New date and donor for Transplant
 

Saw the transplant dr. on Friday. He wants to do the transplant on 1/28. They found 2 new donors which are both young males and 8/8 matches. I am happy and scared. I am not in my best health and still trying to gain weight after my colostomy surgery. I get why he wants to do the transplant now though- before my zero neutrophils cause me to get any other infections.

I am also finally off all IV meds and only on 1 oral med for the lung fungal infection. So hoping I will get stronger and gain at least a few pounds.

Tracey

Tracey,

You've got a whole month to gain strength and stay out of trouble. I hope it goes well.

Do you know what kind of pre-conditioning you'll get, and when they want you to check into the hospital?

Best of Luck
 

Tracey,
Best of luck to you!! I can understand your being "happy and scared"! I am so anxious for a date for my transplant but scared at the same time. Again, I wish you best of luck!!!!


Data

Thanks Neil - I know it's Bulsafan and I can't recall the other chemo drug. I am waiting for a schedule, but I know they want me in the hospital for the pre-conditioning, so probably a week before.

Hi Data- Thanks. I hope they get you going soon. I was actually surprised that he wanted to do it so soon since my oncologist had been talking about starting Vidaza again.

Hi Tracey. I understand how you feel, I was sort of the same way. In my instance however, I only had PNH and no other significant health issues going into my transplant. I was just weak and tired beyond belief. (Healthy people w/out health problems don't always realize how lucky they are.) I had a lot of tests and dr appts before my transplant, and after, so I understand what you are going through and how hectic it can be. Trust in your doctors and their advice, be positive, and you will do fine.

Mario

Hi Tracey - I've tried responding to your post a couple of times only to have it disappear right when I was about to post - so don't think I haven't been thinking of you!

Great news you've got a date and a donor - I totally understand how you feel - in some ways its very scary news - but stay positive - remember you are a bad ass mother and will do well - you've already been through so much - whats a little stem cell transplant?

Use this month to relax, take care of yourself, try and build up strength - go to restaurants and be with friends and family. I've found - and everyone has told me - that a positive attitude is the key - you will overcome the bumps in the road and you will get stronger and stronger after the transplant.

You will be getting a second chance at life thanks to a complete stranger - that's pretty awesome. You are in my thoughts and prayers -

Best,
Paul

Thanks for your encouragement Mario and Paul. I am going to spend as much time as possible with my family, especially since City Of Hope is an hour away and they won't be able to visit that much. We do have and education session there too, which hopefully will finally make my husband see how much help I will need when I come home and how clean the house needs to be.

I knew being out of the hospital for Christmas was too good to be true. I was admitted on Tuesday night for Neutropenic fever and chills. Of course the cultures didn't grow anything, so they are just guessing it was in my gut even though I had no pain. I just got out today.

While I was there I had to get a pint of blood and 2 pints of platelets because my levels were so low. The nurses were all happy telling me my wbc was going up from 1.5 or so to now 7.1. Unfortunately the neutrophils are not rising as well, so now I am really worried that the white blood cells are destroying the red cells and platelets.

I have my prelim tests the week after New Years including another bmb. I almost don't want to know those results because I am afraid it will scare me more.

Thanks for everyone's support and encouragement.

Paul - How are you doing?

Hospitals and Christmas
 

Tracey,
Sorry one of your Christmas presents was a hospital room. That is worse than a lump of coal. I did that one year a few years back for a perforated ulcer.

Good luck in your prelim tests!!!

Happy New Year

Data

Haha! Thanks Data for making me chuckle. Yikes- a perforated ulcer. That sounds painful.

Thank you! Any word yet on a date for your transplant?

Happy New Year to you too. I will just be happy if I am at home for New Years and not in the hospital!

I wish you the best Tracey !! You will be joining a select club. Remember, we are here to help.

Tracey,
Glad I made you chuckle. Sometimes I think humor is my best defense against MDS. Sometimes people think my humor is a bit morbid but it helps me get through the day.

Is the 28th the actual day of the transplant or the day you will be admitted? I put it on my calendar to remind me to be think of you and wishing you well.

No updates on my status. The last I heard was the transplant coordinator e-mailed me and said they had "lots of matches and were requesting confirmatory typing on several". I think after the first of the year I am going to call her or my doc and get a status update.

Best of luck!!!

Data

Thank you Bailie. This board has been so supportive over the last few months for me.

Data - They changed the date to the 27th for the actual stem cell transplant. Not sure about the hospital admission date because the dr. and I agreed I should have in hospital chemo because of my bad reaction to Vidaza, but his nurse has me having outpatient chemo starting on the 18th. I emailed her to tell her to ask the dr about it. So right now it looks like the admit date might be the 18th. Yes, definitely call the coordinator to see if they have any confirmations. I will be saying prayers for you to get the best match possible.