Ready or Not...
Medically speaking, things have escalated with my situation pretty recently, so I figured it was time for another update. There are three main areas of "focus" right now. It seems like just as I get one thing under control, another issue pops up demanding my attention. I feel like I'm playing that game at Putt-Putt where you bash the plastic alligators on the head. No matter how many times I bop them with the big paddle, they just keep coming back!
So alligator one is still my kidneys... On Thursday of last week, I had a training session at the DaVita dialysis clinic for UT Southwestern. The session was very informative. I met with a nurse who explained the whole peritoneal dialysis process to me - including the placement of the catheter, training, and cleaning. I also met with a social worker about the financial and emotional aspects of dialysis. I was so grateful to be able to tell her about my amazing support system of friends and family. Then, this past Monday afternoon, a nurse from the clinic came to my home to make sure it is suitable for dialysis. It was an intersesting experience because she kept talking about how I had "SO MUCH" residual kidney function and that I wouldn't need much dialysis. Usually, it's pretty doom-and-gloom when it comes to my kidney function, so it was a relief to hear that I'm not so bad after all. Of course, considering that most people come to UTSW when they are so far down the line that they are highly toxic and have 0 function, I guess my 10-15% does look pretty good!
The nurse helped explain how things will work for my particular situation. The first step is this Friday, when I will attend a short class at the Kidney and Liver Transplant Clinic at UTSW. Once that is finished, Dr. Saxena at UTSW will arrange for me to have a catheter placed. That should be a one-day outpatient surgery, and I will have it done at UTSW. The catheter is like a flexible straw that will go through my abdomen and come out below my belly button. I will have to be very careful with it and will have to work to keep it very clean to prevent infection. I'm not allowed to swim, take baths, or get in hot tubs. I can shower, of course, but I have to clean my shower head weekly with disinfectant and keep my back to the stream to prevent water from hitting the catheter site directly. After the catheter is placed, I will attend a series of training sessions at the dialysis clinic to teach me how to care for the catheter and administer treatments. There's even an entire session on proper handwashing! Once I'm fully trained, the clinic will order my first month's supplies. Those will be delivered directly to my house, along with a cycler machine. For about 9 hours each night, I'll hook myself up to the cycler. The social worker suggested that I get a cart with wheels to store the bags, supplies, and the cycler so I can move around the house. The cycler is actually pretty cool. I'll hook up however many bags of solution I need (probably 2-3). The machine will then cyphon one bag of solution into a warming bag, which will heat the solution to my body temperature. That solution will then be cyphoned into my abdomen. My peritoneal lining will act as a filter, drawing extra fluid, salt, and toxins from my blood and into the solution. Once the used solution has absorbed as much as it needs to (the dwell time), it will then be cyphoned into another empty bag for disposal. Another alternative would be for me to run the "drain line" directly to the shower or bathtub so the used solution will immediately be discarded. Then the process will repeat itself again. Most of this will happen while I'm sleeping, but since it can be hard to get a full 9 hours of sleep at night, having the machine on a cart will allow me to move around the house or watch TV with Mike before I head to bed. If I go out of town, I just let the dialysis clinic know a couple of weeks in advance, and they have all of the necessary materials ordered and delivered to my hotel room or the place where I'm staying. I just take my cycler with me on the plane.
Now, I'm not delusional. I know that dialysis is going to be a HUGE life change. As my students would say, it'll suck. But my hope is that it'll "suck less" than hemodialysis. People on hemodialysis often complain of being exhausted after treatment. I've heard that PD patients do not have as many issues with the fatigue or illness factors as hemodialysis patients. Also, it seems like this home therapy will be less invasive and will allow me to continue my life with fewer interruptions. Because my kidneys are still "so good" (HA!), according to my nurse, I also won't have to have fluid in my belly during the day, which is a relief. So the only dialysis I will have to do, at least for now, will be at home in the evenings. Hopefully, I'll be able to move on to transplant soon and avoid having dialysis as a long-term situation. As my doctor says, this is a "bridge" to get me from my current situation to transplant.
Alligator two is my eyes... Yesterday I had cataract surgery on my right eye. Again, these cataracts are a result of my steroid medications. I am slowly adjusting to the new vision, since my right eye is now for distance only, and my left eye (where I still wear a contact) is for distance and close reading. Reading and grading papers has been interesting. Until I can get the left eye done, I'll have to make due with the differences, which are really only bothersome during long spans of reading or writing. The surgery itself was very easy. The nurse was great and got the IV of "happy juice" in quickly (one stick!), which was a HUGE relief for me. The speculum was pressing against my eye during the procedure, so it took longer than normal to complete the adjustment and placement, but it wasn't painful. The whole experience was very surreal, though. I could see the lens implant and the tools in my eye, along with a kaleidoscope of colors and images. For someone who has never touched an illegal substance, it was pretty trippy! Today's post-op visit went well, and my doc is going to see me again in 2 weeks to make sure that the residual "ghosting" and blurriness in my right eye has cleared. In the meantime, I have several VERY expensive eye drops to use that will help with healing. I anticipate getting my left eye done during winter break so I can avoid having to take more time off of work, and the cataract in my left eye needs to "grow more" before we can have it removed.
