Thank you for all your messages of support, prayers, and for "Just being there".
We have had a rocky road for the past 2 + years, and now we can look forward to happier times.
I can never thank you all enough for your support , especially during the past two weeks.
To those of you who are religious and those who want to believe, the following will confirm that HE not only is but can, and wants to help us. We just need to have faith and believe in HIM.
Three months ago, when things were looking very grim for us, I went outdoors and asked GOD what will happen. Will Susan get her new lungs.
That same night at 1.30 AM I awoke, sat bolt upright in bed and received the answer, not in word, nor a dream, but coming from within. "Susan will get her new lungs and it will take 7 hours". I told Susan next morning about this and since that day I have not had any concerns about the future.
Well the surgery took 5 1/4 hours but due to complications post op the surgeon kept my wife in theatre for another 1 3/4 hours = 7 hours.
Susan will possibly be coming home tomorrow, albeit with a few health problems, some ,which we need to alter our life style to accommodate.
I cannot comprehend how my darling wife has stood up to all the challenges both with the surgery and the problems we have endured post Op. Susan has shown more courage, tenacity and a will power akin to that of the British Bulldog.Never backing down and meeting each challenge with an "I will beat this" attitude.
The next 12 weeks will see us re visiting the Alfred every Monday, Wednesday and Friday for check ups, blood testing and rehab exercises.
Please keep Susan in your prayers as her recovery will take up to 12 months.
We are more than happy to share our experience with any of you who may benefit from what we have learned.
We are just a keyboard away
Thank you all and may GOD bless us......... Sufferers and carers
The Wild Colonial Boy
Will
P.S Sorry about the pic, taken today, I cannot rotate it.
I've been thinking about you both and am so happy to hear you will soon have Susan home. I hope she gets a little better each day & the agony of the last couple of years is now firmly in the past. You have so much to look forward to 😃😀😀
in reply to
Thank you Hanne
This is what makes H.U so special.
We care for each other. Now if only those who lord it over us could show the same attitude and care This world would be a better place
Praise the Lord! I'm a believer, you both have been blessed, you, by the Lotd "speaking" to you and Susan by rec'vg the gift of life! It will be my honor to include both you and Susan in my prayers. God is good.
I remember many years ago talking to some "born again' CHRISTians who said that they had found GOD. I said to them, "HE has never been missing to me, but I am glad that HE has revealed HIMSElF to you"
Wow. What can I say except to wish you both so much happiness, good luck, good health and admiration for Susan's courage.
All the very best to you both.
Tee xxx
G'day Tee
Nice to hear from you. Many thanks for your kind words.
I need to ask, have you heard from Martine (MontyMillie) . I am becoming a little concerned. Last time we spoke she had moved back with her Mum and Dad. I have not seen her post for a while.
Will, about 4 weeks ago she (Martine) said she had an appointment on July 25th at the hospital to see if the pulmonary hypertension would be a Hendren to her receiving a long transplant. I have not heard from her since.
I think we are all concerned about Martine, Will, but have heard nothing. I am really hoping she got rushed in for a transplant....keep everything crossed for her.
It is so easy to become engrossed in your own sphere, and to sometimes forget that there are many souls out there still clinging on to the hope of a medical breakthrough or to receive that special phone call.
I have learned fast that with transplantation, comes a new set of rules and requirements post transplant. Life as we know it has changed, hopefully for the better, but, still with concerns about quality of life.
I am good thanks Will and Pete is not too bad at the moment. He will have a 3rd back op I'm September for the spinal cord stimulator lead and hopefully it will work. His breathing is good some days and not others but he has to pace himself.
You take care and hope Susan makes a good recovery. Thinking of you both. Xxxxxx
I am so pleased to hear from you as I have been praying for Susan's recovery after the operation and will continue to do so. What amazing skill God has given to the surgeons.
Yes you are right. First during the surgery and then when everything went pear shaped 5 days later.
I counted 14 Dr's and nurses going into Susan's room when the emergency was declared.
Two came to me to ensure that I was alright and I told them that Susan was in the best possible hands. They thought I meant themselves, and thanked me for trusting in them.
They could not see the 15th being in that room guiding the Dr's as they worked on Susan.
GOD Bless
Will
So very happy for you both. Susan is a beautiful woman and it will be a new life for you both. I know there is still much to do but feel and hope that everything is just right for the next stage. Love is a very powerful emotion Will - if it can move mountains then you have just done it.
