JANUARY 27, 2014 - ?? DAYS PRE OP
I still haven't heard from Dr. Bird's office. I hate waiting. But Mom says waiting isn't an idle time, it's active time. It's time you use to prepare, pray, decide what you're going to believe no matter what the answer is, and do your best at life. I'm feeling pretty good today and I haven't had any pain medication. I didn't sleep much because of the lack of pain meds, but surprisingly I'm more awake. It's sounds crazy but makes sense if you think about it. The meds aren't weighing me down, so I'm more awake even though they also cause insomnia. I'm sure the coffee is helping to a degree too...
MARCH 25, 2014 - TWO WEEKS POST ASPIRATION
I'm feeling so good since my aspiration procedure a few weeks ago. I finally feel like a real person again. I have been able to scrub cases without hurting and run around work like mad, which is good because it's been crazy lately. I've been off meds since then and I've felt more focused and alive... so much so that I've been considering not having surgery at all actually. But I know it needs to be done. I know the more I have aspirations done, the more risk I'll be at for scar formation and contrast reactions, and I can't very well be going through this every few years and have to wait on nephrology's schedule to get it taken care of, especially if I'm in another country and can't get away for that amount of time. I had a small panic attack yesterday, thinking about surgery. It was the first one I've had in a long time. I think it was the perfect storm of memories, between listening to Switchfoot (which was always my pre-procedure focus music), smelling saline syringes, having a suicidal patient on the table, and being cold. It suddenly came flooding back to me, things my mind has graciously let me forget as a defense mechanism. But I suppose that means I'm strong enough to handle them now if they're surfacing. I had the worst chest pain and tightness and I could feel my lungs starting to spasm. I texted Cord and he came and gave me a hug, telling me it would be alright. I couldn't stop myself from crying a little but quickly swallowed the tears as soon as they came. I had a patient to take care of and I couldn't lose my focus. I think I'm over it today. It's not that I'm afraid something life threatening is going to happen. I'm just afraid of the pain. It's what I remember most. Excruciating pain. But at least I know to expect that this time... not sure if that makes it better or worse but oh well...
https://www.youtube.com/watch?v=p9XcG7e9a4E
This is my honest, unedited health journal as I learn to deal with renal diverticulitis, a chronic kidney condition.
Saturday, April 12, 2014
37 seconds well used is a lifetime...
Wednesday, April 2, 2014
Magnificence
DECEMBER 5, 2011 - FIFTY EIGHT DAYS POST OP
I’m currently packing a bag to go to the hospital tomorrow for the last time. I get the nephrostomy tube out and then I’m home free! I am SO excited. Well, it turns out that I did, in fact, go to the ER the last time I wrote. It was around midnight and the pain had grown so bad that I could hardly talk or walk out to the car. Mom said since it was midnight, Dad’s birthday was officially over and she would not longer keep putting things off (even though I was the one to go to their room and say I wanted to go to the ER. Actually, now that I remember, it was Megan, but the decision was mine).Turns out I had a massive bladder infection coupled with a UTI. They took out the foley and pumped me full of Rocephin, Dilauded, and Zophran and then sent me home around five or six in the morning. I pulled my first all-nighter! It wasn’t quite as fun as I wanted it to be though. Ha ha. My eyes were so puffy the next morning but words can’t describe how much better I felt.
The following Monday, I had the stent removed. It didn’t hurt at all, although the Demerol and antibiotic shots in my rear did. I totally related to a friend’s affectionate name of “Rambo Nurse” as I bent over the table. But it’s one more experience I can say that I had. Apparently I was pretty loopy afterwards too. I was stumbling through the halls, pushing the valet guy out of the way to get in the car, and fussing at Mom on the way home. The weird thing was, I was conscious of all of it, but for some reason I couldn’t seem to stop myself. It was almost worse than not being aware of what I was doing. My brain kept shouting for me to stop acting like an idiot, but my body wasn’t paying ANY attention at all. Of course, after the six hour nap, I apologized for all of it. Mom only laughed and said something along the lines of she “enjoyed the entertainment”. Good times.