Alligator three is my hormones... Today I met again with my OB/GYN. At my last visit, he confirmed that I have medically-induced menopause (at the ripe ol' age of 33!). I've been having crazy hot flashes and waking up in the middle of the night completely drenched. Thankfully, I haven't gotten too crazy or mean yet, and now that the weather is cooling off, the flashes haven't been so bad. But of course, with my situation, nothing is ever too simple. Today my doc did an ultrasound to make sure I didn't have any signs of cancer. It seems so ironic to me that being on chemo actually INCREASES your risks for certain cancers. Seems a bit counterintuitive.... Anyway, I'll be starting hormone replacement therapy to help with the symptoms. I'll be doing a blend of hormones (both estrogen and progesterone) using a topical patch. My doc conferred with several members of my "medical team" to discuss side effects, risks, and the impact on my kidneys. This was determined to be my best option at this time since it will bypass any organ involvement with my kidneys or liver. I'm looking forward to a better night's sleep and a more even and consistent temperature range!
So far, the rest of the alligators are staying hidden. Now that I've shaved off my hair, I don't have to deal with it falling out every morning, and it's starting to grow again. I'm curious to see what it'll look like, since most people have a change in hair color or texture after medical hair loss. My allergic reaction to the Dapsone (painful blisters all over my body) has started to clear up. I'm getting good rest, and we're working on slowing chipping away at the medical bills. It's starting to feel like I'm digging myself out of this hole, but I sure would love a week with no appointments. It's amazing how - just 3 months ago - I was worried about being able to make it through a whole work day. Now, I look forward to the relief of days where I "only" have work... no appointments, meetings, or errands. It just goes to show how much attitude is just a reflection of your perspective!
We have our mini fall break coming up this weekend, so Friday is parent/teacher conference day, which will allow me time to get caught up on grading. Monday we are out of school, so I hope to relax and enjoy that day watching movies, reading and napping. :) I'm learning to savor those little sweet moments, like an afternoon of good music or a hearty laugh at a great movie. I keep thinking of that line from Hanna... "adapt or die". So I'm adjusting and changing to my new life.... trying to move forward... and keeping my focus on the future.
So alligator one is still my kidneys... On Thursday of last week, I had a training session at the DaVita dialysis clinic for UT Southwestern. The session was very informative. I met with a nurse who explained the whole peritoneal dialysis process to me - including the placement of the catheter, training, and cleaning. I also met with a social worker about the financial and emotional aspects of dialysis. I was so grateful to be able to tell her about my amazing support system of friends and family. Then, this past Monday afternoon, a nurse from the clinic came to my home to make sure it is suitable for dialysis. It was an intersesting experience because she kept talking about how I had "SO MUCH" residual kidney function and that I wouldn't need much dialysis. Usually, it's pretty doom-and-gloom when it comes to my kidney function, so it was a relief to hear that I'm not so bad after all. Of course, considering that most people come to UTSW when they are so far down the line that they are highly toxic and have 0 function, I guess my 10-15% does look pretty good!
The nurse helped explain how things will work for my particular situation. The first step is this Friday, when I will attend a short class at the Kidney and Liver Transplant Clinic at UTSW. Once that is finished, Dr. Saxena at UTSW will arrange for me to have a catheter placed. That should be a one-day outpatient surgery, and I will have it done at UTSW. The catheter is like a flexible straw that will go through my abdomen and come out below my belly button. I will have to be very careful with it and will have to work to keep it very clean to prevent infection. I'm not allowed to swim, take baths, or get in hot tubs. I can shower, of course, but I have to clean my shower head weekly with disinfectant and keep my back to the stream to prevent water from hitting the catheter site directly. After the catheter is placed, I will attend a series of training sessions at the dialysis clinic to teach me how to care for the catheter and administer treatments. There's even an entire session on proper handwashing! Once I'm fully trained, the clinic will order my first month's supplies. Those will be delivered directly to my house, along with a cycler machine. For about 9 hours each night, I'll hook myself up to the cycler. The social worker suggested that I get a cart with wheels to store the bags, supplies, and the cycler so I can move around the house. The cycler is actually pretty cool. I'll hook up however many bags of solution I need (probably 2-3). The machine will then cyphon one bag of solution into a warming bag, which will heat the solution to my body temperature. That solution will then be cyphoned into my abdomen. My peritoneal lining will act as a filter, drawing extra fluid, salt, and toxins from my blood and into the solution. Once the used solution has absorbed as much as it needs to (the dwell time), it will then be cyphoned into another empty bag for disposal. Another alternative would be for me to run the "drain line" directly to the shower or bathtub so the used solution will immediately be discarded. Then the process will repeat itself again. Most of this will happen while I'm sleeping, but since it can be hard to get a full 9 hours of sleep at night, having the machine on a cart will allow me to move around the house or watch TV with Mike before I head to bed. If I go out of town, I just let the dialysis clinic know a couple of weeks in advance, and they have all of the necessary materials ordered and delivered to my hotel room or the place where I'm staying. I just take my cycler with me on the plane.
