This is written by Annie -Tim’s mum. This has been our journey as I see it and is not to be seen as a source of medical advice. My understanding of the medical side of things may have easily been misunderstood due to the high emotional turmoil that accompanies this disease. Some periods during this time are just a blur in my memory, probably a safety valve to keep me sane. Sorry this is so long – I have tried to compact 7 years into a couple of pages!
1979 - Timothy was born. I saw him take his first breath, I held him tight. I remember a nurse trying to prise him out of my arms to weigh him. Twenty-seven months later his brother Philip was born. This day was just as amazing -experiencing a new life. Philip too had to be prised from my arms. The next 18 yrs were full of the usual ups and downs, what I would call normal childhood illnesses. When things were hard going I would be one to say “ well at least the kids are healthy.”
1998 – Tim was starting out in life, excited by his University plans and with a whole life ahead of him. He had never had any medical problems except the usual childhood drama’s. He left home and shifted into a flat, going to Uni and delivering pizza to pay for himself. I guess one of the only “wotifs” I have is that I did not put up a bigger fight to keep him home longer.
1999 – The origin of the blood clot is not a certainty but after many tests and theories a clotting disorder has been ruled out many times by many doctors. We see this as a one off; an accident. Tim went out to a band as most 19yr old Uni students do. I am not sure what or how much he had to drink but he was in “party” mode. When he went home that night he slept with his arm raised up over his head and can remember waking up with his right arm completely numb and cool. After some tests in recent years we have found his top ribs are high (this is not uncommon) but this did contribute to the blood supply being cut off to his arm. During this night a clot formed in his arm. We were not aware of his arm being a problem for probably over a week when he mentioned it to us as it was swelling up when he used it. We did mention that he needed to see a doctor but he had planned a trip away for the weekend and during this time did some bushwalking. At some point, some of this clot broke up into tiny pieces and showered through his lungs. He did go into hospital a few weeks later when he phoned one night to say his arm was huge after cleaning his fridge. We believe that at this time it was most likely too late and the damage had been done. The only regret we have about this hospital visit is that some base line tests were not done such as aVQ scan and this has made it harder to prove he has not had further clotting events – this is a major issue for transplant. If they had been done we would have absolute proof that it was only a one off event. It was difficult to monitor what was going on as he was not living at home. He was started on warfarin at this time as a precaution.
2001 – 2002 – Tim continued working and studying and often complained that his arm would swell up with use and this was to be expected considering the size of the clot. I believed that he would grow extra veins around the clot to compensate for the blockage. During this time he was also feeling like he was a bit out of breath and put it down to being a bit unfit - he was not a sporty kid. He also shifted interstate and found a new doctor who was not happy with how Tim was feeling and investigated further. This investigation showed that Tim had pulmonary hypertension. He deteriorated quite fast during 2002 and we were told that he probably did not have long to live. I still cannot process that information without feeling sick and desperate – it is one of those blurred memories. The drug regime started and we did not have the drugs that are available now. He went on a sildanafil trial and they also wanted to trial him on Bosentan. The hitch with the trial was he had to go off the sildanafil. It was during this time that he took a slide down to the point he was not able to walk without stopping every few paces. The Bosentan (Tracleer) was not for Tim. His doctor in St Vincent’s referred him to a surgeon who saved his life – I am not sure if we are able to name doctors on this site but this surgeon and this doctor have given us time, and time = hope, hope=chances.Tim had a procedure called a Pulmonary Thromboendarterectomy. (PTE) This was a huge risk; he was the 7th in Australia. The operation was to remove the clot residue from his lungs to open the blood vessels up. The process of the PTE is a story in itself so I won’t go into much detail here but the crux of it was that it could hasten his death by several months, it could cure him or it could buy us time – That is a day that is in every cell in my body. I kissed him on the forehead and said we would be waiting for him when he came out and all would be well – not knowing if I would ever talk to him or see him alive again. This did not cure him, but did give us time – his surgeon was pleased that he made it through, it was touch and go a few times – he said “ we will see you when you need a transplant”.
2002 – 2005 - Life went on with a portfolio of medications that would impress the best – at the end of this story I will list his meds. It was a cocktail that has to be mixed and changed and we experimented. We had some medications that were not available on the PBS and we all struggled financially to keep Tim alive – this is not something I would change or regret but rather a message to our government. This expense was one more huge worry. I must thank Senator Bill Heffernan for his support and interest in our case. It was very frustrating watching all of the other PH patients in different countries on medications that we had no chance in hell of buying. I believe if these were available to us a couple of years ago we would not be at the crisis point we are facing now. During this period Tim was married and worked fulltime and shifted back to Newcastle and bought a house. He saved 2 dogs from the pound (Chloe and Charlotte) and life puddled along albeit slowly. He was obviously not well but with his determination and will to live he pushed himself to live a relatively normal life.He kept his sense of humour and we had some fabulous times even though he was battling PH as well.
