Brain and Brain! What is Brain???

I have no idea what the title of this blog has to do with the content but I was thinking of this entertaining Star Trek quote.... I was released from the hospital yesterday - in the afternoon about 2:30. Overnight was not bad. I fell asleep soon after the blog entry, was awoken around 11pm to check some vitals then I slept for about 6 hours with the help of some percocet. I slept on/off through the morning but the bustle around the hospital kept me awake. The doctors came by early to check on me and let me know I'd likely be leaving that day. I had only been on the pain meds since the operation and my blood pressure was normal. I was running a low-grade fever but this did not seem to be much concern. I took a walk early in the morning and one later in the afternoon. My afternoon walk I hooked up with a gentleman from Alaska that had had his bladder replaced due to cancer. He had been through three months of chemo already and had just had a new bladder constructed out of a portion of his small intestine. And he was out-walking me! He had had his surgery the previous Thursday however ;-). He was still in amazing spirits and quite healthy - told me he had been working out specifically to deal with his condition over the past several months and it showed. I'll give fair warning now to stop reading if you don't want to hear much about the details of what else post-surgery involves :-). The big concern of the hospital staff is if I was passing gas or not. I started the night before. This is apparently a big deal to make sure my gastro system was functioning after the surgery. Fun stuff. The good news is that more movement tends to get that system going and gets the CO2 that was pumped into my abdomen during surgery absorbed. The only prescription I had was for more percocet so we stopped by the drug store on the way home. Also decided to stop by work at the end of the day to say "hi" to the crew. It was nice to see everyone. We had also had our chili cookoff so I brought some chili home. Once I got home I was pretty exhausted - went to be about 7pm and woke up periodically through the night. I took two doses of percocet in the night and let me tell you - dreams on narcotics are pretty intense. Random dreams about Arby's and Allen Field House and being chased by dogs. And in full cinescope color! This morning woke up about 9am and did myself the favor of taking a shower. The following picture is from the IV I had in my neck - I guess it was about the width of a straw. Starbucks straw - not those thin wimpy ones.

Dad and I walked over to Starbucks this morning so I'm trying to stay active and moving. Will be heading over to the grocery store later today as well. All in all things are going smoothly and things are healing up on/ahead of schedule. Most importantly today is to see KU beat Texas in the Big 12 game of the season - should be a good game.

Gut Check

I can now cross off my list of things to do "spend a night in ICU." So, the surgery went off as expected - of course I was out for all of it so what do I know? :-)

The pain is amazingly slight. The last thing I remember is the doctor trying to get the A-line in my wrists. I woke up with this A-line in my femoral artery (groin) in my right leg. As advertised I had an IV in my neck; not advertised was the catheter. I was hooked up to several macines including some cool leg wraps that inflated every five minutes to massage my legs and aid circulation.

I slept on and off through the night. I was hooked up with a personal pain medicine dispenser (this has some acronym I cannot remember). I only used it 5/6 times.

Morning brought solid food - 1/2 banana, oatmeal, french toast, and juice. I got some down but abdominal pain made me not want to take too much.

Around 10am the tubes started coming out. The A-line was worst as it required several minutes of pressure on the artery. The catheter was amazingly painless as was the neck IV.

I moved back up to the 17th floor around 11am. I tried sitting up early which was quite painful. What is interesting is how much my shoulder hurts (left) - I apparently got yanked pretty well in the OR.

Of course you learn to rate your pain on a scale of 0-10. Pretty sure I've never been at pain = 10 so it's a little hard to rate. I've been taking perkased today for the pain which has been tolerable.

Just took two laps up and down the hall for my first outing. I also ate all of my lunch and dinner so am holding down food. I assume if I get a good night's rest I'll be home tomorrow.

As Tue/Wed the hospital staff has been top notch and very helpful. The stay has been very pleasent and comfortable.

Hopefully I will be released tomorrow so I can type from my keyboard and not the Treo.

Can I Keep This Gown?

One final post before I hit the OR. My Treo works so will take this chance to document my hotel stay so far.

