ER visits and Dietary changes
The emphasis on lowering the K intake was significant. This rules out two of my favorite foods- potatoes, bananas and many nuts. A baked potato or a single banana high in K (almost to 900 mg). Previously, in Sep 2011, I had to rush to the ER as my K value in blood was 6.3. Anything over 6.0 is considered and emergency. At the ER they gave me a dose of Kayexalate and this quickly cleared the K on blood. I was admitted to the hospital for 2 nights. I learnt that high K (hyperkalemia) can cause heart problems and is capable of stopping the heart. And unlike b.p. hyperkalemia is not measurable at home. Once out of the ER, Dr. RR suggested that I take Kayexalate after I eat high K food. High K was clearly caused by CKD but is also promoted by ACE Inhibitors- in my case the Enalapril. However, Dr. RR asked me to continue with the Enalapril for its kidney-protective value. I started on Kayexalate, once a week in addition to avoiding high K foods from the list.
My next trip to the ER was in Feb 2013, again for high creatinine and potassium. I had just returned from India and had a fever upon arrival. That's when I learnt that dehydration can cause your serum creatinine to be high. After this started drinking more water. I was advised to have 3 lt. per day.
So now I had lowered my Sodium (Na), Potassium, protein and increased the water. Lowering the protein started to have its effects. My muscles started to weaken noticeably in about two months. Increasing the water caused the Na levels in blood to go down to dangerous levels. Dr. RR asked me to cut back on the water. He said that low Na would lead to dizziness and confusion. I had no such symptoms. Moreover, my body got used to the water intake and I would feel thirsty if I reduced the water. At that point Dr. RR decided to removed the HcTz portion (diuretic) of the Enalapril-HcTz. My b.p. remained stable and so I continued with the 3 b.p. pills and the Na levels came up to the low end of normal range.
At my first KTC visit I had picked up some literature that described changes in the levels of Phosphorus (P) and since I did not see thiese tested asked Dr. RR if was necessary. He added it to my standing order for monthly blood draws. My P came back abnormally high and so started on phosphorus-binder- TUMS. TUMS is a source of Calcium (Ca) which binds P. Along with this came a list of food high and low in P. My diet changes once again. I started cutting down on dals (lentils) and rotis (wheat) and being vegetarian at home I was dependent on eating chicken for my proteins. Even chocolate was taboo. Another unintended consequence of high P was that the TUMS taken to counter it caused constipation for which I started to use Metamucil and Pericolace tablets daily. The Phosphorus levels came down a little but not by much and the doctor added Calcitrol. Calcitrol is a form of Vitamin D given to increase the Calcium levels which would help with the P reduction.
Along with these changes 3 very significant parameters also started to change. The hemoglobin (Hb) started to drop. I have always been chronically borderline anemic probably due to the early stage CKD. My body had adjusted to the lower Hb levels without a problem. Along with the rise in the creatinine my Hb started to drop below 9 mg and I started to sense it. I would have to stop more frequently to catch my breath. Dr. RR had already introduced erythpoietin (EPO or Procrit) as a possible treatment to shore up the Hb. I was avoiding this as this would mean going to a clinic to get this injection weekly. This was inconvenient. Plus it was not too bad. Along with the limited breathlessness came a sense of tiredness increasing towards the end of the day. Well, later on I had to start on Procrit because it then became a necessity.
The second value of importance is the eGFR (estimated Glomerular Filtration Rate). This is a calculated estimate and measures how well your kidney is filtering fluids. This is a parameter used in CKD staging also. For example, eGFR of 15-30ml/min would be Stage 4. Well, I was at Stage V, the last CKD stage, in Jun 2015. My eGFR was 11. Dr. RR had started mentioning 'dialysis' asking me to be mentally prepared for it.
The third number that really had me turn towards dialysis was the blood urea nitrogen (BUN). This was part of my monthly blood tests and started to climb noticeably. Like creatinine there was no way to control these values except through diet. In mid-2015 along with my creatinine crossing 5.0 the BUN crossed a 100. I had no symptoms of it. In the early August tests the BUN was 134 and simultaneously I had the symptoms of 'restless legs' (RLS). This was the weirdest feeling I've ever had. And it affects you most when you are ready to sleep at night. Your legs start to shiver uncontrollably. If you try to hold it down, your entire body would pulsate. Effectively, the RLS did not allow me to sleep a wink for 8 nights. Driving to work was becoming difficult. Working a full day was requiring multiple cups of coffee to stay awake. The RLS got worse to the level that my legs would vibrate even while sitting. I informed Dr. RR and he recommended I start on Requip. He also told me that there was no guarantee it would be effective and that I should consider dialysis. The RLS was due to the toxicity in the body and will need to be removed.
Since the dreaded 'D' word was spoken and I knew it would be life-changing for me I started to consider what I could do diet-wise to lower the BUN. I began with the simplest thing I could do right way. Stop eating chicken. I would eat chicken in the form of sandwiches or wraps whenever I could. Chicken was my main form of protein now that beans and lentils were out due to the K or the P controls. Cutting out chicken made the difference in the BUN which dropped to 78 and after 3 weeks of talking the Reuip I stopped taking it and the RLS also went away. Good riddance. Because, the Requip would get the night's sleep I needed but also made me a zombie during the day!! Also, 1 les meds for the day was better.
