I crashed my bike on January 5. You can read about the crash here.

After the crash I didn’t realize anything might be wrong. I continued to ride my bike as I usually do. But, on February 20 I noticed that something was not quite right. I went for a 25-mile bike ride that afternoon and noticed a couple of things that didn’t seem right.  First, as I was starting the ride, I had a hard time clipping in, so I got off the bike to check if anything was wrong. There was nothing, but when I started to get on the bike I almost fell. If I had been clipped in, I would have fallen. I just felt a little clumsy.  Second, on the way back, I felt that it was harder to keep the bike on a straight path–I kept feeling like I was going to run off the road on the right side.  With about 1 mile left, I did run off the road but was able to stop without falling.

Four days later on February 24 I went with Ann for a 2-mile walk in the neighborhood. I felt off-balance, and I tended to shuffle my feet.  My right leg seemed to drag a little. Ann commented on my awkward walking. I also felt unusually lethargic after the walk. That’s the day I realized that something was definitely wrong with me. That night, I fell while getting up out of a chair. It seemed a little hard to get up. I felt clumsy and my movements seemed slow. Another sign that something was wrong.

The next day on February 25, I felt a little shaky on my feet but was not very concerned.  I went to the fitness center and lifted weights without any problems.  That afternoon I decided against going for a ride, because my legs felt odd, and I was a little unsteady on my feet. So, I rode the trainer in the garage for about 1 hour. When I started to get off the bike, I swung my leg over the saddle.  I fell when my foot hit something next to the bike. I don’t think hitting something with my foot would ordinarily cause me to fall.

The next day, February 26, I decided to ride with the retired riders group. I didn’t feel bad but noticed right away that I tended to veer to the right while riding. We rode across the Big Dam Bridge (BDB), and I had no problem going over the bridge, although I rode slowly.  After riding over the bridge and into Burns Park, I realized I could not make the entire ride.

Coreen and Ray were behind me, and Coreen wrote this in an email.

“I was observing you from behind today and you were running to the right. A couple of times, I was afraid you were headed toward the river. I mentioned to Ray that maybe you shouldn’t go up the big hill. That is about when you turned around.”

On the way back to my car, I ran off the trail about 4 time and fell once, though I had pretty much stopped by the time I fell. At the BDB I didn’t find it hard to peddle up the bridge, although I was not going very fast. About ¾ of the way to the top, I fell into the guard rail.  I got off and pushed the bike to the top of BDB. I got back on the bike and rode back to my car without a problem. I noticed when I looked straight down while riding, the bike was leaning to the left quite noticeably.  When I forced myself to position the bike so it was straight, it didn’t feel right. At the car, I had a hard time getting off my bike. I couldn’t seem to get my leg high enough to clear the seat.

When I got home, I sent my PCP a note on MyChart saying that something was wrong with me and that I needed to see a doctor. He said I should come to the clinic as a work-in with someone or go to the emergency department.

I went to the clinic, hoping to talk to my PCP.  After waiting over an hour I was finally able to see the doctor.  He examined me but found nothing obviously wrong.  I asked him to watch me walk, and he also noticed that the movement of my right my was odd.  He arranged for me to have carotid doppler test and an MRI of the brain (scheduled for a month away). He did standard blood tests, which were all normal.

The following 2 days I didn’t do any exercise. By the end of the second day, I decided to go to the ER for a couple of reasons. First, my walk seemed to be worsening, and second I didn’t want to wait a month for the MRI.

It’s not clear to me when I realized that the problems I was having walking and riding my bike were related to the crash I had in January. I don’t think I made the connection at first. But, on the day I rode with the group, Bill, a riding buddy, sent an email to our riding group to say that he was going into the hospital that day to receive treatment for a subdural hematoma. Certainly by then, I figured that my problems were related to the bike wreck. So, when I went to the ER, I had prepared a 2-page summary and timeline of the bike wreck and symptoms I had had.

So, on March 1, I went to the ER at UAMS. We got there about 10:30, and there was nobody in front of us so I went right in. I saw a doctor right away, and he ordered a couple of tests. One was a CT of the head. When the results came back, it was clear to the ER doctor that I had blood on the brain and that I should see someone from neurology.

First Two Holes In My Head

The first person that I saw from neurology (actually from the Neurosurgery Clinic) was a resident who told me I had a subdural hematoma and that I needed to have a procedure to remove the blood. She said there were two possibilities. The least invasive treatment would be to insert tubes in my head to drain the blood. This procedure could be done at the bedside. The other procedure would be done in the operating room, where a hole would be bored in the skull and the blood removed. She said the attending physician would decide the treatment.

