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Don't Give Up Hope - Miracles Do Happen .... Surviving ECMO

My daughter fell ill on 29th Aug this yr. She was rushed by ambulance to the local hospital. She was placed in an induced coma and ventilated almosted right away. They did tests and found she had influenza A and from that contracted viral pneumonia and unfortunately ARDS. She was intubated almost immediately and we were told by the doctor of the local hospital she had at that point in time, a 50/50 chance of survival. He said she was the sickest person in all of South East Queensland (where we live) and they could nothing more to help her and would need a specialist team to put her on this special machine. So he called all the hospitals to see which ones used this ECMO machine and had a retrieval team, because she was so sick, she would never survive the trip to the other hospital. He found a hospital that was about 1hr 40mins trip from us but the only one that could take her. So at 12.15 am 4 of the top ECMO doctors in Queensland rushed to my daughters rescue. She was operated on that night by the ECMO unit from the Gold Coast Hospital and placed on an ECMO machine. ECMO was her only hope because ARDS prevents enough oxygen from getting to the lungs and into the blood. The ECMO machine replaces the oxygen. She was then rushed to the GCUH ICU and was not expected to survive. Her kidneys shut down just days after and was placed on dialysis over the entire time she was in ICU. She had so many problems and with a secondary pneumonia and the difficulty in keeping her vitals level, she flatlined twice. She was on ECMO for 44 days. The docs told us she had a very small chance of survival. 5% at best they gave her. After being a hairs breathe from death, she survived. We were told if she did live it would be many months of extremely painful rehab. Well after 11 weeks and 6 days in hospital, my daughter came home a couple of days ago on the 19th of November infact. No one even the ECMO doctors can believe she has NO lasting problems. It was believed she would have some brain problems. She has NONE. She is weak but within 3 weeks of physio is now walking with a walker. Mainly for balance. She never needed speech therapy. She did have PTSD and ICU delirium for awhile but that didn't last long. She has had some nerve pain in her foot and leg but pills now have that under control. She has astounded the top doctors and physios. So don't ever give up on your loved one. Miracles really do happen. It happened to us.

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What a heart warming story. She must have been strong and determined. I'm so happy for you and wish her well in her recovery. Today last year I had sepsis and also had my kidneys shut down followed by multiple organ failure after food poisoning. A week's coma and very poor outlook but I too made a fast recovery and today have regained my strength. Miracles fo happen! So good to read your story. Xx

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I am so happy for you and your family and your daughter. We had a similar trauma as a family. My brother’s life was saved by ECMO. He was a fit healthy non smoker and became critically ill with sepsis after Christmas 2017. All his organs were failing and ECMO helped his lungs recover. He was on dialysis. 11 months on he is back to full fitness and for his 2 children and wife and all of us it is the most wonderful outcome. It is important we share our stories to give hope and reassurance to other families.

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Heartwarming story. Thank you for writing it. I’m in a situation where I don’t know if my husband will recover. 8 weeks post anoxic brain injury after cardiac arrest 20 mins. Kidney gfr 20, on dialysis every other day, chest & urine infection, bp meds, seizure meds. No recognition yet or response. Semi conscious. Wakes up looks around like a lost soul then falls zzz for ages. The waiting wondering is horrendous. The not knowing how bad the brain damage is and will he ever be ok again.

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i am so sorry your husband and you are going through this. The not knowing what will happen is one of the hardest things to accept. My daughter, at first also had difficulty waking. She had so much meds in her for such a long time, that she would wake and just stare at the ceiling. We were so worried she had brain damage from the lack of oxygen. She only began to respond once the meds were almost stopped. Even now though, she has almost no memory of any of that, even when she was off most of her medication. I hope your husband begins to respond once his medication is able to be lowered. Just try to take it moment by moment. I will be praying for you all.

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Yes we do - miracles do happen. All the nurses, when I eventually came round, said I should start doing the lottery, I was so lucky to have survived intact. I’ve got a feeling, I’ve already won that ticket. My family too, went through hell as I fought to survive - the struggle for them, ironically, still goes on as they try to reconcile themselves with the diabolical emotional rollercoaster.

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Yes you are right. Many told my daughter to buy lotto tickets also. I told them no we didn't want to be greedy. We already were the luckiest family we knew. My daughter still has some struggles but as I tell her, if she wasn't struggling it would mean she wasn't here. I am very glad you were one of the miracles.

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Maybe your daughter will find identification in this article

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Thank you so much for your post. It’s so similar to my mum. She was transferred from Sunshine Coast hospital to Gold Coast on the 31st of October. She was on ECMO for 53 day. Exact same thing, influenza A, pneumonia and then ARDS. She is now on the ventilator and it’s been a very long, slow road to recovery. Still no where near out of the woods yet as she is so weak and unable to breathe well on her own. The doctors say her lungs are badly scarred - how much lung function she will have, we don’t know. She’s only 64 but otherwise fit and healthy.

The doctors in Gold Coast university hospital are so good at what they do. If not for them, we would have lost mum in October.

I hope we get the same outcome as you.

