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More Platelets Please!
Well, here I go having to live in a protective bubble while my immune system enjoys its platelet buffet! I just found out my platelets have nose dived to 11. Two weeks ago, they dropped to 39 so VA put me on eltrombopag. No luck with that obviously. Ive been on PCN antibiotic for 8 months after a major lung infection and hematologist thinks that has had negative effect on platelets. So now im off PCN, off blood thinners (hx clots) and on eltrombopag, steroid Dexameth (40 pills in 4 days!) and another antibiotic (Doxycycline) with hopes of incease in platelet count (critical low). This is new for me so probably a long complicated road. Even more difficult, its the VA! I havent much faith in providers there. Getting second opinions would be tough and time consuming. No infusions yet but likely next if no improvement in a week. Odd that at 61, Ive lost part of a lung and maybe a spleen, but still have appendix and tonsils!
Best to all!
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I have what is called pancytopenia which means all of my blood counts are extremely low. I believe it was caused by agent orange exposure. I am going to a cancer for about 13 years but the counts are somewhat stable. I know if I get a cold for a few days my doctors what me on antibiotics. Luckily don’t get sick very often. I have not approached the VA for care. I am on VA disability and I am thinking of going to Mayos for a complete checkup/physical.
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1 Reaction@harleewine one of the problems I have found with VA is the turnover of providers. Its difficult trying to get treatment stability when theres always someone new to see (or a student). If I could get into Mayo, I wouldnt hesitate. Over yeats VA has caused more damage to me than they have fixed. Good luck
@badblood26 welcome to Mayo Clinic’s Connect. I’m do sorry you are dealing either low platelets. And talking to VA patients I think consistency in care is hit or miss with the VA. It’s important to have confidence in your provider so if you are worried, a second opinion can be a good idea. Sadly, it’s hit or miss with some other healthcare professionals. It’s important to have confidence in your provider so if you are worried, a second opinion can be a good idea.
https://www.mayoclinic.org/appointments
I am not a Mayo patient but if my blood disorder progressed, I would definitely attempt to get an appointment. They took great care of my husband 25 years ago. They felt that he was getting good care in our community healthcare system, but they did their own testing and looked at his treatment plan very carefully. It gave us confidence that he was getting the best care possible.
I just popped into this discussion to say that and I wish you the best of luck. Will let us know how you are?
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1 ReactionI have been lucky at the VA that I have had my primary care doctor for 3-4 years. Next appointment is in April and I will see what he sees as a treatment plan. I am on Medicare and have a supplemental policy along with the VA. There are tests that can be done at the VA or other places- I think it is a MGU that involves a bone marrow test for issues caused by agent orange. I would have to think long and hard about the VA doing the procedure.
@harleywine You have a good attitude and I salute you. I have low platelets also and we're trying to figure it out There may be bone marrow biopsy in my future again Not really on anything at the moment. More of a watch and see. I have an oncologist because I have breast cancer among other things And he is scratching his head.
Dont wait till platelets get too low. It doesnt take long if theres an immune system attack on them. Sometimes its happening in the spleen. Routine bloodwork is easy to check. Steroids are an obvious treatment when too low. Or eltrombopag. Too low and you risk serious bleeding internal or even just a cut somewhere or a fall. Stay on them to check your blood and good luck! Platelet drop seems like a simple issue but its complex once too low.