I'm back with more questions! It's been 10 weeks since I had to end SOC tx, I had new labs done last week and received results today.
My platelets did go up from 31 to 53 but have never gone higher than 82 (nine months ago).
My question is how do you determine the cause? Is it decreased production, increased destruction of platelets or does it have something to do with my spleen? Or is it just the progression of damage to my liver?
In my labs from 10 weeks ago my AST and ALT were in the 50's but this test shows they went up to the 200's. And my Alk Phos went from normal range to 127. Other increases included MCV, MCH and globulin.
I go in to see my new PA Wednesday and want to have my list of questions in hand so any input would be greatly appreciated. Thanks, Rhonda
What was your platelet count before starting treatment? Your platelet count should return to the previous value before treatment. You say the your biopsy indicated stage 3.5 fibrosis. (There is no .5 only stage only 0-4). If you normally have a platelet count below 100,000 you are very likely to be stage 4. Cirrhosis. As only at stage 4 does the scarring of liver interfere with the normal flow of blood through your spleen and liver which effects your platelet count unless you have other medical issue that you have not mentioned.
Due to the advanced nature of your liver disease you should be seeing a hepatologist or at least a gastroenterologist and have a complete evaluation of the status of your liver disease. A PCP or a PA is NOT qualified to treat you no matter how helpful they have been. Seeing physicians who do not fully understand liver disease can cause you to waste valuable time as they don't understand the critical nature of liver disease and all of it ramifications. For your own sake, get a referral to a hepatologist or at least a gastroenterologist soon.
I see that you stopped treatment but I don't see why. Didn't you respond to SOC treatment or did you encounter side effects that caused you to stop treatment?
The difference between advanced fibrosis and cirrhosis is a major milestone are you need to know exactly where you stand as your options are to what you need to do at this point after failing treatment may be critical.
• 0 = no scarring
• 1 = minimal scarring
• 2 = scarring has occurred and extends outside
the areas in the liver that contains blood vessels
• 3=bridging fibrosis is spreading and
connecting to other areas that contain fibrosis
• 4=cirrhosis or advanced scarring of the liver>.
Platelet counts will fall below normal value if you have an enlarged spleen and portal hypertension. Blood flows from the spleen..... through the portal vein.... then through the liver. Scar tissue in the liver (cirrhosis) interferes with that blood flow. (Scar tissue interfering with the bloodflow through the liver-- causes pressure to build up in the portal vein (portal hypertension), and the spleen to enlarge (splenomegaly). These are two common complications of cirrhosis of the liver. Stage 4.
What does your doctor say?
Some patients with cirrhosis have enlarged livers and/or spleens.
The obstructed flow of blood through the portal vein (portal hypertension) causes the spleen to enlarge by causing an increase in pressure inside the vessels of the spleen. The spleen stores red and white blood cells and platelets (fragment of cells that are used to clot blood). An enlarged spleen traps platelets lowering levels in the blood which can lead to the inability of blood to clot. This is called Thrombocytopenia and is common in people with cirrhosis. Thrombocytopenia or thrombopenia in short is the presence of relatively few platelets in blood. One common definition of thrombocytopenia is a platelet count below 50,000 per microliter
A doctor can often feel (palpate) the lower edge of an enlarged liver below the right rib cage and feel the tip of the enlarged spleen below the left rib cage. However, x-rays and other imaging tests may be used to determine how large the spleen is. A cirrhotic liver also feels firmer and more irregular than a normal liver.
What happens when the spleen is enlarged ?
Spleen is an important organ of the lymphatic system. It is found on the left upper side of the abdomen, between the 9th and 12th rib. The primary function of the spleen is to produce lymphocytes and plasma cells, which are used in humoral and cellular immune defense. Approximately half of the body’s monocytes are stored in this organ. These cells can easily transform into macrophages and dendritic cells, and assist in wound repair. Additionally, the spleen filters the blood and removes all the unwanted materials like cell debris and microorganisms as bacteria, viruses and fungi.
