Aa
hep c, enlarged spleen, low Platelets
hi
i have hep c for over 27 years , went on 3 treatments of interferon with no success, but know platelets are at 39,000 and wbc 2.9 and they tell me my spleen is huge, but my liver function seem to be okay, but a ct scan show signs of portal hypertension and fatty liver , hematologist tell me to remove the spleen, hepatologist tells not to remove spleen ,but want me to lose 30 pound to go on a new treatment coming out this fall???? then they tell me i will see the liver transplant doctor before starting any treatment, this is a nyc hospital i rather not name at this time which i am being seen at,, need some answer????
i am planning on going to hopkin and penn hospital 2 opinion
i have hep c for over 27 years , went on 3 treatments of interferon with no success, but know platelets are at 39,000 and wbc 2.9 and they tell me my spleen is huge, but my liver function seem to be okay, but a ct scan show signs of portal hypertension and fatty liver , hematologist tell me to remove the spleen, hepatologist tells not to remove spleen ,but want me to lose 30 pound to go on a new treatment coming out this fall???? then they tell me i will see the liver transplant doctor before starting any treatment, this is a nyc hospital i rather not name at this time which i am being seen at,, need some answer????
i am planning on going to hopkin and penn hospital 2 opinion
there are many possible causes of enlarged spleen and low platelets other than cirrhosis - seems youve been having spleen problems for quite some time - you may have progressed to cirrhosis by now - the best thing a hep c patient with possible cirrhosis can do is strongly request the tests that determine meld - these are true liver function tests - how has your red count been running ----------
When the spleen enlarges, it traps and stores an excessive number of blood cells and platelets thereby reducing the number of blood cells and platelets in the bloodstream. This process creates a vicious circle: the more cells and platelets the spleen traps, the larger it grows; the larger it grows, the more cells and platelets it traps. Eventually, the greatly enlarged spleen also traps normal red blood cells, destroying them along with the abnormal ones. In addition, excessive numbers of blood cells and platelets can clog the spleen, interfering with its functioning. An enlarged spleen may outgrow its own blood supply. When parts of the spleen do not get enough blood, they may become damaged, causing them to bleed or die.
When the spleen enlarges, it traps and stores an excessive number of blood cells and platelets thereby reducing the number of blood cells and platelets in the bloodstream. This process creates a vicious circle: the more cells and platelets the spleen traps, the larger it grows; the larger it grows, the more cells and platelets it traps. Eventually, the greatly enlarged spleen also traps normal red blood cells, destroying them along with the abnormal ones. In addition, excessive numbers of blood cells and platelets can clog the spleen, interfering with its functioning. An enlarged spleen may outgrow its own blood supply. When parts of the spleen do not get enough blood, they may become damaged, causing them to bleed or die.
wonderfu...I have an enlarged spleen with very low blood platelet...I didn't really understand it..however now realize it could be assiciated with my liver..now I am scared...going to get back to a doctor who is a blood disorder specialist first who seen me in hospital and seemed compassionate...gonna have to get over the bf right now...and not waste any more energy on him...as I need all my energy for myself and my children.....thank you all..for answers on my other post.....
thanks for some of the responses
let me start you off with some more info, i don t have a meld score, i had a biopsy 5 years back at stage 2-3 with fibrosis, i had low platelets for 10 year 86,000 for the past years keep getting lower (39,000 at least 1 1/2 years ) been leveling at that #... i do have high tumor marker ( but thank god ,no cancers ) i been told that high tumor marker could be the liver regenerating , that what my GI says.. My primary doctor told me to go see the hematologist for the low platelets ( this is when i got worried ) he wanted me to take the spleen out but said i should consult with hepatologist i see.
i do feel fine,losing weight like they asked me, no bleeding and i am very active in line of work and playing with my kids,
but since i have an enlarged spleen the risk are there, but is taken it out the right thing to do at this point or take a chance with the new meds this fall and risk losing liver function????
let me start you off with some more info, i don t have a meld score, i had a biopsy 5 years back at stage 2-3 with fibrosis, i had low platelets for 10 year 86,000 for the past years keep getting lower (39,000 at least 1 1/2 years ) been leveling at that #... i do have high tumor marker ( but thank god ,no cancers ) i been told that high tumor marker could be the liver regenerating , that what my GI says.. My primary doctor told me to go see the hematologist for the low platelets ( this is when i got worried ) he wanted me to take the spleen out but said i should consult with hepatologist i see.
i do feel fine,losing weight like they asked me, no bleeding and i am very active in line of work and playing with my kids,
but since i have an enlarged spleen the risk are there, but is taken it out the right thing to do at this point or take a chance with the new meds this fall and risk losing liver function????
