May 24, 2012

Personal Health Update

Rather than posting on a special topic today, I wanted to bring you up to speed on a major health issue I'm now facing.  Since it's related to my terminal condition it's important for you to see what can happen and how it effects me.

This past weekend, Dianne and I visited the home of a relative of some dear friends which was located on a beautiful lake.  It was a chance to get out of the house and into the country which I dearly love to do and a chance to see how I handled a two hour car ride.  As the weekend went on, I started to feel kind of off and, in retrospect, there had been signs that something was happening for a couple of days leading up to the weekend.

As we headed home on Sunday, I started to develop a fever, headache and nausea and by the time we reached home I could barely climb into bed.  I was semi-delirious and was having trouble understanding what was going on.  There seemed to be people coming in and out and apparently my face had blown up like a big red balloon, my eyes were slits and I could hardly form words to comminicate.  My fever had escalated to more than 103F and we just couldn't get it to stop or drop so I spent the night in a delirious state, in and out of sleep and feeling like I could die.  Yes, terminal patients have times when they feel like they could die and I think I was very close!

Dianne called the Palliative care team emergency line and was able to speak to a doctor who diagnosed an infection of some sort and prescribed antibiotics and a sub-cutaneous saline dip to re-hydrate me.  Nurses and equipment arrived and turned my bedroom into a hospital room.

My fever finally broke the next morning and, while i'm still feeling weak and very ill, the worst of it was over for the time-being.  Later that day, my doctor came to visit and advised us that I had Sepsis which was a real shock because that is one serious disease.  He said if they couldn't get it under control and I was in pain or had other serious symptoms, they would have called it a day!  Well, we told him we wanted honesty and he certainly was.

I encourage you to look Sepsis up on-line.  It has an average fatality rate of 40% and is  considered so serious that standard treatment is the Intensive Care Unit where they pump you through with IV antibiotics and fluids to try to stop the progression.  It's a blood disease with a high rate of recurrence.  It starts with an infection elsewhere, probably in the urinary tract in my case, and spreads from there throughout your system and can cause damage to all of your major organs.  If it's not caught and treated fast, you can die.  Unfortunately, the signs and symptoms are hard to read so luck plays a large part in diagnosing it IMHO.  My underlying disease - my cancer - and my highly compromised immune system are what makes me susceptible to begin with and means I have to be ultra vigilent to avoid getting any kind of infection from here on in.  Any signs will mean a trip to the ER.  As a side note, I take a drug called Haloperidol for nausea but that drug can mask the signs of infection and Sepsis so it's something to be aware of.

I've learned several new things so far through this experience.  I learned about a very real, very uncomfortable way to die that I wasn't aware of.  If that's the way I'm going to go, I'm not too happy about it, but perhaps they could give me something like morphine to make it easier.  This is the way the cancer gets you indirectly while you're cruising along under palliative care.  I've also learned that I can have times when I think I could die but won't.  They say you often know when you're going to die but circumstances can dictate differently.  I was so sick I could easily see myself saying, "Okay, make this stop!"  Some would, I'm sure.

The biggest lesson in this was that, even though I have a DNR, I would go to the hospital to have this treated, partly because it can (thereby prolonging my life) and partly because I'm just not ready yet.  I hadn't really thought through this completely so I need to do that.  And I had better get an idea of what and when I've done all I need to do to be able to say "Okay".  It's consistent with everything I talk about but maybe you need a crisis like my Sepsis attack to really make it real.

Something to think about.  A lot!

29 comments:

Alex Greene said...

That was close. Glad you're still with us.

katherine schizkoske said...

When the time comes, you will know - and make the decision (consciously or unconsciously) to submit to "whatever" happens. So don't worry about choosing - death will choose you - at the right time.

eKim said...

Glad to see you back, Doug. You have a huge cheering section, including some strangers - like me.

Your writing is so good, so personal, so intimate and frank that seems that I really do know you. You have helped many greatly, including me.

I do worry, however, that it might become too difficult for you.

Please stop writing if it becomes too burdensome, or perhaps Dianne could take over.

- Michael Corrigan

raptordreams said...

Many people do not die of the disease; they die of the complications.

I spent 7 days in the hospital with a fever of 104F for four of them. I was admitted on a Monday, my fever broke after I asked for a tepid bath and was taken to the bathtub area. I had two more rounds of chemo to go, but missed one because of my illness.

My mother recalls how she didn't want my kids to see me - I apparently looked so bad. They were 8 and 12 and there were just the three of us in the household.

What I recall the most about the experience was how easy it would be to die. To simply fall asleep and pass. I fought for my kids.

Remember, Doug, that unless you specify that you want no drugs to manage your pain, your pain will be managed. That's one of the reasons for your Palliative Team - to keep you as comfortable as possible when the time draws closer.

I'm reminded, as I write, of my 56 year-old cousin, a widow, a paraplegic and mother of 2 older boys. She fought breast cancer for several years until it broke through the surface of what was left of her breast. Exasperated and weary from battle, she turned to her sister and said, "If this is dying, let's get this show on the road." The doctors and nurses ceased the aggressive dressing changes, upped the morphine, and within a week she passed peacefully.

Sometimes, the victory is in the surrender.

In the meantime, continue your legacy when you can. Let Dianne write the post script.

Happy trails!

Sarah said...

Doug,
I have been reading your blog for months. I came across your blog through a newspaper article and ever since then, I have been checking your page daily.

I'm only in my 20s, and I haven't experienced any of the things you are going through.

But, I am praying for you.

You are a wonderful writer, and what you are doing with your blog is truly special. You speak eloquently, you speak so intimately about what your body and mind is going through.

Whether young or old, I think every person could learn something from your writing.

I want to thank you for what you are doing and I hope you will be able to keep writing for a long time.

I wish you and your family all of the best.

Lauren Jodi Van Scoy said...

It's so interesting for me as an ICU physician and someone who also writes about end-of-life to read your posts, Doug. Just as you learned about sepsis recently, I am relearning about sepsis-- a disease a guestimate 80% of the patients in our ICU have at some time during their ICU course. Hearing your perspective of this disease, that to me, is second nature, has opened my eyes to the patient perspective.

Your blog also defines nicely one of the problems of shortcomings of advance directives. As you know, sepsis is a potentially reversible disease, and advance directives take effect in a TERMINAL condition. So, what happens when someone, like you, a patient with a terminal disease develops a potentially reversible condition on top of this. This situation is EXACTLY why I developed the Last Wish Compass to help guide people to consider factors other than those addressed in typical advance directives-- things that focus on quality of life and outcomes, to allow patients and families to be prepared for the inevitable 'In the Moment" decisions that will occur.

Be well!!!
-Lauren Van Scoy, author of Last Wish- Stories to Inspire a Peaceful Passing
www.knowyourwishes.com

Jjodie9 said...

I was worried about you, Doug. I knew something was wrong, and I kept checking your site to see if you had posted anything. I am a community nurse, and look after many palliative patients. Your blog had been a huge help and insight to me. Thank you for writing. all the best!

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He said if they couldn't get it under control and I was in pain or had other serious symptoms, they would have called it a day! Well, we told him we wanted honesty and he certainly was. online health store

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