IamA It's been exactly one year since I received a bone marrow transplant. I'm one of only a few dozen to beat MonoMac Syndrome AMA!

I am on a list to help give a transplant if anyone is a match for me and I get picked. How exactly does the operation work?

The operation could be two ways that I know, either you are sedated and they stick a few needles in your back and extract bone marrow or I believe you can sit for 8 hours with both arms hooked to IVs as your blood goes through some machine. Honestly I only heard the second one from my sister.

If anything I would do the first one, you are sore fore a few days and the procedure you aren't even awake for. I hear people complain all the time about whether they should sign up because they are scared of the pain. But honestly, you are saving someone's life and if you are able to do it, you are a wonderful person!

When I signed up they mentioned the blood transfer operation I think. I would gladly suffer a small amount of pain for a few days to save someone's life, as I hope (if I ever need anything) that someone would do the same for me.

Thanks again, and am glad that your transplant was successful. I hope you 'Live long and prosper'!

Thanks so much! Good luck to you too! Hopefully some lives can be saved with you bone marrow!

How did they figure out you had it?

My sophomore year of high school, so March 2014, I got mono and pneumonia pretty seriously. The first thing they noticed was I had very low blood counts which is why they said oh you should get to the ER immediately. Few months later, I am feeling great, fully recovered but my doctor kept saying you counts are still awfully low. He kept digging into it, many blood tests and bone marrow biopsies later, they discovered that I had this rare syndrome.

So it was a good thing you got mono and pneumonia. Glad to hear that your doc actually did some digging instead of just saying "that's how you are" like so many do anymore.

Ya thank god for that damn mono and pneumonia because even when I kept saying "oh no I'm fine, no need to do more tests," he kept digging and digging. And well then it lead to MonoMac discovery. So ya my doctor is a really amazing human.

What was the scariest moment? Was there a moment where you felt like you beat it?

Scariest moment for me was when I was admitted to the ICU. It wasn't the ICU part that was terrifying, it was finding out that I needed a catheter inserted in me while I was AWAKE! Never again.. that was some painful shit right there.

The moment I felt like I had done it was actually when I received the transplant. You can see in my first proof as I was raising my arm, it was 11 pm, I was on Benadryl, and even though everything had just begun, it felt like I had finally done it.

Urinary catheter or central venous catheter?

Urinary...

First off, congrats. Secondly, what was the biggest take away from your whole experience?

Thanks so much! (Just a quick thing ahead of time, I suck at explaining things now) And wow that's a great questions honestly. I view life in a different way now. I have always had a great sense of humor, but I have learned to laugh at things that normally one wouldnt laugh at. For example, my chemo, I joke about all the time now. I also feel more sympathy for people who have gone through any cancer or similar. I have a stronger outlook on the world. Not sure how to put it but anything taken for granted before, I longer do. Feel free to ask more cause I think that was some awful explaining

[deleted]

It is a genetic mutation, so somewhere in my forming, it went quite wrong causing this mutation. So we tested my entire family, all 6 of us. I was the only person with it. My two sisters happened to be perfect bone marrow matches.

How bad was the graft vs host where you had a family match?

I did not have any graft vs host disease thank god due to the family match.

That's awesome! I had aplastic anemia and was facing a bone marrow transplant. GVH scared me due to everything else that went wrong. I hated the isolation. Months of sitting at home or having to mask up and not touch anything at the hospital visits.

Did your platelet and red cell counts stay up the whole time or did they take a dive too?

I'm not actually sure, I can't remember much in the past year to be honest. All I know is that after my ANC hit 500 and I was still in the hospital, they ended up dropping lower than 500 but doctors said it was normal.

I'm currently on my last round of chemo for leukemia and have a bone marrow transplant next month. I have to be honest. The thought of graft vs. host terrifies me. Was there ever a thought like that going through your mind? If so, how did you cope with it?

What is graft vs. host? If you don't mind explaining.

Graft versus host disease basically refers to the body attacking the bone marrow graft. While not necessarily fatal it does carry that risk. I guess I'm focusing on the extreme negative but sometimes I can't help it.

