Things change so quickly.
The round-the-clock diuretics seem to be working, fluid is getting through the plumbing much better. They put compression stockings back on Dan's legs to force the fluid up and out, which is working but they are a little painful, so they plan to switch to ace bandages this afternoon. And he is getting used to his low-sodium diet.
Dan's heart went back into afib last night while he was sleeping. This is the first time it's done this during rest, the other times it was during exertion. So, the teams have decided to postpone the ERCP (procedure to remove the bile duct stent) in favor of the cardiology team's recommendation to first do a cardiac ablation and pacemaker implant (www.heartrhythmcenter.com/myweb2/av_nodal_ablation2.htm has a good explanation of this.) Surgery is scheduled for Monday afternoon, we don't know the time yet, and it will take a few hours. This is a fairly common procedure and is minimally invasive, and hopefully once his heart is pumping normally that it will help the kidneys along. And yes, the pacemaker will be permanent, the battery will need to be replaced, usually after 5+ years, depending on the rate it "paces".
Thanks for your prayers for Dan tomorrow, as always. Life is hard, but God is good.
Aloha,
Debbie and Dan
Sunday, November 16, 2008
Thursday, November 13, 2008
Thursday, Nov. 13 - the saga continues
Dan is still in Mayo. He is breathing better, and his new liver is working well, that's the good news.
Yesterday's chest xray showed his lungs are worse, meaning more fluid surrounding the lungs. This morning's labs showed elevated heart enzymes, elevated creatinine level. So 3 teams are working on this - liver transplant, cardiology, and nephrology (kidneys).
The main problem keeping Dan in the hospital is the fluid that won't go away, resulting in shallow breathing, swelling in his abdomen, legs and feet. Dan's kidneys are not functioning well, and we were told this morning that he has had kidney disfunction even before transplant, which makes sense since he had so much leg and feet swelling for so long. There are several solutions to this problem, one they tried on Sunday, to drain the fluid via thorocentesis and pericentesis. The doctors do not want to continue this, as it is risky for Dan's liver. Another solution is meds, this is the plan now, to give Dan a high dose of lasix round the clock now for 24 hours, along with the metolazone, these work in different parts of the kidney. We also learned that Dan's kidney problem may not be "cured" even after the fluid is under control. Which brings me to another solution - dialysis and kidney transplant - they tell us this would be considered if nothing else worked and it is a decision to be made "way down the road." Let's hope so. The doctor said 5-10% of liver transplant patients need this done, since the liver disease can cause kidney problems.
The echocardiogram showed Dan's heart is only pumping at 35% (normal is 55-60%) so that's not at a danger level but it is a decrease. This could be caused by the anti-rejection meds Dan is taking, along with the stress and trauma of Dan's transplant. The cardiologists will follow on Dan's labs, they are more concerned with getting the fluid moving through the plumbing, and more tests may be needed once this is better, including a nuclear stress test.
The liver doctors changed one of Dan's anti-rejection meds (cyclosporin) to prograf last night, in case the cyclosporin is hurting the kidneys. Both can do so, but prograf is less likely to do so, but it has other side effects including confusion, so I'll be watching this carefully.
Dan and I both were busted yesterday for Dan eating way too much sodium. He needs to be on a low-sodium diet, which means less than 2 grams (2,000 mgs) of sodium a day, or about 600 mgs. per meal. I was eating salad with honey mustard dressing last night and noticed the sodium in the dressing was around 550 mgs. by itself, that puts this in perspective. Or as Dan says, he is allowed to eat air. The dietician gave me a booklet on how to cook and eat with this limitation, and the nurse is examing everything he eats and drinks now. Between this dietary restriction and others for transplant patients, life as we knew it is now over - aloha fast food, pizza, shoyu, soda, salad bars, salsa - and hello to no-salt or low-salt everything, Mrs. Dash seasonings, and homemade meals.
All this to say they are getting Dan healthy enough to do another procedure on Monday, to remove the stent they put in his bile duct about a month ago, and put in another stent if needed. So not sure if Dan will get to come home before that.
This is all pretty depressing, and Dan and I have been praying and trying to encourage each other. Dan occasionally talks in his sleep, most of the time I ignore it, but last night I enjoyed listening to him PRAY in his sleep! He doesn't remember it, but I'll never forget it.
A BIG mahalo to our ohana in Hawaii (Roger, Joy, and Clyde) for the surprise package from Bath and Body Works - bubble bath, here I come!
Aloha,
Debbie and Dan
Yesterday's chest xray showed his lungs are worse, meaning more fluid surrounding the lungs. This morning's labs showed elevated heart enzymes, elevated creatinine level. So 3 teams are working on this - liver transplant, cardiology, and nephrology (kidneys).
