Aa
Varices, Nadolol, blood labs
I've been researching all week. Nadolol has me dizzy, slowing me down. I have been arguing w/ Dr. about when I can reduce. Bandings are going well. Next one in August. I'm terrified of bleeding out again. That ER and ICU situation made a huge impact on me.
I worked out some, and then reading about rebleeds slowed me down again. Triple digit heat index reminds me to be patient and stay inside. Yoga is great, but I wanna walk or ride my bike.
I know we all deal w/ the fear. It's hard to calm your mind w/ meds, lack of exercise, and statistics that shed light on a harsh reality.
Bottom line: I don't like not having control. I thought I would get it back after tx. Do you all find that the mental game is almost as hard as the physical one?
My hgb is 12.1. It's going up on it's own since finishing tx. Platelets are 61 which is 1/2 of pre tx. ALT/AST and absolute are good as is albumin. My one kidney keeps plugging away and all functions are fine.
So I guess that sums it up. Numbers are getting better. I have to adjust to living with Nadolol and threat of varices bleeds. I supposed to keep pulse between 60-80.
Sigh. Thanks for listening and feedback. I didn't feel so much at home at hep c forum once I finished tx. Not the people, just that the frequent posters could not all identify w/ my concerns. Hopefully others who are hit with the reality of living with cirhossis (especially hep c post tx) will find their way here. We still need support.
Peace out,
Karen :)
I worked out some, and then reading about rebleeds slowed me down again. Triple digit heat index reminds me to be patient and stay inside. Yoga is great, but I wanna walk or ride my bike.
I know we all deal w/ the fear. It's hard to calm your mind w/ meds, lack of exercise, and statistics that shed light on a harsh reality.
Bottom line: I don't like not having control. I thought I would get it back after tx. Do you all find that the mental game is almost as hard as the physical one?
My hgb is 12.1. It's going up on it's own since finishing tx. Platelets are 61 which is 1/2 of pre tx. ALT/AST and absolute are good as is albumin. My one kidney keeps plugging away and all functions are fine.
So I guess that sums it up. Numbers are getting better. I have to adjust to living with Nadolol and threat of varices bleeds. I supposed to keep pulse between 60-80.
Sigh. Thanks for listening and feedback. I didn't feel so much at home at hep c forum once I finished tx. Not the people, just that the frequent posters could not all identify w/ my concerns. Hopefully others who are hit with the reality of living with cirhossis (especially hep c post tx) will find their way here. We still need support.
Peace out,
Karen :)
Thanks all! It is tough dealing with all these issues. I've had 3 bandings since May and 1 more in a few weeks. I'm having a lazy summer. Getting a lot done, but listening to my body.
The side effects of treatment are non existent. I do believe however, that they took a toll and played a part in variceal bleed. Keeping stress low and eating high alkaline diet have been very beneficial as well.
Honestly, I believe that diet and lifestyle are huge factors in dealing with cirhossis. Even at stage 4, if I'm cautious, I can do just about anything I want. After having a death sentence loom over me, I loved saying that. haha!
The side effects of treatment are non existent. I do believe however, that they took a toll and played a part in variceal bleed. Keeping stress low and eating high alkaline diet have been very beneficial as well.
Honestly, I believe that diet and lifestyle are huge factors in dealing with cirhossis. Even at stage 4, if I'm cautious, I can do just about anything I want. After having a death sentence loom over me, I loved saying that. haha!
COMMUNITY LEADER
Hello ceanothus, I am glad you found us and welcome! It sounds like you may have a promising recovery ahead of you. Once again Hector has done a great job answering your post!
Please feel welcome to post any questions or comments you have. I wish the very best for you! Take care.
Randy
Please feel welcome to post any questions or comments you have. I wish the very best for you! Take care.
Randy
COMMUNITY LEADER
You are doing the best possible thing possible for your liver disease and your life. Hopefully you will stop the progression of your liver disease by ridding yourself of the hep C virus that is damaging your liver. Since your have very early cirrhosis, if you can eliminate the virus, your liver would have a good chance of healing itself, as portal hypertension by its very nature causes damage to the liver.
Best of luck with your treatment!!!
Hector
Best of luck with your treatment!!!
