Thursday, July 15, 2010
That being said, I'd like to tell you about a time when I wasn't feeling so positive, and how my attitude was changed for the better. This takes place a couple of weeks into dialysis when I experienced massive leg cramps during treatment, and again later at night.
The first time I felt a twinge in my right foot during dialysis treatment, Leslie's voice echoed in my mind. "You might think you can ride it out because the twinge will go away, but it won't. Let us know so we can stop the machine..." Even though I knew I should alert somebody, my natural instinct had other plans. I wanted to see if I could ride it out. I couldn't.
In an ideal world, fluid would be stored equally throughout the body. Because it's not, the feet and legs sometimes have less fluid in them, so if the dialysis machine pulls liquid too quickly, or tries to pull too much, it can result in a leg cramp.
It starts with a funny twinge that goes from one side of my foot to the other. (This is where I hear Leslie's warning but decided to ride it out.) Within seconds, the twinge is replaced by a massive leg cramp in the entire calf muscle. I squirm in my seat and grab onto the arm rest with white fingers. I try to call out, but my voice is stuck somewhere in my throat. My eyes look from left to right hoping someone will see me and come to my assistance. After several excruciating seconds, I managed to yell something and Diana flies to my side. She looks at my face and knows what's up.
Diana: "Are you cramping?"
Jake: "Yes! Ow, ow ow..."
Diana: "OK, I'll stop the machine."
Leslie joins us. The two of them squeeze a bag of saline solution that is attached to one of the tubes in my arm. This action forces a rush of fluid through my body, giving me some much-needed hydration.
Leslie: "Are you feeling better?"
Jake: "No. I'm still cramping."
Leslie: "OK. We'll get this fluid to you. Are you feeling nauseous?"
Jake: "A little."
Another tech runs over with a medical bib and a small pink plastic tray that I hold under my mouth.
Leslie: "You look pale. If you throw up, try to get it in the container."
Jake: "I don't think I'll throw up. I haven't eaten anything."
Diana opens a breathing tube from a package and hooks it to my nose. She attaches the other end to a portable oxygen machine and turns it on.
Diana: "Breathe deep."
After awhile, the cramp goes away. I feel wiped out. I'm not going to puke, but my stomach is all twisted up. I inhale the oxygen and close my eyes in an attempt to relax.
Leslie: "Did you feel the twinge in your feet?"
Leslie: "Remember, you have to tell us when you feel it. It WILL turn into a cramp."
I laugh. She told me all right. But I am human, and for some reason humans like to experience some bad stuff just to know what it's like. It doesn't make any sense, but I suppose we do it for the experience.
After the session ended, I felt completely drained and exhausted. Even though I was only sitting in a chair for 3 1/2 hours, it felt like I had run a marathon. I wanted to go home and sleep, but I couldn't. I had a full shift of work ahead of me.
The drive to work was OK, but once I sat down at my desk and turned on the computer, I got a wicked case of shivers. I felt cold and tired. I sat there at my desk with my head down and waited for it to pass. It didn't, so I got up and walked around for a bit. I drank some filtered water and ate some breakfast. I felt better, but still very drained. Later in the day, I cried. One of my co-workers told me I would be OK, but I didn't believe her. I cried in my car all the way home.
Later that night, during the British Columbia Olympic opening ceremony, my leg cramped again. There wasn't a twinge like when I was on the machine, it was just a regular cramp in the same spot. Christiana, my girlfriend, asked if they were pulling too much fluid from me during treatments. Maybe I was dehydrated. I didn't know. I just knew I was tired and weak. I felt beat up. I loathed getting up so early, three times a week, and I dreaded feeling so exhausted after each session. I wished I didn't have to work. I wondered if I should take a leave of absence until I got used to all of this...
Suddenly, I wasn't very optimistic. I started to feel resentment, anger. I was overwhelmed. I felt defeated.
I didn't try losing weight the first two months of dialysis. Instead, it was a time dedicated to getting used to everything. I didn't feel like exercising, I just wanted to sleep.
The cramps came and went, sometimes worse than others. I told Leslie about it and she made adjustments on the machine. After awhile, we tried transforming the recliner into a chair in the "sitting up" position during the last 30 minutes of treatment. That helped. They also changed the settings so the machine would not pull any fluid during the last 30 minutes. This helped greatly. But it wasn't until I decided to stop taking as many diuretic pills that I really noticed a difference.
