I'll start off by saying that I am so blessed. These past couple of weeks have been a HUGE reminder to me about just how much GOD loves me, and how richly He has showered me with His grace. It is so easy for me to lose sight of the things that really matter when my world is consumed with vomiting and pain.
Despite all of the pain and yucky-ness that I experience in my physical body on a daily basis, this Christmas has been a wonderful time filled with laughter, love, and the amazing support that I feel from my family and friends. Each moment spent has been a breath of fresh air for me both spiritually and emotionally. I'm delighted to report that as we celebrated Jesus' birth, we have the privilege to look into the future and experience a profound sense of HOPE.
My ERCP went well on Wednesday, and I just had to spend one night in the hospital. My sleepover at the hospital had a couple of unfortunate mishaps with hives, veins collapsing, and IV sites rendered useless. But, I was able to make it through the procedure and the night (with 3 new IVs in 5 attempts.) I was thankful to have delightful nurses and and an excellent IV therapy team--it seems to make everything a little better when people are smiley at 3 in the morning.
The findings from the test: I had a significantly inflamed bile duct, due to adhesions (scar tissue.) There were no stones, and no sludge in the duct, the opening was simply too small because of the scar tissue strangling it off. Through the endoscope using an inflatable balloon and some kind of cutting implement, they were able to loosen the scar tissue which was strangling the bile duct, and also made an incision to increase the opening of the bile duct. I managed to avoid the complication of pancreatitis (yay!!), and got to go home on time. (double yay!)
Since then, we had 14 people over for Christmas dinner last night, and Marcus, mom, Sarah, and I pulled it off. The food was amazing, and the company was even better. It was so much fun to host my first official "family gathering"--so I went a little crazy; making place cards, and other festive table decorations. I even used festive cupcake flags with gingerbread men on top for the apple-stuffin' muffins. I know, I'm ridiculous. :)
I think that's all for now. I'm off to take another nap.
Sadly, I'm not feeling 80% better like the doctor had hoped, but I'm trying to remain optimistic. I'm hoping that the lingering pain I'm experiencing is just from the procedure. I don't think that's really very likely, but I'm not positive. I go in for a follow-up appointment on Jan. 6.
Hugs to all.
b
Sunday, December 26, 2010
Wednesday, December 15, 2010
oh, bile ducts
After much anticipation this past week, as I waited anxiously for the doctor's call, I finally received it last night.
The good news is that I don't have hepatitis or any other auto-immune diseases that he checked me for.
The bad news is that my bile duct is very inflamed, and this could be caused by a stone, or "sludge" that's built up in the duct. This is most likely the cause of my elevated liver enzymes and could possibly be causing my increased symptoms of late (like more nausea, vomiting, and abd. pain.)
The way that they fix this, as well as gather more information about the source of the problem is by performing an ERCP. I am including the actual name of the procedure, because I believe it's the largest word I've ever seen (except for floccinaucinihilipilification--which is a word that I learned to spell in order to avoid running 3 miles at soccer practice when my scientist coach gave us the challenge). Anyway, the actual name of the ERCP is...
Endoscopic Retrograde Cholangiopancreatography.
Exciting, huh?
If you'd like to read more about this procedure, here is a link:
http://digestive.niddk.gov/ddiseases/pubs/ercp
I'm calling the doctor this morning when they open, and will hopefully be able to schedule the procedure before Christmas.
I'm also trying desperately to get my Christmas cards out before then. :) I made cute home-made ones. Let's see if they make it to the post office.
Love and hugs,
brelin
The good news is that I don't have hepatitis or any other auto-immune diseases that he checked me for.
The bad news is that my bile duct is very inflamed, and this could be caused by a stone, or "sludge" that's built up in the duct. This is most likely the cause of my elevated liver enzymes and could possibly be causing my increased symptoms of late (like more nausea, vomiting, and abd. pain.)
The way that they fix this, as well as gather more information about the source of the problem is by performing an ERCP. I am including the actual name of the procedure, because I believe it's the largest word I've ever seen (except for floccinaucinihilipilification--which is a word that I learned to spell in order to avoid running 3 miles at soccer practice when my scientist coach gave us the challenge). Anyway, the actual name of the ERCP is...
Endoscopic Retrograde Cholangiopancreatography.
Exciting, huh?
If you'd like to read more about this procedure, here is a link:
http://digestive.niddk.gov/ddiseases/pubs/ercp
I'm calling the doctor this morning when they open, and will hopefully be able to schedule the procedure before Christmas.
I'm also trying desperately to get my Christmas cards out before then. :) I made cute home-made ones. Let's see if they make it to the post office.
Love and hugs,
brelin
Monday, December 6, 2010
oh, and one more thing.
I got a phone call from Dr. Patterson this morning. He left a message asking me to return his phone call. In my experience, it's not really a good sign when the doctor himself contacts you about your lab results... and I was right to be concerned.
