I placed an order with Cambrook foods. I'll let you know what I think of the food. Also, I have seen Ener-G brand foods in Whole Foods Markets. I thought it might be useful to make some recommendations concerning lower protein foods that can be purchase in normal grocery stores or health/specialty food markets. I'm finding that most of my shopping happens at health/speciality markets such as Whole Foods and Mother's. I found a brand of granola bar that has just 2 grams of protein per bar and 200 kcals from Health Valley brand. They are cookie bars with vanilla creme. They are super tasty, but the sugar can sometimes gives me heartburn. I didn't used to eat so much sugar. This new diet is a big change. I will get my blood checked next Friday and find out whether it's making any difference. Maybe this blog will help someone else find out about low protein diets BEFORE their kidneys are too far gone.
Friday, April 27, 2007
Back at it
I've been back to the gym now 2 weeks in a row. Tonight I'll go for a quick cardio workout. Just 30 minutes and not too strenuous. I've read that a rigorous workout can make you hungrier afterwards. Even though it's better to work out w/ greater rigor because it has a longer term impact on raising your metabolism, in the short term, the impacts on hunger are greater. In order to stick with my low-protein diet, I have to really limit my caloric intake. I'm struggling with hunger and a strenuous workout would just make it more difficult. As it is I just manage to get about 1800-1900 kcals per day. I'm limiting my protein to just 30 grams per day, but I have gone over several times 5-6 grams or so. Today I discovered a several companies that manufacture low protein foods. They are kind of expensive, but considering the situation, it's worth it. Here they are:
http://www.cambrookefoods.com http://www.ener-g.com http://www.shsna.com http://www.dietspec.com
I placed an order with Cambrook foods. I'll let you know what I think of the food. Also, I have seen Ener-G brand foods in Whole Foods Markets. I thought it might be useful to make some recommendations concerning lower protein foods that can be purchase in normal grocery stores or health/specialty food markets. I'm finding that most of my shopping happens at health/speciality markets such as Whole Foods and Mother's. I found a brand of granola bar that has just 2 grams of protein per bar and 200 kcals from Health Valley brand. They are cookie bars with vanilla creme. They are super tasty, but the sugar can sometimes gives me heartburn. I didn't used to eat so much sugar. This new diet is a big change. I will get my blood checked next Friday and find out whether it's making any difference. Maybe this blog will help someone else find out about low protein diets BEFORE their kidneys are too far gone.
I placed an order with Cambrook foods. I'll let you know what I think of the food. Also, I have seen Ener-G brand foods in Whole Foods Markets. I thought it might be useful to make some recommendations concerning lower protein foods that can be purchase in normal grocery stores or health/specialty food markets. I'm finding that most of my shopping happens at health/speciality markets such as Whole Foods and Mother's. I found a brand of granola bar that has just 2 grams of protein per bar and 200 kcals from Health Valley brand. They are cookie bars with vanilla creme. They are super tasty, but the sugar can sometimes gives me heartburn. I didn't used to eat so much sugar. This new diet is a big change. I will get my blood checked next Friday and find out whether it's making any difference. Maybe this blog will help someone else find out about low protein diets BEFORE their kidneys are too far gone.
Tuesday, April 17, 2007
Feeling Sorry
Today I am feeling a bit sorry for myself. I just realized it a moment ago. I had to attend a meeting this morning after which I typically feel awful. It's my own fault. Also, with the shootings at Virginia Tech, I am feeling so bad for those people.
I have received several cards from family and friends. They are thinking of me -- wishing me strength and reassurances. Another card arrived last night. The cards are thoughtful, but they disturb me. They make me think about the situation. I'm trying to live a normal life and if I think about my kidneys too much, I begin to realize the gravity of my medical condition. I know how upset I was when I initially heard and I don't want to be back in that place again. Feeling sorry for myself is the last thing I should let happen. I don't want to talk about it w/ others because it feels odd. When they know, the knowledge of it hangs in the air during our conversations. They don't say anything about it, but I know they know. It's heavy in the room. That makes things all that much more difficult for me since it's impossible for me to be "normal." Perhaps it's me projecting those feelings, but I suspect not.
