Dec 30, 2011, almost new years eve

On Monday afternoon (26^th), Bob was ‘attacked’ by a huge dog…    Violet… was running around and would come right at him, very close and fast.  Bob moved the wrong way at the wrong time, and a 60 lb dog did a full block at knee level.  Put the old guy down hard and he stayed on the ground for about 4-5 minutes.  Knocked the wind out of him.  Some minor blood, a bruised rib cage, and a very sore arm..  Violet understood there was an issue and she stayed by him the whole time.  Good dog..  Just strong.  The old guy will be more careful in the future. 

Ok, off to Beaverton.  Bob packed us up on Wed afternoon, and had 13 bottles of Oxygen loaded.  We left early Thursday morning and stopped at the Tacoma Mall to meet our friends Bill and Mary from Gig Harbor.  They had offered to finish a quilt I had started over 10 years ago!  The top of the guilt was done but it needed backing, binding and quilting.  The work they did was fantastic!  I love the backing they picked out and they used their new computerized quilting machine to quilt fantastic woodsy shapes (trees, moose, elk, etc.) to go with the quilt theme.  It looks so awesome!!  Not only did I think I would never see it finished, I could not have imagined it turning out so wonderful.  Many thanks to them from the heart! 

On Friday morning, Bob relented on the rib pain and made a visit to the VA Emergency Room.  Xrays and dr visit…  nothing broken, but it may be very sore for a few months.  Portland VA Hosp was great, but I got there at 7:15 am.  Must have been a slow time. 

We had a great Christmas in Beaverton with Jim, Marci and Cassie.  They could not have done more to make this Christmas any better!  Lots of great food, decorations and a fire in the fireplace to enjoy, and quality time spent together (not necessarily in that order!).  Violet was so excited to see Cassie and of course spent hours harassing the cat. 
We also met our friends, Mike & Susie, at Olive Garden on Friday for lunch and had a nice visit with them.  They brought a bag of goodies that we are still enjoying! 

Cindy & Ron stopped by on Christmas afternoon on their way to the coast for a few days.  It was so nice to see them.
Now we are back in Bothell settling in.  Thinking positive thoughts about getting a lung soon and starting the recovery portion of this adventure…  I have been on the list over 8 months now and feel it is getting nearer to the time when we ‘get the call’…  Have an appointment with Dr. Raghu on the 11^th and continue to work at therapy.  It is a struggle but I do the best I can and try to keep at the same level as long as possible. 

Wishing a Happy New Year to all and hope it is a good one!  Hard to believe we are finally going into 2012 and it will be another interesting year I’m sure!

Dec 17

We have decided to drive to Beaverton for Christmas.  Plan to leave here on Thursday, Dec. 22, and drive back the following Monday or Tuesday.  I will be able to stay on the transplant list during that time and they will try to give us enough time to travel back if a lung becomes available.  Have to spend time with our granddaughter!!! 
Trying to stay healthy but sometimes it is difficult.  Felt like a cold coming on this week so didn’t go to therapy on Wednesday.  Felt better on Thursday so Terri came by and we spent time knitting and chatting.  It was great to visit….

On our way to Beaverton we will make a quick stop in Tacoma to meet with Mary and Bill.  They completed the quilt so we plan to pick it up. 

Tomorrow, Violet goes to the beauty parlor at PetSmart for a groom and then a pic with the Santa Claws guy.  They take donations for the local animal shelter.  Will try to post a picture if we get a good one! 

A few weeks ago I was thinking that I am living every woman’s nightmare!  Being in a place that has unlimited shopping with everything you could ever want just around the corner and I don’t have enough breath in me to shop!  Is that sad or what???  Of course we are saving money so there is a bright side I guess…  After surgery look out! 

I know we keep saying this but it is amazing how quickly the weeks fly by!!!  Soon it will be 2012 and I am counting on getting a lung early in the year!!!!  We just have to get going on this so we can come home. 

We probably won’t post a blog next week since we will be visiting in Beaverton.  Want to wish everyone a very happy holiday season and thanks again for your support and encouragement.  Couldn’t get through this without it!

Dec 9

Another busy week in Bothell….
Enjoyed a great dinner with Dan and Terri on Sunday evening.  On Monday Libby, Richard and Bell arrived in the afternoon.  We had a nice visit and played some Pegs & Jokes (the girl’s rule!!!). 

Monday during the night the concentrator was cutting out and both dogs alerted to something being wrong.  Bob was ready to call Lincare but decided to check out the circuit breaker first and discovered that was the problem.  He put me on an oxygen bottle while he investigated and temporarily plugged the concentrator into another circuit.  An hour later I woke up to no air!!!  He had forgotten to put me back on the concentrator and the oxygen bottle had gone empty.  Of course I accused him of trying to kill me again! 

