Hi Aubrey, Just checking in to say Hi ! I realized after reading my previous post when I was more awake that it was still pretty graphic. Please don't allow fear of the unknown to hinder you from staying positive. You have done a fantastic job with your better diet and lifestyle changes. I wanted to comment on your vitamins. The one vitamin that seemed to help my liver function is Ester-C.
When lack of sleep or stress triggered an auto-immune response (ascites and fluid retention, dark urine) in me, the time release vitamin C 500mg. would help clear up my output to normal color and quell the occasional soapsuds effect of protein in the urine. I became dependent on having it both psychologically and physically. Without any doubt in my particular case, I noticed that when I did without it for any length of time my urine would turn darker and smelly. So I like to get my vitamins from my food mostly and not be dependent on supplements so I would skip a day here and there on purpose in order for my body to process my foods without them. We are all different in our types of liver damage as well as what works best for us as individuals in stabilizing and healing ourselves. I have almost the same meld score (10) and F3-4 , We are one year apart in age and my liver damage (I believe) is a combo also of viral and alcohol damage from my younger years. It took me and a team of hospital professionals 13 months to get my Harvoni approved by my insurance. There are also other courses of help for funding. I know two people who received their medication paid for in full a year ago by an org. in florida called PAN and have both achieved non detectable status 9 months EOT and are headed for true SVR 12. I stopped eating (almost entirely) all processed foods and pay for Non-GMO versions of everything and definitely feel a big positive difference. You are a great candidate for Harvoni or one of the newer drugs coming out soon.
So ,I hope you had a nice holiday.. Realize you have a great chance of beating this thing and even reversing some of the damage.
Once again ,
Prayers & Good luck to all of us here fighting and winning our battles
Hi Aubrey and all,
About a varice bleed. Don't panic but get that upper endoscopy ASAP.
I had a major bleed ( there are no minor ones ) at work. It was a hot day and the AC was out. I was feeling peaked. My manager says I look pale. I'm the boss so I excused myself and decided to work and rest a bit in my air conditioned car. I became very sleepy suddenly and next thing I know I'm waking up 90 mins later and very thirsty.
I go back in to work and someone offers me ice water which I drink down fast. I started feeling nauseous and hurried to the bathroom. And then forcefully vomited more blood than I ever wanted to see ever. I cleaned up excused myself called my wife and she got me to the nearest hospital. ( less than a mile luckily) they pumped my stomach and and I needed 4 units of blood!! I was told many people don't survive these. (50% or less) I was then scoped and banded, that was 4 yrs ago. Now I'm on Harvoni (day 3) and scheduled for an upper endoscopy and possible further banding this week just to be safe. So I know this is scary but not as scary as dying before your time. The procedure is a breeze. A little sore throat for a day afterwards. I held back on the more graphic details because we all have enough stress around here, but hope I made an impression, gave you some insight into what to look out for as far as symptoms. ( weak, tired/ sleepy , nauseous after water.) don't let a complication stress you to the point of inaction.
Good luck with your scope.
And my best to all.
Thanks so much! Still working hard on the positive attitude. Having a few more down days. I guess the honeymoon is over. But I am still choosing happiness. Best of luck to you on the Harvoni. What a journey you have had. I love your attitude. Be well!
Aubrey, I had banding done after a varice or ulcer bleed out in 2011 (they never found the source) but I had many large varices and after the banding all I had was a sore throat afterwards (and weeks of hiccoughs for some reason) My platelets were about 40 then and dropping 10 every year for the last 7 yrs. I had a hard time with beta blockers and am now opting to get a second round of banding as suggested before starting my Harvoni treatment next week. My lifestyle and diet changes seems to have raised my platelets to 70 (and rising) at last count , but this is still low and I'm still at risk for a bleed if unchecked. Im grateful my clotting factor has also improved lately but I really don't know why. Good luck to you and do your best to keep a Positive Mental Attitude as you make this journey.
After my husband has the procedure, if they had to do banding then they put him on a strict diet for the next week and a half. First day after procedure he is only allowed to have clear liquids, can't take his medicine. Next few days he can have soft foods and start adding his medicines back in. This last time was easier on him, it was the first time ever that he didn't get sick afterwards. Just had a dull headache was all. Keeping my fingers crossed next session there are NO varicies that need to be banded.
It seems like banding them would be the better alternative due to the side effects of beta blockers.
