Ever think of me as delicate as a butterfly?

 
Sure see a strong resemblance here.  I wonder what side of the family it came from...my butterfly coloring! :-)

Nothing much new to report.  I hate that.  One day at a time.  I went for a chest film today hoping that the dr would pull my stent out then and there. I was not so lucky.  Now I'm hoping for sometime next week.  We're hoping that it's the stent that's causing my pain now, like it did last time.  I just hope I can make it through the weekend without having to be admitted, ugh!

The kids came by for a couple hours this afternoon so we could open presents.  They really loved all the stuff they got.  Mom and Lew got them tablet computers and they are in LOVE, especially Kyle! For anyone interested, I got the Acer Inspiron A500 in the 10" size.  I really really love it!  Bought the one for Cami, but I loved it so much I kept it, then bought another for each of th kids. I like it better than the ipad, but it only uses wireless (probably smart with these kids anyway.) so your 4G wouldn't work.  Otherwise, it has Adobe Flash and others - I just love it!

Well, I probably won't know much before Monday or Tuesday when they'll pull the stent. That's definitely outpatient, so I should be fine to go home that day.  And my disability has been appoved though 1/20, so that may be the date I look to go return to work.

Thanks, everyone!

You guys rock! Thank you all so much for the lovely flowers, and meals, and all the support you have given us. It means so much, and is so appreciated. Mom and Kevin came down to visit yesterday - it was good to see you guys! Thanks for coming to see me. Thanks, mama for the flower plate, and the lovely letter that went with it.  I never knew a lot of my history, so it was neat to read about it.  Did Kevin get the fish plate?  Or was it Nate?

I'm feeling better today. Less pain than in a long time (though I can't tell yet if it's better than before). Let's see...I got a call from the nurse at Metlife that she saw my surgical reports and was recommending that my case be approved and submitted for Disability payment. She said that they would call on Wed, which of course they did not, but I think it will finally being approved. I have been home for 6 weeks now.  Without pay. 6 weeks of being bedridden and in the hospital before they say I'm sick.  I swear, they just drag everything out and deny everything hoping you'll just get too tired to keep fighting. Seriously, I can barely write my own name anymore, much less work! Now, if I were a mechanical engineer, it would all be different... ;-)

In other good news, I'm starting to lose some weight! (Not too many people with CP actually want to LOSE weight, lol!) Oddly enough, before my ERCP, I kept gaining weight even though I was only on a liquid diet. I think it was my body just trying to hold on to anything it could get. Then from Thurs-Sun in the hospital, I gained 10 lbs in just those 4 days. Probably water weight. Now from Mon-Wed I've lost about 15 lbs. A side benefit, lol! I'm still having some trouble eating - mostly because of the nausea. It's pretty bad - probably worse than before my ERCP. Yesterday, I was pretty hungry - I ate a yogurt, an Ensure and some oatmeal. I got brave today and ate a half bowl of chicken soup. It made me really nauseous but so far it's stayed down. It has also made my pain worse - thank goodness for pharmaceutical advances.  I was really feeling pretty good until I ate that soup today, darn it.  I really want to get back to work.  Keeping the pain controlled and wean off the narcotics is a big step, but if I can't eat, that won't last too long.  Ugh.  I guess I should've posted this in the morning before I ate.  I'll have to remember that for the future!

What's black and blue and red all over?

I have bruises all over my arms and legs and stomach. When they check you into the hospital, they ask you if you live in a safe environment. Yes ma'am, it only gets dangerous once I'm here!

I'm still really really sore. I think it's starting to feel more like surgery pain than the blocked ducts type of pain. I realize now that it's no oing to just go away. The pancreas does not heal itself. The only "cure" is to remove the pancrs, and it's still iffy that the pain will go away. But I'm 100% certain that it will keep coming back and continue to damage my pancreas in the meantime. (Though Dr. C said that it hadnt changed much since the last one a couple years ago, so that's good!) Your only other choice is to live on narcotics forever.  I don't need that now.  (Too bad I didn't have pancreatitis when I married Scott!  I could've used some narcotics back then...at least given me an excuse for why I did it, anyway!)  :-D

Guard! Guard!...

Free at last, free at last!