Dad and I showed up before noon yesterday - our scheduled check-in. No matter - was in my 17th floor room soon enough (nice southern view). The only bad part is my last meal was 8pm the previous night - I was instructed to be on a clear liquid diet all day. I eventually got a fine lunch of chicken broth and red jello (dinner was beef broth and yellow jello). Of course when you are starving every commercial seems like it's for pizza or steak. Needless to say much of my hospital stay so far has been planning my release meal.

I was on IV all day - three bags of saline to make sure I'm fully hydrated. The only drug fun was my enema fluid to make sure I'm emptied out (and without going into detail it works).

The only glitch is my anesthesiologist was over hours so is not able to do the surgery. His partner is taking over and is just as experienced so no worries. I actually was just visited by my 3rd surgeon which makes five doctor visits since admission. They are prepared and so am I - I am in good hands.

Surgery is for around 9:20 am and I'll be getting prepped an hour before - the general then the epideral then out like a light. If all goes well I'll be in recovery around 1pm with a few small incisions in my belly and one less adrenal gland.

If all goes well i'll be out on Friday.

I will close by saying I slept well without any drugs. Not nervous at all. I will talk to you all tomorrow.

T-24 Hours

So here we are at the final post before surgery. I am admitting today to the Virginia Mason hospital (downtown Seattle) at noon. I am scheduled for surgery first thing Wednesday morning which means about 7am or so. Everything to this point is checking out. I had a long conversation with the anethesiologist yesterday and he's certain everything will turn out well. This also marks the beginning of my fast - no solid food for the next couple of days. Whee! Not quite sure what to expect from today other than some monitoring, likely a fair amount of blood testing and such. See you all on the other side.

Full Steam Ahead!

Seems that it's been awhile since my last post. In this case, no news is good news. I have been consistently upping the dosage of alpha blockers and expect to be on 4x 40mg a day starting tomorrow. Those following closely will be happy to know that my BP has dropped consistently under 135/90 which is considered the upper range - this morning got a couple in the 110/70 range which used to be normal for me. The upside is I am not sick of Gatorade yet and am probably going to be single-handedly responsible for a banner quarter for them. By 10am yesterday I had guzzled 64oz already and by end of day I had gone far north of a gallon consumed. The bad news is the doctor's prediction appears correct - I've gained about 10 pounds. I just hope it's all fluid :-). Ah, yes, I started the beta blockers yesterday. As the doctor says this weekend we were really going to start pounding on me with the drugs. Frankly I have not felt that lightheaded. Then again I've been pretty much lying on my butt as opposed to being up and around like at work last week. The new drug is metroprolol and I'm doing 2x 50mg of this cute pink little pill. All I have to say is good riddence to the atenolol - I'm sure these are similar but I had such a bad experience with this bad boy the last time b/c I was not on the alphas yet. Tomorrow is a company holiday so I'll be continuing to rest. Not much of a three-day weekend but that's ok. I'll be checking in on Tuesday at noon and expect everything to stay constant between now and then.

Can I Get a Fix Man?

Not much drama to report in the quest for adrenal gland removal - of serious note anyway. I do have a story to relate that my friend Todd will no doubt find at least mildly anecdotal. So, last we left off I had met with the surgeon. Friday I went in for another CT Scan which was pretty much like the first. The only real change is that I got to drink two of the mystical drink rather than just one. Dr. Don called on Monday to let me know the EKG and Echo results were good. I have been continually upping my dosage according to my marching orders. So, I realize on Saturday that I'm running low on pills. Walgreens has a nifty feature where you punch in your prescription order as long as you have refills remaining (long-time readers will remember the trials I went through to get my first prescription). I fill in my information and wait. And wait a bit more. Then I think maybe Walgreens is using the Aspen Notification Service and I'll get my confirmation email later. Sunday - no email. Walgreens doesn't love me. Monday I call. I only have 10 of these bad boys left and I'm going to take 8 today. The pharmacist tells me that insurance will not cover my pills. Incredulously (and before I go any further and before my pharmacy friends out there grill me I will mention that I rarely get prescriptions and I have never once in my life refilled one) I ask why not? Because your prescription was for 10mg a day and it's only been 8 days. Oh yeah - that secret underground drug trade in alpha blockers - I remember! Actually, I get it but was just not ready for it. Well, I knew my anethesiologist was out that day already because I'd called to check in. So, I called back hoping to get another doctor to greenlight some new dope for me. Nope - got hooked up with the doctor who said he'd take care of it (and of course wanted to know how I was doing as well as how the BP was and if I'd kept my spreadsheet of BP current). He calls back in about 10 minutes to tell me my new prescription was for 40mg 4 times a day which as far as I can tell is the maximum amount I could get (Bucket - please confirm). Let's just say I'm not running out of alpha blockers anytime soon. The good news is they are working. The dosages are going up and the BP is dropping (it's been in the 155/90 range and today I got a 113/74 which is quite normal if I do say so my damned self). Time for another test and to update the spreadsheet. Life is good.

