Diagnosed with ESRD - End Stage Renal Disease in 2010 with 28% kidney function left. In January 2013, it dropped to 5%. Started twice a week Hemodialysis in February. My beautiful and courageous wife, Ninette, came forward willingly to be my donor and we started with the work-up in March. We finally finished everything and got approval 08 July 2013. We had the procedure the 25th of the same month.

Our journey continues...

Wednesday, February 27, 2013

Nutrition and Dietetics

Image courtesy of Peter Quife - The Lighter Side of Dialysis


What is the recommended diet and nutrition practices of an ESRD or Chronic Kidney Disease(CKD) Stage V patient? Let me attempt to show here what the National Kidney and Transplant Institute(NKTI) nutritionist/dietician discussed with us while confined in hospital. But first let me tell you about the diet I followed before all these have happened.

I was overweight the past fifteen years. Tried to keep myself active but still overweight. Dieting was on and off, so I’d get a little leaner but then I’d gain all of it back again. Starting September of last year, I started a conscious effort to cut down on food intake. Weight loss was very slow, but still, I could feel my clothes were getting a little more comfortable. By December, some people have begun to notice and comment that I have lost some weight. But It was also in December when I started to feel the symptoms I described in an earlier entry. Some of the weight loss I attributed to fruits. These past months, I have been having fruit for breakfast and substituting fruit instead of snacks. I also exerted a conscious effort on cutting down on sodas and fruit juices. I still had them but only on occasion. Alcohol was not an issue because I only take a beer or two about once every two moths on the average. Instead, I had fresh coconut juice or unsweetened iced tea when I felt I wanted something other than water. Of course you couldn’t follow this diet all the time. There is the occasional binging. Overall, even before September, my food intake wasn’t far from what an ordinary Filipino my age would consume.    

All these changed when I was confined. The hospital food was bland, unpalatable and not enough. But I had to eat what came from the hospital kitchen and nothing more, the nurse said, and no fruits or fruit juices . The next day in hospital, I got a visit from a nutritionist/dietician. With handouts, she discussed with me what I can eat and what I cannot eat. They have studied the results of my laboratory work and they have designed a diet plan for me. They called it the Uremic, Diabetic, Low Potassium, Low Uric Acid Diet. So at first glance you can deduce that this is a low sodium, low sugar, low potassium and low purine diet. She tried to explain the reasons and importance of why I have to follow the diet. And here is an attempt to relay them to you. Remember, these are for persons who are on dialysis or who have some impairment in kidney function. Remember too that I am an amateur and not a trained allied medical practitioner. This is just what I have learned from the time of this condition three weeks ago. 
  1. Sodium - Causes water retention in the body. A uremic could not pass out the toxins in the body via urine. When one is in dialysis, excess body fluids are removed during the dialysis treatment and somehow, natural urine production is decreased. Regular dialysis leads to reduction or even cessation of urine output in patients. Therefore a low-sodium diet is indicated. The more sodium you consume in between dialysis sessions, the more fluid is retained. The more fluid in the body, the more ultrafiltration is required during hemodialysis and the more strain you impose in your circulatory system and more postdialysis symptoms of dizziness and hypotension.  
  2. Sugar - Although my fasting blood sugar numbers were not that bad, we’d like to keep it that way. Therefore, intake of sugary food is also controlled. Although I can still have the occasional slice of cake and ice cream, glucose intake in general must not go over the recommended daily allowance indicated for dialysis patients.
  3. Purines - Foods rich in purine should be avoided. Uric acid is filtered out during dialysis, but as I have discussed in an earlier post any significant change in uric acid levels, either up or down, will cause arthritic pain. You do not want your urate levels to be seesawing up and down by consuming purine rich food then taking them out during dialysis. Otherwise, you get unbearable joint pains. 
  4. Potassium - Because you have impaired kidney function, potassium is not processed efficiently and passed out in urination. It stays in your bloodstream, saturating it. As I mentioned,  I went on a more fruit diet the past few months. It’s fruit, for God’s sakes, who could go wrong? But as I learned later, all of that was and that I had screaming Potassium levels in my blood. That has been corrected now and therefore, the need to maintain it. So I have a listing of fruits that I can and cannot eat. All fruits have potassium but some of them have minimal content, like pineapple, grapes, apples, berries, peaches, pears, strawberries, mandarine oranges. High potassium fruits that are contraindicated are avocado, banana, oranges, mango, dried fruits. There is also a similar listing of allowed and avoid vegetables.
  5. Water and fluids - Water or fluid intake is also reduced for ESRD patients. As a rule I follow the no more than a liter of fluids a day intake. Again, even if you still have urine output, you do not want to accumulate extra fluid in your body. Otherwise there will be intradialysis swelling in your extremities and face. And it can become uncomfortable during or postdialysis.

