Classmates

I’ve been going to this hemodialysis center for my twice a week sessions for almost 2 months. It’s a bustling facility with a 24-hour operation. I have plenty of ‘classmates’. They come to the center at almost the same time as I do. Because of this I have made some friends and acquaintances with other patients and their companions. I am sure each have their own stories to tell, their own sufferings and struggles, their own successes, their own shining moments. I thought I’d share them.

1.  A man who used to work in highway construction in Saudi Arabia. He says diabetes did him. And all the desalinated water he drank during his 10 years in Saudi Arabia. Lucky for him the Saudi company is paying for his treatments.

2.  A woman who suffers dizziness and muscle cramps every time she’s on dialysis. I think it is due to the fact that she strays so far away from her dry weight in between dialysis days and they have to set the machine to remove 3-4+ liters of fluid from her. That’s a lot, by the way. And she complains due to the pain.

3.  A man between 25-30 comes for his late night sessions in pyjamas carrying 2 shopping bags. What’s in them? Pillows. Big ones. Snuggle up.

4.  A woman, maybe 55, quite heavyset is wheeled in to reception. Her wheelchair is stuffed with 2-3 other bags. While waiting for her turn to be called, she reaches her hand into 1 of the bags then puts it in her mouth. She‘s munching something. CHICHARON! She’s eating CHICHARON! And each time she’s there, she’s munching something. Not only before her session starts but well into her sessions on the chair and after.

5.  A BIR employee says he’s on flexitime on Wednesdays so he is off at 2:00pm for is session. Then later, during his dialyisis, his wife and 2 children arrive from work and university. And they have supper there together. It’s supposed to be not allowed, but they somehow get away with it. How sweet.

6.  There’s this 19-year old I told you about in a past post(click here). Supposed to have graduated university this month. But she had to stop attending courses this semester. Was up for a transplant already, but her pre-transplant check up disqualified her for having some pneumonia.

7.  A guy, 60 or so. Seems like he is always angry. Always complaining. Always in a bad mood. Good thing his wife is so patient. Attending to him after she gets off work. But he seems to be getting weaker and weaker each time I see him. The doctor recently adjusted his dry weight, lowering it. Has some swelling even when pre-dialysis weight is lower than his dry weight. That isn’t good.

8.  A couple of blokes like me who come to dialysis after leaving their places of work. Still in their office attire. They arrive alone bringing their own food, watch TV, sleep, then leave after their session.

9.  Physical therapists come to the center at 5:30pm. They distribute dumb-bells and  weighted velcro straps to patients and invite them to a 30-minute workout while seated complete with cadence and club music. Is nice to see that most of them participate, albeit some, only haphazardly.

10.  I cannot understand many of these persons on dialysis. They weigh in with 4-5 kilos more than their dry weight. Some of them believe that it is okay to drink or eat anything since, anyway, they will be dialysed. So the nurses take away too much fluid. Then they leave the center weak and sick instead of being more energised and feeling good. And the food the bring: hotdogs from 7-Eleven, Big Macs, Chicken Joy, Chow King lauriat meals, Binalot tapa and tocino... all high in sodium... with large Big Gulp Slurpee sodas!

11.  Most of them are in the PhilHealth package, just like me. PhilHealth covers 45 dialysis sessions a year. With twice a week sessions, that’s only for 5.5 months. What happens after PhilHealth is exhausted? We have to churn out about 10K(at the least) a week to continue regular twice a week dialysis. What happens to those who are required 3 x a week? I’ve learned that others miss their sessions and are under dialysed. Others stop coming completely. My nephrologist tells me that the mortality rate of persons in dialysis is high. But mostly because people could not afford it and stop coming to the center.

This Holy Week, join me in saying a special prayer for my ‘classmates‘ in particular and others who are challenging health conditions. As much as any other, they deserve a happy and meaningful life despite the challenges.        

Setback

Image courtesy of harrisonmedical.org

They woke me at 4 o’clock this morning. A nursing aide with a razor and a towel. So I lay there exposed while she shaved away. She took them all off. This was part of the preparation for my procedure today. They also started an IV line and extracted some blood as well as a finger prick to check my blood sugar. I’m at Cardinal Santos Medical Center where I had an angiogram. A diagnostic procedure to identify obstructions in the arteries of the heart. My cardiologist’s original plan was to do a stenting/angioplasty if they found occlusions. Stenting is an intervention where a splint is placed inside a blood vessel to relieve an obstruction. But since I wasn’t financially ready(see last post) for the cost of an angioplasty, the procedure today was purely diagnostic.

