Top of the Monday to you.
I am feeling nostalgic. Y'all...it's basically April. You know what that means. I've basically had my dad's kidney for a year. I can't believe I haven't touched on all the things that happened last year in more "throwback posts." It's actually really fun to go back 12 months from a certain point and read about what my life was life and especially what my mindset was like. I guess that's a really cool thing about having a blog. The internet never forgets. [Side note: I feel like that's an awesome tagline for a movie about things that we posted on the internet in our past coming out of our computers to terrorize us.]
Fun Blog Fact: this time last year I was going under for an outpatient procedure to have my PD Catheter placed. PD catheters allow you to participate in home dialysis, which is what I getting ready to do until--MIRACLE!-- God totally came through for me with a new kidney. Before I let you read about it one more time, because memories are the best, here are three things you may not know about the surgery and/or my PD catheter:
1. I was INSANELYE nervous about this surgery. It was definitely depressing to think about having to start dialysis. I get this feeling that some people view dialysis as an OK thing. I don't know, I just get that feeling. I could be wrong. But I just feel like people think dialysis is a great alternative to kidney transplant. Like, "Oh just do dialysis, right? That works, right?" It's not an awesome alternative to having a transplant. It's time consuming and inconvenient and not the greatest way to live life. But I digress...I was really nervous about my surgery because I hate going under. Yep! I was so freaked out by the anesthesia. I was convinced that something would happen to me while I was under. Most notably, I thought that I would wake up in the middle of the surgery and feel the knife cutting into my skin and I would not be able to move around or scream. Yep....I know. You don't have to tell me that I have issues. Pray for me.
2. Cats and stomach surgery don't go together, surprisingly. While I was recovering at home, my cat, Burton, figured my healing would be the best possible time to use my newly sliced open stomach as a springboard for his daily acrobatics. Cats really are evil creatures. Please pray for his salvation.
3. The scar that I had from surgery is hardly visible now. It's so funny but sometimes I forget I ever had that surgery. The two scars I have from the surgery are finally starting to blend in with my natural skin color. I have no more pain in that area. I have to remind myself sometimes that the whole tube era...actually happened to me! I was that girl with a plastic tube coming out of my stomach!
Look how far we've come! Weeee!
Anyways enjoy 10 Things, One Tube, again ....or for the first time if you're new here.
Showing posts with label dialysis. Show all posts
Showing posts with label dialysis. Show all posts
Monday, March 31, 2014
Throwback Post-- Remember When I Had That Tube?
Sunday, February 9, 2014
Things Remembered
“Friendship is born at that moment when one person says to another: “What! You too? I thought I was the only one.”
~C.S. Lewis
I had already walked away from them to put my stash on my table. But I did what a very nosy Jewel would do and walked back up and stood very close to the couple, pretending to grab a pack of barbecue Pop Chips. I pretended to grab other things too, like packets of sunflower seeds, another bag of gluten free cookies, while sneakily pulling tidbits from this man's and woman's conversation. Like a cat, I was waiting for my time to strike, to jump in and show him our commonalities. To show him that even though he is a middle aged, white man and I'm a young, black woman, that we share something. We both know what it's like when our bodies fail us. We both know what it's like when someone tells you that you need something, and you don't have any control over when or how you'll get it.
Several more "fake" trips up to the grocery aisles of my job's employee lounge, the man and woman finally end their conversation. And I take my shot.
"I'm sorry but...did you just say you were on dialysis?"
From the moment the question left my mouth, we were engaged in such a lively conversation you would have thought we were old friends. Anyone walking in would have said, "Wow, they seem to have a lot in common. They must know each other well." The truth was that I didn't know him before that day. Yet somehow, after I asked my question and he answered, it was as if we knew a whole lot about each other.
We exchanged disease explanations and kidney functions. I gave him some tips on getting a donor set up as quickly as possible. I told him about my transplant. I told him about my doctors and my hospital. We made plans to have lunch together.
