British Lung Foundation
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Bar infections my son has transplant in February?

Update on my Son's AML. My son was allowed home for Christmas. Which looked very doubtful until the last test showed no further virus evident. Anyone that visited had to remove coats and hang them outside the room he was in. Make sure they were infection free and no tummy upsets. Then fight with Wrapped face masks that were outside and everyone had a different way of wearing it seemed? Plastic aprons also had to be worn Gel the hands before entering the negative pressure room and we are in.

It seems after a worry he had got C Diff again and then later to take the action of removing his central line as there seemed to be an infection that they could not fully treat as it kept coming back. The central line has 2 inputs that go into a single line that goes into the chest over his collar bone and into a main artery. His biggest problem was after they removed it he was reliant on 2 cannulas which have to be changed every few days. He was often with 3 or 4 bags of something or other.

As for the infection they found one in the central line and the Coronavirus in his throat swab and blood. This is also known as the middle eastern flu and they informed him that anyone in a low immune like him it could be dangerous and people with lung disease and they told my son I must not take my mask off when in there until they give the all clear.

He was home a few days before christmas and he loved it. He still has to go and have treatment at the local hospital every few days but at least he is home with his wife and rabbits. He is eating as much as he can as a high fat diet is the order of the day. He is 6 feet 2 inches and thin before all this he has lost 2 stone so is to thin now. He went to the transplant hospital late last week and he has been given a date when they are going to start the transplant procedure which is early February as long as he keeps infection free.

The down side is the Kit Gene he has if the transplant does not show it is working in a short time it may of failed!

Fingers are so crossed.

Be Well

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Well that sounds all positive Offcut I pray the transplant works and he is soon well again. x

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Thank you

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Brilliant that your dear son was home for Christmas and what a long way he has already come. The transplant so has to work.

Love to all and crossing everything.

Xxx

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It will seem like an age as well I bet.

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Everything crossed and thoughts are with u all xx Sonia xx

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Thanks

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Please the gods that the transplant goes ahead and is successful xxx

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We will only know after they have done it?

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Fingers crossed no more infections and your son's transplant can go ahead. If it's good fat he needs to help with his weight problem, does he get lots of coconut oil? It seems that it's one of the good fats now. It can be eaten by the spoonful. Or put in tea/coffee.

Xx

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Even now he is still a funny eater so it has to be stuff he knows.

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Dear Offcut. I do hope that all goes well for your son and that he has his transplant, which is successful. I will be thinking about you when I am away and hope that I return to good news.

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Thank you

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Hoping and praying that the transplant goes well. Thinking of you all xx

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Thanks

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Sooo glad your dear Son was able to be at home for Christmas. I am hoping too that he stays infection free and the transplant goes ahead and is a great success. Love to you Offcut, your Son and family.

With love

Sue xxx

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His biggest issue is the visits to hospital at least 3 times a week

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Gosh, what an ordeal for all of you but so great that he could come home for Christmas.

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He was resigned to not being home for a time but made his day when he got home.

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This is good to hear OC. I wish him all the best with keeping well for the transplant.

How difficult this must have been for you to have to deal with. My heart goes out to you. X

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thanks

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it is strange how they have to knock him down to make him better?

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How lovely for him to be home, though you must want to swathe him in bubble wrap and keep him safe from germs until the transplant date arrives. What a nerve-wracking time for you all. I hope it speeds past and he is soon on his way to recovery.

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I wish we could see those bugs then at least we could move away from them.

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It's lovely to hear your son was home for Xmas Offcut, It must have been so nerve-wracking too, having all those do's and don'ts to remember.

I hope he gets stronger and keeps well enough for the transplant and that we will soon be hearing he's had it done and is on the road to recovery. xx

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The tea trolley was sometimes a problem as they just walked in not knowing so we intercepted them and did it all at the door.

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Oh dear Offcut,what a difficult time for you all,it must be a nightmare watching you darling boy suffer. As you say," All fingers crossed "for a happy result. Look after yourself, Best wishes, Bulpit

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Worse one was when I was unable to see him as I was ill and then saw a big difference in him. It did upset me.

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Hi again Offcut. I am sure it must have upset you dreadfully. Just awful, Do hope you are feeling a little better yourself, Best wishes. Bulpit

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Well Offcut the news sounds more positive and not too long to go, so fingers crossed and lots of praying that all goes well and no infections before the proprosed. Every best wish to yourself and family for a good outcome xx

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PMA all the way

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Hi Offcut January will fly by I do hope all goes well with the transplant the match is perfect as it can be so lets hope this goes in his favour and it works.

We are all thinking about you and the family please keep us posted

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I hope it does.

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Hi Offcut, I have just read your post. Good news your son was home for Christmas. I hope all goes well with transplant . What an ordeal you have all been through. Let's hope 2016 is kinder to you. Love Margaret x

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Thank you

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Offcut I`m so pleased for your son that he made it home for Christmas and I`m sending lots of positive thoughts that he stays infection free and that the transplant goes well. You all deserve lots of luck and peace of mind after all the worry, Sheila xxx

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That's wonderful news & must be the boost you all need. Let's hope the New Year carries on in this positive way for you all - and well deserved!! Hope all goes well up to & including the transplant. Don't forget to take care of yourself too - All best wishes to you all x

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coming ever closer

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Good luck to you both -I am sending positive thoughts your way for you and your son.

I know a guy who after the transplant ( couple of months later) he went back to work and the last I heard he was still working, he was in his 40s then.

However I also knew some who didn't make it too and it was due to an infection that took them. Take whatever steps and more to keep your son infection free.

I was fortunate in that the triple course of extremely high dose chemo I was given put me in remission and I have stayed clear.

I must say I am worried about him being around rabbits. Everything I touched had to be wiped down with disinfectant before I could touch it. They also wouldn't allow any flowers in water or plants as they also carry germs. Visitors were also strictly restricted and those allowed had to go through the disinfection programme with paper gowns / face masks and hand washing nor were they allowed to touch me but still the bugs got me, spent a lot of time on antibiotics. They would not let me go home during the treatment and yes you can go nutty being stuck in hospital all that time. (They locked my room windows as they thought I might try and climb out , they also sent the psychiatrist in to see me one time as I started seeing things !).

I am glad they are keeping an eye on the in line catheter as that was that bugger that caused the problem I have had to live with since. It was easier to have it installed so that all the stuff you have to have is just plugged in but If I knew then what trouble it would cause, I would have put up with having the cannas ( although they do hurt , restrict your movement and you can accidently pull them out - done that- had blood everywhere! )

Continue staying positive .X

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Thank you for the info. The rabbits are in a sort of detention area that he does not get involved with. When he goes infor the transplant there is only one person in the room at any one time and only 4 people are allowed to visit in person. All others will talk through an intercom.

I have pulled my cannulas out more than once and had a femoral leak. Which worried me more after they stopped it and explained how dangerous it was! My worst was when they nicked something important putting in a second chest drain and I had to have 6 units of blood :(

Be Well

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