Cutting chicken meant that I had to supplement my protein some other way. I resorted to having egg-whites (egg yellow has the P, avoidable). However, over a period of two months I started to feel weaker due to the reduced protein in my diet. I continued to have whey protein and egg-white which would still ad up to only a third of the daily value. This along with the reducing Hb was making me weak and tired. It was noticeable.
The good news was that my brother, Rajesh, had already getting himself tested at RUSH as a potential kidney donor and his HLA tests were already known to be a good match. This was around the time when the dreaded 'D' words were first spoken by Dr. RR. But there were many more tests to be done before he is officially approved. Since he was in San Jose, CA, Rajesh's blood tests were done there and results were sent in to RUSH. It was a slow process and he was following it up efficiently. Meanwhile, Dr. RR felt that since dialysis was imminent and this would mean frequent follow-up with the nephrologists he wanted me to see another nephrologist closer to home. Dr. Dodhia was Dr. RR's student at RUSH and was referred and in-network with my insurance. Dr. Dodhia gave me some sights into the types of dialysis. There were two main types based on where the dialysis could happen- in-center (hemo-dialysis) or at home (peritoneal). He also put the fear of kidney disease as to what could happen if I delayed the dialysis- endocarditis (infections in the heart muscle), or neurologic symptoms. I tried telling him that other than the recent RLS and some breathlessness I had not bothersome symptoms. I felt he was a panic-monger but then I was biased. He was simply recommending based on his experiences with CKD patients.
Dr. Dodhia asked me to consult with a surgeon to get a PD catheter implanted. I kept that appointment and told the surgeon that I had tickets to go to India for a month and the surgery would come in the way. She was ok with scheduling the surgery at short notice if I needed it. I would keep her informed. One of the questions in relation to CKD she asked was 'are you making urine'. I was. One of her concerns was with my bleeding tendencies due to hemophilia. I realized- perhaps she has not done surgeries on hemophiliacs. The next time I met Dr. D he wanted to, again, have the PD put in this time by a surgeon at RUSH. I pushed back again saying that I was feeling better with no RLS, and my BUN and creatinine was better (the 'no chicken' changes). Meanwhile, Rajesh was to visit RUSH for a personal meet with the transplant team and get more tests completed. Things were looking good and I knew I just had to hang in there with my diet and my routine tests. You can follow Rajesh's experience as a he went through his workup at RUSH in his blog.
The emphasis on lowering the K intake was significant. This rules out two of my favorite foods- potatoes, bananas and many nuts. A baked potato or a single banana high in K (almost to 900 mg). Previously, in Sep 2011, I had to rush to the ER as my K value in blood was 6.3. Anything over 6.0 is considered and emergency. At the ER they gave me a dose of Kayexalate and this quickly cleared the K on blood. I was admitted to the hospital for 2 nights. I learnt that high K (hyperkalemia) can cause heart problems and is capable of stopping the heart. And unlike b.p. hyperkalemia is not measurable at home. Once out of the ER, Dr. RR suggested that I take Kayexalate after I eat high K food. High K was clearly caused by CKD but is also promoted by ACE Inhibitors- in my case the Enalapril. However, Dr. RR asked me to continue with the Enalapril for its kidney-protective value. I started on Kayexalate, once a week in addition to avoiding high K foods from the list.
My next trip to the ER was in Feb 2013, again for high creatinine and potassium. I had just returned from India and had a fever upon arrival. That's when I learnt that dehydration can cause your serum creatinine to be high. After this started drinking more water. I was advised to have 3 lt. per day.
So now I had lowered my Sodium (Na), Potassium, protein and increased the water. Lowering the protein started to have its effects. My muscles started to weaken noticeably in about two months. Increasing the water caused the Na levels in blood to go down to dangerous levels. Dr. RR asked me to cut back on the water. He said that low Na would lead to dizziness and confusion. I had no such symptoms. Moreover, my body got used to the water intake and I would feel thirsty if I reduced the water. At that point Dr. RR decided to removed the HcTz portion (diuretic) of the Enalapril-HcTz. My b.p. remained stable and so I continued with the 3 b.p. pills and the Na levels came up to the low end of normal range.
At my first KTC visit I had picked up some literature that described changes in the levels of Phosphorus (P) and since I did not see thiese tested asked Dr. RR if was necessary. He added it to my standing order for monthly blood draws. My P came back abnormally high and so started on phosphorus-binder- TUMS. TUMS is a source of Calcium (Ca) which binds P. Along with this came a list of food high and low in P. My diet changes once again. I started cutting down on dals (lentils) and rotis (wheat) and being vegetarian at home I was dependent on eating chicken for my proteins. Even chocolate was taboo. Another unintended consequence of high P was that the TUMS taken to counter it caused constipation for which I started to use Metamucil and Pericolace tablets daily. The Phosphorus levels came down a little but not by much and the doctor added Calcitrol. Calcitrol is a form of Vitamin D given to increase the Calcium levels which would help with the P reduction.