The attending physician decided to do the least invasive treatment, which was to put 2 drains in my skull. That procedure would be done at the bedside in the ICU. In the ICU everything was prepared using sterile conditions before the procedure started and cloth was draped over my head and face. During the procedure, I couldn’t see who was in the room or who actually did the procedure. The two doctors I remember being there was a 6th year resident and a first year resident. The person who did most of the talking to me was the first year resident. I’m not sure if she did the procedure but I don’t think the attending physician was there.

After being prepared for the procedure, I had to wait about an hour or more in order to receive an injection of platelets. Since I had been taking a low-dose aspirin, the doctor wanted to minimize the risk of bleeding by giving me platelets. I was also given Fentanyl and Ativan to “take the edge off” and dampen my anxiety during the procedure. The doctor also injected lidocaine in the skin where holes were to be drilled. The procedure didn’t hurt, and I could hardly tell that I was sedated. I heard the drilling, which was loud as promised.

The doctor drilled a hole on either side of my head near the front and screwed in metal drain ports.

The doctor attached rubber tubes that extended a couple of feet from my head. The tube terminated in an oval-shaped reservoir to collect the blood that drained out.

I wasn’t very worried about the procedure. It’s not rocket science I told myself; it’s drilling. How hard can it be to drill holes in the skull.

WTF! No, it’s not rocket science, it’s brain surgery! If you give me a couple of minutes, I’m sure I can come up with 5 or 6 things that could go wrong. But, by the time the drilling started the Fentynal and Ativan had kicked in, and I was pretty relaxed and mellow. I hoped that the resident had taken a shop class in high school and that she made an A in DRILLING.

I stayed in the ICU for 4 days. I had to lie flat in the bed so the blood could drain out. I was allowed to sit up a little for short periods to eat. As far as I know the only drugs I was given while in the hospital (other than what I usually take at home) was Keppra (an anti-seizure medicine) and Dexamethasone, a steroid. On the fourth day I was started on an antibiotic, because my white blood count was a little low, though in the normal range.

While in the ICU, I got lots of attention from the nurses. They came in my room periodically throughout the day and night to evaluate me by shining a light in my eyes, having me squeeze their finger, move my arms and legs against resistance, and asking me questions. Each day in the ICU I got a CT scan at about 4:00 am. A resident from the neurosurgery group rounded each morning at about 5:30. A doctor from the ICU also came by each day to see how I was doing.

Bedpans and Urinals

It eventually came the time that I needed to use the commode and there was one in my room. So, I asked the nurse if he would help me to the commode. He fetched a bedpan and placed it on the bed and said, no, you must use the bedpan. Seeing the bedpan instantly caused me anxiety, and I started to whine to the nurse. Do you see the size of my ass and the size of that bedpan? There’s no way I will be able to get up on it. Also, not only is it barely wide enough, it appears not be deep enough. I’m about halfway weak with the holes in my head and I’m connected to all these wires. Even if I could get up on it, I don’t believe I can balance myself on it. The nurse said, first, you are not going to get-up-on-it. (Oh, no!) Second, you will have to use the bedpan while lying mostly horizontal in the bed, according to the doctor’s orders. (Really!) When you are ready, let me know and I will help you. Without going into details, it worked out pretty well. It wasn’t his first bedpan rodeo so we made it fine. However, I hope I never have to use a bedpan again!

On the other hand, a urinal for a man is a fine apparatus. Light weight and easy to use without assistance; it can be used without sitting up; and it takes no specialized training to use it. There was always one within arm’s reach on my bed. I even took one home with me when I left the hospital. I put it on the night stand next to my bed. It was reassuring to know, if I woke up at night and needed to pee, I had the option of using the urinal or walking to the bathroom and risk falling. I used it a few times to be sure.

On the last day I was in the ICU, a resident removed the drains from my head. He said he could give me some lidocaine before stitching me up, but he said I probably wouldn’t need it. He was so cavalier about the situation, that I said no, I won’t need any lidocaine. That was a mistake. It wasn’t very painful when he unscrewed the metal drains, but it hurt like hell when he wiped around the drains and when he stitched up the hole.

I was evaluated by an occupational therapist and a physical therapist before I left the ICU. The occupational therapist concluded that I wouldn’t need any assistance after leaving the hospital. The physical therapist thought I had good strength but noted that I was wobbly when I walked.

After the 4th day I left the ICU and spent one night in a regular room for observation. I didn’t get as much attention in the new room as in the ICU, but at least I was able to take a shower.

