Diagnosed with ESRD - End Stage Renal Disease in 2010 with 28% kidney function left. In January 2013, it dropped to 5%. Started twice a week Hemodialysis in February. My beautiful and courageous wife, Ninette, came forward willingly to be my donor and we started with the work-up in March. We finally finished everything and got approval 08 July 2013. We had the procedure the 25th of the same month.

Our journey continues...

Thursday, May 30, 2013

A Standing 8-Count

How do you react to something you have no control over? This is a question I ask now right after seeing my neph. I do not know how to react after some disturbing pre-transplant test results. These past weeks saw Ninette(my wife and prospective donor) and I doing lab blood work. These are very expensive blood tests not covered by health insurance. As I said previously, this is Stage 4 of a 5-stage process according to my neph. When we pass all stages, the transplant is a go. We've breezed through Stages 1 to 3 but now there's some snag.

The neph keeps a tabular record of all the tests we have undergone and all their results. Up until today, the space labelled 'Problem' remained empty. I had a positive reading in the PRA Class I antibody screening. PRA stands for Panel Reactive Antibody and is routinely done on patients awaiting organ transplantation. A positive means that I have anti-human antibodies in my blood. And, because of this, I have to undergo a deeper test called the PRA Specific Class I to determine the percentage of the population that the antibody in my blood reacts to. As well as compare it with Ninette's tissue typing and crossmatching results. Hopefully, I get a low percentage and probably the transplant can go on and I just will need a bombardment of modern immunosuppressants. If otherwise, then I am not a suitable recipient and Ninette cannot be my donor. Then it will be back to zero. 

So I gotta have this other blood work up. I asked about it, and the cost is quite staggering. But I gotta do it. Because, I admit it, the only thing that keeps me positive and going is the possibility of this transplant, and Ninette's love and generosity to give me a new lease on life. And since this is out of my control, I'm just gonna pray over this.

Some friends told me that my posts are very long. So let this be just a short one. 
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Thursday, May 16, 2013

Permcath Issues

Image courtesy of davita.com

Last night's hemo session was a bit strange. For some reason, the alarm kept sounding off. Although I've had some alarm issues some sessions ago with this relatively new Permcath, last night was a bit different. The nurse kept telling me to tilt my head or twist my neck to a certain angle to keep arterial pressure at a certain level. Last time, a tech told me to inhale deeply once in a while to get the same effect. In several of the past sessions, the nurse/tech instructed me to recline my chair all the way also to keep arterial pressure up. And yet last week, a tech told me to just lean back while keeping the chair's back less than 120 degrees. To borrow a Tagalog expression, Ano ba talaga, Kuya? I guess, there's still a lot to learn. And nurses and tech, individually, have their own techniques. I'm ready to listen and follow instructions. Anything of a smooth sailing, uninterrupted hemo session. As I have said before, that alarm is annoying.

Also last night, another patient had Permcath issues. When the nurse took off the dressing, she asked the patient, a man advanced in age, if his Permcath site got wet after his last hemo session. What prompted her to ask that question was some greenish fluid oozing out to the gauze and some tenderness around the site. (Sorry for the gross description.) The nurses conferred with each other and called the nephro fellow over. It was indeed infected and she wrote out a prescription for antibiotics. The man was seated next to me and I heard the whole conversation because everybody was speaking loudly. The old chap was hard of hearing. Around 80 or so, he would arrive at the center with a slow gait while pushing a wheelchair bearing his cane and bag. Sometimes he also shows some signs of forgetfulness especially when conversing with the staff. Good thing his son accompanies him to dialysis most of the time.

It's been said that an arteriovenous(AV) fistula is the best access for hemodialysis with the least number of complications. But you have to undergo surgery and wait around 2 months before it can be used. It probably is the best long term access for hemodialysis. I really hope I do not need to have it done and just keep using the Permcath until the(hopefully, July) transplant.

Another detail that appears trivial but is very important is the kind of shirt to wear during hemo sessions. Because my access is a Permcath, I have to wear only button up shirts. No polo shirts and tees. I forgot to wear the proper shirt one time, and only realized it when I arrived at the center. I had to make the short drive home and back just to change my shirt. Now, I make sure I keep an extra shirt in my bag or in the car.       

One of the nurses, Soledad, is spending her last 6 working days with the center. I learned that she has been accepted as a registered nurse in New York and will be leaving soon. Another one to join the ranks of OFWs(Overseas Filipino Workers). Plenty of similar stories in this center. One time, there came a visitor and she was flocked by the staff. I figured she was a nurse at the center before she went to the US for employment… Well, good luck to you, Soledad.

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Sunday, May 5, 2013

How does a kidney patient look like?

As part of clearance for a KT, I underwent ultrasound of the whole abdomen last month. The results showed some enlargement of the prostrate gland. So I consulted a urologist to make sure that the condition was not significant as to be alarmed. I filled up an info sheet just like anybody who sees a new physician. The form asked for some history, so I wrote that I was an ESRD patient seeking urology clearance for KT. The doctor was reviewing my form when I entered his office. Looking up at me, he asked, “Where’s the patient?” I replied that I was the patient. Then he said, “You don’t look like a kidney patient.”

Um... Ah... How does a kidney patient look like? Well, I guess I should take that as a compliment because I know exactly what the doctor meant. It’s the look of some patients I meet regularly in the NKTI Hemodialysis Center. This certain look. An aura, If you will. Pallid but dark, lacking in vigor, with an aimless stare. One the depicts defeat. I learned later that this happens when one is under-dialized; those who miss/skip sessions, those who go to the center just once or twice a week even when the doctor prescribed 3 sessions a week. I just hope I won’t reach that stage.

Going back to the urologist, he cleared me after performing a DRE and ordering a PSA test(the subject of my last entry).

With this development, I went to see Dr. Celestial(my nephrologist), to consult on what next steps to take assuming that I get a go from cardio come July. So again, scores of blood tests for me and Ninette(my wife and potential kidney donor) among others. Dr. Celestial told me this is the stage 3 out of 4 stages of tests for KT. When we clear all 4 stages and all documentary requirements, everything will be submitted to the ethics committee who will evaluate all results and documents and hopefully, approve the transplant.

I still learn a few things about ESRD and living with it. Sometimes I feel that medical professionals just do their work without educating their patients as well. Don’t get me wrong, they are very good at what they are doing. They are very well trained. But sometimes you learn details on your own. By reading, by talking to other patients and their companions, by experiencing. Yesterday in dialysis, a tech passed by my chair and did a casual glance at my machine’s touch-screen monitor. And he stopped and told me to inhale deeply. Apparently, for patients with a Permcath as access, taking deep breaths at certain times during dialysis is needed to prevent low arterial pressure, and prevent the alarm from sounding off. The nurses did not tell me that, the doctors did not tell me that. A tech did, and I had almost an alarm free session last night.