17th November 2011

17 Nov

Hi Everyone,

Well I don’t really know where to start….. Kerry has literally had the most traumatic 48 hours imaginable.  I will do my best to explain all that has happened.

I will go back to Tuesday, Kerry settled in well at Harefield however I received a text from Dad around 5 saying that Kerry had had a bad day and ventilator options were being discussed. The surgeon went to see Kerry around 7:30pm, for what she thought was a little update, to inform her and mum that there was a possibility that there might be a pair of lungs on their way for her. He explained that there was a non- heart beating organ donor on a life support machine and the professionals had come to the decision that it was this patient’s time for the machine to be turned off. The conditions in which the transplant would be possible were; obviously all the matching checks and assessments of the lungs themselves would have to be carried out and it was also explained that there was a time constraint on the donation possible (if there was longer than an hour between the life support machine being turned off and the patient’s body shutting down then the surgery would be too risky as the lung would have been out of use for too long). Kerry was therefore completely prepped for the operation and was told that they were going to turn the life support machine off at 1:30am that night so by 2:30am she would know if she would be in surgery for the transplant at 3am. I found this wait traumatic and scary so I cannot even begin to comprehend what Kerry went through, however Mum said she was very calm and brave as always.

At 4am, we were informed that the time unfortunately this time the transplant would not be possible. Although this was obviously a disappointment for Kerry, it was obviously not the right pair of lungs for her. In addition, positives can be drawn from this experience in as much as Kerry has now had her ‘false alarm call’ and also knows all of the preparation procedures so next time (hopefully the time, she will know what to expect).

Quite naturally, all of this waiting and anxiety had left Kerry feeling quite sick so she was given an anti sickness drug (so sorry but I have forgotten the name of it exactly), which I think was given to her via a drip line. Kerry had had the drug previously however never so strongly or via the drip. Kerry had a dramatic reaction to this drug and to be blunt it very nearly killed her! Kerry was rushed to ICU as she took a dramatic downhill turn and Phil and Dad were told to get on next flight (so at 5:50am they rushed to the airport to get on the red eye). Mum and Kerry have both explained how close they thought she was at this point and Kerry told me that she was so close to giving up and the only thing that kept her going was the knowledge that Phil and Dad were on their way and she wanted to say goodbye! However, in true Kerry Maletroit style she pulled though and managed to stabilise herself and fight the reaction. By the time Dad and phil arrived she had been through the worse and was coming round again.

By this point, Tom Edgar and I were besides ourselves with worry and just couldn’t predict what would happen next, every text bought another, dramatic turn. Mum and Dad got in touch to tell us that she was recovering from the reaction well and would be moved back to the ward shortly. It was then that we decided to go over and see her. Phil kindly came to pick us up from the airport and drove us to Harefiled. When we arrived in the room we were immediately informed of the most recent near miss…..

Kerry, Mum and Dad had been in her room when suddenly Kerry had gone extremely pale and almost a bit green. Mum knew something was wrong and called for the nurses. Mum told us that Kerry was not responding to them and was near to unconsciousness. After the emergency team rushing back into her room, they discovered that the tube on her bi-pap machine had become undone and therefore Kerry had not been receiving oxygen. She was recovering from the episode as we entered the room and did look a lot paler than usual. She was surrounded by machinery and looked so small amoungst it all! She had her Bi-pap machine back on and in action so could talk, however it can be hard to hear her when she’s on this.

Having said this, she soon perked up and we have such a lovely time with the Kerry we all know and love. We were there for a few hours and all caught up, she was telling us her account of all of the recent events, joking, laughing, then getting cross that she couldn’t laugh and telling us not to! She was in true Kerry form and it was delightful to see her so well considering everything! We left her to rest around 9pm as she was exhausted and needed to have things sorted for the night time. We all loved going to see her and were so grateful for this time with her. It was good to see Mum too who was also exhausted but holding up really well (in true Skinner form!) We went back to Auntie Jane’s with Phil as Mum was staying for another night in the family rooms (which are like first year uni halls) and Dad went off to find himself a hotel nearby.

At 5am this morning we were informed that Kerry had had another bad turn….. she had been in the room with one of the nurses (a really lovely nurse I have been told) when suddenly she just stopped- her lungs decided to give up completely and not work for her. This was all very sudden and unexpected- she was rushed to ICU before Mum could even get over from the family accommodation (which is a 2 minute run!) We were told that Kerry was going to be put on the ventilator as she was no longer breathing for herself. She was promptly hooked up to the ventilator and made unconscious (which was a big risk in itself as they were unsure if Kerry’s lungs would take to it being in the condition that they are in!). Luckily this was successful, but really very scary and also the very last stop for Kerry really. Again, apologies for any naivety, but it is my understanding that on the ventilator, although this allows Kerry’s lungs to rest and her to be able to rest the problem with the ventilator is someone with as poor lung function as Kerry’s would probably not be able to come off the ventilator once on it and also as your other organs are not functioning normally there is a time constraint on how long she could be on it and still have a transplant.

