Nov 11 – Progress report

We have just completed an interesting month! After our trip to Eugene it was off to OHSU on Friday for blood tests and dressing change of the PICC line used for infusions and blood draws. After the tests they decided to admit me to the hospital for a “tune-up”! They decided to change blood pressure medicines to try and get my blood pressure up as it really drops when I am standing. I do not have dizziness but the doctors are concerned. I am sometimes low on phosphorous and magnesium which require infusions but most do not require anything other than a visit to the infusion center at OHSU. My liver counts are on the mend so maybe we are almost over that bump in the road. After three days I was released from the hospital but assigned a home care nurse to visit once a week as well as a physical therapist who comes twice a week. I am classified as a fall risk and they want me to use my walker and build strength so I can again walk without the aid of a wheeled walker or cane. The exercises are with 5 lbs of weight on each leg. When Brett and Cecilia came for a visit she wanted to try the weights.  She quickly announced “I can’t move”. I am gaining strength and making a lot of progress. The doctors are pleased with my progress and have approved us to take a trip to California to visit family, giving us a break from the 2 trips a week to the hospital infusion center. We planned to carpool with Roy and Suzanne going half way one day and spending the night at a motel to give me the rest I need. We are looking forward to seeing Nancy’s sister and family as it has been a couple of years since we have visited in Modesto.

We have had many visitors this past month which is always uplifting. We had Tom and JoAnne from Roseburg stop by on their way back from a diving trip in South America. We also had Teri Warford stop by. She retired from DODDS around the same time we did and enjoys living near Flathead Lake in Montana. She spent the afternoon and we enjoyed visiting the Ridgefield wildlife refuge where we enjoyed seeing tundra swans, many kinds of ducks, swans, a coyote, king fishers, We were glad she could stop by for a visit and it reminded us of how we want to get back on the road. We may start to post pictures on Facebook as Teri does, which she recommended. 

This coming week will keep us busy as Brother Greg is coming for a quick visit before heading back to Texas.  He and Geri will spend a night with us before heading to the airport. Of course that prompted a quick plan for a family gathering which we are looking forward to.  Later in the week we will be looking forward to having a group of retired DODDS teachers for a gathering.  Brett was here with Cecilia to assist with some projects for us. We sure do enjoy having him close to help out, he did a great job of making a platform to raise my chair so I can be a bit more able of getting up and about. He also checked out the car and hung a few more pictures for us. Of course we continue to prepare for our trip to California to see family. We continue watching the weather closely as winter seems to be here and we have to pass through mountains on our trip south. Nancy sure hope we do not have to chain up the car on the trip as she now does most of the driving.

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)

June 12 – Progress report

June 12 – 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. 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 shared with 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 headed out early Monday morning 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 that caused the problems, or maybe Ray passed a small gallstone 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 Ray would be put back in the hospital just before Kari and family arrived from Tennessee. They were scheduled to arrive that coming 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. They called from North Platte, Nebraska and were headed for Wyoming the next day to visit Charles’ cousin and then on to Yellowstone. They expected to be here Saturday or Sunday.

Brett and Cecilia were over to visit on Saturday and had lunch as well as helped Nancy get ready for the family visit. Even though Ray still was not very energetic we had a good visit and felt better with Brett’s help. It sure is nice to have Brett and Cecilia nearby! I want to get this posted soon and then will work on an update about the family visit. A preview is that all went well and Ray did not need to go to the hospital except for planned tests.  .

July 4th and July events

July 5th and July events
After the events of the week before Kari and family arrived we were ready for a change and we got it. Ray has been getting stronger and is not sleeping so much. The latest blood tests and sonogram show good results. Ray will be going in for more tests the end of July and we will and keep you informed of changes as we learn of them. Recent visit brought news of improving blood tests including liver function improvement. The bone marrow test revealed Ray now has 100% donor cells which indicate the transplant was totally successful. He is still battling host / donor complications the liver and a few mouth sores and skin issues. The diabetes was also brought on by the steroid for the graft vs host, so I now do blood sugar checks 3 times a day and take insulin. I have to be very careful about sugar and carbohydrate consumption. I still have weakened muscles from medications so I use a cane when walking to avoid falls. I also do daily exercises to help rebuild muscles, which is going well. 

