Transplant Update - Day 4 - Monday 10pm
Sorry for the late update today. Today was very similar to yesterday she got up into her chair for a bit and tried to keep up the physio. She had a slightly better nights sleep so today was the first day that her eyes weren't trying to shut every five minutes. Pain control has also been a wee bit better, they moved the epidural this morning to a slightly different position on her back which seems to be blocking the pain more. She is still getting pain when coughing but is generally a little more comfortable, or as comfortable as you can be after that kind of surgery.
Blood gases were also slightly better today, they had actually been a bit border line yesterday so they had increased the amount of oxygen she was getting.
Also, she is being moved out of ITU to the HDU ward at some point this evening. I'll need to go along in the morning and see if I can find where they have moved her! So, in the broader picture everything is going well and she is about where they would expect her to be by now.
We have had our first small setback though. She is going to be given a bronchoscopy in the morning because there are some areas of consolidation on today's chest X-Ray. This basically means there is some fluid gathering in the bases of the lungs. This could be for a number of reasons. The most likely candidate at the moment is some early rejection of the new lungs. This is quite rare in the first week but always possible. Another possible cause is simply because she hasn't been able to breath deeply enough and cough properly because of the pain. Infection is the outsider at the moment. This isn't the end of the world. If it is rejection then that was guaranteed to happen at some point and can be treated. Similarly, if pain is the root of the problem they will get on top of it and give her help breathing deeper etc.
Jacqueline is a wee bit down about this and needs all your prayers, positive thoughts and wishes even more now.
I managed to show her all your comments today and it helped her a lot to read all the nice things people are saying. She also received the largest "bouquet" of helium balloons I have ever seen! thanks to Uncle H for that. We'll take it in for her tomorrow when she moves to the other ward.
Andrew
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29 comments:
hey Jac,
As you know from watching me (ok maybe I'm an extreme example!) and so many others, the road towards regained health after transplant is never ever smooth. There will be bumps, there will be setbacks, at times you might feel down and as if you are moving backwards....but you're not. Whether you feel like it or not, every day is another day closer to your new life being able to breathe and full of possibility.
Before you were only going to get worse, now with some hard work and patience, the team are going to get you on the path onwards and upwards and out into this new world.
Keep your chin up Jac, your journey is just beginning but I am so looking forward to your very first post on here to us all with your new lungs :)
many many higs xxx
Hi Andrew
Thanks once again for the update...hope you are managing to get some rest.
Please let Jac know that I am sending hundreds and thousands of positive thoughts and get well hugs her way - stay strong Jac, this is just a wee blip on your road to recovery. I'm thinking about you all the time and will be sending extra strong positive thoughts to you in the morning too (and will say a wee prayer to margaret/mary sinclair too) :)
Love you millions and I hope that the pain continues to ease off so that you are a lot more comfortable.
Can't wait to have you back xxx
Hi
Thinking about you and praying that things keep getting better and better each day.
You've done amazingly well so far after only 3 days.
Keep up the good work!
Lots of love
Anne, John, Ross and Seb
XXXX
Thanks again Andrew. Sending loads of love your way Jac and plenty of positive vibes. I'm sure that at the moment everything seems pretty tough what with the pain and needing the bronchoscopy and struggling to adapt post surgery. But you are one tough cookie and you have the most amazing transplant team possible looking after you. So stay strong and know we are all rooting for you and missing you. Take care xxxx
Jac, you really are doing amazingly well and I'm sure this is just a wee hiccup that you'll soon put back in it's place!
Your new lungs are just getting to know you and you'll soon be firm friends, I have no doubt!
Lots of hugs coming your way
Jennifer xx
Hi Jac
Glad to hear you managed to get a better sleep - even without my mad Paul McKenna tracks ;o)
Great to hear you're moving from ITU too. At this rate you'll be home before you know it and all the 'technical' stuff will be long forgotten. You're doing really really well and we're all really proud of you. I'm sure the consolidation is a temporary blip and you'll move past that in no time.
Sending you lots of big happy thoughts to go with your balloons.
Lots of love
Lee & Ali
xx
Hi Jac
You can do it girl! There will be ups and downs but those lungs will soon be doing everything you ever dreamed off and more.
Sending loads of love and hugs
Pauline and all at the Donor Family Network
Feel sure just a little blip, Margaret Sinclair prayers on the go very often, keep that positive spirit going. Big hugs and prayers. Rose and Kevinxxxxxxxx
Hi Andrew, Just wanted to let you know that I had my transplant on a Sunday and got moved to the ward on the Tuesday and it was that night where I got fluid on lung issues. There was also concern over fluid output too. I was PETRIFIED. I even cried wanting my old lungs back!! The docs worried and a bed was booked for me back in ICU. I ended up on CPAP and the docs worked their magic and I ended up not ever needing to go back down to the ICU.
The thing about transplant is that you're dealing with a whole new unpredictable set of issues unlike 'cf lungs' where you knew what to expect and at times you want that predictablity back for a minute- but JUST a minute!
The docs over in Freeman,as you've all probably sussed are excellent. Like I said each day you get past is a day closer to all of this being a distant memory.
Hoping for a quiet and productive day tomorrow (for you all): day three already is it? Hugs always Rosie xxx
From Shelleys dad.
If its any help to you Jac, Shelley had all the same things going on, bit of fluid, severe pain, and finding it difficult to cough.
She is now out for long walks every day with her mum and loving it.
