All Aboard!
Yesterday, I met with my regular nephrologist to discuss my recent health developments. During our discussion, there were several things that came to light. First of all, he explained that I will most likely lose all of my hair eventually. Apparently, this summer I had full-blown sepsis caused by cellulitis. That was what landed me in ICU for several days. It's very common to lose hair due to a process called telogen effluvium in which the normal cycle of hair growth and death is disrupted by severe illness, infection, or medication. He also let me know that I may lose my hair periodically throughout the rest of my life, even after it grows back this time. Any time my body goes through trauma, such as kidney transplant, I will likely lose my hair. Yea! :) I told him that I was tempted to shave it all, even though I would look like a cancer patient. His response was, "Well, Jennifer, you are a cancer patient. Just without the cancer." Good point, Doc!
We also discussed my hormonal situation. I have early onset menopause as a result of the medications. His hope is that this is temporary, and that my system will return to normal after a period of time. My OBGYN, however, isn't as optimistic. He is researching hormone replacement therapy options to help manage the hot flashes and other symptoms. In the meantime, Mike and I joke around by saying that I should hook myself up to electrodes to harness my internal heat energy. With the way things have been going, I could power half of DFW!
The biggest topic of discussion, as always, was my kidneys and the next steps in my treatment. I shared the recommendations of the doctor from UT Southwestern with Dr. C, and he is on board with me trying peritoneal dialysis. His concern was that most dialysis patients gain weight, particularly patients on PD. The dialysis solution that is put in the abdomen is made of dextrose, which the body then converts to glucose. So, I'd be taking in an additional 400 calories a day from the dialysis solution, which can make my weight loss efforts even harder. I asked if I could offset the 400 calories by reducing my intake from food, and he said that would work, but that I would have to be extremely vigilant. After weighing the risks and benefits of hemodialysis and PD, we decided to start with PD. He anticipates that I'll need to start dialysis in 1-2 months, which is much sooner than I had hoped. So, even if I had gotten the fistula access this Friday, it is likely that I would need to do PD for a while anyway while the fistula grows and heals. Currently, the plan is to switch Friday's procedure from the fistula surgery to a procedure to insert a catheter for PD in my abdomen. My doctor contacted the surgeon, and I'll follow up with him today. The catheter takes 2-4 weeks to heal and be usable, so my doctor definitely wants me to get that done as soon as possible.
Of course, dialysis is a temporary solution. The ultimate goal is a kidney transplant. My doctor has a goal of me getting a transplant in the next 6-8 months. Again, that was much sooner than I had anticipated. Before that can happen, I need to lose at least 60 pounds, so it's time to buckle down and get this done. I've struggled with weight my whole life, but this time it's not about fitting into a cute pair of jeans or wearing a swimsuit on the beach. It's so I can have a procedure that will save my life. He started asking about donors as well. The average wait time on the kidney transplant list is 4-5 years, so the hope is that I can find a match sooner. His preference was family members first, followed by non-related family members with the same blood type (I'm O+). I'm so blessed to have several people who are interested in getting tested and considering donation.
When my dad received his lungs, our whole family was filled with such an immense sense of gratitude toward the donor and his family. Because we didn't know the donor, the feelings were somewhat nebulous and broad. Knowing that my kidney will likely come from someone very close to me has a different feeling. There's a strong sense of obligation and responsibility. I would do everything in my power to keep that kidney strong and working for as long as possible, knowing personally that someone loved me so much to make such an incredible sacrifice. It's a difficult topic to address, but my family has made the impossible seem not only possible, but easy.
This last week, as I've been coming to the realization that all of this is in fact really happening, facing the loss of my hair (as silly as that sounds), understanding that I've hit menopause WAY too soon, and planning for medical procedures that will literally change my life, I have been surrounded by so much incredible love and support. Everywhere I turn, there's a hand to hold, a shoulder to lean on, or an ear to listen. I know that the next year is going to be a hard fight. It hit me last night that my journey is just getting started, and there will be a long and probably very bumpy road ahead. Today a sweet friend who is very dear to me said, "Jennifer, if anyone can make it through this, it's you." Her words meant so much to me because my faith in myself is bolstered by the faith of those around me.