Tom, Ed and I got on the first flight home as there was nothing we could do to help and didn’t want to get in the way. We felt so fortunate to have seen her so well the night before! When we landed, we phoned Mum for an update around 9:45am. She told us that Kerry had gone into surgery to be placed on a special machine called the ‘Ecmo machine’ which is like a ventilator in that it eliminated the need for the lungs to work. The machine aerates the blood for you and without use of the lungs. Again, apologies for any ignorance on this topic, but my understanding is that the benefit of this machine as appose to the ventilator is that it gives Kerry more time as you it does not work the other organs for you so the body stays stronger for longer (and more time to allow to wait for a transplant) and also Kerry can be conscious on this machine. This machine has only ever been used on 3 other patients (all of which have gone on to have successful transplants and one of which was after 5 weeks on the machine). As it is so new they only decide to try to make it work on very specific patients as it is a very risky procedure to get the patient on it. The decision was made that they would try this machine on Kerry (being so young and a couple of other positive factors made her eligible). The operation was long and came with great risk. I think the op took around 4- 5 hours- Phil text us around 1:30 to say that the machine had been successfully attached. I did not hear too much else during the afternoon however was informed that the first 24 hours are critical.

Around 5pm today I was informed that Kerry was OK and was still on ventilator too. The plan is for them to try to reduce the need of the ventilator slowly so that Kerry is just relying on the Ecmo machine. At 5 they were trying to bring her back to consciousness slowly and app she had made a couple of movements and her eyes looked like they were trying focus. The big thing now is for Kerry and the doctors to determine what Kerry does and what the machine does to keep her breathing. It is all very scary but we are all keeping positive that this will be Kerry’s bridge to her new lungs.

It is unbelievable what she has been through in the past couple of days, not just the turn of events for how much she has tolerated and fought! She is just incredible and continues to impress us all!! Mum, Phil and Dad have been brilliant and staying really strong and positive.

Thank you so much for all you texts/emails/kind words to Kerry and all of the family, it is so greatly appreciated! Now if you could all please keep your fingers, toes, arms, everything crossed that her new lungs come very very soon!!

Kim xxx

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17 Responses to “17th November 2011”

  1. Alison November 17, 2011 at 9:57 pm #

    Wow Kim, well done for writing all of this up for us, which we so appreciate, as we have been so worried. It really helps to know what is happening. We are thinking of you all so much and praying for Kerry all the time. As you say, it’s amazing what she has been through and is fighting on so positively, bless her. We’re so glad you were all able to have that lovely time with her. Surely her new lungs will come soon! With very much love from us all, Alison xxx

  2. Maria Weston-Dingle November 17, 2011 at 10:08 pm #

    Thank you and well done for giving so much detail Kim. She does show amazing strength and determination by coming through these crisis. Mind blowing really!
    I am still in shock but wanted to comment before I re read your account with James (when he gets in from drumming) later.
    Nana has been keeping us up to date by text.
    Love from all here.
    X

  3. Gerry Padden November 17, 2011 at 10:10 pm #

    Hi Kim

    Your big sister is a really tough cookie me thinks? Please say hello to the folks and the family and remind them the Dingle and Maletroit clans are in our thoughts and of course our prayers and remind yourselves that if God brings you to it,then He will bring you through it!!
    As for you young lady…….Kerry must be proud of you as you keep her blog updated so efficiently…….your updates have been so honest and revealing that I was moved to tears again reading the latest news.
    The footprints story comes to mind for Kerry at this crucial time, we just wait for God to put her feet back on the sand when the time is right.
    Love to you all

    Gerry, Margaret,Jordan,Jenna xxxx

    • James Dingle November 18, 2011 at 12:09 am #

      Thanks so much Kim for the detailed account which fills in a lot of the questions at our end about what’s happening. It’s especially good to hear about the Ecmo machine and know that people have been on them for weeks before a transplant. Amazingly brave and strong behaviour from Kerry. What a roller coaster of a week. So glad you all got over there are had a lovely time with her.

      Thinking of you all constantly and sending our love and hoping against hope.

