Ooph My Babies!

I can’t cough. I can’t laugh. Not until I’ve died a million deaths..

Haha just kidding!

A thousand. Maybe.

This is because I’ve just had my ovary removed (oophorectomy) for fertility preservation.

Most aplastic anaemia patients receiving ATG treatment manage to get pregnant without fertility preservation measures. But if my condition happens to be MDS (the ninja), I may need a rescue bone marrow transplant and prior to that, chemotherapy. The doctor also agreed that I should have the procedure done while I’m still well, and not when I’m weak and sick from the ATG treatment.

It may also be a few years before I should get pregnant depending on how stable my condition is.

Regardless, I do want to have kids in the future and I don’t want to regret not having done anything when I had the chance. I want my kids to know that I tried everything I could.

It was a keyhole surgery that lasted around 1 hour. Although I had to do a lot of waiting. Waiting in the room, waiting in the pre-op room then waiting for my blood pressure to go up.. A lot of medical students came by to ask me questions while I was waiting though. I didn’t really mind that. I also didn’t mind having a brain wave monitor stuck to my forehead. I felt like Ultraman!

So she looked through my belly button, looked for the biggest ovary and snipped that one off for harvest! They managed to get 10 good strips out of the 17 they found, and these were frozen and will be used on a rainy day 🙂

So my good friend WT sends me a list of funny videos to cheer me up while I’m in hospital but because I just CAN’T laugh, I’ll have to save it for another day:

WARNING: NOT recommended right after an oophorectomy

 

 

And if you haven’t already, meet me at the beginning: https://beebstory.wordpress.com/2016/01/18/first-blog-post/

Aplastic Anaemia & ATG

Aplastic anemia is a disease in which the bone marrow does not make enough blood cells for the body. The 3 types of blood cells your body needs are: red blood cells (to carry oxygen), white blood cells (to fight infection), and platelets (to control bleeding). When all 3 types of blood cells are very low in number, the person has severe aplastic anemia (SAA). (Be The Match National Marrow Donor Program 2016)

Research suggests that blood cells in an aplastic anaemia patient are destroyed because the body’s immune system attacks its own cells, not recognising that they are its own.

Symptoms of aplastic anaemia are similar to that of myelodysplastic syndrome (MDS) and occasionally, like in my case, these 2 conditions aren’t easily distinguished from each other.

Aplastic anaemia however is more commonly seen in young adults and in Asian populations (that sounds a lot like me!).

Antithymocyte globulin (ATG)

Based on the idea that aplastic anaemia is caused by the immune system attacking its own, ATG is an immunosuppressive drug that aims to stop your immune system from attacking the bone marrow. This should result in your stem cells growing and your blood counts increasing back to normal.

ATG is given intravenously, usually over a few days while the patient is hospitalised for at least a week. This is because the patient’s immune system will be markedly weakened and during the initial course of therapy, his or her blood counts will be severely lowered. This requires monitoring and administration of medicines, such as antibiotics and steroids.

My doctor says this treatment may also tell us if I have severe aplastic anaemia or MDS, on the basis that when the immune system is weakened, the MDS clone may surface.

Like a ninja.

Read about myelodysplastic syndrome here: https://beebstory.wordpress.com/2016/01/25/about-myelodysplastic-syndrome/

And about aplastic anaemia here: https://bethematch.org/for-patients-and-families/learning-about-your-disease/severe-aplastic-anemia/

And if you haven’t already, meet me at the beginning: https://beebstory.wordpress.com/2016/01/18/first-blog-post/

Ingredients for a Crap Day

There are so many things wrong with this screenshot:

1. I’ve forgotten my Dropbox password
2. I have only 61% of battery life left! (I really like it above 80%)
3. “No match”

Today, my doctor tells us that my brother is not a bone marrow match.

We’re also told that my condition is either Severe Aplastic Anaemia or Myelodysplastic Syndrome based on the tests done the week before.

The first-line treatment for both these conditions is a bone marrow transplant from either a sibling donor, or an unrelated donor. We can now cross sibling donor out, like this: sibling donor . When we asked about the search for an unrelated donor from the international registry, the doctor said they also could not find a match. So for now, unrelated donor transplant too.

I won’t lie, these are the ingredients for a crap day.

But doctor recommends I try an immunosuppressive drug called, antithymocyte globulin (ATG).

