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. 

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. 

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.