Countdown to BMT!

[Laura]

What do your labs look like?

Laura

[squirrellypoo]

Oh geez I hear you - I am chomping at the bit to go back to work!! I'm hoping now my line's out (wow a picc removal is SO MUCH EASIER than a hickman removal - I didn't even need an OTC painkiller, didn't feel a thing) I can start running and doing some easy weight training, too.

I've got thursday's bloods in front of me:
WBC 4.47
hb 11.9
plt 227
neut 3.68

I've seen the hb go up as high as 13 and the platelets in the 390s but they just jump around a bit so I'm not concerned.

And I had no idea more cells could be so bad. It'll be interesting to see what serkan's experience is...

[tserdogan]

Hi all,

Laura,
i took donor cell three or four weeks ago but it was so low only 10 mg.i also took donor cell after 60 day from transplant and 200 mg.I did not have gvhd problem.I have only voice and cough problem.My voice has gone and i have a women voice now:) My right chordae vocalis is paralysis after transplant.This situation is sometimes making respiration problem. we dont know what was the reason of this.My doctor said it was noropatic.Next week i will go to voice therapist.

My doctor said to me they will give me donor cell from time to time to my bmb works enough.GVHD risks always problem,but i dont have big problems.Prednisone is rather big problem gvhd for me:)

You know my counts so low also i took 3 bag red blood at one month and my doctor is not thinking second transplant for me.One of the patient of my doctor has only 11 % chimerism,and his patient has got normal life years and years.

Serkan

[Vera W]

Laura I sent you an email not too long ago. Jan 1st was my 6 month anniversary also. I keep hurting my back muscles and they keep telling me that it will continue till i am free of the immune suppressants, we are in the middle of billing and it is all individual checks lots of data entry and we hired my step son to help. Don't forget Heather too she had a really rough bout with GVH and is down to 96 pounds. I am off gto my chiropractor. Get better guys!!!

[squirrellypoo]

Mostly good news from my clinic appointment yesterday - the mixed bag being my CT results... Apparently some of the liver lesions have gone away, but others have come to take their place, so there's no net gain or loss. So now the doctors think that perhaps this is a drug reaction instead of an infection to be able to withstand 4 months of daily IV antifungal treatment like that. So the upshot is that they're switching me to oral Posaconazole but they're monitoring my liver function tests very closely and if they get worse, I may have to go back on the IVs after my next clinic appt in two weeks.

But in the meantime, they're extremely happy with me, I'm off the Folic Acid, too now, and I can go back to work finally!!!! :D And since they had to rip out my PICC line last weekend for the infection, when I go in for blood tests now, it's just fast-tracked through the phlebotomy dept instead of waiting around in HOP for hours (but even better news on that front is that the haematology dept at St Thomas's has FINALLY switched over to Guy's after over a year of delays so hopefully from Feb I can do my biweekly blood tests from there instead of making a big detour to Kings or StT before work in the mornings. Guy's is only a 15min walk from me and on the way to work anyway!).

And my fiance and I celebrated with dinner at a Greek restaurant last night. Mmmm.

Oh and my counts were awesome yesterday:
WBC 3.75
Hb 13.8
Pl 422
Neut 2.67

And I don't think I said earlier but I got my first haircut last week and switched over to my contact lenses for the first time in over a year (yayy yayy yayy) and the nurses at HOP completely didn't recognise me until I started talking. :)

http://www.fehrtrade.com/images/1674.jpg

It's weird having short hair after years of very long hair. Everyone says it suits me but I can't wait to grow it out as short hair is so much work, with the blowdrying and styling goo to make it stay put!!

[carolyn]

Hi Mellissa,

Wow you look really great with the short hair! It does suit you. It must have felt really good to get the haircut and to be able to wear your contacts! Great news that you can be monitored at Guys rather than trekking over to Kings, i used to be seen at Guys and the heamotology staff are excellent. Your progress has been amazing, i'm SO happy for you!!!

Carolyn :O)

[Laura]

Wow you look so good! I can't wait to wear contacts again too. Your counts look amazing. I hope that you don't have to switch back over to IV antifungals either. What do you do for your job? Are you nervous to go back, excited? Let us know how the return to work goes. I am so happy for you.

Laura

[Vera W]

Hi Melissa, Have you set anther wedding date? My hair is pure fuzz, you look cute!

[squirrellypoo]

thanks, guys!

Laura I work in IT in a small company and everyone there is used to the "if you're sick, work from home" thing from my pre-transplant days. And I just spoke to my boss and I'm going in tomorrow afternoon to get my desk sorted and start to get back up to speed on everything and start properly when he's back (conference) next week. I'm very excited!!

And Vera, when it was apparent that I wouldn't be recovered in time for the wedding last year, the venue very very compassionately allowed us to change the date one year in the future, so it's the same weekend, only one day earlier to keep it on a Saturday - 18 September. Which should hopefuly give us enough time to save up to pay for it, and for me to sew my gown. :)

[tserdogan]

Hi All,

I heard good news from mini transplant team.Go us:)

Dear all i have problem about muscle weakness.My leg and arm muscles are so weak.do you have muscle problems like this.Especially stairs are my enemy.
Do you prefer any site or exercise program for this situation.

