We returned from Seattle on Tuesday late afternoon. Thought I would update a bit on what is happening.
I had 6 days of tests and appointments at the University of Washington Medical Center. We arrived on a Monday and finished up the following Monday. Stayed in an RV park in Bothell, WA about 40 to 60 minutes from the hospital depending on time of day and amount of traffic. It was a nice park and we will probably stay there when we return. They have a special rate long term stays and for people who are awaiting a transplant…
Won’t go into the gory details of the kinds of tests they did but lets just say they should know just about everything there is to know about my insides. I still have a few things to finish up here and then they will meet (everyone involved at the medical center) and determine when I will be placed on the list. Was told I needed to lose 20 to 25 lbs. before they would place me but I also know my lungs are really bad (functioning at 1/5 of normal). The surgeon said I would be fairly high on the list which is good but it also means I have a big problem. He said I could go with 1 transplanted lung or 2 and I think that will be determined when they have a donor.
So I am dieting as if my life depended on it, cause it does! It is amazing how that can motivate you. Besides being a bit overweight and not being able to breath, I am in good health otherwise so that is a plus.
We are probably going to trade in our Arctic Fox 25R travel trailer for a 295E 5th wheel just because it has so much more room and we will be living in it for quite a few months, both before and after transplant. Lots of things to think about and decisions to make.
Not sure of the timeline but I’m hoping we are back in Seattle by the first part of March if I can lose enough weight by then. Thank you all for your support. I/we really appreciate it and couldn’t make it through this without our family and friends.
Thursday, January 27, 2011
Friday, January 14, 2011
January 2011 started a little rough. Betsy’s lung disease took for a major nose dive. The dr’s now have her on oxygen 27/7. We took a quick trip to Spokane for a heart cath to make sure her heart is strong enough for a lung transplant. Her lung disease issue is now at the forefront of our thoughts and actions. Heart was good… Of course I and many others could have told them that. Betsy has a heart of gold.
Here is some stuff relating to the lung disease. We decided to post it here and just update on site vs email to lots of folks. No sense in repeating stuff. This started a few years back as an allergy to wood dust mold, RV related (we think). We really think it was a result of Bob putting a small hole in the roof and then a leak.
Betsy has been seeing a local Dr, a lung specialist is Walla Walla, WA, and more recently, one of the nations leading lung Dr’s in Seattle.
Enjoy life while you can … ‘Do Not’ wait for those ‘golden’ years. Most of us that are slightly older than the rest, will easily admit, they are not that golden. Maybe silver as it the color of hair. ;-)
Violet now weighs in at about 35 lbs. Doesn’t miss a meal.
Here is some stuff relating to the lung disease. We decided to post it here and just update on site vs email to lots of folks. No sense in repeating stuff. This started a few years back as an allergy to wood dust mold, RV related (we think). We really think it was a result of Bob putting a small hole in the roof and then a leak.
Betsy has been seeing a local Dr, a lung specialist is Walla Walla, WA, and more recently, one of the nations leading lung Dr’s in Seattle.
Enjoy life while you can … ‘Do Not’ wait for those ‘golden’ years. Most of us that are slightly older than the rest, will easily admit, they are not that golden. Maybe silver as it the color of hair. ;-)
Violet now weighs in at about 35 lbs. Doesn’t miss a meal.
June 2010 in Seattle.
Betsy writing. It appears my lung problem is worse than I thought. They wanted me walk at a casual pace up and down the hallway for 6 minutes while they measured my oxygen level but stopped me after 4 minutes because it was down to 80% (saturation rate) and they don’t want it to drop below that level (it should be in the 90’s). I didn’t even get a chance to do the stair test… I didn’t feel out of breath so I didn’t think there was a problem! Dr. said that because of my history of sleep apnea my brain doesn’t recognize that my oxygen levels are dropping so it doesn’t “kick in” that I need to breath harder.
