TOPIC:

That is interesting Cindy I think your guess is right you are indeed lucky.
I performed an online search and found a multitude of medical papers regarding post splenectomy infections.

One paper published 5 years before your splenectomy (accessed at www.ncbi.nlm.nih.gov/pmc/articles/PMC1731383/) is entitled Overwhelming infection in asplenic patients: current best practice preventive measures are not being followed.

An interesting read as are Overwhelming post splenectomy infection syndrome in adults - A clinically preventable disease at www.ncbi.nlm.nih.gov/pmc/articles/PMC2675110/ and Recommended vaccinations for asplenic and hyposplenic adult patients at www.ncbi.nlm.nih.gov/pmc/articles/PMC5328222/#cit0070.

Sepsis is so much more prevalent these days, no doubt due to years of uneccessary over prescribing of antibiotics.

I"m either lucky or an odd ball.

I'm pretty sure we are all oddballs!

Hello:
May ask your age around the time of your splenectomy?
Sincerely.

lovinghusband, if you're asking me, I was 47 when I had my splenectomy. Diagnosed at 45. I'm 61 now.

Hello - big surprise! Last we we were informed by a recognized institution that her bone marrow results did not reveal ITP: ITP was ruled out! Instead we have a visit with a new hematologist to explain the discovery of MDS. Spouse had chosen NOT to have her spleen removed although three surgeons were more than happy to extract. It's a new fork in the road. Who can be trusted, I wonder? As a sidebar, platelets have stabilized to about 16 for last few weeks and not requiring tranfusion.

Since it appears the problem is something other than ITP, I'm glad your wife dodged an unnecessary splenectomy. MDS could certainly explain the myriad of pains she suffers. I hope she'll be able to obtain the best, most effective treatment available.

As for who to trust, I echo the sentiments of the others here who would have no confidence in that original treating hematologist. She apparently missed the biopsy abnormalities and plowed ahead with the most aggressive ITP treatments that were unwarranted.

Oh, and for what it's worth, I venture to say that most hematologists treat proportionately more cancer patients than blood disorder patients. ITP patients specifically might be the smallest minority of all. I live in a large metro area with two university teaching hospitals. Among all the hematologists I researched, only one specializes solely in ITP and TTP. I consulted him about 7 years ago, looking for some cutting-edge options. He urged splenectomy as my "cure", which is known to be outdated advice. I expected more from a so-called expert, so he and I were done that day.

I would be thinking very seriously about reporting the original haematologist to the medical board that covers your area. Obviously needs to improve knowledge and practice. So pleased to hear your wife did not part with her spleen as a result of a misdiagnosis. Makes me wonder how many other patients have been misdiagnosed.

Hello: I concur, just due to rarity of ITP most of the medical dollars and research is going to cancer. Follow the money? IMHO one needs to find an aggressive specialist who stays on top of their specialty. Perception is that what they learned twenty to thirty years ago when they left school still forms the basis of their knowledge.

Hello: can one fault a doctor for acting on inferior results from a pathologist? One assumes each specialist in the supply chain will perform their job. Yes, I'm disparaged from this entire process but have learned much. Trust but verify. And verify with multiple specialists and personal research. I'm curious to speak to the local pathologist to understand the process and analysis they performed on the bone marrow. Spouse has a new hematologist and he appears to be better educated and open to discussing treatment options.
Sincerely.

Im a bit confused. I dont believe that there is any medical test that can or will confirm ITP. Certainly not a Bone Marrow analysis. That procedure can rule out some of the potential mores serious conditions that might be the primary cause of ITP. Am I mistaken?

Hello : Per multiple specialists, I'm told it's a diagnosis of or by exclusion. There is no litmus test. In spouse's case, a recent second opinion by a pathologist, employing some sort of genetics-based analysis, identified a genetic abnormality within the marrow sample. Spouse has been referred to a new hematologist with specialty in this area of genetics.
Sincerely.

Hello: splenectomy scheduled next month as ongoing rescue therapy is unbearable. mds 5qd also underlying. Deeply concerned, exhausted (but at peace) with the state of medicine. Certain gods of medicine are above reproach, will not answer questions that threaten their deity apparently. Canceled by another specialist due to concern of "liability." I had thought the diagnosis was ITP, not leprosy. Fortunately, there are some human medical providers that stand tall, brave and are honest and transparent.

Hello all :
Just an update. Splenectomy was performed after several consultations. Platelet count is just under 200,000 which is encouraging. Very big relief from anxiety of bi-weekly infusions, although only time will tell if counts hold.
Sincerely.

Thank you for the update - it's good to hear your wife came through surgery and her count is up. Hoping they stay up!
Please come back and keep us posted! My best to you both!!