Making the Switch
These last few weeks have been pretty hectic with doctors' appointments, so it's probably time for another update. I'm in the process of transferring my care to UT Southwestern, so I've had a lot of appointments recently and will have several more in the near future.
Regarding my eyes, I'm healing nicely after the cataract surgery, and I see my ophthalmologist again next week for another follow-up. I'm hoping to schedule the left eye surgery for winter break to avoid having to take more time off of work.
I also met with a vascular surgeon at UTSW for evaluation for a PD catheter. I'll be having that done in 2 weeks. It should be a one-day laparoscopic procedure, and I should be able to go home from the hospital the same day. However, I will probably be sore for several days afterwards, so I'm taking a couple of days off of work to allow time to recoup. After the catheter is inserted, I'll be going to a 4-5 hour training and clinic session at the UTSW dialysis center where they will teach me how to clean and use the catheter, making sure I'm able to take care of it over Thanksgiving break.
Within the next couple of months, I'll have frequent appointments in Irving at the dialysis center to receive training and evaluation. Because they will be checking my blood counts regularly, I will not need to see Dr. C in Carrollton any more. At first I was concerned about the change, knowing that I would be starting from square one with the people at UTSW and realizing that I would have to do a LOT more driving, which is a challenge with my work schedule. However, after my last appointment with Dr. C, I feel much better about switching to UTSW. My nephrologist at UT, Dr. Saxena, is the head of the PD dialysis clinic and part of the transplant team. Also, the surgeon who is doing my catheter procedure at UTSW is one of the transplant surgeons, so it's good that they will all be familiar with my case and history.
Today I also received a call from my transplant coordinator to let me know that I have been approved financially for a transplant, meaning that my insurance has been verified and so forth. At this point, I will need to meet with the transplant surgeon (Dr. H, who is doing my catheter procedure) and the nephrologist (Dr. Saxena) to continue moving forward. I will also meet with their dietician on the 23rd to establish a diet plan that will help me reduce my weight while addressing the somewhat odd and specific needs of a dialysis diet (low potassium, low phosphorus, and low sodium). The care at UTSW is truly comprehensive - a team approach - and everyone talks to each other, which is SO nice after having to "coordinate efforts" between doctors myself.
When I saw Dr. C last week, he told me that choosing peritoneal dialysis meant that I was also choosing to get gastric bypass surgery. This surprised me because he made it seem like it was such a definite next step. In fact, he encouraged me to see if the surgeon doing my catheter could do bariatric surgery "while she was in there". It was very alarming and made me very concerned. I really like Dr. C, and he has taken great care of me, but I have found that he often feels compelled to rush into the "next step" quickly, like with my catheter surgery. The folks at UTSW have a systematic approach and process that helps prevent unnecessary procedures and appointments. But Dr. C's suggestion of weight loss surgery, which - to me - seems like a rather drastic approach, caught me off guard.
Here's my theory on weight loss surgery: I know that it has worked for many people, and I would be open to it as an option if needed, especially considering that time is of the essence, and the faster I can lose weight to qualify for transplant, the faster I can get off of dialysis. However, I also know that my body has been put through the ringer lately. I have had awful infections, and I have several more procedures/surgeries coming up soon. Even the surgeon at UTSW said she had concerns about doing both procedures so close together (the catheter and gastric bypass) because they each need a good bit of recovery time.
So to help clear up my confusion (and anxiety), I contacted Dr. Saxena. With such extensive experience in PD, I knew that he would be able to tell me if it was possible to lose weight naturally through diet and exercise on PD. He called me back personally (LOVE that!) and told me about many patients that he has on PD who have lost considerable amounts of weight - some naturally and some through surgery - but all while on PD. He offered to arrange for me to meet with some of them so I could "pick their brains" and hear about their experiences. He also clarified that this decision doesn't have to be made right now. In fact, his suggestion was for me to work with the dietician and get through the catheter procedure first. Then, if I find that the weight loss process isn't advancing as quickly as I'd like, then I could consider weight loss surgery at a later date. I truly breathed a sigh of relief.
This whole thing has been so much so fast. When I look back, I realize that it hasn't even been a year since my diagnosis. Last November we were still in the dark, and my kidney function was still relatively good. In the last 10 months, I've done chemo, fought some REALLY nasty infections, spent WAY too much time in the hospital, had my kidneys decimated, lost my hair, dropped 40 pounds, and had surgery on my eyes. I've gotten so weak that I couldn't step up on a curb, and slowly worked to rebuild my muscles so I could climb multiple flights of stairs. It has been a roller coaster of a ride. Now I have at least two more surgeries "on the books" and who knows how many hours of trainings and appointments ahead of me. I just don't know that I could deal with not being able to eat solid food on top of all of that.