Hector
Wow, you guys are so amazing! I'm cirrhotic too, but so far with none of the complications associated - no varices, no ascites, no portal hypertension, hardly any enlargement of the spleen. I read about all these things with a great sense of foreboding, but then I read your stories of fighting these battles and I am inspired and somewhat consoled. I'm still in tx and am hoping with all my might that I will achieve SVR this time, and achieve it in time to avoid any more worsening of my liver condition, but if I don't get that wish, at least I have your great examples of courage and strength to follow in my own battles. Thank you!
COMMUNITY LEADER
Hi K.
PART I
As far as your platelet count "coming back up". I believe before treatment you had a platelet count over 100,000? I could be wrong. Either way most of us cirrhotics have platelet counts under 100,000 due to portal hypertension caused by the amount of scaring of our livers. Your platelet count may still be effected by the peg-interferon and go higher but after that effect has normalized your platelet count will most likely be less than before as your liver disease has progressed since starting treatment. For all cirrhotics there is the risk that treatment can worsen liver disease and in a small number of patients even cause their livers to fail. This is why many of us are put on transplant lists before being treated. It is a backup plan. My current platelet count is 56. During the past five years with cirrhosis I have never had a platelet count about 79.
NOTE: Platelet count has NO affect on how you feel. Platelet are for clotting blood. For us cirrhotics, depending on how sick our livers are we are have clotting issues which get worse with time.
See your PT/INR results to see how much longer your blood takes to clot compared to the average health person to know how extensive your blood clotting issues are.
How it all works.....
"Blood flows from the spleen...through the portal vein...then through the liver.
Scar tissue in the liver (cirrhosis) can interfere with that blood flow, causing pressure to build up in the portal vein (portal hypertension), and the spleen to enlarge (splenomegaly).
As the spleen enlarges, it traps platelets. (The amount of platelets in the bloodstream is reduced because the spleen is busy trapping them).
So usually---people with cirrhosis end up having a problem with portal hypertension and an enlarged spleen, and a reduced platelet count in the bloodstream. As time goes by, the liver may try to repair itself by growing new cells. If there is a lot of scar tissue already present--- the new cells grow between scar tissue (and result in abnormal nodules). (The nodules and scar tissue can further interfere with blood flow through the liver). So over time people with advanced cirrhosis can end up having a problem with more and more abnormal nodules and scar tissue forming...which interferes even more with blood flow through the liver.....which makes the spleen continue to enlarge....and the platelet count continue to drop."
----------------------------------------------------------------------
PART II
"Nadolol has me dizzy, slowing me down."
Yes, this is a side effect of beta-blockers. I had the same issues for the first few months of using Nadolol myself. Hopefully in time your body will adjust.
"You may experience dizziness, lightheadedness, drowsiness, and blurred vision as your body adjusts to the medication. Use caution engaging in activities requiring alertness. Because beta-blockers may reduce blood circulation to the extremities, your hands and feet may be cold. Dress warm. Inform your doctor if you develop: easy bruising or bleeding, swollen hands or feet, confusion, depression, a sore throat. Tell your doctor immediately if any of these unlikely but serious side effects occur: slow/irregular heartbeat."
http://www.medicinenet.com/beta_blockers-oral/article.htm
Unfortunately since we have a potentially fatal disease, we with End-Stage Liver Disease have to learn to liver with feeling ill on a daily basis vs life-threatening complications of our disease. We must put our illness in context. We suffer numerous complications and side effects from our disease and the treatments in order to stay alive.
Let's take the issue of varices.
"Gastroesophageal varices are present in approximately 50% of patients with cirrhosis. Their presence correlates with the severity of liver disease; while only 40% of Child A patients have varices, they are present in 85%
of Child C patients. - AASLD Prevention and Management of Gastroesophageal Varices and Variceal Hemorrhage in Cirrhosis - Guideline
Patients with Cirrhosis Who Have Recovered from Acute Variceal Hemorrhage
Patients who survive an episode of acute variceal hemorrhage have a very high risk of rebleeding and death. The median rebleeding rate in untreated individuals is around 60% within 1-2 years of the index hemorrhage, with a
mortality of 33%. It is therefore essential that patients who have recovered from an episode of variceal hemorrhage and have had no evidence of hemorrhage for at least 24 hours be started on therapy to prevent recurrence prior to discharge from the hospital. Patients who required
shunt surgery/TIPS to control the acute episode do not require further preventive measures. All these patients should be referred to a transplant center if they are otherwise a candidate (i.e., Child-Pugh score 7 or a MELD score 15).
