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Hepatologist appointment update
I fought hard for this appointment and I am glad that I did. I really like this Doctor. He took so much time to answer every single one of my questions. I did try to make it as quick as possible as I could tell he was a very busy man. Here is what he had to say:
ESLD Cirrhosis. NASH. Decompensated. Portal hypertension, Ascites, mild HE, enlarged spleen, Not eligible for transplant at this point because of my heart and lungs, live donor not an option. (although I am far from needing a transplant anyways) But, I am overweight. I need to lose about 60 lbs and he thinks it MIGHT help my heart and lungs, no guarantees. IF, if, I can somehow lesson my heart and lung diseases he MIGHT be able to get me on the transplant list when needed again never any guarantees. Which he says could be in 1-3 years if I continue to watch diet/salt and stay away from harmful substances etc. You all know the drill. CTP 9 and amazingly Meld is 7.
He said he would love to be my Hepatologist if I was comfortable with that. Which I am, especially since he's so nice and he is one of the actual transplant Doctors.
He did clear me for surgery. He said only because it is a "have to have" surgery. It is better that I have it now as opposed to later because my health is not going to get better, I will just get worse. So I have a better chance the healthier I am. It is very high risk but as long as the surgeon and I know the risks, he leaves it up to us. He said that it could decompensate me even further, but how much is the question. Again, the longer I wait, the worse the odds are.
I also asked him about his thoughts on ammonia and HE as I've been looking into HE & ascites a lot lately. Trying to become more knowledgeable. He said like all of you have said and like a lot of what I've read, that ammonia levels really don't have much to do with HE. That high ammonia levels are basically par for the course with cirrhosis.
I also asked him about protein, because I've been trying to balance the high/low protein thing for HE and Ascites. He said DO NOT cut out protein. We need protein. If I see that a certain protein effects the HE more than others, then stay away from that one, but do not go on a low protein diet. He also said vegetable proteins might be better. i.e. tofu. icky. lol
Then I asked him about water intake because I've been told I need a lot of water for my kidneys. When I think I"ve drank enough, drink more. But, I have read that because of ascites I should not be drinking that much water. His opinion is that I should drink as much water as I want or need.
As for Lactulose, I hate the stuff, but he said that yes I should be on it because I cannot afford the other stuff... but that I can regulate the dosage on my own. 3 soft Bm's a day...if I have 5 or more then that's to much lactulose, if I am having issues with HE I'm not taking enough. So, there I have it.
Didn't mean to ramble. I just wanted you all to know the info that he gave me. There's no going into denial anymore I guess. I sure can't say that he doesn't know what he's talking about. Not real sure how I'm suppose to feel at this point again. But, I'm happy to have this Doctor on my team and ready to fight the good fight. I will be seeing him every three months.
Shelley
ESLD Cirrhosis. NASH. Decompensated. Portal hypertension, Ascites, mild HE, enlarged spleen, Not eligible for transplant at this point because of my heart and lungs, live donor not an option. (although I am far from needing a transplant anyways) But, I am overweight. I need to lose about 60 lbs and he thinks it MIGHT help my heart and lungs, no guarantees. IF, if, I can somehow lesson my heart and lung diseases he MIGHT be able to get me on the transplant list when needed again never any guarantees. Which he says could be in 1-3 years if I continue to watch diet/salt and stay away from harmful substances etc. You all know the drill. CTP 9 and amazingly Meld is 7.
He said he would love to be my Hepatologist if I was comfortable with that. Which I am, especially since he's so nice and he is one of the actual transplant Doctors.
He did clear me for surgery. He said only because it is a "have to have" surgery. It is better that I have it now as opposed to later because my health is not going to get better, I will just get worse. So I have a better chance the healthier I am. It is very high risk but as long as the surgeon and I know the risks, he leaves it up to us. He said that it could decompensate me even further, but how much is the question. Again, the longer I wait, the worse the odds are.
I also asked him about his thoughts on ammonia and HE as I've been looking into HE & ascites a lot lately. Trying to become more knowledgeable. He said like all of you have said and like a lot of what I've read, that ammonia levels really don't have much to do with HE. That high ammonia levels are basically par for the course with cirrhosis.
I also asked him about protein, because I've been trying to balance the high/low protein thing for HE and Ascites. He said DO NOT cut out protein. We need protein. If I see that a certain protein effects the HE more than others, then stay away from that one, but do not go on a low protein diet. He also said vegetable proteins might be better. i.e. tofu. icky. lol
Then I asked him about water intake because I've been told I need a lot of water for my kidneys. When I think I"ve drank enough, drink more. But, I have read that because of ascites I should not be drinking that much water. His opinion is that I should drink as much water as I want or need.
As for Lactulose, I hate the stuff, but he said that yes I should be on it because I cannot afford the other stuff... but that I can regulate the dosage on my own. 3 soft Bm's a day...if I have 5 or more then that's to much lactulose, if I am having issues with HE I'm not taking enough. So, there I have it.
Didn't mean to ramble. I just wanted you all to know the info that he gave me. There's no going into denial anymore I guess. I sure can't say that he doesn't know what he's talking about. Not real sure how I'm suppose to feel at this point again. But, I'm happy to have this Doctor on my team and ready to fight the good fight. I will be seeing him every three months.
Shelley
COMMUNITY LEADER
Shelley,
I am glad you have have found a doctor that you feel is doing his best to help you deal with your cirrhosis. Someone you trust. It is vital. It is so important when we are dealing with such a life altering illness as cirrhosis can be.
Also I can assure you that all the statements that your doctor made are the common consensus among hepatologists that work in this country's leading transplant centers. The are the best practices as spelled out in the AASLD Practice Guidelines.
