Thursday, December 4, 2014

#147 - Addison's Crisis Scare

This Thanksgiving I was making the trip into Houston by myself since my husband was having to work. The excitement over the pending trip to my Uncle and Aunt's new home in a beautiful part of Houston was thrilling because it was also their home-warming party.

The trip takes over one hour, one way, mostly down Highway 59. It's actually a pleasant trip.

However, the past few months have been very challenging due to massive amounts of blood in my urine and lots of testing to figure out what is causing the bleeding. Since my father had bladder cancer, frankly, I was scared of it being cancer. I think this fear or thought in the back of the mind is natural for any child of a parent who has battled cancer or died from cancer that is found to be "genetic."

So, I have gone through testing during the past few weeks that range from ultrasounds, bloodwork, a CTscan with and without contrast, along with the procedure of bladder scoping.

A diagnosis I got about a year ago, and that I had hoped would somehow find "healing," was that my uterus has become so incredibly enlarged that it is literally "smothering" my bladder and grating against it, injuring it. Additionally, it is causing pressure against my lower spine, which is one of the most painful elements to this problem. Then, on some days, I suddenly have serious vaginal bleeding with huge clots that are very painful to pass because the uterus is not doing well; this is not a "normal" menstrual cycle, but further sign of things going wrong.

I have been on Depo-Provera injection for quite some time, which has kept the cycles away and that is good because I am in extreme agony with enough blood loss to create anemia during a "normal" cycle. Endometriosis has also been a life-long condition that causes tremendous suffering and has aggravated this situation.

Needless to say, between the bladder reacting as if sandpaper is rubbing against it, the ureters being stretched and contorted outward as if they are rubber bands pulled to their limits and the other internal pressure creating abnormal consequences, I am in considerable pain, especially after I am on my feet too much or moving around too much.

In spite of the pain, I still traveled a few weeks ago to be with my youngest daughter, Stefanie, as she was inducted into an Honor Society for her Master's Degree that she's almost completed. Even after that trip, my situation went further downhill and my urine became full of blood, all day, every day.

So, in an attempt to get in control of the pain, lately, I have been "resting" as much as possible, and this is also what the surgeon ordered because a horrible nightmare can occur to make this bad situation worse. My doctor said my bladder is actually in danger of prolapsing through the vagina from the intense pressure of the uterus bearing down upon it.


Well, I am 46 years old and don't relish the prospect of "Hey, my bladder is coming out of my vagina" kind of moment. So, the Urologist sent me directly to a highly recommended OB/GYN who confirmed that my uterus is now equal to the size of a four month pregnancy with it being full of tumors, a minimum of three tumors, believed to be fibroid. The tumors are very on the left side of my uterus is so large that it can be felt simply by pressing upon my abdomen. My entire uterus can be felt with bare hands as it explores the abdominal swelling. As I lie down, you can see the swollen uterus and the lopsided swelling on the left...but this is not like the days when I was pregnant with my babies...this is mentally and emotionally disturbing as well as physically painful.

For those who don't know about this stuff, a woman can often have their uterus removed during surgery, through the vagina, to cause less bodily damage. However, I was told that the uterus is so large that this kind of surgery is no longer possible.

That is pretty serious for me because I already went through a supposed simplistic gallbladder removal in 2009 that led to massive 10th rib needed to then be removed to surgically access a large mass of scar tissue that was the size of a softball due to the gallbladder removal. Then, we soon realized that the abdominal wall did not stay surgically closed from the rib removal, so a third surgery was needed to keep my guts inside my abdominal cavity.

St. Luke's Episcopal Hospital in Houston performed a 10x16 spine-tissue transplant because the abdominal wall was not healing/closing after the rib removal incision and mass removal that left a quite large incision stapled shut, and it didn't work. Surgeons suspected steroid treatment for Addison's as the source that was hindering my surgical healing process.

But, what happens when an Addison's patient needs surgery? They need MORE steroids for stress dosing, for survival. It's a vicious cycle. These three surgeries were within about three months of each other and every subsequent surgery required that the surgeons go BACK through the SAME surgical opening, each time making it larger, more painful, and even more traumatic.

I have had several major surgeries and am so grateful to have SURVIVED each one of them, but the Addison's makes things much more dangerous. That is the harsh truth is that our Addison's condition increases the chance of complications.

After all the surgeries I have needed and that have served to keep me alive, I have found the surgery itself is not so scary, but the COMPLICATIONS can be terrifying. It is especially critical to have a surgeon who provides responsible, excellent post-operative care to make sure their surgical effort are a true success.

Now...all the backstory is to lead back up to Thanksgiving Day.

