Hello everybody, I hope you don't mind me posting but I'm in need of some support I guess. My husband had a double lung transplant almost 2 years ago, he was diagnosed with COPD back in 2008 and slowly deteriorated until he had to go onto the waiting list. He was incredibly lucky and had his transplant only 5 months after being listed. We've had a very rocky 2 years due to rejection, infection and some nasty viruses so he's spent a great deal of time in hospital so its been tough, don't get me wrong, if he hadn't of had his transplant he probably wouldn't still be here so I'm very thankful but it has been difficult.
We have 2 young children so trying to balance family life, work, all the normal day to day things and having this hanging over us is taking its toll. At the start of this year it was looking as though we had turned a corner, his health was stable and we were planning on having a year of "normality". Then a couple of weeks ago he went back to the hospital for a check up and we've found out that now his new lungs are deteriorating due to a virus he has just before Christmas, we don't know timeframes yet but he's going back on the 28th April to run the same tests again so they can begin to build up a picture of how quickly/slowly the decline is happening, but ultimately he will probably have to be re-transplanted in I estimate 1 - 2 years. The thought of this terrifies us both. There are so many if's and but's. He was so lucky the first time round to receive a transplant so quickly, you see he has a rare blood group just to add to it! So when he was listed it was a case of "glass half empty - you are in for a long wait and might not get a transplant at all, glass half full - you are the only person on the list with this blood type, so if a match comes up, its yours". Luckily it was the latter.
But this time I can't help thinking that he can't be that lucky twice, also his body has already been through so much so going into it a second time he is so much weaker.
In terms of myself, i'm trying to hold it all together but its a struggle, over the past year or so I've started experiencing panic attacks and anxiety, I can no longer drive on the motorway (I was travelling daily to visit him when he was in Harefield which is up the M4 and M25 for us) and at the moment I don't feel very strong or brave. I know I have to be, I know I have to step up, we got through this once and we will do it again but at the moment I just want to bury my head in the sand.
I'm not really sure what I'm expecting anyone to say or do about it, I think I just need to try and get some of it out because my head feels like its going to explode.
I'm sorry for the long post, and if you have made it this far thank you so much for taking the time to read it. One thing I have learnt is everyone is fighting their own battle, and quite often the biggest smile hides the saddest feelings.
Best wishes
S x
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sophie0411
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Good morning Sophie, I've just read your post and wish I could reach out and put my arms around you. You've been through so much for so long and at this stage it must feel for both of you, like it's never going to end. I know a little of how your husband feels and that despair when things start to go downhill yet again. But for you, your own despair and grief is compounded by being the one who has to cope with the family, keep everything together and still try to be there for your husband.
It's a hard road for both of you Sophie. What help or support does the hospital offer ? They must have somebody or department for dealing with patient and family support. Please use any support you can get from family and friends.
Re-transplantation does happen and maybe next time he will have a better result. And thankfully, he's young enough to be offered this option.
Sending you loads of supportive vibes and healing energy. And a big hug.
Thank you so much for taking the time to respond, I am overwhelmed by the support on here and wish I found you all years ago! I burst into tears reading everyone's messages and it's definitely given me a boost. Thank you and I wish you all the best too X
How difficult for you both. My heart goes out to you. You will get through it, you have the children, and they will help you, just by being themselves. Banal it may be, but just take one step at at time.
Hi Sophie, There will be a number of people here who completely understand. The stress you undertake whilst your husband is seriously unwell, the need to continue "normal" family functions, thinking you have turned the corner and then being told that there will be a possibility of your husband having another lung transplant would be enough for any normal human being.
Life is a roller coaster of emotions. We have, over the last 4 years lost 5 siblings and one who is terminally ill. My husband was recently diagnosed with COPD and is suffering with depression due to these bereavements.
I Started to suffer panic attacks also so much so, that my fingertips broke out in blisters, heart pounding and felt physically sick. How can your body and mind deal with being bombarded all the time with bad news.
Your tired Sophie, but then you know that you need to go on. Do you have support, someone you can speak to. I had to go to the doctors and now on tablets which are helping enormously so I am able to continue. Believe you me when I say to you that you are not alone. Everyone experiences anxiety but you need help to get over this particular hill.
Go to the doctors, have a word, you will find that you will be able to function again..
And you are right Sophie, the biggest smile does hide the saddest feelings.
