Coping with what could have been

[Whip_pet]

My husband has recently been very ill and had a liver transplant which is working wonderfully. I can't stop thinking about what could have happened if he had not had the transplant. He had sepsis in March and almost died and was going downhill fast just before his transplant. I'm driving myself crazy. It's been such a stressful, emotional year and I am over the moon that thing's are going well now but I don't know how to cope with the emotions I am feeling... I watched a TV programme today about a guy who needed a heart transplant but was now too poorly to undergo the surgery. What would I have done if this had happened to my husband?! Am I going crazy?

[bleeny]

I've no experience of transplant I'm afraid but I think sometimes when you go through a period of intense stress you cope and cope, then when it is at an end you can feel quite low. It's almost as if the mind goes into a bit of a collapse where you reflect on what might have been, how it could have gone better, the fear you felt etc. I think the mind is just trying to process all that has happened. Be kind to yourself - you're not going crazy! Could you treat yourselves to something nice such as a weekend break? The feelings will pass - you've just been through a lot.

[Bevjohn27]

Hello there, my husband is almost 3 years post transplant and doing very well but I still experience some of the same feelings as you are having. I try to focus on all the positives of transplant and how well he is rather than what might have been but it is difficult to do sometimes. The current situation with Covid has added additional worry for me and trying to make sure I keep him safe and well.Take each day as it comes. Try to take up a new hobby or restart something you maybe used to do but had to stop because of your husband's illness. Talk to each other about how you both feel too as I am sure he is feeling overwhelmed also at the moment. It will get easier in time but if not maybe speak to your GP as you may need some professional advice. Take care xx

[Dogbot]

Hi there it’s a lot for anyone to go through, the worries and trauma of watching your husband go through the mill , my wife has been through it as I had the same and in March as well ,we recommend that you see your doctors because you could be going through PTSD . Good luck ,I haven’t had my transplant yet but have been called once hopefully the next time , try to concentrate on the good times you can now have with hubby 👍.Stay Safe All

Dogbot 🐶🌈

[Alyson84]

Hi I am 19 months post transplant, I think sometimes we forget how stressful and scary it was for our families, my husband constantly tells me be positive and be thankful for the gift I was given

He and my daughters and all family members were and are very supportive, even in the days I get down

I remind myself they also went through the trauma of the operation

Some days I have negative thoughts, then I reminded myself to be grateful for the chance to have more time on this earth with my loved ones

I think you are allowed the scared about the what ifs or what can happen, more importantly think about the here and now and take each day each blood test as it comes xxx

Enjoy the precious gift that was given to you both

Best of luck enjoy what you have now xxx

[Marnie22]

Hi. I agree with Dogbot, that you might have PTSD. I have experience of this myself. I just need to say that you need someone who knows about PTSD to do a proper assessment. If you then do need some therapy, it's really important that you are seen by a therapist with training and experience in trauma focused therapy, because standard counselling or therapy can actually make things worse. I have experience of that, too. If you want to know any more, please contact me.

Very best wishes.

[Jay986]

Psychology tells us that after life and death/life altering experience we often develop different manifestations of the stress. I think it’s somewhat normal questions to be asking but in Psychology once something becomes a burden on living it’s time to ask for help.

[TBSW]

Hi, I can relate, but my experience was first hand. Last April, my ESLD was nearing the when they were considering taking me off the transplant list. I'd been on the list almost a year, and I was very weak. At the time I was in hospital, and of course due to covid, visitors weren't allowed, so I had to digest the news alone, that if a liver wasn't found within the next month or so, I wouldn't survive. I wrote letters to my family for when I'd gone, and I planned my funeral. I'd resigned myself to dying, as the chance of receiving a liver was very slim, at that time. But then I got the call. Everything went ok and I was home a couple of weeks later, but I couldn't shake off the fact, I was still alive. I also felt guilty that my donor had died and I was alive, especially as she was a lot younger than me, it didn't seem fair. I got extremely depressed and even got to the point of thinking, that if I don't take my tablets this could all be over. Thankfully my feeling that I would have wasted such a precious gift, stopped me. It was then I started talking to my GP, and consultant about it. They diagnosed that I was suffering from PTSD, they suggested counselling but I talked to family and friends instead, which helped. I understand you didn't go through the operation yourself, but you went through all the same emotions and feelings. Please just take the time to review what has happened, and try and focus on the future and not the what it's, as believe me it will just eat away at you. I hope you have a good support network, if not please reach out either on here or to your GP.

[Pitmaster1]

Hi Kate you know where we are if you want to talk.

[Hidden]

You are all so strong and brave . Love to you all.Laura xx

[AyrshireK]

A question a good friend of mine asks often is "Who cares for the carers?" & it's true.

We loved ones go through the mill during the time of our partners ill health, we hold the fort, we care, we are left for god knows how long scared about whether that call will come in time or whether they'd even get listed and then sit at the end of the phone or outside a hospital ward wondering, scared stiff if they'll come out of surgery and be ok.

Every day is stressful though and we perservere, we stay strong, we cope.

We all need some stress in our lives but too much and repeatedly for months/years builds up and eventually we break and going through what you have has built up and built up and no wonder you have reached a point where it's too much.

They say that "Depression isn't a sign of weakness, it's a sign you have been strong for too long".

Get some help, who cares for the carers as my pal says? Your doctor should help with this because you need time and help to process what you've been through, your husband has had his journey and you've had yours which in some ways was even harder than his - he had everyone caring for him, attending to his every need whereas you were the one doing everything in your power to hold everything together.

Best wishes to you, I hope you get some help for YOU.

Love Katie x

[Ewife]

Hello! I can definately relate to this, you are not alone. We aren't even through the surgery yet....I wonder if I'm going through the mill now and it won't hit me so hard post surgery, or if I will have to go through it all again once my husband is finally transplanted???? 3 weeks ago my sister tragically lost her husband to a sudden, unexpected cardiac arrest. Of course, I've been there for her, but ive relived every single moment of the day I nearly lost my husband when his varices burst. I was in the same room at A and E that my husband was in 9 months before but with her, when they told her they couldn't do any more for her husband. My biggest fear happened to her, with me stood there right beside her. I am obviously seeking help now with counselling services but its made me realise that I had actually been dealing with grief over my husband too. I didnt know you could experience grief even when someone doesn't actually die. I think what you are experiencing is perfectly normal given the circumstances, and you will find such comfort and help speaking to professionals. It helps when they can explain all the emotions and feelings to you, stops you feeling so crazy!I hope you can get support and help,

Xx