I'm home, yay! Those people were horrid.

When I was 11, I had my appendix out and then caught meningitis so I was in the hospital for a couple weeks. There was a little boy in the room next to mine - he was about 2 or 3. His parents literally never came to visit him the entire time I was there. He would crawl out of bed, so the nurses put him in a crib with a top on it. He would stand up, rattle the bars, and cry, "Guard! Guard! Let me out!" Poor little guy. It took me 25 years to realize what this kid knew from the get go - it's easier to pretend that you're locked up in a penitentiary than accepting the reality of what those "guards" are doing to you. If nothing else, this stay will definitely factor into the decision as to whether I stay in Tucson or travel to MN for any future medical needs!

IVs suck

My blood work came back much better today, so i will probably get to go home. I still can't get pain relief using just pills - still need an IV but he's trying a different dosage and hopefully that will do it. My night nurse, Jamie was my favorite person in the whole world! She would be able to keep my pain low the whole time so i didn't have these up and down spikes. But, she has the next 3 days off, so i am sad. My shoulder IV blew last night and even the trauma nurses could get anything started. Eventually, Jamie was able to get one in my foot! Crazy. It actually feels better than the ones in my arm.a

So, hopefully this new dosage will work and I can go home today. I'm a little discouraged because this feels like the same pain I had before. I guess time will tell...

Merry Christmas everyone!

Merry Christmas! Hope it is joyful for everyone!

Still here!

Merry Christmas Eve, everyone! I'm still here in the hospital, doing OK. I'm still hoping to get sprung tonight, but I think my chances are waning. My white blood cell count is high, so they're trying to figure out why. They did a chest ray on me this morning - I'm guessing to check for pneumonia maybe? I have a bit of a cough, but certainly don't feel like anything close to pneumonia. Not sure what those xray results are yet, though.

The vein with my IV blew this morning so the nurse stuck me 9 times and still couldn't get a new one started. I talked the Dr into just prescribing me oral meds since I wanted to go home today anyway. Then around lunchtime, the nurse came in and said the Dr ordered a new IV and a blood culture, and then another blood culture an hour later. So, she tried 4 or 5 times to get an IV started, but she couldn't do it. They called a trauma nurse to try and it took him about 5 sticks before he got a tiny one in my shoulder. It's a 24 gauge that he says they only use in infants. I just have really sucky veins! Right in the middle of this, Lew brought the kids over to see me, so they had to take a little walk while they finished up my IV. But it was really good to see my babies! They each brought me very nice Christmas cards so I have them up on a shelf in my room. They were so sweet, and very interested in everything that was going on. Kyle especially was asking me all about IVs and thought that the saline bag was the coolest thing ever, lol! He was fascinated that I could get water through my veins AND drink it through my mouth at the same time! Cami was a little more reserved - said she doesn't think she wants to be a nurse anymore because she could never stick a needle in someone. She was quiet today - I feel so bad that she (and everyone) has to deal with this. It's just crappy that this nasty illness impacts all my friends and family, too.  :-(

But, I'm feeling much better today, so we'll cross our fingers that I can go home soon! Lewy, thank you for taking such good care of my babies (and me!). Marilyn, thanks for making pies with them - they love to bake with you. I just want them to have a happy (and normal) Christmas. Hugs out to everyone - I'll keep you posted as soon as I know what's going on!

Feeling better tonight

I got a new nurse who is very nice and has gotten my pain under control. I don't know why some people are even in thee nursing field! But, I'm feeling much better and even managed to eat some chicken noodle soup which I haven't been able to eat for the last 2 months! I think I will probably get to go home tomorrow. I'm still in some pain but I think I'll be able to manage that at home now. So, thank you everyone for your comments and prayers!  Richard and Heather came by to visit today and brought me some pretty flowers - thanks, guys!

