Chapter 6: Transplantation (abridged)

Chapter 6

Transplantation (abridged)

As I was being wheeled to theatre I was surprised how calm I was. I knew there was a chance I would not wake up from this most dangerous and complicated of operations. As we got closer my nurse Winnie was quiet as was the wardie wheeling my chair. When we reached the door Winnie looked at me and we both knew there really wasn’t anything to say so she bent down and kissed me on the cheek and the wardie wheeled me over next to the table. Once I got up on the table some final paperwork was done and I was asked if I understood everything that was about to happen. I replied “its a bit late to ask me that now!”.

I lay down on the table so more lines could be put in me and the anesthetist could prepare to do his job. I was asked if I wanted to say anything before I was put under. It felt a bit like any last words before execution. I told them “no matter what happens do not give up because I won’t”. Turns out these were prophetic words.

The operation was long as one would expect with replacing the most important organ in the body. The new heart took considerable time to start up and was an obvious problem from a hypoxic brain injury point of view. As my body was taken off the Heart Lung Bypass machine (a machine that keeps oxygenated blood flowing while the heart is disconnected from the body) a drug called Protamine was administered to reverse the effects of the heparin (blood thinner) that was in my system.

I had a 1 in 1000 (Dr’s words) reaction to the protamine and my pulmonary pressures went through the roof with my lungs blowing up like balloons!

The surgeons could not close me up.

For the next couple of days I lay heavily sedated with my chest open with only a surgical gauze cover of some sort while we waited for my lung pressures to come down. My friend Stewart reckons it was the creepiest thing he had seen as he looked down upon me and could see the dressing impeded image of my heart beating underneath. After my lung pressures had come down I was wheeled back into theatre and my chest was finally closed with titanium wire in my sternum and the glue and internal stitches that were used in those days.

While I was out of it waiting for my lung pressures to reduce, my mum had flown down after my high school sweetheart Dianne had stayed with her and family friends Brian and June organised to get her down to Brisbane from Townsville. Bear in mind we had been in hospital together in Townsville at the same time nearly a year earlier. Dr Andrew Galbraith an amazing doctor and an amazing human being was talking to my mum and was doing the whole good news bad news routine.

As soon as Andrew started to explain that I had had a reaction to the Protamine and that it took a really long time to get the new heart started and finally that they were having problems with one side of my heart it was all too much and mum had a heart attack in Andrew’s arms. So yes my mother had a heart attack in the arms of one of the finest heart transplant and heart failure doctors in the entire world. If you are going to have a heart attack that’s the place to have it.

I already had hypoxic brain injury from the first heart attack a year earlier and now here we were with the possibility with deeper injury to my brain on top of the heart and lung issues. As is always the case with these things we wouldn’t know until I regained consciousness.

I finally woke up and by this stage it was roughly three days after the operation. I was disorientated but was picking up on things quickly. I remember thinking I had to fight harder and was saying that to myself over and over until I said it out aloud and my Intensive Care Nurse who was sitting at the end of my bed heard and told me to cut myself some slack. I guess she thought I was metaphorically beating myself up for not being strong enough and looking back I guess I was.

It’s funny the things you think to yourself about how you want your legacy to be. At the time I knew I was nowhere near out of the woods as the saying goes. I just wanted to be remembered for being a fighter. Also as a life long atheist I was not going to be a death bed conversion. I detest weakness and to me that is the height of weakness. After a couple of more days in Intensive care with a few little hiccups along the way. The central lines for pain relief and also the food tube were removed and we were preparing to go down to the transplant ward for recovery. Then it happened.

I was being wheeled to the shower for the first time after the operation, we got in there and as the nurse proceeded to wash my chest she started to pull down the dressing on my chest wound and then we both stopped. My first thought was don’t freak out! Her first words were that we had better get a doctor to look at that. You see if I have learned anything about different sections of this hospital it’s the way different nurses handle difficult situations. Unlike other areas of the hospital intensive care nurses tend to be far more decisive with their answers than the others but this lady’s answer to my question of “that’s not supposed to look like that is it” was not as decisive as I expected.