[Vera W]

We have to spend the night in San Francisco and one time even though we asked for ground floor the only room available was up Very steep stairs. My arms are stronger then my legs so I pulled myself up while my husband pushed my butt. I ended up really hurting myself! The worst was I forgot to go in the handy capped bath room. I could not get up from the toliet seat. I decided to crawl to the handicapped and pull myself up with the rails. A lady came in and I was crawling around on that dirty floor and i asked her to go get my husband but at that moment he appeared because I was gone so long..so my dear you are not alone!!! i am glad I have a good sense of humor!! Just try to keep moving as much as you can, it will get better. Keep strong, V

[tserdogan]

Yess you understand my problem.I turn back my home to hospital around last 2 week after 7 months.And my home is at 4 th stairs and no elevator.All stairs are look at me and ask me what is the problem:)After entering the home i look my leg muscles and where was my muscles,i was shocked.Nearly half of my muscles had gone.My doctor said prednol and sandumine do this.He decreased to my sandumine level to 300 mg 150 mg at two week.Prednisol 32 mg daily.İf i get rid off or decreased prednisol,may be my muscles weakness passed away.
Now i listen to you and make some sweet exercises at home.
Bye,

[Laura]

I agree stairs are evil! I have started physical therapy and am working with them to increase my muscle strength. It is crazy how de-conditioned you can get.

I was told if I did not return by March 1st working full shifts no restrictions, I would lose my job. I am a little nervous to work full 12 hour shifts since I have been off work so long and am weak. I work as a pediatric nurse in a hospital. We are so busy that you run your butt off most days.

Laura

[Beryl]

Hi,
You look adorable!
take care,
Beryl

Mostly good news from my clinic appointment yesterday - the mixed bag being my CT results... Apparently some of the liver lesions have gone away, but others have come to take their place, so there's no net gain or loss. So now the doctors think that perhaps this is a drug reaction instead of an infection to be able to withstand 4 months of daily IV antifungal treatment like that. So the upshot is that they're switching me to oral Posaconazole but they're monitoring my liver function tests very closely and if they get worse, I may have to go back on the IVs after my next clinic appt in two weeks.

But in the meantime, they're extremely happy with me, I'm off the Folic Acid, too now, and I can go back to work finally!!!! :D And since they had to rip out my PICC line last weekend for the infection, when I go in for blood tests now, it's just fast-tracked through the phlebotomy dept instead of waiting around in HOP for hours (but even better news on that front is that the haematology dept at St Thomas's has FINALLY switched over to Guy's after over a year of delays so hopefully from Feb I can do my biweekly blood tests from there instead of making a big detour to Kings or StT before work in the mornings. Guy's is only a 15min walk from me and on the way to work anyway!).

And my fiance and I celebrated with dinner at a Greek restaurant last night. Mmmm.

Oh and my counts were awesome yesterday:
WBC 3.75
Hb 13.8
Pl 422
Neut 2.67

And I don't think I said earlier but I got my first haircut last week and switched over to my contact lenses for the first time in over a year (yayy yayy yayy) and the nurses at HOP completely didn't recognise me until I started talking. :)

http://www.fehrtrade.com/images/1674.jpg

It's weird having short hair after years of very long hair. Everyone says it suits me but I can't wait to grow it out as short hair is so much work, with the blowdrying and styling goo to make it stay put!!

[tserdogan]

Dear Laura and Vera W.
What did you do at this moment when your leg and arm muscles.Your doctors change your medication or only phsical therapy is great for improwing our muscles.Patience and waiting is only solution?
Serkan,

[Laura]

Serkan,
My doctors did not switch my medications. Instead I am working with physical therapy. It just is going to take time and patience to get back to where I was. Although, I have heard that most people don't always return to baseline. I do know that Prednisone can affect this. However, I am not currently taking this drug. Try to be more active. Take the stairs even though it sucks. It won't get better unless we do things that might take energy but that is how we can rebuild it.

Laura

[squirrellypoo]

Hmm. I don't want to sound like I'm bragging, but I haven't had any muscle weakness at all (only a day or so after coming out of the two long hosital stays and then back to normal). In fact, in the last week or so I've gone back to me pre-illness habit of running up flights up stairs rather than walking up.

I've been trying to determine what's different in my case, and the things I can think of are perhaps:
1. I was EXTREMELY physically fit pre-illness and didn't lose any weight in the transplant process so I'd think there'd be no muscle wastage (compared to someone who lost all their body fat and the body starts breaking down muscle)?
2. At home, in order to go from bedroom to toilet or bedroom to kitchen, I have to go up/down about ten steps (two sets of 5-6). Then it's about set of 5 to go out of the boat and about 100m to get to the road to be driven to hospital. So even at my worst, I was still walking and climbing a lot just to do the basics.
3. I was never on steroids and came off cyclosporin at 2 months post-transplant (don't know if it's relevant?)

