Countdown to BMT!

[Laura]

Oh that stinks! Feel better.

[starz]

Hope you get better soon. I need to get my vaccination done, but Nick cant have it yet. X

[cathybee1]

Melissa, hoping you feel better soon. And that the vaccine will make the course of this much milder than it would have been otherwise.

[squirrellypoo]

I dragged my sorry arse into work today. I was just so sick of staring at the walls and I couldn't bear it for another day. Yesterday was the first day I could actually just sit up all day.

And thanks for the encouragement, everyone. I personally think the vaccine did absolutely nothing for me whatsoever and that the swine flu I have/had must be a mutated variant that they didn't anticipate in the flu vaccine. Because I honestly cannot contemplate how anyone could've had a worse dose of swine flu than what I've just had. I can completely understand now how people die from this.

[Laura]

Oh wow! Try not to push yourself too much!

Laura

[squirrellypoo]

So I'm running another 10K race this year for Anthony Nolan (the UK's bone marrow registry charity) and I told AN's press office that I'd be happy to do interviews or photo ops or whatever to try and raise awareness and get more donors on the list, and apparently the response to sending out the press release was "rather high". The first interview looks like it's going to be for That's Life magazine, which I find incredibly funny. I'm hoping this might reach a bunch of women that may not know anything about bone marrow donation.

The two main things I'd like to get across to people are:
1. Donation isn't the horribly painful procedure it used to be - if you can handle giving blood, you can handle donating marrow
2. Being on the organ donor list does NOT put you on the bone marrow donor list, it's a separate process

Oh, and I'm back to normal (well, my normal) after the swine flu now. Luckily no lingering coughs!

[Greg H]

Melissa!

That is absolutely super! Very very nice of you to be willing to do this. I bet it will in fact really help promote awareness.

Way to go!

Greg

[Neil Cuadra]

That's Life looks rather sensationalist, but that may be just what the doctor ordered. Get your message out there and cause a sensation!

[Laura]

Awesome!!! Keep us updated on the process!!!

Congrats!!
Laura

[squirrellypoo]

Whoa a full two months later...

Anyway I've not had anything major to report so I haven't posted, but my birthday was on Friday so I thought it was a good point to post. Two birthdays ago, I'd just finished the embryo freezing, was very ill, and waiting on my transplant... And last year I barely had any hair, had severe acne, and still had to be crazy careful around coughing people. So not bad of an improvement this year (18 months post transplant)!

Here's my birthday photo from my sewing site:



My only ongoing issues are with my hormones, which are just bad/nonexistent/whatever. I've finally been referred to the gynae/endocrine Early Menopause clinic at Guy's hospital, after being totally ignored for a full year at the pathetic King's gynae/endocrine unit, and I'm now being seen by a Prof at Guy's, and I get the feeling that everyone there actually cares. Which is a nice change. The only problem is that I have to go hormone cold turkey for 3 months in order for her to see what's going on without the pill masking it, so I'm currently at hormone ground zero. Thankfully it's not been too bad, but I've noticed a few acne spots on my chin since I stopped, so the dermatologist is going to have fun with that (she's had me on Accutane for ~5-6 months to deal with the hormone-related acne).

But it least it feels like we're trying things to tackle the remaining issues, rather than just sitting around doing nothing, quietly suffering, so even these problems are an improvement if they mean they might lead to a proper understanding of my hormone issue...

Blood-wise, I'm totally normal and have been for so long that they don't even tell me my numbers anymore!

[mausmish]

You look fabulous, Melissa! Happy to hear you're doing so well and hope the hormone issues are sorted soon. Karen

P.S. Belated Happy Birthday!!!!

[Lori Patrick]

Melissa, Great News! You are an inspiration to many. Keep up the positive attitude and the improvements! Lori

[squirrellypoo]

Just an update since I had a HOP appointment yesterday and my last visit there was 5 months ago!!

Not to brag, but my blood counts are awesome:
Wbc 5.02
Hb 13.3
Plt 289
Neuts 3.6

One of my liver results was a bit high (I have a feeling the two big glasses of Pimms & lemonade the day before were to blame) so I've got to repeat that in two weeks just to make sure it was a blip. Other than that, I've just got my ongoing gynae/endocrine/hormone/menopause issues and the related dermatology stuff, but day-to-day I feel absolutely great.

My big 10k race is in two weeks time (30 May) so I've upped my training mileage for that in addition to the 6km walking commute I do every day to work. I've linked my fundraisng page in my sig if you fancy giving some money to the Anthony Nolan Trust (the UK's bone marrow registry charity that found me my match), but I'll give a full report in the Events forum with my race time after I'm done. I definitely want to beat last year's time (53:48), but I'm aiming to try and beat my pre-illness personal best (51:13). In a spectacular, perfect work, I really want to break the 50 minute mark, but I think that might have to wait a few more years!