They gave me a Valium at 6:00am just a few moments before they wheeled me out to the cath lab. Upon reaching the procedure room, more preparations were done. I am not sure what they are since the Valium started to take its effect. I remember joking around with Robynne(my niece & today’s hospital companion), telling her I was high. The doctors came and told me that they are hoping the ischemia seen in my recent nuclear profusion imaging stress test was a false positive. 

It was a short procedure. Maybe about half an hour. I was asleep and awake at the same time. I could hear their voices. They did confirm an occlusion, possibly two. They told me that I needed to be brought to hemodialysis. This is due to the dye that was introduced to my bloodstream increased my creatinine levels and needed to be flushed out. So I was brought to the ICU recovery room with a dialysis machine. They packed my groin/femoral area(where the catheter was inserted) with pressure dressing. It was so tightly packed. Like a hand was continuously pressed on the area to stop the bleeding. On top of that, a heavy sandbag was placed on top of the dressing to add pressure. It was so heavy. I felt that my thigh was pinned under a very heavy object. What’s worse, I was given strict instructions not to move that leg... FOR 6 TO 8 HOURS! More than all the preparations, more than all the needle insertions, more than the procedure itself, the 6-hour stay in the recovery room was hell. That sandbag weighed like a log.

The doctors were very kind. I have told them before hand that I could not afford an angioplasty at this point. They told me they would help find alternatives. Maybe arrange the procedure to be done at the Philippine General Hospital(PGH) where it is cheaper. Dr. Rody Sy, my cardiologist, said he will try to seek help from some sources. Dr. Choa(interventional cardiologist) said he was going to talk to the stent supplier to give a discounted price. God bless these compassionate souls. They said that I needed the angioplasty before they could give me clearance for a kidney transplant. 

If the angioplasty will be done, this will set back the schedule for the transplant. Maybe even up to 6 months. After stenting, I would be given blood thinners to make sure that the blockage will not recur in the same area. They will not be able to perform the transplant on someone who is on blood thinners. The transplant will have to wait. That is how it is. We try to do the best we can. But we shall never know what is to come. So one step at a time. Maybe this is a blessing in disguise. Of course I have asked the question, countless times, why me? Why this? Then this again? Countless times. But that is how it is. 

Still ‘round the corner, there may wait, a new door or secret gate. -J.R.R. Tolkien

Kidney vs Heart

Image courtesy of chfc.uk-wuerzburg.de

Well, thank you everybody. This site has reached 1000+ hits. Furthermore, your comments and prayer pledges in Facebook is giving us more strength and faith in what we are facing. There are boulders and hills to be trounced and we’ll take them as they come. 

I am scheduled for an angiogram on Monday. So I’ll be admitted tomorrow. But I’m having second thoughts because my cardiologist said that I might also need angioplasty. An angiogram we can afford. The latter will deplete the funds reserved for the transplant. If we could afford both, there’s no question, I will do both. But it is not the case. I will have to discuss this with my cardio. And maybe need to convince him to choose the transplant too over angioplasty.

How am I going to argue my case?

1. The mortality rate of persons on dialysis is higher than that of heart attacks. Therefore I am more likely to die of kidney disease than heart disease.
2. Right now, my body lost it’s ability to cleanse itself. In between dialysis sessions, harmful toxins circulate in my bloodstream. Due to this, other organs are affected too. The transplant will bring back the ability of the body to achieve ideal chemical balance. Usually, when this happens, other organs improve in their individual functions too.
3. CKD/ESRD is irreversible. There is no cure. Dialysis is not a cure. The machine/filters only replaces the function of the kidneys. Coronary artery disease may be managed by medication. 
4. My 2D-Echo results are not that bad. I am asymptomatic. No angina. No tightening. No palpitations or abnormal rhythm. 
5. I have lived an active life. Surely there have been other transplant recipients who were less active than me. Or who had less ideal results than I do.

So how do you think I’ll fare? Are my points valid enough to convince my cardiologist that it would be right to choose the transplant over the angioplasty? My nephrologist assured me that my 2D-Echo results will not disqualify me for a transplant. Wish me luck.

This will be a short post. The machine alarm keeps sounding and I am told by the nurse to recline all the way. It’s difficult typing from a supine position.  

Habemus Donator

The past 3 days were busy days. Spending time in hospitals trying to complete the requirements for a kidney transplant and other concerns. Just today, I had ultrasound of the whole abdomen in the morning, had my IJ catheter replacement in the afternoon, and now seated for my Wednesday hemodialysis session. This place is beginning to feel like a second home. Even the security personnel manning the parking lot allows me to park in the area reserved for doctors’ vehicles. 

