Day 62 - 2nd Month Post-Transplant Update

Image courtesy of medscape.com

Today is the second month of my new life, having received a kidney from Ninette, my wife, last July 25. What do young people call this occasion? A monthsary?

I went to see my nephrologist yesterday as a follow up on the oral steroid pulsing he started me on 4 days ago.(See previous post) I had a Renal Allograft Doppler Ultrasound done plus blood tests: Creatinine and BUN. Both the neph and I are happy since the results indicate that I am responding very well to the oral steroid pulsing. 

The Doppler Ultrasound did not show any adverse abnormalities and my blood numbers have improved a lot. My Creatinine level went down to 1.9 ml/dL, my best number so far after the transplant 2 months ago. And there's no need for me to be admitted for steroid pulsing via IV.

I'll stay with the current Prednisone level of 60mg per day to check this mild rejection episode and will see the neph again after a week. Then, hopefully, I can again be weaned from steroids. Among the common side effects of high-dose Prednisone are: mood swings, irritability, thrush, increased risk of infection, joint discomfort, high blood sugar, "moonface", acne, high blood pressure, increased appetite, weight gain and fluid retention. So the sooner the dosage is decreased, the better.

Day 58: Alarm Up!

It was rather a busy week for me doing blood tests and consulting with my nephrologist. My serum creatinine level results show an increasing trend contrary to what was expected. And there is a need to identify what is causing it.

My usual weekly lab tests include

1. Creatinine - indicator of kidney function; an elevated creatinine level signifies impaired kidney function
2. Complete Blood Count - used to evaluate overall health and detect a wide range of disorders; abnormal increase/decrease in cell counts indicate that there is an underlying medical condition that calls for further evaluation 
3. BUN(Blood Urea Nitrogen) - measures the amount of nitrogen in the blood that comes from the waste product urea which is passed out of the body via urine; if kidneys do not remove urea normally, BUN level rises
4. Lipid Profile - measures levels of lipids/fats, including cholesterol and triglycerides; it assess risk of developing cardiovascular disease or to monitor its treatment
5. FBS(Fasting Blood Sugar) - indicates the amount of glucose/sugar present in the blood; levels outside the normal range may be an indicator of a medical condition, diabetes in particular  
6. Urinalysis - checks different components of urine, a waste product produced by the kidneys; minerals, fluids, and other substances from blood are passed in the urine; what you eat, drink, how much you exercise and how well your kidneys work can affect what is in the urine; it helps find causes of symptoms of health problems one may have
7. Hemoglibin A1C - diagnoses Type 1/Type 2 diabetes; gauges how well diabetes is managed; reflects the average blood sugar level for the past 2 - 3 months; the poorer blood sugar control, the higher risk of diabetes complications
8. Potassium - detects concentrations that are too high(hyperkalemia) or too low(hypokalemia); hyperkalemia may indicate kidney disease
9. SGPT- ALT (Serum Glutamic-Pyruvic Transaminase - Alanine Aminotransferase) - give doctors important information about how well the liver is functioning and whether a disease, drug, or other problem is affecting it 
10. CYA C2 BY CMIA - monitors immunosuppresant/anti-rejection drug levels for management of organ transplant patients; levels below the range indicate lack of immunosuppresant drug dosage, higher than range numbers indicate drug over toxicity

Since the transplant, almost all my numbers have improved and most of them are within the normal range now except for BUN, Creatinine and CYA which needed tweaking by increasing or decreasing medication dosage. Weekly neph consultations are important to monitor symptoms of rejection or infection, both being the banes of transplant patients.

The neph is positive that the increase in creatinine is not caused by rejection or infection because I am asymptomatic of both. No fevers, no edema, no decrease in urine output, no cough/colds, no pain in the graft area.

My anti-rejection drug range is 1000 - 1300 nanograms/milliliter. The table shows my CYA levels and Creatinine the past month:

Date	Cyclosporin Dosage mg/day	CYA C2 nanograms/milliliter Range 1000-1300	Creatinine milliligrams/deciliter Range 0.5-1.3
13 Aug	250	366.5	2.1
20 Aug	300	721.2	2.3
03 Sept	350	994.1	1.9
18 Sept	350	2538.7	2-4
21 Sept	250	1018.6	2.5

            
Other possible causes of increased Creatinine are dehydration, diet excessive in protein and strenuous exercise. I take lots of water, my diet is well-balanced and my exercise consists only of toing and froing an 8-meter carport for 20 - 30 minutes on days when it's not raining. The task now is to identify what causes these irregular levels. 