Tuesday morning we went to the Maltby Café for breakfast and then Libby and Richard left for home.  Poor Violet whined and howled when they left, she was so sad.  She loves spending time with her friend Bell. 

Thursday, one of the transplant team nurses called to say the transplant committee had met to discuss my ‘case’ and that I am still listed.  They have a plan in place to start me on IV antibiotics as soon as I show up at the hospital for transplant.  This is due to the low level bacteria that they have been unable to treat.  The team went over all the tests and doctor reports from the past few months.  I will need to see Dr. Raghu again in January and schedule an echocardiogram too. 

Due to freezing fog in the Willamette Valley, Mike and Suzie canceled their visit on Thursday.  Hope to see them in the next few weeks though.  It is not worth taking chances with bad weather!!! 

Friday morning found us saying goodbye to Mark and Kathy as they leave for Wasilla, Alaska…  Mark is driving the motor coach up and Kathy is following in a new pickup.  Mark is post lung transplant 3+ years.  For those who have seen the UW video on transplants, they are the stars of the video.  We wish them a safe journey north…

Friday afternoon found Rick and Katie here for a quick visit.  Katie’s sister Betsy and family live in the area. 

Saturday we spent the day helping Santa by wrapping presents and finishing up this blog note. 

Dec 3

Good morning….  Bacon is on the Traeger smoking..   Started just before 6 this morning.  About 10ish, the flank steak will go on for dinner tonight.  It’s a slow cook BBQ day. 

Hard to believe that December is here and Christmas is just around the corner.  We have been in Bothell just shy of 8 months.  Still no lung yet, but UW is progressing at an average of one a week.  Finding donors that have undamaged lungs is the biggest issue.  For Bets, it is finding a shorter donor.  Just have to wait. 

Violet spent a morning in the beauty parlor for a bath and brushing.  On the 18^th of Dec, she has another appointment for grooming, then she gets in line to see Santa Claws and have some pictures.  We will post one of those eventually. 

Betsy here…  Managed to make it to therapy 3 days this week and felt good about that!  One of the women that I met at therapy got a ‘new’ lung last Sunday and is doing well.  Have to confess I went through many emotions when I heard she had her transplant.  She had only been on the list 7 weeks and using half the oxygen I do.  I am very happy for her but was feeling a bit sorry for myself for a day or two…  Managed to work through it though and back to my positive attitude once again.  What a roller coaster ride this has been!!! 

Invited to Dan and Terri’s for dinner on Sunday and we are looking forward to that.  Libby might visit next week and Mike and Susie (long time friends from Salem) are planning a visit on Thursday. 

Have a great week everyone!!!   

Nov 25

We survived Turkey Day.  Had a nice dinner with other RV folks in the yurt here at the park.  There were about 25 of us and plenty of food and socializing.

The week was uneventful except for an unexpected trip to UWMC for a procedure to look inside my bladder.  There is still a small amount of bacteria even after the latest round of antibiotics and the Urologist wanted to see inside to make sure there wasn’t a place where bacteria could be lurking.  She said it looked great and she couldn’t find anything wrong.  The procedure wasn’t bad, especially after the two valium they gave me!!!  She will send results to Dr. Raghu and recommend that nothing further be done so we will see.

I did use an electric shopping cart for the first time at Costco on Monday and didn’t run into anything or anyone….  It was great!  Tried to shop at Barnes & Noble and Pier 1 but they were both a real struggle.  Dan & Terri have loaned me a walker that I will try next time so I can sit down when I need to. 

We had quite a storm for a few days this week with heavy rain and wind.  No major problems here in the park and we were comfy in the RV.  Violet now has a bright yellow raincoat!!! 

The new Safeway store across the road is open and Bob has been there several times already.  I will check it out sometime next week and maybe use one of their electric carts….

We want to wish Kathy and Ric a great trip south and then on to Nebraska.  Drive safe.  Please stay in touch. 

Hope everyone is enjoying the long week-end.  More to come next week!  

Nov 19

Another week has come and gone.  

Sunday, Mary and Bill from Gig Harbor paid us a visit, we had lunch at the Country Café right up the road, and shared a few stories. Bill helped Bob measure the side of the RV to identify some frames because we had an issue with the awning anchor coming away from the wall.   We really enjoyed the time with them. 

Not a lot of changes.  Therapy and shopping were a struggle this week but at least I’m still breathing.

