Feeling a bit deflated πŸ˜”

Hi everyone,

I hope people don't mind me having a bit of a rant and moan but I think some of you will totally understand.

I'm really struggling with falling into a natural "pattern" of being on the transplant list. I am an organised person and packed my bag and put in place things that I can like dog care, my twin boys school aware etc but I'm just finding it hard to "chill out"

I have only been on the list for 7 weeks and I'm sure in time it becomes easier. I just feel a bit down and tearful lately. I have my hubby and friends to talk to but don't know what's making me feel so low πŸ˜”

Health wise, still feeling pretty poorly last clinic my bilirubin hit an all time high of 203 and my INR is going up each month. I'm jaundiced, lacking energy and have constant pain to right side. I have pjs on by 8pm and laying on sofa. I try and stay as active as I can walking dog during day, still do school run, food shopping etc but do what I can physically manage.

I think the hardest thing at mo is knowing I could get my call at any time or in a few weeks/months or a years time. How you can go from the uncertainty of when it's time for my operation to thinking it could all be done and in recovery this time in 24 hours!!!!!

Believe me, I'm a positive person and trying to stay upbeat, happy and put it to back of my mind.

I'm so grateful I have been chosen to be on the waiting list for such a precious gift and I never ever forget that.

Has anyone else felt like this too or do

I need to just pull my "big girl brave pants" higher.

Much love to you all and sorry to moan Nicki πŸ’ž

17 Replies

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  • Yes it's hard!

    I didn't have to wait to long when I got on the list because I was put on priority and got the transplant within a month. However that came at a cost of being so ill that I started worrying that as the days went by I'd make it.

    My advice would be to take one day at a time, make sure you get out and take the dogs for a walk every day, look after yourself and just try to live your life whilst you wait. Although I didn't have long I did take the opportunity to try and get out for a coffee, cream tea or ice cream every day. In a way I made it into a not completely terrible experience.

  • Thank you for your reply Rodeojoe, walking my dog does help usually plugged into my iPhone listening to cheesey pop music 😍

    I guess I feel more uneasy in the evening when my phone rings later and my husband and I look at phone!

    I hope you are still recovering well. always nice to hear form everyone that these feelings are "normal". Much love Nicki πŸ’ž

  • Hello there, I think everyone here can appreciate the rollercoaster of emotions you are going through. I expect someone has mentioned this already but in case not, I,ve seen a few folk waiting for "the call" say that they find having a separate phone just for the transplant team helps. That way, their not jumping out of their skins every time the phone rings and so can chill out a little better. Hope you get the call soon. Best wishes, anne.

  • Hi tillycindy,

    Thank you for your reply. I usually jump up when the phone rings at night and it's PPI or the famous call to say about an accident I had recently or I've been lucky enough to win Β£500 πŸ˜‚ Luckily, I block those numbers. I've only had the co-ordinators ring twice for catch up and it comes up "unknown" or "no caller ID". A recognised number would be easier though. That is a good idea about having a different phone something I might think of doing.

    I sure I'll get myself into a calmer state and routine soon about the list. I am patient and know it's going to be a while before I get a call.

    Even my GP said the other day have the hospital gave me a rough idea how long the wait is......I know that there is no answer to that one.

    Much love. Nicki πŸ’ž

  • Hi Nicki

    Yes I can understand the uncertainty for you. Everyone who has been transplanted advises to do exactly what you are doing -keeping active as possible.

    My husband has been on the list one week and it's a strange feeling of not being in control of your future -he was told to expect a long wait as he not as unwell as some. But it makes you think almost is it better to be more poorly to speed up the list! Like you say though thank goodness you are on the list. I imagine there are a lot of people wishing this. X

  • Binkatherine,

    Thank you for your reply. I know that I am very lucky to have been assessed and it was decided that I am in need of a liver transplant. My health has deteriorated over the past 10 years since I was diagnosed with my PBC. Thank goodness for this forum and people giving advice and support. I hope your husband does not have too long to wait.

    Much love to you both. Nicki πŸ’ž

  • Hi Nicki, I know exactly what you mean. I had almost a year of that, and it is really really hard, there's no getting away from it. I was too ill to do much at all and did get dispondent thinking it would never happen. Try to hang on to as much of your normal routine as you can, and believe you will get there. One thing I would say about the phone, whichever one you use, is don't let it out of your sight. I missed two catch up calls from the coordinators for silly reasons like being in the shower, and they gave me one hell of a roasting after it happened the second time. I can't imagine how bad it would have felt to miss the important one when they had a liver. All the best, Chris.

