August update

June 9 – Progress report

We had kind of a bad week last week. Ray had been getting weaker and sleeping all the time, plus a couple of other problems and we knew the doctor was worried about his liver functions. We had an appointment Friday for lab tests and dressing change on his PICC line. After the lab tests the nurse said we could go home and they would let us know the results. She called just as we got home and said the liver functions were not good and the doctor wanted us to come back for more tests and maybe a sonogram if they could schedule it. She also said to pack for the possibility of being put in the hospital. A little later, as we were about to leave to go back, they called and said "don't come - we can't get an appointment for the sonogram today. Wait to hear from us." So, we stayed home and waited. An hour or two later the nurse called again and asked where we were; she thought we were coming and the doctor was waiting! We told her about the other call and it turned out it was the appointment desk and she apologized for the misunderstanding. So, again we packed up and headed back to OHSU where he had more blood tests and the doctor came to talk to us. He checked Ray out and said he didn't look as bad as his test results indicated (eyes weren't yellow, something they look for with liver problems.) Doctor said he wanted to let us go home, but to call and go to the ER if Ray got worse. He got really weak and tired on Saturday, plus dark urine and it finally dawned on Nancy that these were some of the side effects the doctor said to watch for because he'd started him on a statin for high cholesterol. If that happened he said to stop the statin and let them know. So we stopped giving Ray the statin and the next day he was feeling better. Funny thing was, the doctor called us at home on Sunday and said he'd been reviewing his tests and wanted us to stop the statin! Nancy told him we'd figured that out and he was glad. We had to be back at the clinic Monday morning at 8:00 am for more blood tests and to see if they could work him in for a sonogram. So we got up very early Monday morning and made it early and were able to get the sonogram and blood tests. The doctor came to see us again and said his enzyme levels were improving and the sonogram didn't show anything out of the ordinary. He was thinking it was either the statin causing the problems, or maybe Ray passed a small gallstone that may have been blocking urine without realizing it, since they know he has some gallstones. Anyway, he is doing better and feeling stronger. We went back to the clinic Friday to have blood tests again. The doctor leaves on vacation then, but there will be other doctors and nurse practitioners to see him. He'll have a bone marrow biopsy and tap of the Ommaya in his head to test the spinal fluid. These are standard tests at the end of the first year of the transplant. We just keep going, through all the ups and downs. It can be really wearing at times.

We were so afraid he would be put back in the hospital just before the kids and grand kids arrived from Tennessee, they were scheduled to arrive the 4th of July weekend. One of Travis's first questions was "will Grandpa be at home?" and Kari had to tell him that's the plan, but no guarantees. Kari and family were on the road. She called last night from North Platte, Nebraska and they were headed for Wyoming the next day to visit family and then go on to Yellowstone. They arrived here Saturday.

Brett and Cecilia were over to visit on Saturday and we had lunch as well as helped Nancy get ready for Kari and family to visit, Even though Ray still was not very energetic we had a good visit and felt better with the help Brett provided. It sure is nice to have them near!

We enjoy being home and being able to have several guests stop by to visit. Jo and End from LasVeg

June 9 – Progress report

We had kind of a bad week last week. Ray had been getting weaker and sleeping all the time, plus a couple of other problems and we knew the doctor was worried about his liver functions. We had an appointment Friday for lab tests and dressing change on his PICC line. After the lab tests the nurse said we could go home and they would let us know the results. She called just as we got home and said the liver functions were not good and the doctor wanted us to come back for more tests and maybe a sonogram if they could schedule it. She also said to pack for the possibility of being put in the hospital. A little later, as we were about to leave to go back, they called and said "don't come - we can't get an appointment for the sonogram today. Wait to hear from us." So, we stayed home and waited. An hour or two later the nurse called again and asked where we were; she thought we were coming and the doctor was waiting! We told her about the other call and it turned out it was the appointment desk and she apologized for the misunderstanding. So, again we packed up and headed back to OHSU where he had more blood tests and the doctor came to talk to us. He checked Ray out and said he didn't look as bad as his test results indicated (eyes weren't yellow, something they look for with liver problems.) Doctor said he wanted to let us go home, but to call and go to the ER if Ray got worse. He got really weak and tired on Saturday, plus dark urine and it finally dawned on Nancy that these were some of the side effects the doctor said to watch for because he'd started him on a statin for high cholesterol. If that happened he said to stop the statin and let them know. So we stopped giving Ray the statin and the next day he was feeling better. Funny thing was, the doctor called us at home on Sunday and said he'd been reviewing his tests and wanted us to stop the statin! Nancy told him we'd figured that out and he was glad. We had to be back at the clinic Monday morning at 8:00 am for more blood tests and to see if they could work him in for a sonogram. So we got up very early Monday morning and made it early and were able to get the sonogram and blood tests. The doctor came to see us again and said his enzyme levels were improving and the sonogram didn't show anything out of the ordinary. He was thinking it was either the statin causing the problems, or maybe Ray passed a small gallstone that may have been blocking urine without realizing it, since they know he has some gallstones. Anyway, he is doing better and feeling stronger. We went back to the clinic Friday to have blood tests again. The doctor leaves on vacation then, but there will be other doctors and nurse practitioners to see him. He'll have a bone marrow biopsy and tap of the Ommaya in his head to test the spinal fluid. These are standard tests at the end of the first year of the transplant. We just keep going, through all the ups and downs. It can be really wearing at times.

Brett and Cecilia were over to visit on Saturday and had lunch as well as helped Nancy get ready for Kari and family to visit, Even though Ray still was not very energetic we had a good visit and felt better with the help Brett provided. It sure is nice to have them near! We had several guests during the month to include Kari and family, Jo and Ed Hiramoto from Las Vegas, Ken and Peggy Thomas from Grand Terrace, CA, Marcia and Ray Reass from Bellevue WA, Sydney Richardson from Roseburg, and we took a trip north to Kingston to see Bev Sillerud (a one day road trip for Nancy and I)