messtafarian
Member
- Joined
- Aug 18, 2013
- Messages
- 814
last Sunday I went to the er in the most excruciating pain imaginable. It only took them about three hours to have me admitted and scheduled for emergency gallbladder surgery. They waited a day and kept me fasting, on a drip and dilaudid, while they did something called an MRCP -- don't know what it stands for but it is an indepth mri of my abdomen which told them there was no doubt at all the thing had to come out. I was really too sick to care what they did or said, but the next day they whisked me into the theatre and did a laparascopic removal. It was really bad, containing two jet black stones both about 5 cm in diameter and the gallbladder itself had swelled to 15 cm, blackening and hemorrhagic.
I haven't had a brilliant recovery. The surgeon said he was about to open me up because the thing was huge but in the end he wrested it out of my bellybutton leaving me in a world of pain.
But afterwards the report from the MRCP came over on my hospital account. On the report it noted that my gallbladder was massive and my bile duct was dilated, my liver was swollen but fairly normal except for some fatty infiltration. Lo and behold I also have something called a congenital bochdalek hernia. But also....there was a 2 cm adenoma on my right adrenal gland.
Now...gallbladder aside, I know this is the source of everything that's been bothering me for the past couple years. The hot flashes, the GERD, the shaking, limb/girdle weakness, hypokalemia, sudden very high blood pressure, intractable iron deficiency, all of it. I absolutely know it but since that day, a week ago, I have not been contacted about that tumor and I know its going to be a big deal to convince them to take it out. The reason I know that is because the growth is considered "small" and the only oddity on my labs is an overall high cortisol count of 85 U -- not high enough yet to be considered "Cushing's." It's going to be a big problem and in the meantime,I have to do everything I can to stop the cortisol from eating me.
what I have on hand is cypro, inderal, lysine, most vitamins, a multiple. My digestion is shot and I have to be careful with the fat-solubles because only a little of them will go into me and be delivered. I've just come off of MASSIVE IV antiobiotics and have no gut flora ( but no c-diff either as far as I know). I'm barely eating since nothing is really going down -- that could go on for a couple months. My butter experiment is probably out of the question from now on. My liver is bruised and showing signs of mild damage from infection and the operation. Assay of Amylase was OK but Lipase was pretty low.
So I've got bromocriptine, periactin and clonidine on order. I don't think it's a classic "pheo" since the bloodwork they did a couple months ago only showed high dopamine on the catecholamine panel and normal metanephrines. To me, given my symptoms, it's an active cortisol-producing adenoma but I know it's going to take a year or more to get any oncologist to get it out of me.
I need all cortisol/ACTH reducing strategies going to work now so I don't end up dead on the way to surgery for this thing. All suggestions accepted.
I haven't had a brilliant recovery. The surgeon said he was about to open me up because the thing was huge but in the end he wrested it out of my bellybutton leaving me in a world of pain.
But afterwards the report from the MRCP came over on my hospital account. On the report it noted that my gallbladder was massive and my bile duct was dilated, my liver was swollen but fairly normal except for some fatty infiltration. Lo and behold I also have something called a congenital bochdalek hernia. But also....there was a 2 cm adenoma on my right adrenal gland.
Now...gallbladder aside, I know this is the source of everything that's been bothering me for the past couple years. The hot flashes, the GERD, the shaking, limb/girdle weakness, hypokalemia, sudden very high blood pressure, intractable iron deficiency, all of it. I absolutely know it but since that day, a week ago, I have not been contacted about that tumor and I know its going to be a big deal to convince them to take it out. The reason I know that is because the growth is considered "small" and the only oddity on my labs is an overall high cortisol count of 85 U -- not high enough yet to be considered "Cushing's." It's going to be a big problem and in the meantime,I have to do everything I can to stop the cortisol from eating me.
what I have on hand is cypro, inderal, lysine, most vitamins, a multiple. My digestion is shot and I have to be careful with the fat-solubles because only a little of them will go into me and be delivered. I've just come off of MASSIVE IV antiobiotics and have no gut flora ( but no c-diff either as far as I know). I'm barely eating since nothing is really going down -- that could go on for a couple months. My butter experiment is probably out of the question from now on. My liver is bruised and showing signs of mild damage from infection and the operation. Assay of Amylase was OK but Lipase was pretty low.
So I've got bromocriptine, periactin and clonidine on order. I don't think it's a classic "pheo" since the bloodwork they did a couple months ago only showed high dopamine on the catecholamine panel and normal metanephrines. To me, given my symptoms, it's an active cortisol-producing adenoma but I know it's going to take a year or more to get any oncologist to get it out of me.
I need all cortisol/ACTH reducing strategies going to work now so I don't end up dead on the way to surgery for this thing. All suggestions accepted.