I also love that Dr. Saxena presents OPTIONS to me in a more laid-back approach. Like I told Mike, I have the market on high-stress anxiety cornered. I don't need a doctor who causes me to freak out... I need one to help me know that everything is going to be OK who can calm me down when I become concerned. I am so grateful that I'm able to switch my care to UTSW so I know that I'm receiving the best care possible. They have worked wonders with my father, and I have high hopes that I will have a similar fate with a successful transplant in the near future.
Mike and I have rejoined Cooper Aerobics Center, and I'm excited to try their Zumba classes and meet with their trainers. Between a strong fitness plan and the help of a dietician, I'm hopeful that my transition into dialysis will be as smooth as possible. I'm taking things one day at a time, delighting in the small things (like the hair sprouting back on my head!), and slowly chipping away at all of the different little issues I have going on right now. It's hard to believe that my life has taken such a drastic turn, and sometimes I get frustrated and resentful that so much of Mike's and my financial and emotional resources are going to fighting this illness, but then I also remember how grateful I am to be alive right now - able to work - able to see friends - able to travel.... There was a time when a diagnosis for Wegener's granulomatosis meant certain death in 6-8 months. I'm 10 months past diagnosis, still fighting, and able to live a relatively normal lifestyle. Each and every day is a true blessing.
The fact is I don't know how many years I have left. I hope it's many, but I don't know for sure.... None of us do! I do find myself thinking more about the end of life, though. While it may sound morbid, I have started thinking about how I want to be remembered and what I'd want in terms of an end-of-life ceremony. I know that I don't want a stuffy funeral with everyone dressed up in fancy clothes. I want a PARTY with music, dancing, and laughter! I'd like to be cremated and have my ashes spread someplace beautiful - like an ocean - not buried in a cemetery among people I don't know. After all, I think one's mark on the world is left on the people we impact, rather than a plot of dirt with my name in stone. To me, that's my living legacy. The students I teach, the friends I love, the lives I touch - those are the ways that my memory can be honored forever. As of right now, the most wonderful vacation I've ever had was to Rhode Island with Mike a couple of years ago, so I'd want my ashes to be spread there. And while I know it sounds odd to think about one's own death, that helps me stay focused on how I want to live my life. It helps me remember to take things more lightly and focus on the positive aspects of things. I don't ever want to be remembered as a person of negativity, cynicism, or anger. So I try to let that final wish - the wish to be remembered as a person of joy, happiness, and energy - guide me and light up my soul.
Regarding my eyes, I'm healing nicely after the cataract surgery, and I see my ophthalmologist again next week for another follow-up. I'm hoping to schedule the left eye surgery for winter break to avoid having to take more time off of work.
I also met with a vascular surgeon at UTSW for evaluation for a PD catheter. I'll be having that done in 2 weeks. It should be a one-day laparoscopic procedure, and I should be able to go home from the hospital the same day. However, I will probably be sore for several days afterwards, so I'm taking a couple of days off of work to allow time to recoup. After the catheter is inserted, I'll be going to a 4-5 hour training and clinic session at the UTSW dialysis center where they will teach me how to clean and use the catheter, making sure I'm able to take care of it over Thanksgiving break.
Within the next couple of months, I'll have frequent appointments in Irving at the dialysis center to receive training and evaluation. Because they will be checking my blood counts regularly, I will not need to see Dr. C in Carrollton any more. At first I was concerned about the change, knowing that I would be starting from square one with the people at UTSW and realizing that I would have to do a LOT more driving, which is a challenge with my work schedule. However, after my last appointment with Dr. C, I feel much better about switching to UTSW. My nephrologist at UT, Dr. Saxena, is the head of the PD dialysis clinic and part of the transplant team. Also, the surgeon who is doing my catheter procedure at UTSW is one of the transplant surgeons, so it's good that they will all be familiar with my case and history.
Today I also received a call from my transplant coordinator to let me know that I have been approved financially for a transplant, meaning that my insurance has been verified and so forth. At this point, I will need to meet with the transplant surgeon (Dr. H, who is doing my catheter procedure) and the nephrologist (Dr. Saxena) to continue moving forward. I will also meet with their dietician on the 23rd to establish a diet plan that will help me reduce my weight while addressing the somewhat odd and specific needs of a dialysis diet (low potassium, low phosphorus, and low sodium). The care at UTSW is truly comprehensive - a team approach - and everyone talks to each other, which is SO nice after having to "coordinate efforts" between doctors myself.
