Anyone have info on clots in the liver?

[Anne A]

Hello All, I'm haven't posted in a while but keep reading and learning. To those of you who are so helpful I thank you sincerely. Getting to the point, my doctor called today to say the MRI shows a clot in the liver which has gotten bigger in the portal vein. Usually treated with blood thinners but my platelets are 68 and could easily bleed out. Sending a request for an appt. to the Liver Transplant Center to see if they can open it. I need a transplant but probably will not qualify. Also have a small(9mm)cancer spot to add to all this. Wondered if anyone had a clot treated and what they did about it. I knew something was really wrong as my stomach looks very swollen. Of course this is depressing. Thanks for any advice.

[Lynn K]

Hi sorry to read this. Why don't you believe you would qualify for a transplant? I am assuming you have been diagnosed with cirrhosis. Having liver cancer moves you up quite a bit in the list.

Do you know your MELD score?

"Model for End-Stage Liver Disease (MELD) The Model for End-Stage Liver Disease (MELD) is a reliable measure of mortality risk in patients with end-stage liver disease. It is used as a disease severity index to help prioritize allocation of organs for transplant."

https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/

The swollen stomach could be ascities is your doctor aware of your swollen stomach?

Have you treated your hep c yet?

[Anne A]

Lynn, yes on the cirrhosis, F4.Meld score=10, Child Phugh=B---no to treatment for HepC-was approved and my PA has been saying for a year I should do it , was just about to get up the courage when it went from Ultra Sound to Cat Scan to MRI today.
Yes, I'm on Nadolol 20mg, Spironolactone 50mg and Furosemide 20mg. I've been pointing out the swelling, shows not much fluid, never taped. I'm guessing it's back up pressure as Spleen is enlarged, Gallbladder has some signs. Not sure, can't eat much or it hurts my lower stomach. Sure puts me in hopes something can be done. Thanks for reply.

[Lynn K]

Ok then I see why you aren't yet eligible I have read a MELD of at least 12 or even 15 is needed just to be listed but if you did have liver cancer that gives you exception points and moves you up in MELD and on the list.

My MELD is only 7 it was 8. I also take spironolactone 50 mg for edema and a small amount of ascities but that's it. I had grade 3 esophageal varicies that needed banding back in 2012. Also developed gall stones and had my gall bladder removed. Platelets were about 80 to 90 pre treatment and now are around 110 since I was cured. This was my 5th treatment for hep c. I treated back in the 90's with interferon based treatment 3 times. I was diagnosed with cirrhosis with a liver biopsy in January 2008. They say on ultra sound my spleen is slightly enlarged but that goes along with the portal hypertension and the low platelets.

I have read about the medical ethics of your situation being a difficult one to call. If they don't treat your hep c the "hope" is your liver disease will progress making you eligible for transplant then treat the hep c afterwards. The concern is if they treat you now it will stop the progression of your liver disease but you will still have very advanced early decompensated liver disease. So kind of trapped in limbo. But then again with cure there exists hope of some regresion where you could go on to live a relatively normal life. So a real tough decision to make in your situation unfortunately. 

Best to you
Lynn

[Sergey]

Anne, sorry to read this. I guess, if they cannot effectively treat blood clot and liver cancer without liver transplant, then they should include you in transplant list, regardless of MELD or presence of HCV (just a guess).

[Lynn K]

Having hep c does  not prevent people from being placed on the liver transplant list.  If you have liver cancer that does give you extra points on top of your meld score  placing you higher on the transplant list.  My understanding is most transplants occur at a MELD score of greater than 30

[Sergey]

I think, low MELD score does not matter, in cases of transplantation due to liver cancer. Transplantation with F3, without cirrhosis, is possible due to HCC...

[Lynn K]

UNOS uses MELD scorin to determine placement in the transplant list. Number needed will vary depending on which transplant center are working with in busier locations like California the MELD needed can be much higher. For those with HCC exception points are added to the MELD score. I know in Seattle they will not list you with a MELD below 15.