A day in the Hospital (and another date identified)

Today I met the surgeon and team that will be doing the surgery. Overall I am very happy with who will be doing this - very much interested in this type of surgery and also has a history doing it as well. My appointment was early in the morning so I went on the way to work. I first met with one of the doctors on the team (Dr. Don I think). We went over my history again and he showed me an image of the CT Scan - essentially the right adrenal gland (the good one) looks kind of like a slug but the left looks like a golf ball. Dr. Biehl then came in to go over the procedure and answer questions. The procedure will be attempted laparoscopically but they may have to make a game-time decision to do an open surgery. This can happen if there is a blood vessel in the way or some other kind of complication. I will be admitted the day before to take an IV in order to get properly hydrated. The surgery (officially known as an adrenalectomy) will take 2-3 hours. I will spend the night in ICU in order to monitor my heart/cardiovascular system. Then another 2-3 days in the hospital and then another 2-3 weeks before I can be fully back to normal (meaning back to full exercise). An interesting note is that this will involve removing the entire adrenal gland and not just the growth. It has taken over too much of the tumor at this point. This answered my question of "why do you call this an adrenalectomy when an apendectomy is removing the appendix?" (point of fact - this was the answer to that very question from me). In order to make sure I do not have a larger condition known as Multiple Endocrine Neoplasma the doctor ordered another CT Scan but to run my full chest and through the pelvis (the last was just my abdomen) as there are glands in those areas where other tumors might hide. He also wanted some additional blood tests, and EKG, and a heart echo. I next met with the anethesiologist - top rate guy. He is the doctor that is going to control my meds before and of course during the surgery. So, we'll up the dosage about every two days from here on out. Oh, oops, I forgot - I will be having the procedure 2/22. That's in just 13 days. So, by the time I get to the operation I'll be on 60-80mg or more of the alpha blockers per day. A few days before he will also put me on a beta blocker to help control my heart. The beta blocker has a regulatory effect on the heart so the heart rate will not spike. And I will be drinking liquids like nobody's business to compensate for the lower blood pressure - gatorade perferred (or other sports drink) to get the electrolytes. He expects me to gain 10-15 lbs. during this time just in water weight. During the operation I will be under a general anesthetic (administered through IV) and will also have an epideral. He will also have an IV in my neck in order to be able to specifically control my heart. This all points to this being a very serious procedure (make sense - we are balancing a very delicate and crucial system in my cardio system). This also reminds me a bit of my job in some ways - the doctors have a pattern in their history to follow, ie other surgeries they've done and specifically adrenalectomies. They need to gather as much information as possible including how strong my heart is thus explaining the tests. In that spirit I will be keeping track daily of my BP to make sure it's lowering. So, after this I went downstairs (to the anesthetic department) to get my EKG and (horray!) have some more blood drawn for more tests. Thus ended my trip to the hospital - about 2 hours in total. But, I then returned in the afternoon for my heart echo (aka ultrasound). Very uninvasive and quite interesting actually (I have never seen an US before). Pretty cool software as well behind the scenes. So, you get to watch your heart beating from all different angles. The purpose here is to make sure the heart has no damage as can happen in cases of increased adrenaline over time. So, not a bad day in the hospital overall. The diagnosis is complete and I have my team picked out that will do the surgery and this is the right group. The fact gathering has begun as well and I have my CT Scan tomorrow.