After five days in the hospital, I went home. I filled prescription for Dexamethasone (a steroid) and Keppra (anti-seizure). The steroid ensured that I wouldn’t sleep very well; I didn’t have a good night’s sleep for a long time.

A couple days after I got home, I called the neurosurgery clinic and asked if I could go for a walk. The answer was yes, but I should go slowly. So, we started to walk several days a week. I was lightheaded and walked pretty slowly and got tired easily. After being home about a week, I started to see improvement. The loss of dexterity in my right hand had improved and I felt stronger when walking and my right leg seemed more or less normal.

About 20 days (March 25) after leaving the hospital I had an appointment for a CT scan. The Sunday before the CT scan on Monday, I had a terrible headache and I noticed that I had neurological symptoms in my left hand—loss of dexterity. After having the CT scan, I went to the ER and explained that I was having problems with loss of dexterity in my hand. I also got an MRI. I was told the CT scan was normal (no change from the last one) and the MRI was also clear (no changes from the last one a few years ago). However, the doctors decided I should spend the night in the hospital for observation. I was moved to an observation ward where several residents from the Neurology Clinic came by and examined me.

I was released from the hospital after one night and got home about 3:00 the next afternoon. About dinner time I received a call from someone from the Neurology Clinic (I didn’t catch her name) who said a final reading of the MRI showed some abnormalities and that I should come to the ER! I told her I had just spent the previous night in the ER and surely this problem could be dealt with the next day. However, after a second thought and a call to my son, the doctor, I took his advice and went to the ER that night.

Big Hole In My Head

The ER was full, and we had to wait a long time. Since I couldn’t remember the name of the doctor that called me, it took some time to track her down. I saw the ER doctor but he said I should see someone from “neuro”. When that doctor from “neuro” came he said it would probably better if someone from Neurosurgery came to assess my case, and he promised to go find someone. Before long a doctor that I recognized from the Neurosurgery Clinic came by.  Within several minutes he decided I would need additional surgery.  He said there was a little change for the worse that showed up on the CT scan. With several back and forth visits with the attending physician, they decided I should have burr surgery. (Basically a couple of holes bored in the head to flush out the blood.)  With that decision we were discharged from the ER. We got home a little before midnight Tuesday night with instructions to wait for a call to schedule the surgery.

The surgery was scheduled for Friday. So, nothing much happened Wednesday and Thursday. My symptoms in my right hand worsened. I seemed more lethargic and slower in my movements. I had unusual headaches. The headaches were in the right frontal lobe and seem to pulsate from time to time, but they were not very severe. 

I had to be at the hospital at 5 am on Friday. I bathed using antibacterial soap as instructed. My niece, Sara, the nurse, came to take us. We got there on time, and Sara knew where and how to check in.

It was frustrating from that point on, because we had to wait quite a while before going back to the pre-op area. We spent some time in the pre-op area getting ready for surgery–gown, IV, etc.  I was in the OR for several minutes while they prepared things. The last thing I remember was a nurse saying she was going to put a mask over my face. 

I don’t remember much about waking up or the early parts of recovery. I don’t remember being in any pain, although I did have a headache off and on for the rest of the day. I took pain medicine (Dilaudid, Tylenol and Morphine, I think) in the morning after surgery.  Also, in the evening just before bed I had a dose of Oxycodone.

After several hours in post-op, I was moved to a room.  I had a typical night on steroids—no sleep. I rested okay, but I don’t think I slept any at all, until early in the morning.

One of the Chief residents and three other residents rounded about 8:30 the next morning (Saturday).  I asked them a lot of questions.  Later in the morning, Dr. Rodriguez, the attending surgeon, came by and spent a long time with us.  I’m pretty sure she did the surgery. She said they first drilled 2 holes, but because the blood was a very thick clotted mass, they couldn’t extract the blood.  So, they cut a larger hole.  I said with a jigsaw?  She said it was very similar–a lot of our tools are like ones in your garage.  She described the saw as having a “foot” on the bottom that went below the skull that acted as a guide to avoid going to deep. After making a larger hole they were able to clean out all the accumulated blood. 

While I was still in the recovery room, Dr. Rodrequez showed Ann a picture of the hole in my head she had taken during the surgery.  Ann described the hole as a round silver dollar-sized hole.  I asked the doctor how the hole was covered.  She said they inserted the skull pieces back in place and secured them with tiny titanium screws. It won’t set off alarms at the airport.  The surgery was on the left side (left side controls the right side movements).  The doctor said the blood that is still left on the right side will probably slowly reabsorb.  She also said the “abnormal” area on the MRI was the original hematoma.

