Hi, I'm new here...
 

My son just had a BMT and is now in the recovery stage. I'm curious to hear how this journey has been for others and hopefully get a few of my questions answered.

-How long did your child have his/her Hickman line?
-What is the benefit of keeping it for such a long time?
-Are you ever considered cured?
-At what point is a BMT considered successful?

Thank you!

Nicole
http://joshuasrecovery.blogspot.com

Hi, Nicole. Welcome.

In my case the patient was my wife, not my child, so I'll skip this question and let others answer.

Having a Hickman is a tradeoff: It's a great convenience and avoids a lot of discomfort, for as long as regular access to veins is needed. But it's also a potential risk for an infection, and requires regular care that can be a burden. The need for it lessens over time, so you and Joshua's doctor can decide when the tradeoffs no longer favor it.

I'd consider a transplant to be a cure, since you've replaced faulty bone marrow production with a working system. There can be remaining medical issues, notably Graft-Versus-Host Disease as a result of the transplant, but the aplastic anemia is gone.

The first critical measure of success is simply surviving the transplant and having counts come up from engraftment during the immediate recovery period, even thought dips in counts are common along the way. Doctors tend to measure by milestones like survival and absence of serious side effects at 60 days, 1 year, 5 years, and so on, but to patients complete success means returning to a normal life and normal life expectancy.

I see from your blog that Joshua's transplant was April 14, so you are sailing strong more than a month out. Congratulations to you and your family.

Thank you Neil!!!

Hi Nicole,

My daughter Danica is 12 she had her VsAA and had a BMT on 11/29/06 her fraternal twin sister was a perfect match.

Danica had her hickman removed about 2m after transplant. The benefit was she had to have her blood drawn every week and there was no need for a needle. She did have a slight infection about 1 1/2m out and had to go back in the hospital for about a week, it was nice that the hickman was still there.

Danica is now 1y5m since her BMT and is doing great. She is back in club soccer and so far is showing no signs of GVHD.

Is she cured??? I have no idea,but so far so good!!!!

Congratulations to you and Danica, it sounds like things are going very well!

I think the Hickman bothers me more than it does my son! I worry that he'll pull it out, or that it will become infected. Today is Day +48, so hopefully the line can be removed next month (or so) when he has tapered off of the Cyclosporine.

Nicole,

My daughter had a BMT for AA when she was 5 years old. She had her Hickman for 6 months post-transplant because she had complications with GvH and needed frequent blood tests, IV meds and IV nutrition. Her doctor considered her "cured" about 3 weeks after her transplant when her counts were sky high and going great. While her transplant was considered very successful, there is a reason why she needs to go in for yearly bloodwork, and I still look for signs of low blood issues...I don't think that will ever go away.

Suzanne