Last week Wednesday, I got a bunch of blood drawn for a battery of tests that were ordered by the Gastroenterologist and we have some good results!
First, the alk phos was up to 2032 which was expected but makes the drop to 1780 this last Monday a bit better than I had originally thought. I am negative for Hepatitis B and C which is good but I was positive for actin antibody and I don't really know what that means.
I tested positive for the hereditary hemocromatosis which is the gene for iron overload. It does say that I am likely an unaffected carrier since I only had one of the three mutations but it states that "a small number of people who may have a single copy of H63D ar actually affected. The Diagnosis of HH should include other clinical clinical findings and ... serum ferritin studies." The next test in line was serum ferritin and it was 2084 with an expected range of 30-400.
These results, along with the drop in markers when I stopped taking the iron almost certainly mean that I have iron overload. This is wonderful in that we can get my liver back into shape by removing the iron from my daily meds. The down side is that I was on iron because of the anemia caused by my kidney disease. I don't know how we will balance this but at least now we know what is going on and can formulate an attack!
With these results, I can expect continued improvement in the liver markers and that means I will be talking to Dr. Boudreaux in the next couple of weeks and can hope for surgery in late May. It is such a relief to know the end is in sight. These last weeks of continued uncertainty have been quite brutal and I am optimistic for the first time in quite a while.
Wednesday, April 20, 2016
Tuesday, April 19, 2016
Liver Limbo continues?
Got my blood test results back today and my alkaline phosphatase dropped! It didn't drop very much (1904 to 1786) but it was a drop. At the same time, my AST dropped almost back to the high end of normal and the ALT dropped by half (still way above normal). What changed? I dropped the iron and the vitamin D starting on Wednesday night.
There is a condition called iron overload that I may be experiencing and it usually expresses itself with elevated liver markers and can be caused by taking supplemental iron. It can be a genetic condition or can be an induced situation as well.
Last week, I also saw a physician's assistant at my gastroenterologist and they drew 5 vials of blood to try and rule out several possibilities and she was the one who suggested iron overload. I haven't heard anything from those results but am hopeful that they may reinforce the iron overload theory. I also have an ultrasound of the liver on Thursday with the hopes that it may be able to identify any issues with bile duct problems or other issues.
We are continuing on with the same 1800 calorie TPN and 750ml of hydration/day. I had hoped for a greater reduction in the alk phos this week and would have increased the calories if that occurred but that is not the case.
As to surgery? That is a ways off right now. I need to see a trend of improvement in the liver markers before Dr. Boudreaux would be willing to talk about things. That means we have at least two more weeks before contacting Dr. Boudreaux again. If we schedule surgery, it would probably then be a couple of weeks later which puts us in late May or June, just like last year.
No particular food cravings this past week but I am always thinking of Tex-mex food. I would love some tacos or fajitas. A ground beef chimichanga with lots of green chili, sour cream, lettuce and tomatoes would be wonderful. Chips and salsa, tamales, and chicken, beef and cheese enchiladas all sound wonderful as well.
Stephanie and I have talked about taking a trip to Vegas after I am able to eat again and hitting up lots of great restaurants along with taking in some shows for a weekend. Having something to look forward to is wonderful although it seems so far away at this point.
That's it for now until I get more blood test results or some conclusive information...
There is a condition called iron overload that I may be experiencing and it usually expresses itself with elevated liver markers and can be caused by taking supplemental iron. It can be a genetic condition or can be an induced situation as well.
Last week, I also saw a physician's assistant at my gastroenterologist and they drew 5 vials of blood to try and rule out several possibilities and she was the one who suggested iron overload. I haven't heard anything from those results but am hopeful that they may reinforce the iron overload theory. I also have an ultrasound of the liver on Thursday with the hopes that it may be able to identify any issues with bile duct problems or other issues.
We are continuing on with the same 1800 calorie TPN and 750ml of hydration/day. I had hoped for a greater reduction in the alk phos this week and would have increased the calories if that occurred but that is not the case.
As to surgery? That is a ways off right now. I need to see a trend of improvement in the liver markers before Dr. Boudreaux would be willing to talk about things. That means we have at least two more weeks before contacting Dr. Boudreaux again. If we schedule surgery, it would probably then be a couple of weeks later which puts us in late May or June, just like last year.
