Robs wound πŸ˜”

I have been going through 'stuff' - like you do in the new year πŸ˜€πŸ˜€πŸ˜€

And I have come across my lovely pictures showing how disastrous Robs wound was - I am trying very hard to 'move on' and I just thought that if I was able to share how awful it was then maybe it would help me come to terms with how horrendous it all was 😩😩😩 Obviously I can't post them publicly as they are far to graphic and quite yucky - just wondered if anyone would be interested in seeing them and helping me out ???? And maybe suggesting how I go about it without sending them all by email ???? ❀️❀️

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  • Sorry I'm a bit funny about that sort of thing. But I was just curious, are you talking about the scar after transplant? Is Rob doing OK now?

    I didn't take one photo in hospital, or the wound or anything.

  • Oh bless you xxxx no worries 😘😘😘 yes they sent Rob home to me after transplant with a 6cm open wound 😫😫😫 which then became infected very badly so he had it reopened !!!! And loosely stitched and left then they tried a vac dressing which didn't work then they tried loads of things until I said 'it needs packing' so ended up doing that for a few months then it started to heal but had channels underneath the healed tissue - then they didn't want to do anything until I had a 'screaming fit' at a surgeon who tried to tell me it looked great ????? When it was looking like poo and in nursey terms was not healing so he got big surgeon in who totally agreed with me so they reopened it all up again and sent him home the day after despite my crying and begging them not to - the district nurses didn't have a clue and were petrified of doing the dressings and often did them wrong so I ended up doing it until August when he had a large open hole above belly button 10cm x 5cm so they decided to do 'scar repair' and it now looks great - but it feels like I have PTSD - because of what I was forced to do 😭😭😭😭 still feels so raw - don't blame you for not wanting a look it is quite horrid but would love to have someone to tell about them and let them see what I had to do !!!!! Perhaps I am feeling a bit 'let down' and sorry for myself πŸ˜”πŸ˜”πŸ˜”πŸ˜” it doesn't last long tho πŸ˜…πŸ˜…πŸ˜…πŸ˜…πŸ˜…πŸ˜… xxxx

  • Sounds terrible. I was really lucky after my operation. Healed up well, after a couple of weeks all the tape and stuff was off. Fortunately no infections,

  • Hi Robswife

    I totally understand where you are coming from

    I am not squeamish. Been there done that and seen it all. If it helps you can send them to me. You need to scan them on to an EMail and then just send. You will need my email address but I will wait first to see if you are able to do it

    Best Wishes

  • I can forward the email that I sent to mellow1 xxxx thank you 😘😘😘😘😘❀️

  • Hi robswife, I've read many of your posts as well as the good advice you give others. I think you may have diagnosed yourself correctly when you say you think you have PTSD!! It sounds like you have had such a strain on you throughout robs illness, and that is bound to take its toll. You have been amazing by the sounds of things, and probably taken on way more than most would. This is the danger when coming from a nursing background because we know too much, but when its happening to a loved one you can't sit back and see things not done right and ignore it. It sounds like with the wound being that bad he should have been back on hospital, however being at home probably prevented nasty hospital infection and meant he was more comfortable and therefore healed quicker than it may have once they finally sorted it. All that happened because you fought his corner and that is exhausting. Not only physically nursing him, but the stress and worry of it all, then standing up to drs and others who think they know best.

    I really think you deserve medal, and a bloody good rest!! Nursing a sick partner has an effect on a relationship,it can change the dynamic and that can put a strain on aspects of your relationship which may also affect your ability to relax and get back to normality. Of course I don't know if this has happened in your situation, but I can see how it might. All this coupled with the fear of losing someone you love and yes I can see PTSD is very likely.

    Another odd thing that happens when we go through traumatic experiences that go on, is that when its all calmed down we strangely miss it??! I don't mean you want it back, or that you aren't happy its better, but I think the adrenaline and the way our brains are fully occupied in crisis times means that when that goes you experience an emptiness. I don't know if this is a recognised phenomenon, but in my experience it has been the case.

    As I said I don't know if anything I've said applies to you, but even if none of it rings true what is certain is that you have done an amazing job, and rob is very very lucky to have you. I think you need some you time. Maybe some counselling to help you get over all you have been through.

    I'm sure you are relied upon so much that its important you don't get Ill yourself, so its not selfish to spend some time thinking about how you can recover from all that's happened.

    I wish you all the best, and hope you get the rest and support you so obviously deserve. As a Sicky with an amazing husband I thank you, because I know how much he means to me, I'm sure rob feels the same.

    Best wishes and please take great care x x E x

  • Thank you 😘😘😘😘❀️❀️❀️ that made me cry in a good way xxxx and I totally understand all what you have said - I always feel like I am waiting for the next disaster 😧😧 - people are always telling me to 'move on' and 'let it go' - I really would love to but when I close my eyes all I see is bad stuff (and there was plenty more - not just the wound) - counselling was started but they kicked me out πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ I couldn't help but keep asking them 'how they were' and 'did they have a good week' - stupid I know but at 44 I have realised that's just the way I am 😒😒😒

  • Good Grief robswife that's appalling. good for you for standing up to the bully though. Some of these surgeons and senior doctors are right up them selves.

