Approved

Without any fanfare whatsoever, I received a call from the transplant coordinator whilst reading the action-packed Chapter 47 of Dan Brown's Inferno. Ninette(my lovely wife and willing donor) and I were in the lobby of the NKTI waiting to be called in for an interview by the Ethics Committee. One by one the prospective donors and recipients were called in to the conference room. I asked the staff in charge of cueing in the applicants when our turn will be. She said we were next in. So we waited in anticipation. We were ready and excited to meet and face the committee. We even power dressed for the event.

Then my phone rings… "Sir, You may now leave, the ethics committee has approved your transplant."

Weeks, months even, prior to this, Ninette and I underwent a series of tests to clear us for the transplant. We just need to undergo 1 more blood cross-match repeat test, and urinalysis and chest x-ray for me to rule out current infections. Then my admission to hospital will be on the 22nd; Ninette's will be the 24th. Procedure on the 25th. Of course this is barring any complication.

The next 2 weeks before my admission, I need to guard against infections and other illnesses. If I get even just a sore throat, all dates will be moved. Don't be surprised to see me always wearing mask. And If you see me without it, you have my permission to chide me. 

Family and friends' support have been keeping us positive. We thank you and ask for continued support even more in the weeks and months to come. Prayers have seen us through this and prayers will see us through more. Yesterday, I decided to drive up to Xavier School Nuvali along with Ninette and Byn(our niece/daughter). The 1.5-hour trip to the sprawling new Xavier School campus(I work in her main campus) located in Laguna was easy and enjoyable. Being a Sunday, traffic was light to and from. The main purpose was to visit the new chapel there; The Oratory of St. Francis Xavier, a.k.a. The Xavier Rock. A sort of pilgrimage to spend some quite time. I'm glad and thankful we did that.

Deadline!

The past 2 weeks went by fast. Ninette and I continued on with work up tests, seeking doctors' clearances, filling up forms and writing affidavits. One of the last doctors we visited was a psychiatrist. Interviewing us individually as recipient and donor; he asked direct, easy to answer questions to make sure we were sane enough to take on the decision to have a transplant. He will write up a psychiatric evaluation to be submitted to the hospital ethics committee. 

The NKTI Ethics Committee meets every 1st and 3rd Friday of the month. It decides which transplant cases to approve. Tomorrow, July 1st is our deadline to submit documents to this committee. It will meet this coming Friday. Basically, the required documents are the ones that show:

1. identity
2. relationship
3. consent
4. responsibiliity 
5. blood type, tissue and crossmatch
6. all work-up test results
7. doctors' clearances
8. medical report of both the donor and recipient from the lead nephrologist

Our papers are almost complete. We're still awaiting a couple of clearances and the medical report. Upon getting them, we'll have to get them signed and notarized before submission. I'm praying we make the deadline tomorrow.

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. 

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.