On June 28, I noticed that Denny was very jaundice. He had no other symptoms; he was just extremely yellow. After trips to the ER and local doctors, we found ourselves at a liver specialist at IU Hospital, Indianapolis. He ordered a CT scan which found a blockage in the bile duct, between the liver and the gall bladder. This blockage caused bile to back up resulting in jaundice. On July 11, Denny had a procedure called an ERCP, to put in a stent to allow the bile to flow, and to scrape the blocked area so a biopsy could be done. The surgeon told us at that time he was sure it was a tumor but that he'd get back to us with the biopsy results.
Due to some miscommunication, we learned he needed a liver transplant when paperwork came in the mail. Denny had received a call that we needed to go to Indianapolis for an appointment on July 30. We assumed that was to learn the results of the biopsy. Paperwork followed the call a few days later letting us know the appointment was actually with members of the transplant team. Learning that your husband has cancer and needs a transplant is awful enough, learning by mail is just plain terrifying and wrong.
I called the liver transplant unit secretary the following morning. I explained we received the paperwork and had no idea what lead to the upcoming appointment as we were told his liver was fine. Her response, "oh wow!" The liver specialist was out of the country but she promised to find out who was covering his patients and to have them call me. The liver specialist himself called (from where ever he was) a few hours later. He told me he spoke to Denny; Denny says he did not. Denny only spoke to the woman who called to schedule the July 30 appointment. I personally believe someone dropped the ball but did not get into it with him as we had more important things to discuss. He said the tumor was malignant and that the only way to successfully get rid of it was to do a liver transplant.The cancer is isolated and the goal is to get the transplant before it spreads.
The meeting with the transplant doctor and coordinators on July 30 went well. A team of doctors feel the best course of action is a transplant to insure (as much as they can) that the cancer does not come back. There are other options too but they are less effective. There are all kinds of other tests to be done to make sure he is healthy enough for a transplant. Some will be done in Indianapolis, some locally. Denny had some lab work done (20 plus vials of blood) and a chest x-ray while we were in Indianapolis, and we met the nurse who will be our point of contact throughout this entire process.
The transplant team meets Tuesday, August 5 and Denny's case will be presented to the team based on the amount of information that is currently available. Denny still has to have all of his organs tested to make sure they are healthy enough to make him an appropriate transplant candidate. They will also likely recommend 2-3 cycles of chemo and a round of radiation to shrink the tumor while he waits for transplant. Luckily,this type of cancer does not often spread but it does grow. Obviously we do not want either thing to happen.
The team we met with on July 30 believe Denny is an appropriate candidate because he is in relatively good health for a 59 year old man. The doctor reported that typically people on the transplant list are there for 6 months but, Denny has a rare blood type, AB positive. So, while there are not many AB positive people on the transplant list, there are also not many AB positive donors. Regardless, we are hopeful. Also, his MELD number will likely be low. The MELD number is what determines where you are on the transplant list. The higher the number, the higher you are on the list. Because this is a cancer situation, the hospital will appeal to have his MELD number increased so he is placed higher on the list. This is common in this type of situation. We will learn his MELD number once all of his testing is complete.
While we do have health insurance, we are anticipating enormous medical bills. Not only is there the cost of the transplant and hospitalization itself, there is also the expense of testing, chemo, radiation, medications, travel, and lodging. I'm sure there are other expenses that we have not anticipated just because we haven't been faced with them yet. According to the Transplant Living website (http://www.transplantliving.org), the cost of a liver transplant in 2011 was $577,100. With deductibles and copays, our out of pocket expenses could be close to $121,820.
Denny and I are hard working people who do what we can for others. We are a middle class couple who have each worked hard to raise our children, and help our family and friends as we can, when we can. We are not people who often need to ask others for help. This medical situation has changed that. Financially, we cannot do this on our own. I've been crunching numbers for a week and cannot think of any way for us to raise $25,000 let alone $125,000.
We know we have wonderful family and friends who will help us as they can. We also have no expectations and make no assumptions as they each have obligations and responsibilities. Regardless, we have to ask because that is the reality of our situation. We also have to rely on the generousity of strangers who will read our story and will feel compelled to donate whatever they can to Denny's transplant fund just out of the kindness of their heart.
So far, this experience has been both frightening and humbling. It has also been a positive experience. Almost everyone we have interacted with, both locally and in Indianapolis, have been confident that Denny's cancer can be treated successfully. We believe that as well. We will continue to move forward, maintaining our own positive attitudes when trying to lead as "normal" as a live as possible. More importantly, we will continue to love each other, and our family and friends, because we know not one thing can ever be taken for granted.
Love and appreciation to all,
Denny and Theresa Kaplon
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