Test Day at the UW

WOW, what a busy day! What a lot of information to digest! We started at the UW at 10am with a blood draw. One needle and 21 vials of blood for a multitude of tests. Many of the vials go to the blood bank for typing and testing for infections and diseases. That didn't take long and then it off to the vascular lab for ultrasounds of the arteries in the legs and in the upper body. The technician was very informative and volunteered info and answered questions. When John mentioned how cold his toes have been lately, he examined them and explained something called Raynauds Syndrome. When the body doesn't have enough circulation for the whole body, the toes get cold, the body shuts down blood flow to the extremities (toes in this case) so that it can save the vital organs. It is fairly common and can also be caused by emotional stress. He did share that John's arteries showed no signs of plaque or narrowing or weak walls (aneurysms). So, there was nothing there that would stop the UW from proceeding with their pre-transplant testing.

After lunch, which we brought from home to cut down on the sodium amount, we met with our UW doctor. The UW doctor had told us several weeks ago to cut down on John's sodium and we have been very careful with it. His intake is now closer to 1500 mg per day than the target of 2000 mgs per day. The result of this has been weight loss, he weighs eight pounds less now than when we started being strict again. The UW doctor also changed the diuretic and prescribed a larger dose with the intention of the loss of another six pounds or so. She thinks that it will help rid John of his dry cough and make him feel better as well.

So, what did she say about a transplant? She explained how the process goes, that there is a panel of cardiologists and other medical professionals that are presented with the patients history and prognosis, what has been done for him and the panel discussed what else might be tried, and eventually, hopefully, decides the patient is a good candidate for a new heart. There are a few more tests to take and then John's case will be prepared and presented by his advocates.

She also wanted us to talk to a transplant nurse today to gain some insight into what the future holds, to make an appointment in two weeks to see another nurse and in a month to see her again. She wrote the prescriptions we needed and we went to the pulmonary lab for a series of lung tests. The lungs tested out to less efficient than projected for a man of John's size, but the technician wasn't able to give a lot of information. However, his tests were not to determine whether or not John is a good candidate, but to tell the transplant doctors how to handle breathing for John during a transplant.

Ok, back to see the nurse who gave us several booklets to read and a huge amount of data to assimilate. He told us about the continual blood testing afterwards, with frequent biopsies of heart tissue to check for rejection issues. John will need to wear a mask in public for a good length of time and avoid any possibility of infection or virus because part of the rejection control involves suppressing the immune system.

While we were still in his office, the social worker came in. We know her from the pre-transplant support group that we have been going to for quite a while. She asked a lot of questions, about smoking, drug and alcohol use as well as insurance information. She gave us even more booklets to read as well as a DVD to watch. There is a contract to sign that bans smoking, drug or alcohol use and requires compliance to doctors orders, etc. No beer or wine with dinner? That could be a deal breaker. No wine with dinner on the cruise ships? No beer with fish and chips? Man does not live by bread alone. She also wanted to know about our support group, did we have people that we could count on when needed for rides and for support. That was the easiest question of the day. We have a great group, thank you all!

So now what? We wait. There are more tests, we need to see if the medication changes make a difference and, hopefully, wait for the decision of the transplant panel. We'll keep blogging as we know more.