Anyway, after going over the tests, CT scan, etc. he is talking about a lung transplant. The next step is to make an appt. with the Walla Walla Dr. in about 2 weeks to go over my options regarding a lung biopsy and whether or not I want to do that. It would tell me if I have chronic hypersensitivity pneumonitis with pulmonary fibrosis tendencies or if I have the idiopathic pulmonary fibrosis. There is really no treatment for either one although the life expectancy for the idiopathic pulmonary fibrosis is 2 to 4 years after diagnosis without the transplant. I also have to have a complete workup of my heart by a cardiologist because if you don’t have a strong heart they won’t even consider the transplant. I will need to go back to Seattle in December or January to discuss what happens next and to attend a 2 ½ hour ‘orientation’ regarding the transplant. Evidently they give these at least once a month so they must do quite a few!
I have to say this doctor visit was quite a shock to us and we are still trying to take it all in.
At the time of referral to Seattle, I was in denial that it would be something I would even need to consider. To be honest, right now I don’t like any of the options…
So, we spent the week-end with Jim, Marci and Cassie and Jim said he has been wanting to buy us a dog for a long time. Someone he works with had some golden doodle puppies, 8 weeks old. We went to see them and all fell in love with Violet!!! She is so sweet and VERY smart. Bob and I decided it was a good time since we both need a “therapy” dog to help us through the uncertainty ahead. We got her yesterday and brought her home to Cove today. We stopped by Libby and Richard’s on our way home to pick up Bell since they will be out of town and Bell is a bit put out about Violet! She will get used to her though and it will be good for Violet to have a friend.
Anyway, after going over the tests, CT scan, etc. he is talking about a lung transplant. The next step is to make an appt. with the Walla Walla Dr. in about 2 weeks to go over my options regarding a lung biopsy and whether or not I want to do that. It would tell me if I have chronic hypersensitivity pneumonitis with pulmonary fibrosis tendencies or if I have the idiopathic pulmonary fibrosis. There is really no treatment for either one although the life expectancy for the idiopathic pulmonary fibrosis is 2 to 4 years after diagnosis without the transplant. I also have to have a complete workup of my heart by a cardiologist because if you don’t have a strong heart they won’t even consider the transplant. I will need to go back to Seattle in December or January to discuss what happens next and to attend a 2 ½ hour ‘orientation’ regarding the transplant. Evidently they give these at least once a month so they must do quite a few!
I have to say this doctor visit was quite a shock to us and we are still trying to take it all in.
At the time of referral to Seattle, I was in denial that it would be something I would even need to consider. To be honest, right now I don’t like any of the options…
So, we spent the week-end with Jim, Marci and Cassie and Jim said he has been wanting to buy us a dog for a long time. Someone he works with had some golden doodle puppies, 8 weeks old. We went to see them and all fell in love with Violet!!! She is so sweet and VERY smart. Bob and I decided it was a good time since we both need a “therapy” dog to help us through the uncertainty ahead. We got her yesterday and brought her home to Cove today. We stopped by Libby and Richard’s on our way home to pick up Bell since they will be out of town and Bell is a bit put out about Violet! She will get used to her though and it will be good for Violet to have a friend.
The rest of 2110
September brought a large home ‘to do’ list with some search and rescue stuff mixed in.
October took us to the Owahee Desert (pronounce the same as Hawaii) for some UTV riding and camping. We then drove to Seattle for a meeting with a lung specialist, Dr Raghu. The outcome of this meeting was a heads up on a potential lung transplant for Betsy. She has a serious lung issue and that will be a later post.
We stopped in Beaverton for some family time and our family grew by one. Violet has joined us. Golden Doodle and cute. 12 lbs at 2 months. We think she might grow a little.
Drove home for a few days and then to Garibaldi on the north coast for fish camp and good time with friends. Then south for a few days in the Newport area. Quick stops in Aumsville, Beaverton and then home.