You see, diuretics grab excess fluid and salt from the body and forces them into the bladder. (At least, that is my understanding of what they do.) The dialysis machine also takes excess fluid from the body. So I was doubling my efforts with dramatic results. As soon as I cut down from 5 pills twice a day to 2 pills once a day, on my non-treatment days, the cramps stopped completely.
But before they stopped, I scheduled an angiogram at the IMC hospital. The angiogram was the last bit of "work-up" I needed to complete for my pre-transplant screening. I did most of the work-up months prior, but I had to schedule the angiogram after I started dialysis because the dye they use during the procedure damages the kidneys.
I was scared. I knew my organs were failing, but scheduling an appointment that might kill them off completely terrified me. I talked to Dr. Cline about it and he informed me they would use as little dye as possible. He said it was up to me if I wanted to go through with it, but he assured me it would be OK. So I made the appointment.
For those of you not familiar with an angiogram, here's a summary: They stick a needle into your groin, then they slide a tube through the needle all the way up through a main artery up to your heart. There is a tiny video camera on the end of the tube so they can see how your arteries look on a monitor. Your arteries better be healthy because if they aren't, you could have a heart attack during the transplant. Luckily for me, I am extremely healthy for a person with diabetes and kidney failure. What can I say, I have good genes.
I thought this would be an "in-and-out" sort of thing. It's not. You need to schedule a full 8 hours for the whole experience. I wasn't told this beforehand, so when Christiana and I arrived at the IMC, I was shocked at the discovery. Chris had a feeling it would be all day, because someone she works with had one done recently and told her about it. I wasn't ready for this, and with all of the cramping in my legs, the early morning wake up's, the exhausted feeling after dialysis, being diabetic for 32 years, pricking my finger five times a day, the low blood sugar moments, the high blood sugar moments, my failing kidneys, dialysis- EVERYTHING just seemed to pile up on my shoulders as I lay there in the hospital room before the procedure.
I went inside my own head and stewed in a swarm of negativity. Christiana could see the distress in my face and she tried to console me, but I wouldn't have it. I was angry. Enough was enough. I didn't want to do any of it anymore. I wanted to give up. It wasn't worth it.
The procedure went OK. The team of specialists who performed it were awesome. They were laughing and cracking jokes with me the whole time. I remember thinking that if I lost my current job, I should come and work here because these guys know how to have a good time at work! Of course, the pain killers helped a lot and I even flirted with one of the female docs. She had beautiful half-Asian eyes...
Afterward, I was wheeled back into the hospital room where Chris was waiting for me. I could tell she had been crying. She knew I was in distress and probably felt helpless to do anything about it. In a lot of ways, I think some of the things I've gone through have been harder on her because even though she's a part of it, she's on the outside. The mind can make things seem much bigger than they are when you're not the one dealing with it on the inside.
I should take some time to say that Christiana has been awesome through all of this. She is there for me when I need her, without the tiniest complaint. She is a source of natural optimism. I don't think I could do much of this without her. And that's the truth. Everyone should be lucky enough to have a Chris Jarvis in their lives. She works miracles.
That night, we got home and I plopped myself on the couch while Chris prepared a healthy low-sodium dinner. I was still feeling crummy, but I at least the angiogram was over. I was told my arteries looked good, and I was given the OK to have a kidney-pancreas transplant. I just needed to lose some weight.
Sitting there on the couch, I flipped through several TV stations. I stopped on a program about a girl born without a face. Juliana Wetmore. It was tragic. Here was a four-year old, intelligent, charismatic, strong little girl born without any skeletal structure in her face. You can see pics and videos here: http://www.julianawetmore.net/
I sat there and witnessed Juliana's parents and siblings talk about her with genuine love and admiration. I saw her cry in the hospital because she had to undergo her 25th surgery before the age of 5. She breathes through a tube in her throat, she eats liquid foods through another tube. But if you watch her for a few minutes, you can see the brilliant, positive, strong soul that Juliana embraces. She is a fighter. She smiles with her body, and she gives off complete brilliance... and here I am feeling sorry for myself because I have to sit in a chair three times a week.
I asked myself how I would feel if I had the opportunity to meet Juliana Wetmore in person. Without a doubt, I knew I would feel inspiration. I would share her determination to be the best person I could be, and I would love each day I was here, ALIVE!, surrounded by good friends and family. Each day is bonus, and each one of us has a choice to spend that day in grief, or in happiness.
After seeing Juliana's outlook on life, I choose happiness! I choose optimism!
So I wiped the tears from my eyes, hugged Christiana and told her I loved her.
It was as simple as that. The positivity was back and it was here to kick ass!! So bring on that beautiful transplant. Let's do it with a smile!