I’m sorry to hear that your treatments were unsuccessful. You’ve had longtime infection, and some of the symptoms you have could be signs of significant liver damage. There are situations in hemotology where spleen removal may benefit a patient, but it is very likely your low platelets and current spleen symptoms are liver-disease in origin, and therefore may not be resolved by simply removing the spleen.
As Bill1954 pointed out, an enlarged spleen and portal hypertension are both symptoms of cirrhosis. Have you had a liver biopsy recently? Liver functions can be deceivingly “normal” even in people with stage 4 disease, so normal LFTs don’t exclude possible cirrhosis.
If you do not have confidence in your physician, seeking a second opinion is a good idea. The suggestion for you to meet with a transplant doctor is one to consider seriously, though, especially if you have additional confirmation of cirrhosis: treatment is less than 50% successful in certain types of patients, especially in those with cirrhosis, and also pose some risks and hazards. Many doctors are not well-equipped to treat patients with advanced liver disease, but hepatologists who specialize in transplant medicine usually have the resources, knowledge, and safety nets necessary.
Perhaps the reason your doctor is suggesting you lose weight while waiting for the new drugs is that it offers you two possible advantages. Treatment failure has been correlated to high BMI, so losing weight will increase your chances of treatment success. Also, the new drugs due to be released next year according to the recent “buzz”, have increased the rates of success significantly, from about 50% in the general population to in excess of 80% cure.
Hopefully your Penn and JH trips will help you find more of the answers that you need. Best of luck to you. ~eureka
As Bill1954 pointed out, an enlarged spleen and portal hypertension are both symptoms of cirrhosis. Have you had a liver biopsy recently? Liver functions can be deceivingly “normal” even in people with stage 4 disease, so normal LFTs don’t exclude possible cirrhosis.
If you do not have confidence in your physician, seeking a second opinion is a good idea. The suggestion for you to meet with a transplant doctor is one to consider seriously, though, especially if you have additional confirmation of cirrhosis: treatment is less than 50% successful in certain types of patients, especially in those with cirrhosis, and also pose some risks and hazards. Many doctors are not well-equipped to treat patients with advanced liver disease, but hepatologists who specialize in transplant medicine usually have the resources, knowledge, and safety nets necessary.
Perhaps the reason your doctor is suggesting you lose weight while waiting for the new drugs is that it offers you two possible advantages. Treatment failure has been correlated to high BMI, so losing weight will increase your chances of treatment success. Also, the new drugs due to be released next year according to the recent “buzz”, have increased the rates of success significantly, from about 50% in the general population to in excess of 80% cure.
Hopefully your Penn and JH trips will help you find more of the answers that you need. Best of luck to you. ~eureka
Seeing a "transplant doc" and getting on the list is good advice, I think. The initial transplant evaluation takes some time, and requires other medical evaluations (cardio, psych), so it would be a good idea to get all that done before treating. My spleen is enlarged too, and the hepatologist told me that removing it is not a good idea and can result in big problems later on.
Good luck to you. You are not alone!
Good luck to you. You are not alone!
If your doctor is trying to prepare you for additional IFN treatment, then perhaps the planned splenectomy is an effort to increase platelet counts; interferon itself can cause thrompocytopenia, and surgical resection of the spleen can increase platelets, possibly qualifying you for additional treatment.
You understand that portal hypertension and platelets at 39,000 are indicative of cirrhosis, right? What has been discussed in this regard? Have you been formally diagnosed with stage four cirrhosis yet?
Do you have a recent MELD score? How about recent results for INR, albumin, bilirubin, etc?
Fatty liver will probably exacerbate your liver disease, and obesity, if present might complicate transplant surgery, if needed.
Good luck, and let us know how things go—
Bill
You understand that portal hypertension and platelets at 39,000 are indicative of cirrhosis, right? What has been discussed in this regard? Have you been formally diagnosed with stage four cirrhosis yet?
Do you have a recent MELD score? How about recent results for INR, albumin, bilirubin, etc?
Fatty liver will probably exacerbate your liver disease, and obesity, if present might complicate transplant surgery, if needed.
Good luck, and let us know how things go—
Bill
Perhaps you could explain the reason for the different doctors opinions. I assume your hematologist believes the platelets are collecting in your spleen and removing the spleen would solve the problem and of course prevent you from rupturing your spleen. What does the hepatologist say?
Welcome to the forum - Dave
Welcome to the forum - Dave
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