[squirrellypoo]

Woooooooo!

Happy rebirthday to me, happy rebirthday to meeeeeee!

Two full years!

My husband's taking me out to dinner tonight and I'm celebrating with a good long run tomorrow, a bunch of baking, two parties, and helping the Anthony Nolan's cheering section at a race on Sunday. So a normal weekend for me these days!

[Neil Cuadra]

Melissa,

Has it really been 2 years already? The time zipped by as fast as you in a 10K!

Congratulations!

[mausmish]

Woo hoo, Melissa! A great cause for celebration. Thanks for being an inspiration to us all. Karen

[Greg H]

Right on, Melissa! Happy Re-Birthday!

Greg

[tserdogan]

Happy rebirthday Melissa.

[starz]

Happy rebirthday, great news. Hope the celebrations werent suitable for a 2 year old!
Starz

[Laura]

Sorry I am late in saying this...but I was thinking of you!!! HAPPY SECOND BIRTHDAY!!!!!!!!!! I hope it went great!!!!!!!!!!! Good luck on the race...or should I say...I hope the race went well!!!

Laura

[squirrellypoo]

I've just been to my GP this evening and had a surprise - apparently the blood tests he'd ordered earlier this month showed that I still have immunoglobins for MMR *and* varicella! So it's great that I'm spared a few jabs and the private prescription fee for the chicken pox (it's not a standard vaccination in the UK), but I just can't get my head around how I could still have the immunity post-transplant... Has anyone heard of this happening before?

[squirrellypoo]

Just a small update:

1. A gynae scan today revealed I no longer have PCOS. Though a BMT seems a bit of a drastic step to cure it, it's a nice side-effect...

2. One of the haematologists spoke with a virologist about my having immunoglobulins for MMR and varicella, and

The feeling is that the immunoglobulins detected are most likely have been transferred from your donor. This is recognised to happen in some patients post-transplant. However, there is concern that the immunoglobulins which you have may not be as effective or may wane with time. It has been suggested that it would be best that you receive just one dose of primary MMR vaccination as well as the VZV vaccine to be safe and we repeat the immunoglobulin levels thereafter.

So I'm taking a prinout of the email to my GP tomorrow to try and book my jabs again...

[Laura]

Originally Posted by squirrellypoo

Just a small update:

1. A gynae scan today revealed I no longer have PCOS. Though a BMT seems a bit of a drastic step to cure it, it's a nice side-effect...

2. One of the haematologists spoke with a virologist about my having immunoglobulins for MMR and varicella, and

The feeling is that the immunoglobulins detected are most likely have been transferred from your donor. This is recognised to happen in some patients post-transplant. However, there is concern that the immunoglobulins which you have may not be as effective or may wane with time. It has been suggested that it would be best that you receive just one dose of primary MMR vaccination as well as the VZV vaccine to be safe and we repeat the immunoglobulin levels thereafter.

So I'm taking a prinout of the email to my GP tomorrow to try and book my jabs again...

Hi Melissa,
What did u find out? The response u got I have heard before...can't remember if it was told to me or I read it somewhere or what....but I do feel that is the response used to others too. I still need my two year.....post poned while on these meds for gvhd.

Hope u r well.
Laura

[squirrellypoo]

Just a few updates:

1. I've got five more days to go on the isotretenoin (accutane) to finish the course, even though the hormone-related acne has been gone for a good year or two. The dermatologist doesn't want to see me again!

2. The new gynae/endocrine unit at Guy's is GREAT. They have definitively said now that I am in early menopause, and given me an HRT patch (Evorel Sequi) which is supposedly the best for libido. It's one type of patch for two weeks, then a different type for the other two weeks. The first patch is WONDERFUL and fixes all of my issues and is fabulous. The second patch - meh. But half the month is better than none at all, and I'll see if I can get them to tweak it at all when I'm back there in February.

3. HOP appointment on Monday, and my counts are still great. I only got an oral count but it was something like Hb 13 platelets in the 200s and neutrophils in the 2s. I've had my MMR and chicken pox live vaccines, and HOP want to stop my Acicolvir now, too. So I'm finishing up what I've got (a month-6wk supply) and then I just really need to be on the lookout for shingles reactivation. But they don't want to see me until the end of January, and they say my liver counts are much better now, too.

So - no hospital visits until after Christmas! Though I will need to stop in at the GP at some point and get a flu vaccine...

(And I still walk 6km to/from work every day in addition to the 20-25km I run every week and the heavy lifting and DIY work every weekend while we're renovating our barge)

Oh and we're off to Hungary next week for our anniversary.

[Debbie W]

Melissa,

Happy to hear things are moving along and have a great trip for your anniversary!

Debbie