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Wed, Jan 1 2:19pm · Depression and cancer diagnosis in Cancer: Managing Symptoms

Hi Laurie — Two years on from my illness I finally have the all-clear to travel and have done so. It's great medicine!
You're absolutely on-target about getting travel insurance. Besides paying for routine stuff like lost or stolen luggage, it also covers medical costs and medical evacuation should you be some place where medical care is not up to standards.
One thing to know: many travel insurance companies will cover pre-existing conditions — but only if you buy insurance soon after you book your trip. How soon? Depends on the company.
A good Web site to research this is squaremouth.com. It doesn't sell travel insurance. Instead it's a directory of companies that do, and it gives the particulars of various companies and their policies as well as their rates.
As for traveling, taking a cruise is a good option because ships have doctors (the one I was just on had two, as well as three nurses) and everyone speaks English. Also, on a ship you can rest when you need to — while still traveling. It's wonderful!

Jul 18, 2019 · What did you find most surprising once you were out of the ICU? in Intensive Care (ICU)

Dear Colleen and Cindy,
I'm happy to do anything I can to help @cindyvag understand and cope with anxiety. So Cindy, here's for you.
First, please understand that I'm no expert on this. I'm just a fellow ICU survivor who, like you, was badly blindsided by critical illness and its aftermath.
Having previously never been seriously ill, I had no context for the anxiety, fear and other troubling emotions I felt afterward. And that lack of context was itself anxiety-producing. Would I recover? How much? Would the pain ever go away, and how long would that take? I'm sure you can relate.
Now, more than a year out, I've developed a couple of coping analogies. I live on the West Coast and have experienced several very serious earthquakes (including one that injured me slightly many decades ago when I was just 4 years old; I still remember the terror of it). With no warning, the earth suddenly shakes; the rumbling sound is overwhelming. You're thrown seriously off balance. You have no control. And you don't know if more quakes are coming that potentially could kill you.
People who live through multiple quakes come to understand that anxiety is a NORMAL psychological after-shock, a classic "fight or flight" response that nature has programmed into all of us as a survival mechanism.
We PICS survivors are like earthquake survivors — traumatized first physically, then psychologically. Unfortunately it's both normal and terribly unsettling as we worry through every "after-shock" — tiredness, fogginess, physical changes and most certainly anxiety. I think this anxiety is basically our nervous system's "fight or flight" reaction to the tremendous trauma we've been through.
But there's one significant difference between earthquakes and ICU after-shocks. In earthquakes everyone goes through the event together, thus they can relate and support each other.
But it's so different for us. Our traumas are individual, isolated, and afterward we can look OK although we're not…at least not in the first months afterward. That's why an online support group like this is so important. Do please keep checking back in and asking questions of the other "earthquake survivors" — the people who understand what you're going through when others don't.
My other mental image of anxiety is of driving through fog. You know how fog can seem thinner, then get thicker, then thinner again as you drive along? Anxiety is like that, too.
Right now your anxiety is "thick" because you're just out of the hospital, your body is weakened and you don't know what to expect. Going forward you'll probably have days when your anxiety is "thin" and you're inclined to think hooray! It's over!
But this may be followed by other days when you start out good then something triggers you (the sound of an aid car siren will do it for me) and your anxiety gets "thick" again.
And unfortunately some days it's thick from the start and stays thick. So psychological recovery can be baby steps, some forward, some backward, for quite a long time. But eventually "the fog" does lift.
My advice, if you want it (up to you): Be easy on yourself. Take it slow. You're reacting normally to an abnormal event.
Don't expect too much, even when others around you might be expecting you to be "healed by now." As a woman this means delegating to others chores that you'd normally do — and doing so with no guilt. None!
Realize that recovery isn't an event. It's a process.
One last thing. You mentioned that you've developed pimple-like sores on your body. I did, too. Turned out it was a drug reaction to a strong, new medication I needed to take post-ICU. My doctor switched me to a different med, and the problem was solved. But it took that switch to fix things.
I wish you all the best, Cindy. I'm sure there's a whole army of ICU survivors who'd link arms and give you a big, comforting hug if we could. So here's a "virtual hug." Can you feel it?

