D-Day

Today, November 15, 2017, will be marked as one of the most unforgettable days in my life. A day filled with nervousness, anticipation, wrong notion, but ended up with a good result. I will tell you what I mean later but first, let me tell you what happened to me the last few months.

My Accesses
Due to the rapidly increasing level of creatinine in my blood, my doctor instructed me to undergo an AV Fistula creation procedure. He gave me the request and I went to the referred doctor immediately – Dr. Jose Yamamoto. As far as I know, this doctor is very popular and has a big name in the medical field. He is a cardiothoracic surgeon. According to what I’ve heard, he was one of the first doctors to perform a heart transplant in Asia. My Fistula was created last October 4 on my left wrist.

For curious people out there, an AV fistula is created (In layman’s term) by “shorting” your vein to your artery. This will force your “shorted” blood vessel to get bigger and larger so that it can withstand the big hemodialysis needles. So there’s no tube, hose, or anything foreign inserted in the body contrary to what others say.

A month passed and my fistula died. It failed to work. Dr. Yamamoto explained to me that it was because my veins are small and I failed to exercise my hand diligently. I was scheduled for a revision and because of my increasing creatinine levels, I was scheduled for an IJ catheter too. An IJ catheter is a tube coming out of the neck. The end of the tube is almost near the heart.

It was Monday, November 13, when my revised AV fistula was created. The procedure went smooth and fast. The surgeon played an Ed Sheeran Album while operating on me. We are all talking, laughing, and sharing stories. Stories like why do I need to go through dialysis, I’m so young for this kind of sickness, etc etc. To cut the story short, the avf revision was a breeze. The IJ is a different story. It hurts big time! All the procedure ended at 4:00 PM. We ate at Chowking and head back home.

November 14
9:00 AM. when we head out for NKTI. Dr. Chad Hizon instructed us to meet him before we go to the dialysis center. He wrote all of his orders and he instructed me to have a blood test. We went to Hi-precision Diagnostics, along East Avenue and let my blood tested. Since it’s a Holiday, the results were delayed. We have to get it the following morning. After the test, we went to St Benedict Dialysis Center. It’s also along East Avenue. We found this dialysis center because of Dr. Mike Manalaysay, a pediatric nephrologist, and a colleague in Kyani Philippines Incorporated. As we inquired about the payment, the admin staff asked for my PhilHealth. Fortunately, all the papers that I used in USTH were in me so I easily provided what is required.

D-Day
I was anxious. I didn’t sleep well last night. The fact that my IJ catheter is very painful and uncomfortable, the picture of me sitting on a dialysis chair bugged me so much. I am very nervous. We had a light breakfast, fixed ourselves, and went to St Benedict.

The receptionist at the dialysis center is waiting for me. She is all welcoming and hospitable. In fact, they are all hospitable. Maybe they are just being nice to people who are most likely at the end of their road. Anyway, I’m still nervous. I can hear the beat of my pulse and my hand is cold. I went inside the treatment area to pee since the only CR is located there. I thought to myself, as I walked passed the patients hooked up to the machine, “will I look like them in the future? Alive but as is lifeless?” Fear struck me again. Then the nurse called me. Weighed me in and prepared me.

130/80, not my usual blood pressure. It’s higher than usual. Maybe because I’m afraid? She “undressed” my IJ and prepared it. She clipped the two tubes, in my IJ and started the machine. Then the familiar sound of the machine sounded. I didn’t feel anything but I began to feel drowsy and fell asleep. I woke up when the session is almost over and it felt great! The nurse unhooked me and gave a shot of EPO. An injection to raise my hemoglobin.

My thoughts
I should not have been afraid of dialysis in the first place. It felt good after the treatment. Although my IJ is very uncomfortable, I look forward to the time when my avf will mature and can be used as an access.

What Lies Ahead?
May the Lord God help us and make the transplant possible. We are still looking for a kidney donor and we’re still raising funds for my kidney transplant. If you would like to help, please don’t hesitate to click this link. Thank you for reading my story! God bless you!

