Esophageal Varices

[Drea2258]

My husband was diagnosed with cirrhosis in July by liver biopsy. He had been followed with ultrasounds and bloodwork after a surgeon who performed a hernia surgery found an enlarged portal vein last November. The ultrasounds showed a slightly enlarged liver and spleen but no nodules etc. He did have elevated LFTs and low platelets in his bloodwork. He had been a heavy drinker but the cirrhosis was also caused by fatty liver. In the last year he has purposely lost 51 lbs. He eats very healthy now, stopped drinking, is very active and works full time. His MELD score was 15 originally and dropped to 13 in a 3 month period. On Halloween this year, he was admitted to his transplant hospital with bleeding esophageal varices. They were grade 1-2 found on endoscopy after his diagnosis. He had the banding done and is now on meds to decrease portal pressure. His MD said hes not appropriate for the transplant list. Prior to this episode he was diagnosed with compensated mild cirrhosis. His child - Pugh score places him in class a. Since the bleeding, I have been reading that technically he has decompensated cirrhosis. I am a health care professional myself and I'm so scared for his continued health. He doesn't even appear sick. The MD said the cirrhosis was caught early. It's confusing because if it's early then why did he get these bleeding varices that indicate end stage disease? His LFTS are all within the normal ranges now, platelets are 113-123,000 up from 60000, and his bilirubin continues to improve as well. He appears to be compensated based on his bloodwork but not on the bleeding varices. I'm petrified that he's going to need a transplant in the future. Any advice is greatly appreciated

[Dee1956]

Dear Drea my thoughts and prayers are with you.  I am hoping that your husband will improve like others on here have done.
He is so young I would hope that with changes to his diet and lifestyle his body is strong enough to recover.
31 is so young.
Dee

[Dee1956]

I agree with Livelife, I think that your story could help other people.  When I was diagnosed with HCV and immediately after cirrhosis in 2007/08 I thought it was a death sentence.
There was no one to discuss it with, I didn't know anyone with this problem.  No one I know knows anyone. I am still the only one in my group of family cause I sure don't have friends anymore, well not physical ones :).

If I had not found this forum and all the wonderful people here I don't know what I would have done.  I would not have made it through tx.

Kim I admire you so much, you always say the most encouraging insightful words.
Take care
funny I don't even know what the question is, I just saw what Kim wrote and responded

[Livelife777]

I want to wish everyone good health in the New Year.  Thank you all for sharing your stories of courage, strength and hope.  Personally I'm so inspired and encouraged that this disease can be fought and overcome.
It takes a lifetime of commitment which brings rewards greater then any
feeling of accomplishment.  Kinda gives faith to the idea that with effort, perseverance, and a sprinkle of good luck all things can change for the
better.  We should all feel very proud.
Andy, I just read that you are starting Harvoni.  I can tell you that I began
Tx with the new Sovaldi almost a year ago and did reach SVR.  It truly changed my life in so many positive ways and so very happy to finally feel
healthy and alive.  You will be joining Lynn along the way and I will be
watching your progress as this disease is finally defeated.  Good luck and
warm wishes sent to both of you.
.....Kim
Andy, you should consider putting your experiences on paper.  It would give
so many reason to want to live.

[ralph2014]

Andy, your an amazing guy for taking so much effort to actually be posting such helpful stuff

You have been through the mill, I find your health issues suffered terrifying! I pray I dont have cirrhosis, im not sure I could face all those terrifying complications!

[Dee1956]

Andy, thank you so much for sharing this wealth of information.  I really appreciate.  As I was reading the posts I was thinking of you and how you turned your health around.
I was going to find the post that you had written, then I came to your post.

Randy, great advice, everyone is so wonderful on here, so supportive, what a blessing this site is.

Drea, hang in there, it is quite a shock to hear of a 31 year old with cirrhosis. I am sorry.  It does get better with time.  Andy is a good example, he has a good diet and has turned things around.  I hope the same for your husband.
My thoughts are with you and yours. Dee

[andyhawaii123]

I can tell you from experience, after bleeding out 3 times, once a Mallory Weiss Tear, once lower GI Bleed and once 10 varices burst. I suffered from every known life threatening complication of Portal Hypertension short of Kidney Failure. What saved my life was a procedure known as TIPS (Transjugular Intrahepatic Portosystemic Shunt) placement (aka DIPS), where-in they bypass a percentage of the blood pumping up the Portal Vein from the digestive track into the liver.