Ten months ago, I was walking around in that same pantry, grabbing what was probably my fifth cup of coffee for the day. I was exhausted. I looked exhausted. Dull. Bored. Unhappy. Ill. And some might say lifeless. And I would walk into work every day wishing that I wasn't there. Or even wishing that someone could just just know automatically what I was going through so I wouldn't have to explain it to them. That way I wouldn't have to answer a billion "Are you OK?" questions throughout the day. No, I'm not OK, was what I wanted to say all the time. But I didn't say that because, when you have a chronic illness, sometimes it's just not worth getting into with someone who might not even be able to relate.
I hope that I was that person for my new friend from the pantry. I hope that I was the person who can relate. The person for whom you don't have to explain everything to. I hope that I was the person who just gets it already.
I wonder if he knows that he was that person for me. I'm nearly a year out of transplant and technically, I don't have kidney disease anymore. It was still such a blessing to meet someone who just gets it without me having to explain it to him.
My new friend from work has kidney disease and is currently on dialysis.
Like me, he needs a kidney transplant.
If you or anyone else you might know is interested in becoming a living donor, feel free to leave a comment on this post or email me at jeweledwardsdc@gmail.com.
Monday, April 15, 2013
10 Things, One Tube
Prior to the PD catheter placement surgery, I didn't know what to expect, as far as how I would feel after the surgery. Everything happened so fast, it seemed. I did a little research online, including my favorite type--video research on YouTube--but other than that it was hard to know how I would feel after the surgery and what the rest of my life would be like with this tube in my stomach. And by "rest of my life" I kind of mean, next few weeks, months if things just end up not unfolding like I hope they will.
My catheter is just about healed all the way up, and next Monday I start dialysis training for half a day, for a whole week. A lot of people have asked me how I feel about this tube, what it looks like, do I feel like an alien, do I feel like an iPod (I think that's just my sister Danyelle though). So here we go, 10 things I've learned in the past 12 days with a catheter in (with pictures at the end for people who want to get to know me a lil better ):
1. Your abdominal muscles control everything. And I mean everything. Well, maybe not everything, but most things. I hope that there will only be one other time in my life where I'm begging, pleading, and crying with my fiance to not make me laugh because last week, laughter became synonymous with literal gut wrenching pain. And so did sneezing, walking, getting out of bed and going to the bathroom...both numbers.
2. Stomach surgery will cause night terrors. The first night after my surgery, the pain medication and the numbing agents had worn completely off and I found myself at war with my mattress, trying to get in a comfortable sleeping position. I should have known: comfort and stomach surgery do not go together. I feel so bad for Ben because that first night I moaned and groaned and screamed "THEY CUT ME?! THEY CUT ME?! WHYYYYYY?!" Why, indeed.
3. Exercising is bad, at least right after the surgery. Because my abdominal muscles were pretty much shot and the catheter in my stomach was all new and still sort of bleeding, anytime I wanted to sit up from the lying-down position in my bed, Ben had to help me and slide a bunch of pillows behind my back.
4. Bacteria is bad too. Two days after the surgery I visited Devi, my PD nurse, with my sister Danyelle. During that visit she removed the first bandage I was given, cleaned around the catheter exit sight and rebandaged it. During this process, Devi removed each portion of the new bandage, the iodine and even her latex gloves from each package and emptied them onto a sterile surface. She emphasized the importance of handwashing when cleaning the exit sight and using sterile tools. The catheter is a tube that has a closed end. When that end is opened for too long, it provides a direct access line for bacteria to the inside of my stomach. So taking all the necessary safety precautions when cleaning the exit sight is pretty important.
5. Filling my stomach with even a cup of dialysis solution feels weird. During that first visit with Devi, she flushed my catheter. That involves opening the tube (in a safe and sterile way), connecting it to the PD dialysis solution bag, and letting about a cup of fluid into my peritoneal lining, then draining it right after. And we repeated that for about 4/5 times. She did this to make sure the catheter wasn't filled with blood or clotted. When the liquid entered my stomach, I felt a little bit of cramping in my pelvic area. I don't know if this feeling will go away with time. I have to remember that my catheter is still new and is not all the way healed.