Nonselective -blockers or sclerotherapy reduce rates of variceal rebleeding to around 42-43%. - AASLD Prevention and Management of Gastroesophageal Varices and Variceal Hemorrhage in Cirrhosis - Practice Guideline
Obviously knowing these facts, beta-blockers and their side effects can be a small price to pay to reduce the likelihood of another bleeding episode.
-------------------------------------------------------------------------------------
PART III
Which bring us to you point "Do you all find that the mental game is almost as hard as the physical one? " That fact is we have little control over how our individual disease progresses. And it is up to our medical team to manage those aspects of our illness. Personally I find the mental part to be the overwhelming factor when dealing with a serious disease. I have my own therapist and psychiatrist that I can talk you about issues I can't talk about to my friends or family. Fear of death, how my life has become a shell of what it used to be, feeling ill every day, etc. I am also a core member of a transplant support group that includes family members of transplant patients. What they go through is all about learning to cope with someone who has a life-threatening illness. They are not ill but in their own way they suffer most than we patients do. As they have no control over what is happening to their loved one. The feeling of hopeless is profound and gut wrenching. It least we can control our attitude about it all and learn from this experience. I am not saying this is easy. This is the hardest thing I have every done in my life by far. In the end if I die it is me who will die not anyone else. So I have to do this being true to myself and my values. I have already arranged for my death and that was no easy thing to do by any stretch of the imagination. But I don't want to leave a mess behind for my sister.
------------------------------------------------------------------------------
I wish us all good outcomes. I am sorry for the suffering of any ill person. Remember there are over 16,000 of us waiting for transplants and on average 18 persons die a day waiting for a heart, lung, kidney, liver etc. We are still alive today so in my book that means a lot. I rather be sick and alive then the alternative any day. As long as there is life there is hope no matter how dire are circumstance.
Hang in there K! Yes, it is no bed of roses at times but life is truly worth fighting for.
Peace.
Hector
PART I
As far as your platelet count "coming back up". I believe before treatment you had a platelet count over 100,000? I could be wrong. Either way most of us cirrhotics have platelet counts under 100,000 due to portal hypertension caused by the amount of scaring of our livers. Your platelet count may still be effected by the peg-interferon and go higher but after that effect has normalized your platelet count will most likely be less than before as your liver disease has progressed since starting treatment. For all cirrhotics there is the risk that treatment can worsen liver disease and in a small number of patients even cause their livers to fail. This is why many of us are put on transplant lists before being treated. It is a backup plan. My current platelet count is 56. During the past five years with cirrhosis I have never had a platelet count about 79.
NOTE: Platelet count has NO affect on how you feel. Platelet are for clotting blood. For us cirrhotics, depending on how sick our livers are we are have clotting issues which get worse with time.
See your PT/INR results to see how much longer your blood takes to clot compared to the average health person to know how extensive your blood clotting issues are.
How it all works.....
"Blood flows from the spleen...through the portal vein...then through the liver.
Scar tissue in the liver (cirrhosis) can interfere with that blood flow, causing pressure to build up in the portal vein (portal hypertension), and the spleen to enlarge (splenomegaly).
As the spleen enlarges, it traps platelets. (The amount of platelets in the bloodstream is reduced because the spleen is busy trapping them).
So usually---people with cirrhosis end up having a problem with portal hypertension and an enlarged spleen, and a reduced platelet count in the bloodstream. As time goes by, the liver may try to repair itself by growing new cells. If there is a lot of scar tissue already present--- the new cells grow between scar tissue (and result in abnormal nodules). (The nodules and scar tissue can further interfere with blood flow through the liver). So over time people with advanced cirrhosis can end up having a problem with more and more abnormal nodules and scar tissue forming...which interferes even more with blood flow through the liver.....which makes the spleen continue to enlarge....and the platelet count continue to drop."
----------------------------------------------------------------------
PART II
"Nadolol has me dizzy, slowing me down."