      Love from Uncle James and the Cambridge Dingles

  4. Cheryl Emmanuel November 18, 2011 at 12:28 am #

    I have everything crossed and you are all in my prayers. Love to you all

    Cheryl Emmanuel

  5. Lorna Peneueta November 18, 2011 at 12:45 am #

    Oh Kerry, I am thinking of you my darling. Hang in there, positive thoughts and hopes that some lungs are coming your way very soon. Well done to your sister for keeping people all over the world who are thinking and praying for you updated, not the easiest job and she’s doing it wonderfully, thank you Kim.
    Lorna

  6. Rosemary Ruddy November 18, 2011 at 9:57 am #

    Dear Kim

    Thank you so much for keeping us all updated in the midst of everything that’s happening at the moment. Kerry and the whole family are constantly in our thoughts and prayers at this critical time.

    With much love to you all
    Rosemary, Eve, Katharine, Andrew and Alex xxx

  7. Suzie Foster November 18, 2011 at 10:17 am #

    Thank you for your post Kim and for keeping us all updated. Kerry, we are sending our love and lots of thoughts of healthy pairs of lungs. You are always in my thoughts and prayers and I look forward to giving you that knitting lesson soon! Stay strong and positive. All our love,
    Suzie & Matt x

  8. Victoria Glen November 18, 2011 at 10:27 am #

    Wow that is a lot to go through!! I will keep her in my thoughts!! I know two of the people who used ECMO and they are coming on leaps and bounds!!

    Sending my love to you all at this really hard time!! xx

  9. Ruth November 18, 2011 at 7:38 pm #

    Hi Kim, Ed and Tom
    I just want to say that you too are all being incredibly brave. There is no easy way to watch your sister go through all this. I am so glad you had the lovely evening together and such a special time to catch up.
    Just want you to know that I am thinking of you too.
    Much love
    Ruth xx

  10. Sophie Huelin November 18, 2011 at 7:40 pm #

    Dearest Kerry your tenacity and strength continues to inspire me, you are such an incredible lady. Each day sending love and prayers to you, Phil and your family.

    Thank you Kim for writing in so much detail at such a difficult time for you. Glad you had that lovely time with K. Here’s to her new lungs finding her very soon.

    Much love and positive thoughts to all of you.

    Sophie
    Xxx

  11. Carolyn Eley November 19, 2011 at 9:08 am #

    Hi Kim,

    It’s Carolyn here, Uncle David’s worst half: Your blog is amazingly brave – I know what it is like to write these heart-wrenching episodes and you are a wonderful little sis to endure with this. Please give Kerry and Phil all our most positive and loving wishes. Dan sends his best from Colombia: He was told he would never live without a ventilator … hey, much they know! He is travelling to Cali today to visit the charity where he hopes to set up his apprenticeship scheme. He has a very strong spirit and Kerry, too, is strong and brave and has an enduring spirit and a lovely family to help her through this.

    Love and light to all of you, Carolyn and David xxxxxxx

  12. Joephine Monaghan November 19, 2011 at 11:38 am #

    Dearest Kerry, You are such a strong lady, you have to keep up the fight. As we in the transplant world say, once you have had your “dummy run” your real call is just around the corner…… and beautiful new lungs are waiting for you, to give you that 2nd chance at life. Let your body rest, regain your strength and be ready for the real deal. Lots of love Josie xx

  13. John Wileman November 19, 2011 at 12:57 pm #

    Kim – and all the family; – well done ref. your comprehensive report. I have been praying this morning – and prayer of course continues for Kerry’s strength – and success. It sounds as though she has great reserves – and we pray that her reserves may continue.
    John

  14. Tanya November 19, 2011 at 4:08 pm #

    Thank you Kim for keeping us all so fantastically updated.
    Just wanted to let you know some positive news that I heard from my step brother today who had a lung transport at Harefield about 3 years ago.( It’s a bit too long to text to mum or dad.)
    He said he was at Harefield for a check up a couple of weeks ago and met a young man of 22 who had just had a lung transplant and was up and about within a couple of weeks! He said they semed to be doing more ops than when he was on the waiting list, with good success rates. So although it must be incredibly hard for all the family, keep positive and we’ll keep praying for those new lungs!
    Please pass our love on to Kerry.
    Love to you all
    Tanya Tim and the girls x

  15. Mark W November 20, 2011 at 1:59 am #

    Hoping that things work out for you and that lungs become available to you soon.
    May God shine his light upon your hopes and dreams
    You and your family are in my prayers.

  16. Caroline H November 21, 2011 at 9:43 pm #

    Dearest Kerry,

    My goodness, you have been so much in the past week – you are the only girl I know who could have got through all that – you are an inspiration! You go girl. We just wanted you to know that we are thinking of you and praying for you. We miss you so much and send you all our love,

    Love you
    Caroline, Max and Raffaella
    xxx

    ps: thanks to Kim for keeping us so well informed x

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