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.

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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 20^th 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.

Under House Arrest

The nephrologist was strict: Stay at home the next 3 months. You are not allowed to go out/anywhere but home. You are only allowed out on Tuesdays for your weekly blood extraction and check up.

I'm home, feeling much better; wounds have healed, edema gone, very much mobile and feel like I am already able to drive and go to the supermarket, drugstore, bank, hell… even the mall. But I gotta heed the doctor's order. The eve before I was discharged from hospital, my neph gave an hour's worth of lecture on post-transplant home care. He verbally outlined everything complete with examples of past patients who followed his instructions vs those who did not and what the consequences were. If he intended to scare me so that I will follow his instructions, he succeeded. 

The 2 things I must avoid during these months are:
Rejection
Infection
Of course there are other things he discussed like proper diet, living a healthy lifestyle, managing NODAT(New Onset of Diabetes after Transplantation), mental, even sexual health, etc. But his focus was on the 2 above.

Rejection
Transplant rejection is caused by the body’s immune response to foreign material. The body naturally tends to attempt to destroy encountered foreign matter. Leukocytes(white blood cells) serve our bodies very well. They identify viruses and bacteria that have entered our bloodstream and begin to eliminate them.When someone receives a transplant, leukocytes also work against the new organ. They immediately recognize the organ as foreign, and set about to destroy it. When the white blood cells are effective, this causes transplant rejection. So leukocytes have to be reduced in order to allow the new organ to do its job.

Acute Rejection
This is a sudden reaction of the body's immune system against the kidney transplant. This type of rejection is usually seen in the first year after transplant and will require hospitalization. If treated early, kidney function will usually improve. If your body totally rejects the transplanted kidney it's back to dialysis. The goal is to stop the immune system's attack on the kidney.

Chronic Rejection
This is a gradual decrease in kidney function. This type of rejection usually occurs several months or years after the transplant. Because this rejection is a slow process, dialysis may not be needed for some time. The cause of this rejection is unknown and treatment with medication is often less effective than with acute rejection.  

This is why I have to take anti-rejection medication to reduce the body's immune system response. These are expensive medicines to be taken at exact intervals in order to maximize their effect. Aside from these anti-rejection meds, I'm also on corticosteroids, blood pressure maintenance, calcium, iron, amino acids, blood thinners and a host of other pills. I call them my M&M's. All in all, I take around 35 pills a day… wait, no it has been reduced to 33 as of yesterday… doctor's instructions via SMS.

Infection
The anti-rejection drugs I take put me at greater risk for developing an infection. The most common infections after a kidney transplant are of the respiratory system and urinary tract. Infections are treated with antibiotics, anti-virus or anti-fungal medications.

Among the 33 medications that I take daily, are anti-bacterial, anti-virus, and anti-fungal medications to prevent infection especially during the first few months after the transplant. Also strict common sense instructions on:
proper hand washing
wearing a mask
avoiding contact with others who have colds/flu
practicing good personal hygiene
no pets, no plants/flowers
maintaining a well-balanced diet
all food must be cooked; no salad, no raw meats, no sushi :(
eat only freshly cooked food, no leftovers; not to eat food whose freshness is in question; keep hot food hot and cold food cold
avoid crowds, limit visitors

As a side effect of these medications, I developed NODAT or the Onset of Diabetes After Transplantation. I check my blood sugar level and record it 3 times a day before meals then I inject myself with insulin unless I get a normal reading. My blood sugar levels should improve as the dosage of corticosteroids is reduced in the next few months. Hopefully, I will just need to take maintenance medications.

I lost a lot of blood during the 3 surgeries that I have undergone and I counted 7 units of blood transfused when I was in the ICU. I think aside from that, they used up 4 bags during surgery. Because of this, my hemoglobin level is a little bit lower than normal. To help it up, I inject myself with 5000iu of Epoetin Beta 3 times a week.

Yesterday was supposed to be my check up day. I was at the NKTI Laboratory for blood extraction at 8am despite the torrential rains. But later I found out that clinic hours are suspended. So I've been rescheduled tomorrow.

Every morning, I report the previous day's stats to my neph via SMS. And he replies with his instructions, if any. He's on my speed dial… we're close like that :)

In my hospital room

I was wheeled back to a regular room after 5 days in ICU and stayed there for the next 6 days. The first 3 days I was like a baby whose every need was taken care of by somebody else… you know… sponge baths, diaper changes and all. We were lucky to get the services of the same caregiver we employed before when Ninette's 96-year old granny was bedridden(God bless her soul). Claudette was with me 24/7 those 6 days. Both my lower extremities were bloated. The skin tight and shiny. This is due to some fluid retention when the transplanted kidney did not, due to the surgical complication, produce urine right away. Even my left hand was swollen courtesy of an ICU cardio fellow who inserted an IV line in the wrong place.

My beautiful wife and donor, Ninette, was home and recuperating well. I needed to get stronger and better so I could join her at home too. I actually started a little bit of exercising(if you can call it that) when I was at the ICU. I'd do repeated plantar flexions and arm raises. So I just continued with those while in bed as I was not allowed to strain my abdominal muscles. Then I was able to seat up and feed myself. When I was able to stand and leave the bed the next day, they took out the catheter. From then, slowly, I was able to walk around the room and do more personal activities myself but always with assistance. 