Yes, this is a side effect of beta-blockers. I had the same issues for the first few months of using Nadolol myself. Hopefully in time your body will adjust.
"You may experience dizziness, lightheadedness, drowsiness, and blurred vision as your body adjusts to the medication. Use caution engaging in activities requiring alertness. Because beta-blockers may reduce blood circulation to the extremities, your hands and feet may be cold. Dress warm. Inform your doctor if you develop: easy bruising or bleeding, swollen hands or feet, confusion, depression, a sore throat. Tell your doctor immediately if any of these unlikely but serious side effects occur: slow/irregular heartbeat."
http://www.medicinenet.com/beta_blockers-oral/article.htm
Unfortunately since we have a potentially fatal disease, we with End-Stage Liver Disease have to learn to liver with feeling ill on a daily basis vs life-threatening complications of our disease. We must put our illness in context. We suffer numerous complications and side effects from our disease and the treatments in order to stay alive.
Let's take the issue of varices.
"Gastroesophageal varices are present in approximately 50% of patients with cirrhosis. Their presence correlates with the severity of liver disease; while only 40% of Child A patients have varices, they are present in 85%
of Child C patients. - AASLD Prevention and Management of Gastroesophageal Varices and Variceal Hemorrhage in Cirrhosis - Guideline
Patients with Cirrhosis Who Have Recovered from Acute Variceal Hemorrhage
Patients who survive an episode of acute variceal hemorrhage have a very high risk of rebleeding and death. The median rebleeding rate in untreated individuals is around 60% within 1-2 years of the index hemorrhage, with a
mortality of 33%. It is therefore essential that patients who have recovered from an episode of variceal hemorrhage and have had no evidence of hemorrhage for at least 24 hours be started on therapy to prevent recurrence prior to discharge from the hospital. Patients who required
shunt surgery/TIPS to control the acute episode do not require further preventive measures. All these patients should be referred to a transplant center if they are otherwise a candidate (i.e., Child-Pugh score 7 or a MELD score 15).
Nonselective -blockers or sclerotherapy reduce rates of variceal rebleeding to around 42-43%. - AASLD Prevention and Management of Gastroesophageal Varices and Variceal Hemorrhage in Cirrhosis - Practice Guideline
Obviously knowing these facts, beta-blockers and their side effects can be a small price to pay to reduce the likelihood of another bleeding episode.
-------------------------------------------------------------------------------------
PART III
Which bring us to you point "Do you all find that the mental game is almost as hard as the physical one? " That fact is we have little control over how our individual disease progresses. And it is up to our medical team to manage those aspects of our illness. Personally I find the mental part to be the overwhelming factor when dealing with a serious disease. I have my own therapist and psychiatrist that I can talk you about issues I can't talk about to my friends or family. Fear of death, how my life has become a shell of what it used to be, feeling ill every day, etc. I am also a core member of a transplant support group that includes family members of transplant patients. What they go through is all about learning to cope with someone who has a life-threatening illness. They are not ill but in their own way they suffer most than we patients do. As they have no control over what is happening to their loved one. The feeling of hopeless is profound and gut wrenching. It least we can control our attitude about it all and learn from this experience. I am not saying this is easy. This is the hardest thing I have every done in my life by far. In the end if I die it is me who will die not anyone else. So I have to do this being true to myself and my values. I have already arranged for my death and that was no easy thing to do by any stretch of the imagination. But I don't want to leave a mess behind for my sister.
------------------------------------------------------------------------------
I wish us all good outcomes. I am sorry for the suffering of any ill person. Remember there are over 16,000 of us waiting for transplants and on average 18 persons die a day waiting for a heart, lung, kidney, liver etc. We are still alive today so in my book that means a lot. I rather be sick and alive then the alternative any day. As long as there is life there is hope no matter how dire are circumstance.
Hang in there K! Yes, it is no bed of roses at times but life is truly worth fighting for.
Peace.
Hector
Thanks for the welcome! I too was diagnosed in 2010 and on a learning curve. The medforum has helped so much with that. Hector has saved me (all of us) countless hours researching. It's not easy to look up new info when you're emotionally and physically under distress.