 

 

Still Undecided

Nanay, don’t listen to hearsays and gossips. In my  more than 10 years  of practice and experience, kidney transplant is the best and only option for Deo.” Chad, my doctor, told Nanay. “They don’t do transplant everyday compared to us. We do it everyday. Why would you think that the Philippine Government is willing to give PHP 600,000.00? It is because they know that the recipient will again become a productive member of the society and it will not be a waste” he added.

It’s 7:00 am and I already listed my name in the patients queue posted on the doctor’s clinic. I was the 7th on the list. Nanay and Roy were still on the road from Bataan. I decided to get a bottle of water from NKTI’s cafeteria and went to the admission lobby to kill time. The only place with TV and sofa where you can slouch 🙂 They arrived at 9:00 am.

How’s the matching so far?

Last time, Chad ordered Roy to have a blood exam and an abdominal ultrasound. These tests will determine if donating is safe for Roy. He told us that he will stop the matching process as soon as he sees even a smallest hint that donating kidney will harm Roy.

Roy showed the results to Chad and it was all good. The initial tests showed that he is safe to donate. More tests will be done to determine if it’s safe for us to undergo the procedure. Chad requested more tests and he insisted to take it here in NKTI. He also warned us that the succeeding tests would be quite pricey. He handed out the requests and told us to go to the Laboratory and inquire for the prices. It’s the start of the 2nd phase.

What to expect?

The tests Chad requested were all blood extraction tests for me and Roy. That includes creatinine, potassium, complete blood count, and medical abbreviation that I couldn’t understand. CMV Igc, HBsAg, HCV TEST/Anti-HCV, PRA CLASS I, CLASS II & MICA ANTIBODY SCREENING, HACT REFERRAL, SYPHILIS TESTING and many more.

I asked Chad if I need to be admitted for the tests, but he told us that it’s  just a simple blood extraction. Roy and I decided to do the tests on September 1st. If the results are good, we will continue to the next step, the phase 3. However, if not, we will look for another person with a good heart who wants to be a donor. Please pray for us.

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NKTI quotations for our laboratory tests. Details are intentionally blocked for  our security

How’s my health now?

My creatinine level is slowly rising. About 3.8 last July to 4.2 this month. The protein in my urine is still high even though I’m taking a medicine to lower it down. My anti uric acid medicine was upgraded from 4mg to 8mg but still, my uric acid level is high. My cholesterol and triglyceride levels are at normal. I was advised to maintain my drugs and continue the diet my renal dietitian gave me.

How’s Nanay?

Nanay still doesn’t want a transplant as an option. With the “horrors” she experienced with Tatay in dialysis, she would not want to go to that option either. But where else to go? We believe in miracles.

As Chad explained, there are only 3 options for me. 1st is a transplant, 2nd is dialysis, and 3rd is a miracle.  Since he’s a Catholic, he said to Nanay that he is not trashing the idea of miracles. He believed in it, but still, as he said it, we need to prepare. “We believe in miracles and I know it’s true, but for now we need to prepare” he added. Second is dialysis. We are preventing dialysis because it causes a number of complications, but I’m not saying that I will not go through it. If I badly need one, I have no choice but to do it.  Finally, the transplant.

Still Undecided

“I’m still not convinced on transplant” Nanay told Chad. “I heard a lot of negative stories about transplant patients and they take a handful of maintenance drugs” Nanay added.

“First, you must be convinced that a kidney transplant is the best option for Deo. Don’t listen to gossip and hearsays. In my more than 10 years of practice and experience, we are doing it every day, and they don’t.” Chad replied.

“But how about Deo’s Aunt with more than 400 creatinine? They didn’t require her to do the transplant?” Nanay fired back.

“Nanay, actually, we do the transplant with as low as 300 in creatinine level. As much as I would like to prevent Deo from transplant or dialysis, his biopsy tells us otherwise. We need to go for the transplant.” Chad replied with respect.

Nanay ended the “debate” with a cry of sadness and frustration, “Where will we get 2M PHP? Where will we get the money for Deo’s maintenance?”

We Need Your Help

As of now, we are able to raise 3% of our target amount for my transplant fund. We still need your help and donations. If you want to help us out to raise funds for my kidney transplant, click the donate button below. You can donate as low as $1! Thank you so much and God bless!

