My First Treatment

Finally, on August 13, I got my first treatment. The main hangup was the insurance company wanted to do a full review of my file to make sure all I's were crossed and T's were dotted. I had received all the intro/educational material from CSL Behring and reviewed it all, so we knew as much was possible to know going in to it.

So on Thursday afternoon we drove off to El Paso.

The Vivaglobin is distributed through specialty pharmacies which conduct initial training, handle your refills and resupplies every four weeks, and are there to call if you have any questions and problems. The first infusion is done at their offices to train you and to monitor for any adverse reaction, and all went well. There was an initial shock of surprise due to a somewhat misleading scene in the DVD that I was sent. In that scene, a studly-looking buff dude loads one syringe with Vivaglobin and inserts one needle into his abdomen.

I was set up with a set of four needles.

It turns out that each infusion site (needle placement) can only hold 15-20 ml of fluid. My treatment requires 60 ml of fluid (my starting dose). Thus four injection sites. It was just a bit of a shock expecting one needle and being able to rotate placement and then being presented with four. I'm not needle-phobic, but you really get tired of this and I've only been doing it for four months.


Here's the procedural run-down:

1. Wash your hands!
2. Prepare a semi-sterile area (lay down a couple of sheets of paper towels).
3. Once the Vivaglobin bottles have warmed to room temperature, pop the tops and wipe them with alcohol wipes.
4. Inspect the bottles to make sure there are no contaminants or discolorations.
5. Mount a needle to the syringe. This needle is used only for drawing the VG into the syringe.
6. Draw 60 ml of air in to the syringe plus a little bit more.
7. Insert the needle into one of the bottles then inject air. The increased air pressure forces the VG into the syringe. Repeat until the bottle is empty, then repeat on all bottles until the syringe is fully loaded. The bottles are not disposed of yet: you have to pull little lot number stickers off them to put in your treatment journal.
8. Put the safety cap back on the needle, remove the needle from the syringe and put it in your sharps disposal container.
9. The pump that I use is called a Freedom 60. It will hold a 60 ml syringe, no larger. It's a mechanical pump driven by a wind-up clockwork; the speed of the infusion is set by a regulator piece. You now mount the regulator to the syringe.
10. Connect the infusion tubing set to the regulator. For a four-lead set, the line from the regulator goes in to a splitter. Two lines come out of the splitter, hence the name, those lines go in to splitters, so one becomes four. These four lines terminate in the needles that you insert in to your body. In my case, I'm using my abdomen.
11. Now you get to purge air out of the lines! The syringe probably has bubbles in it. I find the best technique is to hold the syringe top-up and press the plunger. It's not always easy to see the progress of the liquid through the lines, by having the bubbles go first, you can more easily see where the liquid is in the lines. You want to stop pressing when it is an inch or two from the needles.
12. The ends of the lines need a little bit of prep work. First, the needles themselves have tubes on them to protect the tip. It's to protect people from getting stuck by the needle, but also to protect the sharpness of the tip: the needles are designed for one insertion, then they get a little duller. If you have to relocate a needle after it's been inserted, it's not quite as sharp and is a little harder to do. The 9mm set has little wings and a plastic piece must be removed. While the piece is in place, it also helps to defend the needle.
13. Now comes the fun part. Take an alcohol wipe, clean a patch of skin, pinch an inch, and in goes the needle. This is where a second person helping you comes in handy as you need to apply either tape or a Tegraderm patch to hold the needle in. Repeat for as many needles as your setup involves.
14. Mount the syringe in the pump and turn it on: you're pretty much done. Write down the start time for your infusion journal, throw away all of the detritus, and find somewhere comfortable to sit and wait while the pump does its thing.

The video that I received from CSL shows people doing all sorts of things while they're infusing, and they even have this spiffy little shoulder-bag for them to carry their pump around. Well, as far as I'm concerned, forget it. Maybe some people can do one needle and maybe do lots of cool things while infusing, I don't think it's practical. Maybe it's just me as I always have four needles in me, I don't know.