First Results

Today not much specific happened other than I got results back from the chest x-ray which showed no metastis in my lungs. This means a very near 99% chance the growth is benign but this is not absolute until the tumor is removed and a biopsy performed. The doctor also upped my dosage of Dibenzyline to 10mg twice a day. The good news is since I started the drug I've had no attacks. I have felt a couple of head rushes as a side effect which was expected. Also, the BP has gone down a bit which is also good.

And the Winner Is......

So, I met with the endocrinologist today. Let's skip to the back page - I have pheochromocytoma. Now, let's get to the details (or skip ahead to the next article). So, the CT showed a 4cm (read: golf ball) tumor/growth in my left adrenal gland. This is of course as suspected. Most of the research I've read so far has been true so no sense in rehashing the details. Of note is that my original doctor had noted possible PCC in my blood sample. Why I was not taken down the path of urinalysis or CT Scan at that point is beyond me. So, the doctor decided that it might not be a good idea to run a marathon so it's time to bring the exercise levels down - casual exercise only. Also, the beta blockers that were prescribed to me are actually making the problem more acute so I am off those. He prescribed an alpha blocker (dibenzyline) which essentially "blocks" (no kidding....) the alpha receptors in the cells. These receptors are sensitive to the epinepherine and so this will help the high blood pressure. Essentially I need to consistently increase my dose over the next 3-4 weeks before surgery in order to get my system balanced. As far as I can tell there is a risk, if not balanced, that messing with the adrenal gland could violently increase my blood pressure (read: heart attack) and then cause it to drop to very low levels as the adrenaline supply is cutoff. This would seem to be bad during an operation. I will therefore be incrementally decreasing the adrenaline effect in my body pre-surgery. Oh, yeah, so this is important. It does not appear to be malignent (based on size, shape) but the doctor ordered a chest x-ray to be sure. Also ordered another blood test to check out some calcium levels that might indicate a bigger problem in the endocrine system. So, I took a quick jaunt upstairs to radiology to get zapped then back down a floor to give up some more of my blood. Now, I have never had to have a prescription refilled. I don't much believe in drugs as a rule (I would rather diagnose the problem rather than just treating the symptoms) so color me surprised when I was told at the Renton neighborhood Rite-Aid that they did not have Dibenzyline in stock. I called the local Walgreens to no effect. I decided the better part of valor was not to sit there and burn 411 calls trying to figure out who had this drug in stock (I was now discovering that drugstore inventory is not shared between branches) and instead head home to call from my handy computer. Well, the local Bartells did not have the drug either and it was approaching 9pm so I figured I would wait until tomorrow. The good news is that I found a Walgreens in Bellevue that had the drug in stock and got this Saturday morning. We'll have to see how they work but being off the beta blockers a day has resulted in a much better feeling. Oh, BTW, I will get back the x-ray and blood results on Monday when I'm in San Jose so should know more then. I also scheduled an appointment with the surgeon for next Thursday at which time I presume that I will have a surgery scheduled.

Pig in a Blanket

Well, I have now had the pleasure of experiencing a CT Scan. All-in-all not an unpleasent experience. The basic premise is that they run you through a machine that has a laser that "slices" through your body and images it as you go. In this particular case they were only looking at my abdomen in order to identify a tumor in my adrenal gland. BTW, the adrenal gland sits on top of the kidney. In order to prep you must not eat for four hours ahead of time and when you arrive you must drink some think liquid which presumably coats the digestive system (I honestly did not ask...). Then you wait for an hour which I suppose gives you enough time for the liquid to get to the intestines. The only real problem here is that I did not know that an hour wait was in order. Again, not normally a problem unless there aren't any magazines from the last four years in the waiting room. How much fun can you have on a Treo in one hour? I found out (the answer is "not much"). So, the procedure is fairly uneventful. A CT-tech (rad-tech?) fits you for an IV so that they can inject you with contrast during the procedure. You are led into a room where you lie on a table - in my case I had to hike my jeans down to clear way for the scan. And then the fun begins. Now I am in no way claustraphobic. But I of course noticed the posters of scenic wide-open vistas intended to comfort those patients that are. They fit you with an IV and you are ready to go. Back and forth on the bed as they slide it through the tube. A nice computer voice tells you when to breathe and when to hold (I would have preferred a "you can now breathe" as opposed to the curt "breath" command - the Enterprise computer is so much more polite). The only really funny thing is a sign that says "laser beam blah blah blah....do not look into it" right above your eyes. Why not just give me a big red shiney button that says "do not push!" I patted myself on the back for not blinding myself during the procedure. Halfway through they stop for a moment and come over and inject the contrast through the IV. It's a very warm feeling which ultimately makes you want to go to the bathroom (like going into a warm pool or having your hand soaked in a warm bucket of water). The feeling was a bit much but then again I have a ton of adrenaline coursing through my veins (presumably). They slid me through a couple of more times and then unhooked me and told me to pull up my pants. And that's it. The contrast did not last long and off I went. The good news so far is that all of the staff I've met has been quite friendly. Always good to have people willing to joke around with you when they are poking you with needles and such. Tomorrow I meet with the endocrinologist to review the CT Scan results.

