Just call me Pollyanna
I suppose I should begin this entry with some clever look back to 2011, or perhaps some insight into all that I've learned about myself in the last year. Or maybe some new resolutions. But that all feels so trite. So, here it is... Jan. 1, 2012... and I do feel that inherent sense of optimism that comes with the new year. But I also feel fear, dread, peace, and hope. It's an interesting blend of emotions.
The last few weeks have brought some big changes in my medical journey. I've switched doctors and am taking all of my care to UT Southwestern now. Mike and I are slowly but surely digging our way out of the medical bill mountain, and my journey continues.
Last week, I had my long-awaited meeting with the nutritionist at UTSW. It was WONDERFUL. There were a couple of things that became very clear: 1) The first nutritionist I saw almost a year ago was soooo off-base. She had told me to only eat 15 mg. of protein a day, which is darn near impossible. Turns out, I need to eat more like 50-60 mg. of protein a day. Whew! 2) This food stuff is overwhelming. Not only do I need to track calories and fat, but also protein, potassium, phosphorus, and sodium. At the conclusion of our 2 hour session, there were several things I realized. Dining out is nearly impossible. For example, at Chili's, their white rice - a substance that naturally contains NO sodium - ends up with over 300 mg. of sodium by the time it's on the table. Wowsers!!! So it's meals at home from now on! :) Also, processed foods - even something simple like frozen biscuits or waffles - are packed full of phosphorus as a preservative. So those are off the table too. The other thing that makes this all so challenging is that food labels are not required to list potassium or phosphorus, so sometimes it truly is a shot in the dark.
We're trying to keep things simple by going back to VERY basic meals - whole meats like chicken and pork - with veggies and simple grains. Things get a bit more complicated with the phosphorus, which limits whole grains, dairy, and cheese. But considering that my phosphorus was almost double the highest end of the normal range on my last set of labwork, I'm diligently taking my phosphate binders before each meal and avoiding any high-phosphorus foods. So, goodbye diet coke, milk, cheese, and biscuits. We've had a good run!
On top of all these wackadoo diet restrictions, I also need to be losing weight - a LOT of weight. It's not coming off as easily any more because I'm feeling overall much better. That's a good thing, of course, but it also means increased appetite, which is another challenge. Mike and I have been working out much more regularly, and we've found a trainer that we love at our gym. She had leukemia when she was a teenager, so she can relate to some of my issues, but she also pushes me to get stronger and keep moving, which is good.
So after considering all of my options - diet, surgery, etc. - My nutritionist and I agreed that the best option for me would probably be medical weight loss. Basically, this is my issue. I'm a few weeks away from starting peritoneal dialysis. The dialysis solution is dextrose based, and I'll be absorbing about 300-500 calories from that each night. So, I need to subtract those calories from my "intake" to maintain my weight and avoid gaining. On top of that, I need to subtract another 500 calories a day to lose 1 pound a week. So, on a 1500 calorie diet, that leaves me with about 500 calories to eat per day. As I'm sure you can imagine, that's TOUGH, especially since they are wanting me to eat 5 times a day. Enter medical weight loss. This medically-supervised weight loss plan is described on the UTSW website as follows: The most rigorous version of the liquid protein diet contains about 400-800 calories per day and consists of specially-developed protein products. The powder product for shakes dissolves in water, milk, tea, yogurt and similar liquids. Soups and protein bars are also available. No other food is consumed initially, although after a certain period, some vegetables and other foods can be added.
Mmmm..... sounds yummy, right? Believe it or not, I'm actually excited about this. It is SO overwhelming at times to track all of those aspects of one's diet, espcecially when the values aren't listed on food labels. So the fact that I'd be able to just "follow" the plan and not have to think too much about what to do pick actually sounds very freeing. In an ideal world, that would help me drop my 65 pounds quickly so I can get myself a brand-spanking new kidney, and then things will return to quasi-normal. Anyway, I should be moving forward with a referral to that office for the liquid diet in the next few weeks.