The main problem keeping Dan in the hospital is the fluid that won't go away, resulting in shallow breathing, swelling in his abdomen, legs and feet. Dan's kidneys are not functioning well, and we were told this morning that he has had kidney disfunction even before transplant, which makes sense since he had so much leg and feet swelling for so long. There are several solutions to this problem, one they tried on Sunday, to drain the fluid via thorocentesis and pericentesis. The doctors do not want to continue this, as it is risky for Dan's liver. Another solution is meds, this is the plan now, to give Dan a high dose of lasix round the clock now for 24 hours, along with the metolazone, these work in different parts of the kidney. We also learned that Dan's kidney problem may not be "cured" even after the fluid is under control. Which brings me to another solution - dialysis and kidney transplant - they tell us this would be considered if nothing else worked and it is a decision to be made "way down the road." Let's hope so. The doctor said 5-10% of liver transplant patients need this done, since the liver disease can cause kidney problems.
The echocardiogram showed Dan's heart is only pumping at 35% (normal is 55-60%) so that's not at a danger level but it is a decrease. This could be caused by the anti-rejection meds Dan is taking, along with the stress and trauma of Dan's transplant. The cardiologists will follow on Dan's labs, they are more concerned with getting the fluid moving through the plumbing, and more tests may be needed once this is better, including a nuclear stress test.
The liver doctors changed one of Dan's anti-rejection meds (cyclosporin) to prograf last night, in case the cyclosporin is hurting the kidneys. Both can do so, but prograf is less likely to do so, but it has other side effects including confusion, so I'll be watching this carefully.
Dan and I both were busted yesterday for Dan eating way too much sodium. He needs to be on a low-sodium diet, which means less than 2 grams (2,000 mgs) of sodium a day, or about 600 mgs. per meal. I was eating salad with honey mustard dressing last night and noticed the sodium in the dressing was around 550 mgs. by itself, that puts this in perspective. Or as Dan says, he is allowed to eat air. The dietician gave me a booklet on how to cook and eat with this limitation, and the nurse is examing everything he eats and drinks now. Between this dietary restriction and others for transplant patients, life as we knew it is now over - aloha fast food, pizza, shoyu, soda, salad bars, salsa - and hello to no-salt or low-salt everything, Mrs. Dash seasonings, and homemade meals.
All this to say they are getting Dan healthy enough to do another procedure on Monday, to remove the stent they put in his bile duct about a month ago, and put in another stent if needed. So not sure if Dan will get to come home before that.
This is all pretty depressing, and Dan and I have been praying and trying to encourage each other. Dan occasionally talks in his sleep, most of the time I ignore it, but last night I enjoyed listening to him PRAY in his sleep! He doesn't remember it, but I'll never forget it.
A BIG mahalo to our ohana in Hawaii (Roger, Joy, and Clyde) for the surprise package from Bath and Body Works - bubble bath, here I come!
Aloha,
Debbie and Dan
Tuesday, November 11, 2008
Still in Mayo
Dan is still in Mayo, we hope he gets to come home tomorrow. Sunday night after he moved to a room back on 3West, they did the thorocentesis and took out a lot of fluid from the lining of the left lung. The rest of the night was miserable for Dan, he coughed all night, apparently the lung was a little compressed from the pressure of the fluid and once it opened up there was plenty of fluid in his bronchial tubes. The pulmonary guy gave him an albuterol breathing treatment to get the tubes opened up. Once he stopped coughing around 6am, he got a little sleep, and later on the morning he felt better and was breathing better.
So now they are trying to figure out why the kidneys are not functioning well. He didn't have any problems pre-transplant other than a kidney stone, so we know it's from the transplant, these organs aren't fully "awake" yet. It's a vicious cycle. The kidneys need plenty of blood flow and lots of fluid from water we drink to work well. Without those, the kidneys get sleepy and fluid we consume needs to go somewhere, so it fills up either the tissues or the blood vessels. Healthy kidneys can get working again when we drink more water, that's why we run to the bathroom more, which is a good thing unless you're stuck in traffic on the H-1. Dan's kidneys aren't healthy so he has swelling in his feet and legs, tummy, around the lungs (which they drained on Sunday), even his scrotum (don't tell him I told you this one). For Dan, they don't want him drinking more than 1 bottle of water a day, they want to treat his swelling with meds, like albumin (draws the fluid from the tissues to the vessels) and then lasix and another diuretic I can't remember the name, that should get the fluids excreted through the kidneys and bladder. Please pray the doctors can figure out why the kidneys and bladder are still sleeping and this will be an easy and quick fix. With his legs and feet so swollen, it's hard for Dan to walk and he needs to do this daily to get stronger.
