After one week of some wonderful labs, I am back in the red again. Alk Phos jumped to 2015 from 1780, AST jumped to 153 from 55, and ALT jumped to 244 from 110.
Shit.
I don't know what to say other than this is incredibly depressing. I imagine the next step will be a liver biopsy to get another look at what is going on but I just don't know.
Shit. Shit. Shit.
Tuesday, April 26, 2016
Wednesday, April 20, 2016
Iron overload confirmed and liver limbo no more!
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.
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.
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.
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