I think that is my problem, learning to slow down. Not an easy lesson. I'm sorry to hear about your diagnosis. If your liver isn't too damaged, you can overcome a lot. My dad was an alcoholic and quit drinking. Great story there that is full of hope. He lived 20 years AFTER becoming decompensated. I pray you do as well!
I fought the platelet battle all thru tx. Promacta helped, but I'm counting on them gradually improving on their own. I do know that our bodies stabilize when we take the right steps through lifestyle, nutrition, and exercise. Denial hits so hard that it is sometimes difficult to accept new truths about our bodies and begin to make those changes.
I don't go Wah Wah very often, but when it happens, it's ugly. Haha! I'm feeling more hopeful now. It comes and goes as I'm sure you know.
Thanks again,
Karen :)
I think that is my problem, learning to slow down. Not an easy lesson. I'm sorry to hear about your diagnosis. If your liver isn't too damaged, you can overcome a lot. My dad was an alcoholic and quit drinking. Great story there that is full of hope. He lived 20 years AFTER becoming decompensated. I pray you do as well!
I fought the platelet battle all thru tx. Promacta helped, but I'm counting on them gradually improving on their own. I do know that our bodies stabilize when we take the right steps through lifestyle, nutrition, and exercise. Denial hits so hard that it is sometimes difficult to accept new truths about our bodies and begin to make those changes.
I don't go Wah Wah very often, but when it happens, it's ugly. Haha! I'm feeling more hopeful now. It comes and goes as I'm sure you know.
Thanks again,
Karen :)
COMMUNITY LEADER
Hi Karen and welcome to MedHelp’s Cirrhosis of the Liver community.
I see a lot of new members in our community are cirrhotic due to hepatitis so I hope you will feel more comfortable here. Personally my cirrhosis (diagnosed March 2010) is due to alcoholism but we all share the same challenges with cirrhosis. I'm learning as we go more and more about hepatitis and figuring out that it's like with anything else, the sooner we begin treatment the better chances we have for recovery. The day to day challenges do become monotonous but in my experience they are so worthwhile just to help feel normal for the day. Learn as much as possible about cirrhosis and pay close attention to lab results and make efforts to bring those enzymes that are out of range back to normal. Do this through diet, exercise and medication. Of course always consult your doctor’s advice first and foremost. He/she spent a lot of time learning what we are struggling to understand.
You probably already understand but just in case you should know that taking the Nadolol (beta blocker) lowers your blood pressure resulting in reducing portal hypertension which is what causes your varices and hemorrhage.
I see you posted on a topic I made initially concerning my platelet count that turned into a discussion about varices as well. I hope you found some information there that can help as well. Don’t be afraid to just take it easy for a while so that your body has time to heal. From reading your above post you seem very determined and that’s a great quality about you but use caution with your exertions. I find myself in similar circumstances where I'm trying to do more than I should be and I think it helps to be that way but it's not worth taking to many risks. Again welcome and I'm glad you found us :)
Randy
I see a lot of new members in our community are cirrhotic due to hepatitis so I hope you will feel more comfortable here. Personally my cirrhosis (diagnosed March 2010) is due to alcoholism but we all share the same challenges with cirrhosis. I'm learning as we go more and more about hepatitis and figuring out that it's like with anything else, the sooner we begin treatment the better chances we have for recovery. The day to day challenges do become monotonous but in my experience they are so worthwhile just to help feel normal for the day. Learn as much as possible about cirrhosis and pay close attention to lab results and make efforts to bring those enzymes that are out of range back to normal. Do this through diet, exercise and medication. Of course always consult your doctor’s advice first and foremost. He/she spent a lot of time learning what we are struggling to understand.
You probably already understand but just in case you should know that taking the Nadolol (beta blocker) lowers your blood pressure resulting in reducing portal hypertension which is what causes your varices and hemorrhage.
I see you posted on a topic I made initially concerning my platelet count that turned into a discussion about varices as well. I hope you found some information there that can help as well. Don’t be afraid to just take it easy for a while so that your body has time to heal. From reading your above post you seem very determined and that’s a great quality about you but use caution with your exertions. I find myself in similar circumstances where I'm trying to do more than I should be and I think it helps to be that way but it's not worth taking to many risks. Again welcome and I'm glad you found us :)
Randy
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