Now I am awaiting results of the ultrasound. I heard the doctors conversing earlier. Both kidneys with cyst, gall bladder with stone and polyp, normal-sized liver and pancreas. If there was more, I missed it. But we’ll know more when I get the findings. Hopefully, what I overheard won’t disqualify me from being considered for a transplant. There will be more tests to undergo. Right now, I have no idea if I will pass them all or, if ever, when I am going to pass them. I just need to do this. I owe it to all my loved ones, most especially Ninette.  

In keeping with current world news especially the honeymoon between the new Pope and the media, I want to also highlight, Habemus Donator! From the latin donare, meaning, ‘to give’. Yes, as previously revealed in my last entry, Ninette, my beautiful wife, has voluntarily, on her own freewill, come forward to declare that she will be my kidney donor. And that makes me immensely happy and proud of her.

I have tried to stir her away from it. I didn’t want to subject her through the whole exercise, from the numerous tests to the surgery itself and the recovery. I didn’t want to interrupt her life and career with this complication. She of all people, who is afraid of needles and has a low pain threshold. But she’s with me every step of the way. She’s so strong and brave. 

Ninette is a busy woman. Super actively involved in her mathematics research, plus advising and writing papers with her MS and PhD students, and other mathematics professors abroad, plus consulting as designer of a popular Japanese calculator brand and writing exercise books for them. She even teaches a 5th grade gifted class in ICA this week. And she returns to Ateneo de Manila this April after her sabbatical, to teach and do administrative work. I’m sure I have missed other things she is mixed up in. She’s inexhaustible. And still, even after being aware of what it takes to be a kidney donor, willingly steps forward and be part of this journey of mine, in the most meaningful way.

Did I tell you I’m immensely happy and proud of her? I am so blessed. Habemus Donator!

Shhh... Don’t tell her about this ;)

Snags and bumps but the wheels are turning

Image courtesy of kidneyschool.org

Ok. So many things are happening. And all at the same time. The buttons are pushed. Everything is in motion. Gotta go with it. And still some things crop up that makes you step sideways instead of forward.

I wasn’t able to do any writing during last night’s 4-hour hemodialysis session. Instead, I slept. This was because I was told to recline my chair fully so that blood flow through my Internal Jugular(IJ) Catheter would improve. This vascular access is beginning to fail. Meaning, there is already some difficulty of my blood passing through this access between my circulatory system and the hemodialysis machine. That instead of my regular flow rate of 300ml/min, it could only go up to 120ml/min. Any higher than that, the machine sounds off an annoying warning.

The consultants were called and I was told to get a new access before my next dialysis day. That’s in 3 days. I gotta get a move on it. It’s a known fact that the IJ catheter is a temporary access. Usually, it can be used for about 1 month. The most common cause of failure of the access is infection. But I had mine for 49 days to date, and with being very careful about it, I did not develop any infection in the area. So I have to go see my vascular surgeon then schedule a date to have it replaced. That’s like a half day gone... in an ideal world. 

The thing is my health management organization(HMO) or health insurance company, Valucare, has very stringent, even illogical and unfair, procedures for out-patient services. That what could have been done in half a day will be extended to 3 days. This is one more reason why I have been away from work most of the time. Imagine only being able to get approval for any consultation and tests/procedures from 3:00 - 5:00pm, Mondays to Thursdays? And you need to see your doctor whose clinic hours is in the morning. So instead of just going to the hospital 1 day, you need to go 2 days; 1 to get the required Letter of Authorization(LOA) approval from the hospital Valucare coordinator, and another day to consult with your doctor. If the doctor has orders for laboratory or other tests, you have to wait for the next 3:00pm when the coordinator’s office would entertain LOA requests before you can proceed to the laboratory or department to have your blood extracted or test scheduled. And you’re lucky if you call their hotline and someone picks up. It is such a pain. Such arrogant and power tripping Valucare staff. In other HMO’s you could request for an approved LOA and they will send it to you via email or fax it directly to the hospital/department concerned.

Yet another bump on the road. My cardiologist sent me a message saying that I needed to undergo an angiogram. This is after I dropped off the results of my nuclear profusion imaging test. I need to see him again to get more information about it. What’s next after the angiogram, angioplasty? I hope not. That would derail most of my plans for a kidney transplant the soonest time possible. Yes, I already have a donor. Although the tissue typing results are not really flawless, the cross matching showed encouraging results. A living, non-related donor who, at her own free will, wants to donate 1 of her kidneys to me. No other than my beautiful wife, Ninette. My feelings regarding that deserves another post.