For me, I sit down and either work on my laptop or watch TV. The chair that I use is really a bit too cushy, when I get up from it I hook my foot under our coffee table and use it for leverage. I'll go to the kitchen or the bathroom, but I'm not going to go driving: the thought of having a car accident while I have four needles in my abdomen doesn't bear thinking about.

Besides, the time requirement isn't that bad. It takes about 2 ½ hours to do an infusion, including setup and cleanup, not including the VG warming. The VG must be refrigerated until use and needs a couple of hours to come to room temperature. You don't want to force the bottles to room temperature, just let them sit. I get them out when I get up and start breakfast, by the time I've had breakfast and showered they're generally up to temperature.


It's sometimes difficult to tell exactly when your infusion is done, at least with my pump. It's very quiet running, so you need to keep an eye on the syringe. The problem is that the rubber of the plunger doesn't fit the bottom of the syringe perfectly, so it's hard to see. I'm sure I've left the needles in longer than I needed to on more than one occasion, but that's the way it is.


Disconnecting is also a bit of a procedure, and is also easier if you have someone to help you.

1. Turn off the pump, remove the syringe from it.
2. You first have to remove the Tegraderms or tape, which can be painful if you're as heavily forested as I. There's a trick to Tegraderms: lift up around where the tubing goes under the patch and pinch a bit. With your off-hand hold down on the needle piece, then pull and stretch the plastic. You're going to lose some hair, but it pulls it away from your hair in such a way that it doesn't hurt as much. Work your way around the bandage and then lift straight up. Remove the plastic of the Tegraderm and throw it away.
3. Use a pair of scissors and cut the tube just behind the plastic bit that holds the needle, put the needle in the sharps container.
4. The second person is to hold the scissors while you hold the line taut. They also get to stand by with an alcohol wipe in case you have any leaking of the VG or any blood. It's not uncommon to get a bit of blood, but it cleans off easily enough.
5. Once all the needles have been removed and properly disposed of, throw away the tubing and syringe; it can all go in the garbage. The sharps container is used until it's full, then your pharmacy will send you a new one. It comes in a shipping carton to return to the vendor for proper disposal since it's classed as biohazard medical waste.

And you're done. Until the next one. You can do all this solo, which I occasionally do, but it's a lot easier with a second person.


My pharmacy sends me a four week supply of Vivaglobin and the consumable supplies: syringes, needles, tubing sets. Occasionally boxes of alcohol wipes, or additional Tegraderms. Annually I will be sent a new pump and send them my old one for cleaning/refurb/recalibration. The four week cycle makes it easy for my immunologist to make alterations and see if we need to tweak anything. The insurance company approved treatment for six months, which is basically a review cycle. The condition, unless they find some genetic treatment at some point, is pretty much for the rest of my life, so it will be approved in the future. They're monitoring progress and making sure proper testing is being done, or at least that's my assumption.

Finally some good news from my immunologist!

Saw my immunologist Tuesday. I heard from him 5 weeks ago (I normally only see him every 3 months) and at that time he increased my treatment dose from 60 ml to 70 ml. This was actually a good thing as the most recent blood work showed improvement in my IgG levels, but I didn't have hardcopy to see what the actual improvement was. I'm guessing that if I hadn't shown improvement, they wouldn't have wanted to waste the additional Vivaglobin if I wasn't responding to it.

Today I got hardcopy.

On August 12, my IgG level was 164, the normal range is 694-1618 (mg/dL). This was after diagnosis but before treatment, which began 8/13. (There are two other immune globins, IgA and IgM, but apparently they're not really important.)

On September 23, it was 613.

And on October 13 it was 638. An increase of almost 4x.

So still a little low, but GREAT improvement.

He said I can go back to school in the spring, I just need to be careful if there's a flu outbreak or something. Since most of the seasonal flu season is over, I've done pretty well. I've been immunized against pneumonia and seasonal flu, and after Thanksgiving I'll be getting a test to see if my body has built up immunities based on the immunizations that I got in the middle of October. Still no idea when/if I'll be able to get H1N1 vaccine.

(Yes, I have begun treatment and haven't written about it, that's my next post and should be up within a week.)