So, in other BIG news. I finally got my PD catheter placed last Thursday. Wow...what a day.
On Wednesday afternoon, I got a call from the hospital telling me to report for surgery the following day at 9am. My surgery was scheduled for 11am. Now, as a quick reminder - last time I was scheduled for surgery before Thanksgiving, no one called me. The surgeon's nurse called me the night before and told me that my surgery was cancelled, and then she called me again at 8am on the day of my surgery and said it was back on. Mike and I got there, I was ready, and then they sent me home, telling me it was cancelled again. So, I was quite relieved that they called me this time and told me when to be there.
Thursday morning, my mom took me down to UTSW, and we walked in a 9am on the dot. The nurse - huffing and exasperated - said, "Oh thank goodness you're here! We've been waiting on you! You were supposed to be here at 7:30! Your surgery is at 9:30!" Needless to say, my mom and I were dumbfounded. No one had bothered to call to tell me that my surgery had been bumped up. After being chastised, I went to my room and got ready for surgery, laying in bed and napping while a "not-so-friendly" nurse twittered around the room giving me instructions. My surgeons came in to talk with me, and the nurse rolled her eyes and said, "I'm so sorry we're running behind doctor, but she strolled in late at 9:30, and I've been trying to get everything done as quickly as possible." At that moment, my mom had stepped out to get some ice water, and that was probably a good thing! I was ticked! I literally came off the bed and clarified, telling her we got here at 9 as we had been told, and that no one had called us. The nurse huffed and walked out, and my surgeon just laughed. What a great way to start the procedure! :)
They explained the procedure to me, and we began "the wait". 9:30 am came and went... 10:30.... 11:30... 12:30.... Finally, I think around 1pm, they came to get my IV started. The next thing I remember was being wheeled into the operating room and thinking about how awful it would be if I was stuck in some weird semi-conscious state like that movie "Awake". Once I was asleep, I had some of the craziest dreams! I don't rememeber exactly what they were about, but I know I awoke with a start, either from the dreams or from the breathing tube being pulled out of my throat. All I remember about recovery is nausea... and pain. I know laparoscopic surgery isn't supposed to be nearly as painful as traditional. All I can say is that if this is the less painful version, I sure do hope I never have to have the traditional! I realized later that the pain was not as much from the actual incisions or catheter, but more from the remaining CO2 in my abdomen. All I can really think of to descibe it is pressure. There was just a big feeling of pressure over my entire abdomen.
The medication also made me very nauseous, so I'm sure I was a delight to be around at that moment. ;) Thank goodness my momma loves me and has seen it all! Once we got home, I went to bed and slept like I haven't slept in ages. Over the next couple of days, I truly laid around the house, napping when I wanted to and resting. Each day I woke up feeling a little better than the day before. I'm still not back to my old self, but I'm getting there.
Tonight I had to remove the dressings from surgery, leaving the waterproof dressing over my catheter alone. That's when I was finally able to really see what they did. I have four small incisions, plus the catether. The primary one went through my belly button (so weird!), and the others are scattered around the same area. My catheter is tucked up into a dressing on the left of my belly button. It feels rather petite, which is nice, but I haven't gotten a good look at it yet. This whole experience is so strange. The catheter feels like a little pinch every now and then, but the other incisions don't really hurt.
I don't know who came up with this zany idea to do dialysis through the belly, but I'm intrigued by it. So now that this part is finished, I have a follow-up appointment with the surgeon on Tuesday afternoon. She'll change my catheter dressing and make sure there's no infection. After that, I'll be making an appointment with the dialysis center connected with UTSW. I will attend a series of trainings/classes over the next 3-4 weeks on how to fill/drain my peritonem, take care of the catheter, and administer dialysis at home. After that, my supplies will be sent to my house, and I should begin nightly dialysis in another 4-5 weeks. By then, the catheter should be fully healed. My creatinine levels have risen to about 6.3, so it's good that we've moved forward. I'm well into stage V kidney failure. Thankfully, PD seems to be more effective at restoring some kidney function than hemodialysis, so I am hopeful that my numbers will improve soon. Right now I feel pretty good, but I've heard that many people don't realize how badly they feel until they start dialysis. I suppose I will soon find out!