Donate Now

 

 

 

 

 

 

 

 

Where Am I Now?

For friends who read this for the first time,  my name is Deo and I have an end stage kidney disease.

Click this to know what happened

It has been 2 weeks since my last checkup.  I started to get strict with my diet again (to avoid being bashed online). Seriously,  to avoid dialysis for I am really afraid of it.

Me and my doctor’s plan is to set my operation next year, but will make the matching process as soon as possible.  We are currently in phase 1. We set it next year to give way for my wife’s pregnancy.  We have started the matching process now because we are afraid that the terms of Philhealth might change anytime soon.  

Read what happened in my latest checkup. 

So… What’s the latest?

The first phase of the matching is for my doctor to know whether it is safe for the donor to donate.  He (the donor) was advised to do an abdominal ultrasound and blood testing.  He already have the results.  We will bring it on my check up on the 30th, so my doctor could see it.

How’s my health?

As for me, I still feel good.  Almost all people that I meet say that I don’t look sick. Praise God for that. I am still working.  My job at the Global Mission Center of Couples for Christ is manageable.  The only thing that’s reminding me of my disease is the fact that I easily get tired, my foamy urine,  the occasional pain in my kidney area and the everyday reminders of Nanay to watch my diet. Lol

How’s my fundraising?

I need 2 million pesos for the transplant procedure.  As of now, we raised 3% of its. My friends from different places organized concerts,  bowlings, and a film showing to help. Friends and generous people started to donate.   As of now,  we are selling shirts to raise funds.  Check it out here.

Agape Concert Dinner
Bowling for a Cause
Tarzan Film Showing

Help that we look forward, too.

Please pray for me and my family. We are praying that me and my donor pass the PhilHealth z package. It is a very big help since it can take off 600,000 PHP from the operating cost.  Please pray for us.

Know more about PhilHealth z package here

We also look forward to the financial assistance program of DSWD in my hometown.  I will just need to complete all the requirements needed.

Lastly,  as Mike said,  rely first on solicitations, so we are doubling our efforts to do it.

You can help.

The funds we raised is still a fraction of the real cost.  May we ask for your kind donations to help us reach our goal.  If you have PayPal,  just click the donate button on the sidebar or you can click here to know the options on how to help us. (You can donate as low as 50 pesos)

Please include us in your prayers. Thank you so much.

 

 

 

 

 

“Why Do You Fight, Deo?”

Last week, my good friend, Khong, messaged me on Facebook and asked, “What are your plans now? What will you do? What are the options? Whom do you fight this battle for?” His last question retained in my mind. To whom do I really fight this battle for? There were so many reasons that I have mentioned, and here are some parts of it:

“What are your options, Deo?”

My doctor said that as of now, there are only two options, go for dialysis or opt for a kidney transplant. We decided to go for the latter. Why? First of all, because of a better quality of life it promises. In dialysis, I would be hooked to a machine that cleanse my blood for 4 hours, 3 times a week. Secondly, I’m still young and there are plenty of things I still want to do. Third, it’s my parents wish not to undergo dialysis. And lastly, my doctor suggests that it is better to have it than to choose the other one.
So what is my decision? I must go for a kidney transplant.

“So this fight is for whom, Deo?”


First of all, I am fighting for my wife and my marriage. 

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Me and my wife

I just got married to a beautiful woman in December of last year. Our marriage is very young. We have a lot of dreams and we are looking at a bright future ahead of us. I know that there’s no reason for me to surrender.  I believe that with the help of God, those dreams that we dreamt and planned together, will become a reality. I also believe that this is just a hard start and good things will follow. With the help of God, we can surpass everything.

My wife is a very strong woman. When I first knew about my disease, she’s the only one that comforted me. She stayed strong. She acted as my foundation as I slowly build mine. With that, I honor her a lot and she’s one of the reasons why I fight this battle.

I fight for Nanay

Nanay is a very tough woman. My aunts always tell me that she is the strongest of them all. However, being a wife and a mother, I know that somehow, giving her heartache, such as this, could definitely tear her apart. Tatay has been already in this situation, so why am I to join.

