solumedrol | Me, Myself, and Evan's

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 First Transfusion

Posted on June 3, 2016

With a preliminary diagnosis of Hemolytic Anemia, there were still a large number of unanswered questions. The most important thing, regardless of the cause of the anemia, was to figure out my blood type and get a match from the local blood bank so that I could receive a red blood cell (RBC) transfusion. My cells needed a boost. The initial lab work showed that I was A Positive, but that my blood had multiple antibodies in it, making my blood type rare. This meant the lab had to draw another vial to be sent to the Red Cross in Rochester for further testing. A courier literally drove to the hospital in a van to collect my sample and drive it the four hours to Rochester.

While waiting for a transfusion, the lab set out to find the cause of my hemolytic anemia. There are three causes for low hemoglobin: stunted creation of red blood cells, premature destruction of red blood cells, and internal bleeding (excessive loss of red blood cells). Creation of RBCs happens in the bone marrow. If creation is low, treatment usually involves a bone marrow biopsy and eventual transplant. Thankfully, in my case, my lab work showed that my young red blood cell (retic) count was high. My bone marrow was working overtime to try to get enough red blood cells into my bloodstream. Unfortunately, my body was destroying these red blood cells faster than my bone marrow could produce them.

A transfusion was the only option. I was admitted to the hospital around 4:30 PM on Saturday, May 28th and it took until the morning for a transfusion. During that time, my symptoms grew increasingly worse. My platelet count dropped to 33,000 and my hemoglobin dropped to 4.2. I officially had about one-third of the amount of red blood cells that I should have. I didn’t know it at the time, but my aunt and mother, who drove up Saturday evening and spent the night at the hospital, were very nervous about me even making it through the night. A code went off in another patient’s room and my aunt jolted up thinking the worst. The doctors talked about moving me to the ICU instead of the cardiac ward, but I wouldn’t have been able to have nearly as many visitors. I was glad I didn’t know the severity of my condition at the time. It would have made my 18-hour wait for a transfusion even more excruciating.

Saturday night was a struggle. Anytime I had to use the bathroom, I needed a nurse to wheel me into the bathroom in a wheelchair, wait outside the door, and wheel me back to bed. This was because of my oxygen levels and tachycardia. Also, I only got shakier and more jaundiced through the night. The reason my levels dropped to 4.2 by morning was because I had been given three IV bags of fluids and all of the fluid was diluting what good blood I did have left.

My blood type was rare and they didn’t have time to check out-of-state for a perfect match so they pumped two units of the “least incompatible” blood into my system. The transfusion took about two hours per unit. Thankfully, I didn’t have any of the side effects that can come with a transfusion, probably due to the other medications they had me taking to prevent such a reaction: folic acid, Tylenol (to reduce the risk of fever), steroids (to suppress the immune system and keep it from killing these new cells), & Benadryl (to reduce the risk of an allergic reaction).

The doctor expects that with each unit of blood that is transfused, a patient’s hemoglobin will go up one point. An hour after the transfusion, it should have been at 6.2, but was instead at 7.2! Hooray! My aunt and my mother helped me freshen up, got me some food, and then drove back home Sunday night. As long as the steroids were keeping my numbers steady in the morning, I was good to go!

Sunday night I was still being carted to the bathroom in the wheelchair, which turned out to be a good thing, since it meant the nurse knew where I was at all times. I got up to go to the bathroom and while I was in there, my heart rate spiked to 150 and ICU (the team that was in charge of my portable heart monitor and tracking my heart rate) called the nurse in a panic. Luckily, she knew where I was and was able to get to me and make sure I was okay.

The only reaction I was having from the steroids on Sunday was extreme hot flashes and sweating. The nurse helped arrange ice packs around me like an igloo so I could sleep comfortably and my husband stayed with me until I fell asleep.