Encouragement and a question

[Mumptie]

Hi. I've been waiting at home whilst my husband recovers from Covid. The history is:

5 weeks fully sedated ICU; tracheostomy fitted; 3 weeks to fully wake up; 2 weeks with MRSA; transfer to Renal unit for 3 weeks. Weakness on right side - no grip in hand and sore shoulder. Kidneys not working well. Stepped down to general ward this week for rehab. Not able to stand but can sit in a chair for 2 hours.

So there is light at the end of the tunnel but it takes time.

Today I overheard a Renal Dr tell him that his kidneys were still not functioning beyond 11% - he did have MOF under sedation. She bluntly told him that it was likely he would be on dialysis due to this.

Given that he has only been fully awake for 5 weeks and had MRSA infectionIan that time, I think this is unduly pessimistic. From reading others stories it would appear that kidney function takes several months to recover.

Would appreciate your thoughts.

ps Given that we were told twice that he was unlikely to survive, we would be happy if he had to have dialysis as he will be coming home sometime in the future.

pps I have not seen him since 25th October although we can now talk 2-3 times a day.

[PeterJu]

Hi. Thank you for posting this. It was brilliant to see that despite the obvious challenges, your husband has been so resilient and so have you. I was in ICU with covid and on a vent, although for a much shorter period than your husband. I cannot answer the kidney issue. Do you know if he was proned in icu (where we lay on our fronts in order to assist our lungs)? Many of us, including me had aching shoulders as a result of this for some time after leaving hospital.

I think you are right to stay positive and just take each horrible challenge as it comes. A consultant told me ICU was just like dealing with a fire. You go to the biggest and most pressing health fire first and then deal with the rest as is needed. I hope you find this a helpful analogy? Wishing you, your husband and your family the very best ! regards, Pete

[Sepsur]

I had multiple organ failure inc kidney and remained on dialysis for 7wks / my kidney functions is fine / there was fear that they wouldn’t work properly- I’ve been on heavy duty drug treatment for leukaemia requiring me to drink atleast 3 litres of fluid a day to flush kidneys - over the last 13 months. I was on steroid treatments prior to this that flipped me into type to diabetes - all things that batter kidneys - numerous ct, mri & pet scans since ICU four years ago. I can’t tell you that this will be the case for your husband but do believe that we are not all doomed. My lungs repaired almost fully as did my heart that failed too. Again the treatment for leukaemia has put all these to the test again. My resting heart leaving ICU was 130 - today it is a very healthy 51.

With regards to muscle weakness, I am right handed - I am now weaker on my right side. I don’t know if this is because there was proportionately more muscle to lose on that side and that is why I feel weaker(?), The shoulder pain is probably down to proning. I couldnt lift my arms, scratch the back of my head for months. The physio gave me very specific exercises

All is all my family & I took the stance that I’d live with any difficulty because I had no chance of survival. Treatment for cancer takes its toll but so does old age.

Your husband may love you for eternity- if you managed to get him an additional cushion for when he sits out for the torture of 2hrs

[FamilyHistorian]

I was very weak on my right side and now 11 months later I am still weak but much stronger. My achievement was to be able to boil a kettle and make a pot of tea safely. Then I moved on to standing up from a chair without using my hands which I can also do.

I am 6’ 3” so making sure the chair was the right height was important. My physios gave me access to a piece of equipment called a pulpit. This aided me standing up and then walking it was like a giant Zimmer frame. Unfortunately these are quite expensive pieces of equipment and are few and far between.

I can’t answer the question about the kidneys I had enough problems as was.

But like you I had the same attitude to coming home even if there were long term consequences. My family had the call twice! At one stage it was thought that the trachy was going to be permanent and they were trying to find a mechanical voice that was nearest to mine. I really wasn’t bothered so long as I had a voice. Well that fear never came to fruition and I am back to normal although my distinctive laugh has gone.

[LeeB73]

I spent 2 weeks on vent with Covid, one night stepped down to the ward, got secondary infection and MRSA and straight back on vent for another two weeks and a trachy. Prone most of the time and close to dialysis and twice very close to family getting “that call”. I managed a week or so on the ward before coming home extremely weak, and only because I had support at home.

I also had some paralysis in my right arm from shoulder down due to being prone and this affecting the nerves. I came home at the end of April last year and it took many months for my arm to start to recover. But it takes time. You have to do the physio and I found keeping a physio diary helped to see progress over time. What seems like the smallest improvement is, for the body recovering from ICU, huge and all those small improvements make a massive difference in the end.

That first period after waking up and they’re trying to get you out of bed to spend some time sitting up in a chair is the hardest, but the body is an amazing thing. It just takes time.

There is light at the end of the tunnel and it sounds like your husband is doing very well.

[GabiNick]

They told me that my husband was going to probably need dialysis also. Then a wise nurse decided to take it on herself to check the tube that he had for urine and she said when she took it out there were a few blood clots. She replaced it with a new one and now he is great tons of urine no more need of dialysis. I hope your case will be as easy as ours was.