11 weeks post surgery

[Guest guest]

Hi all,

Sorry for not writing sooner but I've still been diligently reading

everyone's posts with much interest but have been " lazy " with posting

my own story.

I just passed the 11 week mark since my left adrenalectomy which was

performed in Halifax, NS, Canada. From a Conn's perspective, I think

I'm feeling great. My BP has returned to normal usually somewhere

between 110/74 and 120/80 depending on where I have it taken. I

haven't

had a migraine since December which is unheard of for me. My

potassium

levels have also returned to normal. Some history on me. I am a 28

year old female who was diagnosed with Conn's in September

2007,presenting with extremely low potassium, extremely high BP,

muscle

weakness, debilitating migraines and anxiousness. I was only on

Labetolol, a fluid pill who's name escapes me at the moment and

potassium supplements pre-surgery. Like some of you, I also did not

have an AVS done. My doctor said it was unnecessary as he felt the CT

revealed the 2 cm tumor on the left gland and the right adrenal did

not

look enlarged.

While I'm feeling ok now, the road traveled wasn't as smooth as it

sounds. I had the surgery on Dec 18th and was told it was a success.

The evening of the surgery I was asked to stand up and walk around

and

d it was excrutiating. Since I'd never had surgery before I did not

now if this was normal or not so I didn't complain probably as much

as

I should have. My BP was really low and I had a nurse at my side the

whole night b/c I was shaking excessively, having cold sweats and my

abdomen was bruised beyond recongnition and swollen. You'd think all

those symptoms would have prompted a careful second look at me but

that

didn't seem to be the case. I was told my platelets were very low and

this was not uncommon after surgery and that they'd monitor me every

couple of hours which they did. I had so many needle marks I looked

like a drug user. My arms from finger tips to shoulder on both sides

also turned black and blue. All day on the 19th I continued to

detoriorate. Platelets dropped all day long, abdomen got worse, I

passed out during a " walk " I was told I should have been able to do

no

problem. Finally at 8pm that night, and thanks to a bossy nurse who

wouldn't take no for an answer, the surgeon came back to see me

(previosly his senior residents were keeping an " eye " on me. He took

one look at me from the doorway and rushed me to the CT scan. 30 mins

later they were running (and I mean literally running) me back to the

OR. My husband and I were terrified. Everyone looked panicked and

scared and they were running around like mad people hooking me up for

a

blood transfusion and knocking me out. The second surgery was about

3.5

hours long I was told...double the first one.

Turns out I had massive internal bleeding from the surgery. One of

the

adrenal arteries didn't seal off properly so I was bleeding

internally

for over 24 hours post initial surgery. The incisions also didn't

stop

bleeding apparently. My surgeon said he's done hundreds of these

surgeries (he's been published on the topic of adrendal surgeries for

Conn's, Cushings, etc...Dr. Jaap Bonjer)

before and has never had to perform a second surgery due to this type

of bleeding. He pretty much said this had to be some pre-existing

condition on my part rather than surgical error on his team's part. I

would have thought I would have known if I had a clotting disorder my

whole life before this....but hey, what do I know? ARGH. I ended up

in

the hospital for about a week and had 5 units of blood pumped into me

during the second surgery. The nurses told me I was lucky to be

alive...they weren't sure I was going to make it. SCARY.

Post surgery they've been running lots of blood tests. My platelets

continue to be low (pre-surgery they were within normal ranges) and

I've become very anemic. The only drugs I'm on now are iron

supplements

and synthroid for a pre-existing thyroid problem. For weeks after the

surgery I was feeling faint and naucous all the time. Those symptoms

appear to be going away somewhat but not entirely. The pathology

report

confirmed that the tumor was Conn's. I'm going to see a hemotologist

at

the end of the month to rule out an auto-immune problem of some sort.

Has anyone else had this happen? I seem to have changed one set of

problems for another at this point although I'm much happier with

these

problems than Conn's. My quality of life has improved 95% and I'm

much

more calm and happy than I've been in years. I definitely don't feel

as

anxious as I used to and I'm not going to the bathroom 5-6 times a

night anymore either so the extra sleep is great!

I'll keep you posted on any new developments but I wanted to share my

story since I've found this group to be so supportive and inspiring.

I

wish you all continued health and happiness in 2008.

~Terri