After spending only one night in the hospital, I was discharged with the same instructions as before—no driving, no lifting more than 10 pounds, no bending over from the waist, no pushing, pulling or straining until after I the post-op visit with the neurosurgeon. We got home on Saturday a little before noon. I went home with a dressing over the wound, and I was told to not remove it until the second day, at which time I could gently wash the incision with baby shampoo.

About a week after surgery, I went to see a nurse at the Neurosurgery Clinic, who examined the incision and removed the stitches. I told her that I had been sleeping during the daytime much more than usual. She encouraged me to rest and sleep whenever possible because that would facilitate recovery.

Almost immediately after the surgery, I could tell the dexterity in my hands was much improved. Dr. Rodriguez said it might take a week to for my hands to feel completely normal.

For most of the month after surgery, I still felt weak, I tired easily and I was lightheaded. However, I didn’t have much neurological problems like loss of dexterity in my hands or trouble walking. I had trouble sleeping (I was still taking steroids) and woke up often with a headache. I was prescribed several 5 mg tablets of Oxycodone, and I took several of them or Tylenol at night so I could sleep.

During the first couple of weeks in April I didn’t feel like exercising. But, I gradually started to feel stronger and started walking more often. During the first 2 weeks in May I rode the trainer (stationary bike) in the garage or walked almost every day.

On May 15, I had a CT scan and met with the neurosurgeon. About a week before that I started to feel almost “normal”. The doctor showed me the CT scans before surgery, right after surgery, and the current scan. The before surgery scan showed a lot of blood between the brain and scalp. The scan right after surgery showed a small pocket of blood on the left side, and the last scan showed no blood at all.

Dr. Rodriguez said I could resume normal activities but encouraged me to go slowly. So, the next day I went to the fitness center and rode the stationary bike and lifted weights. The next day I went for a 16-mile bicycle ride! I felt pretty good while riding, though I could tell I was slightly out of shape. I rode 100 miles the week after I saw Dr. Rodriguez.

It was a good day for a ride on January 5th—clear but a little chilly (mid-forties when we left). Several of us old timers met near the Clinton Presidential Museum at 9:00 for a ride of about 30 miles. We biked through downtown Little Rock, south toward College Station and Sweethome. I made it only about 4.25 miles before I crashed.

From left to Right: Coreen, Mike, Janice, Scott, me, Carl; our ride leader, Jim, took the picture

One question, actually the biggest question, is what caused me to fall. One possible cause was syncope, which is a temporary loss of consciousness from insufficient blood flow to the brain–fainting. The doctor in the ER mentioned this as a possibility, and I saw the word several times on my medical chart. From my health record at UAMS the doctor knew I had had an episode of supraventricular tachycardia (SVT), which is a very fast heart rhythm. Syncope can be caused by SVT.  However, I don’t think that SVT could have caused me to pass out, because I believe I would have felt it coming on.

Blue line at the bottom is speed

I ride with at Garmin 820 Edge bike computer. I have a chest strap that syncs with the Garmin to record my heart rate. The Garmin collects heart rate data, GPS and other data.  The data automatically syncs with a Garmin website where I can review the uploaded data. From this data I can gain insight into what happened at the moment of the crash.

I’m pretty sure I would have recognized a symptom of SVT (weakness, when I had it before). I usually keep my Garmin set on a screen that shows heart rate, distance, speed, average speed, cadence, and grade.  If I had felt anything unusual, I would have looked at my heart rate monitor to see what my heart rate was. The Garmin data supports my theory. My heart rate at the time of the crash was 111 bpm, and there was no indication that my heart rate got anywhere near the SVT range (176 bpm during my previous episode). Several minutes before I crashed my heart rate was 150. That’s pretty high for me, but not unusual. And it came down quickly when we stopped for a bit to wait for some riders behind us.  It is interesting to examine the graph of my speed at the time of the crash.  The data show that the speed drops precipitously to about 3 mph, and that it took another 40 seconds to reach zero.  I assume that after I crashed the rear wheel continue to spin, which would explain why the Garmin recorded speed even after I had apparently crashed.  I was traveling about 20 mph at the time of the crash; we had just gone down a pretty steep hill, which would account for our fast speed, although the spot of the crash was rather flat.  Hitting the ground at that speed could hurt a fellow.

The only other way to evaluate what could have caused the fall is from eyewitness reports. Jim and Scott were ahead of us and didn’t see the crash. I was just ahead of Janice, so she saw what happened. She texted me her account:

You might want to also tell the doctor that when I got to you (immediately ) you were on your back and you were unconscious. Your eyes were partially open, but not awake. Your breathing was shallow and irregular and sounded raspy, noisy, (like low pitched snorting or snoring) and did not not sound normal. Also you were foaming at the mouth, drooling a little.  Coreen probably has a record of how long she was on the phone with 911 which might give you a better estimate of how long before you recovered and gained consciousness.

