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!!!! 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.



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 problemAfter 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

Originally Posted by 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!!!! 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.



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

[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!

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]

Originally Posted by Neil Cuadra

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...

Originally Posted by Neil Cuadra

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?

Originally Posted by Laura

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]

Originally Posted by squirrellypoo

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.