12/23/11 update

Dr. Cunningham, my GI said that I had "pancreatic parenchymal abnormalities consisting of hyperechoic strands and hyperchoic foci were noted in the entire pancreas. The pancreatic duct had hyperechoic walls in the body of the pancreas. There was no sign of significant pathology in the common bile duct." I really have no idea what that means, but I think it's basically saying that I have chronic pancreatitis. I don't remember what details I've already put on this blog - the hospital blocks blog sites for some reason. I can get on Facebook, email, etc but no blog. I can update it by sending an email, so that's what I have to do for now. Anyway, the stuff above is the report from the EUS. Then he did an ERCP. My minor papilla was swollen shut again, so he placed a stent in it. This was basically good news because I should get some relief once the irritation dies down. He also cut my major papilla, but did not stent it. (Not quite sure why he cut it, as it is a dead end and does not secrete enzymes.)  He also looked at my bile duct and that looked good and open, which is good. He cut that duct too, just for the fun of it, i guess. My liver tests a couple weeks ago indicated that my liver may be damaged from a backup of pancreatic enzymes, but it was not.

I'm still in the hospital, at least for another day. My blood work all turned out okay, but I'm in a lot of pain and can't get it under control yet. I had to plead with the Dr to try more or different meds, and then didn't submit the order. Then the nurse got all irritated with me when I asked her to page him, and now she's just flat ignoring me. I hate hate hate stupid Tucson medical care!

I will still consult with the Tucson pancreatic surgeon, Dr. Rilo. I have heard that he is very good. I don't have an appt with him yet - Dr. Cunningham said he will consult  with Rilo and get me an appt. I also got dates for the MN Dr.  I am meeting with Dr. Freeman (who worked his magic on me originally) on Feb 1, and Dr. Pruett (the surgeon) on Feb 2. Dr. Pruett is the chief of surgery at UMN, so I will be in good hands. That's all I can remember for now!

The epitome of health

Or maybe the antithesis. My top lip is very swollen. We're not sure if it's from one of the instruments that was banging into my lip during my ERCP, or if it's an allergic reaction to something they gave me. I don't have hives or any trouble breathing, so who knows...

UMC Report

A quick note to all -

Megan is out of surgery and is feeling nauseous but not in too much pain (right now).  The risky part of the day is over, as Megan is now admitted into the UMC hospital and resting in bed for tonight. 

She went in to surgery about 1:45pm and was done by 3:30.  Dr Cunningham performed an EUS and also went forward with an ERCP.  During the ERCP, he (cut) opened up the bile duct (sphinterotomy) as well as the ventral duct (sphincterotomy) of the pancreas.  He also noted siginificantly reduced flow of the Dorsal duct and so he inserted a stent. 

Clearly she will be in pain tomorrow as her cranky panky reminds her not to mess with it.  But we are hopeful that as the immediate pancreatitis wears off, she will return to a lower level of pain than when she went into surgery.  The condition of Megan's pancreas will be explained in a future blog when Megan and Dr. Cunningham are able to provide detail.

Thank you, all of you, for the generous love and support you have given us this Christmas season.  It's quite possible that Megan will be home for Christmas!

Lew

On our way!

We're heading over to UMC now. All the snowbirds and people with last minute Christmas shopping to do have decided that now is a good time to be out on the roads. What a zoo! But, in 2 more hours I will have some happy drugs flowing through my veins and not a care in the world about bad drivers. Wish me luck!!!

Sent via BlackBerry from T-Mobile

No diabetes!

Yet.

My endocrinologist called with my test results. My A1c is a measurement of my blood sugar levels over the last 3 months. Ideal is 6.0 - mine is 5.7. My fasting glucose was 111. Under 100 is normal, over 120 is diabetic. So, I fall into the "pre-diabetic" category. After eating, my glucose went down to 104, which means that my body is making insulin that kicks in when I eat. So, right now there is nothing medically that we need to do. I can probably make things better by following a diabetic diet, although the pancreatitis diet (all carbs) cannot co-exist with a diabetic diet. Dr P said that if I have another bad pancreatic attack, I will probably lose enough islet cells to throw me into diabetes. Of course, you never really know.  Now the issue becomes - what do we do on Thursday?  Dr C said that cutting and stenting my duct was not going to cause any damage to my pancreas.  BUT, the procedure always causes a bad attack of pancreatitis, which is why I end up spending a week in the hospital after that procedure.  So if he cuts, I can probably get some short-term relief so I'm not so desperate while visiting specialists to determine the next steps.  And I have no idea what happens when they harvest the islet cells...if you're diabetic before, is it possible that you won't be after they harvest the islet cells?  I guess it's more research that I have to do in the next 24 hours...