You see when the dressing was pulled down it turned out my internal stitches had come undone and I had opened up. It was about the creepiest thing I had ever seen and it was happening to my body! There it was all open bright red and fleshy like nicely marbled steak. Seen worse in horror movies but when it’s your body it takes on a different look.

I was wheeled back to the bed and we waited for the doctor. He arrived and all he could say initially was “mmmmm that’s interesting isn’t it”. I wanted to start laughing but I had this crazy thought that something might move inside me where it’s not supposed to move.

It was decided I would be closed up on the bed under local anaesthetic. All of a sudden out of nowhere nurses started appearing and the couple of visitors that were there were allowed to stay. They prepared my chest and the surgeon did his thing closing me up. All the while this was happening the prettiest nurse in the entire hospital was holding my hand telling me how brave I was. I have to admit that my first instinct was to say stop it and that I am not a child but there was no way known I was going to do that. She absolutely took my breath away. Short blonde hair and a fabulous body, I was going to milk this moment as long as I could. I wasn’t till I looked into a mirror later that day that I realised just how dishevelled I really looked. The dreams of the ill and infirmed.

Later that day I was transferred to ward 1A/B so that I could transition to my eventual release home which would take another couple of weeks as I started to have problems.

My chest wound was refusing to start healing and the risk of infection was starting to rise. The infection team started to see me and began to prepare me for the possibility that their maybe multiple operations to follow as they may need to open me up again and clean me up inside. If there was infection this may need to be done on multiple occasions. Needless to say the risks were huge given what my body had already been through. It was also one of the rare times I genuinely felt fear.

Its hard to explain just how vulnerable one can feel at a time like that but I’ll give it a go. Imagine laying on a bed after one of the most dangerous and impactful operations the human body can undergo. Your skin and flesh has been cut from the top of your sternum (bottom of your throat) down to the middle of your stomach. Three holes are made above your belly button so three drainage tubes can be installed. Then a large cut is made in your right groin for the Aortic Balloon Pump. The groin wound would take three months to heal and required me to wear a bag on it so the large amounts of fluid could be expelled.

After the chest is exposed a medical version of a jigsaw is run up the sternum and the chest cavity is opened and the operation takes place. So you have the most important organ in your body replaced and you cannot have your chest closed afterwards as you have what is described as a one in a thousand allergic reaction to a drug called protamine which is used to reverse the effects of the blood thinners during the bypass phase of the operation.

After all of the things that have been described above it is really very difficult to feel anything but completely physically vulnerable when you are laying in bed and while you are still technically open with the chest wound refusing to heal a doctor tells you we are probably going to have to go in again and clean your insides of infection.

It is at this point that you genuinely start to think that it wouldn't be too bad to die as long as it happens while I am asleep and don’t know anything about it and I don’t wake. Let’s face it, up to that point I have more than paid my dues for ten lifetimes I owe nobody anything except my mum and my donor and surgeon. In the end I pulled myself together as the one thing I never want to be known as is a quitter.

One morning during rounds the doctors came to see me as usual. Dr Keith McNeil who headed up the Lung Unit at the time was doing a shift on the Saturday morning, I hadn't seen him since he asked me if i had any questions as i sat on the table in theatre just before they were to knock me out for the transplant. I wanted to thank him for his part in saving my life. He responded by saying "don't thank me you are the one that told us that no matter what happens don't give up". I couldn't believe that he remembered. That is the sort of thing that sorts out the good doctors from the great doctors.  

Thankfully after a number of tests were done over the next day or two I was decided not to be so keen to open me up again and I was more than happy to concur. There was however still the problem of wounds not healing and this was getting me down. It was rather creepy going into the shower and seeing the two edges of this huge chest wound not “knitting” together and I was wondering what was going to happen. After a few more days and no progress I spoke to one of my nurses at the time after yet another visit from the wound management team. Bridget was and still is a great nurse and unlike so many actually listens to the patient. I confided in her that I really didn’t care what the scar ended up looking like I just wanted it to start healing. You see at the time the thinking was the best wound management was to keep a moist covered sterile environment. Unfortunately it was obvious this was not working and the longer it remained this way the greater chance for infection. I suggested to Bridget that when I was growing up the usual course of action was to keep a wound clean and dry and open to the air if practical. We decided to do exactly that and lo and behold the next morning it was like a miracle.

