It Comes from Rabbits?! The ATG Experience – Part Two

This post is a continuation of my last.

Before I go any further describing my experience receiving ATG, I would like to issue a disclaimer.  My journey with drug therapy is personal and not necessarily indicative of what every Aplastic Anemia patient undergoes.  Every patient’s body is different.  Some people breeze through ATG without a hitch, while others suffer quite a few side effects.  I must confess that ATG wasn’t easy for me – especially in the first 3 weeks.  BUT – I survived, am doing well, and if you are an AAer thinking of trying this therapy, I in no way wish to dissuade you or make you think you’ll go through what I experienced.  While I am honest about the travails and pitfalls of aggressive drug therapy, ATG can be a great tool to combat Aplastic Anemia and it’s definitely a good treatment.

And now, on to the ATG Experience!  According to the Daily Med:

“Anti-thymocyte Globulin (Rabbit) is a purified, pasteurized, gamma immune globulin, obtained by immunization of rabbits with human thymocytes. This immunosuppressive product contains cytotoxic antibodies directed against antigens expressed on human T-lymphocytes.”

Aplastic Anemia Blog - Rabbit

This is probably not the rabbit they used.

In layman’s terms, scientists gave some rabbits human t-cells, watched the rabbits’ immune systems kill them (the t-cells, not the scientists), extracted the antibodies the rabbits’ bodies created, and administered the antibodies to human patients.  This resulted in the rabbits’ antibodies killing the human white cells.  SCIENCE!

By the way, this can also be done with horses.

As I explained in my second post, the goal of ATG is to kill the white blood cells, including the faulty T-cells, which are attacking the body’s blood components (red cells, white cells, and platelets).  If the bone marrow and stem cells can restart, the body will begin producing its own healthy cells again.

Aplastic Anemia Blog - PICC

This is what's in my body now!

On Monday, February 28th, 2011, I received my first of five rounds of ATG.  The drug is administered intravenously and takes 10 hours to infuse.  Fortunately, I no longer require standard IV lines, as I had a PICC line inserted during my last hospital stay.  PICC stands for peripherally inserted central catheter, and it is a tube that runs through my left arm to the top of my heart.  There are two access valves that stick out of the underside of my arm that are used for drawing blood and administering medicines.  It’s a relatively painless procedure and most of the time I don’t even know the line is there.  The beauty of the PICC line is that any medicines inserted through the valves go directly into my circulatory system.  Receiving painkillers through this method is like getting hit over the head with a frying pan.  But more pleasant.  If anyone wants to know more about my PICC line experience, feel free to email me.

Before I received the ATG, I was given a shot of Benadryl through my PICC line.  Normally, Benedryl makes me drowsy after about 45 minutes.  However, receiving it intravenously is like getting roofied.  I fell asleep almost immediately and my nurse, Joshua, began the ATG.  I woke up about an hour later feeling cold.  Within seconds, I began to shake with chills.  The shaking became more and more violent until I was seizing.  Joshua, who had stayed in the room with me for the first hour of ATG as per protocol, was a star.  I was terrified and unable to stop violently quaking and shaking.  He told me that I was experiencing a common side effect called rigors (yes, like rigor mortis), and that I needed to try to breathe and relax.  Relaxing is a difficult thing to do when you’re biting your tongue and thrashing around in a bed.  Luckily, he was really soothing and he and the charge nurse stopped the infusion and gave me a shot of Demerol in my PICC line.  Apparently, Demerol, a narcotic painkiller, is known to relieve the symptoms of rigors.  Within five minutes, the tremors stopped.  After a short break, we resumed the infusion, but at a slower rate.  My subsequent infusions were all preceded by Benadryl and Demerol and administered at the slower speed.  Thankfully, I never had that reaction again.

The first infusion was definitely the hardest on my body.  As the ATG worked its magic (killing what was left of my immune system), my body had an absolute fit.  By midnight, I spiked a fever of nearly 104.  My nurses removed my blankets and surrounded me with cold packs to bring my temperature down.  I was also given Tylenol to reduce the fever.  Unfortunately, nothing helped while I was receiving the drug.  Since we slowed down the infusion rate to stop the rigors, I was receiving the ATG until 2AM.