Sarah when I had my endoscopy they saw varacies but did not band them at that time. In my case they felt like beta blockers would be the better alternative and that's what we did. Talk to your Dr before the procedure and find out his typical protocol. You should get the scope as bleeding varacies can be life threatening.
When you had your endoscopy, did they do the banding at the same time. My doctor wants to do the procedure the first time to only check things out and then if I should need banding they would do a second procedure. This is one of the reasons I've yet to have an endoscopy. I know it's 50/50 but worry about infection, pain, and anesthesia. They won't use propanol, only urgh I forget the name of the other one that's cheaper. It's a bad week for memory. :)
I am not totally sure for me I think it was 4 each time but it could have been more I am of smaller stature so maybe my throat is smaller too.
Only problem I had was it was real hard to swollow for several days especially the first 2. Felt kinda like I had a big piece of meat stuuck in my throat like in the upper center of my chest. Made the mistake ot trying to eat a bagel real tough time going down.
Maybe macaroni or soup for a couple of days soft foods anyway
Lynn that's so good to hear you've been able to manage your varicies. Gives me hope that my husband can do the same. Do you remember an average number they banded each time? My husband has had as many as 8 at one time but usually it's 6-7
Endoscopic variceal banding (or ligation)
During variceal banding, a doctor uses an endoscope to place an elastic ring that looks like a rubber band around an enlarged vein. Banding the vein in this manner will cut off blood flow through the vein. It may be difficult to use this procedure while someone is actively bleeding, because the device used to place the bands obscures the doctor's vision.
Variceal banding is often done several times to control the varices and prevent bleeding. For example, banding might be repeated every 2 to 4 weeks for 3 to 4 sessions. Your doctor will monitor (check) the varices every 3 to 12 months after that for the rest of your life.
I had banding done I had an upper EGD once a month for 4 months to eradicate all the varicies.
I was checked again at 6 months and now every year so far no reoccurance since 2012
Wow, so sorry to hear about your husband. That is scary. Do they do the banding at the same time as the endoscopy? What exactly is banding? What does it entail? I just tend to prepare for the worst and work myself up into a full blown anxiety attack.... :(. Thanks so much for your response.
You need to get the scope, as many said its not pleasant but it can be life saving. My husband has cirrhosis stage 4 caused from hep c from a blood transfusion back in the late 80s.
We had no idea or really any signs of any complications. We found out about it all when he went in for a minor umbilical hernia surgery. My husband has always been healthy looking and feeling, when u look at him u wouldn't be able to tell his liver is that bad aside from mild acites in the abdomen.
My point is he didn't feel bad or look bad either but had the scope done and had 8 bands put on. They were so enlarged they were oozing blood just a little if they had burst I've heard its a 50/50 survival chance. We have to go every 3 weeks right now until dr has most banded and then or will be every 6 months.
Thanks Ralph. It helps me to have knowledge. I live in Nebraska, the center of the country, USA. I have a question about vitamin supplements also. In the literature my liver doc gave me, it mentioned adding supplements of vitamins A, D, K and Thiamine. I bought Centram Silver and also Vitamin D and K as the Centram didn't have 100% of the daily allowance.
I have now read some posts saying extra vitamins are bad for a cirrhotic liver. Who is right? Ni have six more weeks of labs once a week, so will let the clinic know I have started supplements. I think I will post this question as a new question on this forum also.
the scarred liver causes blood flow problems, veins start to swell up and if they swell enough they burst. sometimes its a small vein and you might notice black stools and not much else. sometimes its a large vein and heavy bleeding occurs and fills the stomach and then its vomited up,people can be bleeding heavily from both ends. if heavy bleeding occurs its a medical emergency for sure, because usually a poor liver leads to thinner than normal blood and veins don't stop bleeding easily if burst.
The banding is literally placing bands around the veins, after a while they drop off I think.
Im not sure if you are from the UK, but a well known Politian called Charles Kennedy died recently because of such a bleed. He never stopped drinking, keep in mind the people who keep on drinking and don't see their doctors regularly are at a big risk from these sort of events. If you stick with your new life style and keep on top of things you should be fine for years yet. Stay on top of it.
What does banding entail Ralph? What are the signs of a bleed out? Coughing up blood? How does it happen? Thanks!
And continue PT and exercise as tolerated daily....
Hello! Mi had a good week. My labs are still great, platelets almost normal. Visit with gastro liver specialist was encouraging. They all commented how much better I look form six weeks ago. I have a copy of my liver biopsy. Pretty straight forward. I asked about my meld score. Six weeks ago it was 16. Tuesday they recalculated it at 11. The PA talked to me forquite awhile. She said everything was going in the right direction and if I continue alcohol free and keep a natural, low sodium diet I should be able to stabilize my cirrhosis, if not begin to reverse it.