I still haven't heard from our very good friends who live outside the U.S. Not an email, card or phone call. I guess different people deal with this differently.
I haven't been to the gym in a week. I need to go today, but I have a hair appointment. Tomorrow we go to the accountant. Who knows when I'll get back to the gym.
I have received several cards from family and friends. They are thinking of me -- wishing me strength and reassurances. Another card arrived last night. The cards are thoughtful, but they disturb me. They make me think about the situation. I'm trying to live a normal life and if I think about my kidneys too much, I begin to realize the gravity of my medical condition. I know how upset I was when I initially heard and I don't want to be back in that place again. Feeling sorry for myself is the last thing I should let happen. I don't want to talk about it w/ others because it feels odd. When they know, the knowledge of it hangs in the air during our conversations. They don't say anything about it, but I know they know. It's heavy in the room. That makes things all that much more difficult for me since it's impossible for me to be "normal." Perhaps it's me projecting those feelings, but I suspect not.
I still haven't heard from our very good friends who live outside the U.S. Not an email, card or phone call. I guess different people deal with this differently.
I haven't been to the gym in a week. I need to go today, but I have a hair appointment. Tomorrow we go to the accountant. Who knows when I'll get back to the gym.
Friday, April 13, 2007
Lotion Recommendation
I find that with the loss of kidney function, my skin and hair is dry. I am getting older and certainly some of the skin changes are due to that fact, but I believe that the PKD is complicating things. Other kidney patients may be dealing with this as well, so I want to share a product recommendation. I found this terrific face lotion at TJ Maxx. It's from Elizabeth Arden and it's called Let There Be Light - Radiant Skin Lotion. It has SPF 15. I wear an SPF 35 face lotion every day -- under my make-up, but I use the Arden product during the day, at my desk. The great thing about it is that it has a sort of glimmer along with some moisture so you really glow. When you're skin is dehydrated, you lose the glow that is normal in healthy skin. This lotion gives you back that glow.
Also, I highly recommend Obagi Healthy Skin Protector with SPF 35. The great thing about this is that there is 9% zinc oxide so it stays on the skin much longer. Most sunscreen effectiveness wear off during the day, but the zinc oxide helps this sunscreen lotion last most of the day. Since I began using this, I have noticed a significant decrease in the sun damage to my skin.
Also, I highly recommend Obagi Healthy Skin Protector with SPF 35. The great thing about this is that there is 9% zinc oxide so it stays on the skin much longer. Most sunscreen effectiveness wear off during the day, but the zinc oxide helps this sunscreen lotion last most of the day. Since I began using this, I have noticed a significant decrease in the sun damage to my skin.
Thursday, April 12, 2007
Transplant Evaluation - NUTRITION??
Okay, here is the latest....I went to my transplant evaluation meeting on Friday. I met with many different people -- each of whom got to listen to my heart and palpate my tummy. Perhaps this is a method of medical "checks and balances." hmph.
I met with the transplant coordinator. One of the most competent employees at the Medical Center that I've ever met. Honestly, I often deal with the "least common denominator" employees when dealing with making appointments, trying to contact my doctor, paying my bill...and yet I know from experience that the medical professionals are truly competent. Well, this was the most impressive medical experience I have had. The coordinator was professional, knowledgeable, responsive, etc. She's terrific. She had her staff make appointments FOR ME! They called me promptly and they scheduled my multiple appointments together on a single day. They speak in complete sentences and they are patient and competent. They even emailed docs to me when I needed them ASAP. It's been terrific.
Then I met with the nephrologist's assistant -- thus began my first reciting of the medical history and physical exam.
Then I met with the nephrologist. She knows me so not much history required. She talked about how I'm getting worked up early so I can go directly to a live donor transplant. The latest medical research encourages this approach -- no more dialysis if you can avoid it.
