What a scare

Image courtesy of emaxhealth.com

I visited Dr. Rody Sy, my cardiologist, last week. He told me to see him 3 weeks after my angioplasty. I’m happy to say that he gave me a clean bill of health from the cardiac standpoint. My next follow up with him is 6-8 weeks. He said if all goes well, he can give me clearance for the KT(kidney transplant). I just need to continue the meds he prescribed so as to make sure the stents in place will not get occluded. As I mentioned, I am on blood thinners, clopidogrel and Aspilet EC. And due to this, we cannot have the KT this early. Again, if all goes well, maybe July. Dr. Sy is such a kind-hearted man. I really appreciate everything that he has done and is doing for me. I wish I can repay his generosity one way or another. Even when I saw him last week, he looked under his desk to give me physician’s sample meds.

Since it could be possible that the KT will be in 3 months, I have to start with the work-ups again. About a month ago, I underwent an abdominal ultrasound and one of the results gave me some cause for concern. It said: Prostrate is enlarged with concretions. This was quite alarming, and I dilly-dallied on having it checked fearing the worse. Usually, men my age start to have enlarged prostrates and some develop cancer. To think that my mom passed on with cancer not 8 months ago. But, what the heck, I’m gonna do it anyway, so why not right now? So I went to NKTI and got inside the door of the first urologist’s clinic I found. 

I showed him my results. After telling me his interpretation of the same, he told me there will be 2 tests that I have to undergo. The first one was done right there at the clinic. He told me to drop my pants, and then gloved his hand. Oh my, a DRE! For those who do not now what DRE is, it’s the acronym for Digital-Rectal Exam. And I’m sure you now know what happened next. 

The other test is the PSA(Prostrate-Specific Antigen) Test. The test measures the blood level of PSA, a protein that is produced by the prostrate gland. The higher one’s PSA level, the more likely he has prostrate cancer. The urologist told me that if the result is normal PSA, then he can give clearance for the KT. So off to the laboratory I go. 

Yesterday before my dialysis session, I went to claim the result. And for a while, I was stunned. The paper I was holding said that the reference range for normal PSA is < 2 ng/mL, and my PSA level was at 2.440 ng/mL. Not knowing what it meant, I just sat there for a few minutes trying to decide how to feel. I texted Ninette(my wife) to ask her to go online to see what it meant. I couldn’t help but think that I, most probably, have prostrate cancer too... That I was not only on the big D but also have the big C. I became panicky and irritable waiting for Ninette’s reply. I also asked her, being a mathematician, if the symbol “ < “ is really the “less than” symbol. I couldn’t think straight. 

Then she replied: “...most doctors consider PSA levels less than 4.0 as normal.”

Whew! What a scare. During my dialysis session, the nephro fellow came and I showed her the result. She said, yes it is slightly elevated but she believes there’s nothing to worry about. It was only then that I started to relax. And after a few minutes, Dr. Celestial(my nephrologist) also came to see me. And I showed him the result as well. He believes my PSA is within normal levels for my age. He even said that the DRE right before blood extraction might have contributed in elevating my PSA. Whew again!

I went online to do some reading when I got home last night. And this table from zerocancer.org is one of the things I found.

Any day this coming week, I’m gonna see that urologist again and get that clearance. Well, I hope he does clear me. Hmmm, I don’t even remember his name. But I will never forget what he did to me.

     

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Tidbits

• My niece, Robynne, was with me last night in NKTI for my dialysis. With her own eyes, she saw what some of the patients were putting in their mouths while hooked up on their respective machines: McDonald’s, Jollibee and Lapid’s Chicharon.

• Our parish priest, Fr. Luke Dobles of San Lorenzo Ruiz Parish, usually call for certain groups of parishioners each Sunday to receive a special blessing. Groups usually called to the front are: birthday celebrants for the current month, or couples whose wedding anniversaries also fall on the current month. Earlier in mass today, he summoned the sick, the elderly and the disabled to come to the front to receive a special blessing. At first I hesitated, then went forward to receive the blessing. I realized that in a few years I will fall under all those categories already.

• By the way, I haven’t mentioned that we received a tip from a transplant recipient when I was still in hospital last February. He said, as a CKD patient, I am eligible to apply for a Person With Disability(PWD) Card at the Quezon City Hall. My wife, Ninette, did not lose time and gathered all requirements and applied on my behalf. I’m a card-carrying PWD. I get a 20% discount just like senior citizens. 