November is Elk Camp time and it was different for all because of a visitor from England. One elk, one broken ankle (not us) and lots of good tequila. Fresh snow almost every day. Some more SAR rescue stuff and then turkey time in Cove. Did our first oil fried turkey, and then one on the Traeger BBQ. Taste test… Traeger won.
December found our son and family flying to Maui for Christmas, and we to the Salem area for time with that part of the family. We stayed in Aumsville (tornado city) and then on to Lincoln City for a few days. Stopped in Beaverton for two nights and then the icy drive to home (Cove).
October took us to the Owahee Desert (pronounce the same as Hawaii) for some UTV riding and camping. We then drove to Seattle for a meeting with a lung specialist, Dr Raghu. The outcome of this meeting was a heads up on a potential lung transplant for Betsy. She has a serious lung issue and that will be a later post.
We stopped in Beaverton for some family time and our family grew by one. Violet has joined us. Golden Doodle and cute. 12 lbs at 2 months. We think she might grow a little.
Drove home for a few days and then to Garibaldi on the north coast for fish camp and good time with friends. Then south for a few days in the Newport area. Quick stops in Aumsville, Beaverton and then home.
November is Elk Camp time and it was different for all because of a visitor from England. One elk, one broken ankle (not us) and lots of good tequila. Fresh snow almost every day. Some more SAR rescue stuff and then turkey time in Cove. Did our first oil fried turkey, and then one on the Traeger BBQ. Taste test… Traeger won.
December found our son and family flying to Maui for Christmas, and we to the Salem area for time with that part of the family. We stayed in Aumsville (tornado city) and then on to Lincoln City for a few days. Stopped in Beaverton for two nights and then the icy drive to home (Cove).
Hot August evenings
August found Granddaughter in Cove for a couple of weeks. She entered her first attempt at a counted cross stitch project and won a blue ribbon. She was pretty happy. Then we were off on another adventure, this time to Utah. The Lagoon Amusement Park in the Salt Lake area. 2 days and Cassie / Gpa rode almost every ride at least twice (especially the big ones). Cassie did ride two that Gpa would not get on. Gutsy kid. From there we drove to Marysvale, Utah for their second UTV Jamboree. Fun. Cassie and gpa took a long guided ride. Probably won’t do that again. It seemed like the ride leaders stopped every half mile to keep the group together. After the ride, I was able to go to the main area and see lots of RZR’s with modifications. Good ideas.
We left Marysvale a day early as it was hot and we had no power for ac. Decide to head west to
Great Basin National Park and did the cave tour. Cassie seemed to have fun exploring. We camped at 7000’ that night, and briefly drove to 10, 000’. That was a bit of an issue for Betsy. She requires oxygen when sleeping at night. Thin air was a challenge. As we left camp, the driver made a slight mistake. Forgot to put up the steps on the trailer (crunch). Was able to do some hammer adjustments and the steps worked again, sort of.
On to Wendover, UT for Bonneville Speed Week 2010. Spent the first night at the KOA. Swimming pool was yellow/green. Not something any of us will get into. Got some sleep. Cassie and Gpa were on the salt at 5:30 am. Cassie had watched some video of the event, including “Worlds Fastest Indian”. She seemed impressed. We spent about 3 hours at the start line. Cassie was impressed with the number of women drivers and crew members. We were able to see the Harris Family Roadster (Lincoln Harris driving) make a run. At over 230 mph, he had engine problems and had to shut down. Now to ship the car back to New Zealand.
We had a commitment back in Wendover to move the RV out of the KOA. Moved to a good camp on the sand area just off the salt (with 3000 of our very close friends), then the three of us drove back to the pit area. Bought some t-shirts and stuff. Just about then, we got a call from our other NZ friends (Newport’s) and they were setting up camp next to us. Back to camp for some reunion time and a good cold beer.
Back to the pit area for a tour. That evening, we had some more beverage, conversation, story telling (lies), and just a good time. Russell and Sue, with their friends John and Trish, were on a quick one month motor home vacation of the South Western USA.
