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  #1  
Old Fri Sep 18, 2020, 05:36 PM
David M David M is offline
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Moderate AA and COVID-19

Hello Everyone,

I recently had the misfortune of getting COVID-19. I'll briefly describe my symptoms, and then ask a question or two...

At first, I noticed a sort of hacking, non-productive cough. This cough went on for a few days. I was tested, and got a positive result on September 1.

Other than the cough, my symptoms were minimal, and I felt fine at first. In fact, for the first few days, I continued to do a daily workout program I had been doing before I got sick -- for the first few days I felt fine after the workout. However, as the week went on, I felt progressively worse after the workouts were done -- by the end of the week I had stopped working out completely.

Near the end of the week, I thought I felt good enough to do some yard-work... this was a mistake. After a couple of sessions of yardwork, I felt terrible -- like I had no energy at all -- and I knew I was sick!

For the next week, I was very sick -- pretty much confined to my recliner, coughing my head off, fever at times at around 100F (at times slightly higher), no energy, achy, and just generally feeling terrible. If I walked across the house, I would feel out of breath and have to rest. After about a week of this, I got to the point I did not think I was improving at all, so I went to the Emergency Room in a nearby city to get checked out.

The ER doctor found that my O2 saturation level was near 100 (good), and my lungs had the expected level of COVID pneumonia -- I suppose I was recovering as expected from the COVID... but after doing a CBC, he found my blood counts (which were already low due to MAA) were now even lower. My HGB was 7.2, and my platelets were 26. After consulting with my local hematologist, they decided to give me a unit of platelets and a unit of regular blood. Also he gave me 4 days of Levaquin antibiotic in case any bacterial infection was starting up.

It has now been about a week since the transfusion. I am feeling much better (still coughing quite a bit), but with more energy. However, I don't feel like I have a "normal" level of energy & stamina yet. I am supposed to meet with my hematologist next week for re-test and further evaluation. The COVID-19 seems to be improving, although I just tested positive again yesterday!

Questions:
(1) Is it to be expected that COVID-19 will drive your blood counts lower? Is this true for anyone, or just for people with AA?
(2) What is the likelihood that the blood transfusion will be a one-time thing for me and not something we need to repeat regularly from now on?
(3) My O2 saturation level was near 100% at the ER, however, my HGB 7.2. I do not understand the relationship between these two readings -- how could both be true?

If you have any other thoughts on COVID-19 and its affects on those with AA, I'd love to hear them!

Thanks,
David M
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David M, reds/whites/plats slowly declining since 2000; hypo-cellular bone marrow; diagnosed Mild AA; low counts, but stable since 2009; watch and wait -- no treatments required to this point.
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  #2  
Old Sat Sep 19, 2020, 10:52 AM
Marlene Marlene is offline
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Hi David,

Sorry you caught COVID but glad that you are recovering. Must have have been pretty unsettling.

Based on our experience, any infection can effect blood counts. Fevers will chew through red cells and platelet so it's not uncommon for counts to drop. It's going to be more noticeable in those with blood disorders whose counts are already low. Losing 20 -30K platelets in a person with normal platelet value of 230K would not be noticed. However, dropping from 50K to 20K will. Most will rebound but it will take time. First you have to get over the virus. Rebuilding your blood could take longer because of the stress from the virus on the bone marrow. My personal feeling is that the bone marrow is working extra hard producing white cells to fight the infection and there is only so much it can do. As is typical of this disease, watch and wait. In the meantime, you may need one or more red cell transfusions until your bone marrow can get back on track. If your platelets are holding at 26K, you should not need a platelet transfusion unless you have bleeding.

When you see your doctor, ask if checking your ARETIC and Reticulocyte Percentage would shed any light on how well your red cells are recovering. It may be too soon yet.

Also, antibiotics can effect the bone marrow so that may slow things down.


There are so many unknowns with this virus so stay on top of it. I hope it resolves soon and you get back on track.

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 Sun Sep 20, 2020, 08:02 AM
MelbourneAA MelbourneAA is offline
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Saturation

Hi David,
Haemoglobin level is the concentration of red cells in the blood.
Saturation is the amount from 0-100% of the circulating Hb that holds oxygen.
A normal level is 97-100%.
You can be anaemic with normal oxygen saturation. In fact this would be usual, otherwise you would be really short of breath.
I hope this helps. I hope you get back to normal. I also have NSAA.
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  #4  
Old Sun Sep 20, 2020, 02:56 PM
Hopeful Hopeful is offline
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Hi David,

I am sorry to read that you are dealing with COVID but am grateful that you are sharing your experience on this forum. It feels like it the elephant in the room.