Missed therapy on Friday, and spent the time at a Super Wal-Mart in Marysville, about 20 miles north of us.  Took the scenic route home and drove past the Naval Station in Everett.  Carrier and 4 smaller vessels in port.  Nice place, but Bob really does not miss it.. 

Tonight should be the coldest yet, but then a heat wave will hit.  Might get some temps in the 50’s.   Snow was predicted, but the weather people are rarely correct.  

Again, a quiet week.  Can’t believe it is almost Thanksgiving already!  Who would have thought we would still be waiting here….  Wishing everyone a great turkey day and be sure to count your blessings!!!! 

November 11, 2011 Veterans Day

This has been a great week!  Last week-end we had a visit from Jim, Marci, Cassie and their friend Sarah.  Marci fixed a great breakfast Saturday morning and then the girls had pedicures in the afternoon.  Bob and Jim went to the pier and dreamed of Yachts and winning the lottery.  Saturday evening we went to Bonefish Grill for an awesome dinner including wine and dessert!  It was wonderful.  
We came home after dinner and ‘the kids’ went partying at a local bar that has live music.  They were a little concerned about being Oregonians since the Ducks had just tromped the Huskies so they made a point of telling people they were Beaver’s! 

Monday evening we got together with Kathy and Mike from Post Falls, ID for dinner at Applebee’s.  Mike is doing well and they were just here for a routine doctor visit.  He has had a few bumps in the road but looks really good.  It was great to see them.

I had a doctor visit on Monday with the Urology Clinic.  They can’t find any problems except for the low level bacteria that I can’t seem to get rid of.  They have once again put me on an antibiotic for 10 days and I’m hoping this will do the trick. 

Tuesday was the Lung Transplant Support Group meeting.  Always a good thing because it gives me hope seeing all of those who have received ‘new’ lungs and hearing how they are doing.  A recent recipient was on the list for over 3 years.  Yes, there are sometimes issues but usually not anything they can’t deal with.  Being able to breath without thinking about it would be worth the hurdles. 

Wednesday at Pulmonary Rehab was the best effort I have been able to do in about a month!  Managed to do all of the machines and all of the exercises so that gave me hope.  Of course, I won’t ever get better but I just don’t want to keep getting worse! 

Jon & Ched came for a visit on Thursday and it was great to spend some time with them.  Ched brought Pilipino food for us (we are having it for dinner tonight) and they took us to lunch at Applebee’s.  It was great.   Bob and Jon shared stories (not lies) of their past...  ;-)

I received so many birthday cards and wishes (internet, Face Book, etc.) and feel so loved!  Thank you all for your support and for thinking of me!  I played the Beatles song “When I’m Sixty-Four” since that is what I am and I have been looking forward to that for awhile.  Not being 64 but playing the song!!!!  Jim, Marci and Cassie gave me a large box of Moonstruck Chocolates and they are fantastic!  Have to be careful I don’t eat too many all at once. 

Cassie turned 13 yesterday and is at Disneyland celebrating!  Jim & Marci’s friend Andrea offered to take her again (they have been 2 or 3 times together) and we know they are having a fantastic time!

It looks like we have a quiet week ahead of and no visitors.  Probably good considering the weather ahead of us this week. 

We had a young couple visit us that are considering a rv model like ours.  We were able to give them a tour and they had a lot of questions.  They had a Nash trailer a few years ago and want to make a move up in the world.  

November 4

Just completed a much better week!!!  Feeling better both physically and emotionally thanks to all the good vibes from everyone!!! 

Libby and Irene were here for a couple of days and we had a great time visiting.  Libby, Bob and I went to Elizabeth & Alexander’s “tea room” for lunch and that was quite the experience.  Very fancy and expensive but we had fun.  Not exactly a ‘guy’ place but Bob was a good sport about it! 

Sunday Mark & Nancy came to visit and that was nice too.  We went to Applebee’s for lunch and enjoyed our time together. 

Then we spent Halloween eve with Dan and Teri for a great dinner and conversation.  They are a strong support for us.  

Thursday Sheri & Peggy were here and we took them to the Maltby Café.  It was so good to see them and they drove all the way from Baker City just to see me (us).  What a treat! 

Found out who gave me the ‘courage’ stone and it was Jan K. from Cove!  She also sent a box full of little birthday gifts that I am anxious to open as I’m sure it will be entertaining!  What wonderful friends we have…. 

Got flowers from Cindy, Ron, Cathy, Ray and the boys today.  Tomorrow I am 64 and I have received so many nice cards.  Jim, Marci, Cassie and their friend Sarah will be here this evening for the week-end.  The girls have a pedicure appointment tomorrow at 2:00 and Jim made dinner reservations for tomorrow night at Bone Fish Grill.  It will be fun.  Marci has breakfast planned for tomorrow and maybe we will go to the Maltby Café on Sunday morning.  Looking forward to spending some time with them. 

