Lung Transplant Education

We had lung transplant education today. It was basically an information session held for patients and their support teams. Gess's sister Diana joined us for the session. It was informative, but honestly it sort of freaked me out. It makes this whole process seem so much more "real" and it really hit us that this could be happening a lot sooner than either of us really expected.

Here's a brief description of what happened:

They told us about the evaluation process and the tests that are required for that. Gess has gotten several of these tests done and will get some more in the following weeks. As far as I know, he will be finished with all of the tests on September 3rd. He does have to consult with the pain doctor again and our current appointment is not until mid-September but they are going to try to get him in earlier. When all of the tests are done the transplant team (which is made up of the surgeon, social worker, pulmonologist, dietitian, etc.) meets and makes a decision on listing. The team could decide that they need to do more tests or evaluations. They could also decide that Gess is not a good candidate for some reason and decide not to list him. Or they could decide that it is time to list him and put him on the transplant list. Because Gess's situation is a bit different than the "normal" situation for transplant, the team will likely appeal to the powers that be for an exception to get him a better placement on the list. They said that we should hear about the listing decisions within 1-2 weeks after all of the tests are finished. So, conceivably he could be listed by mid-September, but it could also take longer depending on any number of circumstances.

Once he is listed, we basically wait. The average wait time at the UW is 3-4 months, but ranges anywhere from zero days to about 2 years. We need to be "on call" at all times and be able to get to the hospital within 3 hours of receiving "the call." The "call" is made when there is a likely match. This is based on a preliminary assessment of the donor's lungs, etc., so it doesn't mean that the lungs will turn out to be good, etc. The UW surgical team will have to go to the hospital were the donor is, assess the lungs, procure them, and then transport them back to the UW. At the same time, they need to make sure that Gess is healthy enough to receive the lungs. If he is having some sort of infection or fever or other issue, he might not be able to accept them. If both Gess and the donor lungs are good to go they will take him off to surgery. The surgery lasts about 6 hours for a double lung transplant, but could be more or less depending on what goes on.

They expect him to be in the ICU for a few days following the surgery, with some of that time on a ventilator and with various tubes and wires. They expect the hospital stay to be about 2 weeks but that can fair from as little as 1 week to several months depending on the circumstances.

Once he is home, he will have a pretty rigorous maintenance schedule, especially at first. He will be on a number of new medications (8-10 new ones) and will have to carefully monitor his lung function and vital signs every day. He will need someone with him 24/7 at first and will have weekly appointments. He is supposed to get a lot of exercise, but will have to be careful with arm movements because they cut the sternum during the procedure and it takes about 8 weeks for that to heal.

More hospital time

Gess is back in the hospital...I think that this is the fourth time in four weeks, but who's counting? More bleeding from his lungs. It seems like the bleeding is getting worse. On Monday he ended up with about 6 cups total (which is 3 pints)! The docs gave him 2 unit of blood and admitted him to the hospital. The painful spasms in his right lung continue and no one seems to have any idea what is going on.

They are continuing to do transplant evaluation stuff, so at least we are getting that done. They did a bunch more blood work (taking 15 vials!) and more urine. They were also able to do the right heart cath today. Apparently the doctors want to do a endoscopy too, but I am not sure if they are going to be able to do it while he is inpatient.

Gess's sister Diana is in town and she has been doing a lot while he is in the hospital. She and Gess conspired to have her come into town for a week and send me away for a little break. I went to Portland for a few days and was able to get some rest and relaxation, which was very nice. And while I was gone, Gessner and Diana did a lot of cleaning since they know that having a messy house stresses me out. This was all supposed to be a surprise (I really do have a sweet husband), but their dad let the cat out of the bag. So, it wasn't a surprise, but still a wonderful gift.
Tomorrow we are supposed to have an appointment with the liver doctor but since Gess is inpatient, I don't think that we are going to make it. We also have lung transplant education, which I think that we are going to go to, inpatient or not.

He missed his DEXA scan (again!) and diabetes appointment because he was inpatient, so we will have to schedule that.

Updates

More drama on the CF front. On Saturday Gess coughed up 3 cups of blood. He is certain about the amount because he happened to have an empty pint glass next to him. Definitely not good. The pulmonary team on call was headed by the director of the CF center and she told Gess that he needed to come in. The good thing was that she called the ER ahead of time and that paved the way to get him admitted to the ICU. The issue was whether or not to call interventional radiology (IR) in to see if they could locate the source of the bleeding. To be blunt, IR wants nothing to do with Gessner so it was no surprise that they didn't want to go in. The CF doctor did talk to them, but they decided not to go in this time. The recommendation was to press on with the transplant evaluation as that is the only real option.

The medicine team that followed Gess this time (and last) was great. They got a few of his tests done, so we are on track evaluation-wise. They ran some blood work, did a CT of his sinuses, an echocardiogram, and an esphogram.

I did have one freak out when the tx coordinator told me that "there is no way they are going to list him while he is on pain meds." In following up, I think that this was a vast overstatement. The pain management is a big hurdle because of his extensive allergies, etc., but the pain specialist was reassuring that this will not be an exclusionary issue. We need to see the pain specialist for (another consult) but they don't have any appointment soon, but they are going to work on trying to get us in sooner.

What's up for next week: DEXA scan, diabetes clinic, hepatology clinic, and lung transplant education class. Gessner's sister Diana and her daughter Hannah are going to come for a week and give me a break. This was intended to be a surprise, but Gess's dad let the cat out of the bag. It stressed me out a bit because my house is a disaster, etc. But...I am trying to let it go and try to take this as a very nice gesture from my husband and his sister. I am going to go out of town for a few days without many plans...just chill, sleep, and try to relax. I believe that the plan is for Diana to clean the house some--which will be awesome, though the whole thought of someone seeing my mess causes a slight (or not so slight) panic. I'll get back in time for some work obligations and the transplant education class.

To follow: nutritionist, heart cath, social worker, lung transplant surgeon, lung transplant clinic, pain clinic, and liver transplant clinic. If we can get squeezed in for the pain clinic, all of this will be done on September 3th. Yikes!