Monday, May 25, 2009

Pills, pills and more pills

Well the first thing the doc's usually do with a pheo patient is attempt to control your bp. However in these cases often bp isn't really affected by bp meds. I actually read that sometimes these meds can actually make your bp go higher. Perfect.

I started on labetalol 1oo mg 2 x/day. Now I take double that 3 x/day, plus another drug called terazosin which none of the pharmacies or nurses at the hospital had really heard of and is often prescribed for elderly people to make them pee. Excellent. Thats 5 pills a day. Perfect. And they don't really seem to help my blood pressure. Great. Oh and the real kicker..The one on the far right was specially ordered as its technically an "experimental drug", costs $7.20 a pill and only comes in 100 tablet packages, and I have to take it 2x/ the math people..oh and its not covered under normal health insurance. I'm attempting to determine if there is someway to get this drug covered though as expensive drugs and no job = crap. I'll keep you posted.

So I'm currently up to a solid 7 pills a day. To sum up the difference in pills well the 2 on the left are beta blockers and the one on the right called phenoxybenzamine hydrochloride is an alpha blocker. These meds are a must, especially prior to surgery. Specifically the $800 one. Apparently 30 yrs ago they had no idea how to control ones hormones and the surgery would be rather complicated. Today the surgery is still complicated but they at least have these meds which help to block the effects of the tumour on bp..a must for surgery where your bp can react to the poking and prodding of the tumour and increased/decreased hormone/adreniline production during far too much info yes? I'v been doing alot of reading what can i say.

The Pheo Timeline

1 Year ago:
I think it was a year ago or so when I first started feeling 'weird'. This 'weird' feeling was like a tingling in my hands and the occassional pounding heart kinda thing. Being new to the pounding heart scene I decided to see a doctor, and ended up with a take home ecg and echocardio graph, both which showed I was healthy. I continued having these symptoms every so often, and continued to see different doctors for the next 6 months. Diagnosis = stressed out. Just chill out they said.

6 months ago:
I tried running for the first time in 7 or so years (don't judge me). After I got past the initial shock of "when did I get this out of shape" feeling, I began to get a really intense headache. I mean I've had the worst of worst hang over headaches and this absolutely destroyed any previous headache I'd ever had. Needless to say I stopped running. 2 weeks later I decided to try again only to end up with a similar result. These headaches only laster for 10 or so minutes and I really didn' think much of them. However I went to the doctor anyways. Again... Diagnosis = stressed out. Just deal with your issues I was told and chill the f out.

Around 4 months ago:
these headaches began to accompany the pounding heart feeling on a somewhat regular sometimes multiple times a day and often in the middle of the night. Back to the doctor I went. Back to the Diagnosis = stressed. I decided to see a counsillor to deal with my stress.

Around 2 months ago:
I met with my councillor just one time and was told to see a doctor at my school (I'm in Uni) to ensure that all was indeed good and that I was just stressed. Luckily..I say luckily because I could have continued on thinking I was just stressed all this visit to the doctor was following my last week of classes where my symptoms really began to peak. Discovery = abnormally high blood pressure. Apparently during the other visits to el doctorio my bp was fine. Result = a wknd in the hospital where they have no idea whats wrong with me where my bp continued to go up and down dramatically.

Around 1 month ago:
I was referred to a high bp specialist where I pissed in a can for 24 hrs. Result = a random phone call on a friday night leaving a voice mail telling me I had a tumour! No other information..just that I had a tumour and that I should go to the hospital. Apparently I wasn't as stressed as I thought...well at least not until now. 5 days in the hospital later they had confirmed that I had a "Pheo" and that it was indeed on my adrenal gland (where their normally found). After multiple meetings with the bp specialist, $800 worth of medication, 3 other bp medications, and random tests,I finally met with the surgeon and booked a date to have this puppy removed (June 11th).

I'm leaving out a bunch of other things (basically this process has been really confusing and rather inefficient) as I'm a little lazy. Had I started this back in the day I would have told about all my experiences..for now I'm going to focus on what is happening/going to happen.

Pheod Defined

Basically I'm writing this blog because A) I have Pheocromocytoma and I feel like being self indulgent and need a place to vent and B) I have way to much time on my hands. I'm also going to post information and links regarding "Pheo's" as their called in the medical world, as I come across info during my daily obsessive compulsive internet searches. I'm may throw in random posts such as how I'm spending my oh so productive days, which I'm sure will entertain seeing as how I spend nearly 4hrs of each day sitting in the park staring blankly (hence why I have the time to write).

So what is a pheocromocytoma? Well rather than explain it myself which I still can't do very well here's some links for a little background info on what they are:

Beod Defined

Well my nickname is Beod as most of you know... I won't trouble you with the story behind the name but I will say that it has nothing to do with body odour. BEEEOODDD!!