But yeah, after an afternoon in the office last week, today's my first full day, and I walk to/from work which is about 30-35min walk (it's about 3km/2mi) each direction so I'm getting exercise there, too. I want to give myself a week or so to get used to that milage and the long workdays and then I'm going to start running again (I don't want to start working AND running at the same time and overdo it). Then you'll REALLY see a smile on my face!

(though Laura, even I wouldn't be able to do 12hr pediatric nurse shifts! omg that's so much more high energy than my desk job!!)

[Laura]

That is great that you haven't had any muscle weakness. I can't believe you run up stairs. That is crazy :) Just giving you a hard time. I think those reasons you presented are very good reasons why you don't have any muscle weakness.

Before I had transplant I did two rounds of ATG back to back and was constantly in the hospital. So for about the past 15 months or so I have been low on my activity, etc. I think that is what did it to me.

My nurse manager contacted me and told me she made a mistake and that if I was to return I would be given a different shift. So I would work 8 hours on the week and 12 hours on the weekend. So it is better but will still be hard. I wish I could start at 4 hours and work my way up. I also have to rotate between days and nights. 7a-330p and 11p-730a on weekdays. 7a-730p and 7p-730a on weekends. Some days we are so busy that we don't even get time to sit down let alone eat or go to the bathroom. Some days we are slower. So we will just see what happens.

How is work going? So glad to hear you are back and able to walk to and from work.

Laura

[Vera W]

Hi Melissa, I know that prednisone Really wreaks havoc with your muscles Be happy that you didn't have to use it. And you guys are like 25 to 30 years younger than I am...Not Fair!! HA HA:D

[squirrellypoo]

Another good appointment today. My liver function tests are getting slowly better so they're going to give me a further two weeks on the oral Poseconozole and reassess again. They're happy that my counts are stable within the normal range, so I only have to go in once a week for blood tests now, and he said they could probably reduce that further pretty soon. Hooray! I asked about shellfish and how long I'd have to avoid it, and he conceded that if it was really well cooked (ie: I'd do it myself from home) then it'd be ok, but to still stay away from soft cheese. We've got such a stockpile of lovely prawn, crab, and lobster stuff in the freezer for "when I can eat it again", it's going to be wonderful!

I asked about flying for my wedding reception & honeymoon in September and he said that shouldn't be a problem. He's happy for me to start running again and said I should get a dental checkup and enquire there about the stains left on my teeth from all the mouthwashes during the transplant (coffee coloured stains in between my front 5-6 teeth top and bottom. I'm hoping they'll come off with a professional cleaning but I doubt it). Oh and my lung function tests results were all good, even a couple of 100%s on my report card (as it were).

And then I had to wait around to see the dermatology consultant, who seemed genuinely disappointed that the spots all over my face are just bog standard acne and nothing more exciting, like, ooh flesh eating virus or leprosy or something. So I've got an additional antibiotic and gel for that. It just came out of the blue two weeks ago and is far worse than anything I had as a teenager. Trust them to make me feel young again, in the most unwelcome of ways! :p

So all in all, very good, and I'm happy to sleep in on Thursday instead of going for my counts.

[Neil Cuadra]

Good to hear your news, squirrellypoo.

One of our big days during my wife's recovery was when we could finally go out for sushi. So we know how you feel about the seafood that's waiting for you.

About the dentist: On the advice of her hematologist, my wife had prophylactic antibiotics before having her teeth cleaned the first few times.

[Laura]

Such great news! I am so happy for you.

Is work continuing to go well?
Laura

[squirrellypoo]

One of our big days during my wife's recovery was when we could finally go out for sushi. So we know how you feel about the seafood that's waiting for you.Oh, sushi will be another milestone! We've got the best family-owned Japanese place around the corner from ours. I've eaten at their several times post-transplant, but can't even look at the sushi and sashimi pages...

About the dentist: On the advice of her hematologist, my wife had prophylactic antibiotics before having her teeth cleaned the first few times.I'm already on a prophylactic dose of Azythromicin (and will be for life, I'm told) - do you mean she went on something additional specifically for the cleaning?

Is work continuing to go well?Yes, work is great - I did four full days last week (walking both ways, too), and am doing a full week this week, too. Getting up super early for my pre-clinic appt blood tests yesterday though has really thrown off my sleep schedule and made me really tired, though. My boss said I could either come back at 4 days a week or the full 5 (with the appropriate pay scale) so I'll need to decide by the end of the week what's best for me right now. The good news is, I've got lots of stuff to sink my teeth into with a big team project that's due in April. It feels really good to have a purpose again...

[Laura]

Wow. That is totally awesome. Glad to hear work is going well. I am still trying to figure out returning to work myself. My doctor does NOT want me returning full shifts. My nurse manager says I MUST return full shifts. UGHHH I am trying to figure it all out.

