Life of a Dialysis Patient (Part Two)

      As months and years pass by, I saw the need for the dialysis patients and their watchers to have an association to have their rights and privileges protected; and aid them in sourcing funds for dialysis. I saw that their PHILHEALTH Dialysis package was not maximized since the hospital is charging high cost of maintenance and operating expenses as well as medical supplies. I also noticed that the 45 dialysis sessions per year package of PHILHEALTH before was not enough since at the start of the fourth quarter of the year, most of the patients were already out of funds from PCSO and the PDAF of congressmen and thereby forced to raise funds from other sources (personal or financial help from kind hearted relatives). Other un-fortunate patients with no fund sources chose to skip from their dialysis sessions. Instead of two dialysis sessions per week, they make it to only one or none at all for the week. I also observed that the Hemo-dialyis Staff of the hospital were not behaving like professionals since they are rowdy (keep chatting and noisy while on duty), less work load and seem superior to their patients (you can hear comments like: “Do not compare us to private dialysis centers because this is a government hospital. What do you expect of us?”). Sometimes they imply, especially the technicians, that something will happen if we go against them. As if their salaries and benefits are low but the truth is, they are the highest paid nurses and technicians in the province since they are employed with the Regional Hospital. Aside from salaries, they also have a commission on the total professional fees of PHILHEALTH collected for a certain period (every regular employee of the hospital receives a portion of the total value [of all the patients of the hospital] of professional fee of P300.00 per patient).

       So I decided to form a core group from dialysis patients and watchers and we made a resolution that we will establish the: Bohol Association of Hemo-dialysis Patients and Watchers (BOASHEPAWA). We had a general assembly of members and I was elected Chairman of the Board of Trustees. Putting up an association among dialysis patients and watchers is difficult since some of them were burned or frustrated from the past organizations they have joined. They are also reluctant to pay the membership fee of P100 and Annual Fee of P100. How can our association perform its duties if we have no initial fund for operating expenses? Others are simply ignorant of what is an association. 

     We prepared the required documents for registration with the Securities and Exchange Commission (SEC) to make our association have a legal personality to solicit funds and to participate in other programs and projects of the government. Preparing the documents was very difficult because you have to approach every signatory and asked them of their full name and complete address and I have to go back and forth to the SEC Provincial office for revision and additional requirements. My wife and I took the time for the documents to be notarized. After a visit to our daughters in Manila, me and my wife had the chance to go to the SEC head Office to submit our registration requirements.  This is the time when I still have water in my lungs and I have to gasp for air in order to breath after a long climb and walk on the over pass. Despite the hardships we encountered, BOASHEPAWA was finally registered with the SEC on May 9, 2013 with Registration No: CN201326623.

       Running an association among dialysis patients and watchers is difficult since our members are having dialysis and they are weak and prone to infections and other hazards like eating foods that may aggravate their condition. Hospitalization or death among our officers and members cannot be avoided. This hampers the attendance to our meetings thereby delaying our decision and policy making process. Others cannot attend simply because they live far from the city and they have to spend for the transportation expense while others are busy with their personal activities because we have to time our meetings during Saturdays when our members are finished with their dialysis. These problems were aggravated by the efforts of the HDU staff to malign the image of our association to other dialysis patients.

       Before, our members have to solicit dialysis funds from the Philippine Charity Sweepstakes Office (PCSO). They have no office in Bohol so the patients were forced to make a trip from Bohol to Manila just to get PCSO financial assistance of P20,000.00. This puts the dialysis patient on a high risk since he/she has to endure the hardship of long travel and to have patience while bearing the burden of joining on a long line of people waiting for their names to be called while processing their documents. So we at BOASHEPAWA made a Board Resolution to request the PCSO to put up a provincial office at Tagbilaran City, Bohol. Fortunately, our provincial Governor acted favorably on our request and made the appropriate coordination with PCSO. After a few months, the PCSO has put up their provincial office in Bohol and the dialysis patients were freed from the burden of going to Manila to get financial assistance.

       We also saw the need for additional dialysis sessions under the PHILHEALTH Dialysis Package. So instead of then on-going policy of only 45 dialysis sessions per year, we at BOSHEPAWA, submitted to the PHILHEALTH our Board Resolution requesting them to increase the dialysis package from 45 dialysis sessions per year to 90 dialysis sessions per year. We sought the intercession of our Governor and Congressman and after a few years, PHILHEALTH has approved our request and the dialysis patients are now enjoying 90 dialysis sessions per year within the PHILHEALTH Dialysis package.

       BOASHEPAWA has also been coordinating with various National/Government agencies like the DSWD and the Provincial Government for programs and projects that may be beneficial to our association. BOASHEPAWA has submitted a Board Resolution asking the National Government for financial assistance obtained from a portion of taxes collected from cigarettes and liquors. As a result, with the effort of the past and new administration, the financial assistance from Congressmen in the form of PDAF is now directly channeled to the Regional Hospitals and the dialysis patients are now enjoying these benefits through the Medical Assistance Program (MAP) for medicines, laboratory tests and dialysis sessions. Once our dialysis sessions under the PHILHEALTH Dialysis Package of 90 sessions per year are depleted, we need 96 dialysis sessions for patients having dialysis twice a week and 144 dialysis sessions for those having dialysis thrice a week, we charge our excess dialysis sessions to the MAP. 

