Hi all. I just wanted to share our story, as I am really struggling lately.
My boyfriend, who is 30yrs old, fit and with no underlying issues has been in the hospital for the past nearly two months fighting the damage done from covid19. He spent first 5 days on a cpap mask then had to be put on a ventilator, and within 24hrs he was put on ecmo as the doctors said he only had hours to live. He stayed on ecmo for 33 days, his improvement started only the last week he was on ecmo, and also had to be put on filtration for his kidneys nearly 3 weeks ago now. He seems to always have a secondary infection, sometimes they don’t know exactly where. He has been off ecmo for 2 weeks now, he was put on nitric oxide prior to the weaning off ecmo which they have been unable to wean off completely, currently he’s on 10mm. He has been on and off on neradrenaline for his heart as sometimes his heart bit falls. As of today he only requires a tiny tiny tiny bit of that as precaution. The wound on his neck of where the ecmo cannula was has been infected and unable to heal properly, he has a bug called stenotrophomonas, and quite hard to treat that infection, currently on the second cycle of Vencomycin. The past few days his liver is not functioning very well according to the blood results but they said that’s not priority at the moment and they want to see if he will improve. He had a failed tracheostomy last week which got blocked by a blood clot and had to be removed, as a result he was again intubated from the mouth. The plan was to have a surgical tracheostomy today, and even though he’s done great during the weekend, they noticed that he is a bit chesty today and has more sputum, contrary to the last few days where he didn’t really have any. They are scared he has a chest infection and want to delay it a bit. They have done all the blood gases and an X-ray so currently waiting for that. He is on a medium to light sedation obviously enough so he can tolerate the ventilator. He is between 30-35% on the vent.
It’s been 48 days since he was ventilated and exactly 2 months since he spiked the fever. I have tried to remain positive, and I knew it since the beginning in my heart that he will make it. I have lost track of the times the doctors told me he won’t make it, the times they said we should withdraw support, and I kept fighting for him. And I won’t stop.
But my heart is so broken, and every complication as the time goes by it’s a massive shock, and I can’t seem to be able to cope. I don’t know if he has any more strength to fight, and we’ve gotten so far now.. is there light at the end of the tunnel?
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MarthaKos
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I entered ICU April 2016 & left beginning of July that year. 57 day coma. 7 wks dialysis, intubated, trachy, CPAP, PEEP, I was proned, suctioned & drained & cathetered.
What started with Avian flu & strep A fast became double pneumonia, sepsis, septic shock and multiple organ failure - heart, kidneys & lungs.
I then contracted severe ARDS or concrete lungs. I was diagnosed with leukaemia, contracted CMV, VRE, MSSA, EBV & glandular fever whilst in ICU. Later steroid treatment for leukaemia flipped me into type two diabetes, I’ve had a pleural effusion, I suffered myopathy, peripheral neuropathy, chronic fatigue, muscle waste on a grand scale, hypoactive delirium. My wife was told I’d had hypoxia so if I ever did wake up, I’d be brain damaged & then I’d die from the leukaemia because I’d be so immune compromised- I wouldn’t be able to survive chemo.
Well I have, 5 months into treatment of leukaemia - 31/2 years after discharge.
You know in your heart don't you he will fight this. I hope you have someone to support you through this . His oxygen level is doing well, as Sepsur says he is young and was fit before all this, you will be amazed at how well the liver can recover . Sending you love x
Thank you Ferham. I am very lucky to have wonderful people around me, yes! Some days are just more difficult than the others. They are having another go with tracheostomy tomorrow as X-ray was clear, let’s hope it’s his lucky day 🤞🏻🙏🏻
Sounds like a fighter ! My dad also got infection from the line in his neck they was doing the kidney dialysis from and a blood clot in his jugular vein . When I spoke to the nurse said it is common in in ICU as although these lines are a source of infection they are what keeps them alive. Once they get over the worst of covid I suppose theses other infections will become more important to treat .
My dad has made great improvements but is still ventilated 9 weeks tomorrow.
I hope your boyfriend is well enough for his tracheotomy and then starts to recover . 30 is no age this virus does not discriminate anyone .
I live in the north west and the infection rate is still pretty bad here yet the lockdown is being lifted more every day . So many stupid people tho king it won’t happen to them .