In a second text, she added more insight:

In talking, the group is concerned that maybe you fell off the bike because you passed out.  I was so close that I didn’t have time to really see. There was a dip in the road, but it looked like all of a sudden you fell off the bike.  Coreen and Mike were behind me and they had a different perspective.  But you were unconscious several minutes.  It seemed like a long time.

When I talked to Mike and Coreen, who were a bit behind me but saw the crash, they thought that I just fell over for no obvious reason–syncope.

Carl was the other eyewitness. He was just behind Janice. He visited me in the ER, and we talked about what he saw. He also described a dip in the road associated with a pothole that could have been hard to see. 

Dip in the Road/Pothole (Click on the picture to see a larger view)

I went back to the place where I crashed to look for the dip in the road.  I was able to locate the crash site pretty precisely using the Garmin GPS data and pictures that Jim took at the site.  I believe I found the “dip in the road” that Janice and Carl described.  It’s not a huge pothole, but certainly big enough to cause a wreck if I hit it unexpectedly.   We will never know for sure. I hope the pothole was the cause; I would hate to think I could pass out for no obvious reason. What about while driving a car?

I have no recollection of anything before or after the crash. I remember being in the ambulance. Apparently, I sat on the tailgate of a pickup truck while waiting on the ambulance, but I don’t remember that. In the ambulance the EMT asked me who the President was. My answer was Obama, either because I was really confused or I was wishfully thinking of times past. In a few minutes I realized that I had given the wrong answer and told the EMT; I’m sure he didn’t change his assessment about my confusion.

To have had such a concussion-producing crash, I wasn’t in much pain. I had a small abrasion near my right elbow, which hardly bled. My right shoulder was sore for a time, but not that much. I had a sore place on my right rib cage that I didn’t even notice at first. After a few days my rib cage started to hurt–it hurt to take a deep breath or to move very much or exercise the muscles like doing a sit-up.  But, that pain only lasted one or two days.

I was taken to UAMS ER where I was given the following tests:

  • ECG 12-Lead—Normal
  • Basic Metabolic Panel blood test—All tests results were in normal except my glucose was a little high
  • CBC without Differential—All tests results were in normal range
  • CT Head WO Contrast—Basically normal. No intracranial hemorrhage or drainable fluid collection is seen.
  • X-ray of my shoulder was normal
  • X-ray of my chest was normal
  • 3 time-sequence tests of troponin—These tests show whether I had had a heart attack. I had not.

I was taken to the Clinical Decision Unit, another area in the ER where you go for observation, and I thought I might stay there all night. But, when the third and final result for troponin was normal, they let me come home with instructions to followup with my PCP and to have a nuclear stress test. The stress test conducted 2 days after leaving the ER was normal.

When I saw my PCP 5 days after the crash, he decided that I should wear a heart monitor for a month. I did that, and what a pain in the ass that was. The monitor consists of 4 electrode leads stuck to my chest connected to a battery pack and control module. I wore it 24/7. I only took it off to shower. Of course, sleep was frequently interrupted when I would roll over on the control module or pull off an electrode, causing the thing to beep.  The results didn’t show any problems:  No arrhythmias were detected in this 30-day event monitor.

Few small tears on Jacket

 

 

There was very little damage to my clothing. My outer jacket was torn in a couple of places. There were no scuffs on my gloves. (Click on the image to see a larger version).

 

 

 

 

 

 

 

 

My helmet was also broken. I noticed a small crack and an indentation in the helmet on the back of the right side.

 

 

 

Later, I noticed the foam padding inside the helmet was cracked. Even before I noticed the crack, I bought another helmet, because I had heard that if you ever crash with your helmet you should buy another whether you see damage or not. I believe I have a good helmet, which is equipped with MIPS (Multi-directional Impact Protection System) Brain Protection System.

 

 

 

My bike was not seriously damaged, thank goodness, because it’s a new beautiful bike. It’s an Allied Alpha with just about everything made of carbon and is light as a feather. I took it Meteor Bike Shop to have it checked for damage. The right brake lever was twisted but not broken. There was a scratch on the seat and on the brake handle but nothing major.  The mechanic said I must have sacrificed my body for the bike, because there was so little damage.

 

After the crash, I didn’t ride for a few days. One reason was that I had a migraine headache that I don’t think was related to the accident. I have a history of having migraines, and this one seemed to be a normal one for me. For the next month, I kept a normal winter riding schedule. I rode the trainer in the garage or the stationary bike at the fitness center when the weather was bad.  I rode outside if the weather was good. I missed several days when we were in Hawaii and a few days when I had a cold.

