April 29

Another week of waiting. Attended two support groups for both lung transplant and then one specifically for IPF. Then Bob attended a third one that is just for caregivers. All were very educational. Biggest issue fot attending any kind of event at UW Med Center is 'parking'.  Seems like for anything it is $9-15.  We can easily spend $40+ a week just on parking. 

Spent some time getting to know our neighbors. He is also awaiting transplant and needs two lungs. They are from Idaho.

We had dinner with a couple who had lived in La Grande several years ago and he was a transplant recipient last fall. Great evening with them and we learned a lot. One issue is Violet. We need to make better short term arrangements for her.

Betsy is starting pulmonary rehab next week, probably 3 times a week, which includes a treadmill and other exercise equipment at the Northwest Therapy Center. Need to be in the best shape possible going into the transplant. It appears that women are on the waiting list longer than men. Not sure why that is unless it has to do with lung size….

Purchased a cheap BBQ at Wal-Mart so if the weather EVER gets decent we can cook outside for variety. Bob had fun putting it together, all 400 pieces!!! The days seem to be going by fast and we do keep busy. Sun is shining as we send this but no telling for how long.  Might grill some brats tonight.

April 22

As of this afternoon I’m LISTED. … The RN in the transplant office said I am fairly high on the list and that my compatibility level is at 15% which means I am only NOT compatible with 15% of the population. She said 15% is VERY low and almost to a point of not mattering. They will do another blood draw in a month and do additional testing.
The sun is out today and Grandpa has shorts on. He was washing the RV! Still a bit cold to my liking but I’m planning to walk soon. Grandpa and Violet have signed up for training at PetSmart starting tomorrow afternoon. It is once a week for 6 weeks for beginner training and it will be good for both of them. Bob really needs the training..

Apr 15

Bothell, WA. Lake Pleasant site 225. Settling in.

No word yet from “the list”. It seems that the hold up is TriCare. They simply have dropped the ball. UW faxed them the docs two weeks ago and TriCare cannot find them or say they have not received them. TriCare also seems to have ‘phone’ problems and failed to call back after repeated calls to them. For some reason TriCare does not have the ability to contact UW, even though they have all the appropriate phone numbers. While it is difficult, we still have positive expectations of the process. Maybe it will improve next week. Will start the phone calls again to TriCare on Monday morning.

Jim/Marci/Cassie will be here on Sat and will be bringing up the Durango. Will be nice to drive a slightly smaller vehicle. They are bringing up their new camper. Violet will be happy to see Cassie.

Violet is adapting well. Using the bike to exercise her. She runs well, and usually stops half way around the lake to ‘poop’. Of course, Bob gets the crappy job of cleaning up the ‘poop’.

Today we bought her some more ‘Frosty Paws”. She smelled the bagk and just went wild in anticipation. She really likes them. For those with dogs who are only slightly spoiled, make the trip to Safeway, dog food isle, and check the freezer for them. Your dog will love you. ;-)

More next week.

April 10

It’s Saturday night and we are in Beaverton. Plan to leave here tomorrow afternoon and head for


Bothell, WA. Jim and Marci will bring the Durango up next week-end and have a chance to spend the night in their new Wolf Creek camper for the first time. 

Haven’t heard anything from the insurance company or the pre-transplant nurse regarding the authorization for transplant. Hope to hear something on Monday…. Will post something as soon as we hear.

Bob had some mods done to the RV when we were in La Grande. New awning arms and topper awnings for over the slides. Good changes. Now we just hope that the mods for Betsy work just as well.

April 4

Well, it appears that I am now close to being added to the transplant list. Had a call from Kim this morning, the RN with the pre-transplant team, and she said I am good to go except for getting confirmation from our insurance that they are authorizing a lung transplant. Once they receive that authorization then I can be added to the list. I do have an appointment with Dr. Raghu on Thursday and a couple of tests (pulmonary function test, blood work and ‘weighing in’ with the dietitian. We are planning to have the RV in Bothell sometime Sunday afternoon and hopefully I will be on the list sometime Monday!!!! Then it is a waiting game….

Thanks to everyone for your support. Couldn’t go through this without the love and encouragement of family and friends. We try to post something on Fridays. Of course, we will also have our cell phones and can be reached by e-mail.

This is an exciting, frightening, unbelievable time and we are just anxious to get on with it. We are trying to stay positive and looking forward to a good outcome.

April 2

It appears that the doctor’s haven’t been able to determine if I need the acid reflux surgery before or after the transplant. We have decided to pack as if we are making the temporary move to Bothell, drive to Jim and Marci’s on Wednesday next week and leave the RV there. Drive to Seattle and back on Thursday for the appointments and then maybe we will know what the next step will be. If they decide I can get on the list and do the transplant first then we will already be as far as Beaverton with the RV and can just go to Bothell from there. I am down 18 lbs. and continue to strive for another 10 at the very least. Have had a cold this week which is not a good thing when you are on oxygen!!

Violet went to the beauty parlor for a hair cut. She looks skinny, but it will be easier to manage now. Beautiful day here yesterday, almost up to 70. Today we had hail and a bit of snow and wind but the sun is out now.

Marci’s parents are on the mainland for some medical testing. It will be good to see and visit with them.