6. Ben and I look funny in those SARS masks. When cleaning the exit sight and doing dialysis, every person around the catheter has to wear a mask covering their nose and mouth, to prevent the spread of bacteria. Ben and I gave ours a try when we had to change my bandage together for the second time.
7. A shower is out of the question. Since my catheter is still healing and covered in a bandage, I can't get that portion of my stomach wet. So for the past 12 days, I've been bathing in about 5 inches of hot water in our bathtub.
8. Number 2 becomes number 0. So this might be TMI but it's my blog so HA! And this could be valuable information for anyone about to have surgery. Basically, before you're put under for a surgical procedure they make you drink this highly concentrated ExLax to empty out your bowels. Advice: drink this when you're at home for at least a good six hours. When the procedure actually happens, because of the anesthesia your intestines pretty much go to sleep. They take a long coffee break and stop working. After surgery, it takes a little while for the intestines to wake up. And the doctors will tell you, before they wake up, take precautions! Eat tons of high fiber foods and keep some "supplements" on hand especially if you've had stomach surgery. Or else the same way laughing and sneezing cause pain, going to the bathroom will also bring you the same amount of pain. Real talk.
9. I can still be cute with catheter. I was worried about how I would look with this tube in my stomach, both in and out of my clothing. Hey, I'm human. But surprisingly I haven't had any problems. And my stomach, which was significantly bloated after my surgery, went down to its normal size.
10. It's easy to forget. Now that a lot of the pain has subsided, I'm starting to forget that it's even there. Even when I lift up my shirt to get a glimpse at it, I think "oh that's not so bad." And I'm sleeping a lot better nowadays, able to sleep in my normal positions too. Some days I think, I might actually be able to do this whole dialysis thing.
And NOW for the good stuff. Zee photos. The following pictures are rated PG and feature some brown skin and cords emerging from someone's stomach.
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| Jewel, by day. |
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| Jewel, the alien. |
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| With this catheter, I can now drink all my sodas again...along with a lot of toxins and acid. |
Topics:
dialysis,
doctor's visit
Friday, April 5, 2013
Tube-in-my-Stomach UPDATE
Originally, I was going to post a video I made of myself on my iPhone a few hours after the surgery. Naturally, since it's technology, something went wrong and I wasn't able to upload it to the blog for today's post. In case I don't get to upload it later, the gist is that the surgery went well. They gave me Valium. I think they also gave me the Michael Jackson drug. So I was OUT. I spent the rest of the day/night resting up in bed, with moderate soreness.
Everybody told me day two would be worse. And everybody was right.
The good news is that I'm writing this at the end of day two and I'm regaining a lot of my mobility. My stomach still HURTS, and I can't believe I let someone cut into it in two different places. Of all the surgeries to get, I feel like stomach surgery is one of the worst. EVERYTHING is connected to your core muscles-- laughing, peeing, hell, even walking is. So it's been a bit rough. But I'm making it.
Serious shout out to the great doctors at Healthqare. I was really nervous before the procedure but they were super nice and made me feel really comfortable. And that place is serving some seriously good Apple Juice. For real!! Why do the hospitals have all the good food??
Also, thanks to my baby sister, Danyelle, who I don't write about that much on the blog because we don't have the same blood type so she's not relevant to the conversation. JUUUSSSST KIDDDDING! She is relevant, and one of the most generous people I know. Thanks to her for driving me to my doctor's appointment on Friday.
And finally...goes without saying, thanks to Ben. You know how I feel about you. And no words I write on this blog will ever be able to convey it.
Everybody told me day two would be worse. And everybody was right.
The good news is that I'm writing this at the end of day two and I'm regaining a lot of my mobility. My stomach still HURTS, and I can't believe I let someone cut into it in two different places. Of all the surgeries to get, I feel like stomach surgery is one of the worst. EVERYTHING is connected to your core muscles-- laughing, peeing, hell, even walking is. So it's been a bit rough. But I'm making it.