Since there is now donor and recipient, the wheels of transplant work up is now turning, and turning fast. Time is of the essence. The transplant ethics committee of the NKTI meets every last Thursday of the month. But since for this month, the last Thursday will fall on Maundy Thursday, they will meet this coming Thursday(March 21). Surely we would not be able to comply with all the requirements before the next meeting. So we have set a more realistic goal: submit requirements for the April meeting of the ethics committee. The committee examines all documents and approves the transplant or not. They have to make sure that there is a suitable match; that the risk of rejection is manageable and they have to establish the emotional bond between donor and recipient. Without the approval of the ethics committee, no transplant will happen.

A long list of laboratory testing for both donor and recipient is ordered by my nephrologist. By the way, my nephrologist is Alberto Frederick Celestial IV of the NKTI. Ninette has to undergo a Nuclear Glomerular Filtration Rate(GFR) renal test to determine the condition of her kidneys. We have to schedule that in the coming days. Of course we would want tests/procedures to be covered by our individual HMO’s, but what we know is transplant-related work-ups are not covered. Dr. Celestial said that we could try to get approval of some of the tests. Well, hopefully we could get some of them covered. We would need to spare every single cent for the transplant.

Since I also need a clearance from a dentist, Is submitted myself for dental evaluation yesterday. It’ll be a series of 3 or more visits to the dentist. This is to make sure that there are no infections impending in the next year. My immediate goals: undergo the angiogram, get the IJ catheter replaced, finish the dental clearance, schedule Ninette’s Nuclear GFR and the other laboratory tests.

Prayers requested.         

This, that, the good, the not so good

Image courtesy of livestrong.com

1. Stress-induced ischemia in the apex and apical midventricular anterior/anteroseptal segments.
2. Adequate LV systolic function post-exercise with LVEF of 54%.

Those are the printed interpretation of the results of the Myocardial Profusion Stress Test I recently underwent. Now, those did not sound so good. At first glance, the second one might be something positive because of the word ‘adequate’. Anything adequate must be good, right? But we do not know yet. The first one though is making me a little bit scared. Ischemia means inadequate blood supply to the heart muscle. It’s time to make that appointment with the cardiologist. Also in the report, "The stress EKG showed no significant ST-T changes." With my limited knowledge, that's a good thing. It means that no significant irregular rhythm was recorded in the ST segment points of the EKG graph.

Many questions are clouding my mind. The most obtrusive being, with a stress test result like this, will I qualify for a kidney transplant soon or do I have to go another procedure to clear up any blockage? I’m really praying that it is the former. I will have more information after I see my cardiologist. For know, it’s just prayers and crossed fingers. 

4 vials of blood serum were extracted from me and a potential donor yesterday. That’s right, I have a potential donor. A living, non-related, possible donor. Anyway, we submitted the samples so that they can be subjected to tissue typing and cross matching. Basically, the cross matching  procedure involves introducing the donor’s blood serum sample to that of the recipient’s, and see if there are any antigenic reaction from the recipient’s blood. A positive reaction means that the recipient blood recognizes the newly introduced blood as foreign and therefore begins to attack it in self defense. That is not good. It further means that the donor is not a suitable donor even if s/he has good kidneys. The recipient will reject the new kidney right after the transplant.

Now a negative match result is ideal. It means, there are no antigenic reactions and the donor is most appropriate. This is one of those tests where a negative result is what you should hope for. Tissue typing gives more detailed indicators if recipient and donor are compatible. It looks at the type of antigens of both and sees if there are similarities. If they are way different, then there is no match. So cross matching is easy to achieve but tissue typing is more complicated and has many factors and therefore more difficult to attain. All the information I am giving out here comes from own readings in my attempt to understand my condition better.

I got the results today. But I cannot divulge them yet since the NKTI Laboratory made a mistake of subjecting only my blood serum for tissue typing. Instead, what they performed were just my tissue typing and the cross matching of my and the potential donor’s blood. They did not charge, and do tissue typing for the donor. That means the results I have on hand are incomplete. I am a little bit upset about that oversight. I even asked the laboratory staff if he was sure about what he was charging. The doctor’s order was clear: tissue typing and cross matching for both recipient and donor. Also, with NKTI being the premier hospital for kidney transplant in the country, I’m sure this is a common procedure. How could they miss this? It’s exasperating. Now I have to ask the potential donor to again submit his/her blood serum. And with that, need another day of waiting for the results.

