Covid survivor 12 months on still with long covid❤️‍🩹

[Ladysurvivor1]

Hiya last January 14th I was admitted to hospital after my daughter who had just completed her 10 days covid isolation ( there were a few members of my family who had contracted covid so we were all self isolating in our own rooms)came into my room and said to me I was breathing to fast ( which I was unaware of at the time) after ringing 111 & also speaking to relatives my daughter went over to my gps surgery to borrow a oximeter . to our horror the reading was 72 , we were told to call 999 as a matter of great urgency . I still thought my breathing was fine & as I suffer from asthma I thought maybe I might need a nebuliser. At hospital I was tested for covid and it came up positive ( I had a pcr test a few days before this & it was negative) so I was surprised as i truly believed I had no symptoms of covid.

After monitoring me for a short while the doctor came in and told me I would need to go to Intenstive care and be put in a induced coma , and was there anyone they could ring ? I honestly couldn’t believe it & it didn’t really sink in until they put the needle in my arm.

2 months later I woke up but was terrible confused , I didn’t remember where I was or anything infact . I had tubes coming out from everywhere & I couldn’t speak as I had a tubes in my throat it was so surreal. Whilst in a coma I had been on a journey with lots of events going on which I still struggle with now as to me they were real & seemed real but I was told otherwise .after recovering I was moved out of intensive care as they slowly weened me off all the drugs they had me on , I suffered delirium for sometime

Once I started to get my faculties back and was aware I was in hospital & why I was then told what I went through & how lucky I was to be alive I had suffered multiple organ failure, phenomena, sepsis ,seizures,& two blood clots on my jugular vein , & was still on kidney dialysis, my family had been told that they had done all they could do for me so it really depended on if I was strong enough to fight which I’m proud & happy to say I was by the grace of god I made it .

I did not realise all the extra problems that can be caused by having covid.I had to learn to walk again ( I’m still using my frame & wheelchair)

I was unable to talk/ swallow properly as where I had the pipes my tongue was swollen, I became in continent and once home needed a team to look after me.

I have suffered a numerous amount of chest infections so I have to take steroids & antibiotics,I also have bad back aches if I try to stand too long,I now suffer with severe anxiety & PSD Iam supported by my physio therapist , occupational therapist, speech therapist, psychologist, lung specialist,,respiratory specialist, cardiologist (as I now have a murmur & enlarged heart ) I also suffer from hypertension & Tinitus which I had before covid

Despite all my complications Iam happy to say (“im still here !!!!& im so grateful) there are so many that didn’t make it .

My plan for the future is to pray for a full recovery both mentally & physically to get my full independence back to support my three grown up children who all have life limiting illnesses ,ranging from thyroid cancer to type one , diabetes ,isovaleric Acidaemia, & full sickle cell & also to complete setting up my charity.

Final thoughts

Covid has really change my life. , i think more awareness should be done so individuals know the full impact of what what they could potentially be left like afterwords so it would be such a shock for others

[Gooddaysunshine]

Well done, you are a fantastic fighter. Thanks for sharing your story. I agree there should be more awareness about what severe covid leaves somebody with. It is a total package of debilitating symptoms.

But having seen people die around me in ICU during winter 20/21, like you I am also happy to be here.

[Ladysurvivor1 in reply to Gooddaysunshine]

THANKYOU and yes Iam so happy and forever grateful to still be here 🥰🥰

[Laliiii]

I'm reading your story and it's like I'm narrating my own story., I'm so happy for you that you made it out., even though we still are going through challenges but we are alive., my life completely changed after I got covid., I went from being independent to dependent and no longer can do the things I use be able to do for myself., God bless you and bless your journey to a full recovery.

[Ladysurvivor1 in reply to Laliiii]

Thanks for your message it just makes me feel so much better knowing that there are others out there that really understand our covid experience & the journey we are still on. Iam so grateful for still been given another chance at life and really do count my blessings everyday life was always precious to me but now it is super super precious. It’s onwards & upwards for us as we carry on with our covid journeys 🥰🥰

[Laliiii in reply to Ladysurvivor1]

Most definitely., we are super blessed many didn't get the opportunity we got to come back home to our family.

[Copse77]

You have been through such a difficult time and it is admirable that your thoughts are focused on supporting your children and setting up a charity. There is a support network for ICU patients and relatives run by Chester group. Sepsur is the chap who leads on this. I will try to find you some details.

[Ladysurvivor1 in reply to Copse77]

Thank you so much my friend any support will always be appreciated 🥰🥰

[Copse77]

Here is the link to the support group from Sepsur posts. cc-sn.org

[Ladysurvivor1 in reply to Copse77]

THANKYOU so much I really appreciate it 🥰

[qmcsurvivor]

Thank you for sharing your journey which is very similar to mine, Just 1 day over a year that I was discharged from hospital and had to learn to walk, swallow and even breath again, I work in the NHS and although returned on reduced hours in mid June 2021 I still struggle on a daily basis and normality as it was before remains damaged.