I realize that this dialysis treatment is going to be life-changing. The clinic sent me home with a cheesy 1970s video of people talking about how they live well on dialysis - singing kareoke in bars and traveling. While that's true, this is a life-changing event. I will most likely need to do about 9 hours of dialysis a night, which means that I will need to be home every day by 8-9 pm so I can finish treatment and be up in time for work. While that doesn't seem like a problem at all, on those nights where you want to go see a late movie or sit and chat with some friends after dinner, I will now need to watch the clock. Vacations will involve calling ahead and ordering supplies to be sent to the hotel so I can adminster dialysis while I'm away. All of it is manageable, and I'm so blessed to have dialysis as an option, but I do dream of a day when I can get this tube removed from my belly and live my life without carting around buckets of medications and dialysis supplies.
I read today that there are 90,000 people waiting for kidneys right now. This year my father was blessed with a double lung transplant. My grandmother is fighting congestive heart failure. And I need a new kidney. So, if you'll pardon the PSA, please consider becoming an organ donor. I've been a donor for years, but now I'm on the opposite end... hoping one day to receive an organ.
My, my... how things change.
So, now that 2011 - a year that beat up me and everyone I care about - has made its way into the past, I'm hopeful for a brighter 2012. I look forward to a day when - as an old woman - I can look at Mike, wink and say "Do you remember 2011? Man... that year was terrible. But 2012? Now that's one to remember!" Just call me Pollyanna... my eternal optimism shall not fade.
The last few weeks have brought some big changes in my medical journey. I've switched doctors and am taking all of my care to UT Southwestern now. Mike and I are slowly but surely digging our way out of the medical bill mountain, and my journey continues.
Last week, I had my long-awaited meeting with the nutritionist at UTSW. It was WONDERFUL. There were a couple of things that became very clear: 1) The first nutritionist I saw almost a year ago was soooo off-base. She had told me to only eat 15 mg. of protein a day, which is darn near impossible. Turns out, I need to eat more like 50-60 mg. of protein a day. Whew! 2) This food stuff is overwhelming. Not only do I need to track calories and fat, but also protein, potassium, phosphorus, and sodium. At the conclusion of our 2 hour session, there were several things I realized. Dining out is nearly impossible. For example, at Chili's, their white rice - a substance that naturally contains NO sodium - ends up with over 300 mg. of sodium by the time it's on the table. Wowsers!!! So it's meals at home from now on! :) Also, processed foods - even something simple like frozen biscuits or waffles - are packed full of phosphorus as a preservative. So those are off the table too. The other thing that makes this all so challenging is that food labels are not required to list potassium or phosphorus, so sometimes it truly is a shot in the dark.
We're trying to keep things simple by going back to VERY basic meals - whole meats like chicken and pork - with veggies and simple grains. Things get a bit more complicated with the phosphorus, which limits whole grains, dairy, and cheese. But considering that my phosphorus was almost double the highest end of the normal range on my last set of labwork, I'm diligently taking my phosphate binders before each meal and avoiding any high-phosphorus foods. So, goodbye diet coke, milk, cheese, and biscuits. We've had a good run!
On top of all these wackadoo diet restrictions, I also need to be losing weight - a LOT of weight. It's not coming off as easily any more because I'm feeling overall much better. That's a good thing, of course, but it also means increased appetite, which is another challenge. Mike and I have been working out much more regularly, and we've found a trainer that we love at our gym. She had leukemia when she was a teenager, so she can relate to some of my issues, but she also pushes me to get stronger and keep moving, which is good.