When I was able to tolerate standing, the nurses would slide a heavy weighing scale everyday at 5am to record my weight. They didn't have to do that in the ICU because the bed there had it's own weighing scale. When I left the ICU I was at 80 kilos; around 8 kilos over my weight pre-surgery. That's 8 kilos of fluid retained and 8 kilos of fluid I need to pass out via urine. The next day, the nurses encouraged me to walk to the station to weigh myself. My legs were heavy as logs. Because of the low center of gravity, I felt like a Sumo wrestler just before tachi-ai. That was my first trip out of the room. And at certain times during the day, I'd make a few small loops around the quiet corridor, happy to be moving about and see other things and people. During 1 such trip, I met my neph who was on his way to see me. I thought he would be happy to see me moving about. But he told me to get back in the room and stay there. I felt like a child caught redhanded. He reminded me that I was taking immunosuppressants and that my immune system is compromised. And that hospital corridors are not safe loitering areas for me.

Although I had borderline and controlled Type II Diabetes when I was on Hemodialysis, I developed NODAT(New Onset of Diabetes after Transplant). So my blood sugar is checked and I get insulin shots 3 times a day before meals plus another shot at bedtime. This is due to the numerous medications I am taking including the anti-rejection drugs and steroids. Hopefully, this is can be reversed.

A day before my discharge, I was again wheeled to the OR where my surgeon removed the staples as well as my Permcath access. It took longer than I expected and it was a bit and several sutures before they could control the bleeding. The OR nurses were happy to see me doing quite well. They were there during my stormy episode after the surgery.

That afternoon, they brought me to the adjacent building for ultrasound. My neph just wanted to rule out DVT(Deep Vein Thrombosis) since the swelling in my lower extremities has not abated. That evening he told me that ultrasound results were clear and I was to be discharged the next day. He then gave me an hour's worth of lecture on post kidney transplant care and that I have to strictly comply with them. He gave examples of past patients who did not and what the consequences were. I had some advanced reading on that during my stay in the hospital. That helped in making me understand every word he said.

Then it dawned on me… I am not doing Hemodialysis again. If I take care of Ninette's kidney indside me, dialysis disappears forever. 

ICU Experience

It's day 15 after my double cholecystectomy and kidney transplant surgery. So far, I have been gaining my strength back little by little; following doctors' instructions, keeping a record of vital signs, input/output monitoring, etc. 

Please pardon, grammar and spelling mistakes as I am not strong enough.

If you have read the previous post that my brother, Noel composed, you would know how stormy the surgery went. But I have little or no recollection of the episode where, after the 2 procedures and was in the recovery room, I sat up and started pulling needles and tubes out of my body. All I remember was that for a brief moment, I heard frenzied voices and hands restraining me. Later my neph told me that it took 5 persons to finally hold me down. What caused that, I do not know. Even the doctors are not sure.

From that episode arose the complications. I was bleeding and they had to open me up again. My blood pressure dropped and I was intubated and breathed through a respirator and woke up in ICU. I was unaware of my surroundings, a trachea tube on my mouth making me gag, arms restrained, and dead scared. Doctors and nurses would come in the room, check on monitors and tubes sticking out of me, most of them quiet and not acknowledging my presence. All I heard were different beeps and alarms emanating from the machines. At lease that was how I felt. 

Then came the dreams and hallucinations. That was the most difficult part. And there were a lot. Sometimes I am aware of the 3 walls surrounding me; sometimes the room turns into a garage or an auditorium. I have created stories and scenarios that I believed i during that time… out of these world conspiracy theories. I had so many companions in that room. And I was scared and my heart would race.

I counted the seconds there. Sometimes I wake up thankful that I have slept dreamless. But only to look at the clock and find out only 10 minutes has past. 

Then I began to focus on the white board on the front wall. Whenever I drifted off some place, I try to focus back in to that board. And I think that helped. Since I could not speak, I asked a nurse for pen and paper. I wrote: Stop anaesthesia. I do not want to dream. The nurse said that she will relay it to the doctors. A bell was placed in my hand so I could ring the nurse if I needed something. 

At first I felt that I was just left there and not cared for. But later, when the staff became more communicative, I started to calm down. But I hated the tube up my throat.    

I was asked by a nurse If I wanted to see family, I said no. I felt that they too have abandoned me. It was only after the 2nd day in ICU(I think) that I agreed.

As the doctors would visit and talk to me, I started to understand what happened and why I was there. Why they had to intubate me. I have requested them to take out the tube. Then they weaned me out of it as soon as it was clear I was breathing on my own during the last day.

I spent 5 gruelling days in ICU. One realization… healing takes time.  

From my wife and donor, Ninette... Selfless love

To our family and friends, This is Ninette. I wish to thank you for the continuing prayers and support you have given Larry the past days. I am overwhelmed by the pouring of love and concern.

Larry is getting out of ICU today and transferring to a regular room. His vital signs are ok, though he has to be monitored very closely for any sign of infection. His heart condition has to be given full attention- his heart rate is still irregular due to a lot of factors, low calcium, hemoglobin (he lost a lot of blood due to the two operations he underwent last Friday after the transplant), and the anti-rejection meds he is taking.  

His new kidney even if it is still recovering from the trauma of these two operations, is definitely asserting its presence in its new home! His urine flow and crea level is improving.

I am doing ok. I am now recovering at home. I can move about and the pain from the incision

site is tolerable.

There are still many medical challenges facing Larry the next days, or probably weeks.

His is now getting a full dose of immunity-suppresants as part of the anti-rejection phase.

How his body will respond remains to be seen.

It is scary when I think about it. For most of my life I have been used with dealing with

mathematical preciseness and certainties, this is something beyond my control. I have to trust

Larry's doctors and the NKTI staff (who have been so generous of themselves the past days)

and lift everything to God- hindi nya kami pababayaan.

To our friends - we wont be this strong if not for your support. Thank you for continuing to pray for Larry.

To Larry, hang on there my best buddy! Remember, love will see us through and we can overcome all of these.

Here's my brother's take on things while I was in the ICU

http://aboutlifeandrunning.blogspot.com/2013/07/larrys-transplant-and-what-happened.html