I was also experiencing serious pain.  Every bone in my body ached and hurt.  My legs were the most painful.  It felt like extreme cramping, but deeper down.  I cried out and constantly repeated to myself “I won’t remember the pain.  I won’t remember the pain.”  It was a little mantra I repeated to remind myself that this pain was only temporary.  All I could do was tell myself that my memory would remember the experience of pain, but not the sensation itself.  When the infusion finally stopped, the pain began to subside.  My fever also began to break.  I finally fell asleep knowing Day One was down.

By the next morning, I was preparing myself for Round Two.  My doctor visited me and told me that the ATG had worked perfectly.  I went from around 2.0 white blood cells (normal range is 4-11) to 0.0.  He assured me that the first ATG infusion is always the worst, and the next four wouldn’t be nearly as traumatic.  He was partially right.  I didn’t have the same extremely high fever or bone pain as on the first night, but I did develop a nasty, itchy rash on my torso and a few other delightful side effects.

On early Wednesday morning, two ATG infusions down, I woke up with terrible stomach pains.  They got worse and worse and no one was sure why.  I was given an x-ray and sent down to the bowels of the hospital for a CT scan in terrible pain and sporting another fever.  I was taken off all foods and declared NPO (Nil Per Os – Latin for Nothing By Mouth).  No food, no water.  Intravenous liquid only.  By the late afternoon, I was doing better, although I felt constant pressure on my chest and stomach.  At least the acute pain was gone.  The CT scan showed I had some inflammation of the large intestine, but no conclusive cause for the pain was ever determined.

Fortunately, the rest of the infusion week had very few developments.  My aches and pains were managed, the rash was doing better, and despite days of lingering fevers, I was generally doing OK.

After about three weeks in the hospital, I noticed a pain in my neck on the right side.  I figured I had pulled a muscle or had done a number on my back from sitting in a hospital bed for so long.  As the pain grew worse I realized this was more than a pulled muscle.  My neck swelled and became unbearably painful.  Every little movement caused agony.  My throat closed up and I could no longer eat or drink.  I was given a suction tube to remove moisture from my throat, since I was now unable to swallow even my own saliva.  I was given morphine for the pain, but it did little to help.  The problem was the swelling.  Morphine hits the brain’s pain receptors, but doesn’t actually reduce inflammation.  My lymphatic system had clearly gone haywire.  The doctors weren’t sure what was causing this reaction.  I was tested for any number of diseases.  Infectious Disease specialists consulted to determine the cause.  I was given an MRI so they could get a clear look at my head and neck.  After the MRI, the doctor told me, “No wonder you said it’s like trying to swallow glass.  Your esophagus has closed up from the inside.”  When I looked in the mirror, I had large lumps on the right side of my neck where my lymph nodes were enlarged.

The doctors began to worry about spinal meningitis, although I didn’t have any classical signs.  When they proposed a spinal tap, I put my foot down.  I refused it and told them they better give me Tylenol ASAP.  You see, as an Aplastic Anemia sufferer, almost all anti-inflammatories contain components that thin blood.  So ibuprophin, Aleve, and aspirin are out.  Tylenol masks fevers, so there was an order not to administer it to me for pain and inflammation – only fevers.  Finally, after consulting with the doctor, we agreed on a course of Extra Strength Tylenol, morphine, and prednisone (a steroid).  Within two days, the inflammation began to go down and the pain was greatly reduced.