So after considering all of my options - diet, surgery, etc. - My nutritionist and I agreed that the best option for me would probably be medical weight loss. Basically, this is my issue. I'm a few weeks away from starting peritoneal dialysis. The dialysis solution is dextrose based, and I'll be absorbing about 300-500 calories from that each night. So, I need to subtract those calories from my "intake" to maintain my weight and avoid gaining. On top of that, I need to subtract another 500 calories a day to lose 1 pound a week. So, on a 1500 calorie diet, that leaves me with about 500 calories to eat per day. As I'm sure you can imagine, that's TOUGH, especially since they are wanting me to eat 5 times a day. Enter medical weight loss. This medically-supervised weight loss plan is described on the UTSW website as follows: The most rigorous version of the liquid protein diet contains about 400-800 calories per day and consists of specially-developed protein products. The powder product for shakes dissolves in water, milk, tea, yogurt and similar liquids. Soups and protein bars are also available. No other food is consumed initially, although after a certain period, some vegetables and other foods can be added.
Mmmm..... sounds yummy, right? Believe it or not, I'm actually excited about this. It is SO overwhelming at times to track all of those aspects of one's diet, espcecially when the values aren't listed on food labels. So the fact that I'd be able to just "follow" the plan and not have to think too much about what to do pick actually sounds very freeing. In an ideal world, that would help me drop my 65 pounds quickly so I can get myself a brand-spanking new kidney, and then things will return to quasi-normal. Anyway, I should be moving forward with a referral to that office for the liquid diet in the next few weeks.
So, in other BIG news. I finally got my PD catheter placed last Thursday. Wow...what a day.
On Wednesday afternoon, I got a call from the hospital telling me to report for surgery the following day at 9am. My surgery was scheduled for 11am. Now, as a quick reminder - last time I was scheduled for surgery before Thanksgiving, no one called me. The surgeon's nurse called me the night before and told me that my surgery was cancelled, and then she called me again at 8am on the day of my surgery and said it was back on. Mike and I got there, I was ready, and then they sent me home, telling me it was cancelled again. So, I was quite relieved that they called me this time and told me when to be there.
Thursday morning, my mom took me down to UTSW, and we walked in a 9am on the dot. The nurse - huffing and exasperated - said, "Oh thank goodness you're here! We've been waiting on you! You were supposed to be here at 7:30! Your surgery is at 9:30!" Needless to say, my mom and I were dumbfounded. No one had bothered to call to tell me that my surgery had been bumped up. After being chastised, I went to my room and got ready for surgery, laying in bed and napping while a "not-so-friendly" nurse twittered around the room giving me instructions. My surgeons came in to talk with me, and the nurse rolled her eyes and said, "I'm so sorry we're running behind doctor, but she strolled in late at 9:30, and I've been trying to get everything done as quickly as possible." At that moment, my mom had stepped out to get some ice water, and that was probably a good thing! I was ticked! I literally came off the bed and clarified, telling her we got here at 9 as we had been told, and that no one had called us. The nurse huffed and walked out, and my surgeon just laughed. What a great way to start the procedure! :)
They explained the procedure to me, and we began "the wait". 9:30 am came and went... 10:30.... 11:30... 12:30.... Finally, I think around 1pm, they came to get my IV started. The next thing I remember was being wheeled into the operating room and thinking about how awful it would be if I was stuck in some weird semi-conscious state like that movie "Awake". Once I was asleep, I had some of the craziest dreams! I don't rememeber exactly what they were about, but I know I awoke with a start, either from the dreams or from the breathing tube being pulled out of my throat. All I remember about recovery is nausea... and pain. I know laparoscopic surgery isn't supposed to be nearly as painful as traditional. All I can say is that if this is the less painful version, I sure do hope I never have to have the traditional! I realized later that the pain was not as much from the actual incisions or catheter, but more from the remaining CO2 in my abdomen. All I can really think of to descibe it is pressure. There was just a big feeling of pressure over my entire abdomen.
The medication also made me very nauseous, so I'm sure I was a delight to be around at that moment. ;) Thank goodness my momma loves me and has seen it all! Once we got home, I went to bed and slept like I haven't slept in ages. Over the next couple of days, I truly laid around the house, napping when I wanted to and resting. Each day I woke up feeling a little better than the day before. I'm still not back to my old self, but I'm getting there.
