Countdown to BMT!

[squirrellypoo]

Another boring clinic appointment this morning! I was in and out in under 30minutes today including bloodwork - I wasn't even late for work.

The doctor today called me "almost perfect", which I thought was pretty amusing. She's going to ring me back later today with my liver function results to make sure my Dianette (to fix my hormone issues) hasn't adversely affected those, but they take hours to come through so they weren't back yet for my appointment this morning.

Edit: the liver counts are back in, and *gasp* they've fallen quite a bit in the last two weeks, so that's great news!

Otherwise they're very happy with me and made my next appointment for a month away, which is a step up from the fortnight frequency I've been having.

I even got to show her the map of Saturday's run on my iPhone - my longest one yet at just over 8km. I'm starting to feel better about the 10km I'm running in July now (if any of you would like to sponsor me, btw, the link is in my sig - I'm raising money for the Anthony Nolan Trust, which is the UK's bone marrow registry charity). Two months to go!

[Laura]

Such great, awesome news Melissa! I am so happy for you. How are wedding plans coming?

[squirrellypoo]

Nothing new to report, health-wise, as I'm now only going in once a month, but I'm currently getting SO excited about holiday and wedding plans!

We haven't been away anywhere since Feb 2008 (and that was only to a very cold, wet, and windy Dublin to visit family) so my fiance and I are super excited to have just booked the Eurotunnel to drive down to Paris for a weekend away at the end of June. And we just booked our plane tickets for our American wedding reception & honeymoon in NYC for Sept/Oct so it's starting to feel real! We're nearly done designing the wedding website and invitations, and I just finished sewing the second bridesmaids dress last night, so I'm feeling pretty good about being on schedule with those, as they took exactly as long as I allotted for them. And we've even just arranged to go have some canape and dinner food tastings at the venue the day before my big 10k race in July, so that's fun, too!

So London, Paris, and New York in the same 6 months, that's not too shabby to look forward to!

[Julianna]

That sounds awesome Melissa! Wow you're really getting around. Very happy for you. Jules

[Laura]

wow Melissa, what all exciting things. I bet it must feel just wonderful to be back into normal things and doing such amazing stuff. Glad to hear wedding plans are just moving along. Not that it is as exciting at Paris but Ryan and I are going to Canada for a week (after my one year testing) to explore.
Laura

[squirrellypoo]

Since Laura was kind enough to share her photo, here's mine from this weekend!

[Laura]

Ha, we do have the same hairdo!!

Looking great Melissa.

[squirrellypoo]

Woooooohoooooo!

NO MORE BONE MARROW BIOPSIES!! heeheeeee! I'm doing a little victory dance right now! The doctor I saw last time said she'd check with the team to see whether my one year BMB was really necessary since my counts have been stable for the past 6-8 months and all my post-transplant chimerisms and BMBs have been 100% donor, and my post-transplant nurse just emailed me to say I don't have to have one! Yaaaaaaayyy! This has totally made my day.

Originally Posted by Laura

Are you doing a bunch of tests for your one year post transplant?

I know I've got a bunch of blood tests scheduled for my appointment on Monday, but I just asked my nurse about other tests or vaccinations and she said "We might consider lung function and bone scan or leave that until end year 2" so I guess I'll find out on Monday. *shrug* I'm not really fussed about the other stuff, I just didn't want any more bone marrows!

I'm going to bake a big cake to bring in to my office on Thursday, and my fiance's taking me out to a SUPER posh tea shop at lunchtime (they measure the water to the precise degree and have timers for how long to steep each tea).

And my race is on Sunday!!! I'm going to stencil "one year post transplant" on my Anthony Nolan running jersey tonight.

[Laura]

Awesome Melissa! That is great! Good luck with the race. Happy one year!!

Laura

[tserdogan]

Good luck.I hope you will get the best result.

[starz]

That is such great news, especially the no more BMB. What a great job those cells have done for you. All the best for your run,
Starz

[squirrellypoo]

Woop! HAPPY REBIRTHDAY TO MEEEEE!!

Today is my one year anniversary! It simultaneously feels like decades have passed, and just a blink of an eye. I still can't quite get used to looking down and seeing pink, tanned hands with bulging veins. They don't quite seem like mine!

