Update

Yesterday's ERCP (an endoscopic procedure) went well. When I had the one on November 3, 2009, they overdid it with the anesthesia. My dad thinks that perhaps they did not take into account that I was also on a pretty healthy dosage of morphine at the time. This time, I was not on any heavy duty painkillers, and I would not let them give me any. They mentioned another possibility, but since I am allergic to non-steroidal anti-inflammatory drugs (ibuprofen, aspirin, etc.), they could not do that. Either way, I am glad I did not let them give me narcotics, because I came out from under the anesthesia just fine.

Before going under anesthesia, I did talk with my GI doctor briefly. Apparently this remaining pseudocyst is not resolving, because there is a leak in the pancreatic duct. I did ask him why the radiologist needed to talk with him so urgently, and it turns out he was just wanting an update.

I did not talk with my GI doctor after the ERCP, but he did talk to my dad. It is my understanding that I have made a lot of progress in the last six weeks. They replaced the stent in the pancreatic duct, and hopefully things will heal up this time.

It sounds like I will have a follow up with the radiologist next week. My guess is they will inject dye into the drain catheter again (better that than into my veins).

And the Other Shoe Drops

When I had my last CT scan on December 2, 2009, the radiologist who I saw that day indicated he wanted to do another one early the next week. However, for whatever reason, that did not happen. I did end up getting a lower dosage of my pain meds so I could start tapering off them, and when I went to my GI doctor's office to pick up the prescription, they set up an appointment for Wednesday, December 16, 2009.

When I saw the doctor, he told me my surgery may end up being sooner than later, and it might not just be my gallbladder that is removed. He said that they may have to remove the distal portion of my pancreas. The first thing that came to mind for me was whether or not that meant I would end up needing insulin, but he told me a person only needs part of their pancreas to regulate blood sugar.

He did a really good job of explaining stuff, but I still do not quite understand it all. The remaining pseudocyst is apparently communicating with the duodenum, which is why the drainage out of it has looked bilious. There may also be a blockage contributing to the problem. I know he placed a stent in the pancreatic duct during the last ERCP (an endoscopic procedure). If I understood correctly, it was because the duct was damaged due to the pancreatitis. However, there may be a chance the duct is not sealing up right, and that could also be causing some issues. He did indicate he wanted to do another one, so that has been scheduled for this upcoming week before Christmas (trying to get as much done before the end of the year, because my health insurance deductible and co-insurance start over on January 1). He also mentioned that even though the surgeon did not want to do surgery until the last psuedocyst resolved, he may have to go ahead and do surgery and rig it so it drained through the digestive system.

I have also been having some issues with the insertion point for the remaining drain, so I called the nurse practitioner I have dealing with. She indicated she would call in a prescription for something I could use and that she would leave a new drain bag at reception in radiology. Then she mentioned that the radiologist needed to talk with my GI doctor about something. She said something about how they probably would not schedule any procedures next week, so I told her that I had an ERCP scheduled. She indicated that the radiologist she worked for would need to talk to my GI doctor that afternoon. So, I am not sure what else is going on yet, but apparently something is.

Waiting for the Other Shoe to Drop

I know I have been really quiet lately, but the road to recovery has had a lot of obstacles. I had a CT scan on October 26, 2009 which ended up showing that the pancreatic psuedocysts they had discovered on the previous CT scan were evolving. Then I ended up going back to the ER the next morning (October 27, 2009). I felt horrible, was in pain, was throwing up, and had chills. Turns out I was reacting to abruptly stopping my pain meds. Apparently it did not occur to the hospitalist who had discharged me on October 5 that I needed to gradually reduce the dosage of pain meds I was on.

On November 3, 2009, they did the endoscopic procedure that they had tried to do previously. This is when I learned about the pseudocysts evolving and found out one was invading my liver.

They overdid it with the anesthesia. Prior to this, I had had anesthesia on four different occasions. The first time, I was not able to breathe when I came out from under the anesthesia. The second time, it was even worse. The other two times, I had a great nurse anesthetist (I specifically requested him for the second of those two procedures), and I had no problem coming out from the anesthesia. This time I did not have the problems breathing like I had the first two times. However, I felt too sedated to breathe, and it took a very conscious effort to make sure I did breathe. I also tried going to work the next day, but I was unable to function and ended up having my dad come get me after a couple of hours. My boss told me to stay home the next day, which I did. Then I ended up having a couple of drains put in on November 6, 2009.

