Feeling a bit Hopeless

[mary1956]

I have been on the lung transplant list for 18 months. I had one dry run 4 months ago, but I am wondering if I will ever get the call. Transplants are low, party because of Covid and only 30% of people on the list received a transplant in the year up to March, according to latest statistics.

This has all seemed far worse since a friend, who had the same condition as me, sadly died last week, despite receiving her transplant a year before. The transplant did not help her and rejection happened very quickly.

I’m feeling such a burden on my husband as I can do very little. My SAT’s plummet to 61% after just a few steps, despite 24 hour oxygen. Every day I struggle more. Friends are very supportive, which helps. Luckily I can chat to them, My siblings either avoid me or tell me to stay positive.

It’s just becoming harder and harder to do this when every day is such a battle and seems pointless.

Sorry for such a negative post.

[CDPO16]

Totally understandable Mary. If nothing else I hope it helped a little to come here to offload. Sending you a hug and my best wishes, Carole xx

[mary1956 in reply to CDPO16]

Thank you, off loading does help. Appreciate your reply.

[CDPO16 in reply to mary1956]

Offloading here is a relief for many of us Mary, it's one of the great things about the forum and the understanding of fellow members. Reading through your post and replies this morning I'm glad that you are in better spirits. xx

[sassy59]

You’re not being negative Mary, just telling it like it is. It’s hard to be on the transplant list and even harder to lose a friend after transplant. I’m sending you hugs and good vibes. Take care. Xxx👍😘🤗

[mary1956 in reply to sassy59]

Feeling loads better, greatly helped by all the positivity coming my way from this great group. Many thanks.

[Hidden]

I’m glad you chose a photo of yourself, Mary, I assume it’s you, because it shows us what a happy cheerful person you usually are. 🙂 I think you are suffering from guilt for not being able to do what you’ve always done. Well no one expects it of you now because you are poorly and your family are very worried about you. Taking about being a burden on your husband is a bit silly if you think about it after raising a family and making a home. Time to relax, Mary and concentrate on the ‘now’ and not what might or might not happen in the future enjoy your family who don’t know what to say to you to help.

[mary1956 in reply to Hidden]

You are so right, the photo is of who I am most of the time. Feeling so down and negative is not nice. Focussing on all the positives is my intention. Thanks for your thoughtful reply.

[Damon1864 Volunteer]

Hi Mary it's ok to feel like this I think we may all go through it at one time or another. Please try to stay positive we be are all here for you. Have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx

[mary1956 in reply to Damon1864]

Thank you so much. It is wonderful to get such lovely feedback. The sun is smiling today, so am I. X

[Katinka46]

So sorry to hear your story. And the loss of your friend makes it so much worse. There is not much that we can do except listen, and offer virtual e-hugs. But please come on here and have a moan. I am glad about the support you get from your friends and sad that your siblings can’t do the same. Love

Kate xxx

[mary1956 in reply to Katinka46]

Thank you Kate, I think the sudden loss of my friend has really affected me as I could say anything to her as we had exactly the same condition. Grieving on top of coping with feeling very poorly just suddenly became too much.

Feeling better, thanks to this group.

[Caspiana]

Hello Mary, 😊👋

No, not pointless. Every day you are still alive brings you one day closer to your transplant. You are bound to feel a bit down because waiting for something you think is going to change your life for the better is very hard indeed. Please do not forget today is AS important as the day after you get your transplant. There are no guarantees but this is the best shot you have at living beyond your prognosis. Even though it feels so hard to do. During the twenty seven months I waited I lost two close friends one was waiting for transplant and the other was denied transplant. Believe me, we are the lucky ones. When I felt like I had enough I used to literally slap myself and tell myself to get a grip. I had reached a place many others can only dream of.

It's very hard but keep moving slowly, whatever you do, don't stop. Do not stop living and enjoying your life even now. An absence of action does not mean things are not moving in your direction. It is all about timing and the perfect time to act in the right way and for your good. It is all in hand , you just can't see it. Believe you can because you definitely can do this. *HUGS* xx 🌿

[Katinka46 in reply to Caspiana]

Dear Cas, wonderful wise words from someone who has been there.Love and hugs

K xx

[Caspiana in reply to Katinka46]

I could do with taking my own advice sometimes. Thank you Kate . *BIG HUG* xx ❤️

[mary1956 in reply to Caspiana]

Thank you. My reply to you hasn’t appeared, but I just wanted to say thank you for your thoughtful and well judged comments. You always manage to strike the right balance and understand. Many thanks.

[Lemon7]

Sending you best wishes. When we marry our partners we say in sickness and in health. Good times or bad we are there to support one another. Bet you have done it for friends and family. Don't think that you are a burden. You are a wife, sibling etc etc and worthy of support and care, like everyone. Hope you get some help from sharing concerns on this site.

[mary1956 in reply to Lemon7]

I get so much help from this group and I feel blessed to be part of it. Thank you. I was feeling very sorry for myself when I wrote it, but have regrouped. Thank you.