• I dug more into the PWD Law. I can get discounts for medicine, medical services, restaurants, local air fare, hotels, recreation centers, theatre and concert tickets among others. I can use parking slots allocated for PWD and cue up in designated lanes in banks and similar establishments. But losing both kidneys does not qualify one for disability benefit with the SSS.

• We got invited to a graduation dinner blow out last week. Ninette’s nephew, we call him Popo, got his medical degree from UST. The party was in Dad’s/Saisaki/Kamayan in Padre Faura. Such a busy buffet place that Friday night, everybody making several trips to the self-service. People kept inviting me to join them. I just kept saying no thanks. I bring my own food to places like this.

• Ever since the IJ catheter was taken off my neck. I do not get quizzical stares from strangers anymore. It is such a relief not having that for everyone to see. What I have now is called a Permcath. Surgically set in place on my right chest area, what people see(albeit not too obvious) is some protrusion the dressing makes under my shirt.

• The thing is, during last night’s dialysis session, the machine’s alarm kept going off due to low arterial pressure. Meaning the machine cannot perform with the designated flowrate since blood passing through the catheter was insufficient. So they called vascular. The Permcath was checked and rechecked and the vascular surgeon said it was working perfectly. And as an aside, whispered to me that the nurse probably just did not know what she was doing. How reassuring.  

Knockdown

Image courtesy of renalfellow.blogspot.com

It felt like it was a swing and a miss for me trying to hit that curved ball... No, more like a knockdown after that left hook. That’s what bad lab results can make you feel. That’s right bad lab results. 

At the NKTI Hemodialysis Center, we get free blood chem labs after every 20 sessions. I went to the laboratory this morning to have my blood extraction after 10 or so hours of fasting. I already had in inkling how the results would look like since just last week, similar tests were done when I had to undergo angioplasty. And my suspicion was confirmed when I received the results. And it floored me. I’m good in all departments except creatinine, phosphorus, potassium and hemoglobin. These areas are probably the most critical for persons in dialysis. My creatinine and potassium are still off the charts. 

I’m not sure how to react. Do I treat this as nonchalantly as I should because, anyway, I am not experiencing any of the uremic symptoms? Or should I be alarmed? I know that undergoing hemodialysis 8 hours a week is nothing compared to a normal person’s kidney functioning 168 hours a week. Am I under dialysed? Do I need to increase the frequency of my dialysis from 2 sessions to 3 sessions a week? I’ve gathered that in the US, hemodialysis frequency standard is 3 times a week. When I asked my nephrologist about this, he said it is because dialysis is for free in the US. But here in the Philippines, twice a week is more like it. He said that as long as I do not experience the ugly symptoms of always feeling cold, panting for breath after exerting some effort(symptoms I had before I started dialysis), then I am getting adequate dialysis. 

But still, a serum creatinine of 16 and a potassium of 6.2 despite all the effort of following the recommended diet. Will adjusting the diet again at this point help improve the result the next time around? I don’t think so. I believe I am eating properly, religiously following the nutritionist’s instructions. So what causes it to rise that high? I’m sure, if the blood serum extraction was done right after a dialysis session, the results would have looked better. So maybe this is the cycle that I have to accept: creatinine and all these other toxins build up to feverish levels until my next dialysis session. 

The thing is, I’m getting bouts of paranoia just after reading those results. What with imagining that I’m feeling the symptoms I had pre-dialysis. It’s making me listen more closely to what I am feeling now. The thing is, I’m justifying the results by conjuring up symptoms that I actually do not have. Haha! At least I know that they’re imagined.

From this (Image by cvcbundle.com)

This coming Monday, I’ll be having a Permcath inserted. It is an OR procedure that usually requires sedation. But I spoke with the vascular/transplant surgeon, Dr. Ben Purugganan, if it is possible to do it with local anesthesia(to keep the cost down) and he said yes. The only question he asked was, “Nerbyoso ka ba?” I have to to this to replace the IJ catheter that I currently have. Since the transplant has to wait for at least 3 months, I was advised to have a better/superior vascular access device than what I have now. The Permcath is supposed to be safer, more durable and is not as exposed than what I have currently sticking out of my neck. This is not for vanity. I have learned to live with the IJ catheter. If I had the choice, I will keep using the IJ. But I am a good patient. I follow what doctors advice me. Wish me luck. I hope it is not painful as it sounds/looks. 

Sorry for grossing you out. 