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Nanay and me

I can see the hardships of Nanay as she takes care of Tatay. As I shared before, Tatay is on dialysis treatment. I just can’t imagine what she could feel if I would be plugged into a hemodialysis machine, too. I don’t want to give her another set of burden, even though I know the fact, that in case it would happen, she will remain strong, and won’t show any pain to us. I cannot forgive myself if something bad happens to her, and that is why Nanay, is one of the reasons why I fight this battle.

I fight for Tatay

Tatay is diabetic and that’s the reason why his kidneys failed. As I’ve said earlier, he is undergoing dialysis treatment. Right now, he is doing the procedure three times a week. Three months ago, he just had two sessions a week, but his edema (water retention) got worse. Seeing his fight, it discourages me to go the same path he’s in right now. His skin color has changed. He is bloated. He easily gets tired. He even went cardiac arrest many times when in session.

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Tatay and me

I know that it’s hard for him and I know that it would hurt him to see me suffering, too. That is why, this fight is for Tatay, too.

I fight for my friends.
The support I get from my friends are phenomenal. The moment they knew about my disease, they offered help as soon as possible. They even mobilize themselves to help me do fundraisers. They are one of the reasons I fight this battle.

I fight for my service.
I was in the community of Couples for Christ since I was in High School. I started as a CFC Youth for Christ and now, I’m a full time missionary worker of CFC Global Mission Foundation.  I believe that God did not give me this disease if I can’t win over it. I want to serve more. I want to fight serving the Lord. If I go down, I will go down while serving Him. This fight is also for service.

Help me fight this battle, friends. I wish that at the end, it is us that wins. Help me to make my hope, our fight. 

 

When the Doctor met the Donor…and the Miracle

Sampalin n’yo nga yan Doc (Slap him Doc)!” My mother burst in anger when she knew that I didn’t fully control my diet the past few weeks. It was the Couples For Christ weeklong anniversary celebration and I was one of the service teams. In short, I have to eat the service meals for a week, making my cholesterol and triglycerides soaring high… Again.

June 28, 2016. It was my second maintenance checkup after knowing my condition. We also decided to bring Roy with us so that if he has questions about the procedure, he can ask everything he wants to know. Roy is a cousin, a brother in Christ and a good friend who would want to donate his kidney to me.

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Me and Roy

He and Nanay departed from Bataan at 5:00 AM and arrived in NKTI at around 7:30AM. I arrived there at around 8:00AM and we waited in the queue. It was 11:30 when we are called in by Miss Helen, my doctor’s secretary.

Kamusta ka (How are you)?” Chad (Richard T. Hizon. MD), my doctor, said the moment he saw me. He also greeted Nanay and Roy a good day. With no hesitation, Nanay immediately said that my cholesterol and triglyceride levels have risen. She also gave him my blood test results.

Chad browsed the test result and affirmed the numbers on it one after the other. “Hemoglobin, okaynaman. Spillage, okay din. Tumaas ang cholesterol mo. Kailangang i-maintain mo na talaga and Lypantil at saka Rosuvastatin (Your hemoglobin and spillage are okay but your cholesterol has risen. We have to get you back to Lypantil and Rosuvastatin again) he said.   “Pero kamusta ang kain mo?Nakakapagpigil ka? (Are you still controlling your diet?)he asked.

That question made me pause. I forced myself to think of something good to say, but he didn’t allow me to say anything, “Hindi! Huminto ka eh… Wag ka na… wag ka nang mag dahilan pa… Kabisadong kabisado ko na yan. Yung mga humihinto na ganyan bago sumagot, alam na yun. (No, Stop thinking of an alibi. Stop your excuses.)”

Nanay cut in and said, “Sampalin nyo nga po, Doc (Slap him Doc)” Chad continued, “Gustomo yatang ma-dialysis ng maaga eh (it seems like you want to get into dialysis early?)” “Your cholesterol and triglyceride will not rise this high if it’s only because we stopped the medicine. It is because of too much intake of food.” he continued. “Although the good news is your crea decreased. You were 4 the last time, but now it’s only 3.6”

Kidney Transplant 101

Chad wrote my meds on his prescription and I took that time to introduce Roy to him. I told him that Roy has many questions about the procedure. He stopped writing and gave us a short orientation.