      From funds solicited from good-natured owners of business establishments in Tagbilaran City, we have set-up a fund for the family of our members who have died at P1,000.00 per member. Basically, we have no more problem with our dialysis. We also arranged for meetings with the Executive Committee of the Regional Hospital which is the GCGMH for possible review of current Policies and Guidelines concerning the dialysis patients to incorporate possible amendments and to generate new, appropriate and flexible ones that will benefit our members. Now, we can say that the quality of service of the Hemo-Dialysis Staff has improved greatly although our dialysis facility still needs improvement but being addressed by the Top Management of the hospital. New buildings are being constructed to hopefully house our new first class dialysis center.

                                                                                                               (to be continued)

       

Life of a Dialysis Patient

      Life is a journey; it may take you anywhere to start a new adventure and a family of loved ones. As in any adventure, you will follow your dream, you will experience joy and sadness, success and failures; and yet you must stand for what you believe no matter what adversity you may encounter as you continue with your journey in life. Push on till your heart say you have reached the end.

     

 Before, when I hear about or see person(s) having dialysis I feel pity at the same time fearful with regret because they say that dialysis can be afforded only by the rich since one session cost five to six thousand pesos; and done one to two times per week depending on the damage of the kidneys. Not to mention the pain the patient has to go through and the long dialysis session of four hours. When my doctor in Cebu Doctors Hospital told me that sooner or later I will undergo dialysis, I began to worry about the financial burden it would bring to my family and the thought that I am not fit for dialysis and will only suffer while in dialysis. I began to be frustrated for a while but realized later that I should not worry because it is up to the will of the Lord if I could overcome my fear of dialysis; and live a new life having a mission to share to others my experiences while in dialysis for other dialysis patients to learn ways in coping up with their disease. Also, my mission may include other healthy people to be aware about the importance of their kidneys and learn ways to protect their kidneys from damage by avoiding unhealthy practices. That was five years and six months ago, I started having dialysis on September 29, 2011, and with the grace of the Lord I am still healthy in mind although not quite healthy in body but coping well.

       The first month of my dialysis sessions was entrusted to the doctors, nurses and technicians of the Hemo-Dialysis Unit (HDU) of the Gov. Celestino Gallares Memorial Hospital (GCGMH). I did not know much about dialysis then and all I can do is obey what I am told. One time, while on dialysis I experienced Hypo-tension or very low blood pressure. I had cold sweat, blurring of vision and almost passed out. This also happened in some dialysis sessions and I had darkening of my finger nails due to lack of oxygen brought about by my very low blood pressure. Now, with months and years of continuous Google search I finally found out that my tendency to have hypo-tension is due to my low sodium level in my blood, we have a monthly laboratory tests of our blood consisting of Sodium, Potassium, Phosphorus, Calcium, Blood Uric Acid, Blood Urea Nitrogen (nitrogenous waste in the blood), Complete Blood Count (CBC) to determine the level of Hemoglobin, Red Blood Cell (RBC), White Blood Cell(WBC) and possible sign of infection, Creatinine (how much blood waste) and Albumin (help in stabilizing fluid volume; lack of it will cause Edema or swelling of legs, arms and abdomen). My low sodium in the blood before was due to lack of salt in my diet (bland or not salty). I have found out that with low sodium in the blood of a dialysis patient, he/she will be prone to low blood pressure and cramping while having dialysis which is aggravated by too much drawing of fluid or water from his/her body by the dialysis machine. In my case, now I know how to set the right volume of water to be drawn from my body based on my dry weight (this is my optimum obtainable weight after dialysis where my blood pressure is normal). If I set a low water volume way above my dry weight, less water is drawn resulting to swelling of my legs and arms or stomach since my urine output is already very low. This means that I have to set just enough water to be drawn from my body. I will also know if I have set too much water volume because I feel uneasy and my toes seems very dry and they are twitching so I will tell the nurse to decrease my set goal before I experience Hypo-tension. On the other hand, high sodium level in the blood while in dialysis cause high blood pressure because the arteries and veins are constricted and the heart should exert more effort to pump the blood. 

     Before, I used to experience high blood pressure and I had Pneumonia (lung infection) in my left lung. I have to take strong anti-biotic that made me more sick and I cannot sleep well. Six hundred ml. (that was the findings of the Radiologist in my ultrasound) of water have accumulated in my left lung. I have difficulty in breathing and I have to sleep with two pillows in my back since I cannot lay flat on my back. My doctor said that I should not eat salty food. Thankfully I was given Catapres (Clonidine), medicine for high blood pressure, and my blood pressure went back to normal and there is no more water in my lungs. That experience has taught me to wear a face mask while in the dialysis room or in places where there are many people and not to eat salty foods because it can cause high blood pressure, Edema and heart disease. 

     When I had my first dialysis session in Capitol Dialysis Center in Quezon City, once in a while we take a vacation in our house in Quezon City to visit our daughters, I have seen that the doctor and nurse will adjust the sodium level in the dialysis machine (determine how much sodium to be released during dialysis) depending on the condition of the patient. In one of my dialysis sessions, I have experienced cramps and my blood sodium is low, the doctor then instructed the nurse to increase the sodium level of the dialysis machine to compensate for my low blood sodium. This is not practiced in GCGMH in Tagbilaran City, Bohol. The doctors are playing safe because the nurse or technician might set the sodium level of the machine too high or too low to the detriment of the patient. There is no regular doctor (whole day basis) on duty inside the HDU and cannot supervise the nurses and technicians; unlike in Capitol Dialysis Center, they have a doctor inside the dialysis room the whole day.

                                                                                                            (to be continued)