So thank you for your thoughts, for your prayers, and for your kindness. It helps me more than you will probably ever know.
We also discussed my hormonal situation. I have early onset menopause as a result of the medications. His hope is that this is temporary, and that my system will return to normal after a period of time. My OBGYN, however, isn't as optimistic. He is researching hormone replacement therapy options to help manage the hot flashes and other symptoms. In the meantime, Mike and I joke around by saying that I should hook myself up to electrodes to harness my internal heat energy. With the way things have been going, I could power half of DFW!
The biggest topic of discussion, as always, was my kidneys and the next steps in my treatment. I shared the recommendations of the doctor from UT Southwestern with Dr. C, and he is on board with me trying peritoneal dialysis. His concern was that most dialysis patients gain weight, particularly patients on PD. The dialysis solution that is put in the abdomen is made of dextrose, which the body then converts to glucose. So, I'd be taking in an additional 400 calories a day from the dialysis solution, which can make my weight loss efforts even harder. I asked if I could offset the 400 calories by reducing my intake from food, and he said that would work, but that I would have to be extremely vigilant. After weighing the risks and benefits of hemodialysis and PD, we decided to start with PD. He anticipates that I'll need to start dialysis in 1-2 months, which is much sooner than I had hoped. So, even if I had gotten the fistula access this Friday, it is likely that I would need to do PD for a while anyway while the fistula grows and heals. Currently, the plan is to switch Friday's procedure from the fistula surgery to a procedure to insert a catheter for PD in my abdomen. My doctor contacted the surgeon, and I'll follow up with him today. The catheter takes 2-4 weeks to heal and be usable, so my doctor definitely wants me to get that done as soon as possible.
Of course, dialysis is a temporary solution. The ultimate goal is a kidney transplant. My doctor has a goal of me getting a transplant in the next 6-8 months. Again, that was much sooner than I had anticipated. Before that can happen, I need to lose at least 60 pounds, so it's time to buckle down and get this done. I've struggled with weight my whole life, but this time it's not about fitting into a cute pair of jeans or wearing a swimsuit on the beach. It's so I can have a procedure that will save my life. He started asking about donors as well. The average wait time on the kidney transplant list is 4-5 years, so the hope is that I can find a match sooner. His preference was family members first, followed by non-related family members with the same blood type (I'm O+). I'm so blessed to have several people who are interested in getting tested and considering donation.
When my dad received his lungs, our whole family was filled with such an immense sense of gratitude toward the donor and his family. Because we didn't know the donor, the feelings were somewhat nebulous and broad. Knowing that my kidney will likely come from someone very close to me has a different feeling. There's a strong sense of obligation and responsibility. I would do everything in my power to keep that kidney strong and working for as long as possible, knowing personally that someone loved me so much to make such an incredible sacrifice. It's a difficult topic to address, but my family has made the impossible seem not only possible, but easy.
This last week, as I've been coming to the realization that all of this is in fact really happening, facing the loss of my hair (as silly as that sounds), understanding that I've hit menopause WAY too soon, and planning for medical procedures that will literally change my life, I have been surrounded by so much incredible love and support. Everywhere I turn, there's a hand to hold, a shoulder to lean on, or an ear to listen. I know that the next year is going to be a hard fight. It hit me last night that my journey is just getting started, and there will be a long and probably very bumpy road ahead. Today a sweet friend who is very dear to me said, "Jennifer, if anyone can make it through this, it's you." Her words meant so much to me because my faith in myself is bolstered by the faith of those around me.
So thank you for your thoughts, for your prayers, and for your kindness. It helps me more than you will probably ever know.
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