Laura

[Neil Cuadra]

I'm already on a prophylactic dose of Azythromicin (and will be for life, I'm told) - do you mean she went on something additional specifically for the cleaning?
Having teeth cleaned releases bacteria that could overwhelm a recovering immune system but you may already be adequately protected. It wouldn't hurt to ask in case any safeguards are warranted. My wife wasn't on other prophylactic antibiotics so the dentist had her take antibiotics both before and immediately after cleanings.

[Laura]

I am surprised they will keep you on that for life. I will have to take PCN and Acyclovir for a year post transplant. It is interesting how different places do different things.
Laura

[Vera W]

Hi Guys, Can't believe it has been 7 months!! Personally I am dying for some seared rare ahi. OMG Melissa I wish I had your energy. I feel alot stronger but I still need more stamina, I had a few outings. When I went to San Francisco for my appointment we met up with my best friend and went out to have some awesome Chinese food.This place serves mostly to go food and there was no one in there so we ate there. Dennis took me out to lunch and I helped him shop at Winco (LARGE WAREHOUSE STORE) and Costco. Wore my mask, I bought some of those N95 masks and they are so good that sometimes I feel like I am suffocating but I believe they are doing the job! Saturday my husband took me up to North Shore Lake Tahoe, it was a crystal Clear day, lots of snow, beautiful! Laura I would hate to see you jeopardize your health, I know you really like your job but maybe you should put your feelers out else where? As for me I put my sweats on and trundle down the hall way to the office. actually first I grab a cup of coffee and watch the weather report and Dr OZ. Dennis bought me a 32 inch flat screen tv for Christmas because he new that I would have days where I would just want to hangout in the bedroom. So I did some data entry, helped Dennis write checks for the business bills, and started my next series of deposits..the only downfall about working at home is the house work is always there. When I first got home I was really pushing myself I would get up early and have projects all day long, Dennis would tell me to go rest and I told him I had to keep going. I am very driven and I had a feeling that I needed to accomplish everything NOW, it is hard to describe, like life would pass me by if I didn't keep up. Does that make any sense? Finally I have learned to relax and let things come as they may and now I am laying in bed writing to you!!

[Neil Cuadra]

Dennis bought me a 32 inch flat screen tv for Christmas because he new that I would have days where I would just want to hangout in the bedroom.
We got a new TV for the same reason -- a lot of time stuck at home. And when my wife could go out we'd go to movies. She didn't have the energy for anything more strenuous.

As you say, you have to learn to relax and that's true for us caregivers too. It's good for you!

[squirrellypoo]

oh Vera, I completely know what you mean about being driven! I have a really hard time relaxing - every time I sit down I think of things that need doing...

But I have a big milestone to share - I went running for the first time this afternoon and it felt GREAT! I set low expectations and exceeded them - I ended up crossing over Southwark Bridge for about a 4.5km trip, but it was a very slow slog at ~30min. That's including a minute or two wait while the Beefeaters and Met Police held everybody back at the Tower for the cannons(!!) and military personnel to drive out the gate. Don't see that every day...

I know this'll sound funny contrasted with the above, but I've spoken to my boss and I'm going to start out at 4 days a week at the office because the full 5 these last two weeks was wiping me out physically and mentally and I was a zombie by the time I got home. So he's happy to let me be flexible and take Mondays when I have HOP appts and Wednesday when I don't (to have a break in the middle of the week) and come back to the full week when I'm ready. I've been really sinking my teeth into the big project now and using my brain again is refreshing.

A good side effect of walking to and from work (the bus is a pain, just as much effort, and way too crowded), is that the 6km/4mi round trip has taken off a few kg even in the last two weeks! So the scale says I'm only 3kg up now on where I was before I got sick, even though the inches are higher (I need to get back to lifting weights to lose some fat and put muscle back on, which is where the discrepancy lies). Clothes that I couldn't close at Christmas now fit nicely. :) I'm going to wait until payday to ring up my gym and have them reinstate my membership, though (they very kindly halted it after receiving a letter from my consultant so I don't have to pay reactivation fees). It's a nice perk of being a long-time member of the council-owned gym (a bit like the YMCA in the States, I'd say). I think the free weights will really make a difference to my strength and stamina again.

[squirrellypoo]

Another good clinic appointment today - all bloods were in the normal range and I had a record high for haemoglobin again (14.2!). They're still cautious about my super high liver function tests but think my immune system might be strong enough now to deal with whatever's there without the antifungals getting in the way, so they're booking me in for another liver CT scan in a few weeks.

But the liver stuff is just numbers on paper, I feel just fine. Still working 4 days a week, still very happy to be running, and my skin GvH is getting better, though this horrible acne is staying firmly put. I have a gynae appointment in April so I'm really hoping they can clear it up then, as the dermatologists are almost certain it's related to my polycystic ovaries (only diagnosed when I went through IVF to freeze embryos pre-transplant).