Transplant goes to highest MELD with correct blood type and I assume other biological factors. Of course assuming the patient appears health enough to surviv the procedure. But those not healthy enough to survive likely won't be elligible to be on the list.

http://www.cpmc.org/advanced/liver/patients/topics/MELD.html

How does the liver transplant waiting list work?

Donor organs that become available in the local area are offered to patients on the waiting list of one of the three local liver transplant centers. Occasionally, there is not a good match for any patient at the three centers and a donor liver is sent out of the local area; conversely, we sometimes receive livers from distant hospitals, particularly for the most ill patients.

In general, a donor is matched to a potential recipient on the basis of several factors: ABO blood type, body size, degree of medical urgency and MELD score (Model for End-Stage Liver Disease). UNOS uses a computerized point system to distribute organs in a fair manner. Recipients are chosen primarily on the basis of medical urgency within each ABO blood group. Waiting time is only a factor when patients have the same MELD score.

In summary, the priority of an individual patient on the UNOS waiting list for a donor liver depends on the following factors:

Local versus distant (donor organs are first offered locally within the Northern California/Bay Area)
ABO type (priority is identical > compatible > incompatible ABO blood type)
Body size (the acceptable body range is determined by the transplant surgeon)
Degree of medical urgency as determined by the MELD score (highest priority given to Status 1 patients)

Back to top
What is MELD? How will it be used?

The Model for End-Stage Liver Disease (MELD) system was implemented February 27, 2002 to prioritize patients waiting for a liver transplant. MELD is a numerical scale used for adult liver transplant candidates. The range is from 6 (less ill) to 40 (gravely ill). The individual score determines how urgently a patient needs a liver transplant within the next three months. The number is calculated using the most recent laboratory tests.

Lab values used in the MELD calculation:

Bilirubin, which measures how effectively the liver excretes bile;
INR (formally known as the prothrombin time), measures the liver’s ability to make blood clotting factors;
Creatinine, which measures kidney function. Impaired kidney function is often associated with severe liver disease.
Within the MELD continuous disease severity scale, there are four levels. As the MELD score increases, and the patient moves up to a new level, a new waiting time clock starts. Waiting time is carried backwards but not forward. If a patient moves to a lower MELD score, the waiting time accumulated at the higher score remains. When a patient moves to a higher MELD score, the waiting time at the lower level is not carried to the new level. The clock at the new level starts at 0. (Example: Patient has a MELD score of 15 and has been at level 11-18 for 100 days. With new laboratory tests, the patient’s MELD score is 22. The patient moves to a new MELD level of 19-24. The patient’s waiting time at this new level starts at 0 days). Waiting time is only used as a tie-breaker when patients have the same MELD score.

The four MELD levels are:

greater than or equal to 25
24-19
18-11
less than or equal to 10

[Sergey]

I dont know fully, how system works, but, possibly they should add many "exception points" for people with HCC (just a guess). Otherwise, metastasis may occur with relatively good liver function (and low MELD) and radical "curative" HCC treatment will be impossible.

P.S. Lynn, thank you for information!

[Lynn K]

Actually they said to me at the transplant center sometime they hope their patients will get HCC while they are still otherwise healthy so the will get the exception MELD point so they can get the exception points to qualify for transplant sooner.

Another interesting thingonly A,B, AB, and O matters not the rh factor. And having a less common blood type can be an advantage too because if your blood is less common but a matching organ comes along you would jump past other more ill patients who have a more common blood type.

[Anne A]

I wondered how the "list" was determined. This clears it up some for my confused brain. Doubt I have time to wait as the doctor was more concerned with the clot being bigger in just a few months and how to treat it without blood thinners. I feel pretty good otherwise, just the swollen belly(I'm small so it really sticks out). Perhaps the Liver hospital will be able to help, the radiologist I was sent to said he didn't want to try. Fine with me, rather have honest answers. Thank you both for your thoughts. Lynn,you are one of my hero's. What you have gone through(and many others also on this forum) is amazing. The mental aspect of Hep C and now the realization is enough to shake one's core. I've been so healthy all these years, more than a lot of people get to do." Accept what is, let go of what was and Trying to have faith in what's to come".

