Transplant and mental health

[Patchthomas]

I'm waiting on a heart transplant and been put on entresto aling with all my other meds but find my mental health deteriorating as though feeling better but due to lack of sleeping not got any quality of life help!!!

[Fluffybee]

Hi 👋

I cannot imagine for a second how you’re feeling right now, you must have so many emotions going on.

I wish I could do something/anything to make you feel better, but you’re in the right place for lots of support and kind words, talk anytime 😊

[Patchthomas in reply to Fluffybee]

I just feel so ungrateful ive been given these new drugs and although I feel better i feel such a waste of time so useless i was/am a landlady and was so busy all the time now i feel i do nothing useful x

[080311]

Hello as Fluffy says can’t imagine what you are going through, but we have a member who came out of hospital yesterday after their transplant.

We can be there for you listen when you need to talk or a shoulder to lean on.

Best wishes Pauline

[Patchthomas in reply to 080311]

Thank you i just feel so useless i was a/am a landlady and now I'm a waste of space

[Lovefrance in reply to Patchthomas]

Hi, so sorry to hear what you are going through. I had open heart surgery a good few years ago,I suffer with AF and have a pacemaker. I remember my surgeon telling me it’s just an everyday op for them. I know this probably won’t help much, but it did console me a bit. I am sure you will be absolutely fine. It’s the waiting that gets to you.Just think,after your op you will feel great. The anxiety is awful and most of us suffer with this. I do mindfulness, which helps me enormously. But I am a real worrier. Hope your op is soon and then as I say you will be a different person. Good luck. Please contact if you need someone to talk to.

[Qualipop in reply to Patchthomas]

No you are not a waste of space. You are naturally worried and probably depressed. Look on this as a temporary waiting time and talk to your doctor.

[Vicky12345678]

Patchthomas , sending all my best wishes. The waiting and anticipation is so hard! I hope Thanksnhs won't mind me tagging as may be able to offer some useful advice

[Sunnie2day]

I've read the entire discussion and most of all am struck by your repeated statement of feeling useless. You've been a very, very busy lady (you write you are a landlady) and lying about now has you feeling, to quote you, '...a waste of space...' - what a horrible way to feel about yourself!

(((HUGS))), you are NOT a waste of space, your body is going through a wobble and you have to pay attention to that so once you get your new heart you can get back to being the very busy lady you were!

Meanwhile, have you (don't roll your eyes, and don't laugh) considered taking up something like knitting, crochet, or hand sewing? While you're confined and restricted in activity, you could make yourself quite useful knitting/crocheting/hand sewing softies and things like bed socks, infant caps, going-home outfits - these things are always in high demand at hospitals and care homes (bed socks and 'lapghans' always very popular donations!).

I know it sounds trite - until you try it and discover you can be very useful indeed with the high value added bonus of boosting your mood as you knit/crochet/sew.

[jon22]

Hi,

If its an consolation my life has been up and down since my HA end of last year. With the worry of my health, what I should do about my stressful job, my father passing away, all the tablets I am now on, my sleeping has been very erratic through all the anxiety. Some nights I get no sleep at all and all the tossing and turning drives my understanding wife round the bend!

Struggling through the day after little sleep the night before I have had to get used too but I am hopeful that soon things will start to get better. I am very lucky to have an understanding, supportive and very patient wife !

I found CBT to be helpful so would suggest registering for this via your GP, however waiting lists are in my area are about 7 weeks so register asap.

Hope you are feeling better soon, but do come back to the forum for further help, advice, guidance and support.

[Fluffybee]

As sunniy2day says you do mention you feel useless etc a few times, you’re bound to have those sort of feelings as you need to look after yourself and rest, take this time to think of what you’d like to do when you’re feeling better.

Have you spoken to the BHF nurses who may have ways of how to cope with such a big thing in your life. They’re amazing, know exactly what you’re going through and how you’ll be feeling as they’ve seen people in your situation before.

Do you have close family or friends you can talk to or do you feel more like talking about how you really feel about things, I find it better talking to people I don’t know, even though I’ve found people on here who I’d consider my virtual friends, it means so much to have them here to talk to.

Look after yourself, lots of hugs 🤗

[Stu888]

youtu.be/67EwC4z2l18(Not working as expected?)

Hi, I cannot imagine your situation but have struggled myself with mental issues following a heart issue very minor compared to your situation.

I found that my anxiety was made much worse by lack of sleep. I tried everything but found sleep hypnosis to work best for me. I’ve attached a link above to a sleep hypnosis that I listen to every night In bed using in ear headphones. After doing this for several weeks I drop off listening about 50% of the time and have very few bad nights now.

If the link above does not work google “ sleep hypnosis for insomnia Michael Sealey YouTube” and the session lasting 30 mins 46 secs with an image of a gold weight On a pale blue background is the one that works for me.

I have found after doing this for 3 months that my mental health is much improved.

