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.         

Hemodialysis 101

Transfusion

Due to my very low hemoglobin count, I needed blood transfusion right away. I checked in the National Kidney and Transplant Institute at around 10:00pm on a Thursday. By dawn Friday, I had my first unit of blood transfused. I had a total of four units during my four days of confinement. Two transfused intravenously at bedside and the other two during dialysis.

After the first bag, I was wheeled to the Operating Room to have an IJ(Internal Jugular) Catheter inserted. With local anesthesia, the whole procedure lasted only around 20 minutes. So, I have tubes sticking out of my neck. It doesn't look so bad, the tubes are positioned so that one could wear a collared shirt and no one would notice unless you took a closer look. Others have IJ caths where the tubes are angled upwards that they need to wear scarves to hide it. Later, I found out, that the surgeon who did the procedure is one of the top vascular and transplant surgeons in the country, Benito Purugganan.     

Later that day, I had my first session at hemodialysis. The period leading to this session was one of melancholy. I dreaded this first session because, to undergo it would mean, I will have to go through this all my remaining life. It had a way of making you feel guilty. Of making you blame yourself. Your entire life flashing in front of you. It is difficult to accept. You feel out, lost, defeated, dejected. But you have no other alternative, or "You will die"(see previous post).

Strapped in, hooked up, tubes connected, the nurse told me that I might feel dizzy as most first timers do. I didn't and just slept through it. The chair was quite comfortable. Two hours wasn't that bad. I felt a bit groggy, but perhaps it was just the earlier procedure's anesthesia. I was told about the weighing in and out routine. Weigh yourself before you sit on the chair and tell your nurse how much you weigh. I was at 78 kilos before dialysis and 76.7 after that session. I felt my footing was a bit unsure when I stood up on the weighing scale the second time. They also told me to check the dialyzer installed on the machine, to make sure has your name on the label.

(Image courtesy of
wegoexp.en.made-in-china.com)

A dialyzer is a cylinder-shaped filter that acts as your kidney. It is a container of fibers that filters excess fluid and toxins from the blood. As I said, it is my external, disposable kidney. Usually, dialyzers are replaced after around ten or so uses. The center technicians flush out and cleanse the dialyzer after every use to get it ready for reuse. That is why it is important that the patient confirms that the dialyzer installed on the hemodialysis machine is his/hers. Just like when you buy a bottle of bourbon from your favorite bar. The bartender labels the bottle with your name and stows it until your next visit. Well, a poor analogy. I do not have a favorite bar and do not know how bourbon tastes like.

Later that day, my doctor told me that the session I went through was not the real dialysis yet. That it was just to prime me for the real thing. To see how I can tolerate it. That I’ll be doing my first four-hour, bona fide hemodialysis in two days time. That I can be discharged after that session and just to continue it as an out patient. So it was all resting time for me. And I felt good. More energized. More alert and less tired. More color in my cheeks. The two-hour session actually improved the way I was feeling.       

Pains

The night after my primer, I felt some pain starting in my right ankle. I ignored it at first but it was getting more intense. What’s more there was some visible swelling in the area. So I told the nurse about it and after an hour was given tramadol with paracetamol(Dolcet) for the pain. Then later, since I was compensating with my left leg and foot, I started developing pain in my left ankle and left knee too. And later I had swelling in all three of those joints. And the pain was getting unbearable. And I couldn’t even stand, much less walk, even to the toilet. And I couldn’t sleep. A slight touch of the blanket in any of the affected areas would make me scream in agony. It was really bad. The doctors continued to give me Dolcet. I would feel a little relief after two-three hours but the pain never left. Underlying. Throbbing. Savage. And I thought I had a high pain threshold. 

So it was that way for the next several days. Even when dialysis day came, up to the time I was discharged from hospital. It was bed and wheelchair. Much later, I was referred to a rheumatologist. And was informed that these arthritic attacks happen because the dialysis creates an imbalance in one’s system because of the sudden drop of uric acid in the blood. Any significant increase or decrease equals arthritic pain.(You learn something everyday.) I was given Pred 10, a steroid that worked like magic. And told to take one tablet of colchicine the morning of my dialysis days and one tablet after dialysis to prevent pain from recurring. And if it does recur, just take the Pred as prescribed.

My first honest to goodness hemodialysis went well despite the pain. I was allowed to take my meal seated on the chair. They actually recommend that patients eat during the session. They say that eating counters the possibility of sudden dropping of blood sugar levels. Yes, hemodialysis takes out the toxins from the blood. And it takes out the nutrients as well. That’s why proper nutrition is important to ESRD patients.

Next, nutrition and dietetics and out-patient hemodialysis.   

I would like to thank the following guys who unselfishly came to the hospital blood bank to donate blood for my behalf. Although some of you were turned down, I will forever be indebted. I'm not sure also of this list is complete. So if you came to the blood bank to donate or tried to donate, please let me know.

1. Dr. Reggie Marcelo(ADMU Math Department)
2. Rev. Eko Budi Santoso, SJ(ADMU LST, Math Department)
3. Dr. Debbie Bautista(ADMU Math Department)
4. Mr. Egay Bodino(XS PPO)
5. Mr. Sandro Villar(XS PPO)
6. Mr. Prince John Lorenzo(XS PPO)
7. Rev. Mr. Tony Basilio, SJ(ADMU LST, Chem Department) and 2 other Jesuit scholastics