Apologies for the radio silence for the best part of six months. I never intended to leave it this long before updating you all but life (and a certain little miss) got in the way!
Cassie Jean Jackson came kicking and screaming in to the world at 8.28 am on Monday 16th October last year and life hasn't really been the same since! Lots of sleepless nights trying to get to grips with everything and a difficult delivery which left Lauren feeling very poorly but I'm delighted to say that all three of us are doing really, really well
After much deliberation, I decided to take time off the lung transplant list to make sure that I was around for the birth which was just as well as it wasn't the easiest. The first few weeks were tough, too, but absolutely precious and I'm delighted that I was able to enjoy Cassie's first Christmas without having to worry about whether the phone would ring or not to bring me in for the transplant.
I went back on the list at the beginning of the month and am ready and waiting for that call. However, it feels different now that Cassie has arrived. There's so much more at stake and getting my head around how we're going to cope if/when the call comes unnerves me a bit. I know we'll find a way but it's definitely added to the pressure and uncertainty. I didn't make the stress levels any easier by signing up for an intensive driving course (yes, I can't drive!) with the view of doing a test at the end of February. I haven't done badly with the lessons but I'm no natural and finding time to do any kind of practice in between the lessons has been nigh on impossible. This got me super stressed and so I made the decision to take away the pressure of the driving test at the end of February to do the learning at a more sedate pace. I've survived without being able to drive for 23 years so another few months isn't going to do any harm!
Lung wise things aren't too bad. I've only had one infection so far over the winter period (I think the doxycycline really helps with that) and at my last check-up the lung capacity hadn't dipped dramatically while my 6 minute walk test had improved along with my oxygen transfer so they were pretty pleased with me. I'm convinced that all the exercise plays a huge role in all this but it would be wrong to overlook the impact of the nintedanib, too, which certainly seems to have helped stem the flow. Hopefully, it'll buy me the time to get that transplant before my window closes.
I don't know how others that have been on the lung transplant list feel but I have definitely found that the mental side of things has got harder with time. For me, a lot of it is frustration tinged with fear that it might never happen. I feel like I've been treading water now for some time now and I've been getting a bit impatient. At the same time, I feel like I've lost a bit of my mojo having given up the job and living at home with my Dad, while beneficial in many ways, feels like a big step backwards when Lauren and I want to be moving forwards with our lives.
I had a bit of a tough couple of days a week or so ago but I've emerged out of the other side now with a renewed enthusiasm. Having waited this long, I just have to hold my nerve and remember that it will all be worth it in the long run. The transplant is my only ticket to getting elements of my old life back and giving me the opportunity to do things like take Cassie swimming or get a plane somewhere without fear or limitation. That's why I'm on the list.
In the meantime, I'm finding time to exercise again - easier said than done with a three month old - and I've started putting feelers out for possible volunteering opportunities to help support Asthma and Lung UK and Blood Cancer UK.
This year will mark 20 years since my lifesaving stem cell transplant so I want to mark that with a fundraising and awareness event befitting the occasion. I also turn 40, have a driving test to pass and an amazing, beautiful daughter to raise. So lots to look forwards to with or without the transplant.
I hope everyone is well and thanks again for all the messages and the support. Tricky times still lie ahead but they'll all be worth it if in the end I'm sure.
Lots of love and respect to everyone as always,
Andy
Written by
dodgylungrunner
British Lung Foundation
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What a lovely photo and welcome to the world beautiful Cassie. Many congratulations to you all and a big hug too especially for Lauren. You have a busy year ahead Andy but I just know things will work out well for you. Keep your mojo going and enjoy being the lovely family that you are.
We’re hoping this year will be better than last year and staying positive.
