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Scott had his haplo transplant today

limeylass

New member
Hi all,
Apologies for being absent. Been a tiring time. For me too!
This last week was probably the most suffering Scotts endured.
4 days of total body radiation twice a day. Wiped him out and nausea. Not pleasant
Today was a breeze. Took 30 mins and he's doing ok for now. Keeping him in hospital for 5 days. Allow one person to visit which is me. Just got home and walked my dog. About to hop in my neighbors pool with a very large margarita. ( massively social distancing don't worry )
love Annette
 
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andym

Super Moderator
This news makes me so happy. Despite the suffering, getting to transplant is a time of hope. I'm glad you are taking care of yourself so you will be ready to care for him during the recovery.

It is a long haul, and even harder now due to the virus, but the thing that helped us was knowing that it isn't just a question of keeping him from getting sick. Preventing illness, cuts, even sunburn all prevent the immune system from ramping up too soon and help reduce the risk of GVHD. It is no sure thing but the work we do gives us a better shot at success.
 

zac495

Moderator
I'm so glad to hear from you and to know Scott got to transplant.
All my love to both of you. Please keep us up to date.
HUGS
Ellen
 

po18guy

Active member
The first few days are tough, once counts drop to near zero. He may feel like curling up in a ball, but maybe not. If he cannot eat, ask if a short course of something like Marinol would help. It jump-started my appetite and I needed it only for a few days.
 

Voyager

Member
I’m so glad Scott was able to get the transplant despite the Coronavirus pandemic. Hopefully he’ll have an easy time.
 

andym

Super Moderator
Annette, just want you to know that I'm thinking of Scott and you. This week can be tough but recovery does happen. I know you may be too tired to even think of posting but I hope you are feeling our support one way or another.
 

limeylass

New member
Thanks everyone for your kind words. They mean so much. Yes you were right its tough.
First day was a breeze, transplant took 30 mins and was anticlimatic.
Day 2 was fine expect for nausea. We walked a mile around the floor and Scott did 54 push ups. ( yes the nurse walked in on him and her mouth dropped )
Day 3 he was a little tired & nausea but ok. Walked 1/2 mile and did 54 push ups. Funny - the physical therapist walked in & made him use the stretchy arm exercise things with her. I couldn't help but laugh. I know he may not do his push ups for much longer but still, just humorous watching him have to do that.
Day 4 was yesterday. Not pleasant. His blood counts collapsed. he had a 99-103 fever all day ( Haplo transplants cause worse fevers apparently ) Nausea, Diarrhea, still did 54 push ups before that all started . But you were right - I think he wanted to curl up in a ball and sleep all day.
Day 5 - today - fever has broken. Still has nausea & extremely tired as he was up half the night puking & pooping.
Humor time - They have a board with the patients name, nurses name, techs name, date, treatment schedule etc. On that board they have a space to put the name that the patient prefers to go by. So it says ...Scott - prefers to be called ....Boo Boo Bear.
I couldn't resist. It brought some smiles and laughs. I think Im going to change it to Sandra tomorrow.
love Annette

Will keep you updated. We are hoping he will come out tomorrow if his fever stays down.
 

andym

Super Moderator
Remind me never to challenge him to a pushup competition! This is a rough week but between his physical activity and your sense of humor, I think you both deserve some kudos. I hope the nausea slows down soon.
 

frankhond

Member
The week after transplant I couldn’t eat at all, got hooked up to IV food and watched Netflix. Sounds like Scott can’t eat that well either. I would suggest to lay a bit low with the pushups, the body needs energy to build a new immune system. All the best to BBB!
 

limeylass

New member
I agree frankhond, he should be conserving his energy. Scott is stubborn as hell. Used to do 100 push ups a day so its hard for him, he worked from his laptop right up to his radiation days prior to transplant. In some ways he drives me nuts and I think he's nuts but on the other hand, I think mind over matter works for him to a certain extent and the transplant dr thinks he's defied the odds so far because of his strong physical and mental attitude. He had a slight fever last night so not coming out today but hopefully tomorrow. Thanks for all of your support.
 

frankhond

Member
This is from one fitness nut to another :). I had relatively few side effects after my sct (“only” an auto but still) and my drs also praised my fitness level as a reason for that. My message to Scott is: if one can’t eat properly the training will only break down tissue. This is probably the time to check out that exciting stretching regimen he always wanted to try but never had the time... also I’ve done two major treatment regimens now, and both times the body has responded vigorously, almost as if on steroids, once I started to work out again. That is something to look forward to. All my best to you both!
 

Step2

New member
T On that board they have a space to put the name that the patient prefers to go by. So it says ...Scott - prefers to be called ....Boo Boo Bear.
I couldn't resist. It brought some smiles and laughs.
That's so funny - we all need our pet names! Glad to hear that he'll be home soon.
 

Voyager

Member
Scott’s push-ups remind me of my two+ months in the hospital after my allo transplant.The nurses warned me not to run laps around the corridors with my partner Ivy, who looked suspiciously like an IV pole!

I’m glad his fever broke. Hopefully he’ll be feeling better soon.

PS - I just eked out 25 push-ups for Scott. Now he only has 29 to go!
 
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limeylass

New member
Funny Voyager!

Well Scotts no longer doing his push ups so Im glad you are doing some for him.. He can barely swallow. He was in hospital for 6 days, home for 3, then back in 3 days agos. He wasadmitted back in because he couldn't eat or drink because of mucositis in his throat and severe nausea. I have been very worried about him as he hadn't eaten anything in 3 days. Today was a slightly better day. His pain and nausea is being managed via IV. He needed no transfusions for the first time in a week. So maybe his blood counts are starting to come back. But more importantly he drank 3 Ensure drinks. Couldn't manage solid food but we are moving in the right direction. This transplant is something else. Worse than we imagined to be honest. The Dr. said this regime he had prior to the Haplo transplant was pretty brutal. The total body radiation is what has caused this. Weird as it took a week to take effect on him.
Thanks everyone for lifting me up. This past 12 days has been rough.
love Annette
 
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