I was hoping to write a better ending to this post. But with what has happened, it is impossible.

Cardiac Stress Test: Nuclear Myocardial Perfusion Imaging

Dr. Rody Sy is one of the top cardiologists in the country. When I called his secretary requesting for an appointment not more than 2 weeks ago, I was informed that due to the huge number of patients under the doctor’s care, he does not accept new patients anymore. I was insistent and tried to convince her. After all, our late grandma was Rody Sy’s patient for several years. Also, i dropped the name of the company/organization where I work for just for good measure. Luckily, I got a call back from the secretary. I was ordered to submit my latest labs as well as undergo a 2-Dimensional Echocardiogram(2D Echo) with Doppler. The procedure uses ultrasound to picture out the heart. It provides a cross sectional image of the beating heart including its chambers, valves and blood vessels. Doppler assesses blood flow in and out of the heart.

I went to my appointment at the Cardinal Santos Medical Center(CSMC) with results in hand. Also, Electrocardiogram(ECG) was performed in his clinic. As his initial findings, Dr. Sy told me that it appears that I, for my age, still had a strong heart. He asked me what physical/athletic activities I engaged in before because he guessed that I did. It’s just that my pulse rate was a little bit on the high side. So he ordered another procedure and to see him in 2 weeks or when I have the new results in hand. he was so nice he even gave me discount cards and several free samples of my maintenance medication.

2 days ago, I underwent the Myocardial Perfusion Imaging with Technetium-99m Sestamibi at the National Kidney and Transplant Institute. NKTI Diagnostic Center is the newest building the the sprawling compound with modern equipment and facilities. The courteous and efficient staff made this long and difficult procedure seem pleasant. 2 days before the test, I was given a list of instructions that included a 4-hour fast before my scheduled procedure. The instructions also indicated that any and all medication that pertains to cardiac function be on hold for 24 hours before the procedure as well, and to be in comfortable clothing especially rubber shoes as the test involves running on a treadmill. There is a choice of which agent to use, either Thallium or Sestamibi. Dr. Sy did not specify. He wrote Thallium ‘or’ Sestamibi in his order. I was told Thallium is the ideal one since the image during the scan is easier to produce and you spend less time in the ‘bed’, and because of the shorter period, is actually cheaper. But the hospital’s Thallium supply was delayed overseas as this is imported from some other country. Therefore I was left with the other alternative, Sestamibi. I was told that I needed to set aside half a day to complete the test. It was really expensive too. They asked me to bring water and soda crackers. Which is the only food I can take after the exercise phase of the test.

Upon arriving, I was interviewed by a medical intern. It was a 4-page questionnaire covering family history of illnesses to present pain felt and current medication. They then asked me to change into a hospital gown. I was in shorts and running shoes. I should’ve asked someone to take my picture. I guess I looked ridiculous. Then an intravenous line was started by the technologist. This will be where the agent will be introduced before I lie down on the scanner. After half an hour, I was called into a room where the imaging equipment was located. It consisted of a flat, narrow bed and sort of a hollow sphere similar to the picture above. I was told to lie down with arms raised overhead and told not to move for 20 minutes.The bed started moving and in a few seconds the bed was halfway inside the spherical machine. A moving object came whirring very close to my chest. Moving laterally as if taking pictures from all angles.

It was so uncomfortable that I couldn’t hold my arms in that position any longer and they began to stray from its original position. I tried adjusting my arms back slowly thinking that it might not affect the scanning. After that episode, I was told to wait for about half an hour. Water was allowed and they encouraged walking around the corridors. I did that, unmindful of the stares I got because of my ridiculous outfit. Then it was time to repeat the scan. The technologist said that because of the small movement of my arms, the scanner failed to get a clear, isolated image. So into the tube I went again. Another uncomfortable 20 minutes. It helped that the staff, doctors and technologists were positive and encouraging. An hour’s wait  and more walking up and down the corridors, and I was called to the treadmill room. 

A harness of electrodes similar to an ECG was hooked up and we started to see the blipping image of my heart rate on the monitor. Baseline blood pressure(BP) was taken and it was at 140/80. Baseline resting heart rate was around 70 beats per minute(BPM). We waited a while for the cardiology fellow to arrive before the treadmill started to turn. I was told to take long steps. It really wasn’t running but more of a brisk walk. Also I was told that the target heart rate to reach is 145 BPM. After a few minutes in a comfortable pace, I heard a beep to indicate that it was time to take my BP. Same at 140/80. Then the treadmill shifted gears to a faster pace as well as raising the incline. The beep came, 90 BPM and 150/80. After each minute the angle and speed of the treadmill changed into a more challenging pace. When I reached the target 145 BPM, they gave me a choice to stop or to continue on. I opted to continue since the discomfort I felt was minimal. When I finally quit, I think it was 153 BPM, BP 190/100. The staff were all praises and told me that I have tolerated and finished the exercise phase well. After a minute or 2, BP was back to 140/80.

