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. 

Love - Hate Relationship

I have this Love-Hate relationship with my Permcath Hemodialysis access:

1. I love it because it is hidden underneath my shirt. People do not notice it unlike when i still had an IJ catheter at the base of my neck exposed for all the world to see. (There's a previous post here somewhere showing how it looks like.) 
2. I hate it because I cannot go topless even in a beach setting. I joined the company summer outing to a beautiful beach last week and I felt silly walking around with a shirt on.
3. I love it because it doesn't hamper movement too much; I can still walk and climb stairs, and swing my arms. Although I wish I could do more, like lift weights and do more intense exercise.
4. I hate it because the site becomes itchy especially around the adhesive that secures it in place. I don't mind the Tegaderm; it is quite comfortable. Try sticking a micropore tape on your upper chest and let it stay there for at least 3 days and you'll get the idea.
5. I hate it because it is difficult to get a decent bath/shower. Hell, I haven't had one since Feb. I cannot get the site wet since that will invite infection.
6. I hate it because I cannot go swimming. And swimming is like my overall favorite physical activity.
7. I hate it because I cannot perspire so as not to get the dressing wet. So I have to keep myself in check when exercising.
8. I hate it because most of the time, it acts up during HD sessions, that the machine's alarm goes off like crazy, that I seldom reach the desired flow rate the neph has ordered. And because of this, I'm scared that I am not getting enough dialysis.
9. I hate it because I have to go on another O.R. procedure tomorrow to get it repositioned. And this means another expense I'm not sure insurance will cover. That means another day off work.
10. I love it because it is my lifeline. So I have to take care of it. I've invested quite a lot to put this in, so I hope they will be able to correct it tomorrow and future HD sessions will be issue-free. 

I had another blood extraction yesterday to see how high my antibody count is. Hopefully it's not alarming. Perhaps this developed when I had the 4 units of blood transfused when I was confined last February. In hindsight, I think they should have done some processing of the blood first before the transfusion.

The HD staff again adjusted my dry weight a kilo lighter. I've been registering a low, even negative  weight gain pre dialysis. And because I'm not showing any signs of edema and loss of appetite, I guess the weight loss is good.

I'm happy for a 'classmate' of mine. She has passed all work-up procedures for her transplant. It's easier for her since her donor is her sister. They already have a scheduled date for the transplant. Good luck.

The PRA Specific Class I test results will come out after a week. Help me pray for a low PRA percentage. 

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.

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)