Keeping Faith

[LoveRapheal1]

I was diagnosed with severe aplastic anemia on the date of September 11, 2012. The doctor does not know what caused this condition. I had bruises all over my body and a small cut on my finger that would not stop bleeding. I was admitted to the hospital with a platelet count of 2. I had to resign from work because I was receiving several transfusions of blood and platelets. I also received an ATG treatment at NYU. I arrived home October 5, 2012. A hematologist at Sloan Kettering Center has arranged to find a 10/10 unrelated donor for me for a bone marrow transplant if this treatment does not work, because my siblings are not matching donors. Not to mention I am spending as much time as possible in this hotel room so I am not around any germs. I lost my home from Sandy and the hotel and Fema have given me the blessings of a clean room to live in. My primary hematologist told me to wait six months before receiving a transplant. I have agreed to do so. I have been on a roller coaster ride with my platelets rising and falling and they have been relatively low. I visited a hematologist at Methodist and he told me my platelets were 7 and that I should not transfuse. He referred me back to NYU since his specialty was not Aplastic Anemia but his council did help a bit. My period began right after I left his office and it was extremely heavy. I admitted myself into the ER. I fell to a 5 and this made me nervous so they gave me two packages of blood and one package of platelets. A few weeks later I visited my primary doctor and he tested me. He said my platelets fell from a 10 to a 7 and that my red and white blood cells fell but not enough to need a transfusion. He told me that I should not get platelets unless I fell to a 4. I read online about your organs getting damaged and increased risk of graft host rejection after receiving too much blood but I also began to feel nervous about internal bleeding. I decided to listen to both doctor's advice (as you can see I have received many opinions) and my platelets rose over night from a 7 to 14. This was Friday, but I received my period Sunday and I am very nervous. I decided not to check my CBC's yet. I am going to try to see if my counts will stabilize or increase after my period. During the meantime I have done much research about this disease and the proper foods to eat. I heard some woman speak of birth control and doctors did give me this at a hospital in Staten Island. My primary doctor said he did not want me on a hormone because it could give me hot flashes and menopause. I asked another doctor in Brooklyn if it was safe to take birth control and he said no because it could give me a blood clot and blood clots can kill you. I am just praying as much as I can for faith to get better and reading inspiring stories about a member who has counts that have risen in 9 months is very inspiring. I have read stories online of survivors. This helps because there is much traumatic information for new comers and I prefer to keep the faith and hope in God's unconditional love and pray for healing.

[ssdavi71416]

SAA stinks. My platelets started increasing at about 4.5 months. The change from 7 to 14 is a reasonable sign. My platelets increased only 1-2 units for several months. It was October by the time my platelets were above 20 and I was able to go off the Aminocaproic acid. My platelets are now at 133. Just remember it is a marathon. You can probably find many post on this forum where people have not responded for a long time. Good luck and God bless.

[Heather8773]

I am sorry you have been going through all this. It can be a scary ride. But it can also be full of hope. Everyone here is amazing, Knowledgeble and supportive
You said you are starting to see a rise in your plateletts. What about your other counts? From my understanding it may take 6 months to a year for counts to continue to climb after ATG.(I'm still looking into this though as my husband is most likely about to start ATG). Maybe someone can correct me if I'm wrong.
Anyway if your counts are starting to go up that's great! I think you said your about 4 months in?
We have been advised not to get platelets unless there are signs of bleeding or counts so low it's necessary. The reasons we were given included, they only last about 7 days and the more often you have plateletts infused the shorter time they help and your body develops antibodies against them faster. Point being get them only if you need them. With that said if you need them get them!
My advise, listen to your body. Look for signs of counts going down. Keep your Dr informed of any changes.
Keep praying courage, boldness, clarity, and peace.
Hope that helped

[LoveRapheal1]

Thank you for your feedback. It sounds as though it took about 9 months for your counts to increase. Someone else had her counts increase in the same amount of time. That is interesting to know because the doctors usually give ATG a 6 month interval, but I am hearing of success stories that have occurred at later time periods. Thanks for your feedback

[LoveRapheal1]

Yes and the doctor's told me the same, only because it has been 4 months since transfusions. I also heard that too many transfusions can lead to organ damage and graft host rejection. This is why it is important to get them only if necessary at this time period. They mentioned that platelets can actually rise in one or two days and that is what happened. It took one day for my platelets to rise. I trusted my doctor and received wise council from more that one. Thank you and best wishes to you and your husband

[LoveRapheal1]

Sorry for erasing my responses. I am new to this forum and must figure out how to respond correctly. Thank you everyone for your feedback.

[Heather8773]

Yes less transfusions are better when considering BMT.
Thank you . I look forward to seeing more great news of improvement for you!
God bless!