Best of everything.
in reply to
Thanks Jennifer
I get so many nice comments about my darling wife, But the funniest was from a stranger who spoke to Susan recently asking was that her father with her.
No That is my old man (Husband).
I figured many, many, years ago that if I hooked a younger woman then she could look after me in my old age.
What the hell went wrong.
Susan is 65, looks like she is in her 40's, and as a matter of fact is celebrating her 16th year of being 49. Funny thing that, she kept telling our youngest that she was 29 for many years until Nicole (our youngest) cottoned on.
I guess the 10 year age gap has its benefits.
When we go shopping Susan keeps asking me if I have my hearing aids in. I have selective hearing at times.
And if she needs money, I give her 20 cents, well that was a lot of money when I was young.
Very pleased to hear from you, I've been thinking about you both and hoping that things were going well for you so l'm relieved to hear that they are. Susan looks amazing, hard to believe that she had major surgery just a couple of weeks ago. Hope she will continue to make steady progress over the coming months. Still in my thoughts and prayers - wishing you both all the very best.
Thanks Magpuss.
First problem occurred today
We were planning on a cruise in about 8 months.
Dr's reply. NO, cannot do that for at least 12 months.
Looks like we will be doing many day trips until then.
I'm really happy for you and Susan. I think it's been so uplifting for all of us. It's amazing how much you can care about people you've only 'met' in a virtual way, and who live in a place you'll never see or get to!!
It doesn't matter, Will, how long the recovery takes. Small steps in the right direction, side by side, together. You'll have your cruise.
Will, Susan looks very good and your love for her shines brightly.
I am happy to hear your report today as I’ve been a silent follower until now. I will continue to pray for Susan’s recovery through the weeks and months ahead. Also for continued strength and guidance for both of you along your new journey in life.
There is no greater power than that of our Lord. By faith, trust, and prayer we can know his will for us.
And if you will please include in your prayers the many thousands of sufferers out there still waiting, hoping and praying for that "Gift of Life" and also for those who make that heart wrenching decision to allow a part of their loved one to live on in a fellow human being.
Susan has said that '"with every breath I take, know it that a part of your loved one lives inside me" This is included in our letter of gratitude which will be sent to the donors family in due course.
Your words ring true about our creator.
I cannot comprehend how anyone can survive just one day without having HIM inside their heart.
Yes I will remember those in need and those who can decide to provide in my prayers.
Even in a time of great despair, we may have an opportunity to help others. I still remember a doctor’s look of surprise when shortly after my wife passed years ago if there was anything she could donate to help someone else. I don’t say this jokingly, but rather as an encouragement to others. We can possibly help so many others in need.
Up until that time I always thought what good are any of my worn out body parts to someone else? But we don’t know do we. The doctors will be able to decide. So I in turn registered as an organ and tissue donor.
You know I realized a few years ago that God gives us a perfect day, every new day we wake up. It is from there that we decide how it becomes!
Susan will be home tomorrow, the hospital could not complete all the tests today.
Organ / Tissue donation is still a long way from where it needs to be.
At the Alfred in 2015.... 64 donors gave organs to 254 souls in need of transplantation.
I was speaking to one of the transplant team last week and suggested the possibility of my organs, however at 75 years of age no, but he confirmed that in the future this may be acceptable. There is a lot of talk about giving organs to those in need beyond the 70 age group.
I am sure you are well aware that it is not the age that is at issue here. It is the state of the mind and body.
Transplantation takes so much out of a person, just looking at Susan, healthy (apart from her lungs) never smoked, always keeping fit and for the past 2 years exercised daily and had terrific muscle tone.
Watching my wife trying to walk 3 days later, all the strength gone, and I wondered how someone who was not as fit as Susan would possibly handle a major operation of this kind.
Thanks for your input mate, it is much appreciated
You have a beautiful wife you are so right she only looks in her forties. You continue to love her like you do, and I am sure the next twelve months will rush by.
As I am 10 years older, and possibly closer to moving my furniture upstairs, I hope the next 12 months is very slooooow. In fact if the good LORD sees fit I hope to have a long time left to have Susan beside me in all that I do.
Fingers are crossed for the decision that my darling wife is allowed to come home today (10 am here) and will not know for sure until late this arvo.
Things have not gone according to plan today.
