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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 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.

The Medications

Posted on June 4, 2016

Thursday, June 2nd I started my medications – 1 mg folic acid, 40 mg Protonix (to aid in the protection of my stomach lining and prevention of ulcers due to the strength of the steroids), and 100 mg Prednisone.

My pee was dark this morning and I started panicking that I was already relapsing. It is going to be hard to tell the difference between symptoms and side effects for a little while as my body adjusts to the medications.