Hi everyone, I’ve been meaning to write this post for days, but life is very hectic at the moment!!
So after 117 days in hospital Tony is finally home!
Tony is 31yrs old, previously fit and absolutely healthy, no underlying health conditions.
He spent 93 days in ICU, 10 days in a normal ward, and 14 days in rehab. He first showed signs of COVID19 on April 2nd with a very high fever, coughing started after 7 days. He was taken to hospital on April 9th. He was put on a CPAP mask for 5 days before putting him on a ventilator. They gave him 10hrs to live but thankfully he was eligible for ECMO and was put on it within 24hrs of being on the vent. He spent 33 days on ECMO, he was on an induced coma for 51 days, remained on the vent for a total of 87 days, he was on dialysis for 3 weeks as his kidneys failed, he was on nitric oxide for nearly a month as his heart was not strong, his first tracheostomy clotted and blocked his airway completely, so it had to be removed and he had to be reintubated from the mouth. The second tracheostomy had to be done in the theatre. He had every infection and bug there is out there, including CMV virus, he had a very severe case of acute pancreatitis, his liver failed, he was on a feeding tube for 3 months.
He had to learn to do everything from the beginning as the muscle wastage was phenomenal. It took him three weeks to properly wake up but thankfully the delirium and nightmares wasn’t too bad.
He has developed diabetes and needs insulin twice a day, he is on medication for his heart as his heart rate is high, and he has liver issues which we don’t know yet how severe or if it is permanent. He is left with scars everywhere, but we embrace them, and he actually shows them off 🎉
He is getting stronger everyday, he is just unable to eat too much he is still losing weight (he has lost more than 30kgs so far) and we think it’s due to the liver damage. We take everyday as it comes and we celebrate every victory. A week after being home, where he couldn’t even walk around properly, he’s been climbing the stairs up and down with his weapons (crutches) we go out daily, and we spend most of the day in the garden with the neighbours. Not every day is a good day, and not every moment is pleasant, but he is alive and we are together!
Thank you everyone for helping me throughout these awful 4 months, the most horrible of my life. I have met some amazing people here, that I consider friends, and without them I don’t know if I would be calm and content now.
Don’t ever lose hope 💪🏼🙏🏻❤️
Written by
MarthaKos
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What a tale & one you know I know well - there is a mirroring of Tony & my journey. From the nasty little contributory infections like CMV to me becoming type 2 diabetic for a time later on after steroid treatment for various complications to do with leukaemia - I lost a lot of weight whilst the diabetic nurse got a grip of which meds would control it.
Recovery takes a hell of a time but he has youth on his side. None of us know for sure how much faculty we will regain. The physio supposed I might never gain use of my hands & fingers, might never walk properly, might never work, CMV might blind me and these were legacy issues not even the life threatening problems that got me into ICU. Who knew whether severe ARDS would knacker my lungs, whether my heart would repair or my kidneys. All of them have repaired brilliantly although I’ve had complications with leukaemia.
I hope both your journeys carry on without incident and that Tony regains good health.
Thank you so much, for all your help as well throughout these months. We never know what tomorrow holds in store, and both me and Tony realised that, so we just take it one step at a time.
We have a long road ahead of us, but determined to face any difficulty 🤗
I was overwhelmed when I read your post. It is so important to never give up hope. Just enjoy Tony being home now. It’s going to take time but he will get stronger gradually each day
All good news both Sue anI have been following this part of your life. I know you have been in contact with ICUstepschester And Tony will be most welcome to join us on zoom when he is ready. On Thursday we specifically meet as a support group you can join in chatting or not it is entirely uptoyou. For Tony it might be good the hear similar success stories.
When he is ready he might enjoy the comradeship from the exercise and or yoga classes. These you do at your own pace. I’ve been doing them for8 weeks now and I have up graded my weights from small can of peas to baked beans and I am now on .5 LT water bottle 😂. I can lift a boiling kettle safely and I can stand out of my chair. There are some things that the others do that I can’t. The yoga helps breathing and strengthens your muscles around the vocal chords Although I still have to be careful.
