BMT

[Guest guest]

Dan,I am so sorry about your loss. I am sure the pain from that alone overshadows the problems your CLL is creating. Hang in there for the other people in your life and take your disease head on. You are in good hands at the Simon Center.My prayers are with you BMT

Has anyone gone through a Min-Transplant, I am scheduled to have one mid-March. Have had an infection in my lungs which is clearing up and can't move

forward until lungs are good. Transplant will be done at IU Simon Cancer Center. To top things off I lost my wife of 39 years in January, so my emotions

are pretty fraid.

Age 64

Dx 2004

Any input would be appreciated.

Thanks

DAN

[Guest guest]

Dear Dan,

You’ve been going through an awful lot of late. I’m so sorry to

hear about your loss. I hope you won’t let it affect your will to fight your

way through the mini-transplant. Please know that we’ll all be thinking of you

and hoping very hard that things will turn out positively for you.

Sincerely,

Karni

[Guest guest]

Dear Dan,

I am sorry I miss this digest last week. I am really sorry about your lost, I have always felt that it is much harder to be left here and suffer the pain of loosing loving ones.than be the one that goes.

There is a lot of info about BMT or SCT on the list, I am 11 month post transplant and there are several people that have been through this journey.

I think preparing oneself for what will come does help a lot, I did a lot of research and read all I could about others experiences. I found useful to study the preconditioning protocols I was going to have, I think I have posted it on this list, the precondition protocol is usually different in each transplant unit, I found that knowing what is coming helped me to cope with things better.

There were some very good posts, I remember someone recomended to make a list of fears, which I did, I remember one day a very good friend and my daughter wanted to know what I had written and when I read it to them, they had a solution for each fear and they did not think there were bad at all, so I pointed to them that they might not be fears for them but there were fear for me and I had to deal with them, what came out of the conversation in the end was that they actually managed to put themselves into my shoes and understand things a bit better

I also made a list of things I wanted and things I did not want, like for friends visiting me, I pointed out that it might happen things might go wrong and I might not be well at all, so it that was the case I did not want any one sad or depresed visiting me, I only wanted happy people and those that could make be laugh and pamper me, I made a list of things my visiting friends could do for me during their visits and I also did a lot of things to make my 5 weeks in hospital comfortable even one is very tired with the drugs.

..

I have to admit I remember those days with fond memories even they seem such a long time ago now.

Try to find post refering to SCT on the list and if you like to ask especific questions, please feel free to email me off line and I will be happy to pass on some of my experiences.

Best regards

Chonette

[Guest guest]

Dan,

I was interested in the fact that you have had a lung infection. What kind was

it? I have one called MAC ( microbacterium avium complex) and have been treated

with antibiotics for the past two years. I still have at least another year to

go. Other people have mentioned infections of different kinds, but I have never

seen the one mentioned that I have. I am in W & W and is doing O.K.so far. I was

diagnosed in 2005.

Bente, Arizona

________________________________

From: on behalf of DAN NEIDLINGER

Sent: Wed 2/24/2010 7:35 PM

Subject: BMT

Has anyone gone through a Min-Transplant, I am scheduled to have one mid-March.

Have had an infection in my lungs which is clearing up and can't move

forward until lungs are good. Transplant will be done at IU Simon Cancer Center.

To top things off I lost my wife of 39 years in January, so my emotions

are pretty fraid.

Age 64

Dx 2004

Any input would be appreciated.

Thanks

DAN

[Guest guest]

No , it is an email from today. Maybe I misunderstood that she didn't get

the BMT yet, she was talking about the chemo, which precludes the BMT. I never

was able to get on that Care page. She would have been better off going to

Caringbridge, I think.

xoxo

Lottie

[Guest guest]

>

> No , it is an email from today. Maybe I misunderstood that she didn't

get the BMT yet, she was talking about the chemo, which precludes the BMT. I

never was able to get on that Care page. She would have been better off going

to Caringbridge, I think.

> xoxo

> Lottie

_____________________________

Yes, Lottie, she is post transplant day #8 and is actually doing quite well as

these things go...especially tolerating some solid food and walking daily. She

is on some anti-rejection drugs that are causing some nausea and other issues.

I had a hard time at first getting her CarePage but now that I am on it, they

sent me a daily post with a link that I can just click on and I go right to her

update. So, you might try it again....once you get connected, the system works

very well.

C.