Hopefully, your next blood draw will show that your counts are improving. It may take awhile for your marrow to fully fight the virus off. I would caution you against returning to your normal workout routines until you are completely recovered from this virus, as you don't want to put unnecessary additional stresses on your immune system just to test things out. I only say this because I think that pushing through a virus was the cause of my AA. Just take it easy and slow.

Wishing you a strong recovery!
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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
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  #5  
Old Mon Sep 21, 2020, 06:47 PM
David M David M is offline
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Thanks!

All,

Thanks for the great advice re: dealing with COVID-19 recovery, etc.

I definitely will not continue my exercise routine anytime soon. I'm trying to listen to my body, and my body is saying, "No way!" Although I am feeling some better, I can tell I have not fully returned to where I need to be.

I am supposed to go to my local hematologist on Friday, and I don't doubt that I will be given another unit of blood. After an initial burst of energy after the first transfusion, I am feeling kind of droopy overall once again. Or maybe I just need more time to build up once again.

Anyway, thanks again for your thoughts...

David M
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David M, reds/whites/plats slowly declining since 2000; hypo-cellular bone marrow; diagnosed Mild AA; low counts, but stable since 2009; watch and wait -- no treatments required to this point.
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  #6  
Old Sat Oct 3, 2020, 02:51 PM
Marlene Marlene is offline
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Just checking in to how you are doing. Hope you are feeling better and your counts are recovering too.
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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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  #7  
Old Sun Oct 4, 2020, 05:04 PM
David M David M is offline
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Thanks for Asking!

Thanks for asking... I am doing much better. Still got the "post-covid cough."

However, since the transfusion, I have not been able to go back in to get a CBC. I was to the point I was obviously no longer contagious with Covid-19, but each week I would get re-tested and would continue to test "positive." My hematologist would not allow me to come into their facility for a visit being "positive" for Covid-19, since they had some people there being treated who had very low immune systems.

So, I still haven't been checked post-transfusion (not too happy about that). I feel pretty good, but I don't have much stamina. I'm guessing my HGB is still in the "8" range... but who knows. I finally got a "negative" test result two days ago (on a Friday), so maybe I can see my doctor this week some time.
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David M, reds/whites/plats slowly declining since 2000; hypo-cellular bone marrow; diagnosed Mild AA; low counts, but stable since 2009; watch and wait -- no treatments required to this point.
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  #8  
Old Mon Oct 5, 2020, 02:32 PM
Marlene Marlene is offline
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Glad you are feeling better and are finally testing negative. It's very concerning that your local hematologist did not offer another option to getting your blood tested. I know they are concerned about infecting their immune compromised patients, but at this point, they've had enough time to figure out how handle their COVID positive patients too.

Hope you keep on improving and your counts come back.

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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  #9  
Old Tue Oct 20, 2020, 10:25 PM
David M David M is offline
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Update

All,

Just a quick update... I finally got to go back and have a follow-up visit with my hematologist. My platelets had returned to 52; neutrophils better than usual at 1.67; HGB is up to 9.0 (which is the low end of "normal" for me).

It has been long enough since the transfusion that the doctor says this is my own blood now. Apparently it will take some more time before my HGB fully bounces back to a better level... but like I said, sometimes it has been 9.0 anyway.

I have a lingering cough, and my energy level is still not back where I want it. Doctor said it may be another month or so before the cough goes away and the energy fully returns.

My B12 was on the low end of normal, so I am going to get either injections of B12 every 2 weeks for a while, or I have asked if there are any pills I can take instead... waiting to hear back from them.

That's all for now!
David M
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David M, reds/whites/plats slowly declining since 2000; hypo-cellular bone marrow; diagnosed Mild AA; low counts, but stable since 2009; watch and wait -- no treatments required to this point.
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  #10  
Old Tue Oct 27, 2020, 11:32 AM
Marlene Marlene is offline
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Good to hear. I would suspect correcting your B12 can help with your HGB and fatigue. Oral supplementation is effective. Do you know why your b12 is low?
Once it's restored, you will probably need to continue to supplement it unless you can remove the cause. Aging plays a role.

Restoring B12 can very easy and is for most. But it can get complicated depending on the person. So if you are one of the easy ones, Jarrow makes a good sublingual methyl form of b12 in the 1000mcg and 5000mcg dosages that are effective. They also have a sublingual formula with methyl-folate added to the B12. Both forms are bio-available meaning they do not need to converted by the body in order for them to be utilized.
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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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  #11  
Old Tue Nov 24, 2020, 12:32 PM
Hopeful Hopeful is offline
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Great news, David!
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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
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