It’s been interesting looking back on this and somehow remembering the small moments of fun that broke through the dark clouds of this experience. I remember so well the nightmares and the pain, the nausea, vomiting, sweating, headaches, back aches, fevers, frustration, anger, depression and confusion; being poked, prodded, and nudged by people I don’t know, being bathed by people I do know, the embarrassment, and all the insecurity that came along with this mess. But somehow more than that, I remember the visits, the home-cooked meals, hanging out with Steve-Pa and Grand-Patti, staying up watching House Hunters until I fell asleep, talking with Mom at four every morning while she put lotion on my back or patted my head with a cold cloth that only she knew how to prepare correctly, walking through the Garden of Hope outside the hospital (or the “Weeds of Hope” as Mom so affectionately named it), coloring with Emily and Alyssa, playing cards with Layna and Catherine, sitting on my back patio petting Sadie and talking nonsense with Wesley and Alex, getting a hug and a CD from Jake Hamilton, eating a whole delicious steak that my amazing Dad got me to feed my cravings, getting a Dairy Queen dipped cone and listening to country music with Dad to distract my body from the Dilauded withdrawals, and the list goes on and on. I choose to remember the good. I choose to believe that God is continually making my life beautiful no matter what the world brings. I choose to celebrate over every single small step, every inch, every sign of forward movement. God deserves praise for everything. Every single act of God is a huge deal. Nothing is insignificant.
Well, I do have to get up at five fifteen tomorrow morning because I’m interventional radiology’s first case, so I will write more later when I have more. The name of the Lord be praised.
JANUARY 22, 2014 - PROCEDURE DAY!
I am now sitting in the same chair I sat in two years ago when I was waiting for a CT with contrast (that I actually didn’t end up getting done) in Shands radiology. Only this time I’m waiting for an actual procedure. I’m having my needle aspiration plus/minus ablation of my diverticulum/cyst. I’m not nervous at all, except that I’m worried we’re in the wrong waiting room, ha ha. I’m just ready to get in a bed and then I’ll feel better...
Well, turns out I was in the right waiting room after all. Mom and I were both getting nervous and decided to walk to the other waiting room just to see. We didn’t even make it past the front desk of the one we were in and the receptionist called us over to put a hospital band on me and tell us they were ready for me. We went straight to holding and got in a bed. Then waited for several hours which is always the worst part. Finally they took me back to the radiology room and got me all set up, then Dr. Voegel was apparently caught in another case so they unhooked me from everything and took me back to holding. By that time, Mom and Dad and Megan had already left to go find some coffee. And they took everything with them. So I sat for about thirty minutes singing in my mind, ha ha. Down the row from me in the line of beds was an older gentleman and his wife. She kept staring at me, sitting alone in that bed. I smiled at her so she wouldn’t think I was sad or hurting. I do have a family and they aren’t terrible for leaving me! I thought in her direction. They didn’t know! But she kept staring at me with furrowed eyebrows anyways. I watched the nurse next to me at the nurse’s station make phone calls and try to find my doctor. She was the same nurse who helped me when I went into shock the first time I had a CT here. And she remembered that it was Mom’s birthday that day and Bethany was there too. Boy, do I have a history with these people. Finally, Dr. Voegal was free and they rushed me back to the procedure room so I could be next. They had me on my stomach with my hands above my head and blankets tucked around me. It was actually more comfortable than any other procedure I’ve had done (except maybe when I went under general anesthesia, ha ha). I fought the sedation this time though because I wanted to be aware of all of it. It was really cool and I wanted to learn. The adhesive grid they tried to stick to my back was too big and wouldn’t stick so Dr. Voegal pulled a paperclip out of his pocket and taped it to my back. He said, “Oh yeah, we’re real high tech around here.” I laughed because it sounds like something we would come up with in the lab too. He took a picture with the paperclip on and then pulled me out and drew some marks on my back to know where to go in. I felt when he gave me the lidocaine, but it wasn’t bad at all. Then I felt pressure when he was putting the needle in, but again it wasn’t terrible. It was weird when they put me back in to take a picture and I could feel fluid running down my side. I wonder if that’s how our patients feel when our doctors are a little messy. But before I knew it he had pulled fluid out and he stuck the syringe in front of my face. “What does this look like to you?” He asked. Urine. It looked like urine. “Do you think it might be serous fluid?” I asked, trying to be hopeful. He shook his head. “It looks like urine to me.” Then he injected Gadolinium contrast in the pocket and they had me roll up on one side and then the other so that it would flow into my ureters if the pocket was connected. Then they took a picture. According to the picture they couldn’t see where it would be connected, but because of the fluid, he still didn’t ablate it. I remember feeling like I wanted to cry because he wouldn’t ablate it. I don’t think I really understood even though he tried to explain and said he was sorry I was disappointed. It was just the drugs getting in the way though because when I woke up after dosing off several times in the holding room I remembered what he said with clarity and wasn’t upset at him anymore. I had a little pain afterwards and they gave me 2mg of morphine, which my body just laughed at after being back on Dilauded. They let me take one of my own pills which usually take about an hour to kick in, but it wasn’t a pain that I couldn’t bear so I didn’t ask for any more. Shortly after they woke me up and asked if I wanted to go home. Of course! So we got me dressed and then went to Sonny’s for wings. And of course I slept for the rest of the day. I’ve been sore since, but it hasn’t been terrible. No spasms or anything. It was an easy procedure. Praise the Lord!