Now that surprised me because about 10 years ago, i did not finish a similar stress test. Utilizing the Bruce Protocol(the gradual increasing of pace and incline on a treadmill) then, my heart rate was still moderate but my BP was already high. I did not get to finish that test and I did not undergo that again until now.

After the ‘run’ I was told I can already eat my soda crackers and drink water. An hour of waiting and it was time to take the scan again. So back to the disagreeable position for another 20 minutes. Then again for the last time. Results will be released between 3 - 5 days. Hopefully, they are positive. But that little sequence of brisk walking made me realize how I miss regular physical activity. Again hopefully, I can get back to it.  

Causes + World Kidney Day

Image courtesy of biomed.brown.edu

Some people can really be insensitive. But you would not expect one from your human resource office, but it happens. Imagine being called ‘pasaway’ just because you have ESRD and now doing dialysis. How would you feel when you just came from a 15-day sick leave and you were excited to get back to work and see your colleagues again, felling great, then someone just blurts out something that makes you feel that everything is your fault? That you are the only one to blame for all these happening? The time you spent reflecting on the matter, all the prayers for strength, guidance and acceptance, the positive resolution that you have recently formed suddenly goes down the drain. Just because of an informal, comment from a nobody, really. A few entries back, I wrote about losing self-esteem the first few days. Of the depression I felt as if there was nothing left out there to look forward to. Then the slow creeping in of acceptance. And finally the gathered strength and resolution to face this head on and see the possibilities instead of what’s negative. It was difficult albeit short. With the support of family, friends and loved ones, you begin to see and reach out for the light. Then someone, who isn’t really much of anything to you... just plain insensitive. Sorry about the rant.

Let’s talk causes. What are the common causes of ESRD/CKD? Which of these is/are the most likely cause/s of my condition? Let me delve on some of them. Again, no expert here. Just what I have learned this past month. 

1. Diabetes. Excess sugar in the bloodstream can affect the glumerulus, the tiny structures of the nephron that filters the blood and pass on waste products as urine.
2. Hypertension. High Blood Pressure causes artery damage and kidneys are packed with arteries. Nephrons lose the necessary blood supply and nutrients and over time, damaged the nephrons. In return, damaged kidneys fail to regulate blood pressure, so both contribute to a negative spiral.
3. Glomerulonephritis. This may be caused by problems with the immune system. But often, the cause is unknown.
4. Hereditary predisposition, smoking, alcohol abuse
5. Some pain medications, antibiotics and other drugs; cocktail medication

One or a combination of more contribute to chronic kidney disease.

The thing is, and not many people know this, I was hypertensive even before the age of 20. Even as a recreational distance runner then, with complete training, I always had trouble joining races where the screen you by taking your blood pressure. Even the time in my 20’s when I was obsessed with my fitness level, I had hypertension. A few years back, I was diagnosed to have borderline diabetes. So maybe a combination of those causes did me including probably cocktail medication.

By the way, March 14, 2013 is World Kidney Day. Their worldwide mission is to raise awareness of the importance of the kidneys to overall health and to reduce the frequency and impact of kidney disease and associated health problems. The National Kidney and Transplant Institute has a huge display about it in its lobby.

Transplant 101 (continued)

Image courtesy of 123rf.com

In my previous post, I said that, as a transplant recipient-candidate, I went to this orientation hosted by the National Kidney and Transplant Institute(NKTI). Attendance to the pre-transplant orientation is a must for any prospective recipient or donor transplant candidate. It ensures that all parties know what they are getting into and that they are properly informed. What requirements are expected of them. For example, the recipient must be made aware that s/he will have to be in immunosuppresant drugs after the transplant. Usually, this is for an extended amount of time, some of them even for life. This is so that the body curbs the production of antigens so that the body will not attack the foreign, newly introduced organ. Because of this, the immune system is also compromised and infections/infectious diseases maybe common if not careful. This is why a recipient is kept isolated for a period after the transplant, with limited or no visitors, and if visitors are allowed, it is a must to wear a mask. In the orientation, it was recommended that the first six months will be spent recuperating and making sure that no infections are contracted. These immunosuppresants may be reduced as time goes by but always with the doctor’s prescription.

