Day 110

[squirrellypoo]

I just had a look through my big post-BMT info packet and it says to have inactivated viruses at one year IF you're not on immunosuppressants and there's no sign of GVHD. So I'm guessing the latter is the reason they're not gearing up to jab you yet.

Since I have it here in front of me, here are the inactivated (1 year) and live vaccines (2 years):

Inactivated:
pneumonia
influenza (if Sept-Dec)
Hib (haemophilus influenza??)
Neisseria meningitides (is that meningitis?)
Diptheria
Tetnus
Polio
Hepatitis B if required

Live vaccines:
Measles, Mumps, & Rubella (MMR)
Chickenpox (though this isn't standard, I'm going to fight and pay privately if need be to get it!)

[Julianna]

Congrats on your one year post transplant Ladies!

Thanks so much for being so informative. I feel like I'm listening in on someone elses conversation ...but I guess you wouldn't post it up if you wanted it private. Thanks heaps. I've learnt a lot.

Jules

P.S. Hope you're getting better every day Laura... you seem to be struggling a bit.

[Laura]

So I ended up getting scoped yesterday because my esophagus was hurting so bad. They took biopsies for CMV and GVHD so we will wait and see what it shows.

Laura

[squirrellypoo]

Big hugs, Laura. I had an endoscopy earlier in the year and it was decidedly NOT FUN. I hope you can snuggle up in bed and watch crap tv for the rest of the day today rather than have to go in to work...

[Laura]

Yes, I took today off. Deciding to work the rest of the week or not. I am still having pain, waiting for the results.

Laura

[Laura]

Below is a copy and paste from my caringbridge as it pretty much sums it all up

Day +342

I can't believe that this time a year ago I was preparing for transplant and now here I am almost a year later. I just am in awe and disbelief that it was a year ago. I will be having a party at my house June 12th to celebrate my one year post transplant anniversary.

I met with the pulmonologist today. Prior to the appointment I had pulmonary function tests. My lung function has improved since starting the treatment for the possible B.O., which he also calls GHVD in the lungs. So I will continue with the treatment for a few years minimum. The doctor says that the hope is after a few years my body can co-exist with my cells and therefore we won't have to worry about my lungs at that time. I will have followup pulmonary function tests a minimum of every four months. If I get bronchitis or any other illness related to the lung I need to let him know right away as this could trigger a response that could cause an increase in GHVD in the lungs (because once the bronchioles get irritated it causes room for the GVHD to occur) and a significant drop in lung function, which is the main concern.

Work is going great! We are so insanely busy. It is very crazy at work but I am loving every minute of it! It is so great to be back at work doing something that I love to do (pediatric nurse).

In three weeks I will have my one year testing. Then Ryan and I will be heading to Canada for a vacation. It's time to get back to normal life...thanks to a generous donor whom I will forever be grateful and the almighty Lord.

[Marlene]

Congratulation Laura! Have a great celebration!

Marlene

[squirrellypoo]

That's great news about your lung function, Laura! It sounds like they should be able to keep it under control without too much interruption to your daily life, so that's very good!

[tserdogan]

I am very happy for you Laura.I am from Turkiye and you know USA is far away from Turkiye.I can not come your celebrateConratulations....

[Laura]

Thanks everyone.


Serkan, I have been thinking about you. How are you doing? Are your counts any better? What is the game plan?

Also thinking about Vera who should be celebrating with us at this time too...

Laura
P.S. I just realized you can upload pictures. Here is one from this past weekend. I went to a friend's cabin and it was a blast. My hair is growing like crazy too and I actually like it short...debating to keep it short

[tserdogan]

Dear Laura,

My last counts are great for me.First time my all 3 counts increase slowly.
Hgb:93 Nearly 40 days last transfusion.
Plt:82
Wbc:2,4

Thanks God for this counts...

[Laura]

Serkan,

That is WONDERFUL!!!!!! I am so very, very happy for you. I am so happy to hear it.
Laura

[squirrellypoo]

Laura, you look great!! Heehee, we have the same haircut, too.

And Serkan that's fantastic news abut your counts!

[tserdogan]

Same haircut too

If i can succeed,i put my before and after photos to site.I will try it this weekend.

Melissa,

USA is far away but England is closer than USA.If your wedding area is near to London and if my health is ok,maybe i and my wife want to join your wedding ceremony...

[squirrellypoo]

Originally Posted by tserdogan

USA is far away but England is closer than USA.If your wedding area is near to London and if my health is ok,maybe i and my wife want to join your wedding ceremony...

Hi Serkan. I'd love to meet at some point, that'd be really nice! But I don't think the wedding would be a good time - I've got a bunch of family and friends flying over for it (including 6!! people staying at ours!) plus the stress of organising everything plus sewing my gown plus organising the US reception the week after the wedding... yeah, I'm going to be so stressed out that I don't think you'd see the best side of me! Perhaps it'd be better to meet after we're back from the honeymoon and things have calmed down a bit, perhaps this fall or winter sometime?

[tserdogan]

Hi again,
Wedding time is generally stressfull time for everyone and i guess your organisation is more diffucult.We will talk it again after wedding and honeymoon.

My last cbc update is;

HGB:12.2 last transfusion is 47 days ago
PLT: 115
WBC:2.37

[Laura]

Wow great counts Serkan!!!


I was scheduled 68 hrs this week (Fri-Fri). I am beyond exhausted and don't think I will be able to finish off the week. My whole body aches and my legs hurt really bad from "overuse". Just when you think you are getting your energy level back then you backslide. I guess I don't have as much energy as I think.

