After we learned all about the living and some about cadaveric donors, we saw a social worker. She talked to us what to expect (or at least plan) after the transplant. Lot will be in the hospital for 5-7 days and then need to stay in Utah for a few more weeks. We could leave after a week out of the hospital, but it could be up to 3 weeks (4 weeks total). If there are no problems with the healing of the 4-5 inch incision, and NO rejection episodes, we could be home in 2 weeks. It is a very individualized process and no one is the same.
During this time in Utah, Lot will have labs drawn on Monday, Wednesday, and Friday, before 8am and have an evaluation of the lab results after 2pm that same day. Lot will not be able to drive for 3-4 weeks post op, so guess who gets to make very good use of our GPS (and of taking the wrong exits and being the one person in the state going the speed limit)? I am so not looking forward to that.
Because we have to stay in Utah for a little while, we will need someplace to stay where Lot can avoid people, sick people and kids to be exact. If whoever is a glutton for punishment and is watching our kids at this time wants to bring the kids down, that is fine. If they are sick or have been, Lot will have to wear a mask around them. If we go anywhere, he will have to wear a mask. Going to parks and possibly outdoor malls is fine. Walmart and anyplace there is going to be sick and a lot of people, is off limits. Lot will be immuno-suppressant for the rest of his life, but this first 3 months after the transplant is the most critical that he not get sick or have an rejection of the donor kidney.
Next we saw a transplant financial coordinator. She talked to us about insurance, the costs of the transplant with various insurance options, the prescription costs when we leave, etc. The only cost to us when we leave the hospital is for the prescriptions. Everything else will be billed to the insurance first and then us. The total cost before insurance for a cadaveric donor is $265,700. A living donor is $292,700. Medicare Parts A, B, and D cover the majority of the cost. Lot qualifies for what is called Extra Help, the costs will be even less to us. We are not sure what those costs will be until we get a bill. If everything goes smoothly during surgery, it will be less than if they run into any unforeseen problems. Same thing with the prescriptions. There is a drug called Valcyte (no generic at this time) that Lot may have to take, although 90% of patients have to take it, so there is a high chance Lot will fall into that category. Anyway, that drug is very expensive, but it is only needed for 3 months. After that, he will be on Prograf, Prednisone, and Cyclosporine. Those are the 3 immune-suppressant drugs that Lot will have to take for the rest of his life. He will not have to be on Humira for his psoriasis and athritis being on the 3 drugs. Humira is in the category of immune-suppressant drugs and being on 4 does not help at all. The other 3 should help control the issues that the Humira is for.
After the financial coordinator, we saw the dietician. The worst thing that she said was that Lot should not eat whole wheat anything, ie, pasta, bread, rice. White only, which is bad for us because we love whole wheat bread and spaghetti noodles. The nutrition factor is icing on the cake, we just love how they taste. Lot also needs to give up his chocolate milk, it is too high in calories. He needs to get his BMI down to 35 or less in order to receive a transplant, so from his dry weight (first thing in the morning, after he has drained the fluid and used the bathroom, but before eating), he needs to lose about 10 pounds. They thought it was more, but we had just eaten and he had not had his last drain, which added about 3 pounds to his weight.
Once Lot has received his transplant, he can relax on the renal diet (tons of protein, white starches, fluid restrictions, etc). He will be able to have potassium containing foods, just in moderation (breakfast burritos and hash browns here we come!). She also gave us a website to use when planning meals, davita.com. It is all renal diet approved and after talking to others on the diet, there are good recipes on there.
The last 2 people we saw were the transplant nephrologist and the transplant surgeon. They told us that Lot is a little anemic, but we knew that already. It is really hard to get all the protein that he needs in a day, especially after being told 7 1/2 years ago to go low protein. Lot is currently eating 4-5 servings of lean protein (turkey, fish, chicken), a protein supplement, a renal vitamin and a pro-biotic. We normally go through a dozen eggs in about a week and a half. Now, I buy a dozen and half every week and sometimes need to buy another dozen. Eggs are an easy, fast way for Lot to get protein. We also don't have any meatless meals.
We didn't learn too much from these 2 that we hadn't already heard or that we already know. For 6-8 weeks after the transplant (I have typed that word so much that I now have a hard time typing it), Lot will be under a weight restriction. Lifting Konnor, who is 24 pounds right now, may not be allowed. Lot will also need to be very careful for the rest of his life in getting hit where the new kidney will sit, which is in the left or right upper hip area. After 3 months, he will just need to avoid contact sports where he may get hit there.
One last thing, if we do any traveling where will not be in close driving range and/or phone contact, we have to call the center. When Lot is put on the cadaveric donor list (gotta loose those pounds first), if a kidney becomes available and we are not able to get there in time or not in contact for a few hours, the kidney will go to someone else. The wait time is about 2 years for someone with type B blood, so it is imperative that we find a living donor and as fast as we can.
We will know more in a week and a half when we get the results back from Utah about the 14 vials of blood and urine sample taken on the 22nd.
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