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...

Thursday, August 22, 2013

Guest post by Robynne, our niece a.k.a. our daughter


Hi everyone! I'm Robynne, Larry’s niece (This introduction is eerily familiar to my greetings on his Facebook page during his confinement in the hospital), and I want to share my experience in this journey of his. I'm not much of writer, so please forgive me if this is not up to par with his writings. As you all have read, Ninong is one amazing writer. (Fingers crossed that he doesn’t click his tongue while reading my bad writing skills). Brace yourselves because this is quite long.

----------

Having a loved one sick is the worst feeling anyone can feel and seeing them struggle with it is a whole different story. You feel helpless because there is nothing you can do but to stand by and offer support, you feel angry as to why it had to be them, betrayal can be thrown into the mix too, betrayal because just when you think life is finally looking good, it doesn’t last long. These are only few of the many emotions I felt once I found out my Ninong is sick. Not just sick that can be treated by being admitted to the hospital for a few days but sick, sick if you know what I mean. He needed to undergo transplant to be okay again. To say I hate life at that moment was an understatement but then I realized, what more him? Who has always been the strong one in the household to be told you have a disease that you have no control over? So then, I stopped my pity party.

The following months after his diagnosis, things have changed around the house but one thing that hasn’t was Ninong’s independence. He was never the one to depend so much on others for his needs, if he can do it, he will. But what struck me the most was how he handled being sick. I have not seen him wallow and be all defeated like some of the sick people I have heard stories of by how they handled their sickness. He made the most out of it, starting up a blog documenting his journey, educating himself of his sickness, researching what he can and can’t eat, making the situation of him having his own 'baon' when we eat out during Sundays funny, even taking pictures of it and posting it online. He was helping himself, he didn’t let him being sick consume him and that is what I admired about him through the whole process.

Last April and May, during my summer vacation, I was able to accompany him during his dialysis sessions and saw how different he is from the other patients. Some had this defeated aura radiating off them, some have just simply given up and looks like they are just going through the motions of things. There are patients lying down on cardboard boxes outside the dialysis center and I remember asking Ninong why they are sleeping there and he said that they’d rather use the fare they will spend to go home on their dialysis sessions and in that moment I realized how lucky Ninong is that we can afford his treatment and I also realized how hard it is to get sick in this country (Don’t get me started on that because this will be a very long entry). I would always tease him after he weighs in and he’d make a remark about his dry weight going down because that means he’s losing weight. It never failed to amaze me how small amount of liquid the nurses have to take out of him compared to his other classmates, as he fondly calls them. As each dialysis session passed, I found myself looking forward to it because even though it gets boring seating for 4 hours, it meant I get to spend those 4 hours with him, enduring his nonstop teasing about the food I have brought with me or picking on something he found amusing on the telly.

Fast forward to the transplant day itself. It was probably the most nerve wrecking day of my life. Two of the most important people in my life were being wheeled into the OR and had their lives in the hands of a bunch of doctors who even with a single mistake can mean dire consequences on the both of them. Being not a very patient person, waiting for news on how they were doing was agonizing, having to sit in the waiting area for hours with no news was driving me a little insane. So when their doctors finally came out with news that everything went well, I was able to breathe a sigh of relief and thanked God for the early birthday present that they are both okay. I went home that night, happy that things went as planned not thinking that coming hours were close to my definition of hell.

I have now slightly developed a fear of waking up to the ringing of telephones being woken up on the day of my birthday to be told that Ninong had to be brought back to the OR due to bleeding. I blindly got dressed then went to the hospital and back to the waiting room that I thought I will never see again. The story Tita Pica told me as to why the complication happened shocked me. I didn’t know that the wearing off of anesthesia can cause violent reactions in the patient. Ninong becoming violent in the recovery room after the surgery led him to stay in the ICU for several days being closely monitored by nurses and doctors.

Yes, I have spent my 20th birthday in the hospital, only leaving to go to school. I felt like a bundle of exposed nerves that anything can trigger an emotional breakdown. The surprise my best friends had for me when I got to school brought me to tears even though I knew it was coming since it has been a tradition among us already, I was that emotional. I kept my emotions in check after that knowing that I should remain strong for my Tita but that resolve shattered when I visited Ninong in the ICU that night. There are just images that one cannot unsee and I was not prepared to see that. Seeing this superhero of a guy with so many machines attached to him, a tube down his throat trying to speak when he saw me became too much that I practically bolted out of his room and cried. There really should be a law that requires nurses to warn family members of those kinds of encounter. It was one hell (pardon the word) of a day. One that I am hoping and praying will not have a repeat.

Moving on, even though that image of him hunted me that night, I wasn’t able to keep myself from visiting him whenever visiting hours came. I saw the machines disappearing one by one as each day passed and him doing better, doing better to the point that the made a silly face randomly on one of my visits. Seeing that actually made my day. The doctors kept saying that he was recovering and was doing well but I couldn’t let myself rejoice just yet, he was still in the ICU. It was only when they wheeled him back to civilization aka normal room, did I let myself rejoice. He was already joking around with me and the caregiver, Ate Clau.

In the days he was in the normal room, there were still things he couldn’t do on his own and had to be help by Ate Clau. He kept saying sorry that the needed so much help from others which I didn’t quite understand but then I realized that he is not used to asking for help. It was easy taking care of him because he was not demanding, not whinny like other patients. He was once again helping himself get better by doing exercises to bring down the ‘bloatedness’ of his hands and feet, walking around his room when was finally able to walk, anxious on going home already.

Post KT care is a whole different kind of crazy. I suddenly found myself doing things I never imagined I would do like changing Ninong’s dressing to sorting out his medicines and injecting him with his insulin. I turned from a Behavioral Science student to a caregiver/pharmacist in 0.5 seconds. But I didn’t mind doing them because he is home and he is doing well. Just like his doctor said, he has maxed out his lucky breaks so everything has to be done correctly and followed properly. Now, he can do things on his own, move around, inject himself, sort out his medicines. All he has to do now is fight boredom for the next three months.

It was definitely an experience I will never forget, the last few weeks but something I don’t want to go through again. It was emotionally and physically draining for me and the rest of my family. Everything at home is slowly starting to go back to normal and is looking good, hopefully it will stay that way because I think the last few weeks has been an experience that will last us all for a very long time.
I have always looked up and admired Ninong all my life but even more so now. My respect and admiration for him has multiplied a million times (If you can quantify it) over the last 8 months. He serves as my inspiration to never give up despite hitting a rather large rock in my life.

Before I end this, I also want to say how incredibly proud I am of my Tita for donating a part of herself to her husband. To be honest, I was shocked when she told me she was donating not because I doubt her love for Ninong but because I know firsthand how duwag and lampa she is. So I would just like to give a standing ovation and slow clap for the bravest woman I know for enduring all those tests that involved needles, machines and all very high tech equipment to running errands around the house while still recovering from her operation. If donating your kidney to your husband is not a sign of true love, then I don’t know what is. And her selfless giving of it showed me that true love still does exist and not just a myth in children’s storybooks. One paragraph in this blog entry is not enough to do her bravery justice but seeing as this is already very long (I don’t want to keep you all from your activities by reading this for a long time) I kept it short and to the point.


So there you have it. My version of the last few months condensed in 3 pages of MS Word.