Jul 7, 2019 · What did you find most surprising once you were out of the ICU? in Intensive Care (ICU)

Dear Cindy, I feel for you having to go back to work so soon. Being hospitalized in the ICU is exhausting and anxiety-producing. Having to go back to work so soon just magnifies that.
Does your company have a human resources department? Would it help to talk to them, especially if the person who ordered you back to work is not in personnel but instead is a direct boss?
Two other thoughts. A note from your doctor saying you need a medical leave might help.
Also helpful: printing out online information about Post ICU Syndrome and giving it to your boss. Most people have never heard of PICS and have no idea what it entails. If you give this to your boss, the boss has no excuse for holding you to the same performance standards as healthy people.
Also, giving the boss (and others at work) printed PICS info could help you build a court case in the future, should it come to that.
I consider PICS at least a temporary disability; it's illegal to discriminate against the disabled.
But I'm not an attorney so make of this info what you will.

Jul 7, 2019 · What did you find most surprising once you were out of the ICU? in Intensive Care (ICU)

Hi Alex — Yes, it's helpful to create your own chronology, and getting your medical records will help a lot. I was in the ICU in January 2018. I had not been sick before being hospitalized, and it was an overwhelming shock to discover later that I'd been critically ill for days — with no memory of it. Then the after-effects were profound. Terrible weakness, confusion, exhaustion, anxiety, depression — and all completely unexpected.
Thus it was some months later before I was mentally strong enough to face seeing the official account of what had happened to me.
My records were free in electronic form — and I'm so glad I got them. That's for several reasons. First, they gave me a timeline beginning with emergency intubation in the ER and ending with discharge. Second, they gave me profound appreciation and respect for the medical professionals who round-the-clock really pulled out all the stops to save my life.
And third, they gave me important information I hadn't received when I was discharged. Neither my doctor nor my discharge papers mentioned I'd had severe sepsis and septic shock — important things to know as sepsis survivors have an increased risk for repeat sepsis. I only learned I'd had near-fatal sepsis (and acute kidney failure and other serious conditions) when I read my medical records. For my own protection I needed to know this.
And also for my own recovery. Like so many survivors I was discharged with scant follow-up. I discovered PICS on my own; I had to craft my own recovery plan because my doctors had no clue about PICS and offered no help for it. My hospital records helped me do that.
(Currently helping me is the book "After the Diagnosis: Transcending Chronic Illness" by Julian Seifter, MD and Betsy Seifter, PhD. It's really good!)
My records also helped straighten out confusing stuff. My poor family and friends had been so traumatized by my near-death that their memories were understandably unreliable to varying degrees. The records helped sort out the confusion of what really happened.
Quite by accident I discovered my hospital kept multiple sets of records. The first ones I got were the abbreviated version. Not a lot of information. Later I learned that I should ask for the complete nurses notes and the doctors notes. I did, and that's where I learned about sepsis. So if you ask for your records, make sure you get the most complete, thorough version. All the medical terms will make it heavy wading, but that's why God created Google, right? Just google the terms and you'll learn a lot.
I have next to no memory of being in the ICU, so I didn't know who took care of me. Thus I had no one to ask for when I screwed up my courage and many months later returned to see where I'd been. I needed to see it for context as I had none. I needed to see it to master the trauma I'd been through. A couple of ICU nurses kindly talked to me and reassured me. Just talking to them and hearing their compassion was so helpful! I'm glad I went back.
Finally, you might ask anyone who visited you in the ICU if they took any pictures. Two of my family members did, but they didn't want to tell me for fear of traumatizing me. I asked to see the shots anyway, and seeing myself intubated and surrounded by so much medical equipment made the situation very, very real. I could see what I went through. And I knew why I had a right to be so very grateful to be alive.
Peace and best wishes for your recovery. It will take a while, but it will come. You will be strong again.

Nov 7, 2018 · What did you find most surprising once you were out of the ICU? in Intensive Care (ICU)

Dear Teresa, Thank you for your kind and encouraging words. Every bit of support helps!
I neglected to add one more positive about journaling. It can take emotional weight off the family. Here's how:
Various family members stayed with me around the clock in the ICU. They experienced my frightening ups and downs — the crazy lab values, the coma that was slow to end, the respiratory failure, etc.
Plus they had to face the frightening reality that I might not survive, and if I did I might be seriously brain damaged.
Of course I knew none this. And once home I was full of questions about what I'd been through. It didn't dawn on me that asking about my hospitalization — and asking the same questions repeatedly because I couldn't remember their answers — continuously re-exposed them to their own ICU trauma. It was an awful thing to do to my loved ones.
Once I figured this out, I asked each person if I could ask them one final time about what I they saw me go through and what they themselves went through. It was pretty wrenching, yet all but one agreed. I wrote everything down in my new journal.
Since then I've made a concerted effort to not bring up our shared ordeal and only discuss it if they want to. Instead I'll reread my journal entries. As I learned more and more about PICS those entries became puzzle pieces I could put together to gain more understanding.
I also use my journal to write down thoughts, feelings, frustrations and observations I don't want to burden my family with. They went through so much for me. I owe them the kindness of letting them put my illness in their past.
As for me, the experience remains with me, in no small part because my docs say I could have a repeat of the core issues that hospitalized me initially.
Bottom line: Journaling is definitely helping me cope, both emotionally and cognitively. Hopefully writing this here will encourage others to journal, and they'll see benefits, too.