2005 - 2006 - The end 2005, things took a turn for the worse, Tim's body started to fail after years of constant high pressures and right heart failure. In November 2005, Tim was listed for transplant at St Vincents but i think he was listed too late. One doctor did not want to list him and i still question if things could have been done differently? I felt we had to fight to have him listed. Maybe a transplant would have come up in that time? Maybe......
Everything was a fight, to get medications, everything . I am updating this now in 2008 and we are all still exhausted and i still suffering from the emotional trauma we all went through.
On the 30th March 2006, our beautiful Tim died at St Vincents Hospital in ICU. He was 26 yrs old and gorgeous. He had continual line infections and died from multi organ failure due to PH and sepsis. Fluid retention was a huge factor in losing this battle. He was told he was too sick for transplant at that stage and he was also told that he would not get back on the list. He needed a heart / double lung transplant. With this knowledge he called us in at 5.30am withdrew all treatment at 7.30 am with his family around and he died at 11.22am. His eye’s stared into mine many times during this period and I can still see the defeat in his eye’s and this image breaks my heart. I am still lost about what happened that night when we were back at the flat in Sydney and the decisions that were made at the hospital – we were not called in!
I did not press him that morning as I believe that he would not have given up unless he was convinced – he fought to live harder than anyone I have ever known. I had to trust his decision and did not want to add to his stress by having a fit and distressing him further. He knew he was going to die that day and all I could think was to keep him as calm as possible – still mothering! His death was swift after all his meds were stopped which showed how dependant he was on them. He faced his last moments with courage and strength with so much valour that I am still in awe of those last few hours. He has shown and illuminated the way for his family to follow when it is our time. I have two gorgeous sons and they can never be replaced. When your child dies it is something that you do not move on from – I am changed forever. He yelled out “MUM” about half an hour before he died – I wonder what he wanted to tell me? It was his last word.
Giving Thanks ; My husband Richard, Tim and Phil’s Dad for the last 15 years has been there for Tim, Phil and I without wavering as a fulltime and wonderful dad for my two boys. Philip, Tim’s brother, has had to take a back seat during times when we have had to put energy into Tim’s fight for life. He has also been a back stop to help keep our home somewhat sane in an insane world, he loves his brother dearly and feels his pain and I love him dearly for just being Phil. We thank our families for their emotional and financial support. All our work colleagues who have been so very understanding in allowing us to put family first without comprising our jobs. Our life friends that are in our immediate space and not running scared. For my internet buddies all over the world who keep me going and give me hope. All the medical staff that just didn't give up and have fought the powers that be to allowed this young man a chance at life. To Tim’s friends who ran a fundraising trivia night to help with the costs of medication and accommodation as well as the contributors to this event. I am so very appreciative to my GP and Psychiatrist for the unending and generous support without this I would have dropped my bundle many times – they kept watch over me.
Finally to Tim – you have been an inspiration to many who have read your journey and posts. You are brave beyond words. You tolerate the most physically and mentally painful conditions that a great athlete could not endure. You were also the test model for many medications and treatment that is now approved in Asutralia, so others don't have to fight for these at least. You, my son, are truly a hero and I love you.
Anyone that reads this that has any questions is more than welcome to e-mail me privately - firstname.lastname@example.org
MEDS – these are meds he has been on most of the time – sometimes they were stopped and started and some he has stopped for the time being, the doses have changed many times. There are also many he has been on recently to try to move the fluid but too many to count so I have not listed them all.
- Iloprost (Ventavis) - he was on half the recommended dose for 2 years due to finances we have had to buy it ourselves.
- Sildenafil (Viagra)
- Aldactone ( Diuretic)
- Dithiazide (Diuretic)
- burinex (Diuretic)
- Cipramil – for Ph not for depression
- Levosimeden – costs $1000 a day when in a private hospital. This used short term for obvious reasons but stays in the body for several weeks.
- Tried Flolan for a few days recently in desperation – we pulled it as it did not seem to help - I think this drug needed to be started a couple of years ago to be fair to the medication. People I know of overseas with similar pressures to Tim due to PE have had good results.
Organ donation needs a push in Australia and your license is NOT a legal document of permission only of “intent” to donate any family member can just say NO and your chance to save a life at your time of death is finished – you need to register with Medicare and you can do that online.
I miss you my gorgeous son. The pain is unbearable. Although I cannot see you or hear you, you will always be my beautiful son. I love you and that is everlasting.
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