Tag Archives: specialists

My Blood Just Might Be Slightly More Interesting Than Yours

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Vast knowledge makes you strong.  A little knowledge is a dangerous thing.  My dad used to say that last bit.  And it follows that if you believe something, it is very real in its consequences.  So if I believe my left foot is possessed by satan I might be inclined to cut it off.  Even though my original notion was probably wrong, I still end up hopping about on one foot.

I’m sure there’s a miraculous point in there somewhere, although it could be simply a tangent my brain took off on when I remembered my great love of medical dictionaries and encyclopedias in my youth.  Those books have been replaced by Google.  I had a mothers medical book when my kids were small and was able to diagnose them with every childhood affliction going.  Now there are millions of new conditions so I have great empathy for todays parents and their boggled minds.

I still research diseases and random symptoms and come to wild conclusions.  Then I go to a real doctor to be assured that I am not in immediate danger of dropping dead.  So far they have all been very accommodating.

The condensed version of my medical history is just as likely to lull you in to a coma as the detailed one, so I will skip over both of them and jump right to the diagnosis.  IgG4.

Yes, of course, I could not have something mundane and ordinary.  IgG4 is a rare systemic fibro-inflammatory disorder.  Here is what I know about it, even though I have googled these facts and realize you are not supposed to blindly believe everything you google.  Hasn’t stopped me yet.

Immunoglobulin G is an antibody found in blood and extracellular fluid which controls infection of body tissues.

By binding many kinds of pathogens such as viruses, bacteria, and fungi, IgG protects the body from infection, neutralizes toxins and helps maintain food tolerance by the immune system.

Inflammation is a result of infection.  

Okay.  The original specialist I saw no doubt said all this to me because he wrote it all in a report which I didn’t see until very recently.  Two years later.  All I heard was NOT CANCER blah blah blah.  He said he didn’t know the cause of the infection or the inflammation, gave me heavy-duty antibiotics and then a course of prednisone, and since neither made any difference suggested we forget about it.

The inflammation never went away so my doctor and I thought a follow-up visit in a little over a year would be a good idea.  Same clinic, different doctor, and it’s like he never read my file and started over again with all the same tests.  Eventually he didn’t know what to do with me next and referred me to a lung specialist.  I learned more in that one visit to them than I figured out from him in six months.  They are the ones who showed me the original doctors report.  They sent me for blood tests and then referred me to a hematologist.  I saw her on the 3rd of August and she was wonderful, even though she sent me to a lab to have seven more vials of blood taken so they can analyze the hell out of it.

Her diagnosis, unless she finds anything new, IgG4.  Treatment for now – none.  Steroids could cause more problems than they solve so no point in going that route yet.

The inflammation hasn’t spread much except to a lymph node behind my esophagus and a couple in my lungs.  Any organ in the body could be affected.  It seems to be a little unpredictable.  Fibrosis is a possibility.  Not a lot of studies have been done on this yet and there are differing opinions. But really, I am done losing sleep over it.  Skin rashes and thyroid problems and type 2 diabetes are all related and I remember saying once I thought whatever was going on was a systemic thing and holy crap, I was right.  Maybe everything is systemic, I don’t care, I still think I’m smart.

On Wednesday I’m going to see a dermatologist on the hematologists recommendation.  Then I would like to do what the original specialist suggested and forget about it.

How’s that for a plan.

 

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Not Broken, Just Cracked

 

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Or a little bent, perhaps..  Maybe a LOT bent and cracked and scrambled and ready to shatter with one more shove.

So get out the glue.

A good life isn’t necessarily a big life, or a long life or even an “important” life.  Whatever it throws at me, I’m happy to be living mine.

Well, what a lot of blather that was.  I’m sure I could go on and on avoiding the point for much longer than this,  but here’s the reason I’m currently allowing myself to wallow a bit.