Oh he will definitely, he knows about all the groups and he is very excited to join them, hopefully from this week coming. He made a brief appearance last week on the relatives group and he loved it x
My husband who is also 31, has been in icu for 6 weeks and still not waking up. He was also on ecmo for two weeks at the beginning but his doing fine without ecmo for the past 4 weeks. The only thing is that he’s not waking up although they haven’t been giving him any sedation for weeks now.
I believe in miracles and your story just gave me more hope. Can’t wait for him to wake up.
Thank you for sharing your experience and wish you both the best!
Just keep believing, it seems so far back that I was in your shoes but it was only 2-3 months ago. Trust me it does get better, everyone used to tell me, but now I know. With the sedation it takes time and everyone is different. Tony opened his eyes, but he wasn’t awake until 3-4 weeks later. Hope everything goes well with your husband, and take care of yourself xx
In reply to your post my dad was off sedation for four weeks or so before he began moving. Continue having patience and a lot of prayer and meditation and crying a lot of crying let it out it’s good for you. Send you a big hug 🤗
Thank you so much. Every time I see a memory and think about him, I can’t stop crying.. But I do believe in miracles and can’t wait for him to wake up xx (wish we could actually hug each other, the support here is amazing. I actually feel much better when reading stories) xx
Hi Martha. I’m delighted to hear he’s on the mend and that you have such a positive attitude. I had coronavirus too and was on a Ventilator. I was not in hospital nearly as long as your partner and I’ve been home now for about 14 weeks. Please feel free to contact me if you think I can be of any help. Have a good weekend Pete💙ventilator. I was not in hospital nearly as long as your partner and I’ve been home now for about 14 weeks. Please feel free to contact me if you think I can be of any help. Have a good weekend , Pete x
Like others I've been following your story and it's great to hear about Tony's victory over Covid. You've been through tough times, so here's to continuing strength and recovery 💪🙏
I am very happy to read you and Tony’s journey and happy he’s home God is good and Tony is a miracle I too will post about my dad he is alive after almost four months The doctors said only a miracle and he is a miracle and so is Tony my dad name is Tony too send you a big hug
this is absolutely amazing news - well done to Tony for being an absolute trouper, and well done to yourself for being such a supportive figure in his battle. may his recovery be speedy & your future bright 🤍
My father is on his 5th week in hospital, ventilated from day one and was placed on ECMO 2 weeks ago. We are still very much in the woods as his lung is seriously damaged and the doctors are considering a transplant. We remain hopeful
my brother is there same boat, he is on day 17 on Ecmo and doctors want to give up on him!!! They said Ecmo is on the highest setting and he hasn’t shown any changes. Anyone can give me hope???!?!? Please?!?!? I won’t give up on hope on my brother!!!!
Tony was the same on his 17th day. No improvement whatsoever. He started Improving very very slowly after day 25. Hope everything goes well for your brother, hang in there x
Thank you so much your story giving me hope! Last question not sure if your recall what level Ecmo was on 17th day? Or on day 17 was he just high setting in everything? I know you may not know all these detail! Looking for hope
Ugh today they told us he may have internal bleeding they will have do a cat scan to see where it’s coming from! I pray it’s something they can fix quick and he can continue with his recovery 🙏🙏. We thought he was getting better and bam. So dreadful 😔 so now we wait to see what’s going on
Oh I’m so sorry, hopefully they can figure it out quick and treat it. This road has a lot of ups and downs, unfortunately it is never a straight line. Just hang in there.
Thank you! So they did a CT scan and didn’t find anything...they found a hemoglobin but not sure if it’s big enough to worry about. He is back at 100% oxygen today 😔 lately wish I could see the turn to better but ugh! He needing more blood transfusion but they said could be the Ecmo machine not him. It’s heart breaking! I
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Any ECMO survivors here? 
Covid 19 3 months sick again
Waking up from deep sedatives in ICU.