I do have a question for the forum. The liver doc wants to do an endoscopy to check on PHT and varices soon. He explained using a beta blocker or banding if worrisome varices are present. My cardiologist feels I should wait three months and just switch from the current beta blocker I am on to one preferred for PHT. I am feeling great and still have ITP and an idiopathic condition where when I have an infection, my kidneys fail, my labs go nuts, etc. She felt it wasn't a good time to take the possible risk of infection an upper GI poses. I saw the hematologist yesterday. She agreed my recovery is strong right now. Cut the prednisone to 10 for the next week. Said barring complications, I should be off steroids for my platelet condition in six weeks. She agreed that I could avoid the endoscopy for six weeks and then we could reevaluate depending on if my great labs hold up.
I understand how serious varices are. I just feel an upper GI is a risk and I feel like I am going looking for a problem when I appear to be healthy, feeling great and problem free right now. Or maybe I am just afraid of what the scope will reveal? I would love thoughts from fellow cirrhosis sufferers.
Aubrey. Just want say Congragulations for deciding to change your life. Only good things can happen from here on out.
Please keep us posted
Thank you so much Lynn! I have to stay positive. Even when I am told there is no chance, I can't have a negative outlook. Thearticles look very helpful. I really feel great, mentally, physically, emotionally, spiritually. I want to stay this way as long as possible. It feels so good right now. I read your quotes from the articles and will look them up to read the whole thing now. I am very lucky, my husband is a great supporter of my newly adopted health, alcohol free lifestyle. He has joined me in my lifestyle changes. We are trying to live every day with gusto! I will post back after this week's doctor apoointments. Thank you again!
I am not Hector obviously but I did find this I though twould be helpful
The Reversibility of Cirrhosis
Here, we reviewed the available evidence for the potential reversibility of cirrhosis in various types of liver disorders. In summary, we emphasise the following points:
Currently, the most reliable strategy for reversal of cirrhosis is the treatment of the underlying aetiology. However, treatment of the underlying cause is not feasible in all the patients with cirrhosis.
Reversal of human cirrhosis is probably a slow process and may take several years.
Not all patients with cirrhosis have a reversible disease. Patients with cirrhosis can be categorised into different stages. Patients in the earlier stages of cirrhosis are more likely to witness the reversal of cirrhosis. Although the point at which cirrhosis is irreversible is not established, it appears that cirrhosis becomes irreversible once septal neovascularisation happens and portal pressure increases significantly.
and also from the same article
Clinical Evidence of Reversibility
Regarding alcoholic cirrhosis, achieving and maintaining abstinence has led to significant regression of fibrosis and possibly early cirrhosis. In a retrospective French study, complete abstinence from alcohol for at least 6 months was associated with regression of cirrhosis in 8% of patients.
I also have cirrhosis diagnosed in Jan 2008 mine is from Hep c I recentk\ly treated an tomorrow will be tested at 12 week after I finished treatment to see if I am hep C free and also have an oportunity for my liver to possibly heal with time
There is hope believe it
Hi Hector, can you please comment on Ralph's posting of July 23? I see the hepatologist on Tuesday and the hematologist on Thursday. I still feel great. I will post the results. Thanks so much!
yes get all the info you can, you get the bet results if you manage your condition. its not so hard to learn what the bloods mean etc, you will be an expert of your own health in months!
Because of the low Platelets which is indicative of Portal Hyper tension the liver doc wants to do a Upper GI endoscopy. He is looking to see if you have any veins that are starting to bulge because of the back pressure from the scarred liver. If there is any they can "band" them and give you beta blockers to lower your blood pressure. obviously a burst vein can be life threatening, so this is your immediate concern with you liver numbers so good.
the endoscopy is where they put a camera down the throat to check for veins bulging, I'll be honest nobody says it was fun! most are sore a few days after.
If you can imagine your average bath sponge, get a hose pipe and put it right up against it, the water would flow through all the holes and the hose pipe wouldnt start to bulge or build pressure. Now replace the sponge with a brick, the water would not be able to flow very well and the hose pipe will start to build up pressure and bulge. thats pretty much what happens with a scarred Liver and the veins attached to it.
Although there is enough left of your sponge to produce enzymes and proteins you still have scarring that is restricting the flow through it.