Yippee!!

The Jackson-Pratt drainage tube is out!! I'm so excited!

While the ERCP on Monday was less than enjoyable, it was a success :D My fluid output dropped to less than 10 ml per 24 hour period and it wasn't bile anymore, but the usual fluid one has inside I guess.

I saw the surgeon this afternoon and he pulled the JP out. Holy crap that's a strange feeling - similar to when someone pulls on your finger and it is THIS CLOSE to popping... that feeling. Like someone was tugging on something inside me. So bizarre. And it hurt! He said that I started growing over the end of it (it's a mesh that fans out to capture the fluid) which is why it hurt. YUCK. He then bandaged me with gauze and I asked if he should be putting steritape over the hole and he said no, it would close on its own. Ohhhhhhkayyyyyy....

He then asked if I wanted to keep the JP - I said no thanks, and he said "as a momento?", and I said "no, I'm good thanks". I really see no reason I'd want that piece of hardware around. Ewww!

Barring any fever or major pain, I don't see him again for two weeks for my final visit. I'm so excited! But not as much as sleeping on my side tonight. I've been in one position for 4 weeks (on my back, sitting up) because rolling over/twisting made the tube move inside and it hurt like a mofo!

Finally, there's an end in sight! Yippee!!

The Procedure

Well I made it through the ERCP.

I have no idea what happened, but when I got to the hospital at noon I had a sudden excruciating pain in my side. Sitting down wasn't an option. Oh well, I guess it's a good thing I was in the hospital! Truth be told, I think it was the drive there that did it. We have the luxury of living off one of the twenty worst roads in Ontario (last year we were second!). At least the road is undergoing re-construction, but that won't be complete until 2010. Anyway, there is a longer way around with a smoother road, but I was feeling so much better yesterday I suggested we take the usual road. Sigh... Thank goodness there's a turn to link up with the other road about 5 minutes in, I thought my insides were being milkshaked. Everything was vibrating! I think all the jiggling inside moved my tube causing the pain!

Anyway they ushered me right in (apparently I was supposed to be there earlier, though the appt card and the email from the Gastroenterologist both said to be there at noon) and I was soooo sore. They hooked up the IV, asked me some questions, had me sign my life away, and then the Doctor came by. He asked if I had a chance to see the cardiologist (no), but I introduced him to my new beta blockers. Told him it was so bizarre, I haven't felt my heart beat since Friday morning. He said "I think it's still working though". I really like him, he's a lot of fun. But it is really strange, I've felt my heart beat my whole life and now there's nothing. Something's missing! He went over the procedure again, and said he was going to put a stent in to keep the valve to my pancreas open, unless there was a stone there (which would have kept the valve open yet blocked for quite some time!), at which point he would take the stone out, drop it in my stomach to be pooped out later and cut the valve open as planned). This is called a sphincterectomy. Trust me, the first time it was mentioned I got a little nervous thinking "what the heck are they removing THAT for?!?" LOL.

The nurses wheeled me into x-ray (because the ERCP requires x-ray for the whole test), got me positioned (contortion anyone?) and sprayed my throat 10 times. YUCK. Such a strange sensation! You can swallow, but you feel like you can't.

The doctor came in and dimmed the lights. I said 'oooh mood lighting' and he replied 'of course! sadly, we don't have music today, but Gail here has agreed to sing'. He then popped the mouth guard in my mouth (the one with the hole in the centre for the tube) and hit me with some IV sedatives because I was out. Next thing I knew I was gagging. They told me to breathe (which helped), but then I gagged again, and again. Of course gagging when you're out of it is just 'there' and not horrible, you forget pretty quickly! Then I heard myself make a 'uhngh' sound and I was told they were filling my stomach with air, then I was out again, heard another 'uhngh' and I was told they were putting the balloon in (and I remember thinking - oh so they found stones!), then another 'uhngh' and they told me that they were cutting the valve. Next thing I remember was gagging again and they said they were done. And I went back to sleep.