I should be admitted into hospital as soon as possible to start ATG treatment.

My mum asks the doctor many questions while holding back her tears.

Crap day 😦

 

If you haven’t already, meet me at the beginning: https://beebstory.wordpress.com/2016/01/18/first-blog-post/

An Intro to Bone Marrow Transplantation

What is it?

• A process of replacing diseased bone marrow with healthy marrow from a donor

How does it work (for the patient)?

• The patient undergoes “conditioning” therapy, such as chemotherapy to completely remove his or her bone marrow to make way for the new, healthy marrow
• Just like a blood transfusion, the marrow or stem cells are infused into the vein
• The transplanted marrow or stem cells will produce normal blood cells within 2 to 3 weeks

How does it work (for the donor)?

• An individual may test to see if he or she is a match by registering with their local bone marrow registry (eg. www.bmdp.org)
• If the donor is a match, the donor will be tested to see if they are fit to be a donor

Bone marrow is harvested either via:

1. Bone Marrow Harvest    

Similar to a bone marrow biopsy, a short procedure is done to remove bone marrow from the pelvic bone using a needle. The donor will be under general anaesthesia (GA) and the procedure usually lasts between 45 to 60 minutes. Less than 5% of bone marrow is harvested from this procedure and this will naturally regenerate within 4 to 6 weeks.

2.  Peripheral Blood Stem Cell Harvest

The donor will receive 4 injections of Granulocyte-Colony Stimulating Factor (G-CSF) to stimulate the growth of stem cells in the bloodstream. Similar to a blood donation, the stem cells will be collected in an outpatient procedure on the 4th day. This usually takes between 5 to 7 hours and the donor is free to go home after the procedure is completed.

You can test specifically for a loved one to see if you’re a bone marrow match. But if you’re willing to help a loved one, why not try to save another person’s life with your bone marrow? This is what my doctor told me when we asked if we could get our friends and relatives tested to see if they would be my match.

And I have to say that I agree with him. I mean, I would be over-the-moon grateful and thankful if a stranger were willing to donate his or her bone marrow to lil ol’ me 🙂 You wouldn’t just be saving the patient’s life, but also the souls of his or her loved ones. Since my diagnosis in January, a day hasn’t gone by without my loved ones worrying about me.

To learn more about bone marrow transplants and being a donor, visit: http://bmdp.org/be-a-donor/faqs-for-donors/faq/

 

If you haven’t already, meet me at the beginning: https://beebstory.wordpress.com/2016/01/18/first-blog-post/

Um, can I get a Green Whistle please?

The doctors in Singapore need to confirm the diagnosis so they decide to perform another bone marrow biopsy. My brother (one and only) also gets his tissue type tested. If his tissue type matches mine, he’ll make a good bone marrow match.

Unfortunately (for me), they don’t do green whistles in Singapore! So I prepare for a less comfortable bone marrow biopsy. That is an understatement because it hurt so so much more this time. Because: A) No Penthrox and B) They had to drill deeper. #somuchregret

Maybe when I’m all better I can figure out a way to introduce Penthrox in other countries besides Australia. I just think that it’s a lot of unnecessary pain to go through. Especially if you’re a kid, or a big kid like me!

It’ll take about a week to find out if my brother is a match and also a clearer idea of what I have. More waiting!

On a side note, I’ve been spending lots of time playing this game on my phone: WordBrain Themes. Really fun yet frustrating at times. But super satisfying when you get it right!

I wanna be a true word master!

 

If you haven’t already, meet me at the beginning: https://beebstory.wordpress.com/2016/01/18/first-blog-post/

Time to Say Goodbye

We’ve decided to bring this all back to Singapore. By this I mean me, the situation of me.

Firstly, because I don’t have Medicare and therefore cannot be treated in a public hospital like RPA. Secondly, I can be closer to my family and my brother who might be a bone marrow match (him and his wife are also expecting a baby boy soon!).

I want to thank all the lovely people who’ve made me feel so loved and treasured throughout this process. My friends and family, doctors and nurses, and strangers, thank you 🙂 for the food, the puzzles, the laughs, the hugs and so much more!

I could not have done this alone.

 

If you haven’t already, meet me at the beginning: https://beebstory.wordpress.com/2016/01/18/first-blog-post/