To this (Image by myspace.com/darkknight)

Staff, Nurses and Techs

Going to a center twice a week and spending, on the average, about 6 hours for my hemodialysis has become a routine. On Wednesdays and Saturdays, I arrive at the NKTI Hemodialysis Center at around 4:30pm and after all the other routines, get to sit on the machine and be attended to by a nurse a little past 6:00pm. The routines include charging and paying for the session and purchasing the EPO from the hospital pharmacy on my part, and retrieving my dialyser, and prepping the machine on the part of the techs and nurses. A few entries back, I spoke about my classmates, dialysis patients who are in the same schedule and time slot as I am. For this post, I’d like to focus on these nurses and technicians who work with persons on dialysis who come to the NKTI Center.

It is a big, 24-hour in operation center. I’m sure I haven’t met all of the employees there. Well, these are some of them.

Let me start with reception. They receive patients and generate the charging forms, then retrieve the patient charts and tell the techs to fetch the dialyser from stowage. Sometimes they also change the seat covers to get the chairs ready for the next user. There is usually just 1 reception clerk on duty(at least during my time slot). And she(because all of them are female) controls entrance to the center. She makes sure that you have settled the charges for your current treatment session before handing you your patient card and letting you in to the hall. She also controls the sliding doors, pushing her button when someone wishes to enter. 

It’s a busy center so it is understandable the sometimes there are delays in reception. But sometimes, it also depends on who is on duty. There are clerks who take their sweet time and make you wait before they generate the forms, etc. There may be other duties that need to be done and they attend to them first. Some prioritize patients’ needs and makes sure you start your session as early as possible. They are very efficient and you actually feel their efficiency. Others lag behind a bit. Unless you are a new patient, they usually know your last name. Generally, they’re all okay. What I’d really like though, is for them to smile a little bit more, and not reflect the look of defeat and despair displayed by most of the patients.

The technicians retrieve the dialysers from their storage area and install them onto the machines. After your session, they also dismantle all the used tubes and dispose them into special trash bins. The also make sure that supplies are available by refilling/restocking AV fistula/graft and catheter kits, as well as dialysate, water and whatever else goes into the machine. They assist nurses by checking machines when they sound off their annoying alarms. Alarms go off when the sensitive machines detect low flow rate usually due to faulty AV fistulas/grafts or catheters, low dialysate/water levels, low/high patient blood pressure, etc. It is reassuring when a tech is nearby to check on your machine when this happens. The techs too, seem to be an efficient bunch.

Now come the nurses. This is the biggest group. There seem to be plenty of them on rotation. I’ve been going to that center for 2 months now and usually I see a nurse or 2 whom I have not seen before each time I enter the hall. But most of them I know by face or first names. They all seem efficient although some would really stand out. Greeting patients courteously and chatting them up is one of their strengths. One or two go doing their duties methodically/systematically, cleaning as they go. They care that the tubes and used syringes are properly disposed of unlike others who leave some of these trash exposed on the brims of the garbage bins. They take care of cleaning machines and even floors that after a few minutes, the area assigned to them is spick-and-span. Patients arrive in waves(due to similar session time slots) so sometimes you have to wait before you get attended to by a nurse. They hook up patients to their machines one at a time and close them up after, one at a time as well. Sometimes I overhear them chiding other patients jokingly about their take out fast food and snacks, and seriously about their pre-dialysis weights. Generally, they make you feel at home and cared for. 

There’s always a nephrology fellow around at all times. When s/he is not in the hall, s/he stays in a room next door. This doctor goes around patient to patient, checking for lung congestions and swelling legs/feet. They double check patient charts and machine settings. They also troubleshoot complicated closings especially bleeding fistulas/grafts and patients having cramps or having respiratory problems. They offer in-site consultation and write up prescriptions when you need it.  

It sure is a busy center, and it can get crazy sometimes. But I like going there. Most of the time, even if you only see half their faces, you know there are smiles beneath those masks.  

Angioplasty

Have you ever stayed immobile for 24 hours? That's what I just went through. Just laid in bed, not allowed any movement for that period of time. Well, I was allowed to move 1 leg and my arms but that's it. I'm telling you... it's such a pain in the behind! I'm at the Cardinal Santos Medical Center again. This time for an angioplasty. 