I wish you all the best. My uncle had a triple heart bypass and an aortic valve replacement last year and all went fine. Modern medical procedures are so much improved now.

[jon22 in reply to Stu888]

Thanks Stu, I will give this a try.

[Stu888 in reply to jon22]

Good luck! I think the trick is not focussing on not sleeping and distracting yourself which is where the hypnosis comes in. It may take a few weeks before it helps but it’s worth persevering.

[seasider18 in reply to Stu888]

Does it keep you asleep all night ? My problem is not getting to sleep but waking three times during the night and then having difficulty in getting back to sleep. I usually have three sleeps of about one and a half hours.

[Stu888 in reply to seasider18]

I sleep through myself but my Watch tells me that I wake up 5 or 6 times each night but am not aware. I think it is normal for people to fluctuate between deep sleep, REM sleep, Light sleep and wakefulness all night. All I can say is that it’s worth giving hypnosis a try and it may work for you.

[Thanksnhs]

Hi I was on entresto for about two years, but to be honest my heart failure was so bad nothing would have helped, I was on the routine list for two years and I struggled badly with mental health at times, I grudged anybody enjoying themselves because I couldn't, I fell out with everyone, as if it was there fault they were healthy, I think my problem was I refused to seek help telling all my Doctors I was absolutely fine and they never new there was anything wrong, I hit crisis point at the beginning of the year and that made me get the help that was there all the time, the transplant hospital has a psychiatrist who I could have spoke at any time, over the phone or at clinic appointments, and as it's primarily transplant patients he deals with he was excellent, I could kick myself for trying to do it alone, everything was so much better when I just admitted I needed help, and my nurses, cardiologist all new, and obviously didn't judge as I thought they would, the last seven months of my wait were a bit easier even though my health was going downhill rapidly, I managed to explain to my friends how I was feeling and things were so much better, sorry for the long reply but I think to seek help from the hospital straight away would have helped so much as they are there for you for everything not just physical health but mental as well, take care and I hope you get the call soon, char

[Ads568]

Hi Patchthomas,

I completely understand how you're feeling, it's only natural when everything we know and that's normal is pulled from under us. Have you considered accessing some professional help with your emotional state? I think it might help you, and should be available to you through your transplant team or your GP.

Are you on the active list, ie, waiting at home for a call, or are you in hospital on the urgent list? Either way, have you mentioned to your team about how you're feeling? These are not unusual feelings, I'm sure, and there is help/advice available, but if they don't know, they can't help.

Personally, I find it empowering to find out everything I can about what I'm facing, that way I can try to avoid any nasty surprises! But I know that isn't everyone's way of dealing with things and lots of people don't want to know the details, which is fine too.

I'm sure you can find a way through this mental challenge - the better state you're in before the op, both physically and mentally, the better all round. It's not always an easy road, but trust me, it's soooo worth it! You're a busy landlady, you must be used to conquering challenges, maybe just look at this as another hurdle that needs to be jumped in order to get to the other side and get back to doing what you do best!

You CAN do this Patchthomas! Look at what you've achieved in your life so far, and so much more yet to do. You've got this!

Wishing you all the best.

Adsterp

[IrisCarter]

I can empathise as I was also very active prior to my diagnosis/surgery and have similar feelings. I talk to the Heart Failure Nurses, the Cardiac Rehab team and online about my emotional state. I also think the prospect of a heart transplant must be an even heavier burden than my open heart surgery, MVR and HF.

I am trying to frame my loss of activities as an opportunity to do some of those things that I didn’t have time for when I was very busy. Depending on your spiritual outlook you could also think in terms of it being enough to be alive and enjoying every moment as precious. If you have a religious faith it can also be framed as God having put you where He wants you.

You have my best wishes anyway.

[Rosei]

When my son was 17 he was mentally tested to see how well he would accept heart and lungs, he had Cystic Fibrosis, heart and lungs were the last treatment of choice in the eighties. William was so happy waiting with great anticipation to be called, it was not to be as he died a few months later, so take your chance.

[Handel in reply to Rosei]

I'm so sorry for your loss Rosei. How brave of you to reply to Patchthomas. x

[32ford]

hi I was transplanted two years ago, before that I was in heart failure for thirteen years and was listed for three years. the wait is long and hard, entresto was like a light switch for me, i had heaps of energy suddenly and could walk again at a reasonable speed. Unfortunately it also put me into severe kidney failure. I'm not sure how it is in the uk but hearts are difficult to get in australia, so the wait is long. are you sleeping in a chair? that made a huge difference for me not waking up every half hour trying to breath. the best thing I found was walking, although it was hard I found that I have recovered much faster than the others who didn't get fit before transplant. I also found I had to make an effort to be happy I kind of had to get happy and the only was I found to do that was to get out of the house and walk, I was going to kill myself on my birthday and had it all planned but a heart came three days before my birthday. I still struggle with feeling guilty that I'm alive but my donor isn't. I probably have a thousand other things to tell you about but I cant think of them now