Since I have been facing major issues with pain, infection, and inflammation, I have been forced to do more stress-dosing over the past few months. My blood pressure has been extremely erratic. One day it will soar and the next day it will bottom out. Keeping it stable has been a Fairy Tale for quite a long while because of the stress, swelling and infection the enlarged uterus has caused.

So, on the Thanksgiving morning, I kissed my husband goodbye as he left for work, then I checked my blood pressure again, it was on the high end, about 140/98, so I continued to get ready for my Thanksgiving day with family in Houston...about 90 miles from our home. Packing my three pies with whipped topping, I also decided to bring along my wrist-blood-pressure cuff to monitor my blood pressure for the day, so I could take any needed medicine to keep things under control. I wasn't feeling just "right," but that has been going on for quite some time; not feeling "right" is my normal for the time being, so I just kept going on auto-pilot and soon got in the organized car to leave our home in the forest for downtown Houston.

Within ten minutes of being on the road, I began to feel severe dips in my blood pressure. I put the cuff on my wrist and began checking my blood pressure and was shocked to see it sink from 140/98 to 86/52 in less than five minutes time. I had ALREADY taken a stress dose, but I pulled out my medicine container that I always keep with me and began my routine of taking 20-30 mg of Hydrocortisone, but this time, I decided to take 50 mg because the dip had been so rapid and severe. Then, my experience became one of the scariest that I have had since being diagnosed with Addison's in 2001...I developed extreme brain-fog in the few minutes this all happened, while driving down Highway 59 toward Houston.

The rest of the events are shrouded in a thick mental fog that comes with a person's blood pressure sinking so low that oxygen to the brain is seriously reduced.

I either called or texted my husband with the message of, "Call me" as I was searching for a place to pull over to the right. Obsessively, I kept thinking, "Pull over to the right...stay right." I knew I needed to immediately let him know I was in trouble, even though Sgt. Dave was over an hour away, at work already. Turning around wasn't an option...I didn't have the thinking-power to even move out of the right lane. My husband called, I had him on speaker phone and tried to tell him that I was in trouble and trying to pull off the road, to the right.

Since I was on the highway through a rural area, I was terrified at being stuck somewhere "off the map" as I physically plummeted. My husband's voice was panicked, yet stern as he ordered me to, "Turn around! You are having a crisis and are slurring!"

All I could think was, "I can't even FIGURE OUT HOW to turn around...I will stay on this edge, and go slow until I can PULL OVER AND STOP in a SAFE SPOT."

With the little bit of brain power I had left, I felt the panic mounting inside of me. There was nowhere to pull off the road safely. Somehow, I KNEW to NOT STOP in the break-down lane; I wasn't even sure I would stay in the car or not stumble as things deteriorated as I lacked coherent ability to make decisions that were need to prevent me from being ran over by a big rig.

Of course, I continued to hit the button on my blood pressure cuff, which while on the phone with Sgt. Dave gave the next reading of 77/42, and I realized the search to find a safe zone in the middle of NOTHING was urgent. All of this happened within about a five minute time-frame, but it felt like an ETERNITY. I kept swallowing more HC pills as stress dosing and knew I was past the point of being able to self-inject, I was too weak and too far from being mentally aware enough to prepare and give an injection.

I then recall my car hitting the hard ridges that are built into road and realized I had been losing consciousness, and that's when I spotted a big sign in the sky that said, "Love's Truck Stop." The hard ridges jerked me out of my lack of consciousness...yes, the ridges work, and I felt as so relieved that a safe place was within sight! However, still on Highway 59, I prepared to turn right, off the highway as I waged a battle to keep looking in my mirrors to make sure no one was driving any where around me. I HAD to get off the road; I could NOT hurt anyone because of the sudden onset of an Addison's crisis. If I did cause someone to be hurt as I became sicker, I would not be able to live with myself.

How could this happen? How come there weren't more warning signs that could have prevented such an extremely rapid deterioration in my vitals? How come this had to happen while driving down a isolated stretch of Highway 59 as I was alone?

At this point, I was FIGHTING to stay conscious and had literally gobbled a HAND-FULL of steroids, which by the end of the day would total over 200 mg of Hydrocortisone, the most I have ever had to take in one day, and still, my blood pressure kept sinking.

With a bobbling head and eyes that were trying to refuse to stay open and taking great effort to see, I managed to pull into the truck stop parking lot. I pulled against the nearest curb, turned off the car (I think) as the phone lay on the console with the speaker phone still relaying the voice of my husband. I finally spoke, trying to tell him with a thick, uncontrollable tongue, that I was parked at Love's truck stop and was going to lie my head back and just rest a while.

I was wise enough to know I needed to obey my body.

Sgt. Dave was furious, but I did not have the ability to be concerned about his own panic as he hung up on me for being so angry that I wasn't doing what he wanted me to do. Frankly, his tantrum was not my concern, I had bigger things to worry about. With him off the phone, I had one less problem and could focus on myself...trying to figure this out.