I woke up and the wound had dried out and most importantly tissue had started to grow down the gap that had formed after the outer stitches had started to loosen with the constant movement of the previous week or two. All in just a bit over 12 hours!

Yep sometimes, only sometimes I must stress old school works.

So over the next few weeks the wound healed but there was still the matter of the groin wound and its leaking of fluid. This would end up taking about three months to heal and was watched over by the hospital’s plastic surgeon. Yes there are real legitimate surgeons called plastic surgeons whose job it is to oversee the healing of these sorts of wounds not just give teenage girls a new rack.

Around this time I was learning about my drugs that I would be taking twice a day for the rest of my life plus a plethora of other medications that I would eventually be weaned off. There were some drugs that had the most awful side effects but I coped with it well given I was by myself with no one to help. My mum was recovering in Royal Brisbane Hospital from the heart attack she had beside my bed so mum wasn’t an option at the time. I found my self shaking terribly from one of the immunosuppressants called Cyclosporine. Unfortunately with my hands shaking uncontrollably I was genuinely worried I would not be able to look after my wounds and most importantly the PICC line that was being used to deliver drugs intravenously. I stayed in a few more days while my body settled down and was then able to go home.

When you are in a life and death scenario for a long period of time where things such as infection or the heart simply not working anymore come into play your mind starts to deal with things in an unusual manner. The thoughts you have range from what you are going to do when you win lotto this week to would it be so bad to die again. After all when you have been through it all previously it can work two ways. On one hand you can say to yourself I have been through it all before, died and was revived after a crazy length of time or you can feel the worst fear imaginable as you have been through it all before and you know exactly what to expect. I experienced both.

It also doesn’t help when you are dealing with a really great hospital that sits in the middle of an overarching incompetent statewide organisation called Queensland Health. Thank goodness when I went through this initial phase the people at Prince Charles Hospital in Brisbane, Australia were an oasis in the middle of a statewide public health mess. The health minister at the time was pretty much hated by staff due to constantly fighting with them about pay and safety issues and when you hear stories about the ward not being able to get in-ear thermometers at thirty dollars wholesale but the government being prepared to give money for a pedestrian bridge across the Brisbane river and money for the arts while health misses out, no wonder people had lost faith in the government at the time. The State of Queensland however continued to vote for them for many years as the opposition were a complete rabble.

For the next three months I practically lived at the hospital having biopsies, clinics and anything else we could do there. Biopsies are always fun. You lay on the table on your back and turn your head to the left so there is access to a neck vein (usually Jugular). Local anaesthetic is placed around the entry point of the vein, once it starts to take effect the cardiac catheter is pushed into the vein. The wire with the tiny forceps are pushed down to the heart where a tiny little piece is cut off. When I had my first biopsy after the transplant I overheard the doctors remarking how much easier it is to get a heart sample when its freshly transplanted. “Fresh meat” one of them remarked and started laughing so I started laughing with them. After they have  done what they need to do they sit you up on the table and pull the catheter sheath out of your neck and get you to hold your neck for about half an hour and you are finished. You have a drink and a biscuit while you are waiting and go home afterwards.

Whilst it is an invasive procedure it is also the easiest of those procedures.

Thankfully I didn’t have any major rejection episodes in those early months but it certainly wasn’t a smooth ride. Unfortunately side effects from the drugs were common plus there was the small matter of me not having Cytomegalovirus (CMV) in my system and my heart being CMV positive.

CMV is a common virus that most of the population carry in their system and unless you are immunosuppressed  you will more than likely never show any symptoms of illness as it is simply one of those bugs we carry as humans that rarely effect us. If you are immunosuppressed however it can be quite deadly. Transplant recipients, and HIV/AIDS patients are particularly at risk. I was at risk so I was taking an antiviral drug called Valganciclovir. As soon as I was taken off the drug at the six month mark post transplant I went CMV positive and ended up in agony with nerve damage throughout my upper body. The Heart Transplant unit had never seen someone present with these symptoms. It was the start of another nightmare. More on that later.