Then I met with the surgeon. Another physical exam. But first, he allowed me to ask my many, many questions. He seemed amused. I had investigated all I could (I'm a librarian, after all) about the drugs that are used to keep the transplanted kidney from rejecting. That's most important to me because I know I'll have to take the drugs for the rest of my life. I have a lot of information I want to share about these drugs, but I'll write a specific entry later. The transplant coordinator told me later than she's never seen the surgeon spend as much time with any other patient. He was very reassuring. He talked about how the risks of diabetes or other complications related to the immunosuppressant drugs are much less for younger, healthier, PKD transplant patients. He also showed me where the incision would be -- in my lower groin. I was relieved that the incision is low enough to still reasonably wear a 2-piece swimsuit. I know that sounds trivial, but I don't want to be disfigured. I know life will change, but the fewer changes the better -- and changing my swimsuit habits would be a change.
Then I met with a nutritionist. I was so surprised when I scheduled the appointment and they told me that I would meet with a nutritionist. That seems like a very progressive medical approach. Usually, physicians don't talk about nutrition at all. Even my nephrologist didn't volunteer info about nutritional habits and the impact on kidney failure -- I had to specifically ask. When I did, she only talked about caffeine, but as it turns out, there is a lot of information concerning the benefits of a low protein diet for kidney failure patients. I want to share with you what I found. Basically, the nutritionist recommended that I cut back on sodium, protein, potassium and phosphorus. She gave me some numbers to shoot for, as well, but I have found much more extreme estimates in the medical literature. For instance, the nutritionist recommended I cut my protein to 40-50 grams per day, but some of the medical studies that have been conducted cut their patients back to as little .3 g of protein per kg of body weight per day. That's about 20 grams of protein for a 150lb person. That's very, very difficult to do and some of the studies actually give amino acid (the building blocks of proteins) supplements to the patients while they are on the low protein diets (in addition to other supplements like calcium carbonate - which I'm not taking.)
Check the new feature in the right-hand column. I compiled a list of the references I gathered concerning low-protein diets that might influence renal health. There is a Cochrane Library review article on this topic. In case you aren't familiar with Cochrane reviews, they are systematic reviews, authoritative, scholarly and recognised by medical professionals and the academic community as the "gold standard in evidence-based health care." You will want to locate this article at your local library (if they don't have access to Cochrane Library reviews, they can order it for you from another library), but here is one significant portion:
"Updating two previous meta-analyses...this review shows that reducing the protein intake of patients with chronic kidney disease significantly reduces the number of patients entering end-stage renal disease by about 30%..." The citation to this review article is available in the list of articles on the right.
Then I had to give a boatload of blood, get a chest x-ray, give a urine sample, and get a skin test for a couple of immunizations. Later, I have to get a pap smear, dental check-up, abdominal ultrasound, cardio ultrasound, hepatitis vaccinations, an additional blood test (another tube for blood typing) and I'll meet with a social worker.
THE GOOD NEWS:
-My creatinine went down 2 tenths between March 9th and April 6th. I'm now at a 3.9. This is NOT due to my new low protein diet because I didn't begin the diet until April 7th.
-I am blood type B. Too bad. I hoped to be AB since AB can accept donations from A, B, O or AB blood typed donors. Hopefully, my husband has either type B or type O blood.
I met with the transplant coordinator. One of the most competent employees at the Medical Center that I've ever met. Honestly, I often deal with the "least common denominator" employees when dealing with making appointments, trying to contact my doctor, paying my bill...and yet I know from experience that the medical professionals are truly competent. Well, this was the most impressive medical experience I have had. The coordinator was professional, knowledgeable, responsive, etc. She's terrific. She had her staff make appointments FOR ME! They called me promptly and they scheduled my multiple appointments together on a single day. They speak in complete sentences and they are patient and competent. They even emailed docs to me when I needed them ASAP. It's been terrific.
