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-   -   And we have a date (http://forums.marrowforums.org/showthread.php?t=4041)

DanL Fri Jan 24, 2014 01:03 PM

And we have a date
 
All of my pre-transplant testing is complete, everything looks pretty good, and I will be checking into the hospital February 12th, starting treatment on the 13th, receiving my generous donor's cells on 2/20.

We will be doing Bu/CY conditioning, rATG, Methotrexate and Tacrolimus as GVHD prophylaxis.

it has been nearly 4 years in the making, but here we are!

Relentless Against SAA Fri Jan 24, 2014 01:41 PM

I wish you the best!

Whizbang Fri Jan 24, 2014 02:29 PM

Best of luck Dan...

The Hospital will be a blur, the days before the transplant will fly, and the days after will soon be a memory...

I just went in for my BMT/SCT... and here I am at D+85...

You will be on our minds...

God Bless!!!

Neil Cuadra Fri Jan 24, 2014 02:31 PM

Good luck to you and your wife, Dan.

Have they estimated your inpatient time?

Bhutt Fri Jan 24, 2014 05:14 PM

Good luck Dan. It's 7 months for me.

Blair

Kathy S Fri Jan 24, 2014 06:05 PM

All the best to you Dan. Everyone here will be following your progress.

Kathy

DanL Fri Jan 24, 2014 08:31 PM

Thank you all for the well wishes, I accept them all indiscriminately given what I am about to face.

Neil, the team estimates about 25 to 30 days, the insurance estimates a maximum of 35 days. I am planning on the longer end of the range, but hopeful it will be sooner. The doctor says that most people are out by day +20, which would be 27 days total.

DebS Fri Jan 24, 2014 08:39 PM

Best of luck to you, Dan.

Post when you can and listen to the doctors!

God bless!

Deb

vickij Sat Jan 25, 2014 09:54 AM

You will be in my prayers Dan.
 
I had my transplant 7 mo. ago and was in the hospital 22 days.

Diver down Sat Jan 25, 2014 12:04 PM

You will be in my thoughts and prayers. Wishing a speedy engraftment!!

Wife of Diver Down

dfantle Sat Jan 25, 2014 03:55 PM

Best wishes Dan.

I agree with Deb's comment, listen to your Dr's ( & nurses). Also, ask as many questions as you like.

You'll look back when you reach each milestone and relish how far you've come. My 1 year is Jan 29 & it really has gone by fast.

mausmish Sat Jan 25, 2014 05:09 PM

Congratulations, Dan! A scary and exciting time for you. Please keep us updated when you can. Wishing you all the best. Karen

Cheryl C Sun Jan 26, 2014 05:54 PM

A big decision, DanL. You will be included in my prayers for all transplant patients.

DanL Tue Feb 18, 2014 09:20 PM

Had a slight delay in admissions to the hospital - had to have 4 wisdom teeth and 4 molars pulled - ouch - literally and figuratively. Checked into the hospital today, will receive a little more blood and begin round the clock busulfan tomorrow through Saturday.

bailie Tue Feb 18, 2014 11:22 PM

Be well Dan! I'll be right behind you in a couple of months.

Whizbang Wed Feb 19, 2014 10:26 AM

Again, Best of Luck...

May God Bless...

MaryS Wed Feb 19, 2014 11:40 AM

God Speed!!!! Amen
 
Dan you will do excellent ` Positive thoughts coming your way. Remember when s itting in your bed to take deep breaths and exhalations a few times a day. Fill those lungs with oxygen.( this is the nurse speaking in me).

May God work his miracle in you Dan!

Mary S

DanL Sat Mar 1, 2014 08:37 PM

So we are past all of the conditioning, received cells on 02/26 from a generous anonymous donor. I have received a total of 3 PRBC transfusions and 4 platelet transfusions - holding steady today with 48k platelets and 8.6 HGB, ANC have come down and now are at 1172, should drop below the 1k mark today to become neutropenic. I am feeling pretty good on the scale of things, and cannot begin to tell you how wonderful the nursing and medical staff are here. These folks are the very best I could ask for.

We are working on adjusting Tacrolimus levels, I keep showing up a little high - was 18 the other day, target of 12, was 15 this morning. We think the dose is right, but that my body is just trying to catch up a little.

It has been pretty nice being able to get up and about daily to take walks and ride the stationary bike - walked almost 2 miles today.

I also wanted to express gratitude to all on this forum as I have learned from the transplant experiences of you and your loved ones, which has helped me prepare for some of the stuff that has come up so that they are seen as obstacles not road blocks.

Wishing all of you well.

Diver down Sun Mar 2, 2014 03:00 PM

Glad to hear you are doing so well!!! Feeling pretty good here except profound fatigue. Still no nadir- Admission WBC 1.1; Now WBC on Day +8 = 0.7;
Jumped to 4.7 D+3 Attributed to Neupogen. Are you also receiving Neupogen ?

DanL Sun Mar 2, 2014 05:01 PM

I am not receiving neupogen currently and have not heard any talk of doing so, but that probably doesn't mean much. There are so many regimens that are being administered just in my little wing of 10 people. My neutrophils did drop further last night, down to 490…almost there. Woke up pretty tired even even after 9 hours of sleep.

I asked do neutrophils always get to zero or really close, and the response was, don't worry, they will be there soon enough.

My level of fatigue is also pretty high, even compared to what I came in expecting.

Hang in there!

slip up 2 Mon Mar 3, 2014 11:32 PM

Dan....to you & your family .....all the best....
kate

DanL Thu Mar 6, 2014 12:15 AM

neutropenic fever? - possibly
 
Had my first fever of the adventure tonight. Started 99.6, then 100.6, then 102.3 within about an hour. Blood cultures and cefapine (broad spectrum antibiotic) in addition to my normal voriconazole, actigol, levaquin, acyclovir, clindamycin….

Feel a little like a drama queen, but i really want to be on top of infections since I am at day +7 and have and of .49. after about 2 hours of rising temps, fever breaks (no sweat) and back down to 99.

Another day in the transplant unit eh?

Heather8773 Thu Mar 6, 2014 01:52 AM

Dan
When my husband started getting fevers at night it was right before engraftment ;) although his wasn't as high as yours it seemed to always break on its own.. Glad they seem to be diligent in testing and watching!!

bailie Sat Mar 8, 2014 11:11 AM

Dan, just checking in, how is the fever? Did you/they get it under control fairly quickly? How is the energy level now? I am guessing this is a tough week and you have not been wanting to get on a computer. Stay strong, be well.

DanL Sat Mar 8, 2014 06:25 PM

Bailie, I was given Cefepime(sp?) which seems to have knocked out the fever quite well after 2 doses. I am on dose 4, no fevers since that time. As it turns out I had some form of bacterial infection. They have not yet identified what it was, but there was some creature growing on the blood culture.

Feeling good today and yesterday. ANC have hit their lowest point at 18 today, still waiting for zero and then engraftment. Protocol at this place seems to be wait until day 13 for Neupogen if needed. I am only at day 10.


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