Once my wounds had healed at around the three month mark the leaking wound in my groin finally stopped. There was a definite moment where I realised that I was not going to need to wear a bag and change dressings all the time. It coincided with a particularly beautiful cloudless sky, the likes of which I hadn’t seen since living in Townsville, my home town.

Something happened to me that morning as I sat in my car. I think it all finally hit me. I had come to the realisation that I really did have a chance of survival. I was alone in the car and that was what I needed at the time. I completely broke down into tears, but they were tears of joy and hope. For the first time I believed I was going to live. I had endured a living and sometimes not a living hell for some time. I had been poked, penetrated, sliced, sawn, sewed, zapped and burned. The only section of the hospital I hadn’t used was the gynaecology unit and I’m sure if they could have found a way they if they could have. I was so emotional I needed to celebrate.

That Saturday I found out where my old cricket team was playing and decided to go down and let the guys know I was alive and was keen to make a comeback if they would have me. Not only were they happy to see me but they were also very protective of me. The following week I would rejoin the team and play at Victoria Point in Brisbane which was also the site of my last match 18 months earlier where I had taken four quick wickets and saved our rear ends as we were in trouble in that match. I was coming full circle.  

I was really in no condition to play yet as I could not run plus I did not yet have full confidence in the structural strength of my sternum after the operation. Still I was never very good as keeping my distance and watching so I jumped in the deep end so to speak and agreed to open the batting as I had done all my life. After an hour or so I was being sledged as usual with the fat jokes flying as they always did. It was the best thing the opposition could do as it always helped me when people made fun of me and insulted me on the sporting field as it help me concentrate and made me more determined. I was unable to run. I reached my fifty just before lunch and when we took the break for lunch I went over to my car and got some dry inner gloves and dried out the ones I had been wearing. I also wanted some time alone to relax and think about what I was doing. Little did I know something very special was soon to happen.

 I resumed batting after lunch and played the anchor role as a couple of the young fellas came out and did their best David Warner (famous Australian cricketer) impressions. Unfortunately I couldn’t run and all of the times I could have run for three runs I had to walk for a single. I also noticed that all of the sledging and insults had stopped. I eventually played a stupid shot and got myself caught out for sixty-six runs, a score that easily would have been a hundred if I could run.

Then it happened. Every single player on the field ran over to me and shook my hand and started paying me the most amazing compliments. My own team and everyone who was at the ground gave me a standing ovation as I left the field. I was really embarrassed as I was being feted as if I had scored three hundred runs. It turns out that at lunch one of my team had walked over to the other team and told them this was my first innings back after having the heart transplant and kept it quiet from me.

I have been lucky enough to play sport at a reasonably high level in my life without playing at the top level and have experienced some wonderful moments on and off the field but this was incredibly meaningful and truly emotional. It also showed me that people were capable of putting aside cynicism and recognising something very special when it occurs at any level of sport.

I have been asked down through the years why I haven’t got involved with the Australian Transplant Cricket Club and my reason is simple. For me it is a far greater achievement especially at the age I was playing before I had to retire to play alongside and against players that were young, fit and had no disability issues even though I have. If I can score runs against those youngsters then the achievement is far greater than going out and playing with and against people who have similar medical issues to me. Besides I don’t believe the awareness they claim to have raised is true in any way. Unfortunately most serious causes have become industrialised these days and people have forged careers in these fields and I find that quite unseemly at the very least.

More medical roller coaster riding was to come over the next few years.

Blog update 9 June 2016

Not my normal blog entry but its my life warts and all :)

Four years ago I wrote this on the one year anniversary of mum’s passing. It was on this day five years ago Friday June 10 2011 that we laid mum to rest. The week had been awful. The Sunday night I had been down at the nursing facility to try to calm mum down as she had been upset that night with everything. I sat with her for ages just stroking her hair and that seemed to calm her down. Eventually I went home and got some sleep as it had been a big weekend with covering netty amongst other things.

I got a call after missing a few on the Monday morning due to being exhausted. The manager of the facility spent 10 minutes giving the third degree as to why I hadn’t answered the phone when he called the first time. After he made himself feel better and powerful he finally told me mum had died. The low life piece of shit should have had a broken jaw after I got there but I had more important things to worry about. I have never forgiven him.