The drains were put in by a radiologist under a sedative and local anesthetic. They did a CT scan without the dye and contrast to see the pseudocysts and figure out where to place the drains. They put one in one of the pseudocysts on my pancreas and the other was put into the one that was invading my liver.

On Veteran's Day (November 11, 2009), the surgeon informed me they could not do my gallbladder removal (scheduled for November 19, 2009) at this point, because it could kill me. He did not offer any other explanation, and frankly I was too shocked to ask. I called my GI doctor's office the next day, and they contacted the surgeon. He told them he was worried about the pseudocysts rupturing and causing peritonitis. I have had peritonitis, and frankly, pancreatitis hurts more.

Two days later (November 13, 2009), I was in for another CT scan. I had been running a fever of 102 according to my thermometer, and I was told to call if that happened. One good thing that came out of it was that they discovered the psuedocyst on the liver had resolved, so they removed the drain.

Later that night, I felt really sick and texted my stepsister. She is a nurse and her partner is a professor of nursing. My stepsister decided to come over and check my vitals and brought her partner with her. I also called my dad as a precautionary measure. I had a fever, but we determined my thermometer was not giving accurate readings, so we do not know how high it was.

I ended up going to the ER, and this time I got in right away. They decided to admit me for pain management and bowell rest, and then they discovered I had an elevated white count, so the hospitalist who took my case ordered high powered antibiotics.

Low and behold, I ended up on the same floor I had been on during the last week and a half of my previous hospital stay. At least I was not in the same room (which it turned out was right under where the helicopters landed--okay so there was an empty floor between that floor and the roof, but it did not really do much to muffle the noise).

I have to admit, I was not quite as easy going this time. I was frustrated about being sick and in pain. They did another CT scan on Monday (November 16, 2009) and discovered the other pseudocysts were getting bigger. If not for the fact that I had already had a shot of blood thinner that day, they would have put in another drain that day, so they scheduled it for the next day (November 17, 2009).

Since they did not give us a specific time, my dad ended up being at the hospital all day (on his birthday no less). My stepmother got to the hospital sometime either right before the procedure or during. I cannot remember which--my memory is a little hazy on that. I do remember asking the radiologist where he was going to put it, and he indicated it would be about the same level as the other.

However, that was not the case. It turns out he could get a the one he had thought he would not be able to get to. So I ended up with a drain inserted pretty much right below my right breast very close to the diaphragm. I was in so much pain when they got me back up to my room that I consented to the pain pump that I had refused earlier that morning.

The pain pump did little good. It was not set to deliver a consistent dosage, so I only got pain killer when I pushed the button, and it was set on a 15 minute lock out. I apparently slept for a little bit that evening, but I woke up sometime before nine, and according to the nurse assigned to me that night, I did not fall back asleep until sometime after 4:30 a.m. The syringe in the pain pump ran out early--big surprise there--that had happened to me three times during my previous stay. This time I told them to take it away. When they started it, they neglected to tell me they would have to start another IV to run my antibiotics and pepcid. However, I would not let them--I told them to stop the pain pump while the other stuff ran. That did not go over very well with the nurse I had during the day shift (we had a bit of a personality conflict the last time I had been in too). Of course they would not do it without the doctor ordering it.

The doctor ended up switching me over to a patch, which worked somewhat better, but there were times I had to ask for more painkiller.

Friday (November 20, 2009), they did another CT scan. This time they gave me some Zofram ahead of time to see if it kept me from getting sick from the dye. No such luck. About a minute after they injected it, I got sick. Getting sick put me in incredible pain, and by the time I got back upstairs, I was in so much pain, all I could do was ask for painkillers. Dad had to explain to the nurse what had happened.