When Scar tissue builds up in a cirrhotic liver more blood is pumped in than the liver can process and pass thru to the Hepatic Vein. So it backs up in the Portal Vein (hence "Portal Hypertension) When this blood seeks another route to the heart the next veins are those that line the Stomach and Esophagus. When these veins become enlarged and swollen they are called Varices, and are very susceptible to rupture.  The TIPS or DIPS procedure bypasses these veins alleviating Pressure in the Liver and the Varices.

With increased Portal Pressure fluid and an injured liver not properly synthesizing proteins and/or not cleaning toxins as it normally would, you experience all kinds of chemical imbalances affecting many systems.

It does not properly supply red blood cells with clotting factors (Thrombocytopenia) - In turn your Prothrombin Time (Time it takes your blood to clot) increases, greatly affecting your INR number and MELD score.  This "Thin Blood" and increased pressure causes nose bleeds, minor cuts that just keep bleeding and the red spots and spider veins on your skin. In a worse case when mixed with portal hypertension it can cause massive bleeding in the GI track which is extremely hard to control.

   Your liver leaks out Bilirubin (a waste product) into the blood because it is not properly producing Albumin, greatly affecting your MELD score. This retards production of Creatinine (again upping you Meld score) in direct correlation to your Raised  ALT Enzyme.

Acites (Swelling of the Abdomen) is another common symptom of Portal Hypertension. The increased pressure squeezes fluid thru the membranes of organs into your abdomen, and can require going to the Hospital's Interventional Radiology for Paracentesis (removal of the abdominal fluid with a large needle guided by ultra sound).  

In the Year it's been since I was diagnosed, the Tips procedure was the single most factor in the overall improvement of my condition. Every doctor and specialist I see tell me it most definitely saved my life. After 2 Months in the Hospital and 5 months in a 24hr Skilled Nursing, I walked out the door on my own in June.

I eat nothing but  healthy whole foods (No Salt/Low Fat), Exercise every day, take meds as prescribed and don't drink. My MELD Score has dropped from a 24 to 7 and I am no longer on the ACTIVE liver transplant list (Still registered and qualify if needed), and my liver has gone from Decompensating to Compensating. The TIPS Procedure alleviated the vast majority of my secondary conditions. I would highly recommend you seek out the consultation of an Interventional Radiologist who regularly performs TIPS procedures. You do not what Portal Hypertension become a major secondary problem.

With regard to the "Transplant list.. recipients for a transplant are selected solely on the MELD scoring system. Most people receiving transplants are in the high twenties and into the thirties.  MELD Scores can changer rapidly, and your Hepatologist should be doing blood labs every month or two (Including Prothrobomin Time and INR calculation so that his MELD score always reflects his current condition. Compensated/Decompensated as well as "Stages" of liver disease are used my your doctors for level of care reference only. The Mayo Clinic Child-Pugh scoring is not used by the National Organ Transplant Allocation System any more.

I hope your husband's condition is doing better and back on it's prositive trend. His total commitment to getting better makes the world of difference... I know it did for ne and others one the site. I will put you in my prayers and wish you all the best

Andy

[Livelife777]

My best to Crossroadsec and Drea.  Sometimes in life you suddenly get thrown a curveball, but its how you catch it that matters.  My best to both of you and hope these issues resolve with good results.
Best Wishes
.....Kim

[Drea2258]

Thank you Karen. It's wonderful to have all this support. He's only 31 so it came as quite a shock but the doctors say he is in the best possible shape given his diagnosis and everything that's happened. Happy Holidays to you too and I'm very happy you are doing better yourself!!! :)

[crossroadsec]

Many people live long lives once they get back to a compensated state. When I first came on Medhelp, I was a mess - lots of diuretics yellow as a daffodil. I treated for HCV, weathered a few bleeds and bandings, got the Nadolol doseage right and have been eating right and even run 5Ks.

