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.

Transplant 101

Image courtesy of pbfluids.com

Back when I was still in hospital, my nephrologist spoke to us about kidney transplant. He said, that in my present age(50) and condition, he is recommending that I undergo work up for a transplant. He spent an hour by the bedside patiently explaining several aspects of this kidney replacement therapy option. And there were many. There are two possibilities for a transplant; from a live donor, preferably a relation of the recipient, who voluntarily comes forward to donate one of his/her kidneys, or when the prospective recipient’s name is enrolled under the cadaver program and shall wait to be called as he/she moves up on the list and when a match for him/her is found.

A requirement for a live donor, aside being between 18 to 60 years old, is that there should be some emotional attachment/relationship with the recipient. Blood relation is preferred as tissue matching could be easily found among close kin. If not related, a friend, spouse, anybody with some close association with the recipient is allowed. Even an employer-employee relationship is acceptable. It is not true that one can ‘shop’ around for a matching kidney for the right price from a line up offered and paraded by physicians. If ever that practice existed before, well it doesn’t anymore. At least not legally. We have heard stories about individuals who sell their organs to the affluent buyer because they needed the money. I do not know if they were ever true and if it continues to exist. As long as there is a donor with a confirmed emotional attachment with the recipient, and both pass all medical clearances and have the capacity to pay, then a transplant can be scheduled.

On the other hand, when you are listed with the cadaver program, your hospital keeps your updated record in their database and your name moves up the list as others before you get their transplants. Donors are individuals who are declared brain dead but whose basal systems are still in function through life support. These may be victims of accidents, aneurysm or stroke. They can be card-carrying donors or one whose family decides to take that route. Of course this option is more expensive than when one has a live donor. There is an extra fee that goes to the donor’s family as well as for funeral expenses. Even the cost of transferring the donor from somewhere else to your hospital is charged to you. Of course your transplant team will make sure you get a proper match. Even if you were on the top or number two in the list, if the donor is not an ideal match, then someone down the line can be the recipient. You have to regularly submit lab results so the information is updated as you can be summoned anytime. According to my nephrologist the wait time is about six months to one year.

To get to be eligible for transplant via a live donor or through the cadaver list, there are very stringent requirements. You have to get clearances from about every medical specialty there is; Cardiology, Pulmonology, Gastroenterology, Neurology, even Psychiatry and Dental. And the process can be a slow one especially if you have to juggle all these around work. First, you are required to attend a half day orientation to make sure both the donor and recipient is educated on the particulars of transplant. It’s a lively discussion with a panel of doctors and allied medical personnel and even a is priest present. A very helpful open forum where the attendees could ask anything related to the disease and the transplant program.

Then you proceed to get your clearances from one physician, one test to the next. I had a chest X-ray and a 2D Echocardiogram last week. I’m scheduled to have the Rest and Exercise Myocardial Profusion Imaging test this coming week. Also, since I had blood transfusion just almost a month ago, I have to wait a little bit more before they could draw tissue for typing and crossmatching purposes. This is to make sure my system has stabilized with the four units of blood i received through transfusion and not get a false sample. Who knows, I might even have a live donor already. But we both have to work up for it, as the donor has a list of clearances to undergo too. I like it that the program is taking no shortcuts. This ensures ideal donor-recipient  matching and higher survival rates. 

Next, more on transplants.