Dec 19, 2011

I saw Dr Mitchell Parker today, my endocrinoligist. A friend of ours has a brother with pancreatitis and a benign thyroid tumor. Once they removed the tumor, his pancreatitis went away and hasnt come back. So, I figured I would at least look into that possibility. He had some bloodwork from my thyroid and said that it was absolutely normal - it has actually started working better in the last couple years. However, he looked over the results of some blood glucose measurements that I've taken at home, and says that those are indicative of diabetes. So, I'm going in first thing tomorrow (Tues) and is going to run an "official" test. This wouldn't be surprising to me because it's clear that my pancreas doesn't work anyway. It's certainly not a good thing, but it would sure make the pancreatectomy decision easier! One day at a time...

Also, we've been able to get my pain a little more stable. I have a fentanyl patch that slowly releases the medication into my bloodstream. I change the patch every 3 days. It has really helped to knock my pain down to a very low level so I'm not dealing with the peaks and valleys. I feel pretty good, as long as I'm in bed. But getting out and about is still pretty hard on me. Lew took me to the Dr today and then we stopped to get a video, and I was really nauseated and in a lot of pain just from that.  Only 3 more days til my ERCP! I know it's definitely not a 'cure', but hopefully it gets me to be a little closer to resembling a human being!

Dec 18, 2011

I spoke with Dr Cunningham (my GI in Tucson) on Friday night. I had a few questions for him - mainly if it was worth having him cut my ducts if I was going to end up doing something surgical anyway. I had heard that the sphincterotomies (cutting the duct open) cause more damage to the pancreas and therefore there would be fewer islet cells to harvest if I did end up doing the pancreatectomy. He said that there was a very low risk of damage because he used a very soft stent and cut it short so it doesn't go deep into the duct.  The payoff of getting some relief is well worth the risk. So, he will go in and look for damage next Thursday (using the scope and ultrasound) and cut the ducts if he feels that he can safely do so. We also talked about my MRI results. He said that my pancreatic duct was mildly dilated (a sign of chronic pancreatitis, CP) and there was some "mild pancreatitis." He was not too convinced that there was only mild damage - usually, they use something called secretin during the MRIs that stimulates the pancreas to get better views. However, the radiology center here no longer uses secretin so  Dr C was not happy or convinced of the results. He said that he will get a much better picture with the endoscopic ultrasound.  He also said that my liver was mildly inflamed.  I think that happens when the digestive enzymes get backed up into the common bile duct and starts irritating the liver as well.  This could be a sign of a more advanced disease and could help make our decision easier about whether to remove the pancreas.  He also said that he is going to get me in to see Dr. Rilo who is the transplant surgeon here in Tucson (said he would push him to get the earliest date possible).

I'm also excited because I get to meet up with 2 ladies who are coming to Tucson this week for their final testing before they undergo pancreatectomy.  I met them via a Facebook group.  They are further along this process than I am, so I think I will learn a lot about all of this from them.  One lives in Phx and the other in Colorado.  Apparently, this Pancreatic Center in Tucson is very, very good.  I am still going to meet with the team up in MN and will certainly make my decision based on who will do the best job, but it sure would make lots of the logistics easier if I can be treated close to home.  But we won't be making any of those decisions until AFTER my ERCP on Thurs! I'm starting to get a much more optimistic outlook on all of this, at least.

I'm also meeting with an endocrinologist tomorrow (Monday) to pick his brain.  A friend of ours has a brother who was hospitalized for months with pancreatitis.  They ended up finding a benign tumor on his thyroid.  Once they removed it, all signs of pancreatitis went away and have not come back.  It could be just a fluke, but I'm willing to have someone look at it.  Besides, people need an endocrinologist with any pancreatic surgery because they are the specialists in insulin, so it's likely I'll need to establish a relationship with this guy anyway.  I'll update once I hear what he has to say...