They found a liver tumor this year so I'm dealing with a high MELD and all that. All of this kind of talk terrified me in the beginning. Now I see that with the right treatment, years can be added to a person's life. Even with ESLD.

All my best during the holidays.
xo Karen:)

[Drea2258]

Thank you everyone. I appreciate all your feedback and support! His last md appt with the hepatologist went well. He said my husband will probably never need a transplant as long as he keeps up a healthy lifestyle. INR is still a little higher at 2.0 but is coming back down. Before his bleed, it was normal. The doctor changed his propranolol to nadolol and wants to get his heart rate about 25 points lower. We have another appt January 16. The MD, who is also one of the most renowned hepatologists, also said though this was decompensated event he expects my husband to return to a compensated state:) he has a MRI and more bloodwork in January too!

[rpooo]

Hello and welcome to Medhelp.

It’s great to hear how well your husband’s recovery has been going. It certainly sounds like you have been doing your homework learning all you can to advocate for him, he is lucky to have you at his side! I agree that that it is strange to have a bleed with grade two varices, I was diagnosed with grade three varices 4 ½ years ago yet have never had a bleed.

Often a beta blocker called propranolol is prescribed not with the primary intent to lower blood pressure but to lower the heart rate. His HR at rest should be between 55 -60. A strong enough dosage should be prescribed to ensure this rate is maintained. How low his blood pressure drops will not be of concern unless symptoms manifest immediately after the dosage has been prescribed. These symptoms are as follows:

 Dizziness or lightheadedness.
 Fainting (syncope)
 Lack of concentration.
 Blurred vision.
 Nausea.
 Cold, clammy, pale skin.
 Rapid, shallow breathing.
 Fatigue.

Another thing to consider is vitamin C with Rose Hips and Hesperidin. Swanson’s Ultra C Formula 500mg should serve him well. You can buy this OTC. Vitamin C is a nutrient that is needed to manufacture the elastic fibers collagen and elastin, which keep the walls of the veins and arteries flexible and strong. This helps the vascular walls resist pressure and contract after dilating due to blood flow. It also keeps the valves of the veins from leaking.

In persons with cirrhosis vitamin C has been known to promote HCC (Heptocellular Cacrcinoma) though this is less concerning with individuals that have developed alcoholic cirrhosis vs. cirrhosis developed from HCV.

Please discuss these options with his Hepatologist. He should also caution his lifting. I hope this information can further help his recovery, it sounds like you make a good team!

Please feel welcome to post any further question or to seek support along the way. This community is filled with wonderful and knowledgeable people wanting to help. Again welcome to MedHelp!

Best regards,
Randy

[linda803]

My husband had his has had banning because of portal hypertension twice in early 2011, Then on may 13, 2011 he had a bleed out, he was on life support for 5 days and in hospital for 20 days, He has had bleeding nose, bruising, vomiting, cancer of the liver which they burn with a probe, He has been on the transplant list for almost 4 years, His meld is 17, He has ESLD but is sicker than his meld score, Because your husband has had portal hypertension he has to be careful of bleed outs, If that ever happens call 911 right away,, I don't want to scare you but I was never told about it, good luck I wish both of you the best

[Livelife777]

Hi there.   I'm somewhat curious as to your Drs findings.  Am hoping that your husbands healthier lifestyle will reverse any damage done.
Should you care to respond
Thanks
.....Kim

[Drea2258]

Thank you:) it's just very strange where he was diagnosed with mild cirrhosis and had grade 1-2 varices that he had this bleeding. His spleen is also only mildly enlarged, liver slightly enlarged  and ultrasound otherwise normal. Before the biopsy they actually ruled out cirrhosis but the biopsy was positive for cirrhosis. We have an appt tomorrow with his hepatologist so hopefully we will get some positive news/ answers.

[fntn]

It sounds like your husband has made the commitment towards a healthy liver and that's a huge step in the right direction. Others have rebounded to a much healthier status and no longer require a LT. Let's hope your husband continues his healthy choices and maybe he'll be another case. There are others here in this forum that may drop in with their stories.

I have decompensated, ESLD with a giant spleen and GI bleeding. But my liver numbers as amazing good. So it can be a strange disease for sure. So don't lose hope and keep on the good path.