About six weeks ago I noticed some swelling just below my jaw on the left side of my face.  I thought it was a swollen gland.  I went on holidays and more or less ignored it.  Even convinced myself that it was going away.  Then I got more swelling up closer to my ear, and on the 12th of June went to see my doctor.  She suspected a blocked salivary gland, maybe even a stone, and told me to go home and suck lemons.  Really.  I love her.  She also gave me a lab requisition to book an ultrasound, but the lab told me this type of ultrasound is more specialized and has to be booked at a hospital.  I was eventually scheduled at a new clinic across from the University Hospital for June 24th.

I had the ultrasound done around one o’clock and then drove straight to work from there.  At four thirty my doctor’s office called to say they had the results back and my doctor would like to see me as soon as possible, could I come in tomorrow morning?  Yes I could.  And could I bring someone with  me?  What? Why?  Well, for support.  Dead silence while I tried to digest this.  Really?  Is it that bad?  I felt sorry for the person who had to make this phone call because they’re not supposed to tell you anything.  But sometimes by not telling you anything they tell you a lot more than you want to know.

I’ve already been through a very similar experience with my thyroid investigation, when I was called in to the doctor’s office very quickly to discuss the results.  That was over ten years ago.  I had to go for a needle biopsy after that.  Those results were fine, but because of some pre-cancerous growths I was given the option of having surgery to remove the unhealthy looking bits and ended up with practically all of my thyroid removed.

After this phone call I spent a restless evening (with the help of the internet) imagining every worst case scenario there is, and a few more after that.  I wore myself out.  So when I went in to talk to my doctor the next morning (on my own) and she told me the radiologist thinks this looks like it could be a cancerous lump, I was kind of numb to it all.  Yes, okay.  So what’s next?  Blood work and urinalysis, which I had done in the same building right away, and arranging for a CT scan to be scheduled.  There are two specialists she can refer me to when we have the results, depending on which one is able to see me first.

Then I went home.  And now we wait.

I phoned W and he says he will come home.  I know I must talk to my kids and my sisters, although I would prefer that they be oblivious to it all for as long as possible.  Worry is such a piece of crap thing, ruining your day with no good result because it doesn’t change a thing.

And it might be nothing.  IT MIGHT BE NOTHING.  I have no other symptoms.  I feel perfectly fine.  I admit I’m feeling rather sorry for myself and it feels therapeutic just to put it all into words for now.

But here’s some things that boost me up.  Maybe this is the glue I was talking about.  The morning of the 25th, (which was the day after what would have been my dads 100th birthday) when I got up to make coffee, there were three magnificent magpies strutting about in the backyard.  I have always considered magpies to be a very good omen.  They remind me of my mom and my family.  I haven’t seen any of these birds around here for weeks.  Just as I was leaving for the doctor’s office there were FIVE of them out there, on the lawn, on the garage, on the new fence.  Flapping and squawking and not flying away. They haven’t been back since, but they were there when I needed to see them.

I pulled out my type-written notes and re-read some of the things the psychic told me last July.  Things that didn’t really register at the time, but now seem to make perfect sense.  New female GP,  some problem with my neck,  June 2014, two specialists,  some sort of procedure, not life threatening, trust that you will be in very good hands, everything is going to go much better than anticipated.

Am I a superstitious fool to take great comfort in the appearance of some magpies and in these words?  I don’t care.  I do.

CT scan is now scheduled for the 7th of July.  That’s fast.  That’s good.  There are happy days to be grateful for in the meantime.

Dredging Up the Past

 

I clicked on the little button on the left that says Random Post and this is what popped up!  A day in my life from five years ago.  I found it interesting because I’d pretty much forgotten all about this funny little episode.  When there’s currently nothing I can think of to complain about, maybe I’ll just dredge up some random whiner of a post from the past.  And just for the record, my chronic fatigue had a lot to do with a too low dosage of thyroid meds and it took going to more than a few specialists in various fields before my doctor agreed that normal for other people was not necessarily normal for me, and to bump up the dosage.