One more trip to the race track at 5am. Sunsets out there are just beautiful. After a brief stop at the start line, we moved to the pit area. Cassie got to see some vehicles go by at 150, 250, and 400 mph. I think that last car really impressed her.
Time to say “see ya later” to our friends and get on the road towards home. Drove to Farewell Bend State Park that night and then on to Cove and home the next day.
Long trip, good times. Two days of rest, and we are off again. This time to Paulina Lake in Central Oregon for a family gathering. Once again, another good trip. Cassie headed back to Beaverton with her parents and a new school year. She had a busy summer.
We left Marysvale a day early as it was hot and we had no power for ac. Decide to head west to
Great Basin National Park and did the cave tour. Cassie seemed to have fun exploring. We camped at 7000’ that night, and briefly drove to 10, 000’. That was a bit of an issue for Betsy. She requires oxygen when sleeping at night. Thin air was a challenge. As we left camp, the driver made a slight mistake. Forgot to put up the steps on the trailer (crunch). Was able to do some hammer adjustments and the steps worked again, sort of.
On to Wendover, UT for Bonneville Speed Week 2010. Spent the first night at the KOA. Swimming pool was yellow/green. Not something any of us will get into. Got some sleep. Cassie and Gpa were on the salt at 5:30 am. Cassie had watched some video of the event, including “Worlds Fastest Indian”. She seemed impressed. We spent about 3 hours at the start line. Cassie was impressed with the number of women drivers and crew members. We were able to see the Harris Family Roadster (Lincoln Harris driving) make a run. At over 230 mph, he had engine problems and had to shut down. Now to ship the car back to New Zealand.
We had a commitment back in Wendover to move the RV out of the KOA. Moved to a good camp on the sand area just off the salt (with 3000 of our very close friends), then the three of us drove back to the pit area. Bought some t-shirts and stuff. Just about then, we got a call from our other NZ friends (Newport’s) and they were setting up camp next to us. Back to camp for some reunion time and a good cold beer.
Back to the pit area for a tour. That evening, we had some more beverage, conversation, story telling (lies), and just a good time. Russell and Sue, with their friends John and Trish, were on a quick one month motor home vacation of the South Western USA.
One more trip to the race track at 5am. Sunsets out there are just beautiful. After a brief stop at the start line, we moved to the pit area. Cassie got to see some vehicles go by at 150, 250, and 400 mph. I think that last car really impressed her.
Time to say “see ya later” to our friends and get on the road towards home. Drove to Farewell Bend State Park that night and then on to Cove and home the next day.
Long trip, good times. Two days of rest, and we are off again. This time to Paulina Lake in Central Oregon for a family gathering. Once again, another good trip. Cassie headed back to Beaverton with her parents and a new school year. She had a busy summer.
May - Jun - July
May, Deck/patio project – No travels
June brought the Annual Union County Stock Show Parade, for Search And Rescue and as always, a fun event. We started out at the Northwood Owners Association (Arctic Fox) at the Hot Lakes RV Park, then hit the road for the Grant Morrow OHV Park Poker run. This is a annual event and the proceeds go to the Grant County EMS services. A quick trip back to the AF Rally, then home for clean up. We traveled to Portland for a few days while Bob had some back pain issues addressed at the VA Medical Facility.
July brought a finish to the deck project and our annual ‘beach party’. Good times by all.
June brought the Annual Union County Stock Show Parade, for Search And Rescue and as always, a fun event. We started out at the Northwood Owners Association (Arctic Fox) at the Hot Lakes RV Park, then hit the road for the Grant Morrow OHV Park Poker run. This is a annual event and the proceeds go to the Grant County EMS services. A quick trip back to the AF Rally, then home for clean up. We traveled to Portland for a few days while Bob had some back pain issues addressed at the VA Medical Facility.
July brought a finish to the deck project and our annual ‘beach party’. Good times by all.
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