Transplant Blues

Currarong, Australia's east coast.

Currarong on Australia’s east coast.

Barb, what’s it like to be dying?

A friend—a journalist—asked me this a while back. In another life, I too was in the news business so I  am not bothered by blunt Q&As. Quite refreshing. Cards on the table.

‘I’ll tell you when I know’, I told my friend.

I was, and I am, dying. I’m Stage 4 and there is no Stage 5. But, and this is a big but, I have embraced oxygen therapy which can bestow many more years of life.

Couple O2  with good diet, exercise, rest, and avoiding infections, and I believe I can make Stage 4  a long one.

In documenting my search for a good life with Copd, this blog has  already explored mindfulness, news blackouts, exercise, singing, the power of positive thinking, self-acceptance, euthanasia, forgiveness, assertiveness and gratitude.

OK, life with Copd is complicated. So can we ever get divorced, this lung disease and me?

Both my GP and  chest doctor have supported my decision to decline a lung transplant. (They would have equally supported a decision to go ahead).

So, why would I not accept the gift of life? For some it’s a no-brainer.

After due diligence, I concluded that a  lung transplant was not a magic bullet.

Only half those who get new lungs are alive five years on.

The surgery and recuperation are onerous, requiring one to pack up and go to the city for maybe the best part of a year. We have cats, chickens, a garden. My partner works part-time. How would we manage? And I might die on the operating table, or six months or a year later. We are weighing my very life: my 21 grams, as Hollywood would have us believe.

After a thorough  (and tiring) work-up, one must live in a state of readiness for ‘the call’.  Correct weight is maintained. Bags are packed. You know your second chance will begin with another’s death. You make peace with that. They let you write an anonymous letter to the donor’s family.  Your fate will align with another human being in a very mystical way. These are the kinds of  feverish  metaphysical musings that arise in the wee small hours when one is contemplating organ transplant.

Are you compatible?   You and the dead person. If not—rejection. It all comes down to rejection.  Like in  a relationship.

The new lungs come with a trunkful of medications to suppress your own immune system and to deal with the myriad problems that arise from having no immune system.

While lung transplant is a success for many satisfied customers, I have personally known others who are worse off after surgery. They are still in wheelchairs and on oxygen. Some say even with a successful transplant, you swap one disease for another. And then one day, your lungs falter and you meet your disease all over again . . .

In the end, it’s a philosophical, perhaps a spiritual decision. My close circle all expressed relief with our decision – yet they had seemed so supportive when I had wanted surgery. I realized they loved me enough to give me the dignity to freely choose.

Any lingering doubt was banished when I fell off my bicycle and broke my hip, my bones softened by Copd meds. I was treated  royally by the local hospital but it  showed me that I did not want another even more major medical adventure, or misadventure in the near future.

As Kenny Rogers sang, ‘You gotta know when to hold ’em, know when to fold ’em’, so I gambled on keeping the old lungs.   I gambled on staying home and enjoying the peace and beauty of where I live in a seaside village with steep coastal cliffs at my front door. There are acres of eucalypts that make the air piquant.  Wildflowers of blue, purple, yellow, orange and red  spring from the pristine heathland. Soft grey kangaroos flit by at dusk and overhead are my favourite birds, the Jurassic yellow-tailed black cockatoos—their spectral call announcing the rain is coming.  In  winter, you can pick out sprawling Scorpio and the Southern Cross in a clear,  twinkly sky.  Stars at night, birdsong in the morning. I would miss them if transplanted to the city for surgery and rehab.

Do I ever wonder ‘what  if’? Sometimes, when it is very hard going; when I am in the thrall of a raging four-week infection that is impervious to hardcore antibiotics, and as my fitness and optimism drain away,  I wonder if I did the right thing. It is in those moments I know all about dying.

To live close to nature, as I do, is to draw inspiration from it. So I see birds and mammals live and die without complaint; without respite.  The old spotted ringtail possum falls suddenly to the ground after a lifetime of leaping from tree to tree. They have no self-pity, the animals.   The day of their deaths is like any other. They seem to give it up easily in the end; to retreat and then let go, their spirits tumbling out of frail bodies, as I have seen happen many times.

