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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.
@badblood26 That is very low. The transfusion point for platelets is 1. You do not say if you have had a bone marrow biopsy. I hope a BMB is on your hematologist's radar. I have been fortunate with my treatment in the Eastern Colorado VA. I just reached 100 days post bone marrow transplant at Anschutz (University Hospital in Denver). My civilian hem\onc is moving to New York. I am transitioning back to my hem\onc at VA. In the nearly 3 yrs I have been treated by VA, I have not experienced frequent provider moves at either Cheyenne or Eastern Colo VAs. I wonder if the difference in experience is due to location? Doctor shortages are affecting both Civilian and VA. I deal with far more PAs and NPs at civilian medical centers than I do at VA. You and I probably served around the same time. I served active duty 82-86. When did you serve?
@janetlen no BMB yet. They are focused on the steroids and antibiotic route right now. Trying to get it to a stable level I guess. Last summer I had a major surgery that found what they thought was lung cancer to be super infection in my lung. It cost me part of the lung. High doses of PCN since. That infection may have returned, leading to immune system overactivity. Infectious disease doc in involved again too with thoracic surgeon on standby. They have to get platelets stable before doing anything they said because of severe bleed risk. Man I need a shave though! Lol
Im trying to trust the process but its hard. Maybe finding the problem causing this would help? Seems like it but im no doctor.
@badblood26 You are having a hard time. I agree finding the cause of your low platelets will help. I pray your doctors find the cause/s of your illness and bring you back to health.