I wish all the best for your dad. We live in Manchester and he is at Wythenshawe hospital. Yeah nurses and doctors don’t seem particularly worried about the infection, it is quite normal for people who spend that long in icu to get them. Is your dad awake? Does he have a tracheostomy ?
It is so crazy seeing people partying like the virus has magically disappeared.
Yes my dads awake now has been for about 4 weeks . He has a tracheotomy on week 3 , they have to wait till they are stable enough to preform it . After the tracheotomy he had a period where he went down hill a little but then since he’s been more awake fighting it and weaning well.
It does seem two steps forward one back but your boyfriend has probably been through the worst period of covid am sure he will fight on xxx
Yes there is. I feel your pain and I think we all have been or are where you are now. I was told by one consultant it’s like being on a small boat on a big ocean with lots of storms and waves, a few calm bits and no idea when you will got land or what it will look like. It’s the best analogy I have heard. My husband was ventilated for 61 days and finally came off last Friday. He is still in ICU on CPAP, dialysis and has another chest infection but hopefully will leave the unit at the end of the week. During the time on the ventilator he was on the max novadrenaline to support his BP they could give and we went in to say our goodbyes as they were convinced he wasn’t going to make it. During the time he is on his 3rd chest infection, has had 2 like infections, has black fingers and thumbs from the novadrenalin (which he will lose) and acute kidney failure (which they are not sure will ever return). He took two weeks to wake up after he came off sedation and we thought he had brain damage (he doesn’t). There is light but your tunnel may have a way to go. My husband is the longest CoVid patient in ICU in our hospital and once he leaves there will be transferred to another hospital to a renal ward so will be a while before he comes home. We have been to hell and back and the rollercoaster continues, but he has beaten the odds and is still with us. The only thing you can do is take it one day at a time and share your fears with everyone here as we all understand x
I sincerely wish your husband all the best, he certainly is a fighter as he has been through so much. And you are a true hero.
The consultants description sounds legit of what we are going through, at this point I just want him to wake up and fight to get stronger. Thanks for your reply, it means a lot !
Your not alone, currently going through the same journey with my partner, the rollercoaster of emotions is over whelming, I to have found this site very useful in keeping me sane as I can relate to it, I wish all of you the best, I know your pain x
This site is being so amazing, it creates a coping mechanism like no other, to be able to find answers to things that other people don’t even know what it is, and find people you can relate to, it’s godsend 🤞🏻 Wish all the best for your partner 🙏🏻
Hey, I have similar experiences to everyone else with dad being up and down but he is awake and now managing time off the ventilator which 2 weeks ago seemed so unlikely!
Just hang in there, don't give up as he is still fighting and know that we are always here for you to chat to and will be rooting for him to wake up soon!
I am so happy right now, doctor just called he said there is nothing to worry about, he is getting better, his lungs are so improved, his breathing is improved, the X-ray is clear, and he’s doing really good. He will have the tracheostomy first thing tomorrow morning as they surgeons didn’t have a slot available today 🙏🏻🙏🏻🙏🏻
Oh my gosh, I'm so happy for you, absolutely delighted. Once they turn that corner they start to win that battle. Once the tracheotomy is fitted you will see daily improvements. 💕xx
Thank you guys! I was in desperate need on some reassurance that he’s on the right track, sometimes speaking with different nurses every day, and nurses that have never worked with him is so difficult, information gets missed or misinterpreted! I hope he keeps being a fighter, so he can come back to me soon 🙏🏻🙏🏻
Hi guys, I would like to share some good news with you! I had the best morning ever for the last 2+ months. Tony had a surgical tracheostomy on Thursday and everything went well, he’s been okay since only minimal bleeding and they started reducing the sedation Thursday evening. They said that Tony is slightly awake and has been opening his eyes on his own and moving his legs a bit. I had a videocall with the hospital this morning , and Tony opened his eyes, he was looking at me and his sister and even the nurse said, in case you haven’t noticed Tony can hear you and he can see you, his heart rate keeps going up. I explained to him that he is safe, he has lovely people looking after him, he is a hero and soon he will be home with me so we can continue our lives. I told him not to be scared and if he ever has bad thoughts or images to remember my voice telling him that he is face. He probably tried to speak and his tracheostomy bled a bit, but then I said I have missed that beautiful smile of yours I want to kiss your face off, but they still don’t allow visitors, so can I at least get a smile, and he give me a big smile and me, his sister and the nurses started shouting from happiness! First time in 54 days that Tony has been in the icu sedated, that I genuinely smiled and felt my heart warm ❤️❤️
Awww that is lovely and that first smile you get just the best feeling isn't it?