Just spoke to Susan. The first test has been delayed. You know the one you eat the porridge looking mess and then have the test. Well, a part is missing from the machine, my poor wife has not eaten since 6pm last night and now hungry, has to wait. I think I may need my tin hat when I go in there today, not for me , but for the hospital staff. Still it will be good for someone else to "get it in the neck".
(Just joking) my wife really is the best sheila, GOD put on this earth (No offense to any females reading this). And yes I have had the lens in my eyes replaced, perfect vision, although after the surgery, things did look different. My wife is even more beautiful now. both inside and out.
I would not trade her even for a new fishing boat, well, not unless it came with a new motor, then I might be tempted.
Will,Susan has been given such a precious gift by a fellow human being I am sure all our family on here would agree that such a miracle can only be put in motion by the almighty.By the good Lords will,the incredible hard work carried out by all the medical staff,and your faith in God have all brought to fruition his glorious work.Thoughts and prayers are being sent to Susan for a problem free speedy recovery,may you both have courage,strength and love in abundance each and every day,you need to look after your self as well my friend as you are a pillar of strength right now and always will be.Take care God bless always naresh62x
She looks an absolute darling Will and, dare I say, a little mischievous twinkle in her eye. Taking one day at a time is the only thing you and Susan can do but I do feel strongly that the love you feel for each other will bring you both through these tough times ahead
All the very very best
JP xx
Thank you JP
You have me worried. "Twinkle in her eye"
I pray that the "tough times" will be nothing like pre surgery times.
Susan looks so beautiful and seems to have escaped the ravages that illness sometimes leaves on people's faces. I know it sounds like a cliche but she doesn't look remotely ill, let alone the serious condition she's been battling and the transplant.
It's so wonderful to hear that she's come out the other end of this ordeal and I'm sure she was greatly helped by your love and support.
Hoping that the transition from hospital to home will be as smooth as possible and that Susan keeps on defeating complications that arise.
Please update us occasionally about her condition.
Much love to you both.
G'day Billiejean
Your reply is much appreciated.
For obvious reasons I have only posted pics of Susan that resemble
the wife I love. Susan asked me to take photos of her journey, theses include some pretty confronting shots and others that would make the most hardened man shed a tear.
I will keep you posted with an update, possibly one month on, just do not to bombard you good folk.
Our God always has the most perfect timing! He heard your cries, and was ready for action. His placement was perfect.
I don't know a lot of your wife's story, I did read the day you received the call. And I can't imagine what the past few years have been like. May God continue to watch over her healing, and ease your family into these new lifestyle changes.
Our story is pretty much like that of the over 38,000 lung fibrosis sufferers in the UK, albeit every one with a different journey, but all on the same rocky road.
Susan has now moved from that road onto a speedway, nice and flat, with long straight stretches , interrupted by curves. We just need to slow down on these, deal with it and then move on.
We met up with a lady, in hospital last week, who was there due to an infection. In and out in a day.
This kind soul received "the gift of life" (new lungs) 19.. yes.. 19 years ago.
Very good news Will, thank you. Susan ll recover soon. But please, dont leave this forum, we ll need your help. I know i will have lots of questions soon when my husband ll be refered to transplant centre.
I am still waiting news from Martine. Xxx
G'day Mendy
Nice to hear from you. I trust everything is okay with you and your husband.
I cannot stress enough ( Here I go again on my soap box) PLEASE ensure that hubby exercise as much as he possibly can. Of all the things I have found, good muscle tone prior to Tx means a better recovery. It will also help you with any hurdles post op.
I have no intention of turning my back on "The family" here on H.U.
I joined this site to learn, share and experience life as seen by all the good folk here. On H.U, is my extended family. Where else would you find so many kind souls scattered around the world.
We have all laughed, shed a tear and told some pretty good yarns (Myself especially adding humor)
Hello Burraboy, your beautiful wife is in my prayers. I do believe in the power of prayer. Bless you both xxx
Thanks Christine
You really are a remarkable woman. Even in your time of grief and healing you still find time to reach out to others
GOD will have a special place for Richard.
Being a guitarist myself (Different style I have been playing The Shadows hits for over 50 years) I really enjoyed The video you posted of him playing Scarborough Fair. Brought back some really good memories.