Statistics on the success rate of transplants by the NKTI were presented. I was impressed by the numbers, over 200 transplant operations a year. Also the survival rate of transplant recipients way out do that of persons who stay with dialysis. Of course, the quality of life of dialysis persons is immensely improved after transplant surgery. Cost wise, the immediate expenses for transplant will even out with what a dialysis person would spend cumulatively  in 3 to 4 years. All indicators point to transplant as being a better option versus staying in dialysis for the rest of my life.       

On the other hand, the prospective donor should also know what is in store for him/her. A number of possible donors shy away from actually donating because of being misinformed. Some believe that the length of the recuperation period is the same as the recipients’ and that they also take the same kind and amount of medication. In fact with the advent of Laparoscopic Nephrectomy, the post-surgery recovery is reduced that some doctors dismiss it as ‘just like an appendectomy‘ with an incision only a centimeter or so in length. Maybe two weeks rest tops and the donor can get back to his/her regular routine.

Also discussed during the orientation is the responsibility of the recipient-candidate who is on the cadaver list to remain fit during the period of waiting. In case he/she is bumped up the list and called next by the hospital when a match is found, s/he should be fit to undergo the surgery. Otherwise, s/he is bypassed. It is also because of this that a recipient on the list commits to be on hand and ready to get to the hospital immediately if called. Another requirement is the submission of serum samples every month so as to update the records of those in the list and when there is s prospective donor, All these efforts are handled by the HOPE office of the NKTI. But of course, before getting into the list, you have to submit all medical as well as documentary clearances and requirements. And of course, show capacity to pay. There is the cash option as well as the Philhealth assisted option. And also the charity option for those who qualify. Ballpark fees were discussed and a recipient on cash option will need to raise around 1.5 to 2 million Philippine Pesos and be ready with the cash when s/he receives the call.

The panel was comprised of a nephrologist, a psychiatrist, a dietician/nutritionist, a rehab therapist, a social worker, an organ recipient, a kidney organ donor and a priest. The open forum that followed was a lively discussion as dialysis persons, prospective donors and companions fielded questions and contributed their comments based on their individual experiences. Because of this, we also learned a lot from fellow attendees.  

Again, I said that the wait time averages between six months to a year, but also it can be quicker than that. Hopefully, even if the NKTI is a government institution, I hope no politics/red tape/nepotism is involved and the list is handled judiciously. I once sought another nephrologist’s(from another hospital) opinion and she said that NKTI can have some politics in the way they treat the transplant list. But so far, I haven’t really picked up or confirmed any buzz about it.

Since the orientation is a requirement, attendees were given certificates. Well, I don’t claim to know all policies and procedures. These are just information that I gathered during the orientation and a month’s experience as a dialysis person. A live donor is preferred. Aside from it being cheaper, if money is not an issue, you can have the transplant as soon as you are cleared. 

Transplant 101

Image courtesy of pbfluids.com

Back when I was still in hospital, my nephrologist spoke to us about kidney transplant. He said, that in my present age(50) and condition, he is recommending that I undergo work up for a transplant. He spent an hour by the bedside patiently explaining several aspects of this kidney replacement therapy option. And there were many. There are two possibilities for a transplant; from a live donor, preferably a relation of the recipient, who voluntarily comes forward to donate one of his/her kidneys, or when the prospective recipient’s name is enrolled under the cadaver program and shall wait to be called as he/she moves up on the list and when a match for him/her is found.

A requirement for a live donor, aside being between 18 to 60 years old, is that there should be some emotional attachment/relationship with the recipient. Blood relation is preferred as tissue matching could be easily found among close kin. If not related, a friend, spouse, anybody with some close association with the recipient is allowed. Even an employer-employee relationship is acceptable. It is not true that one can ‘shop’ around for a matching kidney for the right price from a line up offered and paraded by physicians. If ever that practice existed before, well it doesn’t anymore. At least not legally. We have heard stories about individuals who sell their organs to the affluent buyer because they needed the money. I do not know if they were ever true and if it continues to exist. As long as there is a donor with a confirmed emotional attachment with the recipient, and both pass all medical clearances and have the capacity to pay, then a transplant can be scheduled.