But some really awful news this weekend from my Welsh friend David who also had his transplant last summer and whom I always count in our circle as "one of us summer transplantees". His lymphoma is back, and it's terminal. They're both younger than me (in their 20s), and been married only since Oct after years of long distance relationship and visa battles and now they won't even have a full year together. The news and her outlook on it all has just broken my heart. It just doesn't seem fair that I got all the Good and he got all the Bad. Please, please keep him and his family in your thoughts for the little time he's got left.

[Neil Cuadra]

Keep up the good work, squirrellypoo. And keep running!

We're sorry to hear about your friend David.

[squirrellypoo]

My 31st birthday was last week (hmm, guess I'd better change my sig now) and it's all been really good and positive to throw away the old crummy year and start with a new fresh year just as the buds and flowers are emerging and the sun is peeking out.

I had a clinic appt today following last week's CT scan and the result there is that the lesion in my liver is still there, but my liver function tests are all still trending downwards. So even though they're all above normal, they're going in the right direction so they're taking me off the Posaconazole (anti fungal) entirely since my counts are so good and they suspect the lesions might be a drug reaction anyway.

My counts were:
WBC: 6.something
Hb: 13.8
Pl: 288
Neutrophils: 5.something

(no printout today so these are from memory)

...which make me really happy! And they're happy enough to let me only going in for blood tests once a fortnight now instead of weekly, and in a month or two when they can see my liver function without the antifungal, he said I might gown down to monthly (and have a drink again), which would be nice.

Another thing is that I'm involved in a study looking at whether the rehabilitation of transplant patients can be helped by life coaching, so I'm pretty excited to start my first session with the coach on Wednesday. I'm a pretty organised person anyway but I've got a lot going on this year and I think I can really benefit from someone else helping me to realise what I really want and setting goals to get there.

[Julianna]

I found your posts and had a bit of a read! Just read a little. Feeling a bit overwhelmed myself with what's going on for me at the moment.

So glad your counts were so great the other day! Sounds really positive.... And it's nice to be in touch with someone that is so positive about the future too. Life coaching sounds interesting. Like to hear more about that! Hope it is refreshing for you.

Jules

[Laura]

What great counts you have. But one question. What does a fortnight mean? How is work and running going? Happy Birthday!

[Chirley]

Hi Laura, don' t Americans use fortnight? It's just another name for a 2 week period. I have to admit when I look at the word objectively it does look very old fashioned.

[squirrellypoo]

oh sorry about the fortnight thing, yeah it's two weeks. It's been ten years since I lived in America and sometimes my internal US/UK translator gets broken. ;)

Laura, work and running are going really well. Still doing 4 days a week in the office with a break on Wednesdays, but I'm thinking about going full time in May (bit of a cheeky reason, but May has two bank holidays, so I'd be getting full pay for doing 2 4-day weeks and 2 5-day weeks!). How are you coping with the 8 hour shifts? I can't even imagine how exhausted you must be after being on your feet for that long!!

I had to take a couple weeks off running since I picked up a cold that left me really super tired, but I've been feeling better over the past week so I went out for a run on Saturday, and when I got to the bridge I had been crossing over (I run up one side of the Thames, cross over a bridge, run back down the other side, then cross over Tower Bridge to home, so I can change up how far I go based on which bridge I cross) I didn't feel halfway done so I went one bridge further down to cross. I had a couple points when I had to walk, but those were really only for 10 or 20 seconds before I felt fine again. All in all, I did just over 5km (3mi) at what was a leisurely pace for me but ended up not being too bad, considering - 33min. At my fastest I did 5km in 24min but that was when I was healthy, after weeks of training, and in a race where I didn't have to dart in and out of pedestrians so I was really happy with that!

I'm looking forward to the long 4 day weekend coming up. Maybe I can get a run in on Friday and Monday since I don't have to save any energy for work (why I'm not running on any days I'm working - I'd be asleep at my desk by 2pm in my current state!!). The other two days will be nice and leisurely, maybe some gardening (I've been given the all-clear to play in the dirt again, yay!) and sewing. I'm starting on my bridesmaid's dresses so I've got plenty to keep me busy.

[Laura]

Wow, things sure sound like they are going great! I am so happy to hear that.

Work is going well too, but I am very tired most of the time I am not at work. I either go to bed right when I get home or I force myself to stay up until 8 and go to bed then. On my days off I sleep like crazy. Although, I do really enjoy being back at work.

I have my appointment with labs today, so I hope that goes well.

Laura

[squirrellypoo]

Ugh, not a great Easter emotionally. My fellow summer transplant friend, David, passed away yesterday at 11am. His widow (god, she's far far too young to be a widow) texted me to tell me the news and handle some immigration research for her, which isn't looking grea for hert. Because of a weird quirk in timing, there's a high chance she may have to leave the country in 28 days, or at best, hire an immigration lawyer to fight her corner, which just isn't what the poor girl needs right now.

