Steve has been listed for transplant. He was accepted by the transplant committee after quite a battery of medical tests and examinations and labwork, and our insurance company was quick to approve the listing.
This wasn't great news to Steve, probably because it means he really does have a disease that will one day require transplant, and when going about day to day life this reality is easy to sort of deny because he feels pretty good most of the time.
So let's go through the Q & A time:
1. When will he get a liver? We don't know. He doesn't need one right now. It is amazing how diseased the liver can be and still get the job done. Fortunately Steve is doing well at this time.
2. How does someone get on a transplant list? To get on the list a person must go through a huge, expensive battery of tests, labs, and examinations to show that you are healthy enough to recover from a transplant and take all the anti-rejection meds that will be required for the rest of your life. After all that their case is presented to the transplant team for approval. After that the insurance company has to approve it.
3. How do they determine who gets a liver? This is determined by the MELD score.
The Model for End-Stage Liver Disease (MELD) system was implemented February 27, 2002 to prioritize patients waiting for a liver transplant. MELD is a numerical scale used for adult liver transplant candidates. The range is from 6 (less ill) to 40 (gravely ill). The individual score determines how urgently a patient needs a liver transplant within the next three months. The number is calculated using the most recent laboratory tests.
Lab values used in the MELD calculation:
- Bilirubin, which measures how effectively the liver excretes bile;
- INR (formally known as the prothrombin time), measures the liver’s ability to make blood clotting factors;
- Creatinine, which measures kidney function. Impaired kidney function is often associated with severe liver disease.
Within the MELD continuous disease severity scale, there are four levels. As the MELD score increases, and the patient moves up to a new level, a new waiting time clock starts. Waiting time is carried backwards but not forward. If a patient moves to a lower MELD score, the waiting time accumulated at the higher score remains. When a patient moves to a higher MELD score, the waiting time at the lower level is not carried to the new level. The clock at the new level starts at 0. (Example: Patient has a MELD score of 15 and has been at level 11-18 for 100 days. With new laboratory tests, the patient’s MELD score is 22. The patient moves to a new MELD level of 19-24. The patient’s waiting time at this new level starts at 0 days). Waiting time is only used as a tie-breaker when patients have the same MELD score.
The four MELD levels are:
The four MELD levels are:
- greater than or equal to 25
- 24-19
- 18-11
- less than or equal to 10
The great news is that Steve is at a high level 1 or a low level 2 right now.
4. So how does he move up the list?
As he gets sicker, his labs will reflect that, and his MELD score will go up. Generally, with his disease, the bilirubin level goes up the fastest, but it has the lowest weighting in the MELD score calculation. So he could get pretty sick before he moves up the list. That's not good, but...
We are hopeful that he will continue to stay where he is for a long time. Since the last infection was precipitated by a surgical procedure and not by the disease itself, we hope that through good diet and righteous livin' he will stay clean, so to speak.5. Does our insurance pay for transplant?
YES! We are fortunate in that our insurance covers transplant as if it were any other surgery. Our out-of-pocket expenses are low compared to some plans. That said, I just paid an additional $600 in bills for the transplant evaluation and received another whopper for $1500. You know, pocket change.
6. Wouldn't it be better if he just got a transplant now before getting so sick?
Remember, this is a major, major surgery requiring another person lose their life for Steve to keep his. He needs to be really very sick before such a huge surgery. Once he has the transplant he will be on anti-rejection medications that supress the immune system for the rest of his life. Medications have plenty of potential side effects. And, while the risk is small, there is the risk of the disease recurring. 7. How does this disease impact our everyday life. By and large, there is not the giant change in lifestyle that one might expect. He is weaker and he gets more tired. That means he often wants to just rest after work rather than do projects. It takes him longer to get tasks done. Quite a bit longer.
The kids worry about Dad and wish he could just get a transplant now. I have to explain it from time to time. I try hard not to think about it much, but how can I not? I am in healthcare and have seen and known many people on the liver transplant list. I had to stop researching on the internet because people's personal stories that I found were a little more than I can handle. The real story is that God's grace covers us on a daily basis, and He is enough. He is true to his word when He tells us, "I will never leave you nor forsake you." When I am afraid, I remember, "Do not fear for I am with you; do not be afraid for I am your God. I will strengthen you and help you. I will hold you up with my strong right arm."
I leave you with this. When I start to focus on negative things, Phillipians 4:8 comes to mind, and I hope it does for you too: "Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." AMEN!
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