Therefore I'm in for more visits to the lab and neph this coming week. I'll do repeat Creatinine and BUN tests plus a Doppler Ultrasound of the Renal Graft on Tuesday. To further isolate the results, I was ordered to a low-protein diet and to stop exercising for the meantime.

Meanwhile, just to rule-out rejection, I am placed on a pulsed infusion of oral Prednisone, an increase from 20 to 60mg/day. If the test result still indicate a rising Creatinine level, I may be again confined so intravenous pulsing can be administered. Of course I wouldn't want that. Hopefully, it doesn't happen. 

The journey continues.          

Update + Gratitude

Day 43, post-transplant and I am feeling great. My weekly blood results show a remarkable improvement compared to when I was in dialysis and immediately after the transplant. Just to summarize some relevant numbers:

	Pre-transplant	2 Weeks Post-KT	Most Recent	Normal Range
Hemoglobin	10.2	9.7	11.9	12 - 16 g/dL
Potassium	6.20	5.20	4.20	3.5 - 5.10 mmol/L
Calcium	1.90	2.15	2.28	2.2 - 2.55 mmol/L
Creatitine	14.4	2.3	1.9	0.5 - 1.3 mg/dL
CYA C2 BY CMIA		366.5	994.1 ng/mL	Target: 1100

     
Also, urine output is ideal with no traces of blood or proteinuria. Ninette, my beautiful, generous and ever-loving wife and donor, is doing great with all her test results within ideal levels. What I'm watching for now is on managing NODAT(New Onset of Diabetes after Transplantation). The neph said this will taper down slowly as the doses of steroids are reduced. I should also guard against weight gain and developing a moon-face.

Staying home and going out only once a week and only to see the doctor is not easy. You gotta find ways of killing time. I watch TV and DVD's, read novels and the paper, and dabble in social media. For exercise, a walking regimen, back and forth, using the length of the garage. When the wonlds(cholecystectomy and KT) have completely healed and I do not anymore feel the swelling and numbness in the area, I will setup my cycling trainer and start spinning again; something I haven't done in nearly a year. After another 45 - 50, days, and I shall be cleared to go out of the house and resume more regular activities. But to get back to work, the neph recommended another 4 months. 

I would like to dedicate this next part of this post to everyone,; family, friends and friends of friends, colleagues, medical and hospital staff… everyone of you who supported us in this quest for a new life.

1. The Jesuit community in Ateneo de Manila University and Xavier School, who offered our petitions during their masses; Fr. Ben Nebres who answered Ninette's 4:00am phone call and prayed with her at the time the doctors had to open me up again to evacuate the bleeding.
2. The Ateneo and Xavier communities who included, and continue to include, us in the daily mass intentions.
3. Frs. Ari Dy, and Johnny Go of the Society of Jesus.  
4. Ninette's colleagues and friends in from the Ateneo Math Department; Ninette's close friends: The 'Searchers'. 
5. Ninette's graduate students past and current; Fr. Eko Budi Santoso, SJ, who visited and prayed for and blessed me in the ICU and after.
6. My Xavier School colleagues, especially the NExT Team for bearing some of the weight due to my absence and for the prayers.
7. To my sister-in-law Pica, her daughter Lysyl, and Louren who travelled from Bacolod to be with us during the time when both Ninette and I were confined.
8. To my sister-in-law Elgee, and Ben who helped us to do most of the hospital legwork and transactions during our confinement.
9. My Kuya Noel, the De Las Peñas' in California who helped in prayers as well as the finances.
10. The Nono's, my cousins for the moral support.
11. The Peña's who spared some time out of their busy schedules to visit.
12. Our UP friends Joey, Marian, and Agnes and all the others who have extended their support.
13. Benny Lim and Xavier School Batch 2003... you surprise me. Thank you very much.
14. The Coyiuto's and Revita's for their generosity. 
15. Facebook and Twitter friends from all over the world who flooded my timeline with prayer pledges and encouraging words; we were overwhelmed with all your responses.
16. To Claudette, my caregiver, who took care of me from the time I was released from the ICU until being discharged. 
17. Our attending physicians who took, and continue to take very good care of us: Dr. Alberto Frederick Celestial IV, Nephrologist;  Dr. Sergio Simangan, Transplant and Vascular Surgeon;  Dr. Nelson Patron, Urology Surgeon; Drs. Dodee Niño Rigor and Rody Sy, Cardioligists; their fellows who respond to our immediate needs when the attendings are not available. 
18. The ICU and 3C nursing staff who displayed competence and professionalism as well as their genuine concern, warm smiles and soothing presence. 
19. To Robynne for the love.
20. To Ninette with whom I will be forever grateful.       

