good news/bad news health news :-\

Just back from the now-monthly hematologist visit. Results are mixed. :-\

Good news: Right at this very moment, based on today's lab work, I actually do not have aplastic anemia. My red counts are normal and so are my platelets.

Bad news: The aplastic anemia may have transformed itself into something called PNH, which I will list a description of at the end of this -- I can't keep straight what the initials mean.

Worse news: PNH, in about 1/3 of cases, eventually transforms itself into acute leukemia. :-(

I'm going back tomorrow to get the blood work done to find out if I have PNH. My appointment isn't till 2 pm, so I probably won't get the results till Monday. Keep the prayers coming!

My platelets this month tanked 21K from last month, which I find worrisome, but my dr. couldn't care less. As long as it's 150K or over, to him, that's in the normal range, and that's all he cares about. I, however, having spent over a month in the hospital getting platelet levels drawn every day and watching them go down by tens of thousands within hours after a transfusion, am a little freaked out.

Wish I had better news to spread.

Love to all,
Candy

Here's the scoop on PNH:
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Paroxysmal nocturnal hemoglobinuria

Paroxysmal nocturnal hemoglobinuria (PNH) occurs when abnormal blood-forming stem cells produce red blood cells with a defective protective layer. An abnormal platelet function is also detectable among patients with PNH.

History. Doctors first recognized PNH in 1866 when examining a man working with chemicals. The disease was initally called "intermittent haematinuria". In 1928, the term "paroxysmal nocturnal hemoglobinuria" was used.

Blood and bone marrow findings. Patients with PNH have low red blood cells counts due to the destruction, or hemolysis, of red blood cells in the blood stream. This destruction occurs when the blood cells lack a necessary surface molecule, GP1. They are destroyed by the complement which is the part of the immune system.

Symptoms. Red blood cell destruction often causes the urine to become dark or red in color. The patient may experience other symptoms, such as back pain, easy bruising of the skin, blood clots, abdominal discomfort, and liver failure.

Tests for diagnosis. Several tests are used to diagnosis PNH, including: Complete Blood Count, Sucrose Hemolysis Test, Ham's Test, Flow Cytometry, Urinalysis, and Serum Hemoglobin.

Course of the disease. PNH is not inherited. It often occurs as an isolated disorder. However, it also arises in an estimated 30% of aplastic anemia cases and in some patients with MDS. Additionally, PNH may evolve into acute myelogenous leukemia.

Treatment. Generally the course of treatment is conservative, depending upon the severity of the symptoms experienced by PNH patients.

Transfusions may be needed when hemoglobin decreases.
Patients who have blood clots are treated with blood thinners if platelet counts are adequate.
Stem cell transplantation is the only known therapy for a cure. Best results are achieved in younger patients with a matched sibling donor.
Low platelets and low white blood cells counts in PNH patients can be successfully treated with the same immunosuppressive therapy used in aplastic anemia.

Definitely will keep the prayers coming...I have a large "prayer jar" where I write down prayer requests. Putting this one in right now. Do you have anyone - family/friends at all who can be with you right now?

Will send PM

Aza

I've gotten a string of emails and phone calls since I put the word out -- it is very difficult to stay positive, being 1) already depressed and 2) a natural-born worrywart! -- but I am trying not to "catastrophize" (the shrinks' favorite word ;-)) until necessary.

Tomorrow all they are doing is drawing blood, no reason to have anyone there, as I doubt I will get the results till early next week -- if the news is not good, I have several friends who live nearby who I can go cry on.

Thanks for the prayers/thoughts.

Love, Candy

Ah, great to hear you do you friends close by!!

I can relate to the catastrophizing and being a worrywart...my mother just shakes her head at me and says "So, what are you going to worry about today?"

Please keep us posted, Candy.

Always close in thought...

Aza

Any news yet?

Nope, no news yet. I am going to call a bit later today and see if I can find out something. It doesn't really matter *when* I call -- the nurses never call back until just before they go home, around 5:30-6 pm.

As far as I know, I don't have to go back to the clinic, barring unforeseen test results, until I see my hematologist again in mid-April. So I called my home health care agency to ask for a nurse to come out and change my PICC line dressing. It turns out that on April 1, along with everything else that's bearing down on me by that date, that I have to find a NEW home health care agency, as they don't accept Medicare HMOs, and that is the date I have to start with one.

ARGH.

I will certainly let everyone know what I find out -- *IF* I ever find out anything!!!! Thanks for checking on me.

Candy

Oh Candy, Home Health agencies can be so frustrating. I am thinking of you. Good Luck.

Hematologist's office finally called. It only took them a week to discover this, but I do NOT have PNH, the other blood disorder they thought I might have developed.

Now if my financial stress would only resolve itself, I would be a happy girl!

Candy

Hi. Is it PNH...or NPH?

((((( Candybear )))))

Woo-hoo!

What a relief for you!

What did he say about your Aplastic Anemia?

Good news on the PNH though.

Whew. What a relief.

It's rare to see something good in here..yeahhhh...so your body is well now?? YEAHHHH

It's PNH -- I put the definition in the original post.

As of last week, all my blood counts were in normal ranges, so technically, right now I don't have aplastic anemia either. But that can certainly change......

humm..Okie!!

Too cool we shall party later candy ...we will make a party thread..later right now I gotta try to fix my...washer

WHAT GREAT NEWS, CANDY!!!