Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me

TOPIC:

Feedback requested after Several Failures 1 year 1 week ago #70259

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1899
  • Karma: 7
  • Thank you received: 546
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.
The following user(s) said Thank You: CindyL

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 1 year 1 week ago #70274

  • CindyL
  • Offline
  • Posts: 1410
  • Karma: 1
  • Thank you received: 184
I"m either lucky or an odd ball. :lol: :lol:

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 1 year 1 week ago #70276

  • bikerdude
  • Offline
  • Posts: 15
  • Thank you received: 2
I'm pretty sure we are all oddballs!

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 1 year 6 days ago #70284

  • lovinghusband
  • Offline
  • Posts: 34
  • Thank you received: 0
Hello:
May ask your age around the time of your splenectomy?
Sincerely.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 1 year 5 days ago #70288

  • CindyL
  • Offline
  • Posts: 1410
  • Karma: 1
  • Thank you received: 184
lovinghusband, if you're asking me, I was 47 when I had my splenectomy. Diagnosed at 45. I'm 61 now.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 10 months 3 weeks ago #70443

  • lovinghusband
  • Offline
  • Posts: 34
  • Thank you received: 0
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.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 10 months 3 weeks ago #70445

  • midwest6708
  • Offline
  • ~ Janet ~ Diagnosed Sept. 08
  • Posts: 375
  • Karma: 2
  • Thank you received: 82
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.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 10 months 3 weeks ago #70448

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1899
  • Karma: 7
  • Thank you received: 546
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.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 10 months 3 weeks ago #70451

  • lovinghusband
  • Offline
  • Posts: 34
  • Thank you received: 0
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.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 10 months 3 weeks ago #70452

  • lovinghusband
  • Offline
  • Posts: 34
  • Thank you received: 0
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.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 10 months 3 weeks ago #70456

  • gozorakgogo
  • Offline
  • Posts: 129
  • Thank you received: 17
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?

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 10 months 3 weeks ago #70461

  • lovinghusband
  • Offline
  • Posts: 34
  • Thank you received: 0
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.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 9 months 2 weeks ago #70679

  • lovinghusband
  • Offline
  • Posts: 34
  • Thank you received: 0
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.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 7 months 3 weeks ago #71019

  • lovinghusband
  • Offline
  • Posts: 34
  • Thank you received: 0
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.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 7 months 3 weeks ago #71028

  • MelA
  • Away
  • Posts: 887
  • Karma: 2
  • Thank you received: 286
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!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 7 months 2 weeks ago #71093

  • lovinghusband
  • Offline
  • Posts: 34
  • Thank you received: 0
Hello all:
Seriously, without the great information from everyone here I'm unsure how we would have coped! Such awesome data, collaboration and compassion. As much as I've learned, and continue to learn, there's a recent bit of information I discovered. Different hematologists, even in the same city/area, prescribe different treatment methods in the same hospital system! Case in point was IVIG transfusions. One doctor recommended 1X every time below 30,000. Yet another recommended 2X (consecutive days) below 10,000 only. Our experience was that latter was superior and resulted in up to 4 weeks between IVIG transfusions. Here's a big kicker: just in the past 2 weeks while googling on the internet we came across a health care company that offered private infusion rooms (full desk, TV, bathroom) at 1/3 the cost of the hospital. Wife was continually anxious about the hospital transfusions which were administered in a large room with many people. Since she suffered with other symptoms like diarrhea, asthmatic cough, etc, it was both embarrassing and traumatic having to suffer the stares of patients thinking she had covid. Of course the hospital didn't offer to educate us in either private health infusions or even (as I found out) in-home infusions. Why do so when the hospital pockets the extra dollars! Two days back-to-back are about $12k.
I learned a good lesson: Always ask your provider, "What are my options?"
Sincerely and blessings to all.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 4 days ago #71613

  • lovinghusband
  • Offline
  • Posts: 34
  • Thank you received: 0
Hello, just an update after the splenectomy that was performed in mid-March, just over 3 months ago. Yesterday's platelet level was 242,000, the highest that has been ever measured. Last month was 141,000 and previous month 188,000. Pfizer covid vaccination was completely unremarkable for her. One open issue is finding a new spinal anesthesiologist for epidurals to address chronic disc degeneration in cervical and lumbar. Doctor had dropped her due to platelet fluctuation and refused to ever see her again despite her latest counts being higher. Unsure if can say this is some discrimination against ITP patients; however, doctors can choose whom to treat. Nevertheless, we are blessed and thankful for today.

Please Log in or Create an account to join the conversation.

Charity NavigatorGuideStar Seal NORD Member Badge 2021THSNA logo