Food intake quantity is also measured. As I said in an earlier post, you do not want to stray far away from your dry weight. There are considerable consequences. Therefore, we measure intake and are given a recommended daily caloric allowance. Protein is consciously monitored. You do not want a diet too high or too low in protein, even as dialysis patients have a higher protein allowance than nondialysis counterparts. As a rule, not more than three matchbox sized protein(fish, poultry, meat) at every meal. Of course you have to factor in other protein sources like vegetables, and adjust accordingly.

Because I have strictly followed this diet, I have considerable weight loss. They have adjusted my dry weight twice already, once after performing a BCM(Body Composition Monitor) to determine what your lean weight is as opposed to what your weight is with excess fluid. But up to now, three weeks into hemodialysis, I am still registering a weight lower than my assigned dry weight whenever I go to dialysis. I am guessing, they will have to do another BCM and adjust my dry weight accordingly soon until I plateau into my ideal weight. And I have never experienced any uncomfortable postdialysis dizziness, hypotension or muscle cramping. 

So most of my food now is home-cooked and contains no salt. Alternative flavoring by using nonsodium spices. But the good thing is that my taste buds have adapted to this new standard. I still have appetite, and I feel good. Cravings are seldom and other food do not appeal to me anymore. I mean even when there is regular food on the table, be it at home or in restaurants, I can restrain myself and avoid being tempted even for just a taste or a bite. It wasn’t difficult, I guess if you have some self discipline to start with, you adapt easily.

The hospital have perfected the art of cooking these restricted diets and the food that comes from their kitchen is more tasteful that what I get at home. So during dialysis days, I look forward to getting take out food to eat during the session from the hospital kitchen. I just specify, uremic/diabetic/low potassium, and they box up a balanced meal complete with dessert. I get a treat during dialysis days. The important thing is, even with this condition, I have improved confidence, self esteem and attitude. I feel great.

Monday, February 25, 2013

Out-Patient Hemodialysis

Image courtesy of Peter Quaife - The Lighter Side of Dialysis


Hospital discharge was painful, literally. My joints were still swollen and the pain killers they prescribed were not really doing their job. So I got a list of medications and an order for out-patient dialysis. We secured a two-day a week schedule with the dialysis center but were told to be present an hour before the scheduled session. Later I found out that this time is needed to process payment, purchase the required 5000 IU Epoetin Beta antianemic injection, retrieving your dialyzer from stowage and getting the machine ready for it’s next use. Even with that lead time, you don’t really get to start on time. So the four hours is actually more than that. My average, six to six and a half hours spent in the center each time.

You are issued a patient card. It’s like an ATM card with a magnetic tape and a microchip where information about the patient is stored. When the seat is ready, the nurse calls you in. It’s a large hall with twenty or so machines spread out and a nurses’ station in the center. There are private rooms with individual machines in one end of the hall. The other end of the hall is a big room which contains six dialysis machines. This is where I was led to. The package I have included rent for this semi-private room. It is less busy than the main hall and more quiet. Well, not really quiet since the overhead cable television sets were on and, as I would later note, were only capable of reaching GMA’s Kapuso and ABSCBN”s Kapamilya. You get a fresh linen seat cover and a blanket. Yes, it could get cold in that room. 

Card in hand, you proceed to the weighing scale, insert the patient card into the slot and weigh in. The card reader beeps to let you know that it has recorded your starting weight for that session. I was at 77.5 kilograms that day. This information is needed so that the nurse will know how much fluid to pull out during that dialysis session to get you back to your dry weight. I was told that my doctor-assigned dry body weight was 76.5 kilograms. The dry weight, loosely, is the lowest, most tolerated post-dialysis weight. It is your target weight after dialysis treatment. Therefore, you do the same weighing routine after the session. Maybe I’ll have more about this dry weight thing at a later post.

After you weigh in, you proceed to your designated machine and insert your card into the slot provided. This sends your information to the machine; patient name, treatment parameters, registered pre-dialysis weight, etc. You check to confirm that it is the dialyzer with your name on it that is installed on that machine. You wait for the nurse to get to you. Sometimes it’s a bit of a wait, the nurse may still be working on other patients who came before you. And when you are finally attended to, they dress your wound(IJ catheter area, see previous post), check your access if it is working properly, meaning, blood can freely flow in and out, and then connect the tubes. A blood pressure monitor cuff is also wrapped around an arm. And your blood pressure is initially checked. During the course of the four-hour session, your blood pressure and pulse rate are automatically checked by the machine every thirty minutes. The nurse then enters the session’s treatment variables into touch screen monitor of the dialysis machine. With that done, this is the real start of the four-hour session.