I have no recollection of being wheeled back into the endoscopy area and then suddenly I was wide awake and feeling really bloated. The nurse asked me if I wanted a drink - I chose water. 5 mins later I was allowed to get dressed and they called Steve to pick me up. My stomach was still really sore from before the appt, and still is this morning, but not to the same degree. I saw the Gastroenterologist before leaving, he told me the procedure went very well (and fast! only 20 mins!), that I did great, the highest my heart rate went was 100 bpm (because I gagged), he didn't have to put the stent in because I had two stones, one or both blocking the pancreatic duct. If they weren't both there I have no idea which other duct it was blocking. I didn't think to ask. At least without the stent he won't have to go back in in 6 weeks to take it out!

I'm to stick to the as fat-free as possible diet to try to keep the bile production low, and the bile should stop coming out from where my gallbladder was in a few days. I have to call my surgeon today to book an appt with him to hopefully have the tube and Jackson-Pratt removed. I have no idea what the next step is if this doesn't fix the problem, but they seem to be very hopeful that this will fix me up. Fingers crossed! I've been plagued with severe itching in my torso, and when really bad everywhere, which is from too much bile in the bloodstream. I can't wait for this to go away! My back is really scratched up!

All in all, I don't remember much at all. If the procedure took 20 mins, I probably only remember 1 min total... everything else is gone. Thank goodness! Today I have a 'lump in the throat' feeling, but that's it. Would I have the test again? Only if I had to. Would I be nervous? Yup, because that's what I do ;).

They're Gone!

So evil Lu was keeping me company last night while I was trying to get caught up on some blogs... not sure what he did, but one step across the laptop and he marked everything in bloglines as read.

I've gone through and added everything published in the last month back in and marked them as read, and will try to get caught up this week.

I'm sad to miss everything, but I guess Lu made my life much easier, since I probably would never get fully caught up anyway.

Bah!

I'm still collecting far too much bile, even had some record days this week. Tuesday/Wednesday morning the fluid slowed a lot (to my lowest collection in 24 hours since this began) and it was mostly blood not bile. I hadn't seen blood since I was in the hospital 3 weeks ago. I was hopeful! Then I woke at 4:30 this morning and my flask was 3/4 full again, to make it my second highest collection day. Sigh. Today again it's low and more blood than bile. Fingers crossed that it's going to keep diminishing!

I spoke with my surgeon today and he wants to proceed with the ERCP on Monday. I can't fight it, overall I'm leaking more than I had in the first 2 weeks! He said not to worry about the blood (I wasn't). Unfortunately my cardiologist can't see me for a couple of weeks, and the surgeon doesn't want to postpone the ERCP any further. Grrrrr. The interim solution is to put me on beta blockers until I can get to see cardiologist and to the arrhythmia clinic at the Heart Institute to review the original diagnosis (Wenckebach). Who knows it may have progressed to a more serious heart block. We'll know eventually. Sigh.

I felt lousy when I was on BB back in 2003 after my first SVT. My BP is low-normal, so naturally I had zero energy when on BBs. I also gained a ton of weight in just 3 months. Sigh. Running was horrible if next to impossible. I was dragging.

In an attempt to keep positive, I'm relieved to know that the chances of my going into SVT again on Monday when they sedate me for the ERCP are much smaller. If successful, the ERCP should bring the bile leak to an end, and by end of next week the Jackson-Pratt can come out, and I'll be much more comfortable and able to recover a little faster. It should help my moods some too! I'm a little bummed to say the least.

Once I'm recovered I'm going to fight like mad to see the cardiologist and get off the meds. I did it once, I can do it again!

10 more days

My appt with the surgeon yesterday went well, I guess.

Since I'm still collecting bile from the tube, I will have to have the ERCP (warning, icky pictures in this wiki page!), but thankfully the gastro-enterologist scheduled to do it is away next week, so I'm not scheduled until the 25th. In the interim, I still have the Jackson-Pratt in, and will continue to monitor the quantity of bile collected. They will also try to get me in to see my cardiologist before the procedure, because they don't want to risk my going into SVT again.