This list is by no means complete. I might have missed someone. Please remind me. We'd like to express our appreciation to all of you.
    
Thank you for all your prayers… singly and collectively, the most powerful reason I was able to pull through. Maraming Salamat po.  

Photo credits:

sono-system.com

thefellowship.info

flickr.com/photos/roland 

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

Live from National Kidney and Transplant Institute

This is the eve of the transplant procedure. The doctors told us we are ready. We feel we are; physically, emotionally and spiritually. But that doesn't mean that we are fearless. As the hours diminish toward the 7:00am schedule, my fear increases. I do not know how Ninette is coping. We are isolated from each other in separate hospital rooms. Maybe writing this is my way of coping.

The past 3 days were spent to dull my immune system. I took more than 40 pills a day. And I felt the effects; elevated BP, warm feeling but no temperature while feeling cold outside, drowsy, frequent naps but no long sleep, slurred speech, stammering, some mild hallucinations. 

But we're a GO! Will update as soon as I can.

 

Happy Birthday

I turn 51 today. And I am starting it with an early morning, as in 6:00am, hemodialysis session at the center. My neph told me to move my session, which was originally scheduled Saturday nights, to Sunday, and the only available slot is 6:00am. This adjustment is made to prepare for the much anticipated kidney transplant procedure this coming Thursday, 25 July. For those who do not know, I am getting a new kidney courtesy of my lovely wife, Ninette. 

After the Ethics Committee approval two weeks ago, we were busy preparing for our double confinement. I'm sure it will be a management nightmare with both of us being in hospital. Hopefully, we will be able to pull it off with the help of some family and friends.

Tomorrow, I check in to hospital and begin my induction immunosuppression. By transplant day, I will have no immune system to decrease chances of rejection. Ninette, on the other hand, will check in a day before the procedure. I'm not sure if I'll be allowed visitors, but I'm not hopeful regarding that. Maybe one at a time, must wear a mask, and from a distance. 

I may be starting my birthday in the center, but this is one, if not the most, joyful of birthdays. 

Approved

Without any fanfare whatsoever, I received a call from the transplant coordinator whilst reading the action-packed Chapter 47 of Dan Brown's Inferno. Ninette(my lovely wife and willing donor) and I were in the lobby of the NKTI waiting to be called in for an interview by the Ethics Committee. One by one the prospective donors and recipients were called in to the conference room. I asked the staff in charge of cueing in the applicants when our turn will be. She said we were next in. So we waited in anticipation. We were ready and excited to meet and face the committee. We even power dressed for the event.

Then my phone rings… "Sir, You may now leave, the ethics committee has approved your transplant."

Weeks, months even, prior to this, Ninette and I underwent a series of tests to clear us for the transplant. We just need to undergo 1 more blood cross-match repeat test, and urinalysis and chest x-ray for me to rule out current infections. Then my admission to hospital will be on the 22nd; Ninette's will be the 24th. Procedure on the 25th. Of course this is barring any complication.

The next 2 weeks before my admission, I need to guard against infections and other illnesses. If I get even just a sore throat, all dates will be moved. Don't be surprised to see me always wearing mask. And If you see me without it, you have my permission to chide me. 

Family and friends' support have been keeping us positive. We thank you and ask for continued support even more in the weeks and months to come. Prayers have seen us through this and prayers will see us through more. Yesterday, I decided to drive up to Xavier School Nuvali along with Ninette and Byn(our niece/daughter). The 1.5-hour trip to the sprawling new Xavier School campus(I work in her main campus) located in Laguna was easy and enjoyable. Being a Sunday, traffic was light to and from. The main purpose was to visit the new chapel there; The Oratory of St. Francis Xavier, a.k.a. The Xavier Rock. A sort of pilgrimage to spend some quite time. I'm glad and thankful we did that.