So after helping her out all day, I found out last night that the neighbour's very, very loved cat that went missing three weeks ago was found dead. He was so full of personality and was utterly best friends with our cat (they'd play hide & seek and leapfrog together it was TOO cute), and as much a part of the family to his family as our cat is to us, and I just know how broken up they are about it.

So not a good Easter, all told. It was good to wake up early and get a run in this morning to get some of the stress out. The only good thing I've got to report is that this week is the first week in about 18 months (since my diagnosis, anyway) that I won't have to go to hospital at all. Not once! So that's a nice feeling.

[Neil Cuadra]

squirrellypoo,

Life sure has a lot of ups and downs, doesn't it?

You said David and his wife were in their 20s. What a shame. She must be in shock. I'm sorry to hear that your cat lost a friend too.

Here in Los Angeles we had an earthquake yesterday. The epicenter was in northern Mexico, over 200 miles from us, but it was 7.2 on the Richter scale and we felt it here. It triggered some aftershocks near us. Those weren't the kind of ups and downs I was referring to, but they are part of life on the U.S. west coast.

[squirrellypoo]

Thanks, Neil.

I suppose in your case life has been going side to side a bit too much as well! I'm glad you're okay, I've never been in an earthquake - thunderstorms are about the fiercest natural phenomenon we get on this little island (though I remember being terrified by tornadoes growing up in Pennsylvania).

[Laura]

I am so sorry to hear about the loss of your friend. That does make for a hard holiday. Best wishes and thoughts to you.
Laura

[squirrellypoo]

Boring is good, right? I happened to get Prof Marsh today for my clinic appointment and I joked with her that I didn't think I was interesting enough to see her these days. ;)

Not much to report, other than that my chimerism tests came back from last month and all the DNA tests show I'm still 100% donor so that's good. Bloods were all normal again: WBC 5-something, Hb 14.1, Platelets 329, Neutr 4-something.

I'm just waiting to the gynae/endocrine specialist on the 22nd now, really, as everything left going on is allllllllllll his (wait til he asks "what's up?" and gets a laundry list as long as my arm!)

That, and I noticed my favourite nurse from St Thomas's has now transferred to Kings so that's nice. Since I switched to Kings the month before the transplant I'd missed our swapping band recommendations. :p

[Neil Cuadra]

Boring is good, right? I happened to get Prof Marsh today for my clinic appointment and I joked with her that I didn't think I was interesting enough to see her these days. ;)
squirrellypoo,

Yes, it's great to be a boring patient. For a while my wife was one of the more interesting cases at the hospital, often a subject of discussion at hematology staff meetings. We appreciated the combined expertise that went into her care but we were much happier when she turned boring. These days her hematologist looks at her counts at a checkup and says "ok, that's it, see you next time!"

[squirrellypoo]

I finally had the gynae/endocrine appointment yesterday I've been waiting months for! I'm not comfortable going into too many details, but the doctor said he doesn't think my ovaries are dead, just "stumbling to wake up". He can easily fix my acne and sexual problems with a pill I was on prior to my blood issues, but it affects the liver so he has to clear it with Haematology first (I see them on Monday).

He is also pretty sure that I will be able to conceive naturally when we want to start a family in the next year or few, which is a big surprise!! He took some extra blood tests just to be sure, but looking at my LH and FSH levels, he feels I am definitely pre-menopausal (despite not having any periods post-transplant). He put this down to my 1) not having Total Body Irradiation and 2) having a lesser dose of chemo in my "mini transplant" conditioning regime.

I'm still very glad we froze embryos before my transplant as it's a relief even now to know we have a backup plan, but with my specific transplant and age, I still feel incredibly lucky! And knowing that he can fix my rather long list of problems with a pill I'm already familiar with is a big relief, too.

Have a glorious weekend everyone, and I hope that the weather is as nice and sunny where you are as it is in London.

[Laura]

Hey Melissa,

I am glad they don't foresee you can't have kids. I am going to see one too as I feel some things are off as well. However, I did have TBI and I feel like that is ALREADY affecting me in this area. So I asked for a visit to get his opinion. It is just a bummer to think that I probably can't have kids after all this. Hoping for some good news at my apt.

Laura

[squirrellypoo]

Fingers crossed, Laura. Do you know when your gynae appointment is yet? I'm so happy to have started my pill today, even though they all (gynae, haemo & dermo) say it may take a few months to make any change, it's good knowing that I'm moving in the right direction and not just standing still.

They also took a bunch of hormonal blood tests on Thursday but the haematology dr I had today didn't want to venture what the results meant as she's not familiar with gynaecology and didn't want to give me misinformation. So I suppose I won't know any more on the fertility side of things until I see the gynae dr (he specialises in younger women who've had chemo and radiation) again in June.

If you want to know my specific problems or compare notes, I'm happy to tell you in a PM, just not all out in public like this.

[Laura]

Melissa, See my PM. Laura

[Julianna]

Hey Chickees! Just thought I'd like to let you know that I'm so interested in your journey's through transplant. I have been reading your posts, but I don't comment very much... so I thought I would pop in to say I am here too! :)

Thanks for your very important info sharing. I'm not sure if transplant is my future but we are looking into it, with my unusual cytogenics. I have an appointment with my Hemo and BMT Dr on the 14th of May to talk about it.