When my mind and body are less feverish, I  can tell my friend I still can’t answer her question, but I like the way animals approach the whole business of dying, by just getting on with living.

  ♠    ♣    ♥    ♦

Kenny Rogers – The Gambler

 

 

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24 thoughts on “Transplant Blues

  1. Barbara, What a wonderful piece. When I was diagnosed a lung transplant wasn’t even an option given my prior medical history, so I have just kept walking forward and dealing with the outcome as a given. I thiink your decision, how you processed it, what influences you alllowed to have an impact all were considered in the proper way. Not that what I think matters in your decision, but I do applaud you for making that decision, and living your life to the fullest extent possible. Your thoughts and insight into the disease are wonderful, and again I am glad we crossed paths. Take care, Bill

    Liked by 1 person

  2. Hi Barb, the connection humans have to the cycle of nature seems so ignored in the city. A far better choice to breathe with the roos, rejoice with the cockatoos and show off with the grevilleas. Julie xx

    Liked by 1 person

  3. I love how open you are, Barb. It is a gift of rare beauty to share your innermost thoughts and yet it is a subject of great curiousity for most of us. Thankyou for sharing. My love and prayers are with you. xxx

    Liked by 1 person

    • Diana, how special to see your name here and read your kind and honest comments. Love and prayers are always welcome in my life, as are you.
      It’s been extra special for me to have a few of the family look in here 🙂 love barb

      Liked by 1 person

  4. This was beautifully written Barb! I have not progressed enough into the medical miasma of COPD to even know if I would qualify for transplant, but my guess would be no because of other health concerns. I value your insight into how your made your decision. I too would prefer to live my life on my terms rather than on the terms of some other person’s timetable.

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  5. The transplant decision is always with the patient and support person. Medical staff are to give an unbiased analysis of the pros and cons of each option. If your GP and then your physician believe your name should be put forward for consideration it will go to the lung transplant unit and you will be interviewed and it will be decided if you should have a week of pre-assessment testing. At the end of the comprehensive testing you will be then given a prognosis.

    We went through testing at the end of 2012 and we’re advised that in my case they estimated a life span of 4 years post transplant with a wait time around 14 months for the transplant. This upset us.

    We were advised to think about it, talk to our medical team and family and go back in two months and advise the lung transplant unit of our decision.

    Between the end of November and end of January 2013 my condition deteriorated and spent 15 days in hospital with respiratory failure.

    At the end of January 13 we accepted the offer to go on the wait list, end of February 13 we met the Head Surgeon and he accepted the task of operating, end of March 13 we were listed. Eight days later we had the first call in but the lungs were not good enough. 3 weeks later we had the second call and again the lungs were not good enough ( made it right to the theatre). A week later we received a magnificent gift of a second life and I say ‘we’ as it has given my partner and our two adopted girls a second chance at life as well.

    Post transplant recovery is up to the recipient. My meds are less than pre transplant. I was discharged from hospital 12 days post transplant and 4 months later I participated in the Bridge to Brisbane. I believe I am achieving the goals and aspirations of my donor. At six months post transplant I was walk/jog 10k, bike 15k, swim 400m as a minimum every second day. I am 64 and one of the eldest double lung transplants in Queensland. At 12 months post transplant (beginning of May) I had clearance to fly and we travelled to Philippines to see our girls (12 and 10).

    I became ill in 2010 with COPD and midway between 2010 Pulmonary Fibrosis was discovered and within a month it became extensive. By early 2021 I was on oxygen 24/7, and required a scooter to get around. Our minds play games with us as when I saw our girls at the airport I could not believe that they were our little girls as I could only remember them from 2010 even though I had been shown photos of them. We ran, we played, we swam, we were a family again.

    We returned to Australia 2 weeks ago and I was asked to present at DonateLife’s Remembrance Service on the Gold Coast on 14th June. This was the most emotional moment of our lives. I carry my donor’s DNA and we are so proud and honored to be given a second chance at life. The medical team now estimate my life span to be 10 years.

    In Australia there are more than 5,000 COPD sufferers that die each year (directly related). There are only around 50 COPD sufferers in Australia that receive a life saving double lung transplants a year – 1% chance.

    The final choice of a transplant is with the patient. Having ‘been there, done that’ the effort to get back quality of life is worth the world.