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I hope your mum will me ok. Unfortunately age plays a major part in how well they recover. They kept telling us that we were lucky our daughter was only 36. That was one thing on her side. They also said lungs can heal very well given time. The doc told us my daughters lungs would be damaged from the ventilator, because of how hard they had to push air into her whilst waiting for the team to come and then during the op for ECMO. She was a smoker prior to this incident and she is an asthmatic also. So her lungs were not great to start with. Due to this it made recovery even more unlikely, but luckily she has no damage at all. They don't understand how she has none but we are grateful. The GCUH is amazing. The level of care is second to none. Thank heavens for them and their ECMO unit.The rehab will be the hardest thing for her. My daughter is still doing rehab. She will be for sometime yet. But she is basically back to normal besides some muscle weakness. My daughter was very depressed when she came out of the coma and realised what was happening. I hope your mum pulls through with no lasting effects.

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Yes they did say age is a factor but seemed to be happy with mum as she’s pretty fit and healthy and had never smoked or had any health problems. But there were just so many things that happened while on ECMO (bleeds etc) and it kept setting her back. I’m fairly certain your daughter came off ECMO just before mum came in as they said the woman before mum had been on it for over 40 days and at the time we were thinking “we cannot do 40 days!” As mum had already been on a ventilator for two weeks and we thought that was long enough. And then she ended up being 53! But we arent giving up hope. They said her lungs had improved the other day, but just don’t know how much scarring there will be. May I ask how long your daughter was on the ventilator for after coming off ECMO?

That’s great that your daughter is having a good recovery. I can understand the depression thing. They warned us about that also. But I truly believe she could be in no better place while being sick. I hope 2019 is a much better year for your family.

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Yes Kirsty was on ECMO for 44 days and they removed that on Oct 12th. She had a tracheotomy in about week 2 maybe 2 1/2 and she still had that when she went to robina hospital then to redcliffe. They took it out on day 2 or 3 of her being in ICU at redcliffe. I think it was about 17 or 18 days after coming off ECMO, that she had the trachy tube removed. She was breathing on her own by that stage and wasnt really using the ventilator anyway. And yes your right she is in the best place. Can I ask where you are from. We are from Bribie island so it was a long trip for us each week. At best it was 1.5 hr trip each way. I can say I wish they had not moved my daughter from down there to up here for her recovery though. I think she would have progressed so much faster if she stayed at robina. They moved her to be closer to us so for our benefit. Not a good move as we found out as the hospital she moved to was so old and archaic and so under staffed. She didn't even get into the rehab part of the hospital. The physio were coming to her room everyday instead. My advise to you is if you come from somewhere that doesn't have a very good rehab or very good hospital, then let her stay down there for rehab. it will be her best option. If you don't mind, i would love to know how your mum is progressing from time to time. I will keep her in my thoughts. And thanks I hope this yr is a much better one for you all as well.

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That’s not too bad! They told us it would be weeks and weeks with mum on the ventilator. Her c02 rises when she breathes on her own as she’s just so weak and they said it’ll take a long time to build up that strength again.

We are from the Sunshine Coast - Mum and dad are from maleny. But dad has stayed down the gold coast the entire time and we have all been down there the majority of the time just coming home from time to time.

That’s what we are worried about. We had a meeting with the doctors the other day about sending mum back to the Sunshine Coast University Hospital. It worries us as that’s where she came from and the doctors are nowhere near as good as GCUH, they don’t communicate with each other. One of the doctors at Sunshine Coast told us it was too late for ECMO! That night, the doctors did handover and the new doctor called the Gold Coast right away and they came and got mum that night. But it doesn’t sound like it’s up to us really. I think they had the meeting as they had heard that we didn’t want mum transferred until she was off the ventilator and they just said they have full faith in Sunshine Coast and that’s part of their service, patients come to them when they need ECMO and when they don’t need it anymore they go back. Yes I will keep you updated, hopefully good updates!

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well ask if she can be transfered to robina instead of going to SCU. She can go their whilst on the ventilator. tell them your concerns. and tell them it is in your mums best interest to be in the best hospital. dont take the fact shes so far from home into consideration because it is not a factor. doesnt hurt to ask. they only sent my daughter up this way because it was so far to travel. If she does come back up here at least the hospital isnt as old as redcliffe so the equipment will be of this era. And hopefully she will get into the rehab unit quickly.

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emrad just wondering how things went with your mum and how she is doing now.

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Hi Sonyah

I just put a post up about mums condition. Unfortunately she got a new infection last week. The drs don’t think she’s going to make

It but we are still trying to hold on to hope. Mum has always said not to turn off life support unless she was brain dead so we can’t go against her wishes. Especially when she’s awake and looking at us.

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oh Gosh Emrad I am so sorry to hear that. Yes I agree with your mum. Don't give up hope until the end. She is definitely tough. She keeps fighting so just keep doing what you are doing and keep fighting right along with her. Is she still in GCUH? I pray she pulls though. Thinking of you all xx

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Yes still at Gold Coast. She was supposed to be transferred last week but then caught the infection.

We feel like they’ve just given up. We can’t give up on her though

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Oh that doesn't sound good. Who is her docs? I hate to think they will just say oh well we can't do more so lets just wait till she dies. I mean if it is her time then so be it but I believe all medical assistance should be given no matter what. I am so sorry you are all going through this. Your mum especially. Thinking of you all xx

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