Then I met with the nephrologist's assistant -- thus began my first reciting of the medical history and physical exam.
Then I met with the nephrologist. She knows me so not much history required. She talked about how I'm getting worked up early so I can go directly to a live donor transplant. The latest medical research encourages this approach -- no more dialysis if you can avoid it.
Then I met with the surgeon. Another physical exam. But first, he allowed me to ask my many, many questions. He seemed amused. I had investigated all I could (I'm a librarian, after all) about the drugs that are used to keep the transplanted kidney from rejecting. That's most important to me because I know I'll have to take the drugs for the rest of my life. I have a lot of information I want to share about these drugs, but I'll write a specific entry later. The transplant coordinator told me later than she's never seen the surgeon spend as much time with any other patient. He was very reassuring. He talked about how the risks of diabetes or other complications related to the immunosuppressant drugs are much less for younger, healthier, PKD transplant patients. He also showed me where the incision would be -- in my lower groin. I was relieved that the incision is low enough to still reasonably wear a 2-piece swimsuit. I know that sounds trivial, but I don't want to be disfigured. I know life will change, but the fewer changes the better -- and changing my swimsuit habits would be a change.
Then I met with a nutritionist. I was so surprised when I scheduled the appointment and they told me that I would meet with a nutritionist. That seems like a very progressive medical approach. Usually, physicians don't talk about nutrition at all. Even my nephrologist didn't volunteer info about nutritional habits and the impact on kidney failure -- I had to specifically ask. When I did, she only talked about caffeine, but as it turns out, there is a lot of information concerning the benefits of a low protein diet for kidney failure patients. I want to share with you what I found. Basically, the nutritionist recommended that I cut back on sodium, protein, potassium and phosphorus. She gave me some numbers to shoot for, as well, but I have found much more extreme estimates in the medical literature. For instance, the nutritionist recommended I cut my protein to 40-50 grams per day, but some of the medical studies that have been conducted cut their patients back to as little .3 g of protein per kg of body weight per day. That's about 20 grams of protein for a 150lb person. That's very, very difficult to do and some of the studies actually give amino acid (the building blocks of proteins) supplements to the patients while they are on the low protein diets (in addition to other supplements like calcium carbonate - which I'm not taking.)
Check the new feature in the right-hand column. I compiled a list of the references I gathered concerning low-protein diets that might influence renal health. There is a Cochrane Library review article on this topic. In case you aren't familiar with Cochrane reviews, they are systematic reviews, authoritative, scholarly and recognised by medical professionals and the academic community as the "gold standard in evidence-based health care." You will want to locate this article at your local library (if they don't have access to Cochrane Library reviews, they can order it for you from another library), but here is one significant portion:
"Updating two previous meta-analyses...this review shows that reducing the protein intake of patients with chronic kidney disease significantly reduces the number of patients entering end-stage renal disease by about 30%..." The citation to this review article is available in the list of articles on the right.
Then I had to give a boatload of blood, get a chest x-ray, give a urine sample, and get a skin test for a couple of immunizations. Later, I have to get a pap smear, dental check-up, abdominal ultrasound, cardio ultrasound, hepatitis vaccinations, an additional blood test (another tube for blood typing) and I'll meet with a social worker.
THE GOOD NEWS:
-My creatinine went down 2 tenths between March 9th and April 6th. I'm now at a 3.9. This is NOT due to my new low protein diet because I didn't begin the diet until April 7th.
-I am blood type B. Too bad. I hoped to be AB since AB can accept donations from A, B, O or AB blood typed donors. Hopefully, my husband has either type B or type O blood.