    Liked by 1 person

    • Thank you Ross for looking in and sharing your story of a second chance.

      Well you lucky man! You certainly won the transplant lottery. Being offered lungs in eight days might be a record. (I note you waited just four weeks for a match). Your recovery has been textbook also, seemingly without a glitch.

      You also had the support, both emotionally and financially, to undertake the surgery and recovery, another bonus.

      When I first saw the transplant team at St Vincents Hospital in Sydney they were cautious about my chances. Single lung transplants, which I was being offered, have, statistically, less favourable outcomes than the double transplant you received. There is a scarcity of organs so people manage fine on one lung, but that does leave the native lung in place, a concern for me.

      You became ill in 2010 and received a transplant early in 2013 at the age of 64, the upper age limit I would think. Many people are diagnosed when they are too old for this surgery. Copd is time sensitive and doctors need to identify us sooner, I’m sure you’d agree.

      I became seriously ill aged 41, 17 years ago. The disease has left me weakened and wasted.

      As a former marathon runner and tennis player, I miss terribly the sheer joy of being free to move around, but the life of the mind has its compensations.

      Googling you, I see you are the Chairman of the Lung Foundation of Australia’s Patient Advocacy Group. You will no doubt meet other people who have also had successful transplant surgery. You will not meet those who don’t.

      My voice is more rare: I am one of those who declined surgery for a complicated set of reasons, as I shared, and part of that for me has meant accepting that death is on the way, just as it is for all of us.

      While I was having the many tests needed for transplant, my dear friend J, whom I had met in pulmonary rehab, a nurse herself, aged 60, had a transplant. Her recovery, in stark contrast to yours, has been a horror show and she was wheelchair-bound and on oxygen 24/7 one year post transplant.

      As I said in my post ‘Transplant Blues’ , ‘you gotta know when to hold ‘em, know when to fold ‘em’.

      PS Ross, I apologize for the delay in posting your response. My computer has needed a transplant, a whole new mainboard on a Macbook Pro just out of warranty! Apple was kind enough to agree to the repair and we’re both back up and running.

      All the best.

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      • February 18, 2016
        Farewell to Lung Foundation friends

        Ross William Lloyd

        Lung Foundation Australia is deeply saddened by the sudden passing of Ross Lloyd on 26 December 2015, aged 66. Ross was diagnosed with COPD in March 2010 which was followed by a subsequent diagnosis of pulmonary fibrosis. His health quickly deteriorated but, in May 2013, he received the gift of life – a double lung transplant at The Prince Charles Hospital in Brisbane. Following his transplant, Ross became a passionate advocate for the work of Lung Foundation Australia and was Chair of CPAG, the COPD Patient Advocacy Group. He was especially passionate about the benefits of pulmonary rehabilitation, in which he had participated to ensure he was fit and well enough to be put on the waiting list for a lung transplant. In September 2014, he completed his first “Bridge to Brisbane” 10km run and repeated this feat in August 2015 when he was fortunate to have the opportunity to run with the family of his lung donor. Ross will be sadly missed by all who knew him, but particularly by his partner Mhar and his children Jeremy, Belinda, Marejoice and Jopai.

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  6. Sheri, life has tossed a few curved balls my way. I have missed talking with you! My beautiful 18 year-old cat Tigs died over the weekend. I needn’t say more to you, an animal lover I’m sure.

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  7. HI Barb; Tim gave me the link to your blog – beautiful writing and very generous of you to share so much. So sorry about your Tigs as well. Glad you are living in such a beautiful place and maybe we will get to watch another All Black win at the Bowlo one day.

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    • Hi Nicki, thank you so much for your kind comments. This blog is a mysterious creature.
      You’re on for the Bowlo but I have to say, I barrack for the Wallabies (and it’s not easy, dear). Family in NZ are only just mentioning my name again . . .
      The place next door’s been done up nicely since those football hooligans sold up and went back to where they came from.

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  8. Barb, I loved how you told your story with such insight and raw truths, what a gift you have to express yourself with words. Thank you for sending me your link as I am asking the questions about a transplant or not for myself. I valued what everyone had to say as I am seeking insight. I remember years ago how smokers bonded and now even if some not caused by smoking, we all still have a common denominator an automatic bond, the battle to breathe. I have appreciated connecting to others with like struggles and the beauty that comes with encouraging each other by sharing. Prayers, Jan B = ready or not.