No particular food cravings this past week but I am always thinking of Tex-mex food. I would love some tacos or fajitas. A ground beef chimichanga with lots of green chili, sour cream, lettuce and tomatoes would be wonderful. Chips and salsa, tamales, and chicken, beef and cheese enchiladas all sound wonderful as well.
Stephanie and I have talked about taking a trip to Vegas after I am able to eat again and hitting up lots of great restaurants along with taking in some shows for a weekend. Having something to look forward to is wonderful although it seems so far away at this point.
That's it for now until I get more blood test results or some conclusive information...
Tuesday, April 12, 2016
Liver Limbo Continues
Well, the Ambien wasn't it. It was somewhat of a long shot but it definitely was not the reason for my liver numbers continuing to increase. As you recall, two weeks ago the alkaline phosphatase was 1147, a week ago, it was 1198, and this week, a stunning 1900. What the hell? My bilirubin is just 1.2 but that alkaline phosphatase is just unreal.
What is left? Well, I take 650mg of sodium bicarb each morning and night and I received that when I was in the hospital. I am taking 75mg of iron which should not be a problem and I am taking 5000 units of Vitamin D which also should not be an issue. Finally, I am taking 40mg of lasix every morning but lasix is given to people with kidney and liver failure all the time so it should not be the cause.
What is going on? Why won't these liver number come back to earth? They dropped so nicely when I was in the hospital that we were sure it had to be something different that was going on at home compared to the hospital but we can't figure it out. The TPN formula and rate is the same, the fluids are similar. I am actually taking fewer medicines that I was in the hospital. I am not jaundiced and don't feel ill in any fashion other than the fatigue and abdominal cramps (left side, not liver side).
So, I am trying to find out if there is a hepatologist (liver doctor) I should see or my GI doc or what. This is just starting to be crazy. Every week my liver acts up is another week I am delayed for surgery. Another week I don't eat. Another week of the isolation not eating brings with it.
Think about it. Someone gets a promotion? Go out to eat to celebrate! Daughter graduating from High School? Senior Luncheon! Someone having a birthday? Cake and ice cream! Leaving work early for drinks? Lets have some appetizers with that! Not eating kinda puts a damper on the celebratory, recreational, or social activity of eating...
The food craving for this week is nuts. I don't like many nuts but pistachios along with cashews (not really nuts but a seed) are the foods that have been running through my mind. There are other things but those two have been the regular visitors this week. I still get small amounts of juice (vented through the PEG tube) and the occasional otter pop but nothing of substance.
What is left? Well, I take 650mg of sodium bicarb each morning and night and I received that when I was in the hospital. I am taking 75mg of iron which should not be a problem and I am taking 5000 units of Vitamin D which also should not be an issue. Finally, I am taking 40mg of lasix every morning but lasix is given to people with kidney and liver failure all the time so it should not be the cause.
What is going on? Why won't these liver number come back to earth? They dropped so nicely when I was in the hospital that we were sure it had to be something different that was going on at home compared to the hospital but we can't figure it out. The TPN formula and rate is the same, the fluids are similar. I am actually taking fewer medicines that I was in the hospital. I am not jaundiced and don't feel ill in any fashion other than the fatigue and abdominal cramps (left side, not liver side).
So, I am trying to find out if there is a hepatologist (liver doctor) I should see or my GI doc or what. This is just starting to be crazy. Every week my liver acts up is another week I am delayed for surgery. Another week I don't eat. Another week of the isolation not eating brings with it.
Think about it. Someone gets a promotion? Go out to eat to celebrate! Daughter graduating from High School? Senior Luncheon! Someone having a birthday? Cake and ice cream! Leaving work early for drinks? Lets have some appetizers with that! Not eating kinda puts a damper on the celebratory, recreational, or social activity of eating...
The food craving for this week is nuts. I don't like many nuts but pistachios along with cashews (not really nuts but a seed) are the foods that have been running through my mind. There are other things but those two have been the regular visitors this week. I still get small amounts of juice (vented through the PEG tube) and the occasional otter pop but nothing of substance.
Tuesday, April 5, 2016
Liver limbo
When I left the hospital two weeks ago, my liver numbers had improved significantly. I entered the hospital with an alkaline phosphotase level of 650. Two days later, it was 750 and a week after that, it hit 1147 and is 1198 now. Since the numbers dropped so rapidly when I was in hospital, there has to be something different at home that is driving the numbers back up.
