You posted in your status that your bloodwork numbers were dangerously low. Do you have a copy of those and can you post them? That would help us out.
Platelet transfusion is a type of blood transfusion. Normally when your platelets are <20,000 Drs will want to do a transfusion. Platelets getting that low can be dangerous because your blood is not clotting properly. They should have checked your INR also.
All liver tests within normal range
I'm so exhausted I can't remember how to convert them but he did say if Plt dropped below 5,000 he would stop tx and do platelet transfusions
My dr won't give me much info because he doesn't want to "scare me" . He also told me not to do my daughters cookie booth this weekend because of my ANC and risk of infection. What are risks associated with platelet transfusions?
Not sure what your doctor expects as both your HGB and ANC are really good... I would be shocked if he even considers a Platelet transfusion at your levels, besides they normally only do a transfusion if one is going to have surgery as platelets don't hold up as long as a blood transfusion. I went as low as the mid 20's without to much concern from my doctor.
I agree with jules and can-do. 52,000 is not that long. As a cirrhotic I have had 57,000 platelets for years with no adverse effects. You are not anywhere near transfusion levels. Unless you are having bleeding issues currently.
Maybe he was speaking hypothetically?
Current practice usually agrees that a platelet transfusion should start about 10,000 in otherwise stable patients. If the patient is having bleeding issues then a transfusion should be started earlier.
Unless the patient is cirrhotic, and the need to continue HCV treatment is a very high priority,(this may be the last chance to cure the virus) treatment will usually be stopped somewhere around 25,000 depending on how comfortable the doctor is with managing low platelet counts and other coagulation issues.
What does my dr mean by platelet transfusions?
Infusion of donated human platelets to increase platelet count and prevent bleeding and other coagulation issues. Platelets come from donated whole blood. The platelets are usually separated at the time of donation.
Is this the same as blood transfusions?
Yes, it is one form of transfusion.
I had prolonged vaginal bleeding for pretty much all of January and now I often wake up with morning bleeding that goes away in a couple hours of getting up. I will be seeing gp on tuesday to discuss possible causes and whether I need to see the gyno. Maybe that has something to do with him telling me that. He did say for sure that if I drop below 5,000 on my platelets he will stop tx. He just tells me so little.
I am very sorry you are having bleeding issues. That sounds scary to me. Abnormal vaginal bleeding (especially heavy menstrual flow) can be caused by a low platelet count. Although I would think you would want to see your gynecologist to make sure you don't have any vaginal problems going on.
52,000 platelet count is not normally low enough to be causing bleeding.
Do you know what your PT/INR blood count number is?
The PT (prothrombin time) test measures how quickly your blood clots, which is dependent on clotting factors (proteins) that are made by the liver. The PT test is used as a marker of advanced liver disease and can indicate blood-clotting problems where it takes you longer to stop bleeding.
Usually if you a very low platelet count or other coagulation problems that cause bleeding, you will have nose bleeds that can take minutes to stop. You may notice bleeding gums when you brush your teeth. Purpura are purple, brown, and red bruises. This bruising may happen easily and often. You may not remember bumping into something. Petechiae are small red or purple dots on your skin. I have all of these symptoms from time to time but they are just part of advanced cirrhosis.
You are all so reassuring when I start to worry about all this. It just seems like my dr doesn't explain much even if I ask him to. So I often only have his word to go on, which isn't much.
Just a quick update:
My platelets went up to 57 but my ANC dropped to 722. He said to not take my shot monday, but to get bloodwork tuesday and those results will determine if I take next weeks shot or not. He also told me he didn't expect me to make it this far. He just knows some won't make it and he thought I was one who wouldn't. It's nice to know my dr has no confidence in me. Once again I've proved to myself (and others) that I can do what I have to do no matter how many times it knocks me down. Of course I still may have to quit 6 weeks early but he said that doesn't lower my chance of success much.
He thinks there was a drastic drop in ANC over the last week, and wants me to get blood work before he decides if I do the shot. I found out today my daughter is recovering from mono (tested negative last year when I had it, now positive) so maybe it's not such a bad idea. I really wish this dr would tell me more. All he said about ANC is we'll discontinue tx at 500 and platelets at 50.
I really think that you might want to consider changing your doctor. From what you are saying it seems that your doctor is not very familiar with hep c treatment
I am on week 17 now and a month ago I had platelets at 39, last week 42, this week at 46. I have a reduced interferon dose of 135, and if the values will drop Interferon will need to drop to 90 but there is no need to stop tx
I did not a value as high as 57 in many weeks of tx, but my shot has never been delayed. Drastic drops in ANC are part of tx.
You do not want to fail tx just because the doctor does not quite know what to do
I agree with the others who suggest consulting another doctor. Absent other factors some of the things your doctor suggests seem off. Especially based on the lab values you post.
I am no expert but there have been many posts on here about Promacta (rather than a platelet transfusion) ~ not that it sounds like you need either but that it was not mentioned as an option seems unusual. Ditto with Neupogen for your ANC.
These are all just examples but is is truly starting to sound as if the doctor might be unfamiliar with effectively treating potential side effects associated with HCV meds. There has to be a way to ask about these things. I would hate to see your shot at attaining SVR jeopardized by what could be miscommunication or misunderstanding. Being in this kind of limbo must be very unsettling and you deserve at least some kind of assurance your doctor is going to try and find a way for you to hang in there the next seven weeks.
btw If you had mono you are immune
The Mayo site said it rarely reoccurs.
I called and refused to hang up until I got some answers. He said because of the seizure risk and other pre-existing health problems he doesn't want me to get as low as most. Especially since we still haven't found the cause of the seizures. Neupogen also has a seizure risk. I've been undetectable since week 6 and I'm geno 2, so he says he's pretty confident I've already beat this. I Guess I've got alot of stuff to look up and figure out this weekend. I wonder how fast I could get a new dr being on medicare.
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