[johnderby]

Hi Mary. No need to apologise to us for putting down in writing how you feel. That is what we are all here for. It must be dreadful all the waiting and not knowing when the call will come. There are people on here who have had the transplant are doing really well, I am sure that one of them will reach out to you. In the meantime please do post whenever you are feeling down. Thinking of you. John 😀

[mary1956 in reply to johnderby]

Thank you. I’m seizing today with renews positivity as all the advise I’ve received has been so helpful. Many thanks for your kindness and understanding.

[Tykelady]

That's not a negative post. It's an honest post and no wonder. I would love to have some words of wisdom for you but can only send love and good wishes.

[mary1956 in reply to Tykelady]

Thank you. Your reply helps so much. I truly appreciate it.

[Mavary]

Hi Mary. I know of someone who had hours to live before given a lung transplant. So don’t give up. At least you are on the list. Many aren’t.

[mary1956 in reply to Mavary]

You are so right and I must stay positive that I will get the call. Being off the list would be so much worse.

[Susan1200 in reply to mary1956]

Oh dear mary1956,chin up ,stay positive, it's understandable how you feel, it's definitely something to look forward ,In the mean time I shall be praying 🙏🏼 for you. Take care🐴🐘🦄🐞and all the very best to you. 🍀☘

[Digger0]

Totally understand. On as positive note, I had this from a friend not long ago! "I know it does not help you but my son was the longest surviving heart/lung transplant in the world when he died three years ago (in Guiness Book of records) He had a transplant when he was 20 and a kidney transplant 3 - 4 years later, He was born with only three chambers to his heart which eventually wore out his lungs. He was a very sickly child. We were originally told he would not live until he reached his teens. He went to main stream school and worked all his life for BHS. Many hospitalisations and buckets of tablets. He was 53 when he died I was proud to call him my son. " The cartoon is just to cheer you up. xxxx

Dog inside with glass door open and cat outside thinking door is closed

[mary1956]

What a lovely positive post, thank you. Re the cartoon, I’m the cat today, yesterday I was the dog!

[Beachballs]

Hi Mary 1956 , hope today is a better day , Please keep going, at least your in with a chance, wasn’t lucky enough to get that chance after 2 attempts at trying to get on the list. Can understand your grief at the passing of your friend, it does knock you, but in situations like that I have to tell myself, we are all different. I am also on oxygen 24-7 with Sats dropping to 61-71 after a few steps, so can understand. Hope you get your transplant soon , good luck and keep going! 🌷x

[mary1956 in reply to Beachballs]

Hi, thank you. You are so right. I am lucky to be on the list and I least I have a shot at getting some. Earlier I was thinking how much worse it is if being on the list is not an option. I’m sorry that is your case.Thank you for your reply.

[skischool]

I can't think of anything useful to say that hasn't already been said Mary so I am just sending you an extra breath,I don't have many of them left but because you are a special person (your family told me that)you can have it for free. 🙂Best wishes Skis and Scruffs 🙃😻x

[mary1956 in reply to skischool]

Thank you, that is a very special breath as it’s full of hope and oxygen.Feeling loads better today, perspective is back.

Such support from you all.

[Karenanne61]

Just sending hugs. 🫂🙂

[mary1956 in reply to Karenanne61]

Thank you, sometimes a hug is all you need. Greatly appreciated that it is Covid safe.

[jackdup]

It isn’t a negative post to tell us how you are feeling and you have a right to feel the way you do as you have way more on your plate than anyone should have. I pray you will get some news on a transplant soon. I suspect your husband is fine with the “burden” and suspect what bothers him most is there is little he can do to help you and it must be difficult to watch you suffer.

[mary1956 in reply to jackdup]

You are so right. I have been feeling loads better today. This site really helped. Thank you for being so helpful

[Biofreak]

Sorry I have only just read your post Mary. I just wanted to say that it's totally understandable how you're feeling but don't ever think you are a burden to your family. All they want, like you, is for you to be given the chance of a transplant. I have looked after my husband non stop since before he was given his diagnosis of IPF in September last year and he was already Stage 4 on diagnosis. I didn't for a minute think he was a burden, hard work but never a burden. On oxygen 24/7 and spent 2 weeks in a hospice in April this year. He was on the transplant list but as time goes by he had the same thoughts as you, that it may never happen. However in the early hours of 29/6 he got the call. I've never moved so fast. To cut a long story short he had his transplant and he is still here. It's not plain sailing by any means after transplant but he is infinitely better than he was before and can walk upstairs without oxygen. In fact he no longer needs it. Don't give up hope. Your family loves you and hope, sometimes, is enough to see you through. You will be in my prayers xx

[mary1956 in reply to Biofreak]

Thank you so much. It is lovely to read that somebody has had a transplant and is getting there. It is the uncertainty that is hard to cope with. I will try to stay positive and believe the call will come.Good luck with your onward journey and congratulations to your husband on his new life.

[Biofreak in reply to mary1956]

I have been thinking about you Mary since you said you had been placed on the transplant list and I remember the dry run. During the time my husband was in hospital ( a period of 4 weeks), there was 1 lung transplant and a heart transplant as well as him. Obviously I am trying to give you hope but all 3 transplants were successful. Keep your chin up Mary we are all rooting for you. Xx😘

[mary1956 in reply to Biofreak]

Thank you. I do have an appointment at Harefield on the 19th, so I hope that will help. So kind of you to have me in your thoughts.