Once dad woke up we started to see small improvements more often and so I am sure Tony will continue to make wonderful progress and you will get lots of smiles from here onwards xxx
It’s like my broken heart suddenly healed! I couldn’t stop crying happy tears, and he knows I’m a crier so I didn’t stop telling him that I’m crying from joy! I don’t think anyone expected him to smile when I asked him after only being on reduced sedation for less than 48hrs ❤️❤️❤️
Aww that is such lovely news , he’s most definitely a fighter am sure seeing you and hearing you will spur him on to a recovery . He has age on his side and am
I just read your post starting from 5 days ago and was totally blown away.
It's a credit to you that you kept fighting for him. The more he is awake the more his fighting spirit will take over, I really do wish you both all the best.
He is okay, he was very very tired both times I videocalled he only opened his eyes a bit. I haven’t got a smile today but hopefully when I call for goodnight later. They have reduced the ventilator support a lot the nurse said they have already started weaning it off and he’s done a lot of the breathing on his own already, and that tires him a lot. His infections are a lot a better, the wound on his neck is pretty much healed, he doesn’t need any support for his heart anymore and his kidneys and liver are okay, only needs filtration cause of water retention. They are really pleased with his progress and hoping that he will continue like that, he keeps doing physio even tho he’s not engaging on commands yet but they said that’s normal as were only 3 days out of heavy sedation. He hasn’t shown any signs of delirium as of yet, hopefully he has a lucky escape, but again it’s too early to tell! He is definitely there, he can hear me and hopefully he can see me and that’s the more important thing !
He is going to be absolutely exhausted, he hasn't had any recovery sleep in over 2 months, the fact you got a smile yesterday was amazing . That first smile is the best isn't ? He is definitely on the road to recovery . When we first saw my husband , he doesn't recall it but we blew him kisses and he blew one back, not for me though just for our daughter😊. The body is so remarkable, when you think of the recovery it has made and continues to heal. I hope he escapes the delirium ,but if he doesn't please know it will clear. What physio are they doing with him ? Honestly I'm so delighted for you , he will be bale to see you and hear you, and if he can't recall it, at least you know he can hear your voice that he will find reassuring and soothing. My husband has had a large physio session today that has drained him, he was walking with crutches today, technique still needs supporting and he is still in awful pain with his feet. He still can't wiggle his toes yet. I'm speaking to them tomorrow to get a doctor to go into the rehab centre to check them . The clinical care in rehab is so different to hospital 😒
Oh I’m sorry 😐 could he not continue in the hospital or even at home? I’ve read somewhere that similar cases they were discharged as soon as they could move a bit and then continued rehab at home and physio, ot and salt were doing home visits? I don’t know if that’s accurate though
They have been doing physio to Tony since day one, they just move his limbs for him, he has had some resistance , and they are doing some exercises so he can cough on his own and use his lungs more. He’s doing okay with the latter. I didn’t understand much when the physiotherapist was trying to explaining to me but it sounded like passive physio and hopefully I will get to see it tomorrow through zoom!
He wasn't ready to come home as he couldn't stand without 3 physio's and piece of equipment supporting him . We are delighted with the physio and OT he is getting. I know if he was at home he wouldn't get as much in the community as he is getting where he is. Our home isn't really conducive for recovery, so for the next couple of weeks, he is really in the best place .It's just the fact the doctor is refusing to go in due to covid !! So any prescription is written based on what the nurses tell the doctor over the phone, once a week . With Tony they are checking he can squeeze and push etc , hope you get your smile tonight xxx
Oh I get you! Are you serious? The doctor is still scared of Covid? And it’s been ages since his first symptoms !
He was really tired so I smile for me , but yeah they are checking but he is not responding really ! They did say it’s a bit early now so they’re not worrying! I think he consumed all his energy yesterday so today he was very tired. His eyes are open tho, and the nurse tried to prove me he is opening them as she put eye drops on his eyes and he squished his face and kept them closed for a while, then he opened them again when I asked him! It’s still very early days for us now, but he’s on the right track !