We sure enjoyed having Kari and family here. Our town of Ridgefield puts on quite the 4^th of July celebration. Before the “old style” parade that goes on for nearly 2 hours. We had blueberry pancakes and waffles prepared by the grand kids! They were great!  Roy, Susanne, Bruce and Julia joined in the feast. Then we enjoyed the parade before having lunch at home. Some family went back to the center for kid activities (face painting, games, petting zoo, crafts and other events.) Some of us rested before we had an at home barbeque. Charles reminds us that we grill, not barbeque! That evening we walked to the park and enjoyed a great fireworks display, sitting on blankets looking up at the colorful displays that went on for about 45 minutes. Later in the week We traveled to the coast where the grand kids could play on the beach and fly kites. We enjoyed having Brett and Celia able to join us for the family outing.    

June 9 – RELEASED!

On Friday June 8^th we traveled to OHSU (Oregon Health Science University Hospital) for more blood tests to evaluate my Graft vs. Host disease that has affected my liver. I have been taking drugs to reduce iron, increase potassium and magnesium, plus steroids, and lots of fluids to keep the liver flushed. Drinking a minimum of 2 liters a day does not let you get too far from a toilet! Also on insulin for steroid-induced diabetes (seems like it’s always something, as Gilda Radner used to say!) The Medicare coverage for the rehab facility expired on June 17 so we were hopeful to see improvement and be released from the rehab center where I have been for over 3 months now! We travel to OHSU in Portland for the blood tests and Dr. evaluations of progress and changes to my liver. We got off to a shaky start with my breakfast coming late, Nancy running late and documentation for Dr. not ready to send with us. The I-5 Bridge over the Columbia was open but reported moving slow as it was commute time. We did arrive at OHSU nearly on time and the nurses drew lots of blood samples for the required tests and the results showed continued improvement so the Dr. stopped the 1 hour infusion and changed a few medications but did require me to continue drinking 2 liters of liquids a day to keep flushing the kidneys and liver. The best news was the doctor ordered me to be released me from Rehab! Being Friday we expected I might be released sometime the following week. When we shared the news at the rehab facility they said it could take until Sunday or Monday to be released. We decided to go for Sunday if possible. Then on Saturday my day started with the nurse saying I was leaving that day. I called Nancy and she was not aware of the change and indicated it was happening too fast and she was not ready. On further discussion we decided to give it a try as it would be easier to go to church on Sunday morning in Ridgefield Methodist where we were scheduled to transfer our membership from the Roseburg Methodist. We were hopeful of going to Roseburg to attend a gathering but thought that might be a long shot to make the trip.

Sunday morning was a bit stressful as I now needed to take my own diabetes test and we had been trained, but had not yet done it ourselves. Our first attempts kept reporting errors until Nancy noticed in the small print that we were inserting the strip backwards. It worked fine when we inserted the strip correctly! We realized we were going to be short on syringes for a trip to Roseburg and almost cancelled the trip but we both needed to have a trip out of town after being cooped up for 3 months! We decided to go for it. We hurriedly finished packing after church and stopped at the rehab center where we were able to get more syringes. We arrived in Roseburg about 5 PM and luckily everybody was able to stay later. We had a nice dinner and then sat around a fire pit and visited, which was great! Talking with friends and being in a new environment was just what we needed! It felt like we were camping and just the environment we needed. It was not until we were getting settled for the night that we realized we had somehow overlooked getting the diabetes test kit packed. We knew the basic injection needed and knew the warning signs to look for so decided to stay the night and return on Monday as originally planned, with stops in Roseburg and Eugene to check into some financial situations that had been put on hold because of my being in rehab and not able to complete. We were able to meet with the required people on short notice and accomplished the tasks, arriving home about 8 PM, missing the Portland rush hour! The tester was right where I had packed it, next to my chair.  A quick test showed I was in the safe zone and did not require a different dose of insulin at this time. That was a big relief to both of us for sure. You can imagine we were concerned since we discovered we had no way to check my glucose level since Sunday evening. We had a quick dinner and went to bed exhausted after the quick trip to Roseburg and back which is about a 4 hour drive each way. I should mention that Nancy did all the driving and did a great job!