Nov 6, 2018 · What did you find most surprising once you were out of the ICU? in Intensive Care (ICU)

I felt that transitioning home from the ICU was like going on a long, anxiety-filled trip without a roadmap. Now, 10 months later, that's probably what surprised me the most. My medical center considers itself state of the art, yet it discharged me with absolutely no printed PICS information so I had no idea what to expect going forward. Surprise! I didn't just bounce back after 2 or 3 weeks, as I assumed I would. There's a lot of work to do afterward both physically and mentally, and my hospital apparently thinks their job ends at discharge. Wrong, in my opinion.
So people in our shoes need to be proactive researching PICS, and finding chat groups like this, if they're to arrive at a thorough understanding of what they're going through and what they may expect going forward.
Another big surprise: my full medical situation. I was discharged with a list of conditions that put me in the ICU on a ventilator (uncontrolled seizures, respiratory failure and aspiration pneumonia, plus more).
But as is common, I could remember nothing of the ICU experience. So being curious about what I'd gone through, I requested my full hospital records, which were free in electronic form.
There I found Surprise #2: my discharge papers were woefully incomplete. Only by reading my hospital records did I discover I'd also suffered sepsis and septic shock, plus a couple of other serious conditions (that one ICU doc predicted would kill me). Getting the full picture helped me celebrate my survival…gratitude is important to healthy healing.
It also helped me understand why I was so weak, forgetful, fearful, confused, exhausted and in pain. And that was still going on months later! So it can be useful to recovery to get hold of your records.
Surprise #3: the length of time it takes to recover and the pitfalls of not understanding that.
I would have done better if I'd had PTSD counseling fairly early on. I didn't because I figured that any day I'd be recovered and wouldn't need it. I did, but I needed a reality check to understand that — something I never got from my doctors.
Surprise #4: how clueless — and frankly unconcerned — doctors are about PICS. Post-discharge I saw 3 different specialists for different issues.
Doc #1 had never heard of PICS.
Doc #2 had heard of PICS and thought patients would be just fine if their ICU discharge doc simply explained PICS to them. My hospital memory was so impaired I can't remember any of the doctors who saw me. There's no way I could possibly remember what they told me.
Doc #3 was all into reassuring me. "You don't have PTSD," she gently told me after I described what I later learned were classic PTSD symptoms. So she was no help.
The bottom line: we really need to understand that we have to help ourselves. Most hospitals, mine included, don't have PICS clinics or support groups (and my entreaty that my hospital consider starting them has fallen on deaf ears). So it's up to us to self-educate and heal our psyches.
I found talking with family and close friends extremely valuable in processing what I went through. I also found writing a journal…something I'd never done before…very, very helpful. Just seeing my feelings on paper made me feel better. Not "cured" but clearer about my conditions and my recovery.

Jun 26, 2018 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

I cannot tell you how happy I am to discover this online support group. It's been 5 months since I was intubated, in a coma, in the ICU. The cause: a series of seizures that were completely unexpected and put me on the brink of multi-organ failure. I very nearly died. Now I've learned that it's true that you enter the ICU as one person and leave as someone different. I know I can never get my old life back…for one thing, repeat seizures could kill me (the preferred outcome) or leave me severely brain damaged (the not preferred outcome) and that could happen at any time despite the heavy medication I now take. I find that terrifying.
Alas no one at my hospital (a large medical center in the Northwest) mentioned post ICU syndrome or told me and my family what I might experience once home. So I naively thought I'd bounce back in a couple of weeks. I had no idea how long-lasting my physical weakness would be, nor how exhausted I'd be, nor how much continuing pain I'd experience from a broken back caused by my seizures and undiagnosed for two weeks. Then there's the mental aspect — the brain fog, forgetfulness, confusion. I've self-diagnosed myself with a brain injury. How significant or long-lasting it is I don't know.
However I do feel like I'm improving thanks to time and the Internet. There are no Post ICU support groups where I live and no therapists I can use (under my health plan) who have experience counseling PICU survivors. So I'm working to piece together my own recovery by finding information and help online. It's been a hit or miss process.