ECMO patient

[sweetyvarshney93]

My father is detected with H1N1 pneumonia with severe ARDS and he is on VV ECMO from past 30 days. His infection has gone now but he is suspected to other machines related bacterial infections for which antibiotics course is running.In between two times , improvements were there but due to bleeding(first time through stool and second time from lungs itself ) worsen his condition back again but those bleeding are in control now.CT was done which shows dense bilateral pneumonic consolidation. After CT , again there was recovery , his tidal volume improved and also the ECMO FLOW was reduced but again from past 5 days there is no improvement, he has stuck to the same condition and even doctors are now not able to decrease the flow. Please any medico or the experienced one related with the same issue , help me out to know whether it is possible that my father will recover or not ? Or how much time it would him to be better again? Rest All the organs are functioning properly. He is conscious but a little drowsy and time to time dialysis is being done for removing fluid from lungs and keeping them dry......Pls help me

[Sepsur]

Hi - I was taken into A&E with strep A Influenza A and H1N1double pneumonia & suspected MOF and septic shock. After 2 weeks it looked like I might pull through - warnings for my family had been really dire. I remained unconscious for another 6 weeks - I picked up numerous other viral and bacterial infections and severe ARDS. My family was again advised to expect the worst. Incubated, on dialysis and every other form of life support - they probed me three times and the consultant had to tell my family that there was nothing more they could do. They had chucked the kitchen sink at me and exhausted every possibility. Wythenshawe wouldn't accept me for ECMO because I wouldn't have survived the journey.

Once I'd woken up - the hard work started ( for me). I was incredibly vulnerable to infection - I still am, a year on. I fitted off antiviral so, picked up glandular fever, discovered I had CMV - which can blind or cause infection & pneumonia ( and we know where that one got us last time) I had VRE - which for someone so immune compromised - can cause infection and pneumonia. I later discovered I had leukaemia. Three days before I entered hospital on 11.4.16, I had been skiing in Austria. I left hospital August 2016. I was in ICU for nearly 100 days.

Most people survive ICU.

[Sepsur in reply to Sepsur]

🤣🤣🤣 predicted text.

I was intubated & I was proned - although I was also probed - 🤣🤣

[sweetyvarshney93 in reply to Sepsur]

Thanx Sepsur from Ur kind reply.....ryt now my family is going thru very hard time....no single day pass without tears....we are still in a hope , expecting miracle ...doctors are saying that whatever maximum they can do they had done already and still that course is going on , now they have nothing to do more than that except wait and watch.

[KDK0207 in reply to sweetyvarshney93]

Whatever you do hun, don't give up. My story is waaay to long to post but I had less than 1% chance of survival after being in a coma for months with ARDS... it goes on .. you can email me @kathykilgore2@gmail..com. I had 7 chest tubes. Etc... don't give up ... I'll be praying for you.

[TheGingerDancer in reply to Sepsur]

Wow!!!! Holy shit. You've been through It!!! Amazing you got through it all. Your words... 'when I woke up, that's when the hard work started'. This rings so true! Not many people understand what that means, but the coma is the easy bit. I'm part of the 1% club too, and the proned and probed! It took 4 years to fully recover as my immune system was shot to shit. Just to say...probiotics are your best friend. Take as many different strains as possible, which will defo help your immunity. Laura

[Rosie_cheeks]

My father went through the same, double pneumonia, severe Ards. He also had a complication with his bowel which meant they had to open him up and drain off fluid. He is 73. We were prepared for the worst. There were small improvements in his lungs but we were told that due to his age and severity he may 'get stuck'. But after 3 weeks ish, they were able to disconnect ecmo. He remained in intensive care for another month with various other issues but eventually moved to a rehab hospital. He has just returned home after 15 weeks in hospital.

There is always hope. The body is amazing and will fight hard.

Good luck, I wish you all the best.

[sweetyvarshney93 in reply to Rosie_cheeks]

Thanx for ur wishes Rosie....we are still positive and hoping for the best

[Devildog000381]

I am really sorry to hear about your father... with that being said I really feel for you as well as your in my shoes that I was in about a year ago. My wife became sick with Micro Plazma Bilateral pneumonia. It's been a year sense she was there and she is now a year later starting to recover back to normal besides being really weak for being down so long. I stood by her side the whole time even through the hardest times when we didn't know for sure if she was going to make it. Some of the symptoms are very long lasting but in time will recover. Symptoms such as hair loss and bad dreams (from the intubation) as she was intubated for 2 weeks. Age has a lot to do with how long. Dr. Said because my wife was young (40) her recovery would be quick. A year to me isn't quick just saying. I'm not here to give you bad news but as hope. I was going crazy because of the unknown.. I was the one asking all the questions.. This is why I love this site because of the counseling. Plz let me know if you have any concerns as I will do my best to help. God Bless your father is in my prayers.

[Luckyone]

I had an unknown form of double pneumonia, severe sepsis, multiple organ failure & severe ARDS a week before Christmas 2010, all I remember is being taken to hospital by ambulance taken into recus and then being in a virtual nightmare world until 6th February 2011 and only know what really happened during that time as my wife kept a diary of that missing time.

I was so critical it was thought I would never survive, my wife told on the 3rd day they were placing a DNR on me as they didn't think I would last the night, thankfully it was removed the next day when the consultant told my wife there had been a miracle and I stable enough to have a CT scan confirming the pneumonia, I had bloods taken every 15 minutes, emptied the drug cupboard and even had a brand new drug, I was on dialysis for six weeks, had respiratory arrest causing 2 cardiac arrests when a mucus plug the size of a golf ball broke away from my left lung blocking my airway for 10 minutes while the doctor fought to remove it, the ARDS caused my left lung to go completely solid along with 2/3 of my right lung but the consultant told my wife all the time he had a bit of lung to work with he would keep trying.

I spent 3 months in ICU with the first 19 days intubated before having a tracheotomy for most of my ICU stay, I finally left hospital on 30th March 2011, almost 4st lighter, 54% lung capacity & post ARDS pulmonary fibrosis leaving my lungs looking like a patchwork quilt, but somehow I survived, my advice would be never give up hope the human body has an amazing way of recovering.

Over 6 years on now and I'm still here with lung capacity up to 87% enjoying life at a somewhat slower pace due to the lung & sepsis damage but I'll accept that over the alternative any day.

I hope your father makes a good recovery and become a member of our exclusive club of ICU survivors.

Bill

[JPNF]

Hi, I'm so sorry to hear your father is so poorly. I am Sepsur's wife. I know exactly what you are going through, I have never experienced a rollercoaster of emotions like it. The situation can change at any moment can't it. I remember at one point, six weeks in, I lost all hope that my husband would pull through , but then I seemed to get the strength from somewhere not to give up, he was fighting so hard. After about 8 weeks i think, He started showing a sign of improvement, but remained the same for about 2 weeks which was very hard and felt like beeing in limbo. The only advice I can give you is to hang on in there and try to hold on to any posative things, even if they are tiny. Look at all the people on this site who have survived, Your dad is certainly a fighter. Look after yourself too, that's really important, because this is a traumer that effects the family also in quite a major way. I think I'm still trying to get over the shock of it all now because it went on for such a long time. Recovery for the patient takes time, so try and take one day at time and not think too far ahead. Stay strong, you'r dad's going to need you, I wish you and your family all the best.

[sweetyvarshney93 in reply to JPNF]

Thanx a ton dear.....ur wishes means a lot to me n my father.....he will definitely recover completely n will soon be back wid us normally