March 9, 2016 IVIG (hopeful)
If you follow me on Instagram or if you are a personal friend then you know that 10 days ago my world imploded. And with the collapse of my health, so went the ground from under us. At least that is how it felt.
It was was ugly, profoundly painful, frightening and sad.
Wednesday, March 9th, I had an infusion called an IVIG treatment. Simply, IVIG is an intravenous method of boosting a patient’s immune system with a mixture of plasma from mass donors.
It works for wonders for many people, several of whom I know.
However, when it goes wrong, it can go very wrong. And that is what happened with me.
I got the treatment because my immune system is severely suppressed. Our immune systems are made up of different types of cells and antibodies. Most people understand that White Blood Cells (WBC) are part of our immune system. In my case, my WBC have not always been reliable because of the leukemia. Now that the leukemia is in remission my WBC count is healthy so that part of my immune system is working well.
Another critical part of our immune system consists of antibodies which fight off infections and viruses. Two of these are Immunoglobulin G (IGG) and Immunoglobulin A (IGA). My IGG level is 386 (normal levels are 694-1618) and my IGA is 36 (normal is 81-463).
That part of my immune system is terribly low and it is why I was unable to fight off the respiratory infection from November through January.
The chemotherapy I take is doing it’s job by keeping leukemia in remission. Unfortunately, it has wiped out my immune system and left me wide open to viruses and infections. For this reason, even though I am back in remission, I usually have to stay at home to avoid germs.
I have been home for the majority of the past 1-1/2 years and I am lonely. You would be too.
One way that people with suppressed IGG levels thrive is by boosting their immune systems through IVIG treatments.
My oncologist was reluctant to try IVIG with me because she was concerned that I would have a severe reaction. However, now that I am in remission from leukemia, I have started to re-enter the community. With my re-entry, I have occasionally had the initial symptoms of respiratory illness again. Recently, when I became symptomatic, my oncologist decided that we needed to try the IVIG.
Going into the procedure I knew that I was at risk for complications because I have a history of migraines.
According to the site nufactor.com, “serious side effects can include acute renal failure, thrombosis, Stevens-Johnson syndrome, serum sickness, aseptic meningitis and anaphylaxis. ***The most severe form of IG-related headache comes from aseptic meningitis, and in fact, patients with a history of migraines appear to be more susceptible to aseptic meningitis. Symptoms, which are severe and similar to meningitis, usually begin a few hours after treatment but can occur up to two days later. They can include severe headache, photo sensitivity, chills, nausea, vomiting, fever and painful eye movement***.”
I hoped and prayed that I would not have adverse effects. However, over the past 15+ years I have learned that God’s answers to my prayers are not always the responses I wish for; nor do they typically play out on my timeline.
Frankly, I don’t understand (fade to me crying)…
The morning of my infusion, my oncologist gave me a prescription for pain medication just in case I started to feel poorly. 24 hours later, not only did I feel poorly, I became wicked sick with the severe side effects of serum sickness.
I was working via telepractice and my headache escalated into a pulsating migraine. The pain was so intense that I was unable to formulate thoughts, words or sentences.
I cancelled my last client. I took Imitrex, pain medication, antihistamine, nausea medication. I lay on our bed with my head on ice packs. My lips began to swell, my eyes turned a glassy shade of shade of pink. Light felt like sharp glass causing me to squint and ultimately close my eyes altogether. My body shook with a low grade fever. My were neck and back were immobilized by pain. By the time I realized that this was more than a migraine, the office of my oncologist was closed.
March 10th (Serum Sickness)
When I called the cancer center, the paging operator put me through to the oncologist on call. Gratefully he knew exactly what was happening to me. With a calm and compassionate tone, he directed me to go to the ER where he was working that night. I was to tell the ER staff to page him and he would give them instructions on how to treat me; he would tell them how to make the horrific reaction stop.
My husband drove me to the ER where we stood in a long registration line and were told that there would be a 3-1/2 to 5 hour wait. I was in a 9/10 level of pain.
When you are in that much pain, you don’t care what you look or sound like. Due to my medical history, I have been at that pain level more than once; the response is primal.
I held my head in my hands and sobbed, I rocked back and forth, I prayed nonsensically, I begged for help, I clawed at my hair and at my husband.
Since my chief complaint was severe headache, a nurse did look at me while we were in the registration line; he checked my facial symmetry to rule out signs of a stroke. I begged him to page the oncologist as I had been instructed. He brought me a wheelchair and reminded us that there was a 3-1/2 to 5 hour wait. There was no acknowledgment of my plea for him to page the oncologist.
When we checked in, tears streaming down my face, I asked the woman at the registration desk to please page the oncologist. With no response to my mention of the oncologist, she told us that there was a 3-1/2 to 5 hour wait. My husband wheeled me to a remote corner where I continued to claw and sob and pray and rock. The pain was horrific.
This was not my worst ER experience. I have been through so much worse, specifically with Crohn’s disease. But the fact that I have been through worse does not diminish that what I went through 10 days ago was almost too much to bear and I feel defeated.