The doctor ended up deciding to keep me there over the weekend, because he did not want to send me home and risk something going wrong. However, on Sunday (November 22, 2009), I had another hospitalist, and she indicated she would discharge me if Interventional Radiology okayed it. Later that afternoon, the surgeon came to see me and he indicated I was not being discharged. However, that was not the case. Apparently the hospitalist signed off on the order that morning, contingent upon Interventional Radiology's approval. Around 6:30 p.m. a nurse came in and told me I was being discharged, so I called my dad. Turns out they had gone out of town for dinner. Fortunately a couple of friends had come to visit, so they took me home.

I went back to work Wednesday (November 25, 2009) then had two days off for the holiday. I ended up staying home both Thursday and Friday, but I did go to Thanksgiving dinner at a friend's house on Saturday.

Two days ago (December 1, 2009), I had a follow up appointment with my GI doctor. They tried flushing the drain that was causing discomfort, because it was barely draining. However, the saline solution started coming back out. Oddly enough, the other one went into overdrive.

Yesterday (December 2, 2009), I had another CT Scan, and they tried injecting the dye into the catheter . Today they called me and told me they could remove the drain that was causing so much pain, but that they needed me to come in for another CT scan tomorrow. The painful drain is out, and I have already contacted my GI doctor's office about getting a lower dosage of pain patches so I can gradually stop using them.

I am really trying not to worry about what tomorrow's CT scan will find, but I feel like I am waiting for the other shoe to drop. The radiologist who looked at the CT scan yesterday apparently spent a lot of time looking at it, and there is some concern about where the catheter from the remaining drain is. I guess I will have to just wait and see.

Another Update

Well, I was finally released from the hospital on October 5, 2009. I have not had the gallbladder removal yet, but I should know more about that after seeing the surgeon this week.

They never did repeat the endoscopic procedure. It was scheduled for September 21, and about an hour and a half before they were supposed to do it, I was informed that it had been canceled. I later learned that anesthesia was responsible for the cancellation. That same day they decided to change the amount of pain killer I received on a consistent basis through the pain pump. I had a pain attack that night, and the reduction of pain killer may have been part of it. However, from what I remember of it, I woke up in pain, so not being able to hit the button to get additional pain killer probably was also responsible for it.

They ended up doing another CT scan the next day (Wednesday), and they found pseudo-cysts. This was something they warned me could happen, so I was not completely caught off guard, but it still was not happy news. Making things more stressful, the surgeon came to see me that night, and told me the pancreas was not calming down, and he started talking about sending me home with the picc line still in and IV nutrition. I found out the next morning that he had not talked with any of the other doctors about this yet. It turns out he is of a slightly older school of thought, so that at least made me feel better. Fortunately the GI doctor and Hospitalist who were in rotation at that time did not agree about sending me home on IV nutrition.

They continued to reduce the amount of painkiller I received through the pain pump. I was all for this. I could not go home as long as I was on the pain pump, and frankly the pain meds tended to make me nauseous. They also gave me headaches and caused weird dreams.

On Friday they fixed it so the only pain killer I received from the pain pump was when I hit the button, and they changed it so while it was a higher dose, I could only get the meds every 20 minutes instead of the every 15 I had previously been able to get them. They also let me try eating toast. I ate the toast very slowly, not wanting to upset my stomach. Even though I was on clear liquids and Ensure by this point, I could only drink so much at once without upsetting my stomach. I was doing fine for a while, and then a pain attack hit. I am not sure if it was toast, the reduction in painkiller, or a combination of the two, but it was bad. I ended up getting sick to my stomach which made me feel better eventually, but that made me really sore. I had previously been sick to my stomach from the CT scan. Having to drink all that water with the contrast stuff in a short time before the CT scan had not gone over well on my stomach, and then I got sick again after they injected the dye. I am relieved to know that is common.

Later that night they moved me to another room. I guess they needed a room in the post-surgical area, so I was okay with it. They moved me at about 11:30 p.m. that night, and I swear, I think they hit every bump possible. I was still really sore from having been sick to my stomach earlier, and every bump hurt. That and it made me nauseous. By the time they got me to the new room, I told them I needed something for the nausea, and that I couldn't wait for a sublingual one to work.

The new room was in the new addition of the hospital. It turns out my room was pretty much right underneath the helicopter landing pads. There was an empty floor between my room and the landing pads, but it really did not do much to dampen the noise. Also, the wifi signal in that area was not strong enough for me to use some of my programs, so getting email and going to weekly chat was more complicated too. At least I could still surf the internet though--I would have gone nuts otherwise, because I still did not feel up to knitting.

