Saturday, October 4, 2008

Once a Patient, Always a Patient

With all of the good fortune and running around I do, I must admit, these transplanted lungs let me forget from time to time that I was once a "sick girl." Now I'm more often the "speaks" than the "sick" in my blog title. That is good. That is wonderful. I don't know why I get to be so lucky to have moments, maybe days?, where I feel like a healthy person.

Having said that, there are times when being a "sick girl" floods back to me. Sometimes it comes in the form of an overwhelming memory. A smell, a story or being inside a hospital can transport me back to my sicker days in an instant.

And then there are the moments of worry--that internal evaluation and diagnosis that never seems to completely turn off for us frequent fliers. Often, this worry can be scary; "Do I have Chronic again?" "Am I getting sick, is it pneumonia?" "Is that pain in my back from my kidneys--are they finally giving out under the weight of these medications?" These are not uncommon thoughts to be running through my mind and certainly they are unsettling.

Sometimes, however, even I have to laugh at my internal evaluation and diagnosis.

I was driving down the highway the other day and I felt a cold sensation in my left hand. At that time, I weaning off of my blood pressure medicine and my thoughts immediately went to the connection between my left hand and my heart. I took my hand off of the steering wheel and the sensation went away so I decided the symptoms were positional. For the next few minutes, I experimented with my hand in various positions; above my head, on my lap, out the window etc. The only position that produced this symptom was on the steering wheel.

As I contemplated the symptoms of a heart attack and wondered if a positional cold sensation was a lesser known beginning stage to cardiac arrest, I looked at my dashboard. This was a hot day, the first in a week, and the air conditioning unit's fan was blowing directly onto my left hand. The "positional cold sensation" was the air conditioning--an external sensation, not internal!

I laughed all the way home. What a dummy, right? No. Not really. When you have been down the illness road, you never let go of the internal evaluation. When you want to be a proactive patient, you look for warning sides. When you love life, you want to protect it. And sometimes, during your investigations, you make the kind of error you are happy to make when the air conditioning fan is blowing on your left hand.

Being a patient is strange sometimes!

Do you have any stories of illness investigations like this one? Do you have other stories in which it turned out to be something and you caught it by being aware? I would love to share stories like these with professionals and students to help them understand the internal evaluation process that becomes second nature to those of us with illness.

Please share your stories with me and I will share them with those who need to understand what life is like when one is Once a Patient, Always a Patient.


Em said...

I am very happy I found your blog. Thank you for everything you're doing to help us full-time patients. I can completely relate with this post. I'm finally getting my life back, but I tend to 'freak out' whenever my pain increases. It has taken me a very long time to learn what treatments I need to keep my pain levels down. Now I have more control over the pain, but I still have anxiety every time it increases. I've been diagnosed with post traumatic stress disorder. If a thought, situation, or feeling relates to my pain it will trigger a sort of chain reaction of fear that the pain will come back and I will not be able to control it. For example, I haven't slept well tonight and I'm freaking out thinking I'm going back to my old life of constant high levels of pain, when really this isn't long term, just a temporary setback. I think time will heal the trauma, but for now I'll patiently wade thru the anxiety.

Katey said...

Hi...I really like this post. I'm a very proactive, CF/transplant patient as well. And when I notice something different or wrong, my mind races with thoughts of what could be wrong. Sometimes, it's nothing (and i feel like an idiot for getting it checked out), or sometimes it's something serious. I once had really bad nausea, and I was about 9 months out of transplant. My coordinator had me come for lab work and PFTs and chest xray, then sent me to our "outpatient" room on our transplant hospital unit for evaluation. The doctors decided to keep me over the weekend to give me fluids. Then on Monday, the next thing I knew, I was breathing extremely hard, my oxygen sats were dropping, and they decided to put me on the ventilator. I was on the ventilator for 11 days, and in the hospital for another 10 after that. And it all started because of nausea. If I hadn't reported it, or if my coordinator hadn't made me come to get checked out, there is no telling what would have happened.