I noticed no decrease in my performance, and I felt fine until February 20.  That’s when the shit hit the fan.

Story to be continued.  You can read the rest of the story here.

30. August 2014 · 1 comment · Categories: Health

I had another Igg infusion treatment yesterday, which was my fourth. When I started these treatments, the doctor and I agree that I would have 6 treatments, one each month, to see if they made me fell better.

I felt bad yesterday when I went to get the infusion. As usual, the infusion took over 3 hours; I didn’t notice any big change in the way I felt during the first couple of hours of the infusion, because I was already feeling bad. But, I felt progressively worse toward the end of the infusion, and by the time I was finished, I felt really bad. I had fever all afternoon and stayed in bed.

I have an appointment to see the doctor next week; I suppose he will evaluate how the treatments are going and whether to continue for two more treatments. Unfortunately, I’m not very confident that the treatments are helping very much. For sure, the treatments did not provide a “cure”. I have good days and bad days. After the treatments started I thought I could see some benefit. However, I expected there to be some placebo effect. When the primary symptoms are malaise, burning eyes, mild headache, tiredness, and generally “don’t feel good”, it’s hard to evaluate improvement from day to day. I still have good days and bad days, but for a time I thought there might be fewer really bad days.

However, this month there were some days when I didn’t feel like doing anything. Yet, I had some pretty good days this month and had some good bike rides, which for me is a good gauge of how I feel. But, Wednesday and Thursday of this week I didn’t feel like riding or doing much of anything. The past few days have been particularly bad.

 

On Friday I had my first infusion of immunoglobulins. I was told to show up at the Infusion Center at the Med Center outpatient area at 8:30, and I was there on time. I don’t know what I expected the Infusion Center to be, but it turned out to be part of the Cancer Institute, the place cancer patients go for chemotherapy. Ugh. I checked in and had a seat in the large waiting area. Although there were more than 50 empty seats, the two sickest men there came over and sat next to me. One had a mask and the other one coughed. Ugh. Before long my sister came and I moved to sit with her. She was there for a chemotherapy treatment for ovarian cancer.

At about 9:30, I was called to go back to the infusion area. I was hooked to an IV, and given two Tylenol pills for the headache I was promised. The nurse first drew blood, and then he started the infusion drip. The Doctor’s order was for the infusion to take three hours, and it did. The Doctor came by to check on me about midway through the treatment.

IMG_20140606_104708_508The bad headache and flu-like symptoms started for real about half-way through the process. The headache lasted for the next several hours but by the next morning, I was back to “normal”. I believe I feel a little better today but am not “cured” yet. It could be a plecebo effect. I didn’t expect to see immediate results.

After not feeling very good for over a year, and seeing the Doctor umpteen times, I have been diagnosed with Common Variable Immonudeficiency (CVID). I will start a treatment tomorrow.

I haven’t been acutely ill, but sick enough that my daily activities were affected. From time to time I feel like I’m coming down with a bad cold or the flu, but I never do. A little bit achy, eyes and nose burn a little, a little light-headed, more tired than usual, some headaches, tingly skin. Sometimes I would feel bad for several days in a row, during which times I didn’t feel like doing anything. Recently, the bad days are becoming more frequent.

In March of last year I crashed my bike after becoming a little dizzy. That caused me to have a bunch of tests, mostly related to my heart. I had a stress test and wore a heart monitor on two occasions, once for a month . All the heart-related tests were normal.

But, when I continued not to feel good, I kept going to the Doctor. I’ve had just about all the bloods tests the Doctor can think of. Nothing seemed to be abnormal. My Doctor once commented that based on my bloods tests, I’m one of the healthiest people he knows.

I also saw a neurologist, because when I’m feeling bad, my skin tingles all over (you know that’s not normal). I thought I might have neuropathy. But, the neurologist said no. However, she offered no explanation for my tingly skin.

When my regular Doctor couldn’t find anything, I went to the Allergy/Immunology Clinic in February to be checked for allergies. No allergies. The Doctor at that clinic ran some blood tests to check my immune system. One of these tests showed that I had low immunoglobulins/antibodies. That result prompted additional, more-detailed tests of immunoglobulins. I was tested for several antibodies, then given pneumonia, diphtheria, pertussis, and tetanus vaccinations. After a month, I was retested for the antibodies, which normally will increase after vaccination by up to 4 fold. Mine didn’t increase much at all.