I kind of had a moment the other day because I think it hit me what I'm about to go through and I suddenly decided that I don't want to. But I talked to Alex for a bit and it made me feel better. I know what I'm in for, maybe not every detail, but for the most part. At least I won't be disappointed every day when I'm not allowed to go home from the hospital or when I have to have another drain placed. And I know if I made it through before and felt good afterwards, I'll make it through again and be back to normal before I know it. And I know I have plenty of people surrounding me who will be there no matter what and who will love me. No matter how isolated this makes me feel at times, I have to remind myself that's not really true. Like I said two years ago, going through things like this sift out your relationships and you learn who's only there when it's good, who only pops out of the woodworks when it's bad, and who will be there for both. I don't mind people who come out of the woodworks to help if they truly are in it to help. Some people's ministry is just to help those in need whenever or wherever they are. And when I'm in need they show up. But the people who truly speak to me, who truly touch me, who truly heal me, are those who are always there. There are just those people who I could call, text, or go out with at a moments notice. And they make me feel better than anyone else. And not to downplay the others who help, but I feel like to whoever may read this one day, I need to honor those people who are always there. My family is there no matter what. Mom probably gets me more than anyone else in the world and she always tells me what I need to hear, which is the truth. No matter what's going on, she always makes it work so that she can be there for me. She has stayed with me in the hospital every time, even the 14 days in a row that I stayed after surgery. For some odd reason I would wake up at four every morning and ask her to put lotion on me (my skin was really dry and sore because of fever). She would always get up and do it for me no matter how tired she was and we would sit up talking about life until I fell back asleep. Those were my favorite moments... and although she jokes that we value those moments at four in the morning entirely differently, she always gets serious right after and says that she loved bonding with me. She knew when I was hallucinating and she was the only one I believed when she said she was real. She and I both dream very lucidly, so even in my crazy state of mind I understood that she knew what she was talking about. We share a brain, although I'm pretty sure most of the time she has the bigger half.
Dad is always the comforter. I know he hates to see me hurt and he dreams about my destiny just as much as I do. He takes me out for chocolate milkshake breaks when I just can't stand it anymore and need a distraction. He makes me laugh even in the midst of tears (NO ONE CAN MAKE HIS SOUND EFFECTS!!!). Bethany still calls and talks every time I have something done even though she's busier than I am (and that's saying a lot!). Megan dances for me or just leaves crazy messages on my phone and somehow she always knows the exact times I need them. She and Bethany both left to go out of town about half way through my hospital stay and all of us were in tears. Alyssa always comes and crawls up on my bed just to sit so I'm not by myself. She even did the same thing in the hospital, playing cards or filling out coloring books with me as entertainment. All I have to say to Layna or Catherine is "Hey so... I like you..." and I know I'll be on my way to an ice cream date complete with the Jonas Brothers (or some other outrageous selection of music) within a matter of minutes. They came to the hospital every day (and paid for that crazy parking) even when I was sleeping just to be there... and empty my foley (so proud of you, Layna... I know it's totally not your thing). I know I can text Alex at any time of day (and tell him just about anything, too) and he will always text me back with a solution or a prayer even if he was sleeping. He will always be my greatest opponent in our wii "couch bowling" tournaments. In short, these people have been with me for a long, long time. They've seen me at my worst and I've seen them at their best. They will always be magnificent to me. Thank you.
Labels:
diverticulitis,
friends,
grace,
healing,
hope,
kidney,
perspective,
Shands,
trust,
urology
Sunday, March 30, 2014
Daddy knows best.