When I saw Dr. C last week, he told me that choosing peritoneal dialysis meant that I was also choosing to get gastric bypass surgery. This surprised me because he made it seem like it was such a definite next step. In fact, he encouraged me to see if the surgeon doing my catheter could do bariatric surgery "while she was in there". It was very alarming and made me very concerned. I really like Dr. C, and he has taken great care of me, but I have found that he often feels compelled to rush into the "next step" quickly, like with my catheter surgery. The folks at UTSW have a systematic approach and process that helps prevent unnecessary procedures and appointments. But Dr. C's suggestion of weight loss surgery, which - to me - seems like a rather drastic approach, caught me off guard.
Here's my theory on weight loss surgery: I know that it has worked for many people, and I would be open to it as an option if needed, especially considering that time is of the essence, and the faster I can lose weight to qualify for transplant, the faster I can get off of dialysis. However, I also know that my body has been put through the ringer lately. I have had awful infections, and I have several more procedures/surgeries coming up soon. Even the surgeon at UTSW said she had concerns about doing both procedures so close together (the catheter and gastric bypass) because they each need a good bit of recovery time.
So to help clear up my confusion (and anxiety), I contacted Dr. Saxena. With such extensive experience in PD, I knew that he would be able to tell me if it was possible to lose weight naturally through diet and exercise on PD. He called me back personally (LOVE that!) and told me about many patients that he has on PD who have lost considerable amounts of weight - some naturally and some through surgery - but all while on PD. He offered to arrange for me to meet with some of them so I could "pick their brains" and hear about their experiences. He also clarified that this decision doesn't have to be made right now. In fact, his suggestion was for me to work with the dietician and get through the catheter procedure first. Then, if I find that the weight loss process isn't advancing as quickly as I'd like, then I could consider weight loss surgery at a later date. I truly breathed a sigh of relief.
This whole thing has been so much so fast. When I look back, I realize that it hasn't even been a year since my diagnosis. Last November we were still in the dark, and my kidney function was still relatively good. In the last 10 months, I've done chemo, fought some REALLY nasty infections, spent WAY too much time in the hospital, had my kidneys decimated, lost my hair, dropped 40 pounds, and had surgery on my eyes. I've gotten so weak that I couldn't step up on a curb, and slowly worked to rebuild my muscles so I could climb multiple flights of stairs. It has been a roller coaster of a ride. Now I have at least two more surgeries "on the books" and who knows how many hours of trainings and appointments ahead of me. I just don't know that I could deal with not being able to eat solid food on top of all of that.
I also love that Dr. Saxena presents OPTIONS to me in a more laid-back approach. Like I told Mike, I have the market on high-stress anxiety cornered. I don't need a doctor who causes me to freak out... I need one to help me know that everything is going to be OK who can calm me down when I become concerned. I am so grateful that I'm able to switch my care to UTSW so I know that I'm receiving the best care possible. They have worked wonders with my father, and I have high hopes that I will have a similar fate with a successful transplant in the near future.
Mike and I have rejoined Cooper Aerobics Center, and I'm excited to try their Zumba classes and meet with their trainers. Between a strong fitness plan and the help of a dietician, I'm hopeful that my transition into dialysis will be as smooth as possible. I'm taking things one day at a time, delighting in the small things (like the hair sprouting back on my head!), and slowly chipping away at all of the different little issues I have going on right now. It's hard to believe that my life has taken such a drastic turn, and sometimes I get frustrated and resentful that so much of Mike's and my financial and emotional resources are going to fighting this illness, but then I also remember how grateful I am to be alive right now - able to work - able to see friends - able to travel.... There was a time when a diagnosis for Wegener's granulomatosis meant certain death in 6-8 months. I'm 10 months past diagnosis, still fighting, and able to live a relatively normal lifestyle. Each and every day is a true blessing.
The fact is I don't know how many years I have left. I hope it's many, but I don't know for sure.... None of us do! I do find myself thinking more about the end of life, though. While it may sound morbid, I have started thinking about how I want to be remembered and what I'd want in terms of an end-of-life ceremony. I know that I don't want a stuffy funeral with everyone dressed up in fancy clothes. I want a PARTY with music, dancing, and laughter! I'd like to be cremated and have my ashes spread someplace beautiful - like an ocean - not buried in a cemetery among people I don't know. After all, I think one's mark on the world is left on the people we impact, rather than a plot of dirt with my name in stone. To me, that's my living legacy. The students I teach, the friends I love, the lives I touch - those are the ways that my memory can be honored forever. As of right now, the most wonderful vacation I've ever had was to Rhode Island with Mike a couple of years ago, so I'd want my ashes to be spread there. And while I know it sounds odd to think about one's own death, that helps me stay focused on how I want to live my life. It helps me remember to take things more lightly and focus on the positive aspects of things. I don't ever want to be remembered as a person of negativity, cynicism, or anger. So I try to let that final wish - the wish to be remembered as a person of joy, happiness, and energy - guide me and light up my soul.
XO to Jennifer. :)
ReplyDelete