I cannot quite remember when, I think it was maybe Sunday or Monday, but I started eating toast again along with a soft, bland diet. Eventually they removed the IV nutrition to try to stimulate my appetite. I still took it pretty easy though. A piece of toast here, some broth there, rice, and ensure pretty much composed my diet. I also ended up having cottage cheese for a mid-morning snack and cheese and crackers for a mid-afternoon snack. However, I started having issues with room services bringing the wrong stuff. A lot of time they brought vegetable broth instead of chicken broth, and they kept bringing the wrong cheese with the crackers. The first time they did this I tried eating some of the cheese, then decided I did not want to eat it. The second time, I told them it was supposed to be string cheese, so they went and got the right one. The next day, they brought the wrong one again, I pointed it out to the person, and he told me they did not have string cheese (different person than the day before).

On September 30, one of my friends had a hysterectomy, and I asked my doctor if I could go visit her, or would I need to have someone accompany me. He said if they could take me off the pain pump, I could go by myself, so I agreed. They had been switching me over to oral pain killers for the consistent medication, so it was not much of a jump, and I do not think I used the extra pain killer that much.

Visiting my friend was good for my mental outlook. However, when I got back to my room, I found out they were going to put me on a heart monitor due to my high heart rate. I tried pointing out to them that part of it was being moved to the new unit. It had been high most of my hospital stay, but it had gone up after being moved from post-surgical. I think part of it was the extra noise and the computer not working as well as it had in the other areas of the hospital. Part of it may have also been due the change in pain meds too, but I am not sure. My friend came to visit me the next morning after she was discharged, and she was surprised that I had walked all the way from my room to where she had been. I had taken it slowly, and I had been up walking a lot during my hospital stay, so it really did not seem like that much to me.

Sometime that morning after my friend left, the hospitalist came in and told me I needed a transfusion, because I was really anemic. This freaked me out and I asked if we could get the iron levels up through pills. He said it would take weeks. I did feel better after the transfusion, but I had some mixed emotions. I was really glad that I donate blood some what regularly--good karma and all, but I was bummed too, because I will not be able to donate blood for a while now (looks like a year if I understand the blood center's guidelines correctly).

The transfusion helped get my hemoglobin levels up, but they dropped again somewhat. They ruled out a GI bleed, much to my relief, and if it continued to drop, they were going to do another CT scan to see if I was bleeding in my pancreas. However, that weekend, I noticed I just could not stay hydrated enough. I was already drinking a lot of water, but I my mouth kept drying out. Somewhere in the back of my mind I remembered something I had seen on the Learning Channel or something like that and it occurred to me that my body was pulling all this water to increase blood volume. That may have been what was happening, because by Monday morning, my hemoglobin was back up, and they let me leave.

I have spent most of the last week resting at home. I did go out to get groceries a couple of times, and did a few other things to help with my mental outlook, and I am being released back to work tomorrow.

This whole experience has really been an eye-opener in so many ways. I have to put myself first more than I have been. I need to learn to say no to people, so I do not stretch myself too thin. Do not get me wrong, I do not mind helping people, but if I do not take care of myself more, I cannot help other people, something I really need to keep in mind now. This whole experience has also shown me some things about my friends too. So many of them were offering to help in whatever way they could. The online group I belong to did an outreach and sent me a gift card to Amazon.com. It certainly was not expected, but it was touching all the same. All the good thoughts, words of encouragement, prayers, etc. that I have received from people have been greatly appreciated. I really believed those things helped get me through a very difficult time in my life. Thank you.

Update

Sorry I have not blogged in a while, but I have a really good reason. Sunday, September 6, 2009 while I was riding to Irish Fest I was not feeling terribly well. It finally passed and I thought it was more of the basic GI distress and associated back pain. I was fine through most of Irish Fest that day, but towards the end of our time there, I started feeling uncomfortable again. Chalking it up to lactose intolerance, I dealt with it while we went to Yarn Shop and More so Stepheny could spend the gift certificate she won (she won 3rd place in the non-wearable category). Well, after leaving there I stopped at a pharmacy to get some generic phazyme, and it didn't help much so I was pretty uncomfortable on the drive back to town. After we dropped off Brigette, I started feeling like I was going to be sick to my stomach, so I figured I had eaten something that had disagreed with me. About five minutes after I got home, I got sick. After being sick three times, I called my dad and asked at what point should I go to the Emergency Room. He said if I was asking, now. He came and picked me up, and I continued to get sick, all the while thinking, I am going to feel really silly if I stop being sick once I get there and start feeling better. Unfortunately that did not happen.