Along with these changes 3 very significant parameters also started to change. The hemoglobin (Hb) started to drop. I have always been chronically borderline anemic probably due to the early stage CKD. My body had adjusted to the lower Hb levels without a problem. Along with the rise in the creatinine my Hb started to drop below 9 mg and I started to sense it. I would have to stop more frequently to catch my breath. Dr. RR had already introduced erythpoietin (EPO or Procrit) as a possible treatment to shore up the Hb. I was avoiding this as this would mean going to a clinic to get this injection weekly. This was inconvenient. Plus it was not too bad. Along with the limited breathlessness came a sense of tiredness increasing towards the end of the day. Well, later on I had to start on Procrit because it then became a necessity.
The second value of importance is the eGFR (estimated Glomerular Filtration Rate). This is a calculated estimate and measures how well your kidney is filtering fluids. This is a parameter used in CKD staging also. For example, eGFR of 15-30ml/min would be Stage 4. Well, I was at Stage V, the last CKD stage, in Jun 2015. My eGFR was 11. Dr. RR had started mentioning 'dialysis' asking me to be mentally prepared for it.
The third number that really had me turn towards dialysis was the blood urea nitrogen (BUN). This was part of my monthly blood tests and started to climb noticeably. Like creatinine there was no way to control these values except through diet. In mid-2015 along with my creatinine crossing 5.0 the BUN crossed a 100. I had no symptoms of it. In the early August tests the BUN was 134 and simultaneously I had the symptoms of 'restless legs' (RLS). This was the weirdest feeling I've ever had. And it affects you most when you are ready to sleep at night. Your legs start to shiver uncontrollably. If you try to hold it down, your entire body would pulsate. Effectively, the RLS did not allow me to sleep a wink for 8 nights. Driving to work was becoming difficult. Working a full day was requiring multiple cups of coffee to stay awake. The RLS got worse to the level that my legs would vibrate even while sitting. I informed Dr. RR and he recommended I start on Requip. He also told me that there was no guarantee it would be effective and that I should consider dialysis. The RLS was due to the toxicity in the body and will need to be removed.
Since the dreaded 'D' word was spoken and I knew it would be life-changing for me I started to consider what I could do diet-wise to lower the BUN. I began with the simplest thing I could do right way. Stop eating chicken. I would eat chicken in the form of sandwiches or wraps whenever I could. Chicken was my main form of protein now that beans and lentils were out due to the K or the P controls. Cutting out chicken made the difference in the BUN which dropped to 78 and after 3 weeks of talking the Reuip I stopped taking it and the RLS also went away. Good riddance. Because, the Requip would get the night's sleep I needed but also made me a zombie during the day!! Also, 1 les meds for the day was better.
Cutting chicken meant that I had to supplement my protein some other way. I resorted to having egg-whites (egg yellow has the P, avoidable). However, over a period of two months I started to feel weaker due to the reduced protein in my diet. I continued to have whey protein and egg-white which would still ad up to only a third of the daily value. This along with the reducing Hb was making me weak and tired. It was noticeable.
The good news was that my brother, Rajesh, had already getting himself tested at RUSH as a potential kidney donor and his HLA tests were already known to be a good match. This was around the time when the dreaded 'D' words were first spoken by Dr. RR. But there were many more tests to be done before he is officially approved. Since he was in San Jose, CA, Rajesh's blood tests were done there and results were sent in to RUSH. It was a slow process and he was following it up efficiently. Meanwhile, Dr. RR felt that since dialysis was imminent and this would mean frequent follow-up with the nephrologists he wanted me to see another nephrologist closer to home. Dr. Dodhia was Dr. RR's student at RUSH and was referred and in-network with my insurance. Dr. Dodhia gave me some sights into the types of dialysis. There were two main types based on where the dialysis could happen- in-center (hemo-dialysis) or at home (peritoneal). He also put the fear of kidney disease as to what could happen if I delayed the dialysis- endocarditis (infections in the heart muscle), or neurologic symptoms. I tried telling him that other than the recent RLS and some breathlessness I had not bothersome symptoms. I felt he was a panic-monger but then I was biased. He was simply recommending based on his experiences with CKD patients.
Dr. Dodhia asked me to consult with a surgeon to get a PD catheter implanted. I kept that appointment and told the surgeon that I had tickets to go to India for a month and the surgery would come in the way. She was ok with scheduling the surgery at short notice if I needed it. I would keep her informed. One of the questions in relation to CKD she asked was 'are you making urine'. I was. One of her concerns was with my bleeding tendencies due to hemophilia. I realized- perhaps she has not done surgeries on hemophiliacs. The next time I met Dr. D he wanted to, again, have the PD put in this time by a surgeon at RUSH. I pushed back again saying that I was feeling better with no RLS, and my BUN and creatinine was better (the 'no chicken' changes). Meanwhile, Rajesh was to visit RUSH for a personal meet with the transplant team and get more tests completed. Things were looking good and I knew I just had to hang in there with my diet and my routine tests. You can follow Rajesh's experience as a he went through his workup at RUSH in his blog.
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