She is still only 3 1/2 weeks since she was done, so don't be worrying.
Keep smiling and you will be back in Bonnie Scotland soon, loving all the fresh air, and even the rain.
By the end of this week you will feel a big difference.
Jim
Hi Jac,
You are doing amazingly well so far,just think of this as a little blip.CF is already one huge rollercoaster ride as you know,so just ride it out for a little bit longer until things have settled down again and then you can jump right off that rollercoaster and start planning everything you want to do with your amazing new life :D
Sending the most sparkliest positive hugs your way.
Nicola xxx
Just another wee hurdle for you to step over. Keep your chin up.
Love from us all
Margaret (G)
Hi
We are all thinking of you Jacqueline and Andrew. Your are doing so well keep up the good work. Looking forward to seeing you both soon.
Roseanne and family
xx
Hi Jac,
You're doing brilliantly. The road to full recovery was never going to smooth and I am sure this is just a blip. I'm thinking about you lots and sending lots of love, hugs and a million positive vibes. I know that you can do this hun.
Keep your chin up hun. I hope you have a better day today and that you are feeling a bit more comfortable.
Love ya millions and trillions!
Nic xxxx
Hello Jac and Andrew,
I'm rooting for you Jac and I'm also looking forward to you posting again.
xx
Hey Jac
It's great to hear that you're doing so well, especially after such major surgery. Out of ICU after 3 days...? Brilliant! Keep it up.
I'm sure setbacks like this consolidation were inevitable, but as long as you keep moving forwards you'll get there. Every little step leads away from Newcastle now.
Can't wait to hear all about it (although Andrew's certainly doing a sterling job keeping your public informed)!
Lots of love
C
PS. I am insanely jealous of your yellow 3-way tap!
All the Browns & Slaters are thinking and praying for you . Keep positive . love you loads
XXX
Hey Jacs, its the Laurie's here. Great to see the photo on your blog and well done Andrew. Babe you dig in and we will have the flags out from Mohill View to Mohill ( thats for your Dad ) I have passed your webpage to the boys so expect a few messages.
Thinking and praying for you all
Calum
Hey Jac
You look fantastic considering you have had a HUGE operation. I hope they manage to get the pain under control soon and you can concentrate on getting used to these new pink lungs.
Take care. Barney sends you puppy kisses - they always cheer me up, he is hoping they will cheer you up ;-)
xxx
Just a small bump on the road to recovery - keep going Jac, you're doing great :) xxx
Hi Jac,
I'm sending you positive vibes and willing you forward. There are wiser people than i (don't be act suprised;)) posting about transplants and their transplant experiences, so i suggest listening to them.
Take care
Anders xx
Hi Jac
I work with your Auntie Rose and I met you at Kelly & Andrews wedding. Great to hear the good news about your tx and just to say we are thinking of you and wishing you a speedy recovery.
Sue & Niel
Fantastic!We are with you every step of the way. Wonderful news for you and whole family. We send our sincere thoughts all mixed up with lots of love from David & Barbara (friends of Auntie Rose)
Thinking of you and the following people have also asked me to send their best wishes:
Susan Reid, Sally Bell, Margaret Smith, Elizabeth Robertson (my mother)and Elizabeth Brooke (my sister).
Also Jacky Crawford says she will add you to her daily prayers and Ann Sharkey has mobilised her mighty army of prayer warriors.
I know you probably don't know who these people are, but your dad will
Love from Linda
ex-PDU,Livingston
Hi
Wee Seb here! Having a nice time here at the in-laws. They're a bit off the wall though aren't they? No wonder you became a psychiatrist (wise move!)
Papa J keeps giving me a geography lesson every time we go out in the car and Granny A keeps playing Take That songs (she's a bit old for that is she not?) and she's convinced she's someone called Lulu (who??)
I am helping Papa J with his OU assignment (boring!!!) but we get peace as Granny A is at work most of the time! I am getting some nice walks though and lots and lots of cuddles and all I have to do is roll my big brown eyes and I can have just about anything I want! (Sound!!!) That's my new word by the way. Ross has taught me some new words too but that was when he tripped over my bed!
They really are a soft touch - not like Granny T and my other Papa J (but don't tell them that!) I am being a good boy though and sleeping in my own bed at night. Granny A says that if I am really good, she will buy me a glittery pink collar (yuk!)
Well I have to go now as it's time for my cocoa and bedtime story (No I am not joking!) I think it's Goldilocks and the Three Bears AGAIN! Ho hum! I am trying to humour them but please get well soon and hurry home mummy before I end up as daft as them.
I just hope it's not hereditary which reminds me how is my Daddy? I miss him too so give him a big lick from me.
Bye for now
Lots and Lots of Licks
Wee Seb
Still got the box of hugs you made for me when you were about 11 years old. I will refill this box and let you borrow it for a while. xx
Hey Jac, just a little hiccup methinks. I had this early on as well, and the team down there got me sorted pretty quickly.
You look bloody marvellous in the picture. You are very brave indeed.
Will be keeping you in my thoughts and prayers every day and every night.
Love
Pauline :)
P.S. Seb needs to get his own blog right now!
(loved that comment)
xx
Hi Jacqueline
Just to let you know - all the children and staff in St. Joseph's PS Linlithgow are praying and thinking very positive thoughts for you. We are following your progress and are delighted you are doing so well, so quickly. We are also keeping Andrew and your Mum and Dad in our thoughts.
With our very best wishes,
All at St. Joe's.
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