Deadline!

The past 2 weeks went by fast. Ninette and I continued on with work up tests, seeking doctors' clearances, filling up forms and writing affidavits. One of the last doctors we visited was a psychiatrist. Interviewing us individually as recipient and donor; he asked direct, easy to answer questions to make sure we were sane enough to take on the decision to have a transplant. He will write up a psychiatric evaluation to be submitted to the hospital ethics committee. 

The NKTI Ethics Committee meets every 1st and 3rd Friday of the month. It decides which transplant cases to approve. Tomorrow, July 1st is our deadline to submit documents to this committee. It will meet this coming Friday. Basically, the required documents are the ones that show:

1. identity
2. relationship
3. consent
4. responsibiliity 
5. blood type, tissue and crossmatch
6. all work-up test results
7. doctors' clearances
8. medical report of both the donor and recipient from the lead nephrologist

Our papers are almost complete. We're still awaiting a couple of clearances and the medical report. Upon getting them, we'll have to get them signed and notarized before submission. I'm praying we make the deadline tomorrow.

It's a bloody entry

It's about blood but I promise not to gross you out.

My love-hate relationship with my Permcath continues. I spent an hour in the Operating Room last week to have my Permcath repositioned and it hurt like hell. Thy had to remove the old suture, pull the device out of an already healed wound, moved the lumen around, then sewed it back in place. Even with local anaesthesia, I still resounded with a lot of aw's and ouch's. But the succeeding hemo sessions were great; minimal machine alarm and perfect flow rate.

But I'm now seated in the Wound Care section of the NKTI to have the dressing changed again. This is my second visit to Wound Care after the repositioning. I'm having some site bleeding issues mostly movement related. I noticed that there is a new spot of blood whenever I wake up the morning. It's probably when I turn to the side in bed when the wound leaks a bit. I do not want to have a soiled dressing for fear of infection. So even if my next hemo session is 2 days away, I'm here at Wound Care.

From here, I'm going to see my neph to show him my latest blood work results and find out from him, what out next step will be. The next and succeeding paragraphs will be composed after I consult with my neph.

I finally got the results of the Panel Reactive Antibody(PRA) Specific Class I test ordered by Dr. Celestial after a positive reading was obtained when a PRA test was done 3 weeks ago. The specific test should show the percentage of Class I antibodies present in my blood. The doctor told me that the lower the percentage, the bigger the chance of a transplant. A high percentage will limit the number of possible donors and will lower the chance of a transplant. The lab told me that results will be available after a week, but it took them almost 2 to come up with the report: 

PRA Specific Class I:   0%

So that's why it took some time. I'm guessing they had to check and re-check the results since just 3 weeks ago, they submitted a positive result in that specific class. 

Now that, ladies and gentlemen, is a huge hurdle we just went over. And we're more positive about the whole transplant situation. Just a few more tests for Ninette(my beautiful wife and donor), plus a few papers/documents to accomplish, then we'll be ready to submit to the NKTI Pre-Transplant Ethics Committee. And if all goes well, we shall proceed. 

I was told that the NKTI can perform just a limited number of transplants a month; and July and August are already booked. So September is the closest? We'd rather have it done ASAP. That will be the next major chapter of this journey.

One of the things a kidney patient has to contend with is the regular needle-sticking to get blood serum samples not only for the required pre -transplant tests but also to monitor progress an all the areas of your treatment. Dialysis, diet, exercise and patient compliance usually dictate the results of blood work. I had another done recently and it showed very encouraging results in some areas and same bad results in areas where the disease rules over no matter what you do and only a transplant can improve. For those interested, here are some numbers:

	02 Feb	24 Mar	12 Apr	18 May	22 May	Impression
Hemoglobin	8.8	10.9	10.4		12.6	Very Good; almost ideal
BUN	42.13			34.99		Still high but better
Phosphorus	3.0		1.78			Still high but better
Potassium	6.90	4.69	6.20			Still very high
Uric Acid	523.42			380.67		Most improved; ideal
Creatinine	9.6	14.33	16			Still very high

       

The photo is a pin I received as a Fathers' Day gift from my wife and donor Ninette. Just some more tests and hurdles to stride over and the pin turns into a gift of life.