Another great site I found! It has some very good descriptions about the pancreas; what it does, diseases and treatments.  http://crankypanky.com

My ERCP is scheduled for next Thurs 12/22.  Hopefully Dr C can open up my ducts again to provide some relief.  I've accepted now that this is not going to go away, and I won't be able to keep cutting the ducts.  Still, I'm hoping that I can feel good enough to go back to work and we can deal with the surgical options when we're not in crisis mode.  I'm also going to see the endocrinologist on 12/19.  A friend told me about her brother who had pancreatitis and they found a benign tumor on his thyroid.  Once that was removed, he hasn't had a bout of pancreatitis since.  I figure we may as well explore that option, though I think it's unlikely for me.  I have clear medical evidence (finally!) that I had elevated pressures and divisum, so this is a long shot.  But hey, what the heck - my new full time job is to visit as many dr's as humanly possible!

Again I want to thank all of our friends and family for their support and prayers.  You all have helped us so much through all of this.  There's not a whole lot anyone can "DO" but just keep praying.  Love you!!!

Oh, here's another site I found.  Apparently, Tucson has a "Comprehensive Center for Chronic Pancreatitis."  Who knew?  Really sad that I live here and have never heard of it before, although it's at UMC which is where Dr C works.  There's a good article on the different treatments for pancreatitis.  http://www.pancreatitiscenter.com/chronicpancreatitis_treatment.aspx

A bit of background

So, where to begin… I’m writing this blog mainly to keep friends and family updated with my status.  However, I have gained such an incredible amount of information from blogs of others dealing with pancreatitis, maybe one day this will be helpful to someone else going through a similar ordeal.

I guess it really started in March 2006 when I had my gall bladder removed.  It needed to be done – I had 3 large (ping-pong ball sized) stones in there.  The surgery went fairly well, although my surgeon had a very difficult time removing it.  Apparently, I have a very unique anatomy, and my gall bladder was connected to both my bile duct and my liver.  But, I recovered quickly and was back to work in 2 days.  Then about 6 months later, after a large dinner, I started vomiting uncontrollably and developed severe abdominal pain.  I figured it was a case of food poisoning, but it just never got better.  Maybe some day I’ll get into all the details, but basically I was incredibly sick – bedridden – for 2 ½ years until I saw a Medical Mysteries show about SOD (Sphincter of Oddi Dysfunction), researched the best doctors in the world, found Dr Freeman in MN and flew out to see him.  He performed an ECRP with manometry and diagnosed me with SOD as well as incomplete pancreas divisum.  All of my pancreatic enzymes flow through my minor papilla, which is incredibly tiny and loops over itself twice.  Because the duct doesn’t open to allow for the digestive enzymes to be released, they back up in my pancreas and it basically digests itself.  It’s horribly painful – the worst pain in my life.  I can’t even describe it to others.  Anyway, Dr Freeman did a biliary sphincterotomy and a minor papillotomy, basically cutting both ducts open.  It was amazing.  After being bedridden and in and out of hospitals for 2 ½ years, I finally felt better.  Seriously, he did the procedure on a Thursday and I was scuba diving in Cozumel the next Wednesday.

That worked for about a year.  Then in April 2009, Dr Cunningham in Tucson performed the same procedure.  (Dr Cunningham actually trained Dr Freeman, so I felt ok about going to see him.)  Immediately thereafter, I actually felt worse.  I guess one of the stents stayed in my pancreas instead of falling out like it’s supposed to, and that was what was causing the pain.  During that procedure, Dr Cunningham also diagnosed me with chronic pancreatitis.  This means that my pancreas is constantly inflamed.  I will get bouts of acute pancreatitis that make me drop to the floor, but at other times there’s always that low, underlying ache that never really goes away.  It’s tolerable, but not fun.  I have very few days when I’ve got a ton of energy and am ready to go tackle the world.  Most of the time, I’m just exhausted and want to curl up in bed.  I try to fake it at work, because I have to.  Which means that my family suffers because home is the only place where I don’t need to pretend that everything’s fine.  It’s not fair to them, and I want to apologize for that.  But they’re wonderful and supportive and I could never get through any of this if it weren’t for them, so thank you.  From the bottom of my heart!

Here’s some good info on SOD and what a sphincterotomy vs sphincteroplasty is:  http://sod-stinks.blogspot.com/2007/04/transduodenal-sphincteroplasty.html