Thank you for your comments!

Somehow I failed to set up notification so I didn't see that some people had actually been posting comments. I have no idea how I overlooked that!


Thank you for the comments about IDF. I've been hanging out at primaryimmune.org since I started treatment and we're hoping to attend their conference next year. I also started subscribing to IG Living Magazine, I quite liked the first issue that I received a couple of weeks ago. I hadn't heard the 5% number for people who have problems with IVIG, we hadn't come across that in the information we had found. We were pretty paranoid when we first started learning what I probably had and thought SCIG was the best way to go.

We're not entirely happy with my immunologist. He's perfectly competent, but his main line is allergies, not immunology. There's not a lot in this area in that line, and we're probably going to be looking at finding another. I'd like to go to Mayo, I'm just disappointed that they don't have any immunologists in Phoenix as that's where I'm from and where my parents are, so free lodging! I'm also checking in to a couple of research programs through NIH though we seem to be having some communications problems.

One of our points of unhappiness is the diagnosis. It's obvious that I have CVID, but we don't think he's done enough to try to determine the cause. I'm particularly not happy that he doesn't seem concerned at the IG subclass report that shows all four of my numbers to be below 25% of the normal range. We're a little concerned that I could have an IgA reaction and that Vivaglobin, and thus SCIG, might not be the product/treatment that I should be on.

We didn't know about IVIG home care when we started researching this stuff. My current immunologist prefers SCIG, which is what we started with. So that's a possibility, we might have to finish out the initial six month approval under SCIG, then we'll probably check in to IVIG at home.


So thanks for the comments, I'll try to be more diligent about responding to them.

Clearly I can't write a good narrative

But I tried. There's a lot of background information about my condition that needs to be conveyed, and that's mostly done.

So we'll jump back a couple of months to July. We finally got the Ig Panel run and it confirmed that my gamma globulin levels were so low that one of them was listed as <4, so I guess they couldn't detect any reasonable levels of it. The diagnosis was confirmed, and my immunologist began arranging treatment.

In late June/early July I had a meeting with my manager and the department director and told them what I had, what it meant, and that I might have to quit my job. At this point I had missed over 8 weeks of work, mostly without pay. Needless to say it hit my bank account pretty hard. They weren't happy at the prospect of losing me but were also very concerned for my health.


My mother-in-law passed away in June. She was cremated in Maine and would be interred next to her husband in Ohio. Because of the cremation, there was no rush to do anything, and it took time to get various people's schedules together, especially to accomodate a relative coming over from Scotland (my parents-in-law came from Scotland in the 50's, my wife is a first generation American).

The date for the service in Ohio was set for the first Saturday in August. I was healthy at that point, but we were very paranoid. To assuage the paranoia, we decided it was in my best interest that we drive: it seemed prudent to avoid being stuck in an enclosed space for three hours with who knows how many sick people and germs. It was also in my wife's best interest to give her some closure by driving the same route that she took from New Mexico to Ohio, she says "for the last time", but I'm sure we'll be back there occasionally.


About two weeks before the trip, I get a call from CSL Behring, a drug manufacturer who makes Vivaglobin, the blood product that my doctor had ordered for my treatment. The treatment is globulin replacement therapy: my body isn't producing gamma globulin, you have to have gamma globulin for your immune system to work well, so by adding gamma globulin you can get a somewhat functional immune system.

There's only two ways to do this: intravenous and subcutaneous. We did a lot of research when we were confident of what I had but before it had been formally diagnosed, and decided that the subcutaneous (AKA SCIG AKA SubQ) looked like the way to go. Intravenous IG (IVIG) can be done at home but is usually done at a cancer center as the process is just like receiving chemotherapy. We didn't want to do this for two big reasons. First, the risk of reaction is much higher: anaphylactic shock being one of the biggies. The second was that my wife spent a lot of time with her mother in a cancer ward and didn't want to repeat the experience with me, even though I would be receiving a blood product, not chemotherapy drugs. And I REALLY didn't want to spend 4-8 hours with an IV in my arm with the very real possibility of being wiped out for a day or two after.