After getting to the ER, we got checked in and went through the usual wait. I ended up laying on one of the semi-circular benches because most of the chairs were taken, and frankly I just felt lousy. I got sick at least once in the waiting room, maybe more, my memory is kind of fuzzy on that. At one point they took my vitals, and eventually I got called back into the see the triage nurse. Then it was more waiting in another area while we waited for a room to open up. Again I was laying on one of the padded benches from what I can remember, and eventually they got me back to a room. At one point I had a CT scan, and at some point they gave me something for the pain, but I am not sure in which order. At another point I remember being told I was had pancreatitis (I have since learned it is a moderate case of acute pancreatitis), and I was being admitted.

As I understand it, it apparently passed a gallstone into a duct that caused all these issues. I knew I had gallstones, but I had never had any of the symptoms my doctor told me to watch for. Plenty of people have gallstones and are never troubled by them. And I have been assured by three different doctors that my previous problems probably were unrelated. There probably were not any early warning signs that could have tipped me off that this was coming.

Yesterday, they tried to do an endoscopic procedure to see if a duct was still blocked, and apparently I was thrashing about in too much pain, even with a sedative, so they are going to try again next week, this time with anesthesia.

I do not want anyone to think I am looking for sympathy with this post. It is purely intended as an update in case some of you had not already heard through other sources. I have been incredibly reluctant to post anything on facebook about it, but I have been trying to get the word out to people I know.

Celtic Knot Stole Pics

Here are some pictures of the finished Celtic Knot Stole.




I think it turned out very well, especially considering it is only my second serious lace knitting project. And while I feel like I am still a novice lace knitter, one of the judges at KC Irish Fest told me I should not call myself a novice lace knitter, because I would be setting the bar too high. Speaking of Irish Fest, I did enter the stole. There were some very high caliber entries, including a circular shawl that they actually put through a wedding ring. Not being a serious lace knitter, I am not entirely sure of the significance of that, but I know it is important. Upon hearing that they did that, it was no surprise that it won first price in the wearable item category. In all likelihood, it will win the grand prize.

I will be entering the Once Upon a Time Blanket today. Mary was kind enough to bring it to town so I could enter it, and I will be heading out to Kansas City in the next hour or so.

This may be the last year I enter anything in the knitting contest at Irish Fest but not because I did not do well. The same judge who told me I should not say I was a novice lace knitter expressed an interest in having me be a judge next year because I clearly knew what I was doing. Additionally, now that I have paid off the student loans, I want to start attending Scifi/Gaming conventions again, and Dragon Con in Atlanta is usually held at the same time as Irish Fest.

FO--Celtic Knot Stole

I finished knitting the Celtic Knot Stole at the pub late Friday night/early Saturday morning and then wove in the ends Saturday morning.


When I had blocked the Seascape Stole, I discovered that by the time I had it on the blocking wires, it was pretty well dry, and that made it more difficult to block. So this time I put it on the wires first. I started that process yesterday, but I did not have much energy, so I did not end up putting it in the tub to soak until this morning. Per the designer's instructions, I let it soak for about an hour. Then I drained the tub and rinsed it a bit. Next I held it up to let the excess water drain off. Once the water stopped streaming off, I put it on a towel to blot up more of the water.

While it was soaking, parts of it had come off the blocking wires, so I threaded the edges back on. The wires help make a nice straight edge, and it beats using hundreds of pins to get a straight edge. Once that was done, I laid it out on the daybed I have in my spare room/craft room and started stretching and pinning it. It took probably at least half an hour to get it all pinned.


I took it off the wires this evening. I am pretty happy with it, but I may block it again before KC Irish Fest. I do not have a picture of it off the blocking wires yet, but I will post one once I get a good one.