Transplant

Where do I start, 47 and feel like I have been given a death sentence today. As previously posted I have a few things wrong with me including emphysema bronchiectasis high pressure in lungs then got diagnosed with mitral stenosis but was told today that it's just not one valve it's two plus leaking heart. Went for appointment with heart surgeon n now it looks like I might not be fit for surgery so it could be transplant. I have cried all day I am so scared. I've done everything they've told me to do and the way he was talking today he gave me little hope. Have been on steroids n antibiotics for a month n feel the best I've felt in ages, not using my nebs nor my blue inhaler just my anora once a day. So how can I be so ill and if I'm that ill why am. I not in hospital. I am a wreck crying scared petrified I do not want to die I want to fight this but how can I fight something I can't control. I think I'm losing the plot I don't know what to do or how to come to terms with everything. I'm trying to be positive but as each positive thought comes in half a dozen negative come in. I really need some sort of advice help or friend I'm totally lost and can't keep crying to my family and friends my two daughters and son have had enough misery sadness and pain. Sorry for the long post love Loretta xox

21 Replies
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Hi Loretta,sorry to hear your so low just want to say hello and I’m sure people will reply with some good advice soon.

I hope so my head is away with it xox thanku for taking the time to reply

Loretta xo

Your welcome xx nice to speak to you

We all need a bit of support and an extra friend at times xo

Hello Loretta.

First of all *HUG* YOU ARE NOT ALONE. I am waiting for a new lung in hopes of having not just a longer life but I believe a much more fulfilled one. I know it is very scary and all of it sounds horrendous. But I know when doctors talk about these things they always give the very worse possible outcomes, just to cover all the possibilities. You are 47. I will be 44 soon. According to my doctor at Tokyo University hospital, we are young enough to have a very good chance of surviving surgery and recovering well. Everyone I have spoken to post transplant have told me that although there are bumps, it was well worth it.

I am in a group on face book for pre transplant and post transplant patients. I read up on other people's experiences but also I learn that everyone's experience is unique to them. Please try not to take too much notice of statistics you read on the internet. There are people who are ten, fifteen even twenty years post transplant and are doing well. And most importantly living dreams they never had been able to realize pre transplant.

So, have faith in yourself. Have faith in your team. If you do go on the transplant list, you and your medical team will have to function as a unit.

I am here if you ever need to vent or just discuss things. We all are. It's okay to fall apart today. Tomorrow you can slowly put a piece back at a time.

You're braver than you believe, and stronger than you seem, believe in yourself. You can do this.

Much love,

Cas xx 🌿

Thank you so much for that lovely upbeat reply I am so scared I can't stop crying it feels like I'm on my own with no way out. I need to fight this but what can I fight. Don't know what is going on with my body don't understand what the doctors are saying, is it heart lung or both I need. I can't cope with all this and don't know where I'm getting the strength from to do it. How sad and pathetic am I feel useless and like I am on my way out awful feelings, but thank you cas so much

Loretta xo

First, don't fight. This is a process. It will take many stages, discussions, evaluations. You're trying to tackle it head on all at once. The doctors also need to do their assessments to decide which is the best course for you. This isn't the end. It's the beginning, so please remember a day at a time. Don't worry about tomorrow, be kind to yourself today. That means allowing yourself to be sad if you need to. And making sure you are well nourished and getting enough rest. Focus on getting yourself prepared for whatever is coming up. Surgery or not. xx πŸ€

P.S. You are neither pathetic nor sad. You are human. And we all get upset when things don't go well.

Thank you cas Im bewildered and lost at the moment, I have to try and believe this is for the best and it's going to be a positive thing it's getting my head space into that place much love Loretta xox

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Hello, llo1970- I think you''ve had some wonderful suggestions by some beautiful people. We don't ever meet one another (or very rarely), but this has grown to be my family. Keep close and enjoy the banter and silly jokes (mine are not silly, but brilliant). These people have become So important to my emotional state and I open this site before I read any other emails from friends and family. When I come on I learn and gain so much support. You in turn will share your experience and hope to others going through the dips of discomfort, anguish and fear. We care and love you.

xx

Thank you melly me we all need that extra support and friends that aren't necessarily close to hand much love Loretta xo

Oh Loretta I am so sorry darling..bad news is always a shock but as you said you have felt well before and you will again.

You have been given an option..you can always ask for a second opinion..take your time to consider things, when you are feeling stronger.

We are here for you πŸ’•

Thinking of you xx

Fran

Thank you I hope that wee spa break worked its magic on you.... Much love

Loretta xo

Small steps Loretta, one day at a time. This is all such a shock but try and think about doing better and getting all the help you need.

Sending gentle hugs and love to you. Xxx πŸ’–πŸ˜˜

Feels like Im at the end of the road but I really do need to shake this and try to get positive Im still breathing and whilst I'm breathing there's life there's hope just need my brain to start believing it much love Loretta xox

Also I hope everyone is doing good and keeping those bugs at bay......... Have a great weekend everyone

Loretta xox

xxxxxxxxxxxx

When transplant enters your life it is a huge shock, you are faced with your own mortality and it feels like a death sentence. The journey to transplant is long and there will be plenty of time to ask questions and get a better understanding of what you are facing. So right now don’t beat yourself up you will cope, you are strong but you may need to hide under the covers for a wee bit. Take care

I think hiding under the covers is a very good idea lol I've got that much wrong with me I don't know if there's any fixing just a mind full of questions...... This pulmonary hypertension is new to me along with everything else so think I need to start going on the positive train at some point soon all the best and thank you for your kind words xox

Loretta

oioi been there done that nearly poped me clogs then i got transplant me live changed i lead a almost normal life the tplant is not that bad the main thing is to try and keep a level of fitness i know that is hard but it makes tplant go so much smoother ie after you wake up as for crying etc well ya gonna i did felt so alone no one knew what is was going throu even my wife if there is anything you need to ask feel free i dont mind cus ive been there and had no one to ask

Arc thank you I am so glad that everything turned out brilliant for you. I have that much running around in my head it's like a constant ache. I'm still in the dream state where it's feels like this is happening to someone else I'm so scared and feel so useless then I get annoyed because I'm feeling sorry for myself.

Much love Loretta xox

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