Going in to mums room and holding her after she had died was difficult but I had to cuddle her one last time. I had no more chance to grieve after that as I was too busy organising for her get up to Townsville from the Gold Coast and driving up there myself and tying up loose ends on the Coast.

On the five year anniversary nothing has changed. The pain and the loneliness are still as strong as ever. Her picture next to the TV still breaks my heart and moving it wouldn’t change a thing. I guess that happens when you have no-one here.  I try to write from the heart and in a conversational way people can relate to so I hope that is why my blog is reaching people around the world at present.

I always try to get better at whatever I do but the fact is I can’t add anything to what I originally wrote just before I moved home to North Queensland, so here it is.

Love xoxoxo

D

“Dear Mum,
It was a year ago today you left me. You left me but I understand. You had been in pain for so long and you were so scared. In that final weekend I wish I could have made the fear go away but for the first time a cuddle and holding your hand and stroking your hair was not making it go away.

Mum you were brave when you needed to be and you saved your children’s lives. You moved us to Townsville and not only gave us a life but you gave us a future. 

If I was a person of faith I would tell you “I’ll see you on the other side”. I don’t believe in such things, pity it would probably make it a little easier. Instead I’ll do my best with whatever time I have left to make you proud of me. 


Mum I wish every son could have the relationship with their mother that I had with you. Yes I was devoted but that’s the way it should be. It was wonderful to have you down here on the Gold Coast in your final months so I could see you every day if I was able. 

I just wish you were still here. 

Right now I have never felt so alone and I miss you so much but I also know that is selfish as you are no longer in pain and you are no longer scared. 

Goodbye Mum, I love you XXX and I will think of you constantly till my final breath.”

Blog update 7 June 2016

Blog update 7 June 2016

Wow what a month we have had in sport. The most impactful times are when life mixes with sport to create emotion. On the weekend we had the passing of Muhammad Ali and with it possibly the most influential sportsperson of the 20^th century. My family’s connection with Ali is strong as my cousin Tony fought him on a number of occasions including a win on one of those occasions. The 2 most famous fights were in the final of the national Golden Gloves tournament in 1959 for the light heavyweight title and the semi finals of the 1960 Rome Olympics for the same weight division.

We saw Alexander Rossi win the 100^th running of the Indianapolis 500, Daniel Ricciardo robbed of victory through his own team’s incompetence in the world’s most prestigious motor race, the Monaco Grand Prix, WTCC at the worlds greatest racetrack the Nordschleife at the Nurburgring and Leicester City win the English Premier League in the most unlikely major sporting title win in a century. There were so many other moments it just never seemed to stop.

Monday June 6 was the 5^th anniversary of my mums passing and the pain does not seem to diminish with time. As those close to me know my relationship with my mum was incredibly close and I miss her terribly. She was an incredibly brave and caring woman who saved her children’s lives and her own by leaving my alcoholic father in my early teenage years and raised us in a safe and wonderful environment in my home city of  Townsville, Queensland, Australia.

On the medical front things continue to deteriorate unfortunately with day to day life being mostly time spent trying to sleep and figuring out how to pay the next lot of bills. Breathing is often difficult so oxygen is a 24 hour thing. Unfortunately using the oxygen concentrator means very very expensive electricity bills. I have reached the point where I find myself having to stretch out my use of some medications so I can make ends meet. Unfortunately we live in a society that has become conditioned to thinking that Cancer in its various forms is the worst thing that someone can get and we have this whole societal thing that if you fight hard enough you can beat anything. Unfortunately this is simply not true. If you have Cancer there are so many organisations that are out there to help when you lose everything because of the disease. Unfortunately this is not the case if you are in a position like mine.

The concept of beating a disease comes with the idea that the human body can somehow heal anything if the right treatment can be found and the right attitude is exhibited. Once again this could not be further from the truth. The heart and lungs simply do not have the ability to regenerate tissue and rebuild function once they are damaged. There is no such thing as having chemotherapy or some other regime of drugs that will somehow miraculously allow you to go into some form of remission or be disease free if you somehow “don’t give up”. Medical reality just doesn’t work that way. This is the reason that the treatment of last resort is solid organ transplantation. Unfortunately not everyone in that situation is a candidate for a solid organ transplant.