Serious shout out to the great doctors at Healthqare. I was really nervous before the procedure but they were super nice and made me feel really comfortable. And that place is serving some seriously good Apple Juice. For real!! Why do the hospitals have all the good food??
Also, thanks to my baby sister, Danyelle, who I don't write about that much on the blog because we don't have the same blood type so she's not relevant to the conversation. JUUUSSSST KIDDDDING! She is relevant, and one of the most generous people I know. Thanks to her for driving me to my doctor's appointment on Friday.
And finally...goes without saying, thanks to Ben. You know how I feel about you. And no words I write on this blog will ever be able to convey it.
| Ben and I engulfed in daytime trash TV before the surgery. |
Topics:
dialysis,
hospital visit
Thursday, March 28, 2013
The moment when your realize you need a miracle.
I'm scheduled to have my peritoneal catheter placement surgery on Wednesday, April 3.
I guess I just feel sad; not even really scared anymore. The shock and fear is starting to wear off. Reasons why I'm sad:
- I have to have surgery;
- I have to pay money;
- I have to have a tube coming out of my stomach (attractive);
- I have to make all these extra doctor's appointments;
- I have to postpone the honeymoon.
I know I shouldn't say it, but my life SUUUUUUUUUCCCCKKKKSS right now. And honestly, thinking about how "things could be worse" only adds to the depression. So I won't be doing any of that.
Today, I'm making a concerted effort to remind myself of all the things for which I should be thankful.
I'm also trying to think of ways that I can stay positive. Because as you know, *just smiling* is not staying positive. It's smiling and pretending everything is OK.
I'm also trying to figure out what this scripture is saying to me:
Matthew 17:14-20
"At the bottom of the mountain, they were met by a crowd of waiting people. As they approached, a man came out of the crowd and fell to his knees begging, 'Master, have mercy on my son. He goes out of his mind and suffers terribly. Falling into seizures. Frequently he is pitched into the fire, other times into the river. I brought him to your disciples, but they could do nothing for him.'"
"Jesus said, 'What a generation! No sense of God! No focus to your lives! How many times do I have to go over these things? How much longer do I have to put up with this? Bring the boy here.' He ordered the afflicting demon out--and it was out, gone. From that moment on the boy was well."
"When the disciples had Jesus off to themselves, they asked 'Why couldn't we throw it out?'"
"'Because you're not taking God seriously,' said Jesus. 'The simple truth is that if you had a mere kernel of faith, a poppy seed, say, you could tell this mountain, 'Move!' and it would move. There is nothing you wouldn't be able to tackle.'"
I'm also thinking about how it would really take a miracle to stop the catheter placement.
And I'm realizing that I am helpless [Unable to defend oneself or to act without help] at this point.
I'm also trying to decide if I'm also hopeless [ Having no hope; despairing.]
I know this post was filled with random thoughts and things, but "sometimes it be's like that."
Oh and one more thought: right now I kind of wish this had never happened to me.
OK, one last thought: I can't change the fact that this has happened to me. It's happening. This train of "sucky health/life" is going full speed ahead and I'm strapped to one of the passenger seats and can't get off even if I wanted to. But I'm really hoping that when this train stops, I'm in someplace awesome, and that it was all worth it in the end.
Topics:
brain of a sick person,
dialysis,
Matthew 17,
wedding planning
Friday, March 22, 2013
The best thing about my dialysis appointment was Krispy Kreme
On Monday, March 18, Ben accompanied me after a long workday to my first home dialysis consultation. The home dialysis nurse,Devi, was going to teach me all about what to expect, how I do it, where to do it, and how many times. On the way to the appointment, I was pretty calm actually. Maybe even excited?
There weren't many cars in the parking lot. Once I put the car in park, I started to feel the first quickening of my heartbeat.This was really my first time at a dialysis center. As soon as we walked into the building, the scent of antibacterial spray and bodies flooded my nostrils. It's hard to describe it any other way, but basically, it spelled like a hospital: suspiciously clean.
