Unsolved Diagnosis

[Joe815]

Hey how are you ?! I come here as a 23 year old scared young man in fear while my daughters mom & fiancé is in an induced coma with a blood clot in her arm along with pnuemonia. My fiancé who is a healthy 24 year old hard working young woman was perfectly healthy and strong with only a minor kidney diffency. Nothing like dialysis or anything. She had regular appointments to her nerfrology doctors in which everything was fine. One afternoon at work she mentioned she had a headache like no other and felt dizziness and nausea. We went to the Emergency room where she was later sent home with a prescription for Meclizine. 2 days later I found her asleep having a seizure for the first time ever. 2 days later she began to have more seizures (focal) while hospitalized. The doctors can't seem to find what has caused this. She was placed in a induced coma to prevent any brain damage from the frequent seizures. While in the coma she had developed a blood clot in her right arm , fluid around the lungs, 2 brains lesions & pneumonia. It's been almost a month now and still no diaganosis. They're about to put a trache in her throat to help the pneumonia but I'm so worried about whatever has caused this. It feels like this has come overnight & I can't deal with this . If anyone has any experience or dealt with something similar please help and share ! Thank you

[Sepsur]

Critical illness came from left field in my case. Two and a half days before I was admitted with a whole list of stuff - I was skiing - I woke up 2 months later, uninjured but totally immobile. I hope your fiancée improves soon.

[Joe815 in reply to Sepsur]

Has your mobility improved im so sorry

[Sepsur in reply to Joe815]

Yeh man, lots of physiotherapy and a refusal to be broken. I spent 3 months in ICU & a further month on general wards. 18months later, I am functioning but not quite firing on all cylinders- forgetful and fatigued on occasion. If you know anything about comas, life support and muscle waste - you’ll appreciate the mountain I had to climb. Your fiancée is young & fit - two massive things on her side.

[Joe815 in reply to Sepsur]

Thanks you so much and glad to hear your doing better thankfully. How long before they were able to diagnose whatever caused your illness and if you don't mind I would like to know what it was because it could be similar. Almost a month in and still no diagnosis. Thank you

[Sepsur in reply to Joe815]

By the time I arrived at A&E I was in septic shock with multiple organ failure. 3-4 days before I had picked up Influenza A & Strep A - still skiing! Got on a plane without knowing how Ill I was on a Saturday ( thought I had a bit of a cold & cough) by then I also had double pneumonia - this was diagnosed rapidly ( it was so obvious apparently that the ICU domestic would have been able to tell what was wrong). I was intubated & put in a medically induced coma for two months. Along the way , I had dialysis for 7 weeks, my kidneys had failed. I was paddled a few times because my heart kept on going into irregular rhythms. I was hand pumped on occasion because my respiratory system failed and they were struggling to keep my oxygen levels anywhere near safe so that i didn’t wake up brain damaged. My lungs resembled liver. Numerous times they assumed I would not survive. I was packed in ice to drag down fever, fed numerous antibiotics, some turned my eyes yellow like Bart Simpson, others gave me rashes and further fevers. Just as I started to recover from sepsis, I came down with severe ARDS. The battle for my life started all over again. I was proned 3 times. During this time my wife was told my respiratory system would most likely be impaired for ever. I had MRI’s & CT scans to see what damage had been done. I picked up VRE, CMV, MSSA & glandular fever in ICU. Each had the potential to knacker me all over again. The treatment and medication for CMV was horrendous- fitting, fevers, profuse vomiting & diahorrea - often before the fitting I would get episodes where I was ‘locked in’. First I would lose the ability to speak, hand signal and or use my eyes to blink communicate. Very scary, at the time I assumed I was having mini strokes - it was a side effect of medication. Further tests for the root cause of my infections continued and thoroughly unpleasant, lumbar punches and long needles through the back into the base of the lungs to test the various fluids.

They were pretty certain I had leukaemia- but it took a long time to 100% guarantee which one I had. My family whilst I was still in a coma, were told I probably had AML. At the time, chemotherapy was out of the question. AML is quite aggressive and would need immediate treatment if I were to survive. My lack of immune system made treatment impossible. Slowly I was weaned off machines, given a trachy( lung drains routinely were horrible). I was woken up to discover I was unable to move and had a tube coming out of ever part of my body. Either delivering something or taking something out. Everything was confusing. I started physio - without knowing the full extent of my miraculous recovery & scrap with death. I started physio without knowing if I would ever walk again. When leaving hospital, I needed a Zimmer frame and wheel chair on occasion. I could walk 50yrds - could not kneel, crouch, run, skip, jump or dance. I didn’t know if I would ever make love to my wife again.

They eventually diagnosed CLL. The most common way CLLers die is from sepsis & pneumonia.

I now have monthly infusions and may start chemo in the next five years.