Laura

[tserdogan]

Same aches and leg hurts i have too.But everyday it is decreasing.I change my shoes,i prefer comfortable and soft shoes.it works sometimes for legs.

[squirrellypoo]

My god, Laura, no wonder you're tired!! I'm literally working HALF that many hours per week (4 days at 8 hours = 32!). Don't be hard on yourself - any fully well person would be shattered after that!! Is there any way you can get your shifts reduced a bit? Surely this isn't normal, is it just covering while others are ill or on holiday or something? If you keep that up, you're going to pick up a cold from being so stressed and weak...

[Laura]

Melissa,
This was rare. Mayo's pay period is Wednesday-Tuesday so that throws things off sometimes. Then it was my weekend Fri-Sun (12 hr shifts each) and my holiday, Monday, (Memorial day, 8 hr shift) to work. So I had to work that 4 days for the one pay period. Then I had Tuesday off. Then I still had to work my time for the following pay period (Wed-Friday, 8 hr shifts). I took yesterday off. I was so exhausted and my legs and right shoulder hurt so bad. I could barely walk. I literally slept until 4 pm. I debated not working today, but I felt better so I went to work. But now I am home and sore and exhausted. So I ended up working 60 hours this past week since I took yesterday off. Now I have three days off thankfully! Work three days and have three more days off. I usually work 72 hours a pay period (per two weeks). I had to return full shifts or I couldn't return. I work 0.9 FTE. It doesn't help that we are SO short staffed and so extremely busy. We literally had one bed open when I left work today. I run my butt off every day and hardly sit down. But boy do I love it (being busy, not the tiredness). They ask me every day to stay overtime (even today) because we are so short. Oh well, I do love my job, but it is very, very tiring.

[Laura]

Almost one year post transplant and here I sit in the same place I had it..the hospital. One year to the day (yesterday), I was admitted for GI issues. I have been having issues the past three weeks. At first it came back + CDiff and I got treatment for that. But the GI problems never went away and now the CDiff is -. So now I am getting scoped tomorrow to check for CMV and GVHD. I don't feel like it is either but I could be wrong. Since I was on treatment for CDiff, couldn't it be false negative? It is just frustrating. So my bone marrow biopsy and bone density test has been delayed until they get things figured out. Frustrating... Laura

[squirrellypoo]

Oh no! What a bummer... And another scope, too.

I don't think I like the way they're celebrating!!

[Laura]

DAY +365 ONE YEAR POST TRANSPLANT!!!!!!!!!!!!!!!!

Wow, I can't believe this day has actually come!! It seemed like it would take forever to get here and now when I think back it seems like transplant just happened not too long ago!!

On this day, I want to celebrate my donor who graciously gave up her time to donate bone marrow cells for my second chance at life. I will forever be grateful to her. I hope she knows and realizes how special she is. At this time most people can find out who their donor is, if both parties consent. Sadly, my donor comes from a country were we have to wait five years. So four years to go.

The past year has been filled with many ups and downs, but I am forever grateful for just how well I have done. I remember those who did not fair as well...Mark Yates, Vera...etc.

I can still feel the emotions of a year ago..emotions of uncertain, of fear, of what was to come...and here I have passed all that and now I can "worry" about moving on with my life.

Thanks to everyone for their love and support.

I got discharged from the hospital last night after getting more iv potassium. I feel much better but my gut is still acting up. I have a follow up check on Monday.

I have all my one year testing rescheduled and that will happen soon. I will update results as I know them. I did find out that my blood chimerism is back up to 70 percent donor and 30 percent my own cells. (Remember we want 100 percent donor cells.) So it seems like my cells are co-existing pretty well with my donor cells. Pray this remains so for the rest of my life. As it has the potential to become an issue later on (ie. my cells take over and need another transplant).

Does anyone know of any precautions we still need to take after a year? Can I go in rivers and lakes and public water? Do I have to be so germ obsessed? Can I clean the house now? Etc, etc.

But for now I leave you as I celebrate my donor, celebrate God, and celebrate my second chance at life.

[CDChilds]

Hi Laura,

I'm very new to this site and I'm so happy to see and hear your testimony of how a BMT can change your life.

My son Gage (13 yr) has had two ATG treatments so far. One Horse and one rabbit. He's in partial remission right now but if his count continue to decline we may be looking at another round of ATG. He has no BMT donor right now and he has been considered moderate AA since he was 3 years. Gage has only had about 12 transfusions since he was diagnosed.

Does anyone know about the sucess rate with a BMT after having multi ATG treatments? I'm concerned because on some web sites they talk about his chances of engraftment becoming slimmer.

[squirrellypoo]

Congratulations, Laura!!! Happy rebirthday!!

Originally Posted by Laura

Does anyone know of any precautions we still need to take after a year? Can I go in rivers and lakes and public water? Do I have to be so germ obsessed? Can I clean the house now? Etc, etc.

I think that's decided on a case-by-case basis, so it's worth asking your doctors when you next see them. Mine finally said I can eat sushi and soft cheeses again (woohoo I'm going to eat my bodyweight in chevre in Paris next weekend!) since my counts have been firmly in the normal range for months now (with the exception of lymphocytes, of course). I'm still avoiding super crowded places like sweaty clubs and gig venues, and the tube at rush hour, but that's more my hesitation than anything the doctors have said. But it's probably still a good idea to be liberal with the hand santiser even if you haven't had a transplant - nobody likes getting sick!