Yep, the rehab home is 2 minutes away from my GP surgery, My GP normally goes in once a week, but not at the moment . (We had words last week, I told him thankfully the hospital Doctors didn't have that reaction )The OT team at the hospital wasn't aware of it - they are now !! Aww yes Tony is on the right track, it is early days, but each day he will get that little bit stronger, slow and steady 💕
That’s crazy, you would think doctors would know better! I’m really hoping so, I’m getting impatient now, but I know it will be a long and hard process, I so wish I could visit him at least 😓
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Hey, he is okayish. He had a rough start to the week, he was in a lot of pain, they’ve done a ct scan and they found he had acute pancreatitis. They’ve started fluids and antibiotics and they think they caught it quite early as his blood tests were and have been okay. He is been off filtration for two weeks now and his kidneys are almost back to normal, everyday they’re getting better and he hasn’t needed any support or medication since. His heart is holding on okay now, has been off the nitric oxide for two weeks now and they’ve stopped all medication that was supporting his heart on Saturday. He had managed a couple of full days with the cuff off on the tracheostomy and oxygen requirement on 22% and managed one hour with trach mask on Monday but then he got be Very poorly and they put everything on hold. I spoke to him today on FaceTime after two days, cause he was mostly sleeping the last couple of days and was in pain and tired so they didn’t FaceTime me, but today he was proper awake. It’s been two weeks since they reduced the sedation he is still on a bit but he’s been awake since day one, obviously getting more alert each day. But today he was proper awake, he was trying to talk but we couldn’t understand anything and it was frustrating and upsetting for him and us as well. But he managed to send kisses and cracked a couple of jokes, his sister asked if he’s happy to see us and he shook his head like saying nooo and then he started laughing. He still can’t smile properly but he’s moving his lips and mouth more and more each day! He is extremely weak but again he’s getting a bit better each day. A bit of a setback this past few days but he seems to be getting over it! Hopefully he will get there, he seems to be recovering well, and the doctors and nurses think he escaped delirium he hasn’t shown any signs at all.
Gosh what an improvement since we last spoke abd given the setback over last few days he sounds like he is in good spirits and that positivity will get him on track and conitinue recovering very quickly!
So glad he escaped delirium, I really found it emotionally hard when dad was delirious!
Dad is doing well, definitely completely himself now and no delirium. Bit forgetful at times but that's fine.
Just getting physio started so I think that will make him feel good about things as otherwise he is bored! If only he realised that boring is good compared to the rollercoaster he had been on for last 10 weeks!
Oh amazing, glad your dad is getting there! Is he getting rehab in the hospital?
I am trying, it’s definitely so much harder dealing with the complications now. I’m trying to prepare for our next fight, which I already find emotionally draining 🤕
So pleased he is getting stronger everyday, and oh boy he is so lucky he skipped the delirium.
Remember he is exhausted , but each day he is coming back to you. His oxygen level is really great , and his humour hasn't been affected if he is cracking jokes . I have been thinking about you both lots.
You have fought this fight already, you will dig that little bit deeper and find strength you didn't know you had , gosh knows where we find it from , but we do . xx
Thank you Ferham, same from me. When I pray and when I send positive vibes to Tony, I always include all your loved ones, all the lovely people who are in the same situation as us. When they are all well and recovered we should all meet, god knows where we get the strength from but I’m sure the group of people here has played a key role!
How is your husband doing? How’s his mood ? I worry about Tony, tonight he seemed so low, I think he keeps looking at himself when we FaceTime, the nurses say he is very eager when they ask him if he wants to FaceTime me but something changes after. I know it’s normal, I wish I could help him some other way than being positive and smiling and saying that everything will be fine 😖 I find that period of him being more and more alert and me being away the toughest to be honest 😩
Oh Martha , I'm sending you lots of virtual hugs here ❤
It's so hard for you as well as Tony. When my husband got stronger he got very upset for me and our daughter about what" he put us through". He still gets emotional about it now . Like Tony, Michael has low days , yesterday was a low day for him and that cripples me emotionally as I feel unable to help and take away the pain he is in.
Like you, I remain positive and upbeat with him and try to shield my fear . We are both finding it hard not being able to visit .
Once Tony is feeling stronger and has access to his own phone it will get easier .
I love the idea of us all meeting , if you ever need to talk/rant/cry i'm here for you. xx
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xxx
Dad is in his 4th week on a ventilator after Septic shock
Day 7 in ICU with multiple organ failure
Any ECMO survivors here? 
Organ failure