The good news is that my potassium levels have gone back to normal. Normal is 3.5, and I have made it to 3.8. Phew. This is really good because potassium is directly related to your heart pumping correctly.
The bad news is that my liver enzymes that were elevated before have actually become more elevated. Normal for this test is 40, mine were 75 in the ER on 11/16, and now are 105. There are several potential causes for this: One, which makes the most sense, is malnutrition. Other options include: hepatitis, auto-immune diseases, nonalcoholic fatty liver, and obesity. I think it's safe to say that we can rule out obesity. :) Sorry, I had to make a joke. :)
Please pray that God will miraculously heal me before then--so that the elevated liver enzymes are just a thing of the past.
I've included some pictures of our uber-decorated-we can't wait for Christmas-house.
Here is a photo of our enormous Christmas tree:
(please note the 11 strands of lights that Marcus used)
We love you, and as always, covet your prayers.
Hugs,
b
The good news is that my potassium levels have gone back to normal. Normal is 3.5, and I have made it to 3.8. Phew. This is really good because potassium is directly related to your heart pumping correctly.
The bad news is that my liver enzymes that were elevated before have actually become more elevated. Normal for this test is 40, mine were 75 in the ER on 11/16, and now are 105. There are several potential causes for this: One, which makes the most sense, is malnutrition. Other options include: hepatitis, auto-immune diseases, nonalcoholic fatty liver, and obesity. I think it's safe to say that we can rule out obesity. :) Sorry, I had to make a joke. :)
Anyway, the way to figure out what's causing the problem is to do an ultrasound of my liver, and then draw more blood. The nurse-scheduler lady is going to call me tomorrow to let me know when my tests are.
Please pray that God will miraculously heal me before then--so that the elevated liver enzymes are just a thing of the past.
A picture of our awesome kitchen:
(before the Christmas fairy hit the kitchen)
Here is a picture of our living room/dining room before the decorating began...
I've included some pictures of our uber-decorated-we can't wait for Christmas-house.
Here is a photo of our enormous Christmas tree:
(please note the 11 strands of lights that Marcus used)
Here is a picture from a couple of weeks ago, when we had a magnificent snow storm: This is our backyard:
I thought if I threw in some cheery photos at the end, it would counteract the lame news. This is the fireplace in our family room:
We love you, and as always, covet your prayers.
Hugs,
b
Saturday, December 4, 2010
the doctor's report
I got in to see Dr. Patterson at Virginia Mason yesterday. One thing that I'm thankful for is really good, compassionate, thorough GI doctors. We had an hour long appointment discussing future surgery, abdominal pain, dehydration, and a host of other things.
1. Gastric Pacemaker Surgery- In his mind, the sooner I can get the surgery the better. He thinks that I'm going to be feeling much better with the device implanted, and he is hopeful that the insurance company won't fight too much about paying for it because I've already tried every other treatment option known to man. He is changing hospitals on Jan. 1, and will become the head of gastroenterology at Swedish. Swedish is about 3 blocks away Virginia Mason, so still very reasonable to commute to. Once there, he hopes to assist in the surgery there as soon as they can get it scheduled. (most likely in Jan. or Feb.) To begin the process, the team at Swedish has to get a pre-authorization for the surgery from my insurance company. He was going to speak to someone yesterday afternoon to begin that process.
2. Abdominal Pain- He encouraged me to remain on the fentanyl patch (a low-level narcotic) that basically takes the edge off of my pain, making life a little more tolerable. It doesn't make me dumber or have any other frustrating side effects, which I enjoy. He's also said that I can continue on vicodin until surgery. I'm trying not to take this very often, just because it makes everything a little foggy. He's also given me some more anti-nausea meds, nothing new--just ones that I've been on for several years now.
3. In addition to all of those things, one of his nurses will set up a standing order for me to receive fluids at a clinic in Issaquah. This is going to be terrific because I won't have to visit the ER when I'm dehydrated, and hopefully the additional fluids will help me get back on my feet a bit. He's hoping to avoid putting another picc line in (as am I), and we'll just wait and see how often I end up going in for fluids.
4. Blood work: While I was in the ER on 11/16, they had taken a blood draw and run a million tests on it. That day, my potassium levels were low, and my liver enzymes were almost twice the "normal" number. He asked if the ER had told me anything about that, and if they'd suggested any treatment options. I told them that the ER said my blood work was all normal...interesting. So, he had me go to the lab to have another sample drawn to compare. Hopefully my numbers will be better this time, as potassium is an electrolyte level that affects my heart.