Yes will...am so pleased she is coming home...being at home will help her heal soo much better as wonderful as the Alfred is.Am at the Alfed every morning for the next five weeks for radiotherapy for the prostate cancer..trouble is sometimes the appointments run late for various reasons.Am looking forward to this being over so can concentrate on the pulmonary issues...28% is not much to play with and cannot do as much exercise as I feel I should at moment because feel very exhausted with the treatment.....but I will succeed.
We are meant to meet up again so do not be concerned.
All fine Will..got your message ,got home and went to bed.Following message more relevant. I feel we were supposed to meet as we have and again we will when everything is when He has decided.
Hi Will, I guess you have brought Susan home by now. I'm so glad everything went well. I find it amazing, Susan is 65. She most definitely doesn't look it. Isn't 65 the oldest they'll do a lung transplant? Maybe that's here in the states. I just want to wish her a easy recovery and lots more smiles, like the one in the photo.Best wishes to both of you. 😊 Rubyxx
The first test today. Machinery parts missing. Delayed for 3 hours. Susan was not permitted to eat or drink from 6pm yesterday. Swallowed the porridge meal with the nuclear gunk in it for the test, but had to wait until 11.15 until they found the missing parts
Physio came in for exercise before giving all clear. Susan was still in lab waiting to do first test.
Diabetes Dr, did not turn up
So to make a long story longer I left the Alfred at 615pm with Susan still there.
Plan is to have all missed tests completed by 10.30am and then, finally my wife will come home.
Guess what!! Next day Back into the Alfred to start the rehab exercises every Mon Wed and Friday for the next 12 weeks.
That means on Tues, Thurs, Sat & Sunday I do not go in. Hooray
That is fantastic news Will & I hope her improvement carries on day to day. Wonderful story and thank you for sharing and for the update. All very best wishes to you both for the future (don't forget to pop in from time to time to tell us how things are going).
It does not matter whether you are a "newie" or an "Oldie" when you join this site you become a part of a world wide family.
Some are closet family whilst others are here waving and yelling. That is what makes us unique. We may never meet nor know each other's real name but just by typing away on our keyboard, I feel we are much closer than most others.
I have found after too many years of walking on this planet that when we speak, sometimes we put little thought into what we say, but when we have to actually type it, the real person becomes visible.
I am very happy she got the lung transplant and in spite of some difficulties is on the road to recovery and I will pray things will go well from here on.
You are certainly right and was something I never really have given a lot of thought. I think most of us suspect the hard part is the actual transplant and resulting shock to the body but I can certainly see your point about the road ahead and what you face with many potential issues.
Hi Burraboy so pleased to hear Susan is coming home, she looks amazing. It must have been a very traumatic time for you both. She will be in my prayers. Xx
Do you remember the "Footprints in the sand" story.
Well for us the past 2 weeks have been just that.
I let Jesus carry us both and that is why there was only one set of footprints in the sand. Even when things went pear shaped I knew HE was there and would guide the doctors in what needed to be done.
To two beautiful family's,Will and Susan and the donors family.I wish you health and happiness for many years to come.God bless you all.From down Under.
Hello Will,hoping Susan is having good days.Four seasons in one day sounds like the weather we are having here at the moment.The weather is all over the shop.The last couple of days have been real windy ,I want to get out and ride my horses.I nursed my mum she had ipf age 64,myself the whole copd.This site has so many beautiful people on here,sweet dreams to you both ,regards Sharon......
Thanks Sharon,
You have COPD?
Whilst it is not pleasant, many folk have lived with it for years and there some good reports of Cannibas oil having a marked improvement with some sufferers.
I have read on here of testimonials from some of the "family" how the oil has helped them. Maybe it could be worth looking into.
Do you know about the lung foundation of Australia, they have their H/Q in Queensland. Could be worthwhile joining them.
I am sorry about your Mother, IPF is really one nasty "Beast" of a disease.
We have a daughter living in Ingham, north of you, and she complains of being cold when the temp drops to 24c.
We have had a good weekend here, a little cool yesterday, but today the sun was out, jumpers were off and it felt good to have the sun on your back.
I know where Ingham is,it's a lovely place I have a cousin in cairns and one in Mackay,Christmas time I went up north I got as far as Yeppoon it's beautiful up that way.The days have been beautiful here the last couple of days.The weather man said rain is coming,we will see.Hows that lovely Lady off yours going?
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Big thank you (bottle update)
Venting update. 
An update on my wife. With a question...
Update-COPD emergency pack- what should be in it?