The doctors finally had a Eureka! moment and a cause for the crazy lymphatic reaction was determined.  I am a carrier of the Epstein-Barr Virus, the disease that causes infectious mononucleosis.  I had always heard of mono as being a disease that lasts for months on end and causes sufferers to sleep for days and days.  Apparently, that is not normally the case.  Almost all adults (90-95%) are carriers of the virus and it usually manifests as a sore throat or mild flu every once in a while.  In a healthy body, the immune system is able to fight the virus and suppress it.  It is never eliminated like a cold or flu, as once one is a carrier, they will be so for the rest of their life.  Since I no longer had an immune system, the Epstein-Barr was able to take control of my body and give me all sorts of nasty problems.  We also think that it was the reason for my numerous fevers requiring hospitalization post AA diagnosis, as no cause was ever determined for those illnesses.

Aplastic Anemia Blog - Killers

Natural Killers

The good news is that the Epstein-Barr Virus forced my ailing bone marrow and stem cells to create lymphocytes.  There are three kinds of lymphocytes:  T, B, and Natural Killer (my favorite as they sound bad ass).  My T-Lymphocytes were and are being suppressed via cyclosporin, as those are the stupid bastards that went renegade in the first place.  But, the other two kinds of lymphocytes began to build back enough to suppress the Epstein-Barr Virus.

Once the Epstein-Barr was sufficiently suppressed, the next step of ATG began in earnest; waiting.  And waiting.  And waiting.  As an inpatient, my blood was drawn at 6AM every morning to determine what the day’s counts would be.  Each draw held with it the promise that I might start to show signs of recovery.  Slowly but surely I began to see a few signs of improvement.  My white cells went from 0.0 to 0.1 to 0.2 over the course of six days.  I hoped this was the beginning of a huge upward trend.

Closely watching the CBC (Complete Blood Count) numbers is tricky and can lead to serious disappointment and discouragement.  After seeing initial movement upwards, the counts stopped ascending.  Each morning blood draw became more and more stressful as I hoped to hear good news and each time the hope was dashed.

My specialists and main team of doctors only visited me during their afternoon rounds.  First year residents handled the rest of my care.  Oh, first year residents.  They are generally well-meaning, but they often have zero people skills.  These are people younger than me who have spent the past eight years of their lives with their noses in books trying to learn to be doctors.  They have yet to have any real life experience dealing with patients.  I had four regular residents while I was an inpatient, and none of them understood the gravity of my situation and how important those morning CBCs were for my spirits.  They would burst in before the sun came up, and with the ease of one person telling another they’re going for a smoke break, happily tell me the counts had dropped.  I desperately wanted them to understand that to me, those counts meant everything.  One resident, after a month of being my main doctor, finally seemed to understand my position and truly sympathized.  Then he was transferred to the VA hospital.  So much for that.

By the end of March, I had been hospitalized for over a month and was chomping at the bit to go home, with or without recovering blood counts.  I was very concerned I would not be permitted to leave, as I was still severely immuno-compromised.  I wasn’t even allowed outside (I hadn’t been outdoors since being admitted), and could only walk the ward floor with a mask.  Finally, the doctors felt that I was stable enough (three weeks fever and symptom free) to be treated as an outpatient, despite my lack of an immune system.  I still required regular platelet and blood transfusions, but I didn’t need to be in the hospital to receive them.  Nine days after my release was proposed, I was sent home with strict instructions to avoid germ exposure to the best of my ability and a fistful of prescriptions.  It was Wednesday, April 6th – almost six weeks since I was first admitted to the hospital for the ATG infusions.

I have often been asked how I managed to survive six weeks of hospitalization, two months total of inpatient care since diagnosis, and extreme pain and discomfort.  The answer is simple.  There is no other option.  You get through it because you have to get through it.  You adapt.  You cry when you feel like it, yell when you want, smile as often as you can, and get through it.  I look back now, a month after being released, and those two months already seem like odd memories – strange blips in time.  My hospital time may not be over.  I am fully aware that I may need to be re-admitted sometime soon.  However, I know that I can make it through should I need to go back.  Survival is not a choice – it’s the only way.  And I’ll do it.

Coming up next…..The Numbers Game:  My current status, setbacks, and progress.

1 Comment (+add yours?)

  1. Trackback: Bone Marrow Transplant: Day -4 and Day -3 « Aplastic Anemia Blog – Marrowly Rolling Along

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