I was told to be at the Cardiac Catheterization Lab at 6:00am yesterday. To save on cost, my doctor suggested that we do the procedure as an out-patient, then just get admitted after the procedure. That was just one of Dr. Rody Sy's and Dr. Harim Santos' ideas to help help me get the necessary treatment for my heart. The other was that he negotiated with the stent company to give a buy-one-take-one discount for the 2 stents that were used for the procedure. I am so thankful to Dr. Sy and Dr. Santos and the cath lab team for really taking care of me.

As I understood, 2 stents were placed; 1 in a major artery and in 1 one of it's branches. I did not feel a thing. They gave me a Valium and a Benadryl and I slept through the whole thing. Next thing I knew, the doctor was waking me to say that everything went well. Everything went smoothly and took just about an hour. Next, I was sent to hemodialysis to filter the dye that was used just as how they did it last week after the angiogram. The dye increases creatinine levels especially for ESRD patients. Hemodialysis was for 3 hours instead of 4 and no heparin was used since I was already given blood thinners so as not to clot during stenting.

After dialysis, I was wheeled back to the cath lab, again as a cost saving measure. I needed close monitoring so instead of sending me to ICU or to a room with a special nurse, the doctors just had me stay in the cath lab recovery area where I was well cared for by Dr. Santos and nurses Jay and Nanah. A big and tight dressing was placed upon the catheter insertion site in my groin area. But only after about 20 minutes of continuous manual hand pressure by Dr. Santos. The dressing was really tight. Then again, a 5-pound sandbag was placed on top of the dressing to increase the pressure. That went on for 8 grueling hours. I was not allowed to move my right leg.

They finally took away the sandbag at 9 o'clock last night. But still, I wasn't allowed to move. Only when they took away the cardiac monitor this morning, was I allowed some movement in the right leg. That's why I am able to sit up and type this. And you know, move other things as well ;)

Dr. Sy came to see me just now. I'm good to go home. Next step is to wait a couple of months, then see if we can do the transplant already. I am really thankful for persons like Dr. Sy and Dr. Santos. They really went out of their way to help me out. To all my friends, colleagues, relatives who sent their support and prayers. To Xavier School, Fr. Johnny, Fr. Ari and Fred.

This is just one one hurdle. We'll get there.

Plateau

Kaas plateau, India. Courtesy of panoromio.com

This week was like a plateau. After the angiogram last Monday, things have slowed down. Maybe due to the fact that it was the Holy Week. Like everything else, even Philippine medical services have to take a back seat for the long summer weekend everybody is yearning for. Doctors take a break and go on trips local or abroad, specialized labs/centers are closed and only the hospitals and basic emergency facilities reman open. I also, sort of, took a break. No trips, just stayed home and tried to attend/participate in Lenten activities.

Last Wednesday, just before the start of the long weekend, I went to see Dr. Celestial, my nephrologist, to tell him about my angiogram results. He concurred with Dr. Sy(cardiologist) that an angioplasty is necessary before clearance for a kidney transplant is given to me. So, it’s stop all work-ups and concentrate on the angioplasty first. As I have written in my previous entry, kidney transplant may be scheduled from 3 to 6 months after the angioplasty. Just when all the other work-up procedures are almost done. Ninette(my wife and potential kidney donor) even had her Nuclear GFR(Glomular Filtration Rate) done already, plus all the other blood labs. Even my dentist is posed to clear me already. We have to stop and just repeat most of them some other time. And only after the cardio’s imprimatur. To think that some considerable amount have been invested in the tests already...  

I too have reached a plateau in terms of weight loss. Maybe because I have balanced my caloric intake against my day-to-day activities, which have slightly dipped due to the fact that summer break has started(I work in a school). Also, this week’s activity level was quiet low since pain in my ankles have recurred, maybe because I had 3 dialysis days last week instead of the usual 2, and that could’ve tipped some chemical balance a bit. (I needed the additional session to flush out the dye that was used during the angiogram last Monday.) Therefore I gotta pick up my pace a bit and be more active so as not to gain back what I have so far lost.

This coming week, though might be a little more exciting. I am trying to schedule the angioplasty as soon as possible. So maybe things will pick up this week. We decided to have it done already. Just worry about the funds later. We’re in the middle of processing loans to augment what meager savings we have. That’s a bit of reality that we need to be reminded of. Health insurance in the Philippines gives so little. The medicare(PhilHealth) system too, is easily exhausted. 

A hospital group in India commented on my previous post. Plainly advertising that cost for angioplasty, among others, is cheaper in India. Hmmm...