These test results are consistent with or are diagnostic for CVID. The usual symptoms for this conditions are frequent infections, such as pneumonia or bronchitis. I haven’t had any infections (thank goodness); I didn’t even have a cold this year. But, a small percentage of people don’t show those symptoms. Perhaps, I’m among the few who don’t exhibit common symptoms (always an outlier). The treatment for this condition is twofold–low level doses of antibiotic and/or infusions with immunoglobulins.

At first, I opted for just taking the antibiotic, because I didn’t like the sound of receiving “blood” infusions. I started the antibiotic treatment about the end of March by taking 500 mg of Azrithromycin once a week. The Doctor said if I started to feel really bad, I should call and he would prescribe a Z-pack (Azithromycin for 5 days). About a month ago, I started to feel bad, and I took a Z-pack. I didn’t start to feel better, so I took a second Z-pack. When I still didn’t see any improvement, I called the Doctor.

I saw the Doctor last week, and we decided that I should start getting infusions of immunoglobulins. I stopped taking the antibiotic, since apparently that did no good. I will have the infusions for six months to see if I start to feel better. The Doctor’s staff checked with the insurance company (Medicare) to get prior approval for the treatments. I imagine the treatments are pretty expensive. They received approval for the treatment this week, and I will have my first treatment tomorrow. I will go to the hospital and receive the infusions once a month. It takes about 3 hours to receive a dose.

Of course, I am a little apprehensive about receiving an infusion of someone else’s body fluids. But, the Doctor assured me there is very little risk involved with the treatment. He said the blood that the immunoglobulins are extracted from “do not come from the Red Cross”. The infusion preparation is developed by a drug company. It is prepared from blood of over a thousand individuals from all parts of the country to ensure that a wide range of antibodies will be present.

I’m encouraged about receiving the infusion treatments, and I’m hopeful that I’ll start to feel better soon.

I finally heard from the Doctor about the results of wearing a heart monitor for a month.  The nurse from the Family Clinic called and read me the report.  It said that I had some tachycardia (heart too fast) and some bradycardia (heart too slow) but these arrhythmias were not very significant and were not the cause of my dizziness.   So, that’s that.  I was hoping for a definitive answer, and I believe I got one.  My light headedness and other symptoms are not related to my heart.  That’s a good thing.  I would still like to find out what is the causing me to feel bad, so I will make an appointment with the Doctor and see what he can do.

19. June 2013 · 4 comments · Categories: Bob, Health

After feeling a little dizzy while riding my bike back in the middle of March, I’ve been to see the my Doctor a couple of times. I had some blood tests, which were all normal. I had a treadmill test, which was normal. I also wore a heart monitor for 24 hours, and that showed I had a few arrhythmias. That test lead to another test that required me to wear a heart monitor for a month. I finished with that test almost 2 weeks ago. Naturally, I became anxious to hear about the results.

Several days ago, I called the cardiac lab to see if I could get information about the test results. I left several messages, but never spoke to a person. Then, I started calling my Doctor’s office. After several tries, I finally spoke to a nurse who investigated the problem. She found out that the cardiac lab here at UAMS does not evaluate the results of the heart monitor test. That is done by a company somewhere, God only knows where, and that is probably why it is taking so long to get the results.

Although I have no experience with these kinds of heart tests, I’m amazed that there are no cardiologists at UAMS that can evaluate the results. I can only assume that I must not have anything very serious or I would have heard something by now. They wouldn’t let me die would they, while they take their sweet time evaluating the test results?

One of the largest bike rides in central Arkansas, the Tour de Rock, kicked off at 7:00 am this morning. For the first time in several years, I didn’t ride!

I had planned to ride; I got up at 5:30 this morning and assembled my gear–water bottles, electrolyte pills, helmet, gloves, etc. By 6:15 I had loaded my bike and was on my way. After driving a couple of miles, I turned around and came home and pouted.

Two things influenced my decision not to ride. First, the weather forecast called for thunderstorms and heavy rain. The greatest probability for storms was for the afternoon, and I thought the rain might hold off until after the ride. But, it started to rain about 10 minutes after I left home. Second, I was dizzy this morning. This is the third day in a row that I’ve felt dizzy. So, the thought of riding nearly 70 miles in a pouring rain on slick roads while feeling dizzy, was enough to cause me to stay home.

It was a wise decision. It poured rain all morning—over 2 inches in 3 hours. I can’t imagine that riding a bike in a downpour could be the least bit fun. Because of so much rain, the 100-mile ride was suspended after 2 hours, and some rides were canceled.