So often we hear stories of people who get given a short time to live with a form of cancer and then all of a sudden we find out that they have gone into remission or the chemo has worked and they are cancer free. These are great stories and always pleasing to hear. Nobody wants to hear of someones death least of all someone like me who actually knows what it is like to actually die and then be revived after 20 minutes. Death is horrible. Its messy, often very painful and unlike what palliative care people will try to tell you it is never dignified. Death is the human body’s way of saying “I’ve had enough, shutting down now”.

My point? Remember the miracle stories of being cancer free or going into remission? Well they don’t exist when you have truly terminal diseases such as end stage heart and lung failure. If you aren’t a candidate for transplantation you are going to die and it is going to be a horrible way to go.

Think about this the next time you say something stupid and uneducated like “it could be worse, you could have cancer” to someone who has end stage heart failure or their lungs are failing. The truth is it can be and is worse and it is happening to the person you are saying that to. And yes I have had to cop this from people who don’t have a clue. I even had to hear it from a former ABC Radio colleague when I was the subject of an interview.

On the medical front things continue to deteriorate but I will continue to do my best to keep writing and get the things I want to get achieved. Went to hospital today to do a pre admission check for an upcoming colonoscopy. After going through my records and what I am dealing with right now the doctor said to me “with everything you have to deal with getting bowel cancer really is a minor worry”. Given the now extremely high risk of me having anaesthetics it was decided the procedure was too high risk to go ahead with and we cancelled. Unless it is an emergency any sort of general anaesthetic has pretty much been ruled out for any procedure now including an operation I really need to have but will simply have to put up with the pain till I die. Bugger.  

As usual each day is a battle however it really is hard not to get ticked off when people do silly and selfish things like disregard disability parking spots or park across 2 car parks when one will do. Grrrrrrr lol

Till next time, keep fighting the good fight

love D

xoxoxo

Blog Update 21 May 2016

Blog Update 21 May 2016

Another heart transplant clinic done and dusted. Some are uneventful but most recently have been like a U2 tribute show. The hits just keep on coming lol.

Apparently my liver has decided to join my heart, lung and kidney party which is surprising given I never invited it, but we will keep an eye on it. I can't have general anaesthetic unless it’s an emergency due to my lungs and apnoea which is a bugger given I do need an op to fix an abdominal hernia which is a source of constant pain. The specialist reiterated that my heart and lungs are stuffed and there is nothing they can do.

On the up side she finally relented and will put me into Cairns Base Hospital cardiac unit as she can't fly me to Brisbane due to me having to cart oxygen all over the place. This as some of you will already know is an outcome I have been trying to make happen for over 2 years now. It was particularly amusing when she put it to me as a proposal that she had come up with and asked me what I think. Can you imagine the look on my face as I reminded her for the umpteenth time that I had been asking for this for over 2 years? In any case I kept the peace as this was the outcome I was looking for.

I have a number of procedures coming up that I would normally have a general anaesthetic for, so what alternatives we use and what gets cancelled should be interesting.

Will be coming out of retirement in the next few weeks and writing a story on the lack of disability parking in the right places where I live here in Far North Queensland after a young journo got it completely wrong in a local News Limited paper. Unfortunately the journo showed me nothing but contempt by going on holidays without contacting me after I offered to help him and also correct the quite awful article he had written. Those of you that know me personally know how I deal with those that treat me with contempt. This should be fun. The written word is a powerful thing.

I’ll just keep battling as I always have and keep trying to get the things done that I want to get done before the end comes. As long as I can still drive and I have a computer, recording device and a camera I shall continue.

Take care luv yas all, well some of you lol

D

From Australia's ABC:

Middle-aged men missing out on friendship can face physical and mental health risks

ABC Health & Wellbeing 

By Darragh O'Keeffe

PHOTO: Research shows social isolation and loneliness are real issues for middle-aged aged men.

RELATED STORY: Face-to-face contact 'halves depression risk'

MAP: Australia

Imagine waking up one day and realising — aside from your partner or family — you have no-one to talk to.

No close friend to call if you have lost your job, no shoulder to cry on if your parents are gone and no-one to support you if your relationship breaks down.

