Aa
Nose Bleeds
I'm not sure what to think. I have been given a second chance at life and not sure what that life will look like except I have severe nose bleeds and must be still and not doing anything strenuous during these times.
I had wasting and all the other symptoms of liver disease. Being HVC free means I won't get worse but recovery from the damage done by it seems more daunting than I had anticipated. My focus is no longer on dying and more on living and I see I have a long road to go now. 4th stage liver disease, varices, wasting, spleen issues, everything but HE is what I have. I want to be active. I want to garden and do all the things I did before this virus cut me down. Besides having to sit or lay down during these bleeding times I have no other solution but to be sedentary. Does anyone else have these bleeds? What can be done to avoid them? It's scary because I think I'll end up in hospital again.
I read and reread the post by Hector on cirrhosis. http://www.medhelp.org/health_pages/Hepatitis/What-is-Cirrhosis-of-the-Liver/show/1304?cid=64
It helps to remind myself of what I'm dealing with. It's not like I walk off into the sunset now that the virus is gone. What happens here on out is a mystery. I have much to do with the life I have left and am intent on more recovery but I need to be realistic. Any input is greatly appreciated.
It can get discouraging especially since I have always been fit & active as well as having a good diet and being a non drinker.
I know my doc says things will get better for me now but how I can be sure?
Next week is the routine ultrasound and endoscopy to check for E bleeding.
2 steps up and one step back. It's quite a road. We never know what to expect. First we don't know if we can get the meds, then we don't know if it'll cure us, then we don't know if we'll be SVR, on and on...and so it goes.
Now what to do about left over damage??
I had wasting and all the other symptoms of liver disease. Being HVC free means I won't get worse but recovery from the damage done by it seems more daunting than I had anticipated. My focus is no longer on dying and more on living and I see I have a long road to go now. 4th stage liver disease, varices, wasting, spleen issues, everything but HE is what I have. I want to be active. I want to garden and do all the things I did before this virus cut me down. Besides having to sit or lay down during these bleeding times I have no other solution but to be sedentary. Does anyone else have these bleeds? What can be done to avoid them? It's scary because I think I'll end up in hospital again.
I read and reread the post by Hector on cirrhosis. http://www.medhelp.org/health_pages/Hepatitis/What-is-Cirrhosis-of-the-Liver/show/1304?cid=64
It helps to remind myself of what I'm dealing with. It's not like I walk off into the sunset now that the virus is gone. What happens here on out is a mystery. I have much to do with the life I have left and am intent on more recovery but I need to be realistic. Any input is greatly appreciated.
It can get discouraging especially since I have always been fit & active as well as having a good diet and being a non drinker.
I know my doc says things will get better for me now but how I can be sure?
Next week is the routine ultrasound and endoscopy to check for E bleeding.
2 steps up and one step back. It's quite a road. We never know what to expect. First we don't know if we can get the meds, then we don't know if it'll cure us, then we don't know if we'll be SVR, on and on...and so it goes.
Now what to do about left over damage??
Gastro Doc is referring me to a specialist for possible cauterizing. I've been told over and over by the ICU docs not to lose a single drop of blood and you can guess why. Hepatic anemia.
Doc says since we have no real data on life after HCV we'll have to wait and watch. He is almost certain I will go from F4 to F2 or better based on alcoholic liver diseased people when they abstain from their liquid monster.
Hector says we have ups and downs. This is a rare downer for me as I lost my patience. I have to roll with it. As time goes on we may learn more about life after HCV. Thanks for all your comments and support.
The experts say in 30 years HCV will be a historic virus. It'll be wiped out. I say yes and everyone who could has made a ton of money on this virus.
Doc says since we have no real data on life after HCV we'll have to wait and watch. He is almost certain I will go from F4 to F2 or better based on alcoholic liver diseased people when they abstain from their liquid monster.
Hector says we have ups and downs. This is a rare downer for me as I lost my patience. I have to roll with it. As time goes on we may learn more about life after HCV. Thanks for all your comments and support.
The experts say in 30 years HCV will be a historic virus. It'll be wiped out. I say yes and everyone who could has made a ton of money on this virus.
Hi KOKO. I do know that nosebleeds can be worrisome and unpredictable.
In a Cancer forum that I belong to Chemo tends to also create this issue. This exact topic was discussed as while on certain chemo combos nose bleeds from low platelets are very common. Their suggestions were to have your nose cauterized (use a hot wire which seals ) where the bleeding occurred which fixed the problem. Of course liver disease is a different animal then Cancer so make sure your Hepatologist agrees to this should it be an option.
Best to you
......Kim
In a Cancer forum that I belong to Chemo tends to also create this issue. This exact topic was discussed as while on certain chemo combos nose bleeds from low platelets are very common. Their suggestions were to have your nose cauterized (use a hot wire which seals ) where the bleeding occurred which fixed the problem. Of course liver disease is a different animal then Cancer so make sure your Hepatologist agrees to this should it be an option.
Best to you
......Kim
Drains down from the sinus. Tickles and burns all at the same time. It drains and leaks out of nostril. It doesn't come from the nose. It's the first sign before I have a 'bleed-out'. I haven't had a nose/sinus bleed in well over a year. I thought it would not occur again. Just trying to be patient and calm. If I end in the Hosp I end up in the Hosp. At least I no longer have that monster virus.
Hey KOKO, I was on S/R and had frequent nose bleeds a couple times a week, it seems that my nose was very sensitive when I was blowing my nose or my parrot got too rough.
Deb
I've had chronic nose bleeds since my liver became stage 3-4 compensated cirhosis and low platelets set in. Since I became non-detected in August 2014, the nose bleed problem gradually slowed down to a managable, not so worriesome level of tolerance. This problem can be very distressing, I remember it well.