Well I'm sure in your situation it gets tough not to think of the negative. I know I'm just an internet stranger but I'm praying for you and sending all the positive vibes I possibly could. I'm very sorry you're going through this and hope all the best for you! Thanks for the explanation too.

the best way through my entire transplant was humor. That was a life saver, I was always joking about chemo and how I now wouldn't need a haircut for months. It just kept everyone in my family calm to see that I was still smiling at times ever though it was so hard and taxing.

Also music.. I listened to Clint Eastwood by Gorillaz at least 80 times since it was on repeat.

I honestly never knew about graft vs host disease till after I was released from the hospital and doctors talked of it. Only at one point did I think about it like shit that's scary. But the thought never really formed much since I have a sibling donor who was a perfect match.

My friends that I met in the hospital didn't always have sibling donors and they're doing great. So I can't talk for every case but the doctors eased the thought that if there was any, they had some medications that could ease it.

Have any other questions feel free to ask, I'm very open with it all and best of luck to you!

I'd imagine that being in isolation for that long was taxing. Can you elaborate more on the recovery process and what struggles you went through during that process time?

Sorry for formatting, typing on my phone. But after my two times I was readmitted, I was finally back at home. Restrictions being, no physical contact with any humans outside the house and no humans other than family in the house.

The chemo caused me to lose all of my energy, literally all of it. I felt like complete shit 24/7. The chemo causes about a hundred side effects. Some of which includes no appetite, throwing up every morning (which I managed to throw off because I went on steroids). I lost all tastebuds but that didn't happen till later.

My dad kept me moving a little bit by making me walk around the block with him and the dog at least a few times a week. I lost basically all my muscle in my legs. I couldn't go up the steps two at a time, which is a weird thing to think about. But when you have no muscle you have nothing to help you up, so it was kept to one step at a time.

Major dry mouth was one of the worst side effects, on your own you're supposed to be drinking about 2-2.5 liters of water everyday. but with the dry mouth, every time I felt slight discomfort I would drink. I also developed this horrid mucous-y feeling in my throat making me not want to talk at all or eat.

Not sure if any of that was helpful. But for recovering more, it was just basically lay low for your 9 months of isolation. I got random spurts of energy once the whether got warm again so that was nice. But it's been a full year and I still don't have my full capacity of energy back. I was planning on doing sports but never could due to lack of energy.

Hopefully that answered it, if not, keep asking away

Did you ever consider getting more than one Mac, to cure your MonoMac?

I got a shit ton of Mac

What was your reaction when you finally got a diagnosis and realised how serious this was? How long did you have to wait to know your sisters were a match? And how was it decided which of the two of them would donate?

When I first got the diagnosis I did not realize how serious it was. I was like Sweeeet no school for the rest of the year? I thought I would be able to be out and about outside as soon as I was released from the hospital. Later on in November of 2014 I was like shit this is some serious stuff but never fully realized what was going on. I contribute this to my high spirits and humor literally the entire time.

It took like a solid month for them to finalize all of the results on who was a perfect match.

My sister who did not have a spinal cord injury two and a half years ago was chosen. She is closer in age to me and really really wanted to be a match.

How was your bone marrow transplant?

Well I have written in other comments what after transplant was like and some basics in the info for the post. If you're more specific, I'll probably be able to tell you better. But overall it was definitely the hardest shit I have ever done in my life, but as long as you are in a good environment with family or friends at your side, it will go by faster than expected. Looking back, the transplant feels like a few months ago. I can't remember most of my time in the hospital because of all the drugs and chemo, so I guess that is a plus. Also I hope it all ends well, best of luck to you!

Were you afraid?

In October, right after diagnosis, I was not. I was rejoicing that I would not have to sit in school anymore. During the transplant and chemo and all, I was not probably due to my high spirits and heavy drugs I was on. Afterwards, I actually broke a ton of my restrictions on isolation so I had no fear then.

Overall, not really, no.

How did your operators get your body to create white blood cells again?

Through the chemotherapy, all of my bone marrow was killed. On December 11, 2014 when my sister's bone marrow was injected into me, her bone marrow was just at the start of growing into me. Over the next few months it grew into me more, slowly becoming my bone marrow. I am now a full year out of transplant and I still do not have all of the vaccinations and full level of immunity. My immune system won't be fully healthy for another two years I believe.

My sister's bone marrow is now fully mine and my new bone marrow started producing new white blood cells.