This is the reality many men face as they head into middle age. Not only are these men lonely, their social isolation has the potential to significantly affect their physical and mental health.

Studies have linked social isolation and loneliness to a whole host of health issues, including high blood pressure, heart disease, stroke and depression.

In fact, research has shown that people who are socially isolated have up to five times more risk of dying from almost all causes.

Men with lower levels of social support are also more vulnerable to psychological distress, according to head of research for beyondblue Dr Stephen Carbone.

People in their networks dismiss it or tell them to toughen up... that's not exactly encouraging.

Dr Elizabeth Celi, psychologist

"Social supports act as a buffer, as a protective mechanism against the development of depression," he said.

"Social connectedness is a major contributor to improved mental health wellbeing."

Dr Carbone said our social networks were vital in helping us navigate life's rough patches, and those without this support find their stress is not reduced by some of the "diffusing, de-escalating things that happen when you interact with others".

Maybe these men can get by — but they'll likely do better in the long run with some friends in their life, Dr Carbone argues.

We're crowdsourcing ideas on how to maintain social connections in middle age. So get in touch and let us know your experience of making and maintaining friendships health@your.abc.net.au

Even if you do not discuss your problems with friends, sometimes just being around other people helps.

"Interacting with others is fun; it's enjoyable, it offers you a bit of an antidote to what else might be happening," Dr Carbone said.

"It's like the old adage, 'humans are social creatures'. We do better together."

A common story

A report published by beyondblue found that 25 per cent of 30 to 65-year-old men had no-one outside their immediate family they felt they could rely on.

It also found that 37 per cent of those surveyed were not satisfied with the quality of their relationships, often feeling they were not emotionally connected or supported.

Friendship tips from the experts:

• Explore hobbies and activities you find engaging, positive and productive, as friendships can flourish through shared interests.
• Think quality not quantity. It may be catching up with just one friend, once a month.
• Online is fine too. Supplement face-to-face catch-ups with digital communication - a text or Facebook message. Small steps over time help develop friendships.
• Make friends with women too, or other couples.
• Avoid friendships that revolve around drinking, drugs or uncalculated risk taking.

"Many men want greater openness with their friends and to be able to talk about personal problems, but admit they don't always have the skills or tools to initiate these conversations, or understand how to respond when a friend opens up to them," the researchers found.

UK men's health charity Movember made similar findings, reporting that the proportion of men aged between 35 and 54 who said they had no friends with whom they could discuss a serious topic (11 per cent) was double that of those aged between 18 and 34 (5 per cent).

Asked how often they had contact with any of their friends, a higher proportion of middle aged men said it was less than monthly when compared to younger men. The odds of never making contact with friends doubled among the men aged 35 to 54, compared to the younger age groups.

Wellbeing 'dips' during middle age

Friendships can be particularly helpful when we head into middle age, when many of us have lower life satisfaction and wellbeing.

The UK's latest annual wellbeing snapshot found those aged 45 to 64 were the least satisfied with their life overall.

Similarly, last year's Australian Unity Wellbeing Index identified a "slight wellbeing dip in middle age" after which satisfaction with life increased into old age.

Men and their sheds

If you or someone you know is looking to connect and make friends with men of a similar age, a Men's Shed could be the way to go.

The Men's Sheds movement was formed and decade ago and since then has taken off across Australia, providing a powerful avenue for men to connect and socialise.

That same opportunity to make friends and share skills is now available via your preferred device atThe Shed Online, a virtual community for men.

Founded by beyondblue, The Movember Foundation and the Australian Men's Shed Association, the Shed Online is a space for men to talk and interact with other men.

It also provides men with information on health and wellbeing.

(Photo: ABC South West/Anthony Pancia)

It has been suggested the demands of managing the home, balancing work and family, as well as caring for ageing parents and children may all contribute to this sense of dissatisfaction.

Given the "buffering" aspect of friendships are so vital at this time, why is it that friendship is such a challenge for some middle-aged men?

Expectations and the narrow cultural norms associated with masculinity were identified as issues by those who contributed to the beyondblue research.

"The expectation that men are silent, resilient, unemotional and self-reliant makes it harder for them to engage with others, and especially with other men, in any but a very superficial way," the report noted.