Tonight I had to remove the dressings from surgery, leaving the waterproof dressing over my catheter alone. That's when I was finally able to really see what they did. I have four small incisions, plus the catether. The primary one went through my belly button (so weird!), and the others are scattered around the same area. My catheter is tucked up into a dressing on the left of my belly button. It feels rather petite, which is nice, but I haven't gotten a good look at it yet. This whole experience is so strange. The catheter feels like a little pinch every now and then, but the other incisions don't really hurt.
I don't know who came up with this zany idea to do dialysis through the belly, but I'm intrigued by it. So now that this part is finished, I have a follow-up appointment with the surgeon on Tuesday afternoon. She'll change my catheter dressing and make sure there's no infection. After that, I'll be making an appointment with the dialysis center connected with UTSW. I will attend a series of trainings/classes over the next 3-4 weeks on how to fill/drain my peritonem, take care of the catheter, and administer dialysis at home. After that, my supplies will be sent to my house, and I should begin nightly dialysis in another 4-5 weeks. By then, the catheter should be fully healed. My creatinine levels have risen to about 6.3, so it's good that we've moved forward. I'm well into stage V kidney failure. Thankfully, PD seems to be more effective at restoring some kidney function than hemodialysis, so I am hopeful that my numbers will improve soon. Right now I feel pretty good, but I've heard that many people don't realize how badly they feel until they start dialysis. I suppose I will soon find out!
I realize that this dialysis treatment is going to be life-changing. The clinic sent me home with a cheesy 1970s video of people talking about how they live well on dialysis - singing kareoke in bars and traveling. While that's true, this is a life-changing event. I will most likely need to do about 9 hours of dialysis a night, which means that I will need to be home every day by 8-9 pm so I can finish treatment and be up in time for work. While that doesn't seem like a problem at all, on those nights where you want to go see a late movie or sit and chat with some friends after dinner, I will now need to watch the clock. Vacations will involve calling ahead and ordering supplies to be sent to the hotel so I can adminster dialysis while I'm away. All of it is manageable, and I'm so blessed to have dialysis as an option, but I do dream of a day when I can get this tube removed from my belly and live my life without carting around buckets of medications and dialysis supplies.
I read today that there are 90,000 people waiting for kidneys right now. This year my father was blessed with a double lung transplant. My grandmother is fighting congestive heart failure. And I need a new kidney. So, if you'll pardon the PSA, please consider becoming an organ donor. I've been a donor for years, but now I'm on the opposite end... hoping one day to receive an organ.
My, my... how things change.
So, now that 2011 - a year that beat up me and everyone I care about - has made its way into the past, I'm hopeful for a brighter 2012. I look forward to a day when - as an old woman - I can look at Mike, wink and say "Do you remember 2011? Man... that year was terrible. But 2012? Now that's one to remember!" Just call me Pollyanna... my eternal optimism shall not fade.
WOW! Your story just continues to amaze, you are truly an inspiration to me. I am already an organ donor and I would surely donate one of my kidneys now if we were a match. I am proud to have you in our family, you and Mike are a perfect match.
ReplyDeleteLove you both, Aunt Patty
You are strong and optimistic and that's what it takes to get through matters like these. If you ever need any helpful hints about liquid diets, I've been there, done that as well. I'm praying that 2012 brings that kidney you are in need of. Stay strong Pollyanna! :)
ReplyDeleteLove to you and your family, Alison
Thank you so much for your comment, Aunt Patty! I was just telling Mike the other day how truly blessed I am. Not only did I get a great hubby, but he came with an amazing family! I'm so, so glad to have you all in my life! Thank you!
ReplyDeleteLove you,
Jenn
Alison, thank you SO much for your kind comment! I may be picking your brain about the liquid diet soon! :) Thank you!!!
ReplyDelete