Breathing difficulties | Experts second opinion

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Breathing difficulties | Experts second opinion
« on: November 07, 2015, 09:37:21 AM »
Hey all,

I need your help understanding a new condition a friend of mine is facing.

What happened:
She felt tiredness and minor breathing difficulties for 2 days (Wednesday-Thursday),
her breathing difficulties got worse so we decided to go the hospital.

They ran a CT check, and immediately decided to hospitalize her
because the CT showed a strange liquid and no one knows what it is,
the physicians are working on getting a sample and analyze it.
Now she is breathing with machines help under physician supervision.

More data:
- the Neutrophils levels are very high (around 2,000). looks like her body is fighting something.
- the HB levels are ok.
- She had 2 or 3 blood transfusion within 2 weeks - she planned to travel for 10 days and had to compensate or something.

Do you have any idea for what could it be?
and what data could help you understand this condition?

Thank you.



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Offline Andy Battaglia

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Re: Breathing difficulties | Experts second opinion
« Reply #1 on: November 07, 2015, 06:47:12 PM »
If the patient has lived with a low Hb level, <9 for a long time, this may be caused by extramedullary hematopoiesis (EMH), which is the body responding to low Hb levels by producing masses of red blood cells outside the bone marrow, usually in the thoracic cavity. When the mass is next to or inside the lungs, it can affect the ability of the lungs to fully expand, causing an asthma like condition. This can result in fluid around the lungs and a high white cell count. If the doctors have not found an answer, EMH should be investigated. The best treatment is maintaining a higher Hb  level. The doctor from Los Angeles Children's Hospital, one of the best thal centers on earth, told me that they maintain an Hb of above 11 when this problem occurs. Only by raising the Hb will these masses stop growing and shrink.
Andy

All we are saying is give thals a chance.

Re: Breathing difficulties | Experts second opinion
« Reply #2 on: November 07, 2015, 10:10:17 PM »
Hey Andy,

I appreciate your reply mate, your insights are very helpful.
we already contacted the physician to request investigating EMH asap.

I would love if you give your opinion on what our physicians are thinking,
they are investigating these possibilities while we discuss it here:

The things they suspect:

1. PCP (pneumocystis carinii pneumonia)
2. Viral or Bacterial infection
3. Internal bleeding (or lung bleeding)

Important notes:
- I attached the scans of her lung in this reply.
- h1n1 is investigated and been revoked - its not the cause.
- She has a port inside her chest (this is how she takes her blood transfusions).
- Right now, she is taking antibiotic treatment using  Vancomycin / Meropenem / Resprim
- She is receiving steroids - up to 38.5

Question I have:
- What options do we have to maintain HB levels above 11, blood transfusions mainly?


Your efforts are very appreciated here.
« Last Edit: November 07, 2015, 10:17:52 PM by ahmaddiab »

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Offline Andy Battaglia

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Re: Breathing difficulties | Experts second opinion
« Reply #3 on: November 07, 2015, 11:55:58 PM »
I think if blood tests and biopsy show nothing conclusive, that she should be tested for EMH, because it has an ability to grow anywhere, even at the cellular level within other cells. It may turn out that it is not related to thal, but they have to keep looking for an answer.
Andy

All we are saying is give thals a chance.

Re: Breathing difficulties | Experts second opinion
« Reply #4 on: November 09, 2015, 10:02:45 AM »
Physicians got a negative feedback on PCP or viruses - which is good.
However, they don't think EMH is likely and their explanation is:
because her lungs healing relatively fast, they believe the antibiotics are helping whatever her body is fighting.

When you say investigate EMH, what should they actually do?
what's important that she's recovering, however, the reason of why it happened still unknown.

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Offline Andy Battaglia

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Re: Breathing difficulties | Experts second opinion
« Reply #5 on: November 09, 2015, 10:23:25 PM »
If her lungs are healing, then it most likely has been an infection. If she does not improve, then further investigation is needed, but right now it should be wait and see. If needed, EMH can be detected by various scans, ultrasound, CT or MRI.

I have attached an x-ray image of EMH in the lungs. It is very similar to the x-rays you posted. You can see why I would suspect EMH, but fluid from other sources can produce a similar image, as well.
Andy

All we are saying is give thals a chance.

 

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