SCIG is a fairly new process in the United States, it was approved by the FDA in '94 or so but had been used in other parts of the world prior to that. The beauty of SCIG is that it's a DIY proposition: you get shipped the supplies and do it yourself at home. A MUCH more attractive proposition!

There's a huge advantage to SCIG over IVIG known as peak/trough levels. When you get IVIG, immediately after the treatment, your blood serum globulin levels are really high and your immune system is as happy as a proverbial happy clam. This is good. However, you typically go 3-4 weeks between treatments, and your level can drop really low before your next treatment, leaving you vulnerable to infection. With SCIG, you infuse on a weekly basis: your highs aren't as high, but your lows are nowhere near as low, so you maintain a much more steady level on a weekly basis. And since all of the equipment will fit in to a box about the size of a fishing tackle box, you can travel with it whereas with IVIG you'd have to make arrangements with other cancer centers if you wanted to travel.


And my inability to properly maintain a narrative once again wanders off-track, but in my defense my sleep has been rather off the last couple of days. I really should outline what I'm going to write about.


Mid/late July: I've been diagnosed with hypogammaglobulinemia, or Common Variable Immune Deficiency (CVID). Treatment is pretty straightforward and is ordered, but treatment is also quite expensive, to the tune of around $9,000 a month if you don't have insurance. My doctor ordered treatment, and we're getting ever closer to our departure date for our trip. I get a call from CSL, and they go over what will be going on and send me all sorts of starter information, including a DVD showing what the process is. They tell me the name of the pharmacy that I'll be getting my supplies through, said pharmacy will also be conducting my initial training and will be my point of contact if I have any problems with the infusion process (more on that later). We get increasingly anxious as time passes by, finally the Friday before the trip I talk to my immunologist: the insurance company has put the treatment on hold pending a review.


And I'm going to pause here as I'm at a convention and want to get over to the events. But, as Douglas Adams so aptly pointed out, stress is a bad thing in our society, so as to somewhat alleviate this, I'll reveal in advance that ultimately my treatment is approved.

I forgot to mention (re: my spleen)

That spleenomegaly is not unusual in cases of CVID. The spleen is essentially a big lymph node, and if your body is fighting infection, it can kick in to high gear. Obviously, having had four bouts of pneumonia this year, it's been working overtime.

Also, the hematologist is also an oncologist, a cancer doctor, and works at a cancer center. One of the problems of living in a semi-rural area is a dearth of specialists.

Well, I don't have cancer, which isn't absolutely a good thing

It's a pretty strange concept. My immunologist sent me to a hematologist because he thought I could have an underlying cancer causing the immune problem. The hematologist ordered a CT scan of my abdomen and neck/head, I had previously had a chest CT scan done at the hospital to confirm pneumonia #4. The result showed splenomegaly, which is basically a somewhat larger and distorted spleen: I also had an accessory spleen, sort of a mini-spleen growing out of the original.

One of the causes of splenomegaly is cancer.

The hematologist had seen CVID cases before, but usually in advanced cancer patients, and nothing indicated cancer in my test results. Still, the CT scan was abnormal, so she ordered a PET/CT scan, which took a little time for my health insurance to approve. She went on to explain that splenolymphoma is actually one of the better types to get in that, assuming it is caught somewhat early, is usually self-contained and removing the spleen usually resolves the situation with no follow-up with radiation or chemotherapy.

The PET/CT scan was interesting. I've previously had CT scans and MRIs, I'd never had a PET scan. And this was a combo PET/CT scan, which was kind of interesting. The CT scan itself is very fast compared to the first one that I had some nine years ago, they did my abdomen/neck in only ten minutes or so when the hematologist ordered the initial scan. The combo PET/CT requires a nuclear tracer injection that measures "sugar uptake": basically, cancer cells are very hungry and will absorb more of this tracer than normal tissue. However, it takes 45 minutes for your body to properly ingest this stuff after the IV is set up, so you sit around and watch TV while waiting.

After the waiting period is up, you're taken in to the machine room. The scanner is essentially two machines in series: they run a CT scan, then the PET scan. The CT is fast, the PET is not and I got a good nap in.