Friday, April 6, 2007
Side Effects
I go to my transplant evaluation tomorrow. I have had a good week, but I'm realizing that that is because I'm ignoring the negatives related to this disease. Really, I have managed to put all of that out of my mind. Right now I'm feeling a little worried. I know going to gym makes me feel strong and indestructible and ...well, there are great odds that I'll do well because I'm so healthy. But these medicines are super powerful and cause some crazy side effects. I've been reading about bone disease problems, diabetes and many side effects like constipation, stomach pain, nausea, heartburn, diarrhea...the steroids cause you to have a voracious appetite and thus you gain weight and you get a round look to your face. So, I'll be alive, but I'll be fat, diabetic, ugly, won't be able to eat spicy food and will easily break bones...will I also go bald? Ii did see that as a side effect of one of the drugs. I don't remember which. No wonder my Dad gave up and preferred to die. Who could blame him?
Wednesday, April 4, 2007
Strength
Last night I went to the gym. I usually lift weights and do cardio on Tuesdays and Fridays. Then I do a quick cardio workout on Wed and spin class on Thursday. I'm also active on the weekends. Some more than others, but basically, I take care of myself. The point is that I just can't get over how strong and fit I felt at the gym last night. For the first time since "the news" I felt like I could kick the world's ass. Really. What the hell am I worried about? I am fit and healthy. I've been a vegetarian for 15 years. I exercise regularly and take good care of myself. If anyone is up to the challenge of a kidney transplant, I am. I'll show them what an ideal patient looks like. I don't look forward to getting back in shape again after the recovery period, but I can do it. I'll be more fit than ever. I do worry a bit about them having to cut through my muscle inthe lower groin to do the surgery. Will that ruin my muscles so I'll never have a flat tummy again? I sound so shallow, but I do work hard to be fit. I deserve to look good.
The point is that I'm feeling good today.
The point is that I'm feeling good today.
Tuesday, April 3, 2007
Talking About It
Today I started to tell a few people. First my closest female friend. I don't think she knew how to deal with it. I heard her typing something while we were talking. Then I told a male friend who is older and more experienced with medical problems. He was super compassionate. He even said he's be tested for donation if I needed. I couldn't believe it.
Then I had to call my mother. I read something last night on one of the kidney transplant sites I've been visiting on a daily basis...that I need to talk to people about this. That I need to rely on my family and friends for support -- or others in the same situation. I actually do feel better after telling a few people. But I still don't know about revealing anything to people at work.
Back to mom. She's been through all this with my dad. That was nearly 30 years ago and a lot of things have changed. She was upset. I could hear it in her voice, but she was being pretty calm. She didn't want me to be upset. I'm actually a little surprised at how calm she was. I think she could hear that I was already to a point where I was dealing well with it -- well, not really, but I can hold things together for brief periods.
The funny thing is that it is so distracting. It's like I can't STOP thinking about it. I feel as though I in an altered state -- that this isn't really happening to me. Like I'm floating around in some other world and not my real life. Maybe because my feelings are so disconnected from the usually daily activities. I'm living in my mind -- trying to deal with a new reality and the changes that are inevitable. I mean, when in your life are you presented with such major changes the are truly out of your control? I mean, if I want to LIVE, I have to do this. Most people would choose to live. That means coming to terms with the changes that are inevitable.
But I have so many concerns that might seem insignificant like how will I implement this new software for my job before I leave for the surgery? Will someone else have become more of an expert while I'm out? Will I have a job to return to -- I don't mean that I think they'll fire me, they can't, but will they do w/out my position for so long that when I return, they will no longer need me? Can I work from home while I'm recovering? I could take a 10 month contract and use the 2 months off for my surgery. Can I return to work w/in 2 months of transplant surgery? Will I have to leave before I can even train the staff on how to use the software? If so, how will I ever establish rapport with them? Will people treat me differently when I get back? How? Will they respect me less -- that is, will they treat me like a sick person and sort of talk down to me or feel sorry for me? Maybe they'll like me more and be nicer to me. Goodness knows they haven't been all that great to work with thus far. They are extremely disant and cold. When do I tell them?
I have so many questions. The uncertainty is tearing me apart.