Hi J, thank you for taking the time to respond. I cannot believe what you have been through and are still going through, I have huge admiration for you and your strength. I have recently started counselling which is really helping (I denied it for ages so I got a good old "I told you so!" From my family) and I go to acupuncture and have lots of Rescue Remedy!! Finding this forum has been a big comfort to me so thank you so much xx
Good evening Sophie, I hope that you are feeling a little better today.
Sorry it has taken a number of hours to reply but was feeling a little tired.
How is Hubby?
I drove back yesterday from London via M11, (luckily not M25) and had to stop as the storm was really pelting down. You still get maniacs driving though so I hugged the inside lane.
We need to take it one day at a time Sophie. I am glad you are seeing someone. I also find that a strenuous walk kills a lot of frustration.
What are you getting up to with the children this weekend. I hear that the weather isn't too good so maybe some ten pin bowling should go down a treat.
Stay well Sophie
Jxx
G'day Sophie,
I am saddened to read of your husband's plight with possible rejection, but maybe my next paragraph will put your mind at some ease.
I know of an IPF sufferer who has had (4) four bilateral lung transplants, and he is doing well. The latest in January this year. Whilst things may seem grim at the moment, There is hope.
Please do not be dejected by the present difficulties,as you have your husband with you today, and GOD willing, he will be with you for a long time to come.
Hi Will, WOW 4!! That is incredible, I didn't even know that was possible! Thank you so much for responding, everyone on here has really given me a boost so thank you x
Hi Titchy, thank you for responding, I'm feeling more positive today, this place has really helped with everyone sharing experiences and giving support, I don't feel so alone and isolated now xx
sophie0411 I think your amazing to work through all you and your families going through and feel positive you should all be proud of yourselfs best wishes x
Dear Sophie, I'm feeling very humble after reading of your struggle with your poor husband. With young children involved it must be so much harder.
I'm sure the hospital will have some sort of family liaison support you could approach. It will be of great benefit for you to chat to people in the same situation as you.,
We will all be here for you if you need to chat & know that we'll all be with you every step of the way 💐
Hi Jessy, thank you for your reply, I've recently started counselling which is helping a lot and just putting down my true feelings on here and reading everyone's lovely messages of support has really helped too so thank you xx
Dear Sophie, you and your family really are going through it. I can only imagine how you are feeling, and hope that things can get better in time. If your Husband does have to have another transplant, hopefully all will go welll and he will get back to some sort of normality. You do seem to be carrying the greatest burden through all this, I hope you have some support from family and friends, and some help with the children.
If you need to chat about anything at all, we are all here for you, so please don't hesitate to ask.
Hi Christine, thank you so much for your reply, I'm feeling a bit better today and I've got some fighting spirit back, all of you on here have really boosted me and reading others stories makes me feel less alone so thank you xx
I must admit l read your post with tears in my eyes. You are certainly an amazing lady but how scary all this must be for you and your husband. I hope you get lots of support and help to make the right decisions.
Lots of love dear lady and be strong. You have friends here. Xxx
What an awful time you've been having! Just the strain of organising stuff, keeping things normal for the children and having to be positive when you are scared is enough to tip most people over the edge!
You're doing a great job, remember that but when it all feels too much, we're here. We're quite good at listening you know.
It's good to have you as part of the group, welcome xx
Hi, thank you so much for your reply, it's a huge comfort just meeting all of you and seeing everyone coping with their own battles. It's inspiring and has given me a big kick up the bum (which I needed!) thank you X
You need to tell your GP about your anxiety & panic attacks - there are medications to help, as well as counselling etc (unfortunately there is usually a long waiting list but due to your circumstances they may be able to fast-track you). You have been through so much & are a very brave lady but do get some help for yourself so that you can carry on supporting your husband & children. If you have any family/friends close to you please tell them how you're feeling as I'm sure they'll rally round to help in any way they can. All best wishes xx
Hi, thank you so much for your reply, I have started counselling which is a big help and luckily I have a very supportive family who keep me going. Thank you xx
Hi Sophie I'm so sorry to hear about all your problems you certainly do need support and I know you will get it here. I started having panic attacks after a bad infection last October. Something that helped me was Mindfulness. If you google - the free mindfulness project - you will find lots of helpful information. They also have free guided mindfulness for you to do. I hope this may help. xx
Hi Sophie have you got something to download an app onto? if so I will tell you another thing that helps me enormously. Let me know. I've looked at it on my laptop but I'm not sure about using it. xx
Hi Sophie it must be very hard for you and your family you have been through so much and I appreciate it must be very difficult for you all. I hope it helps to know that people are thinking of you.
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