Seeking support

[Leenk8]

Hello, I spent 4 weeks in ICU following mediastinitis/pleural and pericardial effusions/septic shock requiring thoractomy surgery. I had collapsed lung lobes therefore was supported by a ventilator. I have been home for 7 weeks now and am slowly recovering.

My pending issues are pain at the surgical site as I had 2 surgeries in the same place. I cannot lift my arms fully. My tracheostomy site looked like it had healed but I spotted discharge yesterday. One of the most distressing things is my hair is falling out and I have a third of it left. I would love some advice on this.

Is there a support video call that happens for the community?

[Sepsur]

we have a meeting on zoom every Thursday evening at 19.30 - a lot of what you are experiencing is something that many of our members have gone through. You are in the fairly early days of your recovery.

cc-sn.org

[BigH63]

Hi Leenk8

As Sepsur righty says you are very early days into your rehabilitation / recovery . When you read more of the members journeys you will see we all have suffered and are still suffering similar ICU related consequences. I personally would not concentrate to much on the arm movement and hair lose, it’s very early days fir you, we the members measure things in months. As much as this is distressing for you, You should be given physiotherapy for you’re arms and hair loss should slowly return(mine is just getting back to pre ICU length and thickness after 8 months ) I have Neuropraxia affecting both of my arms and still receiving MRI’s and consultant appointments for this. The thing I would definitely think you should talk to you’re rehabilitation team about is the discharge asap, this to me is a concerning, call them or email them to get an appointment or go to you’re doctor asap moving forward you should get a letter from you’re rehabilitation team around three months post ICU discharge to talk through you’re admission and treatment needed

Rest assured we have all been through the same things and there is light and hope, we know it’s hard but try and see if you can find things weekly that you can do that you couldn’t the week before, it helps to put things in perspective

I’m sure other members will post to you and affirm what Sepsur and I are saying and give you support love and prayers

Could luck with you’re rehabilitation and please post if you want support/ reassurance, or advice

Love and peace

BigH63

[charliesdad]

Sorry to hear you are going through it so much. My hair thinned out and over the weeks got longer so I looked like a cross between a mad professor and a scarecrow.

My hairdresser after I got home just said I can’t doing anything and we still laugh about it, I have got used to the fluffy hair and just accept it is the by product of being lucky and being here, but that does take a lot of time.