  • Hi Robswife, I had PTSD, too. I think its a great idea to share your story. Even if you never send it to anyone, just journaling the experience can be very helpful to help your brain process it all. As for the people who say to just move on and just let it go, you can't until you have processed everything. And you have a lot to process. At the time, I think the brain sets things aside to deal with it later because the brain has to deal with the situation right now. Now that the situation has passed, you have to process all that was set aside at the time. Its like playing catch up. For me, it took years (my trauma was very different though). But, I got through it and the nightmares stopped. Now I can close my eyes and see nothing but peace. You will too. It just takes time. (((hugs)))

  • You sound so brave. Rob must be so proud. I share your posts with my husband, who like you, is doing his utmost to take the greatest of care of me. I've not been good at all this week and matt has noticed. He tries not to show it but I know. I constantly apologise to him because he comes home so happy from a great day at work only to be faced with my moans of aches and pains. Matt often asks what pain I have but it varies all around my body. Just spent last few hours feeling as though I'm on my last legs!

    I would love nothing more than to share your photos. What wounds are they? Would you like to send them to my personal email?

    Thinking of you both

    X x

  • Thank you so much 😘😘😘😘 they are his transplant wound - and after xxx I would like someone else's opinion as to whether I am being a drama queen or if they think it is just as horrific as I do 😘😘😘😘

  • No such thing as a drama king\queen in this group!! My husband says its OK to email them to me. Shall I send my address? I really want to help and share with you. I just getting over PTSD myself. Due to other circumstances. Lots of CBT, frustration, tears, anger.

    They say we were put on this earth for a lesson . . . what lesson are all of us incl our family and friends being taught with this disease?

    X x

  • Yes please xxxxx

  • clarehutton17@gmail.com

    Look forward to hearing from you! Not sleepy at all for once!!!!!

    X x

  • Hi robs wife why wasn't the wound stapled ? Mine was stapled for 21 days then removed! Show me if you can '

  • I will try ?? Not sure if I can do a post with pics in ??? Or maybe email 😘😘😘😘

  • Just go to your email click on camara choose photo then send to me!!

  • Dear Robs Wife, I am sorry if my grief is going to make me sound harsh ...... but he is still with you....... he was lucky to get a transplant and you are both still together..... My husband is dead. I know i probably shouldn't still be roaming around on this forum but i can't stay away - it makes me still feel connected to him.

    However horrendous his wounds were they have improved - he is still alive

    I think I have PTSD and this is something I wrote just hours earlier on. i'm journaling away trying to make sense of everything i'm going through.

    ~~~~ I have this feeling. It's a feeling of no longer wanting to be alive or be able to bear this grief anymore but also not wanting to be dead either. It's a terrible feeling and it feels I am trapped without oxygen in this dark dark place - can't breathe - fighting for breath - emprisoned between two unbearable states. I try and find cracks of light and gaps for oxygen ( instinct of preservation I supppose) BUT all they do is offer me fleeting snippets of tantalising unreachable joy and which furthermore serve only to make me more fully aware of my sorrow.

    And I would give ANYTHING to hear that annoying alarm on his mobile phone for medication reminders and to have him back with me.

    Just be thankful for the present day - don't look back or dwell on the wound or the attitude of those treating it - it's done - just appreciate the present - tomorrow is promised to no one.

    Best Wishes,

  • God bless you

    X x

  • Oh Hun ❀️❀️❀️❀️ thank you and I totally appreciate what you are saying xxx I am so lucky he is still here - I am sorry πŸ˜”πŸ˜”πŸ˜” I forget sometimes that others have far worse than I do ❀️❀️❀️ I don't mean to be selfish and it's not often I have a 'day' where I feel so totally distraught - think after 4 years a lot has caught up with me and I have had a miserable sad reminiscing day but your right - I still have him here and I have to be strong ready for the next disaster/instalment xxxx

    I hope that you can find some peace ❀️❀️❀️❀️ big hugs xxxx

  • Liveronmymind,

    Its devastatingly sad to read your journal writings. I can not even begin to imagine what you are going through, but I can sympathise with you. I lost my sister to liver disease, she was 41, and died 2 weeks after we first found out she had cirrhosis. This was 2010, and I spend many nights tearful and going over all that happened. I know its a clichΓ© to say it, but it's true that time is a great healer. You have to allow yourself to go through the pain. Try and remember the good things, your love and memories of him keep him with you in your heart.

    I'm an atheist so won't offer those religious type reassurances, but I do believe in the strength of human kindness, so hope you are getting lots of support and love from friends and family.

    You have every right to continue on this forum, as long as its helping you. The site is here for support. It sounds like you and robswife both need support. You have very sadly not had a positive outcome, but you have both beem through terrible trauma. Others can take strength from reading of all of our experiences, or help us when times are hard. Neither of you should feel guilty about calling out for a chance to vent your feelings, fears,anxieties, pain etc.