Four hours is a long time. Especially when you spend it seated on a chair and your movements are impeded. So what does one do during all that time? You can choose to sleep as the chair is quite comfortable and can be made to recline all the way, or you can watch TV, but as I said, it’s either on GMA or ABSCBN as the other patients and their companions who came before you are already watching either of the two channels. You can eat. As I have said, the center encourages eating during the session as this prevents sudden drops in blood sugar levels. I do eat when settled in the chair already. You can read. I always take some reading material along. A ‘classmate’ of mine solves Sudoku puzzles. Another plays games on her iPad. One can watch movies on a laptop or tablet. Or you can start to write about all these things happening and maybe share it online. You can chat with with your 'classmates' or their companions or with the nurse when he/she is close by and learn more about the disease and the experiences of others. You only need to shift your weight and redistribute it on the chair now and then so as not to get a sore behind. 

It is a long time, four hours. I learned to use some of it for reflection. For examen. For prayer. And it has helped. It’s me time. It forces you to slow down. It calms. Because of this, I do not mind the long sessions at all. On the contrary, I look forward to them. But who knows, I’m only on my third week of out-patient dialysis. Maybe these will take their toll. I hope not. I am fighting this. I will not be defeated by this. I will work up to get a successful transplant.

Sunday, February 24, 2013

Hemodialysis 101


Transfusion
Due to my very low hemoglobin count, I needed blood transfusion right away. I checked in the National Kidney and Transplant Institute at around 10:00pm on a Thursday. By dawn Friday, I had my first unit of blood transfused. I had a total of four units during my four days of confinement. Two transfused intravenously at bedside and the other two during dialysis.

After the first bag, I was wheeled to the Operating Room to have an IJ(Internal Jugular) Catheter inserted. With local anesthesia, the whole procedure lasted only around 20 minutes. So, I have tubes sticking out of my neck. It doesn't look so bad, the tubes are positioned so that one could wear a collared shirt and no one would notice unless you took a closer look. Others have IJ caths where the tubes are angled upwards that they need to wear scarves to hide it. Later, I found out, that the surgeon who did the procedure is one of the top vascular and transplant surgeons in the country, Benito Purugganan.     

Later that day, I had my first session at hemodialysis. The period leading to this session was one of melancholy. I dreaded this first session because, to undergo it would mean, I will have to go through this all my remaining life. It had a way of making you feel guilty. Of making you blame yourself. Your entire life flashing in front of you. It is difficult to accept. You feel out, lost, defeated, dejected. But you have no other alternative, or "You will die"(see previous post).

Strapped in, hooked up, tubes connected, the nurse told me that I might feel dizzy as most first timers do. I didn't and just slept through it. The chair was quite comfortable. Two hours wasn't that bad. I felt a bit groggy, but perhaps it was just the earlier procedure's anesthesia. I was told about the weighing in and out routine. Weigh yourself before you sit on the chair and tell your nurse how much you weigh. I was at 78 kilos before dialysis and 76.7 after that session. I felt my footing was a bit unsure when I stood up on the weighing scale the second time. They also told me to check the dialyzer installed on the machine, to make sure has your name on the label.

(Image courtesy of
wegoexp.en.made-in-china.com)
A dialyzer is a cylinder-shaped filter that acts as your kidney. It is a container of fibers that filters excess fluid and toxins from the blood. As I said, it is my external, disposable kidney. Usually, dialyzers are replaced after around ten or so uses. The center technicians flush out and cleanse the dialyzer after every use to get it ready for reuse. That is why it is important that the patient confirms that the dialyzer installed on the hemodialysis machine is his/hers. Just like when you buy a bottle of bourbon from your favorite bar. The bartender labels the bottle with your name and stows it until your next visit. Well, a poor analogy. I do not have a favorite bar and do not know how bourbon tastes like.

Later that day, my doctor told me that the session I went through was not the real dialysis yet. That it was just to prime me for the real thing. To see how I can tolerate it. That I’ll be doing my first four-hour, bona fide hemodialysis in two days time. That I can be discharged after that session and just to continue it as an out patient. So it was all resting time for me. And I felt good. More energized. More alert and less tired. More color in my cheeks. The two-hour session actually improved the way I was feeling.       

Pains
The night after my primer, I felt some pain starting in my right ankle. I ignored it at first but it was getting more intense. What’s more there was some visible swelling in the area. So I told the nurse about it and after an hour was given tramadol with paracetamol(Dolcet) for the pain. Then later, since I was compensating with my left leg and foot, I started developing pain in my left ankle and left knee too. And later I had swelling in all three of those joints. And the pain was getting unbearable. And I couldn’t even stand, much less walk, even to the toilet. And I couldn’t sleep. A slight touch of the blanket in any of the affected areas would make me scream in agony. It was really bad. The doctors continued to give me Dolcet. I would feel a little relief after two-three hours but the pain never left. Underlying. Throbbing. Savage. And I thought I had a high pain threshold. 