One of the prescription meds I take at home but was not taking in the hospital was discontinued last week in the hope that it was causing the rising numbers. Discontinuing that drug seems to have reduced the rate of increase in the numbers but it has not reversed it. Another drug I am taking that I wasn't taking in the hospital will be discontinued this week to see if it is the cause. Hopefully that is what it is because I am getting tired of the delays.
I am currently getting 1850 calories/day in the TPN. We could raise that but not while we are trying to track down the reason for the liver disfunction. We hopefully will be reducing the amount of additional IV fluids I am getting as the swelling in my feet and legs is getting fairly significant.
The food cravings continue but I do get to have some juice or other drinks here or there, I just end up venting most of it into the toilet through the PEG tube. It is frustrating not to be able to use those calories but a few ounces of grape juice or a popsicle does at least give me a small amount of oral satisfaction.
The big question is "When is surgery?" and the answer is who knows. Until we get this liver issue under control, there is not much point in thinking about surgery. Dr. Boudreaux wanted the liver to be managed well and to have me stronger but neither of those are happening now. Right now, I imagine I won't see the operating room till sometime late in May at best.
I am continuing to hang out on the couch, watching TV, reading, and browsing the web. I usually take a nap every day and am just waiting out the clock now, hoping for these liver numbers to come back in line.
One of the prescription meds I take at home but was not taking in the hospital was discontinued last week in the hope that it was causing the rising numbers. Discontinuing that drug seems to have reduced the rate of increase in the numbers but it has not reversed it. Another drug I am taking that I wasn't taking in the hospital will be discontinued this week to see if it is the cause. Hopefully that is what it is because I am getting tired of the delays.
I am currently getting 1850 calories/day in the TPN. We could raise that but not while we are trying to track down the reason for the liver disfunction. We hopefully will be reducing the amount of additional IV fluids I am getting as the swelling in my feet and legs is getting fairly significant.
The food cravings continue but I do get to have some juice or other drinks here or there, I just end up venting most of it into the toilet through the PEG tube. It is frustrating not to be able to use those calories but a few ounces of grape juice or a popsicle does at least give me a small amount of oral satisfaction.
The big question is "When is surgery?" and the answer is who knows. Until we get this liver issue under control, there is not much point in thinking about surgery. Dr. Boudreaux wanted the liver to be managed well and to have me stronger but neither of those are happening now. Right now, I imagine I won't see the operating room till sometime late in May at best.
I am continuing to hang out on the couch, watching TV, reading, and browsing the web. I usually take a nap every day and am just waiting out the clock now, hoping for these liver numbers to come back in line.
Saturday, March 26, 2016
Hunger and Fatigue, my new constant companions
I have been home from the hospital for a week now and am starting to get the hang of this new PEG tube. I am finally figuring out how to drain my stomach contents easily and am able to avoid vomiting most of the time.
I believe I am now fully obstructed. I occasionally have a small amount of juice, soda, or other drink (think 4oz or less) and that small amount of drink has been making a return trip back out the PEG tube rather than trying to process through my digestive tract. I am able to consume small ice chips throughout the day so this occupies my mouth and stomach to a limited extent.
I don't know exactly how many calories I am getting in TPN right now (will check next time I speak with the nutritionist) but think it is somewhere in the area of 2000 calories. I then get an additional one liter of saline fluid infused to prevent the dehydration that sent me to the hospital before. I am retaining fluid now so we may need to adjust the amount of additional saline that I get but at least I am not getting dehydrated.
Dr. Boudreaux wants to see my numbers improve and they are indeed. I have looked at all the liver numbers and they are on a very constant track back to 'normal' for me. My kidney numbers have also returned to my baseline values. This is good news because there always was the worry that a significant amount of real damage had occurred a couple of weeks ago but that seems to be in the past now.
The other thing Dr. Boudreaux wants before surgery is "He needs to be able to walk around, up the whole day." I can certainly walk around, not far and not a lot but I can walk around. As to up all day, I normally take a nap every day and I don't know if this will be a strike against me or not.
