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...

Sunday, March 17, 2013

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.