Now, I'm not delusional. I know that dialysis is going to be a HUGE life change. As my students would say, it'll suck. But my hope is that it'll "suck less" than hemodialysis. People on hemodialysis often complain of being exhausted after treatment. I've heard that PD patients do not have as many issues with the fatigue or illness factors as hemodialysis patients. Also, it seems like this home therapy will be less invasive and will allow me to continue my life with fewer interruptions. Because my kidneys are still "so good" (HA!), according to my nurse, I also won't have to have fluid in my belly during the day, which is a relief. So the only dialysis I will have to do, at least for now, will be at home in the evenings. Hopefully, I'll be able to move on to transplant soon and avoid having dialysis as a long-term situation. As my doctor says, this is a "bridge" to get me from my current situation to transplant.
Alligator two is my eyes... Yesterday I had cataract surgery on my right eye. Again, these cataracts are a result of my steroid medications. I am slowly adjusting to the new vision, since my right eye is now for distance only, and my left eye (where I still wear a contact) is for distance and close reading. Reading and grading papers has been interesting. Until I can get the left eye done, I'll have to make due with the differences, which are really only bothersome during long spans of reading or writing. The surgery itself was very easy. The nurse was great and got the IV of "happy juice" in quickly (one stick!), which was a HUGE relief for me. The speculum was pressing against my eye during the procedure, so it took longer than normal to complete the adjustment and placement, but it wasn't painful. The whole experience was very surreal, though. I could see the lens implant and the tools in my eye, along with a kaleidoscope of colors and images. For someone who has never touched an illegal substance, it was pretty trippy! Today's post-op visit went well, and my doc is going to see me again in 2 weeks to make sure that the residual "ghosting" and blurriness in my right eye has cleared. In the meantime, I have several VERY expensive eye drops to use that will help with healing. I anticipate getting my left eye done during winter break so I can avoid having to take more time off of work, and the cataract in my left eye needs to "grow more" before we can have it removed.
Alligator three is my hormones... Today I met again with my OB/GYN. At my last visit, he confirmed that I have medically-induced menopause (at the ripe ol' age of 33!). I've been having crazy hot flashes and waking up in the middle of the night completely drenched. Thankfully, I haven't gotten too crazy or mean yet, and now that the weather is cooling off, the flashes haven't been so bad. But of course, with my situation, nothing is ever too simple. Today my doc did an ultrasound to make sure I didn't have any signs of cancer. It seems so ironic to me that being on chemo actually INCREASES your risks for certain cancers. Seems a bit counterintuitive.... Anyway, I'll be starting hormone replacement therapy to help with the symptoms. I'll be doing a blend of hormones (both estrogen and progesterone) using a topical patch. My doc conferred with several members of my "medical team" to discuss side effects, risks, and the impact on my kidneys. This was determined to be my best option at this time since it will bypass any organ involvement with my kidneys or liver. I'm looking forward to a better night's sleep and a more even and consistent temperature range!
So far, the rest of the alligators are staying hidden. Now that I've shaved off my hair, I don't have to deal with it falling out every morning, and it's starting to grow again. I'm curious to see what it'll look like, since most people have a change in hair color or texture after medical hair loss. My allergic reaction to the Dapsone (painful blisters all over my body) has started to clear up. I'm getting good rest, and we're working on slowing chipping away at the medical bills. It's starting to feel like I'm digging myself out of this hole, but I sure would love a week with no appointments. It's amazing how - just 3 months ago - I was worried about being able to make it through a whole work day. Now, I look forward to the relief of days where I "only" have work... no appointments, meetings, or errands. It just goes to show how much attitude is just a reflection of your perspective!
We have our mini fall break coming up this weekend, so Friday is parent/teacher conference day, which will allow me time to get caught up on grading. Monday we are out of school, so I hope to relax and enjoy that day watching movies, reading and napping. :) I'm learning to savor those little sweet moments, like an afternoon of good music or a hearty laugh at a great movie. I keep thinking of that line from Hanna... "adapt or die". So I'm adjusting and changing to my new life.... trying to move forward... and keeping my focus on the future.
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