Introduction

Welcome to my blog on my condition known as pheochromocytoma. The purpose of this is to chronical the process I am going through in diagnosing and dealing with this condition. This all started summer of 2004. I started having frequent episodes that I can best desribe as "adrenaline rushes." Usually this would be first thing in the morning but would also happen at times after having a heavy breakfast. The symptoms were a rush through the body particularly up the spinal cord, nausea, headaches, dizziness, and a general feeling of anxiety. One odd symptom - and I noticed this several times while riding on the bike - is that my heart rate would actually drop during these episodes. I originally visited Virginia Mason (Bellevue) to find out what was going on. No diagnosis was quickly uncovered. I had some basic neurological tests done as well as and EKG and everything seemed to check out in these areas. I also had some blood work done and there was nothing to indicate high blood sugar. After a couple of trips to the doctor they suggested this might be panic disorder and a possible treatment would be a drug like zoloft. I was a strong believer that this was a reaction to something chemical and not psychological and so I discounted that diagnosis and sought other opinions. I got a similar diagnosis from a second doctor (also at Virginia Mason). By September '04 the attacks had stopped and so I did not think much about it through the following year. But they reappeared last summer but in a different form. Rather than getting headaches as a result I would get more stomach/GI pain. Rather than first thing in the morning it would happen more at night and often would wake me a couple of hours after I had gone to bed. I started seeing a third doctor (not VM - private practioner) who thought this might be related to a reflux disorder. We did a barium swallow (you drink about a gallon of a liquid that has the consistency of an Orange Julius and they tilt you around on an x-ray bed to see how your insides look as you swallow the drink) which revealed no hiatal hernia (where the stomach protudes into the esophagus) or other serious reflux problem. There was a thought this might be related to the vagus nerve - which runs from your abdomon around the stomach, hearth, esophagus into the brain - in which its overstimulation might be causing the heart slowing and GI discomfort. I was prescribed Prilosec and beta blockers (this with the intent of regulating the heart) but neither had any effect. These diagnostics lasted from June through November with very little happening to curb the episodes. Through December not much happened - it was a busy time with Christmas season (I visited KS for a week) and when I returned I got terribly sick and was so for about three weeks. During that time I visited the VM clinic three times to see what I had and to get antibiotics. I saw the original doctor the first visit (just a flu - rest and it will pass) and a new doctor the 2nd/3rd visits (this is doctor #4 for those keeping track). During the third visit the doctor realized that I had high blood pressure the last fiew visits and noticed a marker in my blood that indicated high adrenaline levels. At this point she ordered a urinalysis to see if there were more adrenaline markers than just the blood test would show. I also had the pleasure of purchasing a personal blood pressure machine to do daily readings. Finally, I got my antibiotics which in 5 days kicked the hell out of whatever I had. So, after about 1 1/2 weeks I returned to the doctor to get my diagnosis and this is where we are in the tale. Indeed I had three (of four) markers in my urine that were highly elevated - 4-6x as much as would be considered normal. This pre-diagnosed the pheochromocytoma but it was up to getting a CT Scan to determine this for sure. So, we're setting up an appointment to get the CT done and to talk to an endocrinologist this week. The specialist will give the CT results and prescribe next steps.