People and life at the rehab/nursing facility:

People and life at the rehab/nursing facility: For a while I had the room to myself and then they assigned me a roommate who announced that he was a bi-polar binge alcoholic. He was here because he went on a binge, fell and cut his head on a wine glass and nearly bled to death. He was a nonstop talker who seemed to be an expert on everything from logging to religion. It was rather humorous when he attempted to teach the mentally challenged at the facility to play a special solitaire game. Many of the residents have had strokes or head injuries and have trouble playing Bingo. There is a woman who was an only child who spent twenty years in the Navy. She retired to the long term section of the rehab center and talks about how those years in the Navy were the best years but cannot remember much about them. She likes to color and play Bingo. There is a young man about forty who was unloading a car top boat which fell on him and broke his leg severely. They tried to repair it but infection set in and they had to amputate his leg, so he is here to get prosthesis and learn to walk with it. We also have many in wheelchairs. Fortunately for me, that first roommate was only here a week and then was released. My current roommate is much more compatible and “with it”. He is a 75-year old who fell down the back steps when his girlfriend’s dog tripped him up and sent him flying down the steps, breaking his hip. The first couple of days he was on pain pills and a little disoriented     The break has stabilized now and we get along fine. He’s a bit of a character and we laugh a lot. Also have a couple of neighbors we enjoy. The facility tries to provide a lot of activities. Nancy and I went on one such outing and it was amazing to see how long it took to load the wheelchairs and walkers for participants on the van for the trip to a nearby tulip garden. We spent more time loading and unloading than at the garden so it is unlikely we will try another trip out of the rehab that way. Those that took the trip talked about the outing for days. Since I can check out for a few hours at a time, we prefer to go on our own adventures. I started out using a walker and have graduated to a cane. We also have the use of an electric scooter from my sister-in-law so we are able to get out on a beautiful paved trail close to the facility. It is a trail along the Burnt  Bridge Creek. We take turns with the scooter so I can walk to build up my strength. It is great to get out in nature, along the nice creek and see the birds, flowers, etc. Some of the locals also have horses and chickens. When Brett brought Celia for a walk with us she enjoyed feeding a couple of the horses apple and carrots. For some of the residents the group outings are the only way out of the facility. One big highlight is a trip to Wal-Mart. You would not believe how much they look forward to that trip! Anyway, a sense of humor helps while I live here. Kind of like dorm life with interesting people but I need to be back to the rehab center by midnight or it affects insurance coverage.

We hit another bump in the road…

We hit another bump in the road… Before my stem cell transplant they told us there might be some “pot holes” in the recovery process. The most recent challenge required returning to the hospital for a few days when graft vs host disease attacked my liver. That is when my cells are fighting with the donated cells. I went to the hospital again in Feb./March for two weeks with pneumonia and then they transferred me to a rehabilitation center for physical therapy and continued infusion treatments for the liver problems. I had a liver biopsy and learned I had high iron, low phosphorus, low magnesium, and a need for some antifungal meds. I have a one hour infusion just before going to bed and then a 4 hour infusion starting at 3:30 AM that finishes just before breakfast. I still take about 20 pills a day and the latest blood tests show blood levels are returning to normal. I do have insulin checks because high blood sugar is caused by the steroids I am on. The blood counts and insulin counts are leveling out and stabilizing and the doctors hope this diabetic situation will disappear as they decrease the steroid dosage and my liver returns to.normal. I will be posting  a few more updates with more details in the next few days...

23 Update - Sorry it is late

It's a good thing we enjoyed our dinner out on the 7^th, because the next day I had a high fever and ended up in the ER again and was transferred to OHSU for another hospitalization. The high fever continued for 2 days and finally broke. Again, they couldn't locate the cause, but released me on Monday the 11^th after my fever had been normal for a couple of days. By that time Kari and family had left for their drive back to Tennessee. They needed to get back home because Charles started school the next week. Ray was a little “bummed” because he ended up in the hospital during their stay, but we reminded ourselves that we had had a great visit at home for 10 days, and the kids were able to come visit in the hospital room this time, so they could see where Grandpa was staying. They got a kick out of wearing a gown, mask and purple gloves.

I only got to enjoy about 3 days at home, while my doctor ordered a bunch of tests because of some problems I was still having. Ended up back in the hospital for another week, with many neurological tests, infectious disease tests, etc. They found some small blood clots in my leg and a couple in the lung (peripheral), so I am now on blood thinner. It seemed like there was a parade of doctors for several days. I didn't have any more fever, but was continuing to be weak and unsteady. One good thing was that I was next door to my original room (Dec/Jan) and had the same gorgeous view of the city and Mt. Hood. Unfortunately we've been having a cool, wet spring and early summer, so we only got occasional glimpses of the mountain. We did have a funny incident when the food service lady accidentally poured a vanilla milkshake all over me, the chair, table and floor. We had a good laugh and helped her clean it up as she apologized profusely. She was so thankful that we were gracious about it that she insisted on buying our dinner, so we enjoyed a wonderful dinner our last night. They finally released me again on the 21st with some new meds.