The reason for the combo scan? The CT scan is overlayed through an imaging software package that effectively gives them the ability to examine the distribution of the nuclear tracer in 3-D!

I think that's pretty darn cool, and I have a CD of it!

Unfortunately I can't directly view it as I use a Mac. I have two virtual systems running XP and Windows 7, I just haven't loaded it yet. I really ought to and check it out.

Along with the CD we got a copy of the radiologist report which had some very interesting terminology to indicate that all of the nuclear sugar uptake was normal, indicating that there was no evidence of cancer and that the splenomegaly was nothing to worry about.

Last Wednesday we met with the hematologist to review the results, we also did another blood draw for a CBC and another Ig panel. She had the results of an Ig Subclass which breaks down the Ig gamma globulin into four sub-types, all of the numbers were sickeningly low and the Ig panel numbers for IgA, IgM and IgG were largely unchanged from previous tests. I've now had seven treatments and we'll find out next week if there's any improvement. She confirmed that the PET/CT study showed no cancer, and that would be all we would need to see her for.

This was a bit of a disappointment as she is a fantastic doctor. You ask her a technical question, and she answers it at an equal tech level, assuming that you probably know what you're talking about. My wife has a pretty advanced medical knowledge and started asking some advanced questions and the doctor ratcheted up her answers. My wife ratcheted up her questions, the doctor did likewise. Soon the doctor was talking over my wife's head, and my wife loved it!

So my wife was kind of disappointed that we wouldn't be seeing her any more.


Which brings us back to cancer being a good thing.

Amongst the various kinds of immune deficiency there are primary and secondary. Primary ID is genetic. You're born with it, you might have it all of your life. If it manifests as a child, there's a good chance that your immune system will wake up and you can discontinue treatment, though you'll have to monitor your Ig levels which is no biggie. Secondary ID is being caused by something else, such as cancer of the spleen. If you can resolve the "something else", frequently your immune system will restart, though it might require treatment for a while. So if I'd had splenolymphoma, and they'd removed my spleen, I might have a functioning immune system at some point.

But that isn't what happened. Which means I'll probably be doing gamma globulin infusions for the rest of my life. Weekly. Four needles. Two hours.


Cancer and one operation might not have been so bad.

The Placebo Effect

Placebos are fascinating things: basically inert sugar pills given in lieu of actual medicine. Well, it seems that big drug companies have been canceling drug trials because their new pills have been faring no better than placebos in trials.

I came across this article in Wired, and though I haven't finished reading it yet, wanted to write a little about it.

Now, I'm not sure what to think about placebos in relation to my condition. My body isn't producing gamma globulin, this is known. It's also known that intravenous and subcutaneous injection of gamma globulin products can stimulate the immune system into functioning properly. I definitely don't know whether or not I'd want to participate in a trial that could involve placebos.

Lung Doctors! And what to avoid!

The city that I was living in is a little on the small side, somewhere around 80,000 people, and it had only one pneumonology group with three doctors. I made an appointment to see one and had to wait a month, the appointment was for the second Friday of May. I already related that we weren't too impressed with this guy, and when I got sick the following week, we found out that he was out for two weeks.

I don't begrudge a person taking vacation. Doctors certainly earn it. But we got some "I don't think this guy is what we're looking for" vibes from our initial meeting, and they quickly ramped up in amplitude.

He looked at the x-rays by holding them up to an overhead light, not by using a light table, and shuffled through them quickly. This did not inspire confidence. Then, despite the signs throughout the building and our exam rooms asking people to turn off their cell phones, he took two calls during my time with him. Respect goes both ways: if you want us to turn off our phones, you should turn off yours. Now, I fully respect that some people have to leave theirs on, and a doctor certainly falls in to that category. I was frequently on call and had to be reachable, so when I was at movies I'd leave my phone on vibrate and hang it around my neck. And if I ever had to take a call where people had an expectation of not being disturbed by cells, I left the room.

He didn't. Both calls did not seem medical-related, which greatly added to my wife's frustration with this guy. Still, we respected his opinion and followed his advice, picking up a nebulizer and another couple fistfuls of meds.

