My PCP has been big source of strength for me too. But what a shame other physicians and other staff are not.
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You don't sound selfish at all. I have 3 children and now 6 grandchildren, so I know they come first. I was 62 when I got ill. But your life does change completely. I had to step away from previous friendships bc they thought I could step back into my previous life, not understanding barely walk. I had been a long time Girl Scout volunteer. Some of the people even ( I'll never know who) even tried to get me removed from my volunteer position. That was painful. I can only guess bc I wasn't at their beck and call like I had been before. A Board member stepped forward and vouched for me and the CEO actually apoligized to me. I changed the area where I volunteer. I'll be helping my daughter with my granddaughter's troop, and I still help with fund raising. But it does feel good to give back in the fund raising department. I just have to pace myself.
I would contact the PICU you were in. I have been retired for a while, so I don't know if the PICU I work at had such a program. I know the adult ICU at the same hospital has no aftercare program. It's a real shame that no all hospitals recognize the stress involved an ICU stay no matter the age of the patient. I have tried and tried to the hospital officials where I once worked about an aftercare only to be shot down and told I didn't know what I was talking about. It's so frustrating. I go to personal therapy – one on one. That helps. But I know the same mistakes with patients must be still happening with patients every day.
I worked for PICU physicians in an administrative capacity for years, so I know a little bit of what you're going thru. I often think my work helped me later me when I became ill. Yes, people do not realize what a toll prolonged illness takes on a family. People tend to think 'put it behind you' , but there is no way that can happen. My advice, to what has been helpful for me, is find a good therapist. I try to go every two weeks. I feel I probably will go the rest of my life. My family even got tired of hearing me talk about my ordeal. Physicians often don't understand. Medication didn't help me. It may help others. I had a couple of therapists who I didn't like at all, move on if you get a bad feeling or you don't click. I find it helpful to do charity work. But I also had to walk away from former friends who just didn't understand my ordeal. Our lives are before the ordeal and after ordeal. You have the added sorrow of mourning the passing of friends' childrens. Please try therapy. Keep a journal. I jot down things, just for my eyes. So when I go to therapy, I have points to talk about.
How is your child now?
I would recommend trying to find a therapist. That has helped me the most. But if the first one you see doesn't 'click' don't hesitate to move on. The first one in I saw tried to convert me to her religion. That was a big no for and highly unethical. I could have reported her. But I just moved on instead. I did find a really good one instead. I would look for someone who treats PTSD.
I understand your anger. Five years later, I still have anger that the ICU staff allowed a male stranger in my ICU room while I was in a coma bc he said was a pastor. He was not. They didn't ask my family. He was an intruder. I'm terrified of hospitals now. It was against JCAHO and I filed a complaint against the hospital. JCAHO agreed with me. Worse part I used to work for that very hospital! It was a huge violation. I'll never know what he may have done. So you have every right to feel angry. I tell everyone you gave to be own doctor. And you have beware of hospitals. You are not safe.
My illness was brought on by the flu as well. I had been healthy, then for a few days I was feeling puny until I woke up with a high fever, my husband took me to the doctor who called an ambulance. I remember being in the ambulance, but I lost consciousness in the ambulance and didn't wake up for four weeks. I had H1N1 flu and double pneumonia. I was a non smoker, non drinker, hiker, etc. now I'm fighting for my life. I was first placed in a medically induced coma for a few days, but then I wouldn't wake up. So I stayed in a coma for four weeks altogether. I was intubated, then had a tracheostomy. I had the trache for a few weeks even after i woke up. During the time I was in the coma, the organ donation were called. That's how I'll I was. I also had a pulmonary embolism, blood transfusions, kidney failure and dialysis, paralysis, and on top of that I heard the doctor say they found an ovarian cyst unrelated to my illness. They said they couldn't operate bc I would not survived surgery. About a year later I didn't have surgery and it was benign. I also had to relearn to walk, and relearn to use my hands, relearn swallow. Sunctioning my trache was horrific. They aren't gentle. They don't address you by name in ICU. That really bothers me. I was conscious long before they realized it but they didn't know it. The staf talks about you, but rarely to you. Yes, I had hallucinations, but many things I recognized such a nurse I had previously worked with was my case manager. That was not an hallucination. Even after my discharge, some medical personnel were not kind to me. Some tried to tell me I was not that ill. 55 days in the hospitals – huh? One nurse told me my illness was caused by the devil. I reported her. One doctor called me a liar, I was making up my story. I reported him. So do not hesitate to report anyone who treats you like that. That is unprofessional. My ICU doctor told me PTSD or PICS wasn't a thing and I needed to 'forget about it'. My husband who is a Vietnam combat vet said, he has PTSD and it has taken him 50 years to have peaceful night's sleep. He shut up after that. I'm five years out from my illness, so I have gotten stronger emotionall, but it has been a battle. Of course, you're ill physically and still trying to recover, but the nightmares haunt nightly. They did get better. I write about my experience, I volunteer with Girl Scouts, I sew, I do photography, but I still have a lot of fears. Some I know make no sense, I fear driving, crowds, of course hospital and doctors offices. I fully understand how you are feeling. Some days I cry. Some days I am happy, some days not. Hugs.
I had ARDS, a trache for about six weeks, pulmonary embolism, 4 week coma, kidney failure & dialysis, paralysis, plus other complications. I had to relearn to walk, relearn to use my hands, relearn to swallow. The nightmares are the worse though. I'm five years out now and still going to therapy. I would recommend stay in therapy. I write about my experience and hope to speak to others about it one day. I have good days and bad days. Some medical professional were kind and some were not. There is a Facebook page called Post Intensive Care Syndrome Group you may want to join too. I find the people on there to be very helpful. They have had been kind to me.