[Lynn K]

I only know what I know because I am standing on the shoulders of giants who came before me. One I learn the most from was HectorSF he had hep c and developed cirrhosis. While he was waiting for a transplant he developed liver cancer which eventually the tumor be came so large it was inoperable and he no longer qualified for transplant something about the Milan criteria. He underwent several experimental procedures and finally was able to shrink his tumor enough to qualify again for transplant. He was transplanted within a week after that and survived for the next 1 year and 7 months. Would you believe after all he had been through he had a slip and fall last summer bad enough to cause a bleed in his brain and he passed away as a result. Anyway what I know I learned from his posts on another forum and some questions I asked that he answered for me.

So while people are waiting for transplant they will treat each complication as they arise which I assume they will do in your situation.

Are you under the care of a hepatologist associated with a liver transplant center? Even if you are not eligible right now to be on the list they are best equipped to follow a paitient with advanced liver disease. This also gets you on their radar so that if you do need a transplant they are already familiar with your case. They are also the best to determine the best treatment for you and follow your treatment.

I assume you are having abdominal ultra sounds or similar every 6 months along with blood work including an AFP blood test l. You also should have had at least an initial upperendoscopy and follow up depending on what was found on the initial. You also hopefully have been vaccinated against hep A and B as well as the pneumonia vaccine.

Let me know if you have any other questions.

Best of luck to you
Lynn

[Anne A]

Lynn,this is why I turned to the Forum for some insight from people who have knowledge and experience. The doctor I have just did a AFP blood work but didn't say what it was yet. No hepatologist yet either. As you said at least if the Transplant hospital will treat this problem I will be on their radar. Probably want to do another endoscopy of the throat, last one was a couple years ago no banding then. No shots either. Getting my life in order and telling some of my friends, finding a home for my beloved dog will be the hardest part. Not going "all in" yet but...will keep my spirit up as much as possible. On the brighter side, each day is a gift. Having people to talk to about this is very comforting. Thank you so much for taking time to explain this maze.

[Lynn K]

On my initial upper endoscopy (EGD) I had grade 1 varices so we repeated in two years. On that EGD I had grade 2 varicies so we repeated again in a year which they were grade 3 by then. The option at that point are either a beta blocker with the goal of slowing heart rate to less than 60 bpm to reduce portal pressure but my hr is already less than 60 bpm so we could not go that route so I had 4 EGD's done over the next 4 months to band the varicies. Now I have an EGD every year so far there has been no reoccurrence.

I go the the Swedish Hospital liver center once a year and have blood testing and ultrasound every 6 month plus the annual EGD

As far as I know that will be the plan going forwards unless something changes with my health.

Good luck

[Anne A]

Sounds like you have really good doctors and treatment. The fact that you kicked Hep C ,as you know,probably is your life saver. I sincerely hope no one has to go through anything close to this.New drugs all the time coming out. Thanks for all the details which are important to learn. And the good wishes. 

[Lynn K]

Yup Harvoni saved my life not sure how much longer I would have made it before I decompensated and needed to be on the transplant list hoping for a match before I ran out of time.

[Philadelphia]

Like Lynn I was sliding towards decompensation and had in fact slipped over the edge but clawed my way back. Now I'm cured but I will need the same monitoring protocols.

[Lynn K]

Hi Anne

Any news yet?

Lynn

[Anne A]

No news, all the doctors are probably away due to the holidays. My doctor got a confirmation of request for appt. on Dec. 6th so I expect something after the New Year vacations end. Thanks for asking Lynn. I will write as soon as they say what they plan on doing. Have a wonderful Christmas and New Year to you and everyone on the forum!

[Lynn K]

Yeah so hard to get anything done this time of year. Hope they get you in soon.

I will be doing my 6 month blood testing/abdominal ultrasound and annual upper endoscopy plus liver clinic visit all in January.

Happy Christmas and Merry New Year to you and yours