“Kidney donation is relatively safe. A person can live with one kidney alone. That is why we always say on our lectures that the purpose of our other kidney is for sharing. Look at the kidney transplant patients. They only have one kidney, but still they live for a long happy life. It’s relatively safe. Nothing will change on you. You can still do the things you normally do. The only precaution we have is contact sports. We will advise you to shy away from Taekwondo or Judo or the likes.”

“I am planning to go to the gym.”

“There’s no problem in going to the gym, play basketball and any sports.”

“How about running and jogging?”

“It’s okay. Nothing will change in you. You still have the capacity to have a child and go to work. The risk of the operation is very small. The risk is less than 1%. Since the technology today is better, we will not “open” you up. We will just use a “telescope” and 2 days after the operation, you will be discharged.”

“Will it leave a scar?”

“Just a small mark.” Chad unbuttoned his polo to show his scar below his chest. “I underwent in that procedure, but I don’t know if the mark is still here.” The scar is small and unnoticeable. He got that scar due to his gall bladder. “You can still wear your bikini.”

“Will it hurt?”

“There is a post operation pain, but it’s manageable. During operation, you are on general anesthesia. One week after the operation, you can go to work and one month after, you can go the gym.”

It seems that Roy has no questions anymore, so I asked about the matching.

“Let’s start the work up. Let me run through the procedure. There are three phases. First, we will test if Roy has strong kidneys and if it’s safe for him to donate. If we can see a small sign that t donation is dangerous for him, we will stop there and look for another donor. You can do the lab tests and ultrasound at Bataan. Second phase is the matching itself and the third is the preparation for the transplant.”

Then it’s Nanay’s turn to ask.

The Miracle

“Doc if we can sustain his creatinine since it’s decreasing, let’s postpone the transplant till next year because his wife started to conceive.”

With surprise, Chad burst in joy. “Good!!! Congrats!!! Ang galing mo talaga! Bihira lang ang maka concieve na ganyan ang creatinine ha. (You are really good! It is very rare to conceive in that creatine level!).”

“It was really a miracle.” I said.

“That is why I told Deo to focus first on his wife’s pregnancy. This may stress his wife and might affect their baby.” Nanay continued.

“For me, I would beg to disagree.” Ako po, ang aim ko is as early as possible, ma-transplant si Deo oratleast ma approve siya ng Philhealth (My aim is that Deo have the operation as early as possible or at least be approved by Philhealth). Actually, the creatinine of 3 is already for transplant. Mas maganda po kasi ang pre-emptive. Ibig sabihin, hindi pa nadidialysis, itra-transplant na. (It’s better to be pre-emptive and do the transplant before dialysis.)

Chad kept quiet for a while and thought of something! “We could also do this…” He said suddenly.

If you really want to concentrate on your wife’s pregnancy, let’s do the work ups first, then lets enroll to Philhealth. If it’s already approved, and if your crea is 3 or 4 and you don’t feel anything, let’s postpone the operation till next year. Kinabahan ako. Baka maubos ang pondo ng Philhealth (I’m worried about the funds of Philhealth). The system and the scenario might change. Sayangang P600,000.00. (We might not get the P600,000.00)” – He was referring to PhilHealth’s Z package.
Know more about PhilHealth Z package here.

“Kaya for the meantime nak,  ingatan mo muna ang kidneys mo. Kung maaaring pangat nalang ang ulam mo. (For the meantime, take care of your kidneys. If it’s possible to eat only sour fish)Nanay said.

“Wag naman po. Kawawa naman si Deo. (Have pity on Deo) Chad cut Nanay. “He can eat meat and pork as what the dietician told him. Just follow your dietician’s orders.”

He gave Roy the lab and ultrasound request and he reminded me of our meeting next month to check whether his meds work. With a firm handshake to me and Roy and a nod of respect to Nanay, he affirmed us again not to worry. We got out of his clinic at around 12:00. We went home, ate lunch and brought them to GMC (Global Mission Center). They arrived home in Bataan at around 7PM.