Food smells so good. I am almost to the point where I dread mealtime because I know that my nose is going to be picking up all these wonderful scents and will have no chance to satisfy them. I know that eating anything now will not happen until I have surgery unless I am willing to just vomit up the food I eat later and that is not fun.
It isn't limited to food that smells good either. I have been craving clementines and the burst of juice when you bite into a wedge of fruit. The usual other suspects are there as well. I have been thinking of tacos and chips with salsa. I have been craving that feeling of refreshment when you drink half a can of soda or other liquid after working hard in the heat and how it just pulses through your body.
I want sausage and bacon with either french toast or pancakes (blueberry?) along with lots of butter and real maple syrup. Spaghetti and lasagna (the good stuff my wife makes) along with garlic bread with real butter sounds fantastic. I want a Chipotle fajita burrito with chicken, chili-corn salsa, pico de gallo and sour cream with a large root beer to drink.
There are some sweets as well. Creme brulee always tastes so good and Stephanie and I would occasionally stop by the Bone Fish Grill just to have one for desert with some fresh berries on top. Speaking of fresh berries, just picked strawberries, bursting with flavor, chopped over some ice cream or just on their own. Summer grapes and watermelon sound wonderful and I am looking forward to fruit salads with lots of fresh fruits. Of course, donuts are on the list with a French Crueler or a Boston Cream from Duncan Donuts making the list.
When do I get to eat again? I don't know. We are supposed to touch base with Dr. Boudreaux around April 1st and update him on status so maybe we will get some plans at that point. I just fear this getting pushed off further and further, having to live like this longer and longer. My daughter, River, graduates this year and I fear missing her graduation in mid May along with her and my youngest son's birthdays in mid April. I want the surgery but I don't want to miss out and, obviously, I don't want to die either.
I believe I am now fully obstructed. I occasionally have a small amount of juice, soda, or other drink (think 4oz or less) and that small amount of drink has been making a return trip back out the PEG tube rather than trying to process through my digestive tract. I am able to consume small ice chips throughout the day so this occupies my mouth and stomach to a limited extent.
I don't know exactly how many calories I am getting in TPN right now (will check next time I speak with the nutritionist) but think it is somewhere in the area of 2000 calories. I then get an additional one liter of saline fluid infused to prevent the dehydration that sent me to the hospital before. I am retaining fluid now so we may need to adjust the amount of additional saline that I get but at least I am not getting dehydrated.
Dr. Boudreaux wants to see my numbers improve and they are indeed. I have looked at all the liver numbers and they are on a very constant track back to 'normal' for me. My kidney numbers have also returned to my baseline values. This is good news because there always was the worry that a significant amount of real damage had occurred a couple of weeks ago but that seems to be in the past now.
The other thing Dr. Boudreaux wants before surgery is "He needs to be able to walk around, up the whole day." I can certainly walk around, not far and not a lot but I can walk around. As to up all day, I normally take a nap every day and I don't know if this will be a strike against me or not.
Food smells so good. I am almost to the point where I dread mealtime because I know that my nose is going to be picking up all these wonderful scents and will have no chance to satisfy them. I know that eating anything now will not happen until I have surgery unless I am willing to just vomit up the food I eat later and that is not fun.
It isn't limited to food that smells good either. I have been craving clementines and the burst of juice when you bite into a wedge of fruit. The usual other suspects are there as well. I have been thinking of tacos and chips with salsa. I have been craving that feeling of refreshment when you drink half a can of soda or other liquid after working hard in the heat and how it just pulses through your body.
I want sausage and bacon with either french toast or pancakes (blueberry?) along with lots of butter and real maple syrup. Spaghetti and lasagna (the good stuff my wife makes) along with garlic bread with real butter sounds fantastic. I want a Chipotle fajita burrito with chicken, chili-corn salsa, pico de gallo and sour cream with a large root beer to drink.
There are some sweets as well. Creme brulee always tastes so good and Stephanie and I would occasionally stop by the Bone Fish Grill just to have one for desert with some fresh berries on top. Speaking of fresh berries, just picked strawberries, bursting with flavor, chopped over some ice cream or just on their own. Summer grapes and watermelon sound wonderful and I am looking forward to fruit salads with lots of fresh fruits. Of course, donuts are on the list with a French Crueler or a Boston Cream from Duncan Donuts making the list.