[Lisa V]

Originally Posted by LoveRapheal1

I heard some woman speak of birth control and doctors did give me this at a hospital in Staten Island. My primary doctor said he did not want me on a hormone because it could give me hot flashes and menopause. I asked another doctor in Brooklyn if it was safe to take birth control and he said no because it could give me a blood clot and blood clots can kill you.

It sounds to me like none of these people really understand AA, if they think the risks of birth control hormones are worse than what you are already facing. Yes, birth control pills can increase the risk of blood clots in an otherwise healthy person, but even so, less than one percent of women on the pill ever get them. When you have low platelets, your problem is that your blood is not clotting as it should. If that causes you to bleed uncontrolably during your period, then that is a much greater risk that needs to be addressed. I've heard of women getting Depo Provera shots to stop their periods altogether until their platelet count increases. You might get hot flashes or other side effects, but hot flashes are not life-threatening. I'm no expert on this, but it might be worth asking a doctor about. Just make sure that whoever you ask understands every aspect of your medical condition.

[Karenish]

I am a late responder took me 10 months, too old for bmt so had rabbit instead. am relatively okay now, platelets hover between 50 and 78 currently but i have had a few colds and noro virus - I work full time. Your marrow will do what it has to do in its own time.
I am 53 but in the beginning had issues with monthly bleeds as I didnt realise that AA has sped me through the menopause lol (always a silver lining) so they put me on Northesterone for a while which stops them. When I stopped Northesterone because it made me itch like mad, my periods never came back and they gave me another tablet to take to stop a bleed if it happened (something acid) anyway touch wood I havent. I still get the odd hot flush but nothing that bad. I do know that too many transfusions are not good, because of the overload and various antibodies which you make each time. Get the transfusions when you feel you need them, I would get to about 7 hb before I got really breathless, and now that I have reached 11.5 they said this was why I was able to function with such a low hb, because I am naturally low. Platelets they would always transfuse if you got below 10, but if I ever got to 12 they would wait, then as I say 10th month I got to 12, then 15 then 20, hovered around here for a while then out of the blue 40 the 50 and about a month ago the heady heights of 78, so onwards and upwards hopefully. Try and find a really knowledgeable consultant for this disease, its tricky but do-able. Lots on here have gone on for years and years and years so always keep the faith! xxx Karen (UK)

[LoveRapheal1]

Dear Heather

I believe that you are correct. It has been about 4/5 months now and the doctor told me not to get transfusions unless I really needed them. Two doctors mentioned this. I also read that it can increase risk for graft host disease. It depends on the situation. The doctor told me to consider getting the bone marrow transplant while the donor is available. I have decided to wait the full 6 months. It is scary not getting blood when you need it. Yesterday I had my CBC count done. I asked the doctor if I had time to go pick up my meds. I carried some bags and my body began to hurt (I used to be very athletic) Suddenly I couldn't breath and I became dizzy. My breathing stopped and I couldn't walk anymore. It was fortunate that a nice man helped me who worked at the hospital because no one stopped. It was a scary experience. So make sure his CBC counts are checked because a lack of blood can lead to a stroke or a heart attack. That was a very traumatic experience and I don't wish it on anyone.

Originally Posted by Heather8773

I am sorry you have been going through all this. It can be a scary ride. But it can also be full of hope. Everyone here is amazing, Knowledgeble and supportive
You said you are starting to see a rise in your plateletts. What about your other counts? From my understanding it may take 6 months to a year for counts to continue to climb after ATG.(I'm still looking into this though as my husband is most likely about to start ATG). Maybe someone can correct me if I'm wrong.
Anyway if your counts are starting to go up that's great! I think you said your about 4 months in?
We have been advised not to get platelets unless there are signs of bleeding or counts so low it's necessary. The reasons we were given included, they only last about 7 days and the more often you have plateletts infused the shorter time they help and your body develops antibodies against them faster. Point being get them only if you need them. With that said if you need them get them!
My advise, listen to your body. Look for signs of counts going down. Keep your Dr informed of any changes.
Keep praying courage, boldness, clarity, and peace.
Hope that helped

[Heather8773]

I am so happy you have gotten the blood you needed!!! You are very wise to know signs of bleeding are an ASAP symptom!
Although it seems we are advised to get them when needed, I can not express enough the importance of knowing the symptoms of low counts and how YOU feel. Having the blood you need is most important now. Example of signs
Low RBC
Tiredness or increased tiredness
Less alert or trouble concentrating
Loss of appetite
Pallor (paler skin)
Trouble breathing
Rapid heartbeat
Low plts
Bruising or bleeding
Heavy menstrual cycles
Nose bleeds
Petechiae (small red dots on skin, most common on legs. Can be seen other places. I've met people who had them on their nose)
Bleeding gums
WBC low
Signs of recurring or frequent infections (any)
It seems each pt is different. My husbands first transfusion was bc I called to tell his Dr his nose was bleeding. Plt 14 , hgb falling under 5 .... WAY TO LOW. Now we know. Always inform your Dr of changes. They are not w/you 24/7 and a good Dr appreciates knowing when things change.
I am so happy you seem to be getting better answers from your Drs. I can't remember did you say you have research an EXPERT in your area? I cannot tell you how thankful we are we finally did. It was hard bc we loved his first Dr and staff but these diseases are tricky.
Please keep us updated. Your in my prayers!
Ps I agree w Lisa v and appreciate the others advise. We're in this together.