 

Snoring Cat
Snoring Cat (Photo credit: Randi Deuro)

Apnea Schmapnea

 

April 29, 2008

To get to the bottom of my chronic tiredness I agreed to be tested for sleep apnea. What insanity. I realize the condition is a serious problem for a lot of people and that there are different kinds of sleep therapy that can often work wonders. I don’t think I have it, but to satisfy my curiosity I filled out the forms and answered all the questions. I have some of the symptoms, but definitely not all of them. I’ve never fallen asleep mid conversation with someone. I find myself infinitely too interesting for that to happen. Ha. And I’ve never fallen asleep at a red light or anywhere in traffic if I’m driving. (Being a passenger with W. at the wheel is a completely different story, and I can nod off before he puts the vehicle in drive.) My tiredness has not really affected my work, except for some extra crankiness. And the inability to concentrate combined with memory loss can be simply explained when you consider my life long state of being dazed and confused combined with advancing age. Right? I would say right. Yes, I snore, but no one has ever mentioned that I’ve stopped breathing in the middle of it, unless I get so loud that I startle myself awake wondering who the hell is making that godawful racket.

So I drove all the way to the west end of the city to pick up the equipment, got the in-office demo and brought home the instructions for hooking up the little black box that records sleep patterns.  I watched the little 8 minute video of someone with a severe case of sleep apnea happily strapping the CPAP (Continuous Positive Airway Pressure) machine on his head at night and the next day playing frisbee with his sons on the beach.  This kind of thing can actually happen, or so they would have you believe.

What a horrible night I had.  Getting myself all wired up and taped together was not the hard part – it was figuring out that if you do your finger first, the throat and the nose become much more complicated.  And once you’re attached in three different ways, you are pretty much committed to being trapped in bed – you should have made your last trip to the bathroom WAY before now, you moron.   How this whole procedure can end up with results that are anywhere near accurate is beyond me. The tape on the ‘microphone’ on my neck was gross and painful.  In my zeal to get it right I used enough to strangle myself.  The finger thing was annoying as hell, sort of like a weak clothes pin easily knocked off and able to make the box beep accusingly whenever that happened.  More tape needed, but careful not to cut off the circulation.  I used up a whole roll of tape already on my neck  Then there’s the oxygen-like tubing that left an indentation across one side of my face for almost four hours after I took it off.  Yes, I DID time it, making a mental note that an actual mask could conceivably disfigure my face permanently.   And those little probes stuck up my nose were fine as long as I didn’t move.  Otherwise they tickled and itched and no amount of tightening or loosening the strap under my chin made any difference.  I did discover that when it was too tight it made my ears hurt.  They really should put that bit of info in the book.

I must have wakened up a dozen times during the night tangled up in wires. Although I really wanted to just say F THIS” and rip everything off I did persevere until 7:00 a.m.  At which point I actually did say something similar.  And not using my inside voice.  Then I made the drive all the way back across town to return all the rigmarole and have the information I recorded under great duress fed into a computer for a preliminary analysis by my sleep specialist.  That might not be her exact title, but at that moment I didn’t give a flying fig how her damned business card describes her.  She told me I was the second person that morning to tell her they’d just spent the worst night of their lives, sleep-wise.  You’d think she’d be used to hearing that.  Then I got to sit and yawn a lot and wait to be ushered into her office to sit down once again, this time in the big blue lazy boy chair.  I’m not seeing the use of that particular chair as a good business practice for these people.  But I did manage to stay alert while she explained to me that the results show I’m borderline for needing one of those sleep apnea machines.  She would still like me to try one, but it might not make a significant difference in the long run.  Normal times to stop breathing in the space of a minute are five and under.  I’m at 6.8.  My blood oxygen level during sleep was 8.9 and I believe she said that’s low but not excessively so.  She now sends this incredibly interesting information off to a doctor for further interpretation.  And we both presumably wait with bated breath to see what he has to say.

Oh yeah, and she begs to differ with W., my snoring is NOT off the wall.  It’s MODERATE.  Jerk.  Snort.  Etcetera.

Our session did end on an extremely pleasant note.  She asked me to verify my birthdate, since she thought she must have made a typing error when she entered it into the computer.  Then she did a really believable version of looking shocked, saying she simply could NOT believe I was that old.  I have now forgiven her everything.  My crankiness level shot down to about half in a matter of seconds.  Now an afternoon nap (a lovely wireless one) should get it right back down to normal.