  • Hi Chris,

    Thank you for your reply. I do walk around with my phone and make sure it's always charged and take it to bed too. Always have my hands free device enabled in the car. Even if I am in the shower, I will make sure my hubby or my boys know where my phone is too to listen out for it.

    Take care and much love. Nicki πŸ’ž

  • Hi nicki, really feel for you and understand exactly what you mean , there's no easy answer and it really is an emotional rollercoaster , I'm just over a year post transplant and I still jump when an unknown number calls , when I got the call it was a mobile number , take care nicki hope your call comes soon πŸ’žπŸŒΈ

  • Hi hun, funnily enough, I got a mobile number call this afternoon that I did not recognise and it was a marketing call 😑 So another one I blocked on my phone. Hope your keeping well. Much love. Nicki πŸ’ž

  • Hi nicki, I'm fine few issues here and there but nothing major, it's a weird thing being on the list you try to consciously not think about the phone but it means it's always there in your head, so emotionally draining, then when you do get the call it feels so unexpected, I got the call at 2 o'clock in the morning , look after yourself 😘

  • Glad your ok hunni. Im sure the call is going to come when I least expect it. A few people have advised me that it tends to come early hours of the morning so I go to bed thinking about it but am so knackered I'm soon fast asleep. πŸ’€πŸ’€πŸ’€

    You look after yourself too sweetie. Nicki πŸ’ž

  • Hi, I'm sure we all know how you feel, stay positive. Life will seem topsy turvy, I found sitting aside for five minutes just a little quite time helps. I hope all goes good for you..

    Es

  • Hi Nicki, Also got listed 7 weeks ago. Am feeling more tired. Walk dogs every day & love time with my 4 granddaughters!!! Try to take it Day by day! Keep strong the light at the end of the tunnel is getting brighter!

  • Hi ya Dorest123,

    I've replied to your most recent post and hope yr second call resulted in your transplant successfully going ahead? If you able to, be good to hear from you. Much love. Nicki πŸ’ž

  • hi there!

    all your feelings are natural and normal. I also like to be cheerful, and being organized is really the best you can do.

    You need to accept what is happening and go about your normal life.

    Often the first time they call it is not a good match..for whatever reason. Some people have been called in many times over..in fact, you should be more prepared for that than getting it the first time around.

    When they called me they straight away said we have a liver, but we don't know yet if its going to be the right one for you and they said it over and over for the next 12 hours.

    They found a blood clot somewhere in my donor and had to check that first in pathology.

    I am a rare blood type..A- so it was a miracle that the first one was actually put in.

    And not to upset you, because I have something very rare..I wish they WOULD have waited for the next organ..because now I have to get another LTX because the one I have is going to fail..I'm already having serious problems with it.

    SO! Trust me..you want the right liver, which may not be the first.

    Ive been in the hospital a few times since and seen people come in, ready to go, waiting, only to see them sent home.

    7 weeks is nothing..on the average its over 3 months and some people wait for years.

    Again, sorry..but just a reality check..

    Just know that crying, being scared, and fearful..all of it is normal.

    Your going through what we all do.

    And that's ok. You will get the call when you least expect it. Just keep your hospital bag packed and ready to go..Take your meds and do what the doctors say. Really, that's about all you can do.

    Good luck!

    Cheering you on!

    kimberly

  • Hi Kimberly

    Thank you for your reply and sorry to hear that you need to have another transplant and your liver is not working out for you πŸ˜”

    Your right, I would rather a false alarm or few to know I'm getting the best suited lover match for me it must be so difficult for you Hun πŸ˜”

    I have been much better past few days and trying to put it all to the back of my mind (if that's possible)!

    It's half term week so planned a couple of meet ups with friends for a cuppa tea and a harvester meal with my 3 closest friends weds afternoon.

    Went on a nice walk through the forest yesterday which was a little contradictory as yes - it gave me a bit more energy during the day but left me even more tired last night. Was good to blow away the cobwebs though in the fresh air.

    Keep us all posted on how you are and wishing you well.

    Much love. Njcki πŸ’ž

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