When do I get to eat again? I don't know. We are supposed to touch base with Dr. Boudreaux around April 1st and update him on status so maybe we will get some plans at that point. I just fear this getting pushed off further and further, having to live like this longer and longer. My daughter, River, graduates this year and I fear missing her graduation in mid May along with her and my youngest son's birthdays in mid April. I want the surgery but I don't want to miss out and, obviously, I don't want to die either.
Saturday, March 19, 2016
Look ma! New tubes!
I haven't written since before I entered the hospital and that is because I have been fairly down physically and emotionally. Upon entering the hospital last Tuesday the 8th, a number of things have happened and I think Stephanie has kept most of you up to date but here is my take on the last 10 days.
On Tuesday the 8th, we eventually got through the ER and ended up admitted as we expected. They started me on IV fluids and that helped my overall situation considerably. Then, we me Dr. Doom. AKA Dr. Murphy, the on-call oncologist. He came in and gave one of the most dire evaluations I have ever gotten. He even went as far as to say that I have had a good run of 15 years with this disease and it was time to just let it go. He said I was in multiple organ failure and there was little hope of any recovery, particularly for my liver.
Well, Surprise! Not dead yet. This did put Stephanie and I through the emotional wringer and we really did start having the talk of 'what if this is it?' amongst other conversations. We continued our time in the hospital, getting fluids and slowly worked back up to 'normal' almost dead (not even mostly dead, just almost dead).
Stephanie got ahold of Dr. Boudreaux in NOLA and his big concern was the liver and was cautiously optimistic that I could pull out of it but feels that I have just one big surgery left in me. We briefly discussed a multi-viceral transplant but, again, it was determined that I am not a candidate for that procedure.
With the NG tube inserted on Tuesday, we had begun to decompress my bowels and over the next couple of days, several liters of fluid was pulled from my digestive tract but no progress was made on passing stool. Finally, on Monday, we decided to have a shot at putting in a PEG-tube to my stomach so that we can use it to decompress the bowel rather than with the NG tube. Well, the GI doc said he could not get it but thought that an interventional radiologist might be able to.
The IR doc looked at some scans and said that he saw a 1cm hole where there was a possibility of putting in a PEG tube and we then transferred to Penrose hospital where they have an IR room with a CT that they can use during the procedure. After a two hour procedure on Thursday, I now had a tube in my abdomen that can drain the stomach. It has continued to drain fluid and has probably done over a liter so far but much of that is 'fresh' gastric juices.
What we have done is now buy some time. I expect to be released on the 19th where we will go home and attempt to finish getting my liver healthy. Once it is healthy, surgery should commence soon and I will have my last attempt at extending my life with this disease.
What will this next surgery buy me? I am hoping for a few years. If it is successful, it will just be another matter of waiting for the next bowel obstruction and then we will be in the end game. I don't hope for 20 years or even for 10. Another three or four would be awesome and I will treasure every moment.
I will treasure watching my kids grow and mature and seeing them move from one phase of their lives to the next. I will treasure every bite of food and every drink I take. I will enjoy the tickling that carbonated drinks give the back of your throat. I will enjoy any chance I get to take the dog for a walk or go for a hike with my wife.
Of course, this assumes that we make it through the next few weeks and the surgery that follows. It is not going to be easy nor is it going to involve easy choices but I need to live. I want to live. I want to see and do all that I can with the time I have remaining. Please keep my family in your thoughts over the next period of time and I will try post more frequently.
On Tuesday the 8th, we eventually got through the ER and ended up admitted as we expected. They started me on IV fluids and that helped my overall situation considerably. Then, we me Dr. Doom. AKA Dr. Murphy, the on-call oncologist. He came in and gave one of the most dire evaluations I have ever gotten. He even went as far as to say that I have had a good run of 15 years with this disease and it was time to just let it go. He said I was in multiple organ failure and there was little hope of any recovery, particularly for my liver.
Well, Surprise! Not dead yet. This did put Stephanie and I through the emotional wringer and we really did start having the talk of 'what if this is it?' amongst other conversations. We continued our time in the hospital, getting fluids and slowly worked back up to 'normal' almost dead (not even mostly dead, just almost dead).
Stephanie got ahold of Dr. Boudreaux in NOLA and his big concern was the liver and was cautiously optimistic that I could pull out of it but feels that I have just one big surgery left in me. We briefly discussed a multi-viceral transplant but, again, it was determined that I am not a candidate for that procedure.