Yet social expectations and norms do not provide the full explanation.

"There are nuances below that, such as changes in family circumstances, or financial issues, or changes in work, or people moving away from where they grew up, or middle-aged men not keeping up with sport and losing contact with that group of friends," Dr Carbone said.

Another possible factor is that it follows a period of establishing life partnerships and starting families.

"It's in that timeframe, the 30s, that we're partnering up, starting to have kids, becoming very busy with jobs, and I wonder whether it's those contextual things that contribute to that observed dip," he said.

Don't stop making an effort

Many men, for whatever reason, stop making the effort, according to Dr Carbone. But the truth is our social networks need to be nurtured and kept active.

It would be nice to have more time with friends, but everyone's busy ... I've been the instigator of catch-ups before, but it's a hassle.

Steve

Steve, a 34-year-old professional who is single and lives with his mother, admits he does not meet up with his friends as often as he would like.

Making an effort to catch up with them more frequently would be good, but after a day's work he is often tired and prefers to just go home and relax.

The beyondblue research described Steve as being closest to the average level of social connectedness for this group of men.

They have no real emotional, financial, time or health barriers, yet while they see some value in having a rich social life it's not a priority for them.

"It would be nice to have more time with friends, but everyone's busy," Steve said. "I've been the instigator of catch-ups before, but it's a hassle."

Some men lack skills to get help

Dr Elizabeth Celi, a psychologist and men's mental health specialist, said many middle-aged men "missed primary school and high school", when it came to acquiring skills in emotional openness.

Face-to-face contact is key

Catching up with a loved one in person can be more valuable for their health than a text or a call, research shows.

"You're talking about a generation of men who weren't encouraged or raised to express themselves, if anything they were overtly and covertly given the messages you don't share your emotions or open up about your personal issues," Dr Celi said.

"By the time they're in their 20s and have gone through the early developmental phase, the generations change and socially we're in a different place where it's OK for men to do this, and we want men to do this.

"But they haven't had a chance to learn it. And then we expect them to do it in a day."

Dr Celi said society needed to be more receptive to men opening up.

"I speak to a lot of men who, when they do open up, the people in their networks dismiss it or tell them to toughen up ... that's not exactly encouraging those men to build quality friendships," she said.

But she argues it is important not to compare men's friendships with women's.

"Men do quality friendships, which means it will typically be fewer friends in their network. They don't necessarily show them outwardly to the same degree that women do," she said.

24-hour telephone counselling

• Lifeline on 13 11 14
• Kids Helpline on 1800 551 800
• MensLine Australia on 1300 789 978
• Suicide Call Back Service on 1300 659 467
• Beyond Blue on 1300 22 46 36
• Headspace on 1800 650 850

For those of us who chose to grow up on, Earth Wind and Fire, The Jacksons, James Ingram, Jeffrey Osborne, The Commodores, Luther Vandross and Brothers Johnson etc…………….

Prince was our John Lennon

Well done New Yorker

Blog update 21 April 2016

Blog update 21 April 2016

Well time for another update. Unfortunately things are deteriorating. Dealing with fluid build up means breathing becomes more difficult. Blood results haven’t been good for a while and heart likes to let me know its still there in only the special way it can lol. Unfortunately the transplant unit are playing games again and refusing to reply to email questions of a medical nature. Not only is it unprofessional I have to wonder whether it’s bordering on a criminal act. We are told from day one we can rely on certain people and we certainly need to as years go by. Unfortunately they are the first to point out your responsibilities but try to absolve themselves of any responsibility through their actions. The behaviour is disgusting and unprofessional and unfortunately leaves me with no option but to look at legal and public (media) action as soon as I am able. It is so sad that it has come to this but it is what it is.

The pain throughout my body is constant now with only little relief from the opiates. I would like to be more productive with my writing and I am doing my best but it is getting harder. I am worried I will run out of time to do the things I want to do before the end. I will not allow myself to end up in any sort of palliative care as the words “Queensland Health” and “pain relief” do not go together in my vast experience with them.

Chapter 6 of my book seems to be taking forever but it is now nearly there and will be posted shortly.

Take care all

I’ll keep battling

D xo