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  #1  
Old Fri Jan 3, 2020, 01:50 PM
Jane4224 Jane4224 is offline
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Aplastic Anemia post pregnancy delivery

Hello everyone- Has anyone acquired aplastic anemia during pregnancy? Some background on me; I used IVF to conceive my baby. I was diagnosed with aplastic anemia during the second trimester of my pregnancy. Not sure what the trigger for this is because:

- Every year my during my annual physicals, my main line cell counts were all normal.
- No one in my family has had this condition.
- I have never had cancer or been treated for cancer.
- I was never exposed to toxic chemicals like pesticides or benzene.
- I have never taken any drugs like chloramphenicol or drugs for rheumatoid arthritis.
- I have never had these serious viruses: Dengue fever, Hepatitis, Epstein-Barr, Cytomegalovirus, Parvovirus B19 and HIV.
- Itís not Myelodysplastic Syndrome or ITP, (hematologist tested for this).

I was told early on that it should resolve after I delivered. I ended up developing pre-eclampsia and had to deliver my baby early via C-section at 35 weeks. Unfortunately, itís been a month and a half and it has not resolved. Has anyone experienced this before? If anyone has, how long did it take your body to heal for it to disappear? Did you take anything to help raise your platelet and red blood cell count levels? Iíve been taking papaya leaf extract for the last two weeks with no positive results so far. (This is what Iím taking):

https://www.amazon.com/Papaya-Leaf-L...s%2C219&sr=1-5

Iím depressed and losing hope because my hematologist keeps pushing for a bone marrow transplant but I feel that itís an extreme option. Could aplastic anemia acquired through pregnancy be triggered by out of balance hormones?? Has anyone had any luck with Promacta?
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  #2  
Old Fri Jan 3, 2020, 03:25 PM
Marlene Marlene is offline
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So sorry that you are having to deal with this. I have no experience regarding SAA and pregnancy, only SAA with my husband. Like you, my husband was a picture of health and 9 months prior to getting diagnosed, he had physical which he passed with flying colors.

The one thing most can agree on is to have a doctor who is experienced with treating Aplastic Anemia. It's such a rare disease. If you haven't already, it would be worth exploring a consult with the NIH, Dr. Young. Or Dr. Brodsky at Johns Hopkins. Both have a lot of experience with treating SAA.

In the meantime, if you haven't done so already, rule out the easy stuff:

Rule out nutritional issues. Some of the basic things to check are vitamins D, B12, folate, copper, iron and zinc levels. These are the key nutrients involved in blood production. MMA and homocysteine levels will further help in assessing B12. B12 should be over 400. A low normal would be suspect. Pregnancy can place a burden on your nutritional status.

Hormones can play a role. So having your estrogen, progesterone, testosterone and thyroid could be helpful to identify issues that need correction.

Also, gastric issues, like being positive for h.pylori bacteria which causes ulcers can also impact bone marrow. It's easily tested. If you've never been treated for then I think it's just a blood test. Otherwise, I think they test your breath.

Finally, keep track of all your labs. Get copies of the results. Keep a spreadsheet of your CBC to watch for trends. Don't rely on a single CBC. Counts fluctuate so a one time CBC can be misleading. What are your counts now? Are all three line effected?

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Fri Jan 3, 2020, 05:40 PM
sstewart09 sstewart09 is offline
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How were you diagnosed? Did you have a bone marrow biopsy during your pregnancy? If so, what was your cellularity? Having 2 kids myself, itís a slow process getting back to ďnormalĒ post pregnancy, and 1-2 months is still very early. Iíd definitely get a second opinion if you arenít feeling comfortable with what your hematologist is suggesting.
My husband has just turned 30 when he was diagnosed with VSAA and was in great health. I completely understand how you are feeling and hope you get answers soon!
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Samantha, wife of Joe age 34; diagnosed vsaa 2012; MUD BMT February 2013
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  #4  
Old Sun Jan 5, 2020, 01:01 AM
Hopeful Hopeful is offline
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Hi Jane,

I am sorry that you are having to deal with this on top of the exhaustion of being a new mom!

Pregnancy is considered one of the triggers of aplastic anemia.The experts at NIH will discourage former aplastic anemia patients from getting pregnant because of this risk.

Sometimes the aplastic anemia will resolve on its own. A C-section was probably another big stress on your immune system, however, that may factor into your recovery. If your counts continue to trend down, and a BMB indicates severe aplastic anemia or you become transfusion dependent, then swift and decisive treatment is needed: either IST or a transplant. Those are the choices. Homeopathic measures will not cure immune-mediated aplastic anemia if that is what you have, it is worsening, and if it is not due to nutritional deficiencies.

Like Marlene, I'd strongly recommend getting a second opinion from an expert in aplastic anemia ASAP. If you don't want to travel, there are probably some great aplastic anemia specialists in the Seattle area, and if you decide to go the transplant route, Fred Hutch is one of the best. You need to take immediate action in seeking out that opinion! The experts will fit you in their schedules, as they know how critical it is to start treatment soon after diagnosis.