NOVEMBER 10, 2011 - THIRTY THREE DAYS POST OP
Today I woke up with all the signs of a UTI, but I waited to call Beverly (one of Dr. Bird's secretaries) until later in the morning than I should have, I believe. Today is a surgery day for Dr. Bird so I should have called as early as possible since getting ahold of him is more difficult than non-surgery days. But I kept trying to ignore it and put it off because tomorrow is dad’s birthday and I really don’t want all of this to get in the way of that. Dad has sacrificed so much for Mom and all of us, and I just want to give back to him and spend the day focusing on JUST him and giving him honor. But right now at 11:30 pm we’re waiting on the on-call resident to call us back and give his opinion because it’s just killing me. And now I really regret not calling earlier because really, what is he going to do but call us into the ER to be seen? I’m trying to push down the guilt that rises with the lump in my throat every so often, but it’s hard not to feel that way. My parents tell me it’s their job as parents to do these things and it’s not at all a burden to them as I will understand when I have kids. I guess it’s just hard to understand right now. Well the doctor on-call just called back said I’m most likely having bladder spams. I haven’t taken Oxybutinin (my anti-spasm med) for a couple days so that is likely. I took one now and we’ll see how it works. I was sincerely hoping Dr. Bird would call back and fit me into the office to get the foley out today. Oh well. It’s surprising he never called back, actually. He’s usually pretty good about that. He generally calls within ten or fifteen minutes with an answer. Well, I feel a little relieved the doctor on-call didn’t call us in right now. I would have felt awful. The sharp pain has kind of subsided while I’m sitting here which is a first all day. Hoping and praying for total relief. As always, I will praise the name of the Lord.
JANUARY 17, 2014 - FOUR DAYS PRE OP
So my appointment is scheduled for the upcoming Wednesday. Rebecca (Dr. Bird's PA) tells me that they plan on using Gadolinium based contrast to image the cyst/diverticulum, so I'm hopeful that there will be no adverse reaction to it. I'm still taking 50mg of Benedryl every day leading up to it just in case.
Thursday night, I had somewhat of a mental breakdown. I was just through with life. I feel that I've reached the edge of my sanity a lot faster than I thought I would. Work hasn't slowed down one bit and it's a serious battle to get through one day. I feel bad, like I'm gonna leave the lab in a lurch, but I don't want to put surgery on hold any longer. It's not my fault that this has happened to me. All this scheduling has been done by the doctors based on when they can fit me in and when they think is best for my health. But they don't know what it's like to hurt, to have something in you that doesn't belong and then to constantly subject yourself to a physically and mentally demanding environment for 10-12 hours a day. And then I think I'm just tired. I don't want to go out where theres a bunch of people constantly asking what's wrong and what I'm having done and "in Jesus name, I rebuke that thing" and "you're not meant to go through this so young" and "I'll pray for a cyst and not a diverticulum" and "you're not going to have surgery in Jesus name". As if they know. And as if I should pray for one particular disease over another. And as if God couldn't possibly be working a process though all of this. I can't stand telling the same story over and over and somehow keeping my mouth tied with a smile while they say all that. I know they probably mean well and probably think they're being encouraging. Or maybe they don't know what to say. Clearly they don't know the RIGHT thing to say, which is actually nothing at all. But it's just completely miserable to me to have to endure someone who has no investment in my life grab me and begin to declare "God's will" in my life. They have no idea, and that actually does more damage to me than healing. But I lost it all on Dad the other night. I couldn't stand any more of it. And it broke my heart to see him upset because I was being terrible to him. But still he came out into the office and sat with me. He knew it was more than me just being mad, it was me falling apart. We talked for a long time about what we believe for and what we don't know what to believe for, how I need to have grace for people even though their responses only remind me of what I don't want to think about, and what God's will for me really is. I know He cares for me and I know he doesn't want me in pain. Dad talked about supernatural healing, which I know is one of his heart's deepest desires. Then he laid hands on me and prayed, with tears in his eyes, for my healing. This is heaven, I thought. This is what it's about. He's praying because he loves me. And while I'm still having to deal with pain today and I still have the procedure to go through on Wednesday, that moment meant more to me than probably any other moment of prayer in my life. He healed my heart. And I know he's gonna keep praying until I'm healed. Not forcefully, not to backhandedly suggest that I live in unbelief, but because he loves me. I only pray that God will help me with my attitude. Reading some of these old entries, I discovered I had such a good outlook and a good attitude, especially compared to now. I have been mean and terribly petulant. I pray for forgiveness and HELP. Please.
Labels:
diverticulitis,
healing,
kidney,
pain,
perspective,
renal,
Shands,
surgery,
trust,
urology
Friday, March 28, 2014
Something old, something new...
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.
Labels:
diverticulitis,
health,
kidney,
pain,
perspective,
renal,
Shands,
surgery,
urology
March 28, 2014 - Let's start in the very middle... it's a very good place to start...
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