In a little glass cubicle was Devi. She smiled at us and led us to her office and started the Q&A period. She asked me about my GFR and what type of dialysis I'd like to do. I'm looking at doing continuous ambulatory peritoneal dialysis. CAPD is pretty easy to explain, surprisingly. CAPD patients have a catheter (plastic tube) inserted into the lining around their abdomen. This procedure requires surgery. The catheter stays there and about four times a day patients connect the tube to a bag of liquid. Naturally, the liquid flows through the tube into an area below patient's stomach. Think of your stomach having a long straw sticking out of it, and sucking on a huge capri son bag until it's dry. That liquid stays in the stomach for a few hours. Afterward, the patient connects another bag to the tube and that bag removes all the hours-old liquid from the area below the patient's stomach. The liquid that comes out is usually yellow, the color of urine, because it's the waste that your kidneys are not removing.
We watched two videos on ways to do this. And each video followed a process: you are greeted by an very happy and enthusiastic, and nice looking person. Oh but they have a secret: they have kidney disease...just like you! What a surprise. How do they manage to stay so happy? Well you, as the viewer, don't have to worry about that. The happy person explains that it wasn't too long ago that they too were receiving the call to do dialysis from their nephrologist. This is usually done with a dramatized flash back to when the "happy person" was suffering with kidney disease and looked really run down and, frankly, scary. The "happy person" then talks about nervous they were about starting dialysis but that their dialysis team helped them overcome their fears and now they're able to live a full life, raise a family, run a restaurant, and travel to conventions. The End.
It was a pretty convincing video, which is probably why they made it. At many points throughout the movie I found myself thinking, "I can do this. I can do dialysis and have a great life." Afterwards, reality set in, which is mostly just fear. Devi asked if we had any question then she really laid it on: I have to do dialysis, she said, if I want to live. This is very true. But she added that I will feel much much much better than I feel now. Devi said, I'll feel like I'm cured if I do home dialysis, which she thinks is a good option for me. Hemodialysis, the kind I knew the most about, has many more complications and risks.
I could feel warmth rush over my face and my eyes started to sting with the pain of trying to hold back tears. As calm as I was going into the dialysis center, it wasn't until 3/4 through the visit that the reality of the situation fully set in. I don't want to do dialysis. But I have to. I remember thinking I don't want to do this, life is not fair, and this is highly inconvenient.
"Do you want to see the hemo lab?" Devi asked. When we first entered the center. I could see behind a glass window separating the lobby and the lab. I saw two people, an old man and a middle aged man, sitting in chairs, hooked up to machines. One was reading, one was napping. It all looked so sad. I wish I didn't have to say that, but that's the truth. Those videos they make you watch, they have to be positive, so that you as the patient understand that you need these procedures to survive. They want to encourage you. To make it look easier than it really is. In some aspects, it is easier. And there are worse things that could happen to a person. But the fact is: being hooked up a to a machine for four hours a day, is not exciting. It's not awesome. It's not fun. It's sad. If it were any of the other things more people would be clamoring to do dialysis.
When we left the center, it was pouring rain. Ben drove while I sat in the back seat mulling over things. He reached over the passenger seat and held my hand. "Do you want to go to Krispy Kreme?" he asked, just as we were passing one of two locations within 30 min of our apartment. I asked him if he wanted to go, since he had just passed the place. Suddenly, we were making a U-Turn and pulling into the parking lot. In less than a minute we found ourselves in front of this:
Our excitement was palpable, just like the scent of the fresh donuts being pulled off the icing conveyor belt. Like four-year-olds we fumbled about for 10 minutes trying to decide which 12 donuts to order. We needed to get equal parts glazed and filled, with one or two cake donuts thrown in. And of course we've got to have some of the warm originals. We finally placed our order and took our seats to devour the dozen donuts.
