the "Inn" at the hospital - talk about the WOW factor. Small doesn't even cover it!
It was small, but cozy and convenient for all I had to get done. On Monday, I had a picc line put in my arm and then had to get blood taken every 4 hrs for 32 hrs (through Wed morning at 8am). I also had to pee in a jug for 24 hrs (a 24 hr UFC). I also took two salivary tests at midnight (one on Monday and one on Tuesday). I also had a stim test done via blood on Tuesday morning at 8am. (I got a baseline blood test, then a drug injection, then more blood taken a half hr later.) Wednesday was the IPSS surgery, which went a WHOLE heck of a lot better than the first one did - even with only a MILD sedative!! Thursday I had to take dexamethasone every 6 hrs and Friday they did another blood test at 10am, then injected a CRH drug and took my blood every 15 minutes afterwards. That was a crazy test!The picc line they put in went amazingly well. I was quite worried about it, but
the nurse that did it was a pro and all I felt was the lidocaine that numbed my arm. It was uncomfortable, but I think that was mostly the tape around it. And it was sooo itchy! But otherwise it was quite a convenience having it in for all the blood I had taken! It was even used for my IPSS surgery on Wednesday for my IV! So no extra needle sticks there either! BONUS!As it turns out, my midnight and 4am blood results were off the charts. The highest ACTH levels I got at home (during the day) was 80, but at Camp Cushie my highest during the day was 111. At night it was 348!! My cortisol levels were on the high end of normal during the day and totally elevated overnight - ranging from 17-28 (normal range being below 5!). I got the 28 cortisol level with the 348 ACTH level. So I don't know WHAT was going on, but wow. My two urine tests were quite different in result. One was 33 and the other 90. So one was 3 pts above normal range and the other was 3 TIMES normal range! Incredible! The salivary test results haven't come back yet, so I'm not sure how I did with those. The ones at home always came back normal.
As far as the IPSS surgery, I'm glad I had it done again. I was really worried about only having a mild sedative and being awake, but I'm telling you it was soooo much better than full anesthesia!! Let me back track... I got to the same day surgery suite at 9am to check in. Came back, got dressed and was hooked up to an IV. I became the "problem patient" when I asked for a catheter (foley) after they told me one wouldn't be used. I didn't get that tho! They are hooking me up to an IV and I'll be somewhat sedated and they are telling me I won't pee on myself?? Or that I can use a bed pan? I don't think so. So I requested a cath be put in. They were shocked. But when I was wheeled down to the OR, they were HAPPY it was there! No mess for them to clean up! ;)
In the OR was a little weird. I was shaking (cold and nervous). They put this big hotdog looking thing down the middle of me to give me a tad bit of modesty in front of all the docs/nurses. Then they gave me some strong dose of ativan or something and I totally relaxed. From what I was told I kept thanking the drug nurse Brianna. LOL Then they must've sedated me, cuz I don't remember much after that. I remember a point where my one ear hurt and I sort of "woke up" but I wasn't really awake. It was weird. I remember them telling me to relax and it'll go away and I'll get more drugs. I guess it did go away until they did the other side. But it was gone as quick as it came. Next thing I remember I'm back in my room. Supposedly telling the male nurse that was attending to me that I was Rachel Ray. LOL I am NOT a Rachel Ray fan, but I know hubby is and I wanted to be her for him. I dunno. In any case, I did come out of it fairly quickly. And without the dry mouth, nausea or anything! It was awesome. I did feel the incision site more than last time. But was told that was to be expected.
While Dr. L is good at not blaming anyone, since he can't say whether the first IPSS was done wrong or my tumor was just "off" but this time it was totally on, with the left side numbers being upwards of 7500!! He said it's still not totally localized tho, as my right side was still around 2300!!! But between that and my blood numbers, he was absolutely sure I had Cushings. After going through a year of testing, one week gave me the full diagnosis I needed. But here's the interesting part!!!