I've got my one year checkup on Monday so I'll report back then, but my only real ongoing problems are my hormones (#1 big problem. The gyanae/endocriine specialist is just SO slow), and my liver (but that's getting much much better now that I've got some estrogen in me). All in all, I really can't complain.

Thanks so much to everyone on this forum who have given me SO much support over the last ten months. You all made a crappy situation much easier to handle.

(and Starz thanks so much for sponsoring my run, too!)

[Neil Cuadra]

Congratulations Melissa! We're glad to help you celebrate.

Your successful battle against aplastic anemia, your transplant story, your willingness to share and help others, and most of all your positive outlook and enthusiasm have been an inspiration to many in these forums and have made you one of the most valued members of our community.

You deserve all the good things that come your way, including today's anniversary celebration and your victory run this coming weekend. Whatever number they put on your jersey, it means #1!

[mausmish]

Congratulations and happy birthday, Melissa!

[Laura]

HAPPY BIRTHDAY! Melissa!!!!!!! I am so happy for you on this day!

Hopefully they can get those other issues resolved soon.

Let us know how the race went.

Laura

[Ruth Cuadra]

May this be the first of many, many rebirthdays you celebrate in good health! Congratulations, Melissa.

Best,
Ruth

[starz]

Happy Re Birthday! Good running for your 10K. Thanks for the posts!
Starz

[squirrellypoo]

Ugh I've had a crappy cold with a tight, barking cough since Wednesday which meant that I hardly slept at all over the weekend because every time I lay down, I just continuously cough.

So since I had a dermo appt yesterday anyway, I went into HOP to see if they could do anything and make sure it wasn't anything worse (GvH, asthma, allergies, etc). So they took a bunch of blood tests, swabs, and ops, then the registrar checked me over and concluded it was indeed just a cold and prescribed me broad-spectrum antibiotics, a ventolin inhaler, and some codeine cough syrup. The latter totally knocked me out so I got a really good night's sleep last night, finally!

But they rang in today to say my throat swab came back positive for adenovirus (which wikipedia says can cause a whole range of things from colds and coughs to pink eye to bladder infections to peneumonia) so they want me to come back in for more blood and urine samples to make sure it's only manifesting as a cold...

But it was nice to see that the nurses are really using my race photo to motivate other patients. One of the nurses, Tom, that I know from way back, pre-transplant when we were at St Thomas's, laminated it and said he's been showing it to all the pre-transplant patients and the long-time AA patients. So I'm really happy that it's helping to give people hope.

[mausmish]

Hope you're feeling much better soon, Melissa - please keep us posted when you feel up to it.

[Laura]

Oh Melissa! Please feel better soon. Adeno can get serious so make sure they keep a close eye on it!! I will be away from internet for awhile so I will be anxious to get a report when I get back. Thinking of you!

Laura

[mausmish]

Melissa, just wanted you to know you're on my mind. I hope you're doing well and feeling much better.

[squirrellypoo]

oh thanks guys! The cold is still lingering on... My cough has loosened and now I've got a truly astonishing quantity of snot coming out in tissues and constantly down the back of my throat (sorry for that wonderful mental image!).

But my neighbour has got the exact same symptoms as me and she's still fighting it off and feeling rough, too, so at least I'm not faring any worse than someone with a normal immune system!

I've got to go in for a scheduled liver function blood test early next week anyway so I've decided if I'm still feeling bad then I'll pop into HOP and see if there's anything they can do. Until then, buy stock in Kleenex...

[squirrellypoo]

Finally!!!

After three FULL weeks of feeling miserable with this Adenovirus cold/flu/whatever, I woke up on Saturday after actually felt okay. And then yesterday I felt positively normal!! I absolutely cannot wait to go on my run on Wednesday, it's been way too long and my feet are itchy (figuratively).

And I ran into my neighbour while out on deck yesterday and she said she woke up suddenly feeling better over the weekend, too. So apparently it's like one of those 24hr bugs, except it's 3 weeks! (ugh)

[starz]

Phew! Glad you are feeling better finally. Its such a relief to know that someone else had the same thing that lasted the same as yours.
Gem

[Laura]

So glad you are feeling better!! How are your counts?

Laura