Despite the depressing dialysis treatment lecture, this was one of the best days of my life. I know, it's hard to believe. Ben and I couldn't wipe the smiles off of our faces as we stuffed them with donuts. I decided that instead of eating all six of the ones I picked out, I would eat one full one and then take bites out of all of the others. As I moved from cinnamon apple to raspberry filled, I looked up at Ben, chipmunk cheeks filled with an Oreo Cake donut, and I wished I could stay in that moment forever. I kind of forgot about what had transpired about a half hour before at the dialysis center. The combination of sugar and Ben's presence was making me deliriously happy. I thought, it's so nice to have someone to eat donuts with me. It's so nice to have someone to go with me to my to doctor's appointments. It's so nice to have someone who knows that after a depressing doctor's appointment, that naturally a trip to Krispy Kreme is what comes next.
Ben and I don't know many other engaged people. And the ones we do know don't have to deal with anything like this-- a test of your "in sickness or in health" vow before you've even have to vow it! I would love to just have a normal engagement, you know, one where you just focus on planning your wedding, honeymoon, and maybe talking about buying a house. But that's not our journey. However, I'm grateful for the one we're on. Some people ask me if I'm scared about getting married. But I am not. I am 100% ready. I think what makes some people scared is the uncertainty of what's to come, how their partner will be. Because of our special circumstances, I know 100% that I am taken care of, loved, appreciated, and protected. I don't worry about if Ben is going to be there for me, because he already is.
After seriously demolishing a half a box of donuts, we lingered for another 10 minutes to watch another fresh batch of donuts being made. We even rooted for some of the underdog, deformed donuts to make it into the Krispy Kreme fundraising boxes, but they really do catch those quick! I looked around the restaurant. It was pretty empty except for a family with two kids, doing almost the exact same thing, marveling at donut creation. This is what some families do---they take trips to Krispy Kreme, to have a special treat. That day I was so happy to be there, watching donuts get fried, with Ben, one/half of my new two-person family.
There weren't many cars in the parking lot. Once I put the car in park, I started to feel the first quickening of my heartbeat.This was really my first time at a dialysis center. As soon as we walked into the building, the scent of antibacterial spray and bodies flooded my nostrils. It's hard to describe it any other way, but basically, it spelled like a hospital: suspiciously clean.
In a little glass cubicle was Devi. She smiled at us and led us to her office and started the Q&A period. She asked me about my GFR and what type of dialysis I'd like to do. I'm looking at doing continuous ambulatory peritoneal dialysis. CAPD is pretty easy to explain, surprisingly. CAPD patients have a catheter (plastic tube) inserted into the lining around their abdomen. This procedure requires surgery. The catheter stays there and about four times a day patients connect the tube to a bag of liquid. Naturally, the liquid flows through the tube into an area below patient's stomach. Think of your stomach having a long straw sticking out of it, and sucking on a huge capri son bag until it's dry. That liquid stays in the stomach for a few hours. Afterward, the patient connects another bag to the tube and that bag removes all the hours-old liquid from the area below the patient's stomach. The liquid that comes out is usually yellow, the color of urine, because it's the waste that your kidneys are not removing.
We watched two videos on ways to do this. And each video followed a process: you are greeted by an very happy and enthusiastic, and nice looking person. Oh but they have a secret: they have kidney disease...just like you! What a surprise. How do they manage to stay so happy? Well you, as the viewer, don't have to worry about that. The happy person explains that it wasn't too long ago that they too were receiving the call to do dialysis from their nephrologist. This is usually done with a dramatized flash back to when the "happy person" was suffering with kidney disease and looked really run down and, frankly, scary. The "happy person" then talks about nervous they were about starting dialysis but that their dialysis team helped them overcome their fears and now they're able to live a full life, raise a family, run a restaurant, and travel to conventions. The End.
It was a pretty convincing video, which is probably why they made it. At many points throughout the movie I found myself thinking, "I can do this. I can do dialysis and have a great life." Afterwards, reality set in, which is mostly just fear. Devi asked if we had any question then she really laid it on: I have to do dialysis, she said, if I want to live. This is very true. But she added that I will feel much much much better than I feel now. Devi said, I'll feel like I'm cured if I do home dialysis, which she thinks is a good option for me. Hemodialysis, the kind I knew the most about, has many more complications and risks.
