So I think the way I'm going to do this is to post an old entry and a new one each time (that is, until I run out of old ones). I think it will be interesting to see the comparison. So here you go. The first entries of starting this experience two years ago and restarting it now.
NOVEMBER 7, 2011 - ONE MONTH POST OP
This weekend I had to go back into the hospital and have my nephrostomy tube put back in after I accidentally pulled it out on Wednesday night. The first several minutes of the procedure were actually kind of fun since I was able to observe most of what the interventional radiology doctors and technologists were doing. But around twenty minutes in, something happened that made my diaphragm and stomach hurt like crazy. It felt on fire and I was having terrible trouble breathing. I was given more Versed and fell asleep after that. Luckily I don’t remember the rest. I stayed overnight and came home yesterday. Today I am still VERY sore, but I am managing. Wesla came over to ask questions about the procedure and about the condition in general because she’s using me as her study in nursing school. It was fun talking to her, she always livens up a day.
I’ve been fighting feeling down, especially in the evenings when I lay in bed without family constantly around me. It’s hard to ignore what you’re going through when there’s no one to distract you. But I will lay in bed and pray tonight. I’m mostly too tired to care about pain right now, but God is always worthy of praise no matter how tired I am. This week’s scripture has been Romans 8.
Bless the name of the Lord.
JANUARY 15, 2014 - TWO YEARS POST OP... ___ DAYS PRE OP?
It has been roughly two years since my last surgery and the little kidney is at it again. I’ve been in nonstop pain for several months. The emergency room CT and follow up MRI showed only a residual “cyst” left over from my previous surgery. It is small and doesn’t look like it’s grown at all since two years ago. So I had a HIDA scan to look at the output of my gallbladder which was mildly abnormal. However, the pain I’ve had the last several months is so similar to the pain I had before surgery the first time, so I was also ordered a renal scan of the same type. It looks at functionality of the kidney, not just construction. It was the worst thing I’ve experienced since those old days in the hospital. I make a point out of not crying out of pain in front of people, but I just couldn’t help it. It hurt so badly. I had to lay on a table much like the one we use in the cath lab, but with much less padding. Ten minutes after they give me a radioactive tracer, I was given a bolus of Lasix. For the next hour, pictures were taken to trace the fluid through my kidneys and bladder. I’ve never had to pee so badly in my life! And the pain was unbelievable. I kept counting up as high as I could by 3’s and then down in 2’s just to get my mind off of it. Finally, after an hour, they let me off the table and I rushed to the bathroom. I sat in there and cried. Part of me couldn’t understand why. What was wrong with me? I needed to get a hold of myself. But the other parts of me instantly answered. I had forgotten what it was like to be tortured for a diagnosis. The staff, the doctors, they all mean well and are very good at what they do. But to my body, it was torture and the sudden flood of inflicted pain was demanding of a response. My eyes were red and swollen when I made it back into the room. Mom started crying when she saw me and the nuclear medicine technician tried to cheer me up by talking about my life outside of my condition. She didn’t mention that I had cried, not once. I liked her. I scheduled gallbladder surgery hinging on the results of my renal scan. The waiting is what’s the worst. Actually no, the questions while I’m waiting are the worst. Everyone asks the same questions over and over and I have to relive the things I don’t want to think about over and over. I know everyone is concerned and I am extremely blessed to have people in my life who care about me. But it gets difficult when the first thing people ask is how my body is doing and not how I’m doing. I’m more than a misbehaving kidney, you know. I have dreams and a destiny. I have things I’m meant to do and this isn’t the end of them.
But two days ago I finally got the results. My renal output on the right side showed the tracer getting caught up in the old area of the diverticulum. Dr. Bird isn’t sure if it’s just hanging up around old scar tissue or if it’s getting caught in the residual “cyst”. So today he is having a conference with the Shands interventional radiology team to discuss how they will be working on me. They will plan to draw fluids from the “cyst” to see it it’s filled with serous fluid or urine. Then they will inject dye into it to see if it’s a simple cyst or a diverticulum that’s connected to the rest of my urinary system. If it’s a cyst, then the team should be able to ablate it right then and there. If it’s a diverticulum again, then Dr. Bird says he’s have to take out that entire lobe of the kidney or else it will keep forming them. He said the surgery will be more extensive than the last time. It is risky too. Taking out a lobe has to be done very carefully. If the vascularization of the kidney is compromised, the entire thing will be lost.
I have two fears, one of which is inevitable. The first is that it is only a cyst and that ablating it doesn’t help my pain or that it will but I have to get it drained every time it fills. At least that will be only every few years. The second is that it IS a diverticulum and I have to go through the nightmare of two years ago all over again. But I do see a bright side. If the latter, more terrible sounding idea is what happens, I will have SO much time to rest. God has blessed me with my job at NFRMC and it has been wonderfully educational. Also with the money I’ve made, I’ve been able to buy a car and save up enough to pay rent on a house for quite some time (or pay medical bills, as the case may be). But the stress of the cath lab is evident in everyone who works there. It will be nice to have a rest, a real rest. And quite possibly, by the time I get back, some of the stressful politics will have resolved too. This whole thing would be less challenging if I were at home instead of work, but I guess a less challenging life is a boring life and makes for a boring person. Ha ha. I’m going to be the most interesting woman they’ve ever seen. Satan has awakened my muchness, and he WILL hear me pray. Watch out world, you WILL hear me bless the name of the Lord.
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