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spleenectomy with Hep C
I have Hep C, ITP, cirrhosis and Polycythemia Vera. I am in the stage where I have to make a decision on going on spleenectomy or stay in limbo to wait for the worse. I have enlarged spleen and liver. My question is if a spleenectomy will really help or is this ITP being caused by the Hep c and at the end removing the spleen wont help at all. Also, I have relapsed for over 6 months on my hep c and am not being treated with Interferon due to my low platelet count. Please, I need answers and comments.
Thanks for the advice about the varices. When they saw varices on my last ultrasound, the doctor wanted to do the endoscopy. He says that if they require banding, he'll just go ahead and do it during the endoscopy. Just in case, I'll be sure to bring tums!
Michael and Kathleen. Thanks for the insight on what you are going through. It gives me some questions when I see my doctor on the 22nd. I have had many scopes and have been banded many times. I go again in March. I haven't had to be banded for over 6 months. If you do get banded, be prepared. Sometimes you get terrible heartburn from the gas, so have tums or something. I also got a rx for codeine. Lay on your left side, it will help.
Geri
Geri
Thank you so much for you responce. I have already tryed other treatments and they have not worked. My counts have gone from 5,000 to 58,000 and now they are dropping again. Last test showed 32,000.
This has been a rollercoster ride sence Aug, 2004. Now I find out my Red blood cells are to high and they are taken blood out each week. Every time I go to the doctor each week something new happens. I have a 50/50 chance that this will work and if it doesn't, oh well I will deal with it. Thank you so much for your responce and good luck with your treatments.
This has been a rollercoster ride sence Aug, 2004. Now I find out my Red blood cells are to high and they are taken blood out each week. Every time I go to the doctor each week something new happens. I have a 50/50 chance that this will work and if it doesn't, oh well I will deal with it. Thank you so much for your responce and good luck with your treatments.
I am sorry but I don't have any suggestions for you other than to be very diligent in your choice of a physician. Your situation is quite complicated and I don't know enough to even hazard a guess as to how you should proceed. My best advice is to get to a doctor who you totally trust and go with his/her advice. I wish you good luck. Mike
My experience may be helpful. I'm 28 and have autoimmune hepatitis (diagnosed 1998) and ITP (1998), and I had a spleenectomy in 2001.
- My platelets at their highest (without prednisone) hovered between 18,000 and 20,000. I had previously been on prednisone for the autoimmune hepatitis, and my platelets were at around 40,000 when I was on 60 mg. When I had my liver biopsy in 1998, they upped my prednisone to increase my platelets to 60,000 to reduce the bleeding risk for the biopsy.
- Subsequently, I went into remission for the autoimmune hepatitis and went slowly off the prednisone completely (and did not want to continue taking it for the ITP). In 2001, my platelets crashed to 12,000 then 8,000 and at the lowest point were at 1,000 which is when they decided to do the spleenectomy (I was transfused a few times, but this is not a good treatment option according to the doctors because it can end up exacerbating the ITP in the long run and besides the platelet transfusions never put my platelets above 20,000 - they did this only for emergency because my platelets were at 1,000).
- I was not a candidate for Win Rho for treatment because my blood type is RH- and Win Rho is only for RH+. Before the spleenectomy, I had gamma globulin and was put on 100 mg of predisone for 2 weeks before the surgery (both to up my platelet count so that I was safe in terms of bleeding for the surgery). - I had the spleenectomy, and after the surgery, my platelets shot up to over 300,000. However, after the surgery, I got blood clots in my portal vein (now I know that this was most likely caused because of liver cirrhosis from the autoimmune hepatitis and the fact that I had reduced blood flow in my veins). This was a very serious complication of the surgery at the time. They discovered I had blood clots about a week after the surgery when I took myself to the emergency room because of extreme pain and vomiting (my pain from the surgery was not bad and had already began to decrease, so I knew something was wrong when I was in intense, incredible pain about a week after surgery and the vomiting started).
- My platelets have remained great since the surgery (always have been over 150,000). However, my recent ultrasound showed varices in my esophagus (again a complication of cirrhosis), and I'll be going in for an endoscopy in a few weeks.