[Heather8773]

I had a question that I cannot answer for you.. Does anyone know if menstral cycles are making the progress the ATG is doing... Kind of one step forward two steps back? If so talk w Dr again about BC. It seems clotting risk would be SIGNIFICANTLY down if plts are low... Hope someone knows bc I can't answer that for you.

[LoveRapheal1]

Dear Lisa

You are right. My doctor is a skilled specialist. However, I did ask two other specialists at Sloan Kettering what they thought of the pill. I also asked the doctors at SI hospital. They didn't see a problem with me taking the pill. After fainting on the floor. Mind you I couldn't walk or breath....I decided to take the pill. Now it has been 5 months that I was bleeding profusely for days on end and heavy. This time I fainted and I couldn't breathe. My mouth was bleeding.
That is when I learned that with this condition you are never hopeless. You must see other specialists from time to time or ask questions. I took the pill and I am praying that it works. And yes you are correct. Thank you!

Originally Posted by Lisa V

It sounds to me like none of these people really understand AA, if they think the risks of birth control hormones are worse than what you are already facing. Yes, birth control pills can increase the risk of blood clots in an otherwise healthy person, but even so, less than one percent of women on the pill ever get them. When you have low platelets, your problem is that your blood is not clotting as it should. If that causes you to bleed uncontrolably during your period, then that is a much greater risk that needs to be addressed. I've heard of women getting Depo Provera shots to stop their periods altogether until their platelet count increases. You might get hot flashes or other side effects, but hot flashes are not life-threatening. I'm no expert on this, but it might be worth asking a doctor about. Just make sure that whoever you ask understands every aspect of your medical condition.

[LoveRapheal1]

Every time I speak to the doctor she tells me that my counts have been low and she tells me that she thinks I should get a bone marrow transplant. I go to a local hospital here in Staten Island. I told her that the Dr. at Sloan looked at my neutrophils and counts when I just finished the ATG. She said that she has been talking to her and they feel my counts are low. I told her that it only has been 4.5 months and that I wanted to wait for the ATG treatment to work. I don't feel that she is hopeful at all. I spoke to my primary and said that I did not want a bone marrow transplant and wanted to wait the 6 months. I also told him that my platelets increased since the 25th. of last month. I think that is a good sign. I was so low on hemoglobin and blood that I fainted with my bags as I went to get meds and groceries. I was dizzy and I couldn't walk anymore. I was in great shape before this. I feel frustrated. My primary said that he thinks I have hope and that I will be OK because my neutrophil counts have increased. I also have started to take a pill to stop my bleeding because my menstrual is horrible and I was bleeding to death along with blood gushing out of my mouth. I do hope that my counts will increase or stabilize more now that I have taken this pill. Anyway your response gave me hope and meant so much to me. Thank you

Originally Posted by ssdavi71416

SAA stinks. My platelets started increasing at about 4.5 months. The change from 7 to 14 is a reasonable sign. My platelets increased only 1-2 units for several months. It was October by the time my platelets were above 20 and I was able to go off the Aminocaproic acid. My platelets are now at 133. Just remember it is a marathon. You can probably find many post on this forum where people have not responded for a long time. Good luck and God bless.

[LoveRapheal1]

Yes I am praying. I am using the words "already healed" "no complaining" "present not future" and "faith" These are all the things I am thinking and praying for. Listening to these online sermons have helped switch my thinking. I hope that helps "switch my body too." Thank you and good luck to you!

Originally Posted by Heather8773

I am sorry you have been going through all this. It can be a scary ride. But it can also be full of hope. Everyone here is amazing, Knowledgeble and supportive
You said you are starting to see a rise in your plateletts. What about your other counts? From my understanding it may take 6 months to a year for counts to continue to climb after ATG.(I'm still looking into this though as my husband is most likely about to start ATG). Maybe someone can correct me if I'm wrong.
Anyway if your counts are starting to go up that's great! I think you said your about 4 months in?
We have been advised not to get platelets unless there are signs of bleeding or counts so low it's necessary. The reasons we were given included, they only last about 7 days and the more often you have plateletts infused the shorter time they help and your body develops antibodies against them faster. Point being get them only if you need them. With that said if you need them get them!
My advise, listen to your body. Look for signs of counts going down. Keep your Dr informed of any changes.
Keep praying courage, boldness, clarity, and peace.
Hope that helped