June 24 – Surprise at OHSU Visit

We were headed to the outpatient clinic with a little apprehension since my temperature seemed to be up. That means the possibility of a hospital visit. Darn, our suspicions were correct and we were admitted Friday afternoon. That was disappointing as we expected to be home when the Pavlik family came to our area for short overnight visit on Sunday. They started pumping me up with more antibiotics and taking blood samples, while Nancy was putting on miles rushing home to get the house ready for guests and I concentrated on getting rid of that temperature so I could be released. Much to our surprise the doctors sent me home Sunday morning so we had a great time visiting with Terilyn, Mark and Mackenzie on Sunday afternoon and Monday morning before they had to hit the road to visit a few more colleges that Mackenzie was interested in. We did not get to see Zachary who had a summer job or Nathanial who was attending a soccer camp, but maybe we will see them in a future road trip. I have lost a lot of weight and have to be careful when out in public to be sure my belt is cinched up tight to keep my pants from slipping down. I am being weaned off of many of the pills and hope that will allow me to regain some of my muscle and strength that seems to have left my body. I get around slowly and usually use a cane since my strength and balance are somewhat compromised. It is nice to be down to only two visits to the clinic a week and we look forward to some diet restrictions to be lifted as well, as I pass the 60 day mark of the transplant. We have had to avoid crowds which include restaurants for far too long. We had two more visits to the clinic during the week and then had a short but wonderful visit with Carol and Lou Brewer for lunch on Saturday as they passed through with their granddaughter, headed to Olympia, Washington to visit their son and family. Our friendship with them goes back to high school days for Nancy, and our wedding for Ray (45 years ago as of June 18!).

June 19 - Bump in the road update

On Friday, May 20, we headed for the outpatient clinic, fighting the morning commute which Nancy LOVES (not!). Since she has been doing the driving, she's had a crash course in heavy commute driving in Portland. So far we're surviving that and she's doing very well. I'd been having fevers for the previous few days so they ordered more tests and, with the weekend coming doctors decided I needed to be in the hospital. We spent the rest of the day waiting for a room and were finally checked in by dinnertime. We spent over a week in the hospital going through lots of tests and changes in medications. While checking for the cause of my fevers, which were going up and down, they pumped me with antibiotics and ran more tests. The doctors say this sometimes happens and they aren't always able to pinpoint the cause but but this time in checking a small rash spot they decided I was having some host versis donor reaction and started to treat the condition. They said most patients hit a couple of these "bumps in the road" along the way and they didn't seem to be overly concerned. We were glad to be released from the hospital but the stay left me drained of energy. They had been giving me steroids to help fight the host vs donor reaction and we couldn't figure out why I kept getting weaker! Nancy asked the right question when she said I thought steroids bulked you up. That is when we learned that there are two types of steroids. Athletes sometime do bulk up on steroids but the type I was getting quickly suck muscle mass and tone out of the the body leaving you very weak and all I wanted to do was sleep! They want a little graft vs host reaction to insure the new stem cells get established as the dominant stem cell. With the conditions improving they are gradually removing me from the steroids. I can tell the difference in energy and feel better now that I am improving. They say this often happens about the 60 day mark which I am now approaching. It's a long journey, but my white counts and platelets are going up and blood tests show I'm headed in the right direction. As I approach day 60 (mid-June) some of the restrictions should be eased like, I may be able to go out to restaurant which I have not done since December. I would still be on a low-bacteria diet which means no fresh fruit or vegetables. At 100 days (latter part of July) I should come off the low bacteria diet and less restrictions about germs, crowds, etc. Right now we have been reduced to hospital outpatient visits about twice a week, which is nice. Next comes once a week and then once a month and finally every month or two for until eventually maybe once a year. That is what we are looking for so we can do some more travel adventures.

Our last stay in the Hospital had us on the opposite side of the unit so our view was on the back side, without the view of the city and Mt. Hood, but we have a pleasant view of houses, hillside, blooming rhododendrons and dogwoods, and the sunset (when the sun was out). We enjoy watching people and cars coming and going. One interesting sight is the med-evac helicopters coming in for a landing on top of the building next to us at the emergency room heliport. We watched a variety of helicopters, including a huge Coast Guard helicopter. They didn't come that often and the noise wasn't bothersome.