I misunderstood what the surgeon said last week, he will not have to go back in to clamp off the gallbladder duct. Apparently the infection/inflammation was so severe that my duodenum had fused to my gallbladder, so he was only able to remove 95% of it, and not get to the duct. Going any closer risked perforating the duodenum, which we don't want. There is a possibility that what's left of my gallbladder will shrivel up and close on it's own, so I'm bound to a low fat diet still, to try to keep as little bile being produced as possible, so it will dry up. If it doesn't, I have to have the ERCP on the 25th to speed things up. I am REALLY not looking forward to this procedure, not only because the thought of it is disgusting to me and as stupid as it sounds, terrifies me (I don't do barf or gagging), but mostly because of the risk of pancreatitis (5%). The plan for the ERCP is to enlarge the little valve to the pancreas to try to create an easier channel for the bile to travel through, to allow the gallbladder to close up. If needed they will also put in a stent, which is typically removed 6 weeks later by ERCP (they lasso it and pull it out... oh yeah, I really want that!).

I'm doing everything I can to try to settle this down, resting, low fat eating, but the bile keeps draining :( Some days there's very little, and others it's double or triple. I'm really really nervous that I'll have further complications if they have to do the ERCP, since everything has gone wrong (at least in my opinion) so far. I know these things happen, but I want to get better so badly! I want to run again :(. Showering still takes so much out of me that I need to rest afterwards. Sigh.

Please send positive vibes!

The staples are out!

and that's the good news. It didn't hurt at all, a tiny bit of tugging. I was expecting much worse.

Now the not so good.

The Jackson-Pratt drainage tube is in for another week. The surgeon said that he had some concerns that it was still collecting bile, and called for his colleague to do some test. Turns out the test involves a camera down my throat. I said "no we don't need to do that". What saved me is his colleague didn't respond to the page in time. If in a week I'm still oozing as much, they will have to do it :(

I asked where the bile was coming from since my gallbladder (which in tribute to my daughter the boob is known as Gablo around the house) is gone. Apparently they normally clamp off where the gallbladder was, but in my case couldn't because the duodenum was positioned in the way and he would have had to perforate it to get to it, which he did not want to do. If I keep oozing, he'll have to go back in and fix it, though he said it's a simple procedure. I was feeling really rotten and weak yesterday, and should have asked if it was easy why didn't they do it? Maybe they go in a different way to get to it, like through my eye.

He asked if I saw the cardiologist while in hospital, which I hadn't. He paged him. He then said that since I had to have cardioversion while on the table it was important that we follow up. I was stunned, I asked if I had to have cardioversion in the OR as well as in recovery and he said yes, that the minute he started working on me, the anasthesiologist was frantically trying to keep my heart under control, because it was all over the place. The IV they gave me which should have settled it made it worse so they had to bring out the paddles. My HR was over 230 bpm. He said that they were both very busy trying to finish it up and get me to recovery.

I'm so bummed, but need to focus on healing, and hopefully my body will take care of what needs to be done and he won't have to go back in.

I'm in less pain now, though the referred pain in my shoulders returned twice, yesterday and this morning at 6AM. So strange. I'm also waking up every night at 3:18. I know everyone goes through periods like that, I would just love to know why it happens!

Everything went wrong

Well, my gallbladder's out.

Got to the hospital on Thursday morning for laparoscopic gallbladder surgery. 45 min operation. If only. I was very nervous in the waiting room, chatting with the other patients going for surgery as well. Then it was my turn, walked to a gurney, climbed on, they raise the rail, give me booties, a shower cap and a blanket. Surgeon and Anesthesiologist should come chat with me in a few minutes. The Surgeon came by, told me he was ahead of schedule, and I should be in recovery by 12:30, and out a couple of hours later. The Anesthesiologist came over and blinded me with his perfect white teeth, asked about my health, any colds, etc. I told him that I had Wenckebach, he said he saw that, but my EKG looked normal. It was a good day then. He asked what happens, and I told him that I drop beats, and sometimes go very speedy, and if over 150 for over 30 mins need to get to emerg for an IV drip. He said ok, see you in a bit.