Aloha,
Debbie and Dan
So now they are trying to figure out why the kidneys are not functioning well. He didn't have any problems pre-transplant other than a kidney stone, so we know it's from the transplant, these organs aren't fully "awake" yet. It's a vicious cycle. The kidneys need plenty of blood flow and lots of fluid from water we drink to work well. Without those, the kidneys get sleepy and fluid we consume needs to go somewhere, so it fills up either the tissues or the blood vessels. Healthy kidneys can get working again when we drink more water, that's why we run to the bathroom more, which is a good thing unless you're stuck in traffic on the H-1. Dan's kidneys aren't healthy so he has swelling in his feet and legs, tummy, around the lungs (which they drained on Sunday), even his scrotum (don't tell him I told you this one). For Dan, they don't want him drinking more than 1 bottle of water a day, they want to treat his swelling with meds, like albumin (draws the fluid from the tissues to the vessels) and then lasix and another diuretic I can't remember the name, that should get the fluids excreted through the kidneys and bladder. Please pray the doctors can figure out why the kidneys and bladder are still sleeping and this will be an easy and quick fix. With his legs and feet so swollen, it's hard for Dan to walk and he needs to do this daily to get stronger.
Aloha,
Debbie and Dan
Sunday, November 9, 2008
Back at Mayo
Dan has had a hard time breathing the past 2 days, more swelling, and drinking a lot of water without much output. So we called the transplant coordinator this morning and she spoke to the doctor and told us to go in to the ER. After labs, a bladder ultrasound and a chest xray, they decided to keep him overnight. They are going to do another thoracentesis and parecentesis, but prior to that they will give him blood plasma to amp up his platelet count in hopes of not too much bleeding from those procedures. They put in a foley catheter to help the bladder along to get rid of the large amount of fluid there. The kidney doctor will visit tomorrow also. And his labs showed very low sodium and pretty high potassium, both of which may be caused by the diuretics but they need to watch his electrolites carefully as this could signal a rejection coming on, and don't worry - they would adjust his anti-rejection meds if this happens.
The doctors tell us it is not that unusual for a transplant patient to come back in the hospital a few times after the initial discharge to get things regulated. Hearing that didn't make it any easier on Dan, though. I'm home for a short time now to blog, pick up his contac case and glasses and ipod, and then head back. My heart hurts for Dan that he has to be back there, but he will go back to 3West where we know all the nurses so that will be nice, plus selfishly speaking...I will get a little reprieve from lifting Dan. If anyone knows any good stretching exercises for my back and legs, let me know.
TTFN ("ta-ta for now" as Tigger says to Pooh),
Debbie and Dan
The doctors tell us it is not that unusual for a transplant patient to come back in the hospital a few times after the initial discharge to get things regulated. Hearing that didn't make it any easier on Dan, though. I'm home for a short time now to blog, pick up his contac case and glasses and ipod, and then head back. My heart hurts for Dan that he has to be back there, but he will go back to 3West where we know all the nurses so that will be nice, plus selfishly speaking...I will get a little reprieve from lifting Dan. If anyone knows any good stretching exercises for my back and legs, let me know.
TTFN ("ta-ta for now" as Tigger says to Pooh),
Debbie and Dan
Saturday, November 8, 2008
Saturday, Nov. 8
Sorry I haven't blogged in a few days. Having Dan home is great, however taking care of him is an all-day and all-night activity. I'm getting pretty good at helping lift Dan out of a chair to his walker, who'd have thought someone my size (5'3") could deadlift a 6'4" guy, thanks to something called a posey, a sturdy canvas strap that tightly belts around Dan's chest. And a huge thanks to Dan's dad who helps me lift Dan when needed.
Like today, Dan started walking with his walker the length of the lanai, about 100 feet from end to end, and he made it one round trip for 200 feet, probably the longest he's walked in a long while. The rest of the day, his legs were very wobbly and we were so thankful Dan's dad was here to help.
And a special thanks to Dan's mom for "encouraging" him today - "you go, girl!"
I gave Dan his first insulin injection this evening, not really his first but first since he got home. He's only diabetic since transplant, this will go away hopefully after he stops taking prednisone, but until then we check blood sugar before every meal, and if the count is over 150, he gets an injection based on a "sliding scale". We opted for the insulin pen rather than a syringe, my mom uses the pen and it seemed much easier to do and less scary to me than a syringe. Dan said he didn't even feel the needle or the insulin, so I hope I did it right.
