JennyB's Aplastic Anemia Story

[JennyB16]

Hello all,

I went in to my primary dr's office on May 4, 2015 due to excessive bruising all over my body (over 25 bruises within a 2 week period), nose bleed, and two heavy menstrual cycles. I thought the nose bleed was from allergies, but as soon as the doc heard those three symptoms together and saw the bruises, he recommended that I go directly to the ER for a CBC. He said he didn't want to wait 2-3 days to get the results. Sure enough, my platelets were 8,000 upon admission. WBC was 4.3 and HGB 8.5. They were worried about spontaneous bleeding, so did a brain CT with contrast. I was admitted and they drew about 17 tubes of blood! The next day I had a CT guided bone marrow biopsy under IV sedation, and about 5 days later the results came back with ~10% cellularity.

It was a rough couple of days while they ruled out every virus, leukemia, lupus, etc. (since AA is a diagnosis of exclusion) but by May 10th, which was Mother's Day, I raised enough of a stink (and was stable enough) to be released. I followed up with the hematologist that Tuesday and she seemed unsure as to whether or not to go ahead and call it AA....she kept telling us what it WASN'T A few days later she seemed more sure after consulting with some other docs. She advised to move ahead with a transplant consult, so I went ahead and made an appointment with Dr. Krishna Koumandouri at University of Miami Sylvester, and that eventually was changed to be with his associate, Dr. Denise Pereira. I had to fight my way in to get an appointment sooner than a month and a half away...and I'm glad I did because very soon my transfusions began to be very close together and I realized that moving quickly was my greatest defense against this disease.

We found out by May 27th that my sister was not a match for transplant, and that we would need to move forward with the ATG and Cyclosporine therapy. I did not feel comfortable doing this with the hematologist that I had been going to. She never directly answered how many AA patients she had treated (red flag!) and never seemed certain about when to transfuse/not transfuse (red flag #2!). She actually ended up referring me out to another UM doctor and I saw him two days later (again fought my way in sooner than what they wanted to give me - speak up and be your own biggest advocate!) I told this new doctor in no uncertain terms that while I understood the standard of treatment was the same no matter what, and although I felt much more comfortable with him - that I would like to see THE top aplastic anemia doctor out there. Without hesitation, he told me that was Dr. Neil Young at the National Institute of Health in Maryland. He told me about the Eltrombopag (Promacta) study, and when I told him I was interested he was very excited.

The very next day (Thursday) I got a call from the NIH, and by Friday I had an appointment! I was hesitant to fly because of my severe neutropenia, so we got in the car on Saturday and arrived in Maryland on Monday (16 hour road trip!). My appointment was on Tuesday. Going to the NIH as a wonderful experience, and I am so glad that I took the leap of faith to go. I got another BMB (not sedated this time ), EKG, CT scan, and all kinds of bloodwork. By Thursday I started ATG - they moved quickly!

I only had a a reaction on Day 1. They had prepared me for "shake and bake"; chills and a high fever. They gave me Demerol as soon as the shakes became rigors, and monitored me closely for the fever which they gave me cold packs and Tylenol for. It broke at 104 and I sweated throughout the night. But that was it! No further reaction! The wonderful nurses had overly prepared me, and I am very thankful that I did not get a rash, muscle or joint pains, or any of those other issues that they had warned me could arise. That same day I started the Cyclosporine and Eltrombopag. I was also on IV antibiotics for a large mouth sore, IV antifungal as a preventative measure, Prednisone, and started stomach meds since all of this was rough on the digestive system. Before leaving, I was also given a Pentamidine treatment and transitioned to oral antibiotics and anti-virals.

Today I no longer take the Prednisone, antibiotics, or antiviral. I tolerate the Cyclosporine and Eltrombopag fairly well, with some nausea and with my kidney and liver function slightly elevated at times but only once had to take a two day break from the Eltrombopag. I also take Jolessa (birth control), so its hard to say if the nausea is related to that as well.

My last platelet trasfusion was on Thursday, when my platelets were 12 and post transfusion 74. I usually don't get transfused until under 10, but my nose bleeds were pretty bad so they decided to go ahead. I'm still getting platelets every 5-7 days - which they say is to be expected as platelets will be the last to respond. Last PRBC transfusion was last Thursday, but before that it had been 24 days! Which is a huge improvement from previously every 7-9 days. HGB fluctuates GREATLY but has tested within the normal range a few times (11.2!) and as low as 6.6 WBC fluctuates between 4.4-7.1 in recent labs. Neutrophils slowly climbing and were at an all time high of 340 today.

I hope this helps someone out there who is trying to find as much information as possible! If you made it through allllllll that, you deserve a cookie There's still so much more to the story, so I will post on the forums from now on, and if you have any questions please feel free to e-mail me! I'm paying it forward from an amazing member on here who gave me some input when I was just starting to find information too!

Best of luck to all my fellow AA'ers and all of you who need it

[angela F]

Hi JennyB16,

I was wondering if you could email me as we are going through similar circumstances and we are so scared. My daughter was diagnosed at 15 with SAA on April 5, 2015. my email is afarnec700@rogers.com
Thanks
Angela F

[JennyB16]

Hi Angela,
I'm sorry to hear about your daughter. I emailed you and I hope you send me any questions you may have. I'd be happy to share as much as I can...I know it can be overwhelming and can only imagine with a child! I wish you all the best and hope to hear from you soon

-J

[JennyB16]

Hello Friends!

Just wanted to let you all know that it looks like we are seeing results from the treatment. My last platelet transfusion was 3 weeks ago today, and my platelets have slowly been going up on their own. Post transfusion I was at 35, then 19 about a week later. Then came the best news - my platelets had climbed to 24 by the end of week 2 and were 29 today! This is all just a little over 2 months post treatment.

A few weeks ago we were talking about putting a PICC line back in because of my frequent transfusions and blood tests (transfusions once or twice weekly with blood work 3-4 x's/week!). Now I've cut down on my clinic visits to twice a week and the dr's are very pleased and hopeful with the current trend .

I hope this offers a bit of encouragement to anyone that needs it - keep fighting this, you CAN beat it!

-J

[sands0916]

Hi Jenny,

My friend is also diagoned with SAA and has recently got ATG treatment done. I wanted to know how are you doing now? How are the counts?Please reply.Thanks

[JCBinAZ]

Hi Jenny, my 21yr old daughter just got an SAA diagnosis, looking at the study at NIH. Hoping to hear how you are doing a couple years out?