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Aplastic Anemia and dealing with low Platelet counts
I was diagnosed with Aplastc Anymia about a year ago due to having a platelet count of 3(thousand). Spent December of 2022 in John’s Hopkins in Baltimore. Dr George Sotos in Rockville MD is my Oncologist/Hemotologist. He along with Dr Amy DeZern of John’s Hopkins are treating me. Was not thrilled to spen a month in John’s Hopkins, 3 days in ICU, but with both Doctors and family support, I am getting thru it. As of my appointment with Dr Sotos today, I’m not at 54.4 for platelets. Dr DeZern says that it takes upwards of 18 months to get back to a somewhat normal count of around 150 (thousand). I’ve had to get 2 bone marrow tests done which entails a doctor going into your lower back and taking a sample of my bone marrow. I was awake during both procedures and the worse part of it was that I could feel the doctor ponding and scraping in my bone to get a sample. I only had to do this twice cuz the doctor at Adventist hospital at Shady Grove (Maryland) didn’t get a good sample the first time. Not a horrible experience but not a good one either. I’m getting better. What a journey.
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Wow! Good luck.
I’m the opposite - my platelet count was 1.1 million. Essential Thrombocytosis. After a month on Hydrea it’s down to 900k.
Wish we could swap half our platelets - we’d both be in the normal range!
As long as we don’t lose our sense of humor…
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4 ReactionsI have ET and my hubby has low platelets. We both see the same Heme doc. He laughed and said, NO, you cannot swap body or any other body fluids to even out our counts! Got to keep a good sense of humor. It's one of the few things we can control!
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4 ReactionsWelcome, @gary1977. I'm tagging a few members who have anaplastic anemia like @pga62 @aeft @cardinal3 @rockitman @elenarey77 to also join this discussion.
Gary, you've been through a lot. Three days in ICU and a whole month in the hospital. As we all know, hospitals are not the most restful of places. Are you home now? What treatment is being recommended for you?
Hello Coleen, it's been a while since we corresponded about Low Platelets.
I am now 76 yrs old as of Nov 10th. I was 74 when my blood cells fell below normal.
During a routine blood test in June 2022 I found out I had Low Platelets. Shortly after finding out I had low platelets the rest of my Blood cells started to fall to below Normal.
I had two Bone Marrow Aspirations/Biopsies by two different Hospitals (sept 1st and Nov 1st, 2022). No pain during or after the biopsies. The Dr's said the Biopsies were inconclusive and did not know precisely what the cause was, they said it was between 5 possible diagnoses. I was getting Blood and Platelet transfusions weekly. My Platelets fell below 10k every 10 to 14 days, and I would go for a Platelet transfusion.
I was told to wait 6 months and get another Bone Marrow Biopsy. That would have been approximately May of 2023. By December 2022, I was in Palliative care getting transfusions almost weekly.
In January I was very weak and always tired. My family took me to Moffitt Cancer Ctr in January 2023 and they diagnosed me with Aplastic Anemia immediately by reviewing my previous Two Bone Marrow aspirations and several previous blood tests.
I entered Moffitt on January 31st and began ATGAM & CYCLOSPORIN treatments for 5 days. I was released February 6th 2023 and given a regiment of meds to be taken at home for my treatment for Aplastic Anemia.
I was told it may take 3-6 months to see any improvement in my condition.
In March (approx 6 weeks after my treatment) my blood cells began a slow improvement and my Platelets started rising fairly quickly.
As of last Monday , Nov 13th, my blood cells are back in the Normal range and my Platelets are 279K.
This is my story, there is much more to the end results thus far but in short, I have had a Spectacular TEAM of Dr's, PA's Nurses, etc at Moffitt.
Be your own advocate, if you're not getting the results, you are looking for KEEP looking. I went to 3 Hospitals and 5 Dr's to save my life.
This is my story. I have been extremely lucky so far. My Dr's began weaning me off the meds (approx 6 weeks ago) and my Blood cell levels and Platelets are still rising. Currently only taking 50% of the dosages I started with in February.
It has taken a lot of prayers from family and friends and a great deal of knowledge from my TEAM of Dr's at Moffitt Cancer Ctr.
I wish you all the very best in finding a solution to your Aplastic Anemia or any other problems you may have.
I did not mention the Hospitals I went to other than Moffitt as it is of no concern at this time. I was given several possible treatments by these Hospitals or Dr's with no results. You need the EXACT treatment in order to get results.
Good Luck and God Bless
Rocky
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2 Reactions2 week of November 2023 i was diagnosed with aplastic anemia. I had no idea what that was until my platelets count showed up at a 5000 units . Went to the treatment but about a month and wasnt easy then got sent home taking a lot of pillls but im doing better now. Just my arms and legs are really weak. Is it normal ? I wander
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2 ReactionsHello @joelpenado95. When you mentioned you went to treatment for aplastic anemia for about a month and then sent home, did that mean you were in a clinic for that month? Have you been less active than normal where your muscles could have atrophied?
Sometimes lack of exercise when we’ve been ill can play a big part in our lack of strength. Are your blood numbers returning to normal? If you are still anemic that can also leave you feeling weak. Do you also have any shortness of breath?
Good morning @joelpenado95. My mother was diagnosed with aplastic anemia as well. After the treatment in the hospital she was sent home with a lot of pills and one of those medications side effects are leg cramps. For that reason she massages her legs with a "anti cramp" lotion every night. She has learned that feeling tired and weak is one of the symptoms when her platelets are decreasing. I hope and pray for your prompt recovery....
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