Dealing with changes:

Dealing with changes:

Before my stem cell transplant they told us there might be some “bumps in the road” in the recovery process, but some of them seem more like pot holes. The most recent challenge required returning to the hospital for two weeks (pneumonia and graft vs. host disease in the liver) and then transfer to the rehab center so insurance could cover the expenses of infusions and physical therapy, as home care was not an option. I have had many experiences documented in recent blog entries about life in the rehab center. I am still here and it has been over 2 ½ months!

Last Friday I was scheduled to travel to OHSU for blood tests and Dr. evaluations of progress and changes to my liver. We had noticed that I-5 Bridge over the Columbia was going to be closed from 11 PM until 7AM Sunday but thought no problem as we were not going to use that route until about 8 AM. Imagine our surprise when it was still closed after 8AM. That required a detour to the I-205 Bridge, and back to I-5, adding distance and time to our schedule but we managed to make it without being too late.

The blood tests continued to show improvement and the doctor stopped the 4 hour middle-of-the-night (3:30-8 AM) daily infusions which allows me to sleep through the night, which is sure nice. I still have an hour infusion just before going to bed and the Dr. said I must continue to drink 2 liters of water a day to keep flushing the kidneys and liver. Only problem is the number of times that requires me to pee! They scheduled another evaluation in a couple of weeks, but I remain in the rehab center until then. Insurance benefits run out for rehab June 17^th so Drs. are working on a plan to switch to a pill version before that happens. Of course we are pulling for that so I can go home. Counting hospital time, it’s been over 3 months since I’ve been home, except for short visits.

I take approximately 20 meds a day and Nancy was glad to let rehab take over that task of keeping track and dispensing the meds. The nurses crush the pills and mix them with applesauce or pudding to make it easier for me to take so many at one sitting. They also check my blood sugar and give me insulin. Nancy works it into her schedule to visit daily and often we are able to have lunch and dinner together as well as check out for some change of pace. We can go out shopping or for lunch or dinner or spend some time at home. Last week we were able to visit Brett and Cecilia at Brett’s new place. He fixed a fine dinner for us and we enjoyed spending time with them. Their place is old, and close to the freeway, but has a lot of charm and character, plus big old trees, rhododendrons and other neat older homes in the neighborhood. Cecilia had to show us the “fairy garden” she and her 6-year-old neighbor and “best friend” have been working on. I think we mentioned that Halen is the daughter of an old friend of his from Roseburg days. And her grandparents, Mike and Rosemary, have been long-time friends of ours (35 years).

The weather is getting nicer and warmer and the flowers have been gorgeous this year. We had a couple of big thunderstorms with tons of rain this past week. We watched one storm from Brett’s house and waited for it to let up before we headed home. Cecilia was so excited she was jumping up and down, but said she was excited and scared! She will be 5 next month and she is getting so big, and smart, and lots of fun, of course we are hoping I will be released from rehab next week

CINCO DE MAYO AT REHAB:

CINCO  DE MAYO AT REHAB:
When I  noticed the menu for that day my thoughts were "what were they thinking?": Chow mein, egg rolls just did not seem right on the menu for that day! Then I learned the rehab center was planning a CINCO DE MAYO party for the afternoon as a special event. Turned out to be quesedillas and Odool's alcohol-free beer. Remember, there are many alcoholics being treated here or in other cases alcohol may effect medications. One of the patients got upset about the word beer being used period and would not even accept a root beer soda, then went on a lecture sermon that soda has gas and drinking it could make a person explode!  He was not taking a chance! That patient had water with the quesedillas and other hispanic snacks while most of us enjoyed a cold soda during our Hispanic theme celebration. I can now report that nobody exploded from consuming soda!