The last thing I remember at that time was reaching to hit my door locks, not realizing the doors were already locked, I looked up to see the huge "Love's Truck Stop" sign directly over my front windshield and I actually giggled weakly while praying, "God, please don't let this be my last sight."

And I literally fell unconscious.

The shocking part to this was that once I regained consciousness, over 45 minutes had passed. I could not believe it. I don't even remember really if the car was turned off or still running. Being able to park was good enough for me.

I took my blood pressure and it was now 90/58. Better. But, best of all, I WOKE UP. I was ALIVE!

Taking MORE Hydrocortisone, I decided that my body must have been processing all the pills I had swallowed as I lie there unconscious, and they were finally working their way through my system. I considered going back home, but as my blood pressure continued to rise, I knew that I would return home to simply find myself with decent blood pressure as the worst had passed, and my determination to move forward was full of stubbornness.

My blood pressure went to about 110/78 and it held for about twenty minutes, so I decided to go on with my life. I also knew that after all the massive doses of Hydrocortisone had been taken, that I might have some high blood pressure, but that never happened.

Of course, everyone began eating Thanksgiving dinner because my little truck stop detour and my slowed pace added nearly two hours to my travel time. That was depressing to me because things went so wrong, then I began to realize that things actually went right...God helped me to be safe, for others to be safe, and for me to make it to a place that was not too scary to sit in my car alone while extremely vulnerable. I never expected to lose consciousness.

The drive within me to get to the Thanksgiving gathering was powerful. I was going to see both of my daughters, my son-in-law, and my grand-daughter among all the other family members I love so dearly.

My Uncle Billy, daughter Heather and grand-daughter, Coraline.
My sister is in the background looking like a super model!

Then, I was getting to see my Aunt and Uncle and their lovely new home, and my cousins I hadn't seen in well over ten years.

My beautiful sister, Robin, and my cousin, David.
When we are together, I still feel as if we are kids!

The first few miles back on the road were "test" miles, to make sure I was fully alert and capable of driving safely. I felt a life-time better, but I knew things were not right in my body, and I suspected the wild fluctuations to be directly related to my condition causing too much stress upon my body.

Stefie is giving me a sweet smile and my niece Shaye is
growing up too fast!

Also, I contemplated the reasoning for my meds taken in large doses for not kicking in as fast to get my blood pressure to an acceptable "low" range was explored. Obviously, my body was not absorbing the meds as it should have. That concerned me. One way to approach this problem, I believe, is to make sure I do not find myself without a ready-snack to take with the medications to help absorption. Usually, I have peanut butter crackers with me, but this time, I was out of luck and even though I was SO CLOSE to the truck stop shop, I was far too weak to try going inside. From now on, I will at least make myself a snack pack of Ritz Crackers with peanut butter before I get on the road.

I felt weak for the rest of the day, but everything was okay, other than my pride being wounded.

Determined to keep going, I had a wonderful time with my family, especially with my uncle who was justly proud to show off his AMAZING shop where he does woodworking projects above and beyond the norm.

I had so much fun. The two of us spent about an hour in his shop as I got the grand tour.

Since I took Shop in school, I really loved this experience.

My uncle is such an amazing man; it is wonderful to see him living a life of excellence and luxury.

My Uncle Billy's CNC machine - remarkable!

The downstairs part of his woodshop - tool zone.

He's also a perfectionist, which is evident as you see his two-story shop setup.

So, I got to spend my Thanksgiving going from being unconscious at a truck-stop to a family home that is worth well over a million dollars. Then I was blessed to get home safe after the festivities. It was quite a memorable day.

The day after Thanksgiving, the reality of the previous day hit me hard. I realized that my condition is more precarious than I had wanted to admit. Yes, I know it isn't good because of the level of pain and bleeding from a couple of places in my body that this causes, but I am accustomed to moving past the pains in life as much as possible or be controlled by it.

Still, I acknowledged that my health, especially the Addison's, is not stable. At least, not for now, especially due to the excessive pain my body is processing. After I have the surgery and get the uterus removed, I believe things will become more manageable. Until then, I am going to try to avoid lengthy car trips. But, I savor the time I had with family, especially with my Aunt Sheila.

Aunt Sheila...a woman who is easy to love and who loves her
family so easily.

On December 4th, I will have a final test conducted to determine a couple of other things for the surgeon to develop a surgical strategy. On that same day, we meet with the surgeon to discuss the details and to learn my surgery date; she already told me that it would go fast after the Thanksgiving holidays.

I am thankful that God put me under a sign of "Love" during one of the most difficult and scary times of my life with Addison's. I just never thought the love would be associated with a truck-stop in Texas. I will never see that truck-stop in the same way has earned a special place in my heart.