I could feel warmth rush over my face and my eyes started to sting with the pain of trying to hold back tears. As calm as I was going into the dialysis center, it wasn't until 3/4 through the visit that the reality of the situation fully set in. I don't want to do dialysis. But I have to. I remember thinking I don't want to do this, life is not fair, and this is highly inconvenient.
"Do you want to see the hemo lab?" Devi asked. When we first entered the center. I could see behind a glass window separating the lobby and the lab. I saw two people, an old man and a middle aged man, sitting in chairs, hooked up to machines. One was reading, one was napping. It all looked so sad. I wish I didn't have to say that, but that's the truth. Those videos they make you watch, they have to be positive, so that you as the patient understand that you need these procedures to survive. They want to encourage you. To make it look easier than it really is. In some aspects, it is easier. And there are worse things that could happen to a person. But the fact is: being hooked up a to a machine for four hours a day, is not exciting. It's not awesome. It's not fun. It's sad. If it were any of the other things more people would be clamoring to do dialysis.
When we left the center, it was pouring rain. Ben drove while I sat in the back seat mulling over things. He reached over the passenger seat and held my hand. "Do you want to go to Krispy Kreme?" he asked, just as we were passing one of two locations within 30 min of our apartment. I asked him if he wanted to go, since he had just passed the place. Suddenly, we were making a U-Turn and pulling into the parking lot. In less than a minute we found ourselves in front of this:
Our excitement was palpable, just like the scent of the fresh donuts being pulled off the icing conveyor belt. Like four-year-olds we fumbled about for 10 minutes trying to decide which 12 donuts to order. We needed to get equal parts glazed and filled, with one or two cake donuts thrown in. And of course we've got to have some of the warm originals. We finally placed our order and took our seats to devour the dozen donuts.
Despite the depressing dialysis treatment lecture, this was one of the best days of my life. I know, it's hard to believe. Ben and I couldn't wipe the smiles off of our faces as we stuffed them with donuts. I decided that instead of eating all six of the ones I picked out, I would eat one full one and then take bites out of all of the others. As I moved from cinnamon apple to raspberry filled, I looked up at Ben, chipmunk cheeks filled with an Oreo Cake donut, and I wished I could stay in that moment forever. I kind of forgot about what had transpired about a half hour before at the dialysis center. The combination of sugar and Ben's presence was making me deliriously happy. I thought, it's so nice to have someone to eat donuts with me. It's so nice to have someone to go with me to my to doctor's appointments. It's so nice to have someone who knows that after a depressing doctor's appointment, that naturally a trip to Krispy Kreme is what comes next.
Ben and I don't know many other engaged people. And the ones we do know don't have to deal with anything like this-- a test of your "in sickness or in health" vow before you've even have to vow it! I would love to just have a normal engagement, you know, one where you just focus on planning your wedding, honeymoon, and maybe talking about buying a house. But that's not our journey. However, I'm grateful for the one we're on. Some people ask me if I'm scared about getting married. But I am not. I am 100% ready. I think what makes some people scared is the uncertainty of what's to come, how their partner will be. Because of our special circumstances, I know 100% that I am taken care of, loved, appreciated, and protected. I don't worry about if Ben is going to be there for me, because he already is.
After seriously demolishing a half a box of donuts, we lingered for another 10 minutes to watch another fresh batch of donuts being made. We even rooted for some of the underdog, deformed donuts to make it into the Krispy Kreme fundraising boxes, but they really do catch those quick! I looked around the restaurant. It was pretty empty except for a family with two kids, doing almost the exact same thing, marveling at donut creation. This is what some families do---they take trips to Krispy Kreme, to have a special treat. That day I was so happy to be there, watching donuts get fried, with Ben, one/half of my new two-person family.
Topics:
dialysis,
future husband,
shenanigans
Friday, March 15, 2013
The End of the Road
"Although we've come to the End Of The Road
Still I can't let you go
It's unnatural, you belong to me, I belong to you
Come to the End of the Road
Still I can't let you go
It's unnatural, you belong to me, I belong to you"
Still I can't let you go
It's unnatural, you belong to me, I belong to you
Come to the End of the Road
Still I can't let you go
It's unnatural, you belong to me, I belong to you"
Boyz II Men
I should just start every post with a Boyz 2 Men lyric, right? Some people say every post is better with a picture, well, I think every blog post might be better with a Boyz II Men lyric.
