Bone Marrow Transplant anyone???

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Preachers wife
Regular Member


Date Joined Jan 2006
Total Posts : 155
   Posted 8/27/2008 2:01 PM (GMT -7)   
The Dr's are now considering sending me to Chicago to undergo a Bone Marrow transplant to try to "KILL" the Crohns disease, and give me a new immune system.  Has anyone done this or have been talked to about this.  So many details leading up to this, I am just to tired to list them all right now.
 
Homesick Preachers Wife
" I CAN do all things through CHRIST which strengtheneth me."
 
Laughter helps with the pain, I promise.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/27/2008 4:23 PM (GMT -7)   
pw, did they mean a BMT, Prochymal or RevImmune?

If it's a bmt they're considering, I'd be happy to talk to you about it. I was my mother's carer when she had one for cancer a few years ago, so have seen a lot of it.

Be warned that this is a HARD, procedure, probably one of the hardest things you will ever endure. My guess is that you must be incredibly sick at the moment, or else they wouldn't even be considering it. I'm so sorry.

*hug*

Not writing more now, as the server keeps losing my posts, but please let me know if you want to hear more.

I.
Co-Moderator Crohn's Forum.


Preachers wife
Regular Member


Date Joined Jan 2006
Total Posts : 155
   Posted 8/28/2008 7:38 PM (GMT -7)   
Ivy6, I would like to hear more. Right now they have only mentioned it to me. They say there is a Dr. in Chicago doing Bone Marrow Transplants on very few patients, and that I might be a candidate for this trial. Things are not well with me right now at all, And right now they are talking about sending me back to the Cleveland Clinic for more surgery with Dr. Fazio. The surgeons are wanting me there "NOW" according to them. But the "Medicine" Dr's are still debating on this decision. They want what is best for me, and right now they just don't know how to precede. Any info you have on this is greatly appreciated. We have also talked about intestinal transplants, but the Dr's say best chance with that is about 5 years. Then more complications. So we are waiting and praying for the right decision.

Preachers Wife
" I CAN do all things through CHRIST which strengtheneth me."
 
Laughter helps with the pain, I promise.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/28/2008 7:57 PM (GMT -7)   
Wow. What symptoms are you having right now, pw?

It's about eight years since I've seen the bmt so my memory is fuzzy, and a few things might have changed since then, but here's what I remember:

1. Make sure you get a tour of the bmt ward before you commit to the transplant. Ask them to be totally frank and honest with you, so you know exactly what you're in for and can be better prepared.

2. Once you've commited, you'll have a lot of infusions, some for heavy chemo, and some (as far as I remember) to encourage your stem cells to multiply. I think you'll only get this second infusion if you are providing your own cells for the transplant. The procedure may be different if you're getting someone else's.

3. You'll then have a cannula inserted and will hooked up to a machine that will filter your blood. Your blood runs out of you through a tube, through the machine, and then back into you, with the stem cells removed. These will be stored until they are reinfused into you.

4. Eventually you'll be admitted to the ward and you'll start getting incredibly heavy chemo. For a while you'll be allowed into public areas of the ward, but as you become more immunosuppressed, you'll be confined to your own room and people will have to undergo strict decontamination before visiting you.

5. Expect to have trouble eating, to be put on tpn, to develop terrible d, to lose your hair, to have lots of other nasty symptoms. Also expect to lose much of your cognitive function. Start collecting mindless crafts, books on tape, etc, to keep you occupied during your isolation. If you can use a laptop and internet on the ward, that's great too. The point is to almost kill you with the chemo, so expect to be very sick. Your blood counts etc will be monitored, and when they get as low as they can, you'll have your reinfusion stem cells. Life should start to improve after that, but you will still be dangerously sick and struggling.

6. Line up lots of people to send you cards, letters, etc to make sure you feel loved and supported.

7. Ask someone trustable to send email updates on your condition to all interested people, so you (and your family) don't have to deal with multiple phone calls. This is going to be a trying time for all of you.

8. Organise TRUSTABLE AND HYGIENIC people to cook you sterile, approved food and bring it to you once you're able to eat again. Expect many restrictions on what you can eat, and huge precautions - nothing that has been near anything mouldy, etc.

9. Make sure you have people prepared to do your laundry. There will be a lot, as you may go through many pairs of undies a day, and it may be messy.

10. No flowers on the transplant ward, and no wheat bags etc. In short, nothing that can infect you with anything.

11. Expect a long period of convalescence, and be prepared that you may never completely recover from the transplant. Expect cognitive trouble for a long time (or even permanently) afterwards.

12. ALWAYS AVOID PEOPLE WITH ANYTHING CONTAGIOUS, or have been vaccinated with live vaccines. You'll also have to avoid children for a while.

I hope that doesn't scare you too much, pw. As you can see, it's not something to be taken lightly, but if it gives you a shot at remission you (and your doctors) may decide it's worth it.

*hug*

Ivy.
Co-Moderator Crohn's Forum.

Post Edited (ivy6) : 8/28/2008 9:01:23 PM (GMT-6)


Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 8/29/2008 12:12 AM (GMT -7)   
If your other options are up, please consider something like a stem cell modality such as Prochymal before something as radical as BMT. But if the doctors say that's your best chance- I wish you the best.
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