Back from the Almost-Dead… Yet Again

Neutrophils :: Credit: Wikipedia


Well, it seems like I’ve made it through another serious health scare.

The Monday before last, I went in for a routine follow-up visit with my Rheumatologist. As usual, labs were ordered to be sure that my numbers were good. So Liz and I zipped into the lab, got my blood drawn, and we were happily homeward bound. Even though it was a fairly low-impact trip, with my limited energy stores, I was pretty wiped out. So when I got home, I went straight to bed to try and recoup from my big outing.

About three hours later, my restful sleep was interrupted by the phone. It was my rheumatologist, Dr. Grossman. She never calls, so I know that the news can’t be good–and it wasn’t. My labs were in, and as it turned out, I was severely neutropenic — with an absolute neutrophil count (ANC) below five hundred.

Your neutrophils account for fifty to seventy percent of your white blood cell count (WBC) and among other important tasks, they protect you from bacterial and fungal infection. You could think of them as the first responders of your immune system. Anyway, I was clocking in at four hundred (normal is over 2,500), and Dr. Grossman explained that this was an emergency life-threatening situation and I must get into the ER ASAP. Apparently, people have been known to die within just a few hours from a spontaneous infection caused by severe neutropenia.

Grrrr! I was so angry (and scared) — I’m so burnt out on the hospital. I’ve already been struggling with another recent decline in my health, and now I’m forced to deal with yet another serious health situation. But, it’s clear — I must go in.

So we get packing, which always takes quite some time. By now, Liz and I know that an average hospital stay for me is usually somewhat lengthy, so we go prepared and bring a fair amount of creature comforts to ease the boredom of the sterile hospital environment.

We pull into ER, and thankfully, given my status, I was quickly triaged and put on the fast-track to admission. I was admitted into the hospital and given a room in just six hours, which is record time for an admission into Reagan Medical. It’s not uncommon to wait up to thirty-six hours for a bed. We were really happy to get the same room that I had during my last admission in August. It has a nice view a overlooking UCLA’s oval-shaped Medical Plaza, and with a southern exposure, it has lots of sunshine. And, we were also quite amused to see that the removable wall decals that we had put up during my last stay were still on the wall. Many of the nurses were wondering how they got placed, and they were happy to finally be able to solve the ongoing wall decal mystery.

A neutropenic precaution sign got posted on my door, and all staff and visitors  sported face masks when entering my room. I also was placed on a neutropenic diet — no fresh fruits or vegetables, no tap water, no flowers, etc. Everything was overcooked and dead. Seemingly endless blood cultures were drawn. The medical teams were frantically trying to figure out what was causing my neutropenia. Viral and bacterial infection, and several of my medications were suspect. And malignancy was also of concern. In fact, a bone marrow biopsy was seriously being considered for about a day and a half, and I was absolutely petrified about that prospect. Luckily, they didn’t feel that I really fit the cancer profile, and decided to take a wait-and-see approach before digging a needle into my hip bone. OUCH!

So Liz and I waited, and waited for the lab results.

Day two was very discouraging. My ANC dropped even further. It went down to an extremely critical two hundred. On day three, it didn’t drop, but I was stuck at two hundred. Most of the blood cultures had returned, and luckily they were negative. No infection, but what was causing my neutropenia?

This was looking very, VERY bad. It was clear, I was not going to get through this on my own, and I was at great risk for a deadly infection. Luckily, there’s a drug call Neupogen that stimulates the bone marrow to produce WBCs The doctors told me the my ANC could potentially rise to one thousand overnight. So they opted to give me the injection, and Liz and I just prayed for the best.

The vampire (phlebotomist) came in at around 4:00am the next morning to do the draw, and I was almost trembling with anxiety awaiting the lab results. If I did not respond to the drug, then something was seriously wrong.

At about 10:00am, one of the doctors from the medicine team finally came in to deliver the news. My ANC rose to four hundred. Hmmm, it’s better than nothing, but it was not the response that everyone was hoping for.

The hospital is a dangerous place (for anyone) because of the risk of communicable disease and serious infection. It was the absolute worst place for me, and since I didn’t have an infection or fever, my medicine team decided to discharge me even though I was still severely neutropenic. The three medical teams all had differing hypotheses for what caused my neutropenia. Imuran, Rituxan, and chinese herbs are all  very suspicious culprits, but there was no collective agreement with regards to etiology. As always, I’m always a mystery.

Upon discharge, I was directed to  follow-up with labs to check my ANC the following week, and if I showed any signs of infection (fever, chills, sore throat), I was to come back asap. So we went home, and I was actually able to make my evaluation at the Muscular Dystrophy Association (MDA) Clinic at UC Irvine the next day.

The good news emerging from the MDA Clinic is that my EMG came back fairly normal, and there was no evidence of severe degenerative muscular disorder. Phew! But, we still don’t know what-the-heck  is going on with my overall health situation. I will return to  UCI’s general neurology and rheumatology departments so that they can continue hacking away at my diagnosis.

It was a good day overall, I felt fairly strong — I even indulged in a very unhealthy, yet neutropenic diet compliant Del Taco Burrito — but I was still really nervous about my ANC. Was it rising?

The next morning I woke up feeling a little warm. My home health nurse had come by. She took my temperature, and sure enough. I was running a low-grade fever. “Aw Man!” I also had a bit of a sore throat and was extremely tachycardic. Did I really have to head right back into the hospital? We decided to monitor my fever. It wasn’t that high, and we thought that maybe this spell would pass.

We were wrong. My fever rose to over one hundred, and my tachycardia was worsening. It was clear, I had to go in.

Liz and I have really been burnt out on UCLA as I am currently receiving lackluster care from my primary rheumatologist, and my overall case is mismanaged. We recently consulted with Rheumatologist, Dr. George Lawry, at UCI, and he really impressed both Liz and I. We currently are seriously considering transferring my care to UCI (I’ll reserve this story for another entry).

We paged Dr. Lawry, and his fellow immediately returned our call. As it turned out, Dr. Lawry was currently rounding at the hospital, so we decided to go there.

To quickly wrap up an already long, and relatively boring account, we went to UCI, and they tested me for additional infections. My labs were all negative (YAY!), and the great news is that my body finally exhibited an exuberant response to the Neupogen. We still don’t know what caused the neutropenia, Imuran is the most likely culprit. But,  now I have like four times the WBC count with enough neutrophils to share. Fresh neutrophils anyone?

Amazingly enough, I seemed to have emerged from a severe bout of neutropenia unscathed. But, unfortunately, I still feel like hell, continue to have to deal with a declining health situation, and Liz and I are in the midst of making a possibly life-altering decision about the future management of my health care. UCLA vs UCI? I’ll keep you updated as that story continues to unfold. But, I will make you suffer no more — this unfocused and meandering post is already long enough!


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