He was brusque, he interrupted us constantly as we're trying to explain things, and he kept steering the diagnosis towards severe asthma rather than pneumonia. And I will admit that the meds did improve my condition for the third and fourth pneumonias, so obviously asthma did have something to do with it.

But we didn't stay with this turkey long.

As I said, the third pneumonia started possibly the day after I saw this guy and I couldn't see him. When I had my fourth pneumonia, my regular doctor told me to either see my lung doctor or go to the emergency room. That was more than a little frightening, so we called the doctor to see why he wanted the ER involved as I was feeling a little better, it was nothing more than he'd gotten the radiologist report back on the x-rays and wanted a confirmation. So he wanted it verified either by my lung doctor or the ER.

I call the lung doctor and am told I can't see him this week as he's at the hospital. I ask if I can see one of the other two doctors in the practice. And this is the point at which we fired him: I was told that to see one of the other doctors that it would be a new patient intake and it would take a month to see one of them.

They have three doctors in one practice. And they don't share patients between them.

Bye bye, don't let the door hit you in the butt on the way out.

I canceled my follow-up appointment with him and will never set foot in that office again.


We went to the ER, explained to them that we needed a confirming examination. They did blood work and a CT scan and confirmed my pneumonia, all to the tune of a lot more money than we would have liked to spend. They also agreed with my doctor saying that having a bronchoscopy would be a logical next step.


A little more background info. At that time, I was living in Las Cruces, NM. The next closest bigger city is El Paso, TX, about 40-50 miles east. I look up lung practices on my insurance plan's web site and find one that has an office off the interstate on the west side of town, which is very convenient for coming from Las Cruces. I call them and go through my history of four pneumonias and that I probably need a bronchoscopy, and I cap it all off by asking what's the soonest I could get in and see anyone? The say "How about tomorrow morning at 9:30?"

I was gobsmacked. Needless to say, I took the appointment.


The next day I drove to El Paso and met the doctor. Unfortunately the imaging center that did my previous x-rays mis-filed mine, so I had no images to show him, but I did have copies of all of my blood work. He shot another pair of x-rays (front and side) and confirmed that I still had pneumonia. Apparently pneumonia that doesn't put you in the hospital takes about a week to clear to the point that you're reasonably functional, at least that's been my case in these four bouts. But it actually takes around six weeks(!) to completely clear! (Which, upon reflection, means that my fourth pneumonia overlapped with my third: the third had not completely cleared before the fourth hit)

He is an excellent doctor and actually discusses things with you, very different diagnostic approach. In the end he agreed that a bronchoscopy was the next logical step. I asked him how soon we could do it, and he replied "How about tomorrow morning?"

Cue gobsmacking music.

I could not believe this! Either I was the luckiest twit in the world and had fallen in to a scheduling hole that permitted this, or I had finally found a practice that was properly staffed that they could see people and help them promptly.

Sadly I could not do the bronchoscopy the next day. This procedure requires what they call conscious sedation, and I could not drive afterwards. My wife was out of town and wouldn't be back until the following week, so we scheduled it for then.

Conscious sedation is a bit of a misnomer. It isn't as deep a sedation as if you were having major abdominal surgery or hip replacement or something, but you're not really conscious for the procedure. For all practical purposes, you're fully sedated.


If you ever find yourself needing a lung doctor in El Paso, drop me an email and I'll be quite happy to recommend this guy to you.


That's enough for now, more later.

Primary Immunodeficiency vs Acquired Immunodeficiency

I have a diagnosis of hypogammaglobulinemia, meaning that my body doesn't produce enough gamma globulin to keep my immune system functioning. This is an immune deficiency. HIV/AIDS is an immune deficiency. The difference is that AIDS is an acquired immune deficiency, you get it through sex or blood (Isaac Asimov, the science fiction writer, died of AIDS: look it up. He had heart surgery when the blood supply of the United States was tainted.)