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    • Yes, we are indeed fellow travellers Jan. My life has more meaning when I feel what I have experienced might help others – either to inspire or to warn! So thank you for your feedback.

      I subscribe to a podcast by Chest magazine and listened to a recent one where transplant experts discussed future breakthroughs. The doctor said the biggest news was that there were options other than transplant on the horizon. He also said widening the donor pool to take less suitable lungs and increasing the age of eligibility to 75 were on the cards. I hope we can stay in touch.

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  9. My doctor also told me my only cure would be a lung transplant, but we didn’t get into any deep discussion of what that would entail. Reading all you wrote gave me a much clearer picture, and convinced me that I wouldn’t want to do it. First, I don’t have a caretaker. It’s tough enough just getting a ride to a doctor visit, so I can’t even imagine needing someone 24/7 to help me. Secondly, I’m not crazy about taking medications and I know the anti-rejection drugs are mandatory. After reading what you and others have written about the success rate and the possible years added to life being so few, it just doesn’t seem worth it. What’s difficult is actually wrapping my mind around not being here any longer. I know it’s inevitable and I should start divesting myself of belongings, so as to ease the burden on my son, and yet I don’t do it. I feel so bad that I’m leaving him with so much to handle; clean out all my belongings and sell the house. He can do it, and there won’t be a big rush, but it’s still a burden. Anyway, I wanted to thank you for your story because it definitely was enlightening and helpful to me. Best wishes. Carol

    Liked by 1 person

    • Carol, hello! Thank you for a lovely reply. I am just coming out of one of the worst exacerbations in years after catching a cold, so this will be briefer than I would like.

      The New York Times published an in depth special on COPD in which it was stated the best candidates are under 65 and have severe heart and lung disease, with a life expectancy of less than 18 months. However, it stated “lung transplantation is becoming more out of favor for patients with end-stage COPD because it is unclear whether transplantation provides a “useful” quality of life.”

      http://www.nytimes.com/health/guides/disease/chronic-obstructive-pulmonary-disease/print.html

      I’m relieved to have moved on from that decision.

      Now Carol, perhaps it will be healing for your son to go through your things when you are gone; to remember. To set aside mementos. He will want to do this.

      I haven’t tidied up too much and Frances says she doesn’t mind finishing the job.

      I remember opening Mum’s wardrobe and seeing just a stark few items of clothing left as she prepared to go. It was so sad.

      My sisters and I went through her personal things and cried and read letters. We laughed and divided up her favourite scarfs. We buried her underwear and noted how white and beautitul it was.

      Carol, no one lives forever. We might be going on ahead, but they will all come to.

      Most of our ancestors will have lived shorter lives than us.

      This isn’t what I’d choose but I can be grateful for having time to prepare for dying.

      I’m very frightened by my latest flare up, the low oxygen is playing havoc with my nerves and my imagination runs riot, but the worst thing is the wild heart rate and high carbon dioxide that puts a chip of ice in me that nothing can warm.

      Please drop by again. We certainly have walked in a mile in each other’s shoes.

      I wish I could give you a big hug. We already have one life, let’s make the most of it, eh.

      Barbara

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      • Barbara, so sorry to hear about your latest exacerbation. I also just had a brief hospital stay, after putting it off for a few weeks, I thought I really need to go. They put me on breathing treatments and some super duper diuretics (they did a good job), but after getting home again, my legs swelled again. They monitored my heart and while I don’t think it’s perfect, they obviously didn’t think it was a big problem. These days, the doctors down here in South Florida very rarely even bother to explain things to the patients, at least that’s how it’s been with me, so I have to look up everything in the medical reports, to figure out what they found. I actually asked the pulmonologist if I am in stage 4 and he nodded. Never having discussed any stages with me in the past. So, now, I’m back to feeling exactly how I felt before I went into the hospital, barely making it across the room without running out of breath, and that is wearing oxygen. I wish we really had a date or a close number of weeks or months, so we really could plan. I can’t seem to bring myself to plan anything and each day I hope the next day will be better, but it never is. I’m going to have to read that article you mentioned, but obviously, they don’t think a lung transplant is a worthwhile thing. I wouldn’t want to go through all that for a promise of 18 months or even five years.