Furthermore, it monitors the red blood cells, eliminating those that are abnormal, damaged or too old to function properly. It also serves as a storehouse for various elements of the blood like platelets and white blood cells. In the absence of the spleen, the body becomes susceptible to diseases caused by bacteria and protozoa, and responsiveness to certain vaccines also decreases.Whenever the normal functioning of the body is hampered by disorders like cancer, anemia, malaria, tuberculosis, amyloidosis, cirrhosis, hepatitis and the like, the spleen becomes hyperactive, and starts entrapping and storing a large number of blood cells and platelets.
As the result, the platelet and blood cell count in the bloodstream begins to fall dramatically. Due to entrapment, the spleen grows in size, and as it grows, it traps in more and more blood cells and platelets. Eventually the overgrown spleen starts capturing and destroying the normal blood cells together with the abnormal ones. These blood cells and platelets clog the spleen and interfere with its normal function.
Thrombocytopenia has many possible causes.
See the following link to learn more.
Thanks, Hector :o). Rhonda had quite a ride and has learned a lot since then. Her local GI pretty much dropped the ball on her; she's in a rural situation and didn't get the attention she deserved/needed then. Hopefully the next time will do the magic.
Rhonda, HectorSF left some really insightful info here for you. Good luck Wednesday, and let us know how it goes--
Copyman: I'm hoping this new PA will have some answers - it's the 3rd one in 3 months. I won't go back to the same GI and his office is the only one in this area. At this time I can't afford a Hepatologist and there are only 2 in Idaho and it's an 8 hr drive.
Hector: 82 was my platelet count before tx then continually dropped during to a low of 31 in my 8th wk of tx. My pathology report from bx indicated stage 3/4 (early stage cirrhosis) and my GI said it was in between stage 3 and 4 (thats why I indicated stage 3.5). Interesting info on the spleen, thank you.
I hope the new PA does the trick for you. My hep doc died in February. He was fabulous and took great care of me...consider I was diagnosed with hep C and cirrhosis in 1992, treatment never worked for me, and I am still here 19 years later and am well-compensated. When he died I couldn't find a doc in my area who I liked. I am using an NP who is fantastic. She attends every conference, was a clinical research nurse in a large gastro practice and when she runs in to trouble she uses Ira Jacobsen, one of the top hep docs in NYC. In fact this NP really knows what she is doing. I hope the same for you.
Many people don't realize that the vast majority of patients in the USA live many hours from a large medical center where a hep doc is readily available. There are plenty of good NPs ourt there, you just have to take some time to find one. You and I are lucky that NPs in our states are allowed to write prescriptions, etc..I love mine.
i would want to know if the new PA has good rapport with a doc in Boise or somewhere that is using the new drugs. Can he/she pick up the phone when you are experiencing a side-effect and get an answer pronto?
Sorry to hear you lost your Dr. and I agree with you about NP's, my nurse was great during tx but she was treating 25 other people at the time so she had her hands full. Personally I don't think she got much support from the GI.
My NP is in her own practice and treats many hep C patients. In fact most of her patients are people with cirrhosis who were patients in the gastro practice where she was a clinical trial nurse researcher. They followed her to her own practice. She is about to start some of her non-responder patients on the new drugs in the next few weeks. She wants to start them before she starts me because she knows first hand how they reacted to their last treatments while I am new to her.
Good luck with your Dr. appt. today. Hope your get the answers you need for your dilemma. Undoubtedly, you have some inflammation going on, and it would be good to find the source and quelch it. Easier said than done, I know. Been taking any OTC tylenol, alleve or anything. Chinese medicine?
Hopefully your new dr. will study the probs you had with your last tx and determine how to allieviate or deal with them better so you are more able to stay the course.I also agree with SusieS2010 about NP's. I dealt with mine 99 % of the time, and felt i was really in capable hands. Not only that, but she had a real "human" touch and always made me feel like i ws the most important patient she had (and she had loads of them) for each and every office call.So combined with that and the fact that she was in constant communication with top notch liver centers here in MN (U of M and Mayo), I really got top notch care.
Thanks everyone for your response, support, and for sharing your knowledge and opinions.
Hector, that blog site had a wealth of information in it and I felt confident in the questions I had for the new PA.
Unfortunately the appt yesterday didn't turn out as I had hoped and my questions never got resolved. But on the positive side I know more about this disease than I did 2 days ago thanks to all of you on this forum.
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