Because I have been both a healthcare provider and a patient for the majority of my adult life I am a forgiving patient. The past 20 years have taught me that even under the best circumstances things can go wrong in the hospital; I have been on both sides of that coin. There are things that went very wrong 15 years ago when I got Crohn’s disease, 9 years ago when I got leukemia and last Thursday night when I had a serum sickness reaction to an infusion that could have sent me into shock or death.
From the moment we got to the ER, I followed directions and told all staff we encountered to page the oncologist on call. After telling 5 people, one nurse finally heard me. She was not even my nurse. She was the nurse who had been sent to me after my first nurse could not get my veins to thread around an IV needle. For various reasons veins will blow out, roll and refuse to thread. This is frustrating for nurses as they need to get IV’s into their patients so they can get labs, fluids and medications started. Thursday night, I was dehydrated and my already small veins, which have been scarred from years of IV’s, refused to cooperate for the first nurse.
I have been through all of this so many times over the past 15 years. During some hospitalizations, my veins have been so worn out that I have been reserved for the IV team; their job is to find veins in the most complicated patients. I know what it is like to have a line inserted into my heart because all the other veins just won’t behave adequately anymore. And I know what it is like to have a nurse in an ER dig through bleeding skin in a search of veins that refuse to thread despite my desperate pleas to stop.
Understandably, my nurse was stressed; it was a long and hectic night in the ER. But in her pursuit of my veins, I felt like she forgot that there was an actual person attached to the bleeding arms in her hands. Her level of annoyance with my veins with palpable. She finally left the room in what was later described by another staff member as a mess: needles on the counters, blood on my arms and the sheets. I felt stripped of dignity.
Something that is very hard about being a patient is that when your body is not working correctly, when you are the source of frustration, you feel guilty. Regardless of how much pain you are in, you still feel responsible for the stress of everyone around you.
That nurse did however send a more experienced nurse to my bedside who sat calmly with me. The second nurse spoke in a soothing voice. My veins relaxed for her and she threaded one without pointlessly shredding skin. She cleaned the blood that the other nurse had left behind. I told her about the oncologist on call and she expressed anger when she learned that nobody had paged him. She stepped outside the curtain of my ER room and we heard her page the oncologist. Within minutes, he returned her page and she came back to my room with a plan.
That night, I watched my heart-rate escalate from the 60’s through the 70’s, 80’s, into the 90’s and occasionally drop down to the 40’s. While I was not the most complicated patient in the ER, I was in distress. Even though the staff knew that I was having a serious reaction to an infusion and they followed the protocol provided by the oncologist, they continued to speak to me as a migraine patient because I have a history of migraines.
My husband found sheets for me, he stroked my head. He gave me ice chips. He rubbed my neck.
Some relief came late that night when the oncologist’s protocol was put into practice: IV steroids and pain medication. Even with the protocol, I left the ER in a 5/9 level of pain but that was certainly better than a 9/10. More than anything, I was terrified that the medication would wear off and the the 9/10 pain level would return.
The doctor sent me home with a prescription for oral prednisone which I took with antihistamine and pain medication for a few days.
I slept hard the first 2 days after my ER visit. My face was white and swollen. My sleep was fitful and I was drenched in sweat. It was the type of sleep that accompanies the breaking of fever. I remember my phone ringing, texts coming through; everything sounded so far away and I was too exhausted to respond.
When I finally did begin to wake up, my heart cracked wide open in sadness. My oncologist had called me and explained that I had Serum Sickness.
“Serum sickness is a reaction that is similar to an allergy. The immune system reacts to medications that contain proteins used to treat immune conditions. Or it can react to antiserum, the liquid part of blood that contains antibodies given to a person to help protect them against germs or poisonous substances.” –Medline Plus
Serum sickness can cause a person to go into anaphylactic shock, it can cause death. It is a serious complication and I will not be able to have this treatment again.
Everyone has really hard times and I know that my personal tragedy just that: my personal tragedy. I also know that I have got to move forward however I am having a very hard time doing it this time.
Five days after my ER trip I turned 44. This has been a difficult birthday for me. I am trying to make peace with the reality that despite my efforts to be healthy, I have been sick for many of my adult years.
15 years ago I had a profound onset of Crohn’s disease. I remember the hospitalizations and pain and procedures. I remember mustering courage and praying and sleeping with a Bible in my bed.
I was told that I was fortunate because I was getting my “thing” out of the way early; people told me that everyone has a “thing” (crisis) and I was getting mine as a young adult which would leave me with a long and healthy life. I took hope in that. I held onto the idea that there would be years of health ahead of me.
And there have been short bouts of normalcy but for the most part, I have been in a battle for health ever since I got Crohn’s 15 years ago.
And I am tired.
Writing usually helps me sort through my emotions and I typically end my blog posts in gratitude or even with an inspirational thought. But I can’t seem to find it this time. Instead, all I can think to do is to ask you to please pray for me. I am so tired. Thank you.