But I guess for now I will just keep reading here... especially Jill's journey at the moment. Go girl! Hope you gals are doing ok and remaining well at the moment. Enjoy the weekend...

Jules

[Laura]

Hi Jules,
Welcome :) Thanks for posting. Do you think your doctor is leaning towards transplant because of the switch to MDS? What is your current plan? Tell us a little about you and such if you wish. Also let us know how your appointment goes! Laura P.S. You might just have to start your own thread too :)

[Julianna]

Hey Laura... I have a thread in My Story called Julie's Adventure. And all I know is that because I am 34, and had treatment for AA over 10 years ago, they are wanting to watch me closely, and be prepared for transplant in the future. I have a few chromosome abnormalities... which might be from my former treatment. Watching and waiting is what they're suggesting at the moment. And it's a lot harder to do than I thought! But I'm just rolling with it. Have a great week. :)

P.S. My last platelet count was 34! So a bit of an improvement... but amazingly still leaves me feeling unerved about it all. :rolleyes:

[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. :cool: 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! :D

[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. :D

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 (http://www.teasmith.co.uk/) 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

[squirrellypoo]

oh my counts are fine. They don't even bother to tell me the details these days (and I never think to ask) - I only see them when I get the letters CCed to my GP. It's kinda nice how no one's really worrying about those anymore.

[mausmish]

So happy to hear you're finally feeling better!

[Laura]

Don't you have withdrawls wondering what they are? Ha! J/K. I am slowly getting used to not always knowing what my labs are. But it is weird.

Laura

[mausmish]

I was panicked when the oncology nurse suggested labs only once a month instead of the usual weekly. We compromised at biweekly, lol. I keep a spreadsheet of the main counts. Of course, my husband and I are both math geeks and like our numbers. I hate to think how we'll be after the transplant!

[rose mcmillin]

oh my counts are fine. They don't even bother to tell me the details these days (and I never think to ask) - I only see them when I get the letters CCed to my GP. It's kinda nice how no one's really worrying about those anymore.

So glad to hear about your counts. Been really enjoying your posts and love the dress details. You have a cute way about yourself that makes me smile. I have fond memories of England from when I was a teen. You remind me of those treasured thoughts. Good luck to you in all of your endeavors. Keep that positive spirit and thanks so much for sharing so much of yourself with all of us. Mostly, be happy. Sincerely, Rose

[Laura]

Oh hey Melissa, the countdown must beginning for your wedding? Almost here! You all ready?

Laura

[squirrellypoo]

5 weeks to go, aaaahhhhhh! So much still to be done! The dress is coming along nicely, but that's because it's one of the few things that's entirely under my control! The rest, not so much...

(18 September, since it's not specified in my sig!)

[squirrellypoo]

I had a checkup HOP appointment this morning. All my bloods are in the normal range as per usual, and nearly all my liver results are normal again (and the two that were high are only *just* above the cutoff, so that'll make my bridesmaids happy for hen night drinking!).

I saw Prof Marsh today and she said they're reviewing how they deal with post-transplant milestones, which is why I hadn't heard anything about my one-year additional checks. But she said I didn't need another lung function test since I just had one 6 months ago and haven't had any lung issues, and she said a bone density scan could either come now or at two years post-BMT so it was no rush and I should ask the gynae/endocrine consultant on Thursday to see if he wants one done. I'm getting my first lot of vaccinations after I come back from the honeymoon in October, though, so that'll make me feel safer. We're only going to NYC so it's not like it's anywhere tropical that I'd need extra precautions in advance of!

Four weeks to go til the wedding. I am officially entering the STRESS ZONE. blarugggghhh!

[Laura]

Interesting. You will have to let us know how they change around the milestone tests or whatever.

Glad to hear things are going well.

Can't believe your wedding is so soon. Best of luck with getting all the last minute details ready!!

Laura

[Neil Cuadra]

Four weeks to go til the wedding. I am officially entering the STRESS ZONE. blarugggghhh!
There's only one safe and effective cure for pre-wedding stress... a wedding! :)

[squirrellypoo]

Grrr. The dermatologist was convinced that 6 weeks on Isotretonoin (accutane) would clear up my face of all this horrible post-transplant hormonal acne.

It hasn't. It's just made my skin peel off in rather large chunks, leaving big red marks that look worse than the acne. Plus half the acne is still there, AND the corners of my lips have cracked so bad they split when I open my mouth to eat anything. I'm putting on e45 and Savlon constantly but it's just not doing much. I see the dermatologist again on Monday, but I'm getting very anxious and depressed that my face is going to look like it's got leprosy for all my wedding photos and I don't know that there's enough time to back out of it now for it to recover. :( :(

And my visit with the gynae/endocrine consultant two weeks ago was truly depressing. For eight months now he's done absolutely nothing, and keeps saying "oh you want it fixed so quickly, these things take time, just keep waiting and it'll fix itself". Uh, so it hasn't fixed itself in eight months, when on earth do you think anything is going to change?? It's like that quote "I've tried nothing and I'm all out of ideas!". And then I found out why - he's retiring next month. So he clearly just hasn't cared what happens to me because he's leaving anyway. And I have to wait another four months now to see his successor. Before he said he was retiring I was prepared to get a second opinion anyway because he's been so useless.