I was wheeled into the OR, and now I understand why they call it an operating theatre! It's HUGE!! Yes, this is my first ever surgery, other than wisdom teeth, which while was under general anasthetic, was in the oral surgeon's office. Anyway, I was nervous, but the IV line was put in, barely felt it, I was told I might get a little dizzy and to close my eyes if it bothered me, and I was gone.

I woke up, and the nurse said "Una it's ok. I said "did they do it laparoscopally?" she said "I'm sorry sweetie, they had to do it the old way". I said "damn". Then she said "Una, do you know what a cardioversion is?" and I said "Damn". She said "we have to get your heart rate down, you're up at 200 bpm. I closed my eyes (maybe they doped me again, I don't know), and the next thing I knew I was bouncing off the table and letting out a big "UNGHHHH". OW. The cardioversion didn't hurt, the freaken surgery area hurt, although a nurse was holding a blanket over it. The nurse then said "great job Una, your heart rate is coming down. You're at 135". The Anesthesiologist came to see me and said "well you certainly know how to make things exciting! Thanks for being upfront and telling us everything about your condition, because it's exactly what happened". I grunted. I was thinking put those bright teeth away. The surgeon came over and said "we tried to do it laparoscopically, but when we got in there, your organs were all gummed together so we had to do the open procedure." Then he asked about my doctor and who my cardiologist was. I couldn't remember. They found out though, and my records did show exactly what I told them.

Because they don't have telemetry in the surgery ward, I got the luxury of ICU for the night. I learned to pee in a bedpan! Boy oh boy, we girls are trained to use the porcelain! It took sooooo much focus, and I really really had to go, stupid saline IV (we nicknamed it Ivan). On Friday I was finally allowed to sit up, had a sponge bath (I was covered in iodine), discovered I have a drain hanging out of me (which Steve called a gas line), and was allowed to go to a real bathroom. Because of the foot and half of snow we had on Thursday/Friday, there were no private or semi-private rooms, so I was put in a ward, with three elderly ladies. Poor things, they were all moaning and crying. Thank god for my iPod. I didn't sleep the night before, and wouldn't get any sleep this night either because the poor lady next to me barfed all night. So I planned my escape:

1. I have a blood pressure machine and have been monitoring for 6 years. I can do this at home.
2. I don't have a fever, and do have a thermometer at home.
3. I hadn't taken any of the morphine-on-demand since Friday morning, when she had me sit up. I was on Tylenol only. I have this at home.
4. I was up and walking when they took me off the IV.
5. 'Processing' was working fine.
6. I was tolerating my food fine, although it was still only fluids and jello.
7. I was already shown how to empty my goo flask, and how to clean the dressing if needed.

My nurses agreed, talked to my surgeon and he said if I was able to tolerate lunch of solids, they'd let me go. I was originally supposed to be out Sunday or today. They brought me macaroni and cheese. I haven't eaten since Wed, and they bring me mac and cheese??? I told KT and Steve to eat it and we'd go. They refused. Then Steve took three quick bites (love him). Then the nurse came in and I asked for toast. An hour later I got my toast, gulped it down, waited another hour, and they took the IV line and let me go. Wooooo!

Since then the radiant pain has been HORRIBLE. I feel like my shoulders are about to explode. Heating pads and Percocet help, but man alive, it's almost as painful as the gallbladder attack! I haven't slept more than 2 hours a night yet, nor have I slept during the day. I had my last radiant pain this morning, and I'm really really hoping tonight's the night I sleep!

What an adventure. Now to recover. Staples (25 or so), laparoscopic dressings and the drain come out on Friday I hope.

4-6 weeks off work. Sigh.