We have confidence in the doctors and enjoy the nursing staff and their sense of humor like writing "Welcome back!" on my event board. Everyone is so friendly and encouraging. The stem cell unit is almost like a family.

As an added complication, we were in the process of selling the house in Eugene, which we had purchased from my mother a few years ago. We were very happy to have 3 offers in the first week and accepted one. It's been a challenge trying to sign papers back and forth from Eugene. Brett has been helping us by e-mailing the papers back and forth for us. It's a great relief, of course, to have a sale pending! Latest news is that the house deal closed and the new owners should be moving in now. Recently we made the trip to Eugene to finish removing the last of my Mom's items. We sure are thankful for brother Roy and step brother Gary and his wife, Anne who were indispensible as we cleared 30 some years of accumulated items. You do not even want to know what our 3 car garage now looks like! We are sorting and donating all the time and it hardly seems to make a dent yet. When I'm stronger we'll be able to really get serious.

May 24 - Another Bump in the road

On Friday, May 20, we headed for the outpatient clinic, fighting the morning commute which Nancy LOVES (not!). Since she has to do the driving, she's had a crash course in commute driving in Portland. So far we're surviving that and she's doing very well. I'd been having fevers for the previous few days so they ordered more tests and, with the weekend coming, decided I needed to be in the hospital. We spent the rest of the day waiting for a room and were finally checked in by dinnertime. Am in my 4^th day here and they're still looking for the cause of my fevers, which go up and down. They're pumping me with antibiotics and running more tests. The doctors say this sometimes happens and they aren't always able to pinpoint the cause but we hope it will resolve itself. They also say most patients hit a couple of these "bumps in the road" along the way and they don't seem to be overly concerned. It's a long journey, but my white counts and platelets are going up and I'm headed in the right direction. I'm at Day 39 and they say at Day 60 (mid-June) some of the restrictions should be eased (like, I may be able to go out to eat, though still on a low-bacteria diet.) and at 100 days (latter part of July) I will be off the low bacteria diet and less restrictions about germs, crowds, etc.

We are in a different room, on the back side, without the view of the city and Mt. Hood, but we have a pleasant view of houses, hillside, blooming rhododendrons and dogwoods, and the sunset (when the sun is out). We enjoy watching people and cars coming and going. One interesting sight is the med-evac helicopters coming in for a landing on top of the building next to us, the Emergency Room heliport. We've watched a variety of helicopters, including a large Coast Guard helicopter. They don't come that often and the noise isn't bothersome.

We had hoped to be out by mid-week, but not sure now. It's hard being here again and not knowing what's going on, but we have confidence in the doctors and enjoy the nursing staff and their sense of humor (like writing "Welcome back!" on my event board.) Everyone is so friendly and encouraging. This unit is almost like a family.

As an added complication, we are in the process of selling the house in Eugene, which we had purchased from my mother a few years ago. We were very happy to have 3 offers in the first week and accepted one. It's been a challenge trying to sign papers back and forth from Eugene. Brett has been helping us by e-mailing the papers back and forth for us. It's a great relief, of course, to have a sale pending! `

Mothers Day and Stem cell update...

This year Mothers Day proved to be a bit different. We spent a quiet day at home after a busy day in Eugene on Saturday getting Mom's house ready to sell. Roy went down with us and we appreciated Gary and Anne coming over to assist as we finished the sorting, meaning lots of trips to the Goodwill Store to make donations. I was mostly in a supervisory and sorting capacity since I needed to sit a lot. We met with the realtor just before leaving Eugene and it should be listed now. We are hoping for quick and easy sale but realistically that has not been the recent history of house sales. We priced it aggressively, hoping to find a buyer. Sunday was Mother's day and it seemed like a laid back day most of the day. Brett came over for a visit and of course we had a few Skype calls from family. After dinner we were preparing to have some ice cream when we remembered it would be a good idea to take my temperature. It had spiked to 101 and instead of having ice cream we were packing for a trip to the emergency room. Upon arrival they started running blood and urine tests trying to find the source of what was causing the temperature. Brett followed us and stayed with us until after midnight. Then about 1:15 AM they decided to send us home as we had an appointment Monday morning at the outpatient clinic. Since I now am regaining my immune system my body is more able to fight small attacks. Monday morning came real early as we did not get home until 2 AM and had to hit the road about 7 AM. We slept a lot of the rest of Monday. We are glad we were not admitted to the hospital Sunday night! Monday blood tests showed counts are continuing to rise which is good news, The bone pain is something I wish would go away. It comes with stem cell transplant but it makes it very painful to stand or sit for very long, and my walking pace has really slowed down. We were told the pain should be going away soon. We sure hope so. I have a couple more posts almost ready and hopefully they will go up tomorrow, One is of Bertha's Memorial service and the other is local adventures.