By the way, last Thursday's doctor appt. went well and his labs were good, his kidney function is still not 100% so they scheduled a follow-up with the kidney doctor a week from Monday. We go back to Mayo on Tuesdays and Thursdays for the round of labs, doctors, PT and OT, squeezing in meds and blood sugar tests when we can.
Have a wonderful day of worship tomorrow and remember...you can do ALL things through Christ who strengthens you (paraphrase of Philippians 4:13 NKJV, emphasis mine).
Aloha from the desert,
Debbie and Dan
Like today, Dan started walking with his walker the length of the lanai, about 100 feet from end to end, and he made it one round trip for 200 feet, probably the longest he's walked in a long while. The rest of the day, his legs were very wobbly and we were so thankful Dan's dad was here to help.
And a special thanks to Dan's mom for "encouraging" him today - "you go, girl!"
I gave Dan his first insulin injection this evening, not really his first but first since he got home. He's only diabetic since transplant, this will go away hopefully after he stops taking prednisone, but until then we check blood sugar before every meal, and if the count is over 150, he gets an injection based on a "sliding scale". We opted for the insulin pen rather than a syringe, my mom uses the pen and it seemed much easier to do and less scary to me than a syringe. Dan said he didn't even feel the needle or the insulin, so I hope I did it right.
By the way, last Thursday's doctor appt. went well and his labs were good, his kidney function is still not 100% so they scheduled a follow-up with the kidney doctor a week from Monday. We go back to Mayo on Tuesdays and Thursdays for the round of labs, doctors, PT and OT, squeezing in meds and blood sugar tests when we can.
Have a wonderful day of worship tomorrow and remember...you can do ALL things through Christ who strengthens you (paraphrase of Philippians 4:13 NKJV, emphasis mine).
Aloha from the desert,
Debbie and Dan
Wednesday, November 5, 2008
First day home, and LInes from Daniel's Den
Today was Dan's first full day home from the hospital. He enjoyed sleeping in a more comfortable bed with me, his wife (giggle). He really enjoyed getting to eat whatever he wanted, including tacos and bean burrito from Taco Bell for lunch. He tried to start getting on a schedule, one he'll need to follow the rest of his life. There are a few extra chores we need to do for the first few months or so. It was a non-stop day of taking about 15 pills at 8am and 8pm, meals, and a lot of effort just getting to the bathroom with his walker, sometimes it took both Dan's dad and me to get him up from the chair to his walker. We also had lots of phone calls, a rental wheelchair delivered and I had to learn how to get Dan into the chair and then how to fold it up and hoist it into the back of the van. We should only need the chair for going to church, the mall, etc.; it doesn't fit in the house doorways and Mayo has a "garage" of wheelchairs plus volunteers who greet you when you drive up with a wheelchair and a smile. All in all, we survived the first day, with a lot of worrying and nagging on my part, and Dan patting me on the back saying "relax".
Check out Dan's new post on his blog www.linesfromdanielsden.blogspot.com.
Tomorrow we go back to Mayo for a full day of labs, visits with the post-transplant coordinator and doctors, OT and PT. We'll be there from 7:05am thru 2pm, we have short breaks and a lunch break and the cafeteria there is great.
Stay tuned,
Debbie and Dan
Check out Dan's new post on his blog www.linesfromdanielsden.blogspot.com.
Tomorrow we go back to Mayo for a full day of labs, visits with the post-transplant coordinator and doctors, OT and PT. We'll be there from 7:05am thru 2pm, we have short breaks and a lunch break and the cafeteria there is great.
Stay tuned,
Debbie and Dan
Tuesday, November 4, 2008
Out of the hospital!
It finally happened...Dan was discharged from the hospital today, November 4. It was a very long day of meetings with everyone - doctors, PT, OT, endocrinologist, post-transplant coordinator (3-hrs and more to come on Thursday), then the nurse has to review a 20+page discharge paper and we sign when she's done and most of this was repeat from the previous meetings. The icing on the cake was getting to hear a noon-time concert by Vicki and her combo - she's a professional jazz singer and fellow pastor's wife and she has visited Dan faithfully several times a week to fellowship and sing wonderful jazz numbers with Dan "be-bopping" along with her. Dan is pretty tired but glad to be out of the hospital. He had some strong mixed feelings leaving the hospital, both happy and sad and emotional, as the Mayo staff on 3West and 3East have become family. And just getting around the house with his walker and in and out of chairs takes a lot of energy, more than we realized, so recovery will continue. Dan is also anxious to post a new blog entry to his 'Lines from Daniel's Den', so keep watch!
Soaring again,
Debbie and Dan
Soaring again,
Debbie and Dan
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