        Anyway, I hope you begin to feel better soon, at least better than you have been with the exacerbation.

        Carol

        Liked by 1 person

  10. Barbara, my dear, I am so sorry to hear you have been unwell – and hello Carol.

    Which wise sadhu was reputed to have said that life was nothing more than a preparation for death … whoever it was, a pox on his house and all who live within. I cannot imagine a journey more bereft of purpose than seeking wisdom and enlightenment with every step, only to kark it at the end, just like everyone else.

    What sort of enlightenment is that? Live joyfully, with generosity and humour. Fight the dying of the light with every strategy you have in your arsenal, and that arsenal includes all sorts of small and precious things as well as the big stuff – like sizing up the quality -v- quantity argument and making the right choice for you, or making something joyful and profound of sifting through your own, or another’s, detritus of a life well lived.

    Not to mention making plans: my kitchen cupboards need clearing out, and I froze some chook carcasses today to make broth … oh, maybe next week some time.

    W. C. Fields’ epitaph is one that strikes the keenest balance for me: ‘All things considered, I’d rather be in Philadelphia’.

    I was saddened to read today of the death of Norma Moriceau – one of those people who are both terrifying and magnetic in equal measure. I met her briefly at a post-Opera party many years ago. And I remember feeling wistful, wishing that I had been more like her, with her courage and vivacity. A true original.

    I have made plans in Melbourne for not just spending time with my past love (but not love past), but having lunch with another friend with whom I have exchanged too many Christmas greetings that end with … ‘we really must catch up some time’ … and now is the time.

    With great affection, as always … Glow

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  11. Barb and Glow, my thoughts are with you my new friends. Funny how these similar ailments can bring people together, even if they are on different continents. What an amazing time it is to be alive, and what a shame that most of us won’t see what the newer technology will bring. I found it interesting the way it was described about going through a mother’s possessions and sharing them. When my mother died, most things just stayed with my father, but she gave away pieces of jewelry to me and my brothers’ wives. My father would leave his to my brothers many years later. The jewelry really didn’t mean much to me, but I saved from her a nightgown, a housecoat, and a pair of socks and sneakers, as well as a dress she wore to one of my brother’s wedding. She died in 1993, and I still have all those things. Once in awhile, I’ll look at them or hold them. I’m grateful to have some video to watch where she is happy and healthy, and the same goes for my husband who died in 1997, at the age of 48. We never know how long we will have. When I first became ill 20 years ago, I had a perforated cecum. I lived with pain until I couldn’t take it any longer and the last thing I remembered was calling an ambulance at 3AM. My husband had died and I was wallowing in self-pity for months, living on coffee and cigarettes. I don’t know what caused the perforation, but I was asleep for 2 1/2 months, and when I woke up, I had an illeostomy bag and a tracheostomy. They removed the trach and I was able to breathe, so they didn’t have to warehouse me, but it took many months for me to be able to walk again and after about a year, I had the illeostomy reversed. That bag was horrendous. So, years went by and I did end up being able to have a decent life for several years, but then the scar tissue from the tracheostomy is what has caused my COPD. Scar tissue is taking over my lungs. Anyway, I got 20 more years. I saw my son marry and I have an 11 year old granddaughter that has brought me lots of joy, so I can’t complain. I’m 70. I know 80 might be better, or 85 even, if I was healthy, but I’m not healthy and it probably is a good thing to go before I’m even more of a burden to my son. As it is, he has to shop for me and take me to the doctor. He has a family and a job and it’s very inconvenient for him. I wish I could just watch their lives like they were on TV. I don’t need to be here and live life, I just want to seet them. Weird, I know. Anyway, I know I’m rambling and you both have your own issues to deal with. I hope you both have loving friends and family around, because it really would make things a lot easier if I had that. My contacts are mostly online, except for when my son brings the groceries weekly and my granddaughter comes sometimes. Now, grandma isn’t as much fun as her friends or other activities. I don’t have the strength to be much fun either. Anyway, I don’t even know where I was going with all this ranting, but thanks for paying attention. I wish you both as much wellness as you can get. 🙂

    Carol

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