Lots of love and hugs, Carole xxx ❤️🩷🤗🤗🤗
P.S. hoping your 40th birthday and driving test go well. 🤞🏼🎉🎁🎊
Hi Andy, it is so good to hear from you and the lovely photo of you with baby Cassie. We can certainly see whose daddy you are. It's all in the eyes!You have certainly had a lot of thinking to do but it seems that the positive aspects of having the transplant seems to be winning. After all we have Cas as a wonderful example of how a successfull transplant can give one back a truly full life. Now that you have Cassie I guess that this weighs heavy with you. You have always been so balanced and sensible in your approach and in doing the right things to keep yourself healthy. Good luck. Now that you are back on the list I do hope that it comes soon. Do please keep us up to date and more pics of dear little Cassie.
so good to hear from you & with such a positive post. Congratulations on the birth of your daughter… she will be a great distraction from all the lung stuff!!
Wow what an absolutely beautiful baby girl she is! Heartfelt congratulations to you and your partner, it's wonderful news and I'm so glad you're back on the list. Did you see Caspiana's 4 years post yesterday?
Thanks so much for sharing all your news Andy - especially when you've got lots of memories to create. Wonderful 👏 👏 👏 👏
Many congratulations on your beautiful baby girl, with lots to look forward to for the future grab it with both hands and live your best life whatever is coming your way
Congratulations to you and Lauren on the birth of your beautiful daughter. She looks like a feminine version of you. I hope the good things you are hoping for arrive soon- the transplant and a driving licence. And that you manage to fit in some exercise, apart from the lifting, bending and stretching that caring for a baby requires. You won't need weights! Best wishes. xxxx
This is a lovely post Andy and a beautiful photo of you and Cassie. What a full life you are living at the moment such alot going on. I am sure this year will prove to be one of your best, so celebrate your 40th and good luck with the driving test x
Congratulations! and welcome to Cassie.Sounds like Yr doing great.at least living with dad+ not working,you can concentrate on you, and Yr family,keeping fit to b in best shape for transplant.gd luck with driving test,it'll give u more freedom & independence.hope u soon get the call that proves to be the one.all the very best to you xxx
Hi, so lovely to hear all the positive things that you have in your life at the moment, good to hear your doing ok & back on the list, congratulations on the beautiful baby girl, onwards & upwards now for you & your little family, fingers crossed your not too long waiting for the transplant, good luck for the future & the upcoming surgery, keep us posted on how things progress, 😊👍🏻🌹🌺💐
Hi Andy What a gorgeous photo of yourself and Cassie. How proud you and Lauren must be. After an eventful last year let’s hope this one is better for you all. Good luck with the driving and the exercise regime. Hopefully your transplant won’t be too far away. 🤗🤗🤗🤗
CONGRATULATIONS on the birth of your gorgeous daughter 🥰 Good luck with your driving test & I hope you don’t have to wait too long for your transplant Andy
Congratulations on the birth of your beautiful daughter. It's so good to read your update and I must say you look extremely well in your photo, so whatever your doing, keep at it. I hope your transplant happens when your ready. Enjoy your lovely family and 🤞for your driving test. You take care. Love Shirley x
Hi Andy congratulations to you both on your beautiful daughter.
It was so lovely to hear read your story. I wish you very best of luck for your transplant when it happens, I hope you will keep us all updated. I have been passed to the transplant team to assess if I will be suitable so will read your progress with great interest.
Best of luck for your driving test and also happy 40th birthday when it comes
What a lovely photo. Many congratulations to you and Lauren for producing such a beautiful little girl. I hope Lauren is well and I’m glad you’re back on the transplant list. Life is for living and enjoying . Good luck with everything. Best wishes, Diane 😊
Hi Andy! How lovely to see your beautiful photo and read your update.
I'm sorry to hear that Lauren had such a tough time but memories of that will fade eventually (if they haven't already) and you'll both just focus on your beautiful little girl. She looks so much like you, doesn't she?
Your posts are always very balanced ie the good and the not so good, and I think that must be really helpful to others in a similar position. I can only imagine the stress of waiting for the phone to ring with the news that you might have a match and then the mixture of fear and elation that must follow.
I hope that when a match is found, it will be at the right time for you to accept it so that you can look forward to doing all the things with Cassie that you want to do.
Best wishes to you and Lauren, and love to baby Cassie. xx Moy
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