Please be assured that in time, when platelets improve you might get some relief from this problem. I am surprised to see how long it takes to see improvement with platelet levels after tx. It seems my plts have fluctuated AFTER EOT from 135 to as low as 105 and back up to 115 and back up to 135 most recently. Before starting tx they were in the 130s so it seem that platelets take a while to recover. There are many other labs that fluctuate and take a while to recover from cirrhosis as well like alk/Phos and many others.
Do your nose bleeds mostly occur in the front of nose or in the sinus area? I had both occuring. Do your best to take care of sores in nose as infections can occur. I have found calandula ointment helps the bleeding sores in front of nose. Know that you and many others with cirrhosis have these issues all the time and you are not alone.
Please be assured that in time, when platelets improve you might get some relief from this problem. I am surprised to see how long it takes to see improvement with platelet levels after tx. It seems my plts have fluctuated AFTER EOT from 135 to as low as 105 and back up to 115 and back up to 135 most recently. Before starting tx they were in the 130s so it seem that platelets take a while to recover. There are many other labs that fluctuate and take a while to recover from cirrhosis as well like alk/Phos and many others.
Do your nose bleeds mostly occur in the front of nose or in the sinus area? I had both occuring. Do your best to take care of sores in nose as infections can occur. I have found calandula ointment helps the bleeding sores in front of nose. Know that you and many others with cirrhosis have these issues all the time and you are not alone.
Oh I don't have wasting anymore. My hair is not falling out. Lots of positives from being virus free. Just the damned bleeds that are scary.
I have so many goals and projects I want to complete. Having to be still during the nose bleeds so I don't get worse takes patience. I don't want to live a sedentary life. Hep C free since last Sept. Medical status "Cured". I'd say I have no choice but to be patient. Like Hector said the Portal Hypertension and low platelets are doable for now.
I'll have to roll with it and get the projects done when the bleeding stops. As Hector said:
" So living with cirrhosis and its complications is certainly doable but for many of us it wasn't always an easy journey and we had our ups and downs."
I'll have to roll with it and get the projects done when the bleeding stops. As Hector said:
" So living with cirrhosis and its complications is certainly doable but for many of us it wasn't always an easy journey and we had our ups and downs."
Glad to hear that you are cured of our hep C. That is the first big step in recovering your health. Curing the hepatitis C virus does stop further damage to your liver but it can't immediately reverse the liver damage it has caused. Just as the scarring of the liver took many decades to develop it often takes many years for the liver heal itself also.
With proper medical care and monitoring cirrhosis and its complications is a manageable disease. Many of us lived with ascites, varices, HE, blood clotting issues, muscle wasting, fatigue and many other complications including liver cancer for years before getting our liver transplants. So living with cirrhosis and its complications is certainly doable but for many of us it wasn't always an easy journey and we had or ups and downs..
Blood clotting issues are common in folks with advanced cirrhosis because clotting factor is made in the liver and a damaged liver makes less of it and because cirrhotics with portal hypertension have reduced platelet count levels to clot the blood. So your INR and platelet count blood level are a good indication of how your clot blood. As the health/function of the liver improves (and INR and platelet counts improve) so will your blood clotting improve.
Continue to live a healthy lifestyle, continue your periodic cirrhosis assessments (endoscopy/liver cancer surveillance) and talk to your doctor about the status of your cirrhosis. If you notice any thing new or out of the ordinary always let your doctor know about it.
Hang in there.
Hector
With proper medical care and monitoring cirrhosis and its complications is a manageable disease. Many of us lived with ascites, varices, HE, blood clotting issues, muscle wasting, fatigue and many other complications including liver cancer for years before getting our liver transplants. So living with cirrhosis and its complications is certainly doable but for many of us it wasn't always an easy journey and we had or ups and downs..
Blood clotting issues are common in folks with advanced cirrhosis because clotting factor is made in the liver and a damaged liver makes less of it and because cirrhotics with portal hypertension have reduced platelet count levels to clot the blood. So your INR and platelet count blood level are a good indication of how your clot blood. As the health/function of the liver improves (and INR and platelet counts improve) so will your blood clotting improve.
Continue to live a healthy lifestyle, continue your periodic cirrhosis assessments (endoscopy/liver cancer surveillance) and talk to your doctor about the status of your cirrhosis. If you notice any thing new or out of the ordinary always let your doctor know about it.
Hang in there.
Hector
Hey, KOkO: I have no experience with the problem, but just wanted to remind you that it tipook a looonnngg time to get to cirrhosis, so healing/improvement won't happen overnight. Please cut yourself some slack and build some rest into your schedule, and allow yourself to lay down when you get the nose bleeds.
From posts I have read over the months since I joined improvement in the cirrhotic liver was slow, but that it did improve and the same with the related conditions. I can't remember how long since you finished Tx, but it doesn't seem like even 6 month, much less a year. (But, hey, with my memory, that could be wrong).
I just wanted to give you a little encouragement! Please don't get discouraged at this point. Your 'name' on here says it all, my dear! Keep on keeping on.
Blessings and prayers.
Pat
From posts I have read over the months since I joined improvement in the cirrhotic liver was slow, but that it did improve and the same with the related conditions. I can't remember how long since you finished Tx, but it doesn't seem like even 6 month, much less a year. (But, hey, with my memory, that could be wrong).
I just wanted to give you a little encouragement! Please don't get discouraged at this point. Your 'name' on here says it all, my dear! Keep on keeping on.
Blessings and prayers.
Pat
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