There is another form of lactulose that comes in powered form and even if you mix it in plain water has just about no taste at all. Mix it with fruit juice and you will never know the difference. It is called "'Kristalose'" by Cumberland Pharma. Each packet of powder contains 20 grams of lactulose. It is more expensive but a pleasant change from that way too sweet goo, at least for me who has been taking lactulose for 4+ years now. Ask your doctor about it.
I am happy you now have someone to work with you to help manage your health so you will be able to as healthy as you can for as long as you can and so you will have the most options available should your liver disease continue to progress.
You have just taken the most important step any cirrhotic can take. Finding the best healthcare possible to help you through this journey.
Best!
Hector
I am glad you have have found a doctor that you feel is doing his best to help you deal with your cirrhosis. Someone you trust. It is vital. It is so important when we are dealing with such a life altering illness as cirrhosis can be.
Also I can assure you that all the statements that your doctor made are the common consensus among hepatologists that work in this country's leading transplant centers. The are the best practices as spelled out in the AASLD Practice Guidelines.
There is another form of lactulose that comes in powered form and even if you mix it in plain water has just about no taste at all. Mix it with fruit juice and you will never know the difference. It is called "'Kristalose'" by Cumberland Pharma. Each packet of powder contains 20 grams of lactulose. It is more expensive but a pleasant change from that way too sweet goo, at least for me who has been taking lactulose for 4+ years now. Ask your doctor about it.
I am happy you now have someone to work with you to help manage your health so you will be able to as healthy as you can for as long as you can and so you will have the most options available should your liver disease continue to progress.
You have just taken the most important step any cirrhotic can take. Finding the best healthcare possible to help you through this journey.
Best!
Hector
Kitty: He seems like a wonderful Doctor. I am so thankful to Advocate1955 for heading me in the direction of the UW and for everyone that is always saying "you need a hepatologist, they are the only ones that can help you" in so many posts. It is so true. I feel a sense of relief knowing that I am with a Doctor that knows what is really going on. And yes, it would seem that surgery is the next step. Well, after finding a new PCP. I am interviewing, ha ha, a Doctor for that position tomorrow. I'm taking a very new and very proactive approach to my healthcare and healthcare providers. Oh.. lactulose isn't really thaaaaat bad. I'm just being a weanie about it. I don't like the taste and some of the side effects aren't so wonderful for me but if that's the worse I have to deal with then I'm doing great. :) I hope all is well with you.
Randy: He was great (the Dr). Didn't pull any punches which is what I love. But was very compassionate. I agree with the feeling like a new person after the surgery and weight loss. The surgery makes me a bit nervous now but that's ok. It has to be done. It will be a very long recovery time, the surgeon says a few months but since my health is what it is, it will add a bit more onto it. But, there is a lot I can still do while recouping.. get on a good eating plan, do not want to call it a diet because it will be a life long thing. Oh yeah, he also said that with my health issues I should have been sent to a dietician years ago. Anyways, I can get that going on and I'm sure that walking will be good for rehab and weight loss :). Anyways, I'm excited to get on with the fight. I now feel like I'm moving, not just sitting and waiting. And eeeeew lol, you like the taste of lactulose? You must have a serious sweet tooth. You know that feeling you get in your body when you put tin foil in your mouth? ok, don't ask how I know what that feels like because I have no idea, ha ha ha, maybe it's what I'd imagine it to feel like.. anyways, that's what happens when I take the lactulose. Lucky you though. I wish I liked it. Hope you are doing well.
Shelley
Randy: He was great (the Dr). Didn't pull any punches which is what I love. But was very compassionate. I agree with the feeling like a new person after the surgery and weight loss. The surgery makes me a bit nervous now but that's ok. It has to be done. It will be a very long recovery time, the surgeon says a few months but since my health is what it is, it will add a bit more onto it. But, there is a lot I can still do while recouping.. get on a good eating plan, do not want to call it a diet because it will be a life long thing. Oh yeah, he also said that with my health issues I should have been sent to a dietician years ago. Anyways, I can get that going on and I'm sure that walking will be good for rehab and weight loss :). Anyways, I'm excited to get on with the fight. I now feel like I'm moving, not just sitting and waiting. And eeeeew lol, you like the taste of lactulose? You must have a serious sweet tooth. You know that feeling you get in your body when you put tin foil in your mouth? ok, don't ask how I know what that feels like because I have no idea, ha ha ha, maybe it's what I'd imagine it to feel like.. anyways, that's what happens when I take the lactulose. Lucky you though. I wish I liked it. Hope you are doing well.
Shelley
COMMUNITY LEADER
Hi Shelly,
It's so good to hear you have found a great doctor. He really seems to know what you need to do. I know dealing with your immediate health problems is hard enough but I really think your doctor is right thinking long term and weight loss. With the surgery and weight loss you could feel like an entirely new person in a year! You always seem so strong and good spirited I think you can make this happen! Please keep us posted on how things are going, it's always good to hear from you.
BTW I actually like the taste of lactulose, yummy sweet! Ha ha Although the side effects can be something else until you get the dosage set. As always wishing you the best, take care!
Randy
It's so good to hear you have found a great doctor. He really seems to know what you need to do. I know dealing with your immediate health problems is hard enough but I really think your doctor is right thinking long term and weight loss. With the surgery and weight loss you could feel like an entirely new person in a year! You always seem so strong and good spirited I think you can make this happen! Please keep us posted on how things are going, it's always good to hear from you.
BTW I actually like the taste of lactulose, yummy sweet! Ha ha Although the side effects can be something else until you get the dosage set. As always wishing you the best, take care!
Randy
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