I am still under varied consultants and the hospital staff in Nottingham during the bad time were amazing however I feel it is difficult to know now how to get support and feel isolated.

I had horrible delirium when ventilated and have flashbacks still, as a frontline worker I feel let down by the government who should have closed the borders then so many of us would not be as we are now. Best wishes, Phil in Nottingham.

[Ladysurvivor1 in reply to qmcsurvivor]

Hi Phil lovely to hear about your journey which is extremely similar to mine. I totally agree about the delirium even after coming out of the comma was so crazy. I still have some experiences that I feel were so real it’s just so strange. Iam still experiencing flash backs too especially if I hear loud sounds or when Iam asleep. I think also being without my family around me in hospital probably made my recovery in hospital longer. It really does hurt me to find out now the leaders of this country had so many rules for us all & were doing the total opposite , partying & having social events absolutely ludicrous , inconsiderate,& very disrespectful to us all. They have really let us all down .

Have a word with your GP about support you can get within the community. I have a weekly psychologist who rings me for a hour to speak about anything & does a weekly questionnaire with me to see how Iam coping & if I have any concerns. My Gp also rings me weekly as I have a few concerns with my heart, hypertension & kidneys. I also have physiotherapist who helps me improve my mobility & help with my hand movements due to now having corporal tunnel in both hands. Iam also setting up a charity which I want to do virtually so people like us who have experienced Health issues or disabilities that cannot be seen can get to know & speak to each other on a regular basis. I set this up purely because of my three children’s illnesses but now this is extended to Covid and obviously loads of other illnesses that cannot be seen . This will be a relaxed platform where people can get together , spread awareness & spur each other on.

I have a Facebook page called “our invisible word” if you are on this look me up and I will add you to this private group . We are all in this together Phil

Sonia

[qmcsurvivor in reply to Ladysurvivor1]

Hi Sonia, I really hope life is improving and we really all in here are fighters, I just updated my ongoing journey and currently off work again possibly will have to be redeployed but at the moment fatigue is winning again.Best wishes, Phil.

👍

[Greenwich2]

Hi Ladysurvivor1. I have just joined this forum and your story struck a cord with me as it is very similar to mine. I have Ling Covid now following a 12 week stay in Hospital after being diagnosed with Covid last September. I spent 47 days in ICU in an induced coma and came out with the same side effects as yourself. I am now home rehabilitating but it’s a long slow process. I had a kidney transplant 11 years ago so I knew I was at risk of catching Covid.

Like yourself I am on permanent oxygen and haven’t regular physio It has been life changing I am working towards becoming back to my old self.

[Hidden]

Hi. Most of us that survived feel very lucky as there does not seem much logic between those that pull through and those that sadly pass.I had covid mid 2020, and contracted when in hospital, where I was recovering in a ward from a 4 week spell in ICU with an infection and sepsis.

Returned to ICU with Covid, put on a ventilator and sedated for 4 weeks then had a trachy. Eventually out of ICU after 10 weeks. I was transfered to a community hospital for physiotherapy for weeks to get me back on my feet.

Over a year later I still have fatigue and now starting a program with my hospital for long covid treatment. Early days but feel positive that this is now being looked at.

While in ICU I had delerium, and had very vivid dreams which took me all over the world.

I am also left with CKD from the original illness.

The doctors and nurses did a great job,even though they were learning on the job as Covid was still relatively new when I had it.

I obtained my hospital notes and that helped understand what happened, as of course I lost quite a few weeks.

Takecare and pleased you are making progress.

[Ladysurvivor1 in reply to Hidden]

Wow this is so similar to me! I’ have only just been referred to the long covid clinic which Iam looking forward to🥰I wish you all the best on your long covid journey

Keep me updated on your progress

Sonia

[Tedsdad]

I do identify with your experience except in my case it was a post cooperative blood clot in the heart after ooen heart surgery that led to my ICU stay. I don’t think you can explain it to anyone who hasn’t been through it. I wonder if it is the ICU experience rather than covid which is the really significant thing. Knowing that you life has suddenly been divided into before and after ICU is something that those lucky enough to have avoided it can probably not really understand. I am a year on now and still not fully recovered although I think I am probably as much better as I am going to get. I think as much as we can’t explain our ICU experience to anyone else adequately it is as important not to waste our time trying to make too much sense of what we have experienced and attempting to explain it to ourselves. There are places I visited , where I would have been happy to have stayed and it took a bit of accepting that these were drug inspired illusions.I was handled very gently but firmly and professionally to help me regain my sense of reality.Biu I have been able to create a new normal,as much as anyone can in these covid days, but Inthink it impoRtant for those of us in recovery from ICU to remember that oour recovery is not in normal times.