My recommendations to you are (based on what my hematologists and hepatologists have told me throughout my treatments) are:
- If your RH+, ask if Win Rho is an option to treat the ITP
- Ask if gamma globulin is an option (though this is an expensive treatment that is normally not approved by insurance unless other treatments, i.e., predisone, etc. have failed)
- If your platelets are above 40,000, spontaneous bleeding is usually not an issue. It is usually only an issue if they fall below 20,000. Ask your hematologist if treatment is necessary (especially if a spleenectomy is necessary because it's major surgery and you have other medical issues).
- If you do have the spleenectomy, be sure to have your hepatologist, hematologist and surgeon consult with one another and ask specifically about the possibility of varices and clotting complications if you have cirrhosis from your Hep C because I'm sure they'll want to monitor you after the surgery more closely if you have cirrhosis (I really wish I had been aware of the clotting possibility before my surgery and that my surgeon was informed before I had the very serious complication which ended up leaving me hospitalized for 2 weeks).
I hope this has been helpful!
Kathleen
- My platelets at their highest (without prednisone) hovered between 18,000 and 20,000. I had previously been on prednisone for the autoimmune hepatitis, and my platelets were at around 40,000 when I was on 60 mg. When I had my liver biopsy in 1998, they upped my prednisone to increase my platelets to 60,000 to reduce the bleeding risk for the biopsy.
- Subsequently, I went into remission for the autoimmune hepatitis and went slowly off the prednisone completely (and did not want to continue taking it for the ITP). In 2001, my platelets crashed to 12,000 then 8,000 and at the lowest point were at 1,000 which is when they decided to do the spleenectomy (I was transfused a few times, but this is not a good treatment option according to the doctors because it can end up exacerbating the ITP in the long run and besides the platelet transfusions never put my platelets above 20,000 - they did this only for emergency because my platelets were at 1,000).
- I was not a candidate for Win Rho for treatment because my blood type is RH- and Win Rho is only for RH+. Before the spleenectomy, I had gamma globulin and was put on 100 mg of predisone for 2 weeks before the surgery (both to up my platelet count so that I was safe in terms of bleeding for the surgery). - I had the spleenectomy, and after the surgery, my platelets shot up to over 300,000. However, after the surgery, I got blood clots in my portal vein (now I know that this was most likely caused because of liver cirrhosis from the autoimmune hepatitis and the fact that I had reduced blood flow in my veins). This was a very serious complication of the surgery at the time. They discovered I had blood clots about a week after the surgery when I took myself to the emergency room because of extreme pain and vomiting (my pain from the surgery was not bad and had already began to decrease, so I knew something was wrong when I was in intense, incredible pain about a week after surgery and the vomiting started).
- My platelets have remained great since the surgery (always have been over 150,000). However, my recent ultrasound showed varices in my esophagus (again a complication of cirrhosis), and I'll be going in for an endoscopy in a few weeks.
My recommendations to you are (based on what my hematologists and hepatologists have told me throughout my treatments) are:
- If your RH+, ask if Win Rho is an option to treat the ITP
- Ask if gamma globulin is an option (though this is an expensive treatment that is normally not approved by insurance unless other treatments, i.e., predisone, etc. have failed)
- If your platelets are above 40,000, spontaneous bleeding is usually not an issue. It is usually only an issue if they fall below 20,000. Ask your hematologist if treatment is necessary (especially if a spleenectomy is necessary because it's major surgery and you have other medical issues).
- If you do have the spleenectomy, be sure to have your hepatologist, hematologist and surgeon consult with one another and ask specifically about the possibility of varices and clotting complications if you have cirrhosis from your Hep C because I'm sure they'll want to monitor you after the surgery more closely if you have cirrhosis (I really wish I had been aware of the clotting possibility before my surgery and that my surgeon was informed before I had the very serious complication which ended up leaving me hospitalized for 2 weeks).
I hope this has been helpful!
Kathleen
I relapsed after six months. I have very low platletes. My lowest during treatment was 32,000. One time I asked my doctor why don't you just remove my spleen. He said I would probably bleed to death. During treatment my platletes bounced all over the place. A high was 60 something. My last labs they were 37.
Best wishes to you.
Geri
Best wishes to you.
Geri
Hi Michael, I'm sorry I can't offer you any advice except to say that there are many others here with personal experience or knowledge of your condition who will be along shortly to help you. I hope you find enough information to help you make the right choices. Very best of luck to you.
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