On Friday after the dex test (which was totally crazy itself) around 11am, Dr. L called the nurses and told them not to take out my picc line just yet until he had a chance to talk to me!! 45 minutes later Dr. L called me back and spoke to me "in private" that both him and Dr. M (the neurosurgeon) were impressed with all my numbers and wanted to know if I could stick around another week. He wanted me to do another urine test (since he hadn't gotten results from the ones I'd done early in the week yet) so he could do a quick turn around and possible get me into a clinical drug study. I found the link to it too: Cushings Disease Clinical Drug Trial. He said I fit the profile perfectly and would like to talk more about it. He wanted to find out if I could rearrange my flight and stick around. I told him I had to talk to my husband etc. So he said his assistant would call back by 3pm and we'd decide what to do.
Talk about lot of information though!! My mind was whirling!! Before the last test on Friday we had just checked out of the Cherry Hill Inn, and on our way to the Silver Cloud Hotel (bigger rooms!). I figured we could wait over there and I could make my calls. We left Swedish at almost 1pm. Well not 10 minutes after we arrived at the Silver Cloud, Dr. L's assistant called me to say she wanted me back at Swedish because now Dr. M wanted to talk with me asap!!
So we RUSHED back over to Swedish and had not only a conversation with Dr. M, but a talk with Dr. L too!! One was obviously for doing the surgery and a possible quick cure and the other was for the drug and it's permanent help. Thankfully my mom was there and I had my husband on speaker phone on my cell. It was over an hour of information!! What we ultimately decided was that we didn't feel comfortable doing the drug study. And that I want to try the surgery first. With surgery, there's a chance for a cure. With the drug, they don't cure it - they just shut down the tumor and all the symptoms. But the tumor doesn't go away. If you stop taking the drug, the symptoms come back. Also, I'd have to go to Seattle 1-2 times a MONTH for a YEAR (and that's 3 days at that too!)!!! The pharmaceutical company would pay for it, but they wouldn't pay for my hubby to take time off to care for the kids etc. So it's a no go.
So Dr. M ordered another MRI (which they didn't originally want to do since I just did one less than 6 months ago and they like to wait a year usually - but Dr. M thought maybe with my tumor being "hot" this week something might show up. Ironically enough my MRI came back showing a 2-3mm tumor on the left side - consistant with the IPSS surgery!). I didn't get out of the hospital til just before 7pm!!!
It was just crazy. We decided to wait for the rest of the test results (salivaries & UFC's) and then decide on a surgery date. The surgeon was eager to get right to it and remove the tumor already. hehe! Had I told him I could stay another week, he probably would've done it then and there!! But I told him I couldn't do it now and planned to do it at the end of summer. This way the kids would be back in school during my recovery time. He said that was fine. I'm still debating a surgery date. While waiting for surgery til the end of the summer is ideal, dealing with all these symptoms isn't.
The recovery from this surgery is long and hard. It's basically like weaning a crack addict. Difference is that my body is making it's own drugs, but once they cut that tumor that's making the drugs OUT - I'll be in horrible withdrawl. A HUGE withdrawl within 24 hrs after the surgery is good, because it shows they got the whole tumor and I could be cured. But in either case, they'll have to give me the steroids orally and then I'll have to slowly wean off of them myself over time. Adrenal insufficiency (AI) is one of the problems if I don't take enough of the steroids and I do too much during the day. My body starts to shut down and I could ultimately die in a short amount of time. I will actually have to get a medical bracelet and carry a high dose steriod injection with me at all times until I'm weaned off them. (Kind of like Max's epipen.) It's a very scary process.
So it's basically my own rehabilitation. I don't want to be out of it for the kids bday, or before going to Disney. I basically am fine now, but I won't be after the surgery for quite some time. (They say recovery can be anywhere from 6 months to 2 years!) So if we do decide to go ahead with it, it will be at the soonest after we get back from Disney in May. That's where we're at now.
No comments:
Post a Comment