Very often, the first warning is the last one...

Wednesday, December 8, 2010, 8:30 pm

So when you’re the patient, your time is not your own, you find it more difficult to advocate for yourself (you feel whiny, needy, etc…), and rather than being the visitor or the supportive family member, you’re actually the person who is sick.  And being sick means that you don’t feel like doing much of anything. I’ve been in the hospital now for one hundred twenty hours.  That’s five days now... to the hour.  The first twelve hours were spent in the ER and the rest of my time has been here in the ICU.  It has nearly killed me to not write.  Oh, the hours I’ve spent lying here in my bed, composing in my mind.  But as much as I was dying to get my thoughts written down, I just didn’t have the energy needed for the effort necessary to put my prolific fingers into action.  I would have had to reach over and pull my laptop out of my backpack. That was perhaps my biggest obstacle!  It’s amazing how much we rely on the oxygen level in our blood to be hovering around 98 – 100%.  But when that level plummets down to the upper 80’s/lower 90’s, everything becomes a chore.  So I allowed myself to do just what the doctor ordered… stay in bed and rest.

For the first 24 hours in the ICU, I was on complete bed rest, but after that period of time, I was allowed to walk 5 feet to use the restroom.  Just getting there was quite an ordeal with all the wires that are hooked up to my body and then attached to a monitor on the wall.  They are constantly measuring my Heart Rate (HR), Respiratory Rate (RR), Blood Pressure (BP) and Oxygen Saturation Level (SAT), numbers on a monitor… While lying in bed, my heart rate would settle in as low as 68, my respiratory rate would be about 15 and my oxygen level was around 97%, but during the 4 minutes it would take to walk that 5 feet to the restroom and back, those numbers typically moved to an HR as high as 133, an RR of 35 and SATS of 87%.  I would climb back in bed and lay there, huffing and puffing, my heart beating so fast I thought it was going to jump right out of my chest.  My body’s response to that insignificant level of exertion was the biggest indicator of the fact that it had not yet begun breaking down the 3 massive (yes, that’s now what they’re calling them) blood clots in my pulmonary artery.  The clot they’ve been most concerned with is one they call a saddle clot.  It is lying in the center of the pulmonary artery where it branches off into each lung.  If another small clot was thrown and landed there, it could have caused a full obstruction. 

As soon as the blood clots were detected on Friday night during a CT Scan, they began giving me injections of Lovenox, which is an anticoagulant (blood thinner) that prevents the formation of new clots.  The assumption that there were more clots in one of my legs was confirmed when an ultrasound showed several behind my left knee.  After several days, the Lovenox forms a web-like coating around any blood clots in the veins of the body.  This web attaches itself to the wall of the vein, prohibiting movement of the clot.  The body then either breaks down and dissolves the clot naturally or re-routs the blood to another vein close by, but the risk of the clot breaking free and being thrown disappears.  Now the clots in the pulmonary artery are not subject to the same effect from Lovenox as clots in veins because the blood in this artery is oxygenated, therefore, immune to the ‘web-effect’.  These clots will just dissolve over time. 

They began giving me Coumadin, which is another anticoagulant by mouth on Saturday night.  It will be several weeks before I am what they call “therapeutic” on it, meaning that the level of Coumadin in my body is appropriately preventing the formation of blood clots while at the same time, not thinning my blood so much that it won’t clot when necessary.  My doctor has put me on Coumadin for the rest of my life.  I have been given an INR (international normalized ratio) that was arrived at based on a blood test that showed how quickly blood clots in my body.  The challenge is to keep that INR level consistent.  Too little and I run the risk of forming blood clots, too much and I could bleed to death.  The thing that makes it complicated is that there are many factors that can affect INR, such as foods, alcohol, other medications, illnesses, or changes in activity and travel.  Foods rich in vitamin K pose a particular risk because vitamin K acts the opposite of Coumadin in that it helps blood to clot.  It’s not that I can’t eat them.  I just need to be consistent in the amount I consume on a daily basis.  Some examples of these foods are leafy green vegetables; anything green such as lettuces, spinach, broccoli, asparagus, etc… Cranberry products increase the effects of Coumadin and can lead to bleeding problems. 

I do believe that’s enough medical speak for now. My brain is exhausted, much like the way it felt back in April when Christopher was hospitalized and we had a crash course in Severe Traumatic Brain Injuries and the intricate workings of that amazing organ.  As I told a friend of mine this week, any confusion I experience in keeping my facts straight I can now chalk up to oxygen deprivation, and I will continue to use that excuse to my full advantage in the future!  I think I’m done learning about the complex workings of the human body, for this year at least. 

There’s more to tell but I’m blitzed.  I am being moved to another unit tonight where I will continue to be monitored around the clock, but I am now out of the severe danger zone.  I walked around the ICU yesterday and again this afternoon (on oxygen) for about 5 minutes, which is something I could never have done without stopping to catch my breath several times only a few days ago.  I am so thankful for the steady improvement I have experienced, and I must say that the nurses and doctors here at Kaiser’s ICU have been absolutely wonderful!  From the fun and laughter shared with Shelagh to the unbelievable kindness and care, including some great conversations with Gerald, I have truly been pampered.  My inspiration came in the form of Wendy, a nurse who was assigned to me on Monday morning (and who was my nurse for 3 additional shifts during my stay).  It turns out that she had almost the exact same experience as me several months ago with massive blood clots in her pulmonary artery, including a saddle clot.  Wendy provided a plethora of information and spent a lot of time educating me.  She is now back at work full time and well on her way to a full recovery.  Every time she walked into the room I thought to myself, ‘that’s going to be me… just be patient.” 

I can’t bring this to a close without saying several things.  First of all, thank you for all of your e-mails, facebook posts and text messages.  They encourage me, lift my spirits and mean more than you will ever know.  I haven’t responded to a single e-mail and it is killing me to not be able to write to each and every one of you like I did when Christopher was in the hospital.  But I’m trying to be gentle with myself, understanding that the circumstances are different this time.  Thank you to those of you who have expressed an interest in coming to see me, but I am going to continue to limit visitors to my family, as having them is very taxing.  Finally, I want to thank all who have stopped by the house, bringing meals, plants and so much more.  It is such a comfort to me knowing that my family is being cared for so lovingly. 

I can’t believe that I have once again found myself in a position of relying on family and friends for so much, but some things are not for us to understand.  I thank God every day that He chose to spare my life last week, as I have been reminded multiple times that with pulmonary embolisms, “very often, the first warning is the last one…”  I’m not really sure what it is that I am meant to learn this year, but one thing I do know is that my time is not up.  While I don’t know what the future holds, I will be open to whatever God brings my way and I look forward with great anticipation to writing all about it!  I love you all…