Advise for returning home after BMT?

[Whizbang]

Tii,

you have some good advice...

All the best and God bless...

[Heather8773]

Tii thank you for responding. It sounds like your sister and yourself had quite an adventure together! It is very inspiring and brave how strong you are for her. I'm happy things are getting better and better now.
I am doing good thank you. At this moment I can say my husband is doing very well. I am a very cautious person so I try not to celebrate until things are concrete but With that said I am so thankful he is doing as well as he is at this point!
I am not trying to be naive or pretentious in pretending i dont have fears but i am so focused on the moment, and foucused on positivity currently that I am snubbing them as quickly as they come. One of my favorite quotes is --Feed your faith and your fears will starve to death.

[DebS]

Heather,

Haven't been on here for awhile. My brother passed away last Sunday. Your quote is so meaningful for me today.

Hope things continue to go well for you and your husband.

Doug is improving, but it is slow. I was away over night to attend my brother's funeral. We had some people come in and stay with him. But things got lax a bit.

Now the warden is back!!!

Deb

[Neil Cuadra]

Deb,

I'm very sorry to hear about your brother. I think you told us that he was diagnosed with lung cancer just a few months ago. What a sad turn of events for you and your family.

[Whizbang]

Deb/Doug,

Sorry for your loss, you will be in my prayers...

God Bless...

[sbk007]

So Sorry Deb..
I lost my sister to that disease 6 years ago. She was 46.
It hurts.
Hang tough,
Steve

[DebS]

Thank you all. It has been a tough time. And today was no exception.

Doug has been having issues with his creatinine numbers. They have been way high and they have adjusted his meds accordingly. He has been getting bags and bags of fluid. They took him off of Tacro altogether. They said that his kidneys were taking too big of a hit.

So today we were at the hospital for 7 and a half hours while he received more fluids. The doctors said that most people with numbers that high were admitted but that they were trying to keep him out of the hospital.

We have to go back tomorrow for another evaluation and probably more fluids. Meanwhile I have been and am still preaching to drink, drink, drink!

That goes for you too, Dave. I know on another post you mentioned your numbers. Today Doug's creatinine was 4.66!!

[Heather8773]

Deb I'm so sorry about your brother! Please know if you need to type it out we are here for you!
I love you call yourself the warden I LoLed bc we say that to. That and the Bear. My friend said to me you" mess w the bears honey you'll get ate " we cracked up and it stuck. My mom is helping and thats been so amazing but the other day I came home to a live basil plant and her telling me she slept w the window open!! I just reminded her he cant be out wo the mask so a window is not ok and put the plant out. I've had a year to learn the rules so I can't expect her to know them all I guess.
Is Doug drinking more now that he is haveing high creatine? Maybe he will now he's home and probably will be up for whatever keeps the hospital time less?
Deb I agree about your advise to Dave! Drink drink drink! Flush those kidneys and get thoses harsh meds washed through! Its very sweet and telling of your character that your going through a lot and still caring for others. Good advise.
My husband is still getting magnesium IV at home and when we go in also a pill twice a day. His prograf just keeps whipping out his mag.

[dfantle]

Originally Posted by susanML

Well Monday is finally coming faster to get the details. I am so happy and ready to get going. I have loved reading everyones blogs on how they are doing and am ready to become one of the successes also. Keep it going!!! Love ya - Susan

Hi Susan, I hope all is going well!! You're now about 4 weeks out and though some days may seem to move slower than others, all of a sudden you'll look back and be amazed how much time has passed since your day 0. I'm now 10-1/2 months post transplant & I'm amazed that it will already be 1 year next month.

All the best!

[AAMarge]

Hello All--
This is old, but there's always some one new looking for advice. I would say all of the above are great suggestions about moving to the "at home" world.

I wanted to comment on something mausmish said about her concentration. I don't think there is enough discussion with patients about this. For some people (both my daughter & I have been through chemo) chemo just blows your concentration abilities for awhile....months sometimes. I was a voracious reader who thought I would spend my chemo time reading....couldn't get through a newspaper article.

My daughter post-BMT had difficulties going to college until she came to terms with some if this. It does improve, but I just think it's important to know that even as your body slowly recovers, your mind may also need recovery time. Don't be discouraged if at first you feel mentally mushy!

[summerdrake]

Hi Heather!

I was in the hospital for a straight 6 weeks when I was going through my SAA. They would let me go outside when I wanted in the beginning but only if I had someone push me in a wheelchair because of fear I would fall. Therefore, I didnt get much exercise the whole time. After my transplant they would let me walk outside and to see my daughter in the lobby but never alone. Upon returning home, I was super weak. I think that played just as much as an emotional role as anything else in the recovery process. I was always active and when I got home all I could think was that I would never get my strength back. Not true at all! It took a couple of weeks but I was able to do a lot for myself after that time. I just had to keep moving. Keep your husband moving! He will be tired and he should get his rest, but staying active will help so much. I had a 3 month old to tend to so I knew I had to keep it up.

Another thing, about the sun exposure. Yes, be super careful..but tell your husband to not be afraid to step outside for a few minutes and warm his body up. When my NP first told me I would never be able to spend time in the sun again I was devastated. Now, by no means am I a beach bum (because I am a true red head) but I love being outdoors. So sunscreen is nothing new to me lol. But when they say to be careful, do so but dont think a minute or two in the the sun is bad.

Other than that, good luck to you guys and im glad youre moving forward with treatment.
You are strong! Stay positive and kick AA in the butt!

[summerdrake]

Originally Posted by AAMarge

Hello All--
This is old, but there's always some one new looking for advice. I would say all of the above are great suggestions about moving to the "at home" world.

I wanted to comment on something mausmish said about her concentration. I don't think there is enough discussion with patients about this. For some people (both my daughter & I have been through chemo) chemo just blows your concentration abilities for awhile....months sometimes. I was a voracious reader who thought I would spend my chemo time reading....couldn't get through a newspaper article.

My daughter post-BMT had difficulties going to college until she came to terms with some if this. It does improve, but I just think it's important to know that even as your body slowly recovers, your mind may also need recovery time. Don't be discouraged if at first you feel mentally mushy!

Hey Connie, this is so true. I didn't even realize it until after everything happened. I was so mentally checked out after chemo. Thanks for sharing!

[vickij]

You are so right about the concentration after chemo & transplant. I didn't know if others had this problem too. I read a lot & played computer games, but after transplant I couldn't concentrate on anything. Glad to hear that it gets better.

[summerdrake]

Originally Posted by AAMarge

Hello All--
This is old, but there's always some one new looking for advice. I would say all of the above are great suggestions about moving to the "at home" world.

I wanted to comment on something mausmish said about her concentration. I don't think there is enough discussion with patients about this. For some people (both my daughter & I have been through chemo) chemo just blows your concentration abilities for awhile....months sometimes. I was a voracious reader who thought I would spend my chemo time reading....couldn't get through a newspaper article.

My daughter post-BMT had difficulties going to college until she came to terms with some if this. It does improve, but I just think it's important to know that even as your body slowly recovers, your mind may also need recovery time. Don't be discouraged if at first you feel mentally mushy!

Hey Connie, this is so true. I didn't even realize it until after everything happened. I was so mentally checked out after chemo. Thanks for sharing!

[teke152]

Keep everything as sterile as possible and watch for anything out of the oridnary. My wife is on day +350 now and she had limited trouble once home. Just be available for his needs and trips to the hospital for count checks etc...