5. I had a little bit of a rough experience with one of the lab techs there. When I went in, I told her that I had veins that look good, but really roll. And that sometimes once you get blood, it just decides to stop pumping, so that I end up getting stuck 5 times before they get all they need. She had me roll up my sleeves, and looked at both arms. I suggested that she use a butterfly needle, as that has a tendency to work better. She insisted that she didn't need to because my veins all looked really good. (I sat there, slightly frustrated, but tried to hold my tongue.) She took out several vials that she needed to fill, grabbed a normal "grown-ups sized" needle, and went for it. Interestingly enough, she was able to hit the vein right away, at the same time bragging to me about how "the other lab techs must've not known what they were doing, and had no business telling me that my veins were bad." And then...nothing. She got about 1/2 of the smallest vial filled, and then (surprise) my vein quit pumping. I wasn't sure if she'd even gotten enough to do the test, and was wondering if she'd stick with her original story about how amazing she was--or if she'd have to poke me again because she didn't listen to me. She opted to not say another word, bandaged my arm, and told me to have a nice day. Hmph.
Overall, I'm trying to be optimistic about the future. I'm still feeling bad (worse than normal), but it seems that my weight loss has leveled out for the moment. I've kept the same weight for several days in a row now. During my abdominal exam, Dr. P was concerned about impacted bowel in my ascending colon, as my belly was noticeably distended on the right side. He prescribed an over-the-counter laxative called magnesium citrate, which I am enjoying for breakfast this morning. I put a straw into the beverage to trick myself into believing that it tasted good. I'm pretending it's like a pomegranate margarita. It's a stretch, but it helps me to envision I'm laying on the beach in the warmth of the sun. :)
Thanks God, for imagination. :)
1. Gastric Pacemaker Surgery- In his mind, the sooner I can get the surgery the better. He thinks that I'm going to be feeling much better with the device implanted, and he is hopeful that the insurance company won't fight too much about paying for it because I've already tried every other treatment option known to man. He is changing hospitals on Jan. 1, and will become the head of gastroenterology at Swedish. Swedish is about 3 blocks away Virginia Mason, so still very reasonable to commute to. Once there, he hopes to assist in the surgery there as soon as they can get it scheduled. (most likely in Jan. or Feb.) To begin the process, the team at Swedish has to get a pre-authorization for the surgery from my insurance company. He was going to speak to someone yesterday afternoon to begin that process.
2. Abdominal Pain- He encouraged me to remain on the fentanyl patch (a low-level narcotic) that basically takes the edge off of my pain, making life a little more tolerable. It doesn't make me dumber or have any other frustrating side effects, which I enjoy. He's also said that I can continue on vicodin until surgery. I'm trying not to take this very often, just because it makes everything a little foggy. He's also given me some more anti-nausea meds, nothing new--just ones that I've been on for several years now.
3. In addition to all of those things, one of his nurses will set up a standing order for me to receive fluids at a clinic in Issaquah. This is going to be terrific because I won't have to visit the ER when I'm dehydrated, and hopefully the additional fluids will help me get back on my feet a bit. He's hoping to avoid putting another picc line in (as am I), and we'll just wait and see how often I end up going in for fluids.
4. Blood work: While I was in the ER on 11/16, they had taken a blood draw and run a million tests on it. That day, my potassium levels were low, and my liver enzymes were almost twice the "normal" number. He asked if the ER had told me anything about that, and if they'd suggested any treatment options. I told them that the ER said my blood work was all normal...interesting. So, he had me go to the lab to have another sample drawn to compare. Hopefully my numbers will be better this time, as potassium is an electrolyte level that affects my heart.
5. I had a little bit of a rough experience with one of the lab techs there. When I went in, I told her that I had veins that look good, but really roll. And that sometimes once you get blood, it just decides to stop pumping, so that I end up getting stuck 5 times before they get all they need. She had me roll up my sleeves, and looked at both arms. I suggested that she use a butterfly needle, as that has a tendency to work better. She insisted that she didn't need to because my veins all looked really good. (I sat there, slightly frustrated, but tried to hold my tongue.) She took out several vials that she needed to fill, grabbed a normal "grown-ups sized" needle, and went for it. Interestingly enough, she was able to hit the vein right away, at the same time bragging to me about how "the other lab techs must've not known what they were doing, and had no business telling me that my veins were bad." And then...nothing. She got about 1/2 of the smallest vial filled, and then (surprise) my vein quit pumping. I wasn't sure if she'd even gotten enough to do the test, and was wondering if she'd stick with her original story about how amazing she was--or if she'd have to poke me again because she didn't listen to me. She opted to not say another word, bandaged my arm, and told me to have a nice day. Hmph.
Overall, I'm trying to be optimistic about the future. I'm still feeling bad (worse than normal), but it seems that my weight loss has leveled out for the moment. I've kept the same weight for several days in a row now. During my abdominal exam, Dr. P was concerned about impacted bowel in my ascending colon, as my belly was noticeably distended on the right side. He prescribed an over-the-counter laxative called magnesium citrate, which I am enjoying for breakfast this morning. I put a straw into the beverage to trick myself into believing that it tasted good. I'm pretending it's like a pomegranate margarita. It's a stretch, but it helps me to envision I'm laying on the beach in the warmth of the sun. :)
Thanks God, for imagination. :)
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