Wedding stress is not helping any of this, either. No one ever warned me that the transplant might screw up my hormones so badly that I wouldn't be able to have any sex life whatsoever post-transplant (and until when? who knows!). You can't get a second chance at your wedding night, or your honeymoon, and I'm almost in tears at how this crappy gynae/endocrine doctor has failed to help me at all. At least the dermo is trying!

[Debbie W]

This will still be happy time for you, but I'm sorry to hear you are going through all these extra problems. As you say a wedding is stressful enough, maybe plan now for another special evening on your first anniversary. I know this is easy for me to say and I can feel your pain with the words you have written. It also comes through that you are loved by many, so hold onto that thought and make the most of your honeymoon.

My very best wishes for your wedding and honeymoon,
Debbie

[Laura]

Melissa,

See PM.

Laura

[starz]

Dear Melissa,
Have a lovely wedding, and just take everything in so you can remember it all. I hope the problems you are having can be solved soon, but dont worry too much as you can always have a 'wedding night' later, and make it special! The actual day is more difficult to repeat.
All the best for the big day
Gem

[Laura]

Melissa 4 days until your wedding! I hope everything is coming together just fine. I am thinking of you. I hope some of your issues are also resolving. Congrats and best wishes. You deserve the best!

Laura

[squirrellypoo]

Thanks guys!! My face is looking a million percent better. The dermo is awesome - like 2 days after she pulled me off the Isotretonoin/Accutane, the flakiness and scabs disappeared so I'm only left with a few spots now, and I can cover those well enough with makeup.

Gynae issues are still there (surprise! They don't clear up on their own, grrrr) but I'm trying to push that out of my mind until after my honeymoon when I'll go on the warpath and get my followup appt pushed up.

I finished the last remaining detail on my dress and the bridesmaids's dresses (yep, I made them too) last night so it's now just printed stuff and the last few stitches on my fascinator to go. I'm booked in for a mani/pedi tonight. I've never had either before in my life, can you believe it?? I also saw the dentist last week and got the last of the transplant stains off my teeth and had a cap put on a baby tooth that never left me so my smile is even now. It hardly cost anything and required no drilling or novocaine so I don't know why I didn't do it years ago!!

[Neil Cuadra]

I finished the last remaining detail on my dress and the bridesmaids's dresses (yep, I made them too) last night so it's now just printed stuff and the last few stitches on my fascinator to go.
squirrellypoo,

I'm used to running into words in these forums that I have to look up, but I'm afraid I don't know what "fascinator" means. :o

Will you have something old, something new, something borrowed, and something blue?

[mausmish]

Melissa,

Best wishes on your wedding day! I'm really impressed that you made all the dresses, too. I'm all thumbs when it comes to sewing. You should treat yourself often to the mani and pedi--the pampering is great (I especially love the pedicures).

Neil, I don't know what a fascinator is either!

Karen

[Laura]

Wow I can't believe you made all the dresses. You will have to post some pictures when you have time after the honeymoon!

I don't know what it means either!!

Laura

[squirrellypoo]

Fascinators are like small hats, either attached by a comb or headband, that often have netting or feathers attached. They're very popular in the UK and Australia when wearing formal clothes.

http://en.wikipedia.org/wiki/Fascinator

[Debbie W]

Happy Wedding Day!!!

Hopefully you are fast asleep and that today will go smoothly, enjoy the moment.

The very best of wishes to you and your lucky fellow on this special day,
Debbie

[m mindas]

Woohoo! Show off those pearly whites, Girl!
Love & Happiness!! :)

[tserdogan]

Big day start for you Melissa,i hope everything will be fine for you.
Best wishes:)

[Laura]

Hey how was the wedding? How are you?

Laura

[squirrellypoo]

Sorry for the lack of updates! We only got back from our honeymoon last week and already I've been flown out to Dublin for work so things have been CRAZY busy.

The wedding was BRILLIANT, awesome, fun, wonderful - everything it should be! ;D

I've posted up a few comparison photos between my granny and the original gown and me in mine up on fehrtrade.com (http://www.fehrtrade.com), but I'm doing a whole series of posts on everything we DIYed at our wedding (dresses, flowers, makeup, printed materials, cakes, music, etc) so there will be WAY more photos up over the next week or so (Including some truly stunning ones from our professional photographer!)

Here's one:
http://www.fehrtrade.com/images/2326.jpg

(For more... (http://www.fehrtrade.com/gallery/381/our-diy-wedding-refashioning-my-grandmothers-gown))