What I have is probably a primary immunodeficiency, meaning it's genetic and that I've had it since birth. My mom says I was kinda sick as a child and had measles twice, I can't really say that I remember that. I didn't think I was overly sick: I tended to get bad colds 2-3 times a year, typically when the semester started and you were exposed to all sorts of additional germs. It was probably a symptom for what I have.

A primary ID is not transmitted sexually, though it's possible that if I had kids they would run a risk of having it.

There's also secondary ID, in this case something is causing the ID, like splenolymphoma or something like that. There is actually an advantage in SID in that frequently when the underlying cause is resolved, your immune system may recover.

Obviously a secondary ID cannot be transmitted sexually.

We currently don't know specifically whether what I have is primary or secondary, we should be getting more information on that soon as I had a PET/CT scan last week.

There's probably more types of ID than these three, but I really don't feel the need to dig further at this time.

Welcome to Primary Immunodeficiency!

This blog comes as a result of me having a very interesting first half of the year. For a bit of background, I'm a 47 year old male living in southern New Mexico.

And I had pneumonia four times this year.

In this blog, I'm going to talk about what I have and what my treatment is like.

So me and pneumonia.

It started in February. In November I was diagnosed with severe carpal tunnel in both wrists and the decision was made to operate. The first operation was in February, and though painful, it was endurable. The stitches stay in for two weeks and you're out of work until they're removed, which happened on a Wednesday. I went back to work Thursday, worked Friday, and on Monday I had pneumonia.

Out of work for a week. Chest x-rays. Bloodwork. Antibiotics.

Next week: worked half-time or less. Very tired and weak, but feeling progressively stronger. The following week had me back working full-time, but still tired and weak. Follow-up x-ray and bloodwork shows me being back to health.

Pneumonia number two was in April. This time it was the week before my second carpal tunnel operation. Fortunately it cleared before the operation and it went along as scheduled. Same routine: out of work for a week, then out of work for two weeks because of the operation. At least this time the recovery overlapped.

My doctor said to go to a lung specialist. I make the appointment, but since I'm a new patient, it's a month away and set for early May. The day roles around and we meet with the guy and are thoroughly unimpressed. He looks at my x-rays by holding them up to the light and claims he doesn't see any evidence of pneumonia in the February x-rays. This disagrees with the two radiologists who thought I had pneumonia, not to mention the bloodwork that showed definite bacterial infection. My wife and I are decidedly not impressed with this guy: he says I had bad bronchitis and that bronchial plugs were responsible for my illness and caused the fever.

Well, that was on a Friday and we scheduled a lung function test for the following Monday. At which point I was sick and running a fever. I still show up for the test, though I explain to the technician that I am ill, and she thinks that's a good thing because we'll see how bad my lungs are when I'm ill. She also tells me that the doctor is not in the office today.

Well, that sucks. I go back to my doctor, he's pretty sure that it's pneumonia again based on characteristics and listening to my lungs. But this time we don't do an x-ray as I've already had EIGHT chest x-rays at this point, so he just puts me on antibiotics and tells me to take the week off and to call my lung doctor.

I call my lung doctor, and I'm told that he is out of the office. FOR TWO WEEKS. It would have been nice for him to tell us that when we were there the previous Friday! I ask to see one of his partners as there are three pneumonologists in that practice and I'm told that I can't because one is covering the hospital that week and the other is unavailable. Grrr....


Well, once again, it's take the week off, go back to work the following week at half-time, etc.


I get better, until three weeks later and....


Pneumonia number four!


When I made the appointment to see the lung doctor, I also made an appointment to see an immunologist as there was obviously something seriously wrong with me. My wife started researching recurrent pneumonia and found some interesting stuff, and later in June I got in to see the immunologist.

Initially we weren't impressed as he was pursuing the angle of allergies. You see, a lot of immunologists are also allergists. And like the lung doctor wanting to blame everything on asthma, he had a bit of a hobbyhorse to ride. But he was more responsive than the lung doctor was, and he ordered the test that my wife wanted run: an IgP panel, which shows your gamma globulin levels.

Gamma globulin is vital to the proper function of your immune system. Mine were in the gutter, far below the minimum levels.


Obviously I had a problem.