So it was that way for the next several days. Even when dialysis day came, up to the time I was discharged from hospital. It was bed and wheelchair. Much later, I was referred to a rheumatologist. And was informed that these arthritic attacks happen because the dialysis creates an imbalance in one’s system because of the sudden drop of uric acid in the blood. Any significant increase or decrease equals arthritic pain.(You learn something everyday.) I was given Pred 10, a steroid that worked like magic. And told to take one tablet of colchicine the morning of my dialysis days and one tablet after dialysis to prevent pain from recurring. And if it does recur, just take the Pred as prescribed.

My first honest to goodness hemodialysis went well despite the pain. I was allowed to take my meal seated on the chair. They actually recommend that patients eat during the session. They say that eating counters the possibility of sudden dropping of blood sugar levels. Yes, hemodialysis takes out the toxins from the blood. And it takes out the nutrients as well. That’s why proper nutrition is important to ESRD patients.

Next, nutrition and dietetics and out-patient hemodialysis.   

I would like to thank the following guys who unselfishly came to the hospital blood bank to donate blood for my behalf. Although some of you were turned down, I will forever be indebted. I'm not sure also of this list is complete. So if you came to the blood bank to donate or tried to donate, please let me know.

  1. Dr. Reggie Marcelo(ADMU Math Department)
  2. Rev. Eko Budi Santoso, SJ(ADMU LST, Math Department)
  3. Dr. Debbie Bautista(ADMU Math Department)
  4. Mr. Egay Bodino(XS PPO)
  5. Mr. Sandro Villar(XS PPO)
  6. Mr. Prince John Lorenzo(XS PPO)
  7. Rev. Mr. Tony Basilio, SJ(ADMU LST, Chem Department) and 2 other Jesuit scholastics 

Thursday, February 21, 2013

Symptoms and Hospitalization


Image courtesy of Peter Quaife - The Lighter Side of Dialysis

For the past month before I started dialysis, I noticed that I was always tired. That it was easy to sleep anytime and anywhere. My heart rate was almost always elevated and doing regular tasks left me exhausted. It was becoming more and more difficult to get up in the morning to get ready to go to work. Taking a bath was an unpleasant chore. It left me panting and gasping for air for a couple of minutes after. At work, the elevator was my new best friend. Two floors up or down, I get on. One floor I don’t, but always dreaded it. 

Cold. I almost always felt cold. I wore a jacket everywhere. With hoodie on in air-conditioned places. Even the car air-con in sweltering outside heat made me shiver. There were times when I’d shake continuously that my wife, Ninette, thought I had Parkinsons. It is most uncomfortable. Also, at least three colleagues noticed and mentioned that I was pallid.

Food became unappealing. I’ve been trying to check my intake and have reduced it the past several months. I lost a little weight. But fruits were a different story. I loaded up on fruits especially for breakfast. You know, jumpstart your metabolism and all that myth. So every meal was concluded by fruit. Christmastime in the Philippines is fruit time. A lot of imported fruits, mostly from China, saturate the supermarkets. Christmas parties offer several choices. So I ate fruit. Better alternative than all the starchy Christmas fares. Fruits. Who could go wrong, right? And fresh coconut juice. No soda, no fruit juices. Fresh coconut juice. Refreshing, healthy, low calorie.

So feeling all those, I was convinced I needed to see a doctor. And I went to the last doctor I saw two and a half years ago. The nephrologist at the National Kidney and Transplant Institute. I went to him on a Monday. Then had fasting blood extraction Tuesday. I went back to see him with results in hand Wednesday. Uremia, he said. Urine in blood, literally. Low hemoglobin count. Screaming creatinine and potassium levels. Five percent kidney function remaining. Dialysis ASAP. Dialysis for life. “Go home, get your things, check in to hospital.”

I had to ask the stupid question, “What if I do not undergo dialysis?” But unlike the question, the answer, albeit said calmly, was simple, common sense, loud and clear, “You will die.”

I called Ninette up, picked her up from the university, drove to my workplace to get requisite PhilHealth(Medicare) forms, then drove home to get supper and change of clothes. Like a good patient, I got myself admitted to hospital.

It is my intention to record this journey. How I am going to fare? I don't know. Will I be able to keep this up? I don't know. This disease is making me learn in a lot of ways. My thought process and my true feelings may not come out as I am no writer. I just need to do something during those eight hours of dialysis a week. So why not this?

My hospital stay and first hemodialysis experience next.