    I really hope you get some counselling,or have some way of coping with life without your husband. Not just managing to get through life, but actually living it again, in a meaningful way. Obviously I don't know you nor did I know your husband, but I can be fairly certain he would want you to have a happy, fulfilled life. You are still here, that may not 'feel' right now, but the best way to fight death is to do your best to live life!?

    With all my very best wishes

    E x

  • I do not have the words. I feel your place, and welcome the reality of you still being here on the forum. If it helps you in only the tiniest way, I encourage you to stay with us. I (as I am sure many of us do) reflect on the alternative to surviving, and from the statistics you are not alone, where are the others? I wonder if there is merit in you seeking out some of those in the same position as yourself, who have lost loved ones, in the most harrowing circumstances. to have lived and loved is something that can not be taken away, cherish your memories. I send my love. X

  • I am so sorry for your loss. You should stay on this forum for as long as you like. As the one 'being cared for', it is posts/replies from you, robs wife, pear shaped, etc, that make me realise how lucky I am to have a very caring husband and what he must have gone through when 3 years ago my prognosis was not looking good. Take care, Anne XX

  • Oh honey. Thank you so much for forwarding them. I can not describe how I felt. Not surprised with you having trauma. Please ask me anything now that I have seen. How's rob now?

    I LOVED the last one . . . reminded me of me and my husband.

    I'm still awake! Hubby in the land of nod leaving the darts on TV . . . nice! Not! Lol.

    We send our very best wishes

    X x

  • Hi! How are you and Rob today?

    X x

  • Morning 😘😘😘

    All seems ok πŸ˜‚πŸ˜‚ can never tell - what starts as a normal day can often end up a disaster xxxxx

    How are you ?? And hubby - what are the plans for you 😘😘😘😘😘

    I am hoping that today is a fab day as we are going to Birmingham to watch FA cup match against AFCB πŸ’πŸ’πŸ’πŸ’πŸ’ first away game for years πŸ˜…πŸ˜…πŸ˜…πŸ˜…

    Love n hugs ❀️❀️❀️

  • I feel so much for people who have lost loved ones through liver disease. .it is heartbreaking. .also the ones that go through very traumatic experiences with a loved one that has had a liver transplant. .it is one hell of a journey!

    I went through that 3 times with my hub and as he had 3 liver transplants over 7 yrs..open wounds was a massive problem after so much surgery so understand Robswife..it is terrible that she had to endure all of this!

    We all have our horror stories in this awful disease but many of us partners or carer's are left to pick up the pieces

    Not an easy task by far!

  • Hi RobswifeI have just seen your profile and realise Rob is with King's. Is his Liver Sugeon a Professor? I do not know what a transplant scar should look like. I have a large L shaped scar from Liver C because I had HCV caused by a 14 pint blood transfusion a week after childbirth when they did not test blood.

    If you would like more support I am happy to swap emails. XX

  • Hello 😘😘😘 keep forgetting your in B'town 😎😎 I live in Throop/Muscliff area - right near Muscliff school and the fields πŸ˜…πŸ˜…πŸ˜…πŸ˜… and it's a right miserable old day today ☁️☁️☁️☁️

    Do you go to RBH ?? Who do you see xxx (probably had this conversation before but my brain is totally frazzled 😩😩)

    Rob starts treatment for Hep C tomorrow πŸ˜«πŸ˜…πŸ˜«πŸ˜…πŸ˜«πŸ˜…πŸ˜« I am getting myself into a right old pickle about it 😧😧😧😧 my email is allensimone138@gmail.com or if you have a mighty iPhone (can't live without mine πŸ˜†πŸ˜†) what's app is fab for sending pics (and it's free) 07427 187678 - hope you are having a good day ❀️😘😘😘😘😘

  • Hope Rob is managing on the Hep C treatment and that you are doing ok - Please don't stay as 'hidden'! xxxx

  • I think she has deleted her profile. When you do that your posts will remain but as 'hidden' unless she deletes them individually herself. Her profile has been deleted and according to the forum terms and conditions she cannot rejoin with the same profile, it would have be done with a different pseudonym. A shame, as she is a wealth of knowledge. Perhaps mellow1 is in contact via private email and can persuade her back.

  • You can still 'browse' this community and see posts without being a member, so even people who have 'left' can still read what we post. Just not post themselves.

  • Hope so, it really is a shame - like yourself she IS an absolute wealth of knowledge and experience and it's people like yourselves and many others too!) who are the pillars of this forum. ( great answers to ZABohra's queries that you gave)I will also miss her colourful emoticon style!

    Come back Rob's Wife if your'e reading this! We Love and Support You!

  • She has left her email and contact details public in her post, above, so anyone here who would like to can probably contact her direct, with or without feedback from this forum. 😍😍😍😍 ( for anyone missing the emoticons)

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