Sigh, so yes, we are get-ting there, to the end of the road. Current GFR: hovering at 7.5, 8 percent. Current kidney donor: none at this time. The decision has pretty much been made for me: it's dialysis time. Damn. Never thought I'd be writing those words. For real though. On Monday, I'm meeting with a kidney dialysis nurse, and then one week after that I'm making my decision: peritoneal dialysis or hemodialysis. It's a big decision. They are two very different methods, but they get the same job done.
Peritoneal Dialysis looks kind of like this : I'd have a catheter placed in my stomach. Then I would connect that line to a bag of "waste collecting liquid" (that's my name for it), and that will do the filtering. Then I drain the liquid out. I'm unsure about this part, but my dialysis nurse says she has some DVDs to show me that should give me a better picture of what's involved.
Hemodialysis kind of looks like this: I'd have a fistula in my arm, a connection between a vein and an artery. During my multiple-times-a-week visits to the dialysis center, I would have a needle inserted into the fistula. That needle is connected to a machine, and that machine collects my blood, cleans it all out, then would put it back into my body. The process can take up to several hours.
This is not what I wanted at all. But funny thing, I actually don't have a choice right now! Well, I do. And my doctor advised me against that choice. That choice would be to really believe God for a miracle that I'll get my kidney in the next few weeks. That path could also lead me to a destination where I'm barely making it on my wedding day, or worse: wedding day is canceled because I don't get my kidney in 2 weeks, and then I end up in the emergency room where they will most definitely hook me up to a dialysis machine. It'll be like a scenario from "House," where I pass out on the street, then wake up in the hospital, going "What happened?!" And the doctors say: "Jewel, we had no choice. We had to amputate...and we also had to put you on dialysis." And then I react: "DIALYSIS?! NOT DIALYSIS!"
Man, I have an active imagination, right? It's due to all those years I spent as an only child when no one would play with me. Anyhoo, I'm looking forward to hearing more about these procedures and selecting which one is best for me.
Side note: I got my blood boosting shot on Wednesday. The nurse, so sweet, said it will probably takes three shots to get me where I want to be. She even gave me a hug afterward! Before getting the shot, the nurse had to read to me every line of the risks and side effects. I kid you not, one of the side effects was "you could die sooner." No joke! In those words. Usually, for drugs, you expect the typical--headache, fever, stroke, etc. But this drug explanation spelled out in plain English "headache, fever, stroke, heart attack...oh! and you could die sooner. FYI." I started wondering if I even wanted the shot! The nurse assured me that she's never heard of anyone at our office dealing with any bad side effects.
So the other night, as I was driving home from Bible Study, I was CRAVING ice cream. Naw, I thought, I should save my pennies. Plus, I have delicious pineapple and melon at home for dessert. But then, I thought about it again. And as I neared close to a Safeway, I veered into the parking lot, ran out into the cold, ran into the store and got me some ice cream! I was ecstatic. As soon as I arrived home, I went into the bedroom and dropped the ice cream on the desk.
Jewel: Ben, guess what I brought home, to celebrate?
Ben: What?
Jewel: Ice Creeeeaaam!
Ben: Yay, babe! What are we celebrating?
Jewel: Well, I got my shot today, as you know. And one of the side effects was "you could die sooner."
Ben: Oh?
Jewel: Yeah! Can you believe that?! So I thought...well, if I'm gonna "die sooner," might as well eat ice cream.
And the rest of the night was pretty much perfect. We made homemade pita pizzas, ate ice cream before AND afterward, watched an episode of NCIS, and went to bed facing each other, both of us in the fetal position with our heads touching. I know...weird. I said a prayer, thanking God for my family and for just being awesome all around, and thanking him for ice cream. Life is just too short to not eat ice cream.
Topics:
brain of a sick person,
dialysis,
doctor's visit,
Life







