benadryl makes me so sleepy!

By the time I woke up it was 12:15 and I was already on my second vial!

10:40 AM – 11:55 AM : Vial 1 : 1 hr, 15 mins
11:55 AM – 1:00 PM : Vial 2 : 1 hr, 5 mins
1:00 PM – 2:05 PM : Vial 3 : 1 hr, 5 mins
2:05 PM – 3:10 PM : Vial 4 : 1 hr, 5 mins
Total time required for IVIG treatment : 4 hrs, 30 mins

Without anything good on TV, the afternoon dragged on once I woke up. I couldn’t manage to fall back asleep. The only remotely interesting thing that happened was that one of the other patients in the room had an allergic reaction to Rituxan. The nurses had to carry her out of the bathroom and call an ambulance. Four EMTs crammed into our little room full of recliners and IV poles to transfer her to a stretcher and wheel her out. I know everyone reacts differently to medications, but I’m glad Rituxan is my last resort and not an immediate possibility – it seems pretty strong. The whole time this was happening I had to use the restroom, but the EMTs were blocking the path, so I anxiously awaited their departure. The rest of the afternoon remained uneventful.

The nurse waited to give me the Solu-Medrol until the end of treatment this time. The drip finished by 3:20. I think she gave it to me at the end today because when she gave it to me in the morning yesterday my hot flashes hit early afternoon while I was still in the chair. She wanted to avoid the reaction I think. Unfortunately all it did was delay the side effects until about 8pm, which meant I got hit with the steroid side effects and the IVIG side effects at the same time.

As I left the hematology center I felt a faint pounding in my head, but it was mostly just uncomfortable, rather than painful. By the time I got home, though, and tried to do some work at my desk I felt shaky and my head was throbbing. I had to lie down in bed for a little while. The headache was only on one side of my head and it felt as though someone was pushing on it. Unfortunately, my nap made my headache worse somehow. I sat at the computer to watch Netflix while I ate dinner, but I had to go back to bed immediately after because the bright screen was killing my eyes. I fell asleep for a little bit. As I am writing this, I have no noticeable side effects from any of the medications. Hopefully I slept them off.

In the morning, I need to remember to ask my doctor for a prescription for painkillers to combat the wicked headache. I also need to double check that I’m not supposed to be taking any steroids at all over the weekend – won’t that send me into withdrawal? It doesn’t seem like a good idea, but if I double check with him and he confirms that I heard him correctly, I’ll trust him.

Two days down, two to go! Halfway there!

The Start of IVIG

Posted on June 22, 20162 Comments

I arrived at the hematology center at 10:00 AM today to start my first round of IVIG (Intravenous Immune Globulin). They were a little overbooked and didn’t have a chair for me until almost 11 so I had to hangout in the waiting room for an hour. Once they finally called me back I was able to relax. They began by drawing three vials of blood. They ran one of the vials through the machine so they could get a platelet baseline prior to starting treatment. I had just had my platelet count checked yesterday around 1:30 PM (approximately 22 hours earlier) and the count was 22,000. Overnight they dropped to 16,000 – UGH! Good thing the whole point of IVIG is to increase my platelet count!

The nurses started me on an IV drip and gave me two Tylenol pills to take to reduce the risk of headache or fever. Once the IV fluids finished they switched me to a Benadryl drip. The Benadryl is meant to reduce the risk of an allergic reaction to the IVIG, but all it seemed to do was make me incredibly sleepy. Finally, the nurse attached a bag of Solu-Medrol, which is intravenous steroids. This was in place of taking my Prednisone this morning. I’ll be receiving the IV steroids in large doses tomorrow and Friday, as well. Starting Monday the doctor wants to decrease my dose, which means I can begin the process of tapering off the Prednisone!

After the Solu-Medrol finished I was finally ready to begin the IVIG. The nurse explained to me that I would be receiving four Carimune NF 12gm vials each day. The first vial is given slowly so that the nursing staff can look for/stop any allergic reactions before they escalate. Luckily, I didn’t have any adverse reactions and they were able to speed up the drip with each vial.

12:25 PM – 1:55 PM : Vial 1 : 1 hr, 30 mins
1:55 PM – 3:05 PM : Vial 2 : 1 hr, 10 mins
3:05 PM – 4:10 PM : Vial 3 : 1 hr, 5 mins
4:10 PM – 5:05 PM : Vial 4 : 0 hr, 55 mins
Total time required for IVIG treatment : 4 hrs, 40 mins

I knew I was going to be sitting in a recliner for hours, so I brought with me a backpack of snacks and things to do. I had the essentials – a book, my laptop & charger, phone & charger, and a puzzle book. I was right next to two open outlets, so I used one and plugged in my phone. I fully intended to watch Netflix on my laptop the whole time, but the WiFi was spotty (as was the cell service). Luckily, there was a large flat screen TV in the front of the room that was tuned to USA, which had a Law & Order : SVU marathon on all day. Watching SVU made the time go by a little faster. The most tedious part of the whole treatment was simply trying to keep my arm straight. I have one really good vein that nurses always choose to place the IV in and, unfortunately, it is on my dominant arm right at my elbow. Because of this, I can’t bend that arm much during treatment or the IV bag/vial stops dripping. This also means I have very limited use of my dominant hand during this time. Conclusion: I am not going to bother bringing the puzzle book tomorrow because writing in it will be far too difficult. Since the WiFi is so spotty, I might not bother with my laptop either. I think the plan will be to just watch whatever is on TV, nap, and play games on my phone.

My husband picked me up from the hematology center a little before 5:30 PM. I don’t want to jinx it, but it has been about four hours since then and I haven’t had any side effects from the IVIG at all! It hasn’t made me tired and I never got the massive headache that the majority of patients get. I finally feel like I was on the right side of a statistic today! Even if I get the headache after tomorrow’s IVIG, I’m just excited today was side-effect-free!

Here is the schedule for the rest of the treatment:
Thursday, 10:00 AM
Friday, 9:45 AM
Monday, 9:00 AM

Wish me luck! More to come tomorrow!

The Game Plan

Posted on June 21, 20162 Comments

I spoke too soon… treatment will begin tomorrow (Wednesday) at 10:00 AM. I will be at the hematology center for 5-6 hours a day Wednesday, Thursday, Friday, & Monday. On Friday the doctor will check my platelet count to make sure the treatment is working. From what I understand, the IVIG is meant to give a quick boost to my platelets and my numbers should skyrocket.

When I called the hematology office this morning to see if I would be starting treatment today, I was sure to describe my spontaneous bruising. The doctor had his staff call me around 1:00 to come in for blood work. My hemoglobin was up to 11.1! The steroids definitely seem to be working for the RBCs! My platelets, however, were down to 22,000. They dropped 9,000 in five days. Once I noticed the spontaneous bruising, I had a feeling they had dropped, so I’m not all that surprised. The doctor said that since I’m starting IVIG in less than 24 hours he’s not concerned about the drop, but that if any of the following occur I should go straight to the ER:

A large unexplained bruise
Bleeding from the gums
Nose bleed

After IVIG ends on Monday, the doctor is likely to schedule an appointment with me for Tuesday or Wednesday to check my counts and start tapering me off the steroids. I am a little nervous about my numbers dropping once I start tapering off the Prednisone, but the side effects are becoming a nuisance and I can’t stay on the medication long-term. The best case scenario here would be a very successful IVIG treatment, 2-3 weeks of tapering off the steroids and getting regular blood draws, and then remission! If my numbers hold steady as I taper off, I should definitely be set for a while! Maybe then blood draws will only be once a week or once a month! Say a prayer that this course of treatment is going to do the trick!

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.