Life is good with happy gorillas, not so much with evil clowns under your bed.

Saturday, March 31, 2012

It has been a long time since I have had a bad kidney day. Usually it is the burning ache in my joints. But today is one. On the transplant side no less, so I wonder if the stone in there is trying to pass. Normally the pain in my joints burns constantly. You just can't get away from it. You can dull it with meds, but it never goes away. You learn to live with it. You know just how much movement you can do before you will pay for it the next day. In a strange way, you welcome it, like an old friend. You know that you are indeed still alive and kicking, because you feel your joints before you are fully awake. If you roll the wrong way, or stay in one position too long, you wake up with the pain. Hey, I didn't die in my sleep, win!

The kidney pain is different today. I just could not sit and work, plus Ian woke up at 6am, and didn't stop going, so I was up. I napped at 10, and decided to join the living. I started to look for the owner's manual for our TV, as George found a wall mount for it. Never did find it, But what I did do was clear out 75% of the office, clean it, walls and floors, and rearrange it neatly. So much more room now!! I feel better. I still have a pile of crap along one wall, 5 years o Katie's school stuff, 3 years of Linus' and 3 years of Early Intervention for Ian. In other words, a paperwork snowstorm. oh well. I feel that I actually did something, in spite of being in wicked pain. The strange thing about me, and perhaps this is true for other people as well, but when I do take my narcotic pain medication, I get a huge burst of energy when it kicks in. I suspect this has a lot to do with the clean office today.

The sad thing is that I did all this, and am feeling worse than I did before I started, because my friend RA decided that it didn't want to be left out. I ache everywhere. I really do think it is the stone in that kidney trying to move, because I break down in tears when I whizz, the pain is that intense, but thankfully short-lived. So I have to miss my neighbor's Pampered Chef party. I'm so glad that I married a guy who happens to totally dig gadgets, and really likes Tortured Chef gadgets. So I'm sending him over after the party with a list and a blank check.

Spring Break has begun. My big ones are out of school for a week and my baby starts his very first day of pre-school on Monday. I am excited, but I bet his big sister will be bawling her eyes out. She dotes on him so, clucks over him like a mother hen. I am very lucky that my kids get along for the most part, I hope it stays that way. Even on a very bad day, I'm still blessed. This isn't how I had hoped my life would be, but if I the opportunity to trade any of it to be free of this pain, I wouldn't change a thing.

Sunday, March 11, 2012

Back from the Brink

On the Enbrel packaging, website and commercials:

ENBREL can lower the ability of your immune system to fight infections. Some people have serious infections while taking ENBREL. These infections include tuberculosis (TB), and infections caused by viruses, fungi or bacteria that spread throughout their body. Some people have died from these infections.

They aren't kidding.

One minute I was driving to McDonalds after picking up a prescription. The next I'm at home calling my husband to come home, I was ill. It hit me in a matter of minutes. I was so weak I could barely make it up the stairs, and I have very few memories of that day, Thursday, March 1, 2012. I remember waking up around 4am, having slept for 16 hours. I took some meds, drank some ice water and crawled back into bed. I woke up the next morning, feeling a bit better, slid downstairs to see my husband taking care of everyone, getting them fed and off to school. It was as if I was watching the whole scene over my shoulder.

The sitter arrived and we left for my rheumatologist appointment that had been scheduled several days before, to address the flare that would not stop in my jaw and c-spine. By the time we got across town, I was fairly short of breath, every deep breath hurt across my chest, so I found myself breathing rather shallow.

Saw the PA, she ordered a neck xray, not seeing anything but that I was holding my neck very straight, and she prescribed me flexaril to relax the muscles. My temp was 103.9 and my blood pressure was low, she suggested we go to my primary care doctor. G called and got me in 45 minutes later. We drove back across town.

I skittered inside, by this time I felt like roadkill clinging to the truck tire of life. The nurse took my blood pressure twice, as if she didn't believe the results, 90/40. My heart rate was 150. The doctor came in with a pulse oximeter and verified my heart rate was bouncing between 150 and 160 and my oxygen saturation on room air was the low 90s. "She needs to go to the hospital, now" He offered to call a squad, or we could just go in and he would call ahead so they knew to check me out. We chose to drive the 3 blocks. My doctor would not let me walk out, he personally put me in a wheelchair and wheeled me out to the car.

The ER had about a 4 hour wait, but anything heart related will get you an immediate EKG. If there is nothing then you go out to wait. This time they did the EKG and suddenly I'm being raced to a room. Overhead I hear "Cardiac team to ER 44 STAT" as I'm being wheeled into room 44. Oxygen was placed on me and nurses worked furiously to get an IV in me. My automated blood pressure cuff went off, I heard someone say 70 over 30 and then a nurse placed two big rectangular patches across my chest, she murmured something and I heard "just in case". I later found out that those patches are used when someone goes into cardiac arrest and they have to shock you, it is where they place the paddles.

A doctor told me that they thought there was an infection in the lining around my heart. There were so many people in the room, the ER attending physician had this panicked look on his face. G said there were three times as many people outside the room as there were inside. Eventually someone found a vein and they started massive fluid infusions, trying to get my blood pressure up. During this time, I kept drifting in and out of conciousness. When I would close my eyes, someone would poke me really hard to get a response from me. I remember them wheeling me to the ICU by that time I was so weak I could not even lift my arms without great effort.

The doctor placed a central line in my neck, I had no concious sedation, but I don't remember that, except for when he stitched it in. At some point he also placed a line in my femoral artery. I have no memory of this, and didn't even know I had it until that evening.

They ruled out cardiac issues that night, and confirmed I had sepsis and had gone into septic shock. Basically, with all my kids having strep throat, I probably got strep from them. Instead of getting a sore throat and feeling crappy for a few days, the bacteria set up shop and colonized in my sinuses for a period of time, then spread to my bloodstream. By the time I got to the ER, my organs were beginning to shut down. This is a Bad Thing.

I did bounce back quickly and was home by Monday afternoon. However, here we are 3 weeks later and I'm still not totally 100%. I tire easily and can't barely pick up Ian, have nearly dropped him a few times. To be fair, though, the kid is a solid mass of squirming toddler, not very many people can pick him up easily.

I can't imagine how life will change for my family if I were gone. I'm very fortunate that I got to the ER when I did, or things would have been much, much different.