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.         

This, that, the good, the not so good

Image courtesy of livestrong.com

1. Stress-induced ischemia in the apex and apical midventricular anterior/anteroseptal segments.
2. Adequate LV systolic function post-exercise with LVEF of 54%.

Those are the printed interpretation of the results of the Myocardial Profusion Stress Test I recently underwent. Now, those did not sound so good. At first glance, the second one might be something positive because of the word ‘adequate’. Anything adequate must be good, right? But we do not know yet. The first one though is making me a little bit scared. Ischemia means inadequate blood supply to the heart muscle. It’s time to make that appointment with the cardiologist. Also in the report, "The stress EKG showed no significant ST-T changes." With my limited knowledge, that's a good thing. It means that no significant irregular rhythm was recorded in the ST segment points of the EKG graph.

Many questions are clouding my mind. The most obtrusive being, with a stress test result like this, will I qualify for a kidney transplant soon or do I have to go another procedure to clear up any blockage? I’m really praying that it is the former. I will have more information after I see my cardiologist. For know, it’s just prayers and crossed fingers. 

4 vials of blood serum were extracted from me and a potential donor yesterday. That’s right, I have a potential donor. A living, non-related, possible donor. Anyway, we submitted the samples so that they can be subjected to tissue typing and cross matching. Basically, the cross matching  procedure involves introducing the donor’s blood serum sample to that of the recipient’s, and see if there are any antigenic reaction from the recipient’s blood. A positive reaction means that the recipient blood recognizes the newly introduced blood as foreign and therefore begins to attack it in self defense. That is not good. It further means that the donor is not a suitable donor even if s/he has good kidneys. The recipient will reject the new kidney right after the transplant.

Now a negative match result is ideal. It means, there are no antigenic reactions and the donor is most appropriate. This is one of those tests where a negative result is what you should hope for. Tissue typing gives more detailed indicators if recipient and donor are compatible. It looks at the type of antigens of both and sees if there are similarities. If they are way different, then there is no match. So cross matching is easy to achieve but tissue typing is more complicated and has many factors and therefore more difficult to attain. All the information I am giving out here comes from own readings in my attempt to understand my condition better.

I got the results today. But I cannot divulge them yet since the NKTI Laboratory made a mistake of subjecting only my blood serum for tissue typing. Instead, what they performed were just my tissue typing and the cross matching of my and the potential donor’s blood. They did not charge, and do tissue typing for the donor. That means the results I have on hand are incomplete. I am a little bit upset about that oversight. I even asked the laboratory staff if he was sure about what he was charging. The doctor’s order was clear: tissue typing and cross matching for both recipient and donor. Also, with NKTI being the premier hospital for kidney transplant in the country, I’m sure this is a common procedure. How could they miss this? It’s exasperating. Now I have to ask the potential donor to again submit his/her blood serum. And with that, need another day of waiting for the results.

I was hoping to write a better ending to this post. But with what has happened, it is impossible.