With the NG tube inserted on Tuesday, we had begun to decompress my bowels and over the next couple of days, several liters of fluid was pulled from my digestive tract but no progress was made on passing stool. Finally, on Monday, we decided to have a shot at putting in a PEG-tube to my stomach so that we can use it to decompress the bowel rather than with the NG tube. Well, the GI doc said he could not get it but thought that an interventional radiologist might be able to.
The IR doc looked at some scans and said that he saw a 1cm hole where there was a possibility of putting in a PEG tube and we then transferred to Penrose hospital where they have an IR room with a CT that they can use during the procedure. After a two hour procedure on Thursday, I now had a tube in my abdomen that can drain the stomach. It has continued to drain fluid and has probably done over a liter so far but much of that is 'fresh' gastric juices.
What we have done is now buy some time. I expect to be released on the 19th where we will go home and attempt to finish getting my liver healthy. Once it is healthy, surgery should commence soon and I will have my last attempt at extending my life with this disease.
What will this next surgery buy me? I am hoping for a few years. If it is successful, it will just be another matter of waiting for the next bowel obstruction and then we will be in the end game. I don't hope for 20 years or even for 10. Another three or four would be awesome and I will treasure every moment.
I will treasure watching my kids grow and mature and seeing them move from one phase of their lives to the next. I will treasure every bite of food and every drink I take. I will enjoy the tickling that carbonated drinks give the back of your throat. I will enjoy any chance I get to take the dog for a walk or go for a hike with my wife.
Of course, this assumes that we make it through the next few weeks and the surgery that follows. It is not going to be easy nor is it going to involve easy choices but I need to live. I want to live. I want to see and do all that I can with the time I have remaining. Please keep my family in your thoughts over the next period of time and I will try post more frequently.
Monday, March 7, 2016
Back to the Hospital
My bowel obstruction just won't release and I am quickly going downhill. The Afinitor is driving my kidneys into failure so I have stopped taking it. The TPN was driving my liver into failure so we had to remove lipids from the TPN, greatly reducing the caloric content. Furthermore, I am unable to keep anything down other than sips of water and ice chips.
My weight has plummeted. This morning, the scale gave me the scary number of 133.2 pounds which is my absolute lowest ever by far. Some of that is probably dehydration but there is some truth to that number and that is incredibly scary. I am 6' 3" tall and 133 pounds is the kind of weight you would expect from an unhealthy runway model or a victim of anorexia/bulimia.
So, we have three different critical issues right now and enough is enough. I am trying to wrap up things around the house today and will be going to the hospital tomorrow to see if I can get stabilized in some fashion. At the same time, I have a message into my doctors in NOLA to see if they have suggestions as well because it is becoming urgent.
We were hoping to get my strength back over the next few months prior to having a major abdominal surgery but I don't think we will get that chance. I think we need a surgery fairly soon and my being weak is going to be just another risk factor that we will need to consider. Right now, I don't see any way to get more calories.
TPN can't go too high with just dextrose and amino acids as that will cause problems with the pancreas and type 2 diabetes. I can't swallow anything so there is no way to get calories orally. I am starting to experience some pretty severe abdominal cramps from the obstruction and then I also had the joy of fecal vomiting last night (experienced once before in a previous bowel obstruction).
I am quite miserable right now and we need to find a way out of this. I dread surgery and the recovery that is likely to be long and difficult. I fear getting stuck in New Orleans for several weeks before and after surgery. I worry about my wife and her new job, needing to take time off to take care of me while I am in and post surgery in NOLA.
On top of all of that, we have my daughter graduating from high school and I would love to be back home and at least partially recovered by her graduation in mid May. We have club soccer starting up for Forrest and are down a driver with Riley in College. We look at the enormity of everything coming up and it is scary.
Many people have offered help and we may need to rely on them heavily over the next period of time. One other thing (and this is Really a whine), we had a ski-in ski-out condo at Crested Butte and I saw it as my once chance to go skiing, even just a few easy green runs, this season. Obviously, that is out now too.
Bit of a downer and rambling post here and I apologize for that but that is a reflection of the situation that Stephanie, my family, and I are in at this point in time.
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