Last night I logged into medlineplus.gov and searched for kidney transplant. There are so many great resources there. Including a video of a live donor kidney transplant. I watched almost the entire video. It was amazing.
Then I had to call my mother. I read something last night on one of the kidney transplant sites I've been visiting on a daily basis...that I need to talk to people about this. That I need to rely on my family and friends for support -- or others in the same situation. I actually do feel better after telling a few people. But I still don't know about revealing anything to people at work.
Back to mom. She's been through all this with my dad. That was nearly 30 years ago and a lot of things have changed. She was upset. I could hear it in her voice, but she was being pretty calm. She didn't want me to be upset. I'm actually a little surprised at how calm she was. I think she could hear that I was already to a point where I was dealing well with it -- well, not really, but I can hold things together for brief periods.
The funny thing is that it is so distracting. It's like I can't STOP thinking about it. I feel as though I in an altered state -- that this isn't really happening to me. Like I'm floating around in some other world and not my real life. Maybe because my feelings are so disconnected from the usually daily activities. I'm living in my mind -- trying to deal with a new reality and the changes that are inevitable. I mean, when in your life are you presented with such major changes the are truly out of your control? I mean, if I want to LIVE, I have to do this. Most people would choose to live. That means coming to terms with the changes that are inevitable.
But I have so many concerns that might seem insignificant like how will I implement this new software for my job before I leave for the surgery? Will someone else have become more of an expert while I'm out? Will I have a job to return to -- I don't mean that I think they'll fire me, they can't, but will they do w/out my position for so long that when I return, they will no longer need me? Can I work from home while I'm recovering? I could take a 10 month contract and use the 2 months off for my surgery. Can I return to work w/in 2 months of transplant surgery? Will I have to leave before I can even train the staff on how to use the software? If so, how will I ever establish rapport with them? Will people treat me differently when I get back? How? Will they respect me less -- that is, will they treat me like a sick person and sort of talk down to me or feel sorry for me? Maybe they'll like me more and be nicer to me. Goodness knows they haven't been all that great to work with thus far. They are extremely disant and cold. When do I tell them?
I have so many questions. The uncertainty is tearing me apart.
Last night I logged into medlineplus.gov and searched for kidney transplant. There are so many great resources there. Including a video of a live donor kidney transplant. I watched almost the entire video. It was amazing.
Monday, April 2, 2007
Focus
I'm still finding it's difficult to focus. I can't decide whether to talk about it w/ others or not. Part of me wants to tell someone, but another part of me says to just be quiet and try to live normally. How can I live normally? This is on my mind all the time. I try to keep busy, but it's always there in my mind, humming in the background. I just want to let it go for a few days and relax a bit. It's not imminent after all. Why not just put it out of my mind for a few days? Indeed, if it were so easy, I would have forgotten already. And of course, I have to get my blood tested again this week. Once a month updates now. We'll keep right on top of this kidney failure so I can rush to get a transplant as soon as it's necessary. Damn. The only reason I want to tell people is to get them thinking about donating their kidneys to me. It seems crazy, but I suspect some of my friends will show interest.
My husband told our close friends this weekend and surprisingly, they haven't emailed me. They are both quite young and maybe they don't understand the significance. Then again, maybe my husband made it seem less major so they wouldn't worry much. He might have exaggerated the estimated time I have left on my native kidneys.
Speaking of my husband, he is acting really close to me. Sitting near me a lot and kissing me differently. I don't like it. I know that sounds awful, but I don't like being treated differently, AT ALL. I don't want to deal w/ this.
My husband told our close friends this weekend and surprisingly, they haven't emailed me. They are both quite young and maybe they don't understand the significance. Then again, maybe my husband made it seem less major so they wouldn't worry much. He might have exaggerated the estimated time I have left on my native kidneys.
Speaking of my husband, he is acting really close to me. Sitting near me a lot and kissing me differently. I don't like it. I know that sounds awful, but I don't like being treated differently, AT ALL. I don't want to deal w/ this.
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