W&W SEPSIS

[Fastbike14]

My twin brother is on watch and wait. He had a minor day case operation to remove a small cancerous lump. 36 hrs later he was readmitted with sepsis. He's had an 8 week fight for life with 4 more operations to remove tissue being attacked by a flesh eating bug which had to be notified to the WHO. He came home a week ago and is recovering at home. Amazing to survive this terrible time. CLLers are tough amazing people

[bennevisplace]

What a nightmare to have to live through. Apparently that kind of bug is very aggressive, hard to stop, often causes sepsis, and around 1 in 3 patients don't survive.

Although he can count himself unlucky to have caught such a rare infection, in terms of the outcome you and your brother have much to be thankful for.

[Sepsur]

let him know about cc-sn.org

They offer a lot of support, I also know a couple of members have CLL 😜

[Fastbike14 in reply to Sepsur]

Thanks for this website. He's doing well and using skill he learnt from CBT course he did after his 21 day covid hospital admission

[Poodle2]

That sounds horrific. I'm relieved and happy your twin brother is on the mend. 🙏🏻

[Graham64]

That's awful. Hope he is much better now. The last two times I was in a UK NHS hospital I caught urinary tract infection and severe chest infection. The standards of cleanliness in the NHS get lower and lower.

[Fastbike14 in reply to Graham64]

Thanks for your reply. My brother was only in the operating theatre and not on a ward when he caught this bug. That is a worry!!

[Graham64 in reply to Fastbike14]

Absolutely. I had partial kidney removal and I'm fairly sure the urinary infection also came from the OR

[ViPOR]

yes, you and your brother and people with blood cancers are Strong! I am glad that your twin brother is getting through this! When. Pregnant with me ( I am almost 77 this June), my mom lost my twin. It is not as uncommon as it sounds. Thankfully in those days her OB doc did not do a D and C. So when she went back to him, she had been gaining weight and that was me. I was a hard birth, a footling birth where coming out, Input one leg out first but drew it in and came out bum first. Plus I was small. I think you are so lucky to know your twin! Bless you and your twin and prayers for Health for both of you!

[Fastbike14 in reply to ViPOR]

So sorry you didn't get to know your twin. My mum was 42 when she had us. We were forceps delivery one bum first and the other feet first xx

[W00dfin]

My WW ended with sepsis and a month in hospital 13 years ago. Yes we’re tough!

[ornstin]

I think your brother was really exceptionally unlucky to get the horrible bug but quite lucky to survive I have just been reading a paper about Necrotising Fasciitis in a London specialist hospital in which it is stated that the incidence in the hospital of NF between 2006 and 2011 was 0.003%. There are almost certainly many other papers on this subject.

I think the overall survival rate with treatment is 20-30%.

Rather terrified as I am meant to be having surgery at some point (receding into the temporal distance).

[Fastbike14 in reply to ornstin]

Best of luck with your treatment when it happens. He was s you say very unlucky. He has his kids around today for father's day. Still in a lot of pain and a long way to go

[PaulaRichmond]

prayed for your brother’s healing.

[Fastbike14 in reply to PaulaRichmond]

Thanks for your prayers. Friends from all over the world 🌎 have been doing the same xx

[Mwagner]

I’m glad your brother is ok. Several years ago I came down with pneumonia and had to be admitted to the hospital, after my wife forced to go to the ER. They diagnosed me with pneumonia that was on the edge of going sepsis. The ER doctor said if I had waited another day I wouldn’t have made it. Sepsis is nothing to trifle with!

[Fastbike14 in reply to Mwagner]

You are so right. Just before discharge my twin was visited by the critical care consultant along with a gaggle of junior doctors. He said he was very lucky to have survived. We have to advocate for our selves which takes us back to the original post on the subject of sepsis when the ambulance were not keen to take a seriously person to hospital. Never take no for an answer!!

[Mwagner]

Also, as a result of my pneumonia my doctor prescribed a battery of bloodwork that found I had CLL. Thank God I’m on watch and wait, no medications. Every day above ground is a good day.

[Fastbike14 in reply to Mwagner]

Most of us find out about our CLL by a chance blood test. Was diagnosed 2006 and first treated 2011/12. That was back in the dark ages treatment wise. To be honest my current stomach problems are causing me more distress than any of my previous treatments

[Mwagner]

My doc said I’m more likely to die with CLL than from it. But it still lingers. The mental part seems worse for me

[Fastbike14 in reply to Mwagner]

Your doctors right and this is even more true with modern treatments. I've spent the last 26 years working as a mental health social worker so know the toll mental health can have. Trouble is worrying about something doesn't make anything different. I found that it helped me to cope by considering all factors CAF. What is good what can I do to have an impact on my health and what can I be in control off. If I can't alter my situation then I move into something that will. Such as hobbies, good diet etc. Of course there is a time for worry and upset but you have to let it go

[Mwagner]

Worry is like a rocking chair, lots of to and fro, but doesn’t get you anywhere

[Doggoneit101]

I've been septic 3 times in my life. The last time was the worst! Necrotizing fascitis infection after appendix removal. It happens soooooooooo fast. Gotta keep a close eye on symptoms and take care of things immediately.

[Fastbike14 in reply to Doggoneit101]

Amazing that you survived. Really are a warrior

[Jilkat]

Very glad your brother is home and recovering! How scary. I don't know if things are different between UK and US when it comes WW. I've been WW for 5-yrs, numbers are stable It was a day case to remove a tumor that turned septic? What type of leukemia? Thanks

[Fastbike14 in reply to Jilkat]

Hi Jilkat, yes it was a day case to remove a small tumor from his buttock and some of the tissue around it. He had 22 stitches. 36 hrs later and 4 more operations he was fighting for his life. He has an open wound 6inches by 2inches and an inch deep. He has CLL the same as me but not treated.

[Big_Dee]

Hello Fastbike14

Amazing story of resilience to overcome adversity. We CLLers are blessed to have continual monitoring of our health. Wish your brother the best recovery.

[Fastbike14]

Thanks Big Dee I will do so.