My dizziness is no doubt related to a previous spell of dizziness that caused me to crash my bike into a rock wall. In order to figure out what might be causing the problem, I’ve been wearing a heart monitor for the past 3 weeks and will wear it another week. I’ve been instructed to press a button on the monitor anytime I feel any symptoms, like dizziness. I’ve been pressing the button quite a lot over the past couple of days. I am hopeful the monitor will provide sufficient data so a doctor can diagnose my problem.

Several days ago while at a school reunion, I noticed my right ear started to feel strange. It felt like I had an earplug or water in my ear; the sound was muffled. While riding in the car on the way home, it got worse from more loud talking. The noise started to make my ear hurt. I’ve had this feeling before after hearing a very loud noise, but the feeling usually went away rather quickly, at least by the next day or two.

But, my hearing didn’t improve over the next couple of days. I also had a louder than usual buzzing in my ear. My ear was very sensitive to “sharp” noises. A clink of a nearby glass, for example, would make me cringe. Since the muffled sound didn’t go away in a couple of days, I checked with Dr. Matthew. He said if the problem didn’t completely go away in a few days, I should see an ENT specialist because I might be having sudden sensorineural hearing loss. He said the treatment for this problem is to take Prednisone, a steroid, to prevent permanent hearing loss.

The problem got better but didn’t go away, so I made an appointment with an ENT physician. I also started taking Prednisone on my own. Ann had an unused prescription, which the Dr. gave her for a foot problem.

I saw Dr. May today, but before I saw the Dr., I saw an audiologist. She performed a hearing test and found that I have near normal hearing at low frequencies, but some loss of hearing at higher frequencies. She said the hearing loss was not enough for me to be a candidate for hearing aids; I believe my loss of hearing of high frequency sounds is probably common for a person my age. She also told me that the hearing loss was symmetrical meaning it’s about the same in both ears, although slightly worse in the in my right ear (the problem ear) at one or two frequencies. I took this to be good news, because the problem I’m experiencing with my right ear is apparently not associated with hearing loss in that ear, otherwise it would have been a lot worse than my other ear.

The Dr. didn’t find anything that could be causing the problem—no wax buildup, no inflammation, no fluid, etc. However, he prescribed Prednisone, saying it wouldn’t hurt to take a round of that. So, I will be taking this stuff for about a week. I go back to see him in about 2 weeks.

I told both the audiologist and the Dr. that Matthew was a head and neck surgeon. I must have told the audiologist that he works in Richmond. After the Dr. finished his examination and I was ready to leave, he said “I know your son, Matt”. He didn’t ask me if I had a son that did his residency in Richmond or any other question. He must have thought, “How many ENT surgeons named Bridges could there be in Richmond.” He said Matthew was Chief Resident when he started his residency program at MCV in Richmond. He knew where Matthew works and other stuff like that.

Small world isn’t it.

12. May 2013 · 2 comments · Categories: Bob, Health

heart monitor

Here I am, all wired up

A few weeks ago, I got a little dizzy while riding my bike up a hill, causing me to run into a rock wall and skin my leg. Since then I’ve seen the Dr. a couple of times, had some blood tests, wore a heart monitor for a day, and had a treadmill test. During the treadmill test, the Dr. said everything looked good, but I don’t have the final results from that yet.

The results from wearing the heart monitor for a day showed that I has a couple of briefs episodes of “ectopic atrial rhythm”. I believe that means that my heart had some extra beats it shouldn’t have had. After reviewing those results, the Dr. decided I should wear a heart monitor for a month!

I went to the hospital and had the monitor “installed” a couple of days ago. The monitor box is a bit heavier and bulkier than my cell phone. It seems to always be in the way.  I’ve pulled the wires out a couple of times already. It is not my favorite thing to sleep with, that’s for sure. I can take it off to shower, thank goodness. I was given plenty of extra electrodes so I can replace them each time I take a bath.

The monitor has a button to push if I feel any symptoms. That causes the monitor to record for several seconds.  Otherwise, the monitor detects irregular heart beats and sends a wireless signal to record the data. I pushed the button this morning because I felt a little light-headed. About 30 minutes later, a person from the company that supplies the monitor called to ask what I was feeling and what was I doing when I pushed the button. I asked if she could see any irregular heart beats, but she said she didn’t know anything about that. She said the Dr. would be the one to discuss the results.

I wore the monitor yesterday while on a 53-mile bike ride. I worried the electrodes might come off when I got sweaty, but they didn’t. It was pretty cool yesterday, and I didn’t sweat much.

I’m glad I can ride while wearing the monitor. Otherwise, I would just take it off to ride, but I really didn’t want to do that. But, I don’t want to stop riding for a month just for this test.