It is good that you are in great health otherwise. I know you are tired, even more so with a little one and being anemic, but shift your focus from what caused the aplastic anemia to how best to treat it and when that treatment should start. Once you are confident in your diagnosis and have a game plan in place, you will feel a greater sense of control(?) should you need to act on that plan.

I hope I am not scaring you. I am just trying to light a fire, like my hematologist did for me. Wishing you the best!
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53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent

Last edited by Hopeful : Sun Jan 5, 2020 at 01:38 PM.
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  #5  
Old Mon Jan 6, 2020, 10:18 PM
Jane4224 Jane4224 is offline
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Hi Everyone

Hi Everyone,

I finally got a chance to answer messages, the baby has been pretty fussy lately. Pretty sleep deprived right now.

@ Marlene: Iím going to see my Naturopath this week; Iíll ask her to order some tests to check the nutrient levels. I never knew that about the h.pylori bacteria; Iíll ask her to test on that too. Thanks for the doctor recommendations. I live in the Seattle area (currently being seen at Seattle Cancer Care Alliance) but Iíll contact them to see if theyíve run across any patients with a history like mine. Current cell counts are:

Hemoglobin- 8.6
Neutrophils- 0.76
Hematocrit- 26%
RBC- 2.7
WBC- 2.46
Platelet- 13

The weird thing is that out of all of the areas, my white blood cells and the neutrophils slowly keep trending up. Not sure if this is a good sign or if Iím reading too much into it.

@ Samantha: Yes, I was diagnosed with a bone marrow biopsy while I was pregnant. I think my cellular itís was 5%. Iíd have to look back at my paperwork but I remember I was diagnosed with a ďmoderateĒ case of AA according to the doctorís chart. I thought it was pretty early too after the delivery for another intense treatment/procedure. One question you made me think of was, how long does it take a womanís body to return back to normal after pregnancy and breastfeeding?

@Hopeful: That does sound possible, about the C-section affecting recovery time. I am very concerned about getting treatment; Iíll definitely seek out a second opinion. Maybe someone more knowledgeable will have a better plan course of action for me to take.

Thanks for the feedback everyone!
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  #6  
Old Tue Jan 7, 2020, 03:06 PM
Marlene Marlene is offline
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Hi Jane,

A couple things to keep in mind:
1 - Upward trends are good. For John, and many, recovery is first seen in the white count followed by red cells then platelets. But everyones' recovery will follow their own path. The body decides how and when and what to do first. And even on upward trends, dips do occur. John's recovery was painfully slow. Even those who get AGT may not see a response for six months. You have three things to recover from...pregancy, c-section and AA.

2 - Red cells: An indicator of new red cell being made is the ARETIC # and retic% adjusted for the anemia. Once we started seeing an increase in the ARETIC #, it took months to start seeing it show up in his HGB.

3 - B12 and Iron, at a minimum, should have already been checked when you were first having symptoms. But if you were on B12 when they checked, the serum levels were most likely falsely elevated. Nutrients need to held at least 4 or 5 days prior to testing.

4 - Ask your Natruropath if there is a urine test to check nutritional status. If not, then make sure what she chooses doesn't require a lot of blood. Spectracell does micronutrient testing but it uses blood serum. They pull out the white cells to assess things. Blood is precious and you're holding at an OK level right now and I would hate to see that stressed at this point. There are things she can assess without checking your blood. John did an Organic Acids test which uncovered some nutrient deficiencies but this was long after treatment and he had already been doing a lot of things to heal.

5 - Like Hopeful said, Fred Hutchinson Cancer center might be worth exploring for a second opinion.

6 - Sleep is so critical to healing. Is there any way for you get some help so you can get some sleep?
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Wed Jan 15, 2020, 01:34 AM
Jane4224 Jane4224 is offline
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@Marlene: Hi Marlene- Thatís really encouraging to hear about your husbandís experience (and others) with the upward trends in their white then red blood cells. I never knew about that! That does give me hope and I havenít had that in awhile, thank you.

Iíve heard of the reticulocyte count but what is ARETIC? My naturopath is looking into my prior tests to check on minerals and nutritional status. I remember having a lot of tests early on, not sure if this was done or not. Iíll ask her about the Spectracell if nothing turns up. I found an AA specialist with Fred Hutchinson for a second opinion, currently getting an appointment scheduled. Ah, sleep, Iím definitely not getting enough. My mother has been in town helping out and I should take advantage of that. I feel like I have so much to do; Iím just used to being busy and itís hard for me to stop and take a break. It sounds silly but I might just need to schedule nap time in for myself so I can get some rest.
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  #8  
Old Wed Jan 15, 2020, 04:28 PM
Marlene Marlene is offline
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The ARETIC is the absolute reticulocyte count. It's the actual number of immature red cells. Retic% is the percentage of new red blood cells. Red cells have a 120 day life span, platelets about 10 days and white cells depend on the type of white cell. Some as short as one day to months. I tried to find John's Retic numbers when we started to see an improvement in red cells but couldn't find it.

Here's a link that will explain reitc better than I can.

https://www.sciencedirect.com/topics...culocyte-count
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.

Last edited by Marlene : Wed Jan 15, 2020 at 04:53 PM.
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