On the other hand, when you are listed with the cadaver program, your hospital keeps your updated record in their database and your name moves up the list as others before you get their transplants. Donors are individuals who are declared brain dead but whose basal systems are still in function through life support. These may be victims of accidents, aneurysm or stroke. They can be card-carrying donors or one whose family decides to take that route. Of course this option is more expensive than when one has a live donor. There is an extra fee that goes to the donor’s family as well as for funeral expenses. Even the cost of transferring the donor from somewhere else to your hospital is charged to you. Of course your transplant team will make sure you get a proper match. Even if you were on the top or number two in the list, if the donor is not an ideal match, then someone down the line can be the recipient. You have to regularly submit lab results so the information is updated as you can be summoned anytime. According to my nephrologist the wait time is about six months to one year.

To get to be eligible for transplant via a live donor or through the cadaver list, there are very stringent requirements. You have to get clearances from about every medical specialty there is; Cardiology, Pulmonology, Gastroenterology, Neurology, even Psychiatry and Dental. And the process can be a slow one especially if you have to juggle all these around work. First, you are required to attend a half day orientation to make sure both the donor and recipient is educated on the particulars of transplant. It’s a lively discussion with a panel of doctors and allied medical personnel and even a is priest present. A very helpful open forum where the attendees could ask anything related to the disease and the transplant program.

Then you proceed to get your clearances from one physician, one test to the next. I had a chest X-ray and a 2D Echocardiogram last week. I’m scheduled to have the Rest and Exercise Myocardial Profusion Imaging test this coming week. Also, since I had blood transfusion just almost a month ago, I have to wait a little bit more before they could draw tissue for typing and crossmatching purposes. This is to make sure my system has stabilized with the four units of blood i received through transfusion and not get a false sample. Who knows, I might even have a live donor already. But we both have to work up for it, as the donor has a list of clearances to undergo too. I like it that the program is taking no shortcuts. This ensures ideal donor-recipient  matching and higher survival rates. 

Next, more on transplants.  

Some Psychology

Back when I started dialysis at the center, I met this family whose nineteen year old daughter was the patient. Our association with each other bordered on saying hello or goodbye to each other, the occasional “How are you?” and talking about what’s on the news or the weather. You know, the usual chitchat. I noticed that the girl’s access was also still an IJ catheter, usually indicating that she is also new to the condition. She’d play with her tablet, read, chat with friends or family who accompany her. Sometimes I wonder, how can someone so young be shackled by this condition? Then I see a ten year old boy, then again another one of eight years waiting for their turn to get dialyzed. 

You see all kinds. From all walks of life. Young and old, ambulant or otherwise, fit or sickly-looking, heavyset or lean. I think CKD patients on dialysis and our caregivers and companions share a certain understanding. We know what each has gone or is going through. An experience shared. A kind of bonding. Or maybe we share a common stigma. Yes, let me talk about that some more. The greatest fear I had, after the physician told me that I required regular dialysis, was not the hours I will spend undergoing that procedure, it was not the real threat of added expense to the already depleted cash flow, it was not the thought that I cannot not travel again. But the shame I will face because I am in this condition. I will be boxed and labelled as someone who is ‘sick’. It had a way of making you feel guilty and everything was your fault. Especially if you were perceived to have lived an active life engaged in fitness, sport and recreation.

But then you are bombarded with all these information about your condition, And the more you know and understand, the more you adjust to the new routine. The clinical aspects of kidney failure and dialysis, the laboratory results, the medications prescribed, the diet. As you do that, you also begin to know and understand your body more, as you are the one who feel any of the effects, good or bad, first hand. And you begin to take some control of your treatment. Unless you allow it to stay, gone is the shame you feared most as you face the world with chin high. You become transparent and could freely talk about your condition with others. The information doesn’t stop there. The idea of a possible transplant is breached and a whole bunch of information come flowing in. Blood types, tissue matches, cadaver lists, Philhealth(Medicare) packages, clearances from other specialty physicians. Sometimes, you just need to take a break. 

Going back to the nineteen year old girl, I heard through the buzz last week at the center that she was all prepped up for a transplant. That she was in the main hospital and it was just a matter of time that she gets a new kidney. Then a couple of hours into my session, she was wheeled in for her dialysis. Her father later informed me that everything was already in place when her final check up indicated fluid in her lungs. So she was disqualified for that round. And the two healthy twenty one year old kidneys went instead to two other recipients who were below her on the list.

But like the mythical phoenix, you go through the trauma, you go through the stigma. Then you do not want people looking at you like you were ‘sick’ anymore, like you were dependent on other people around you. You have to tell them that the reason for your weight loss is not because you were sick, but because you follow a disciplined diet. In earlier posts, I call myself and other people with the same condition as dialysis patients. I believe we’d like to be recognized as dialysis persons who are capable of living normal lives.