Sunday afternoon Kathy and Mike will be returning for a doctor visit on Monday.  We are hoping to get together with them while they are here.  Anxious to hear how Mike is doing… 

Well, thanks again everyone for your words of encouragement and helping us get through this.  We honestly couldn’t do it without your support! 

This coming week will have a doctor appointment on Monday, Lung Transplant support group on Tues and more of the Pulmonary Rehab workouts.

October 28

Bob writing this time.   Interesting week so far…  Monday noon’ish until dinner time was spent in the UW Emerg Dept.  Betsy was not feeling good combined with some ‘fluttering” in the chest.   Lot of testing including EKG, and more blood drawn…  They decided no issues.  Interesting part was a decision by the ER Dr to seek advice from the Pulmonary group…  5 minutes later and three of them were in the room.  It got their attention..   Again…  ultimately it was decided that it was probably related to a cold or similar..  Home for dinner.. 

Betsy is still not feeling well but trying to get back to the rehab group to stay on top of the physical fitness end of it. 

Then the week got worse, but ended well.

Bets had a melt down on Tuesday, and we spent some time questioning what we are doing in Seattle, then the full gambit of consequences and the ramifications of leaving.  We briefly discussed ‘what if’ they cannot find an appropriate donor, working with hospice, and a lot of other stuff.  Neither of us has been sleeping well for the past few weeks.  But, the week got better.  Visitors arrived, moral improved, and then Betsy and Libby went shopping.  She must be feeling better.  They spent over an hour in Jo-Ann Fabrics.

Her oxygen consumption still is still increasing.  Showers and morning dressing are still challenges and are probably the most difficult time of the day.  It is difficult from a caregiver / spouse viewpoint to watch her decline physically.  In February, we will have been married for 42 yrs.  We started dating just over 49 years ago.  We are getting a little older

More visitors expected in the next few days and a dinner engagement with Teri and Dan.  Promises to be a better week. 

Saturday, October 22

Well, it seems they never really took me off the list this last time.  The Doctors are still at odds about the infection, but at least I’m still on the list for now and they will have to make the evaluation if a lung becomes available.  Have an appointment with a urologist on the 7^th and not sure what that is all about.  Time will tell.

Much slower week but that is about to change for the next two weeks.   Libby and Reno, then Nancy, then Sheri and Peggy, then Jim/Marci/Cassie and their friend Sara.  Maybe in the middle somewhere a lung will come along.

Violet spent Saturday morning at the beauty parlor (PetSmart) and got a bath and groom.  She looks good, but appears to be glad to be home with us. 

Had a nice visit with Dan and Carlyn who are making their way back to Kansas after spending several months with family on Vashon Island.  It as good to see them again and glad they are able to make use of our place in Cove on their journey.  They had a ‘problem’ with some debris on the road near Pendleton, so will spend a few extra days in Cove awaiting repairs. 

Bob bought a nice notebook size computer with lap desk so I can sit on the couch and write my life story, something I have been wanting to do for Cassie.  It is wonderful and good therapy for me.  Guess you could say this was a high priority item on my bucket list! 

To whoever left a polished stone with the word ‘courage’ on it on the front seat of our truck before we left home in April, thank you so much!  I keep it with me always and would love to know who was so thoughtful.  It means a lot to me….

My sister broke her ankle in 3 places while visiting her daughter in Tacoma and had to go home to have surgery.  She now has screws in her ankle and we hope for a quick recovery!  Bob hopes her screws aren’t very loose.. 

Thursday, October 13

On again, off again, on again, ‘off again’….  Saw Dr. Raghu today and he said I cannot have a lung transplant until this infection (bacteria) is completely gone so it appears I am off again for now.  Met with an infectious disease doctor who requested another urine test and is scheduling an ultra sound, possibly tomorrow.  They want to rule out any kidney stones and such even though I don’t have symptoms.  Once that is done they will determine the next course of treatment, possibly IV antibiotics for a couple of weeks.  Had a PFT (pulmonary function test) and it was the hardest one yet.  Thought I was going to pass out right there but managed to get through it.  Function has gone down since the last test which was only a month ago and I’m not surprised.  It is getting harder and harder to take a shower and dress in the morning.  I put it off as long as I can!!!!  Unfortunately, (or maybe it’s a good thing) most days we have somewhere to be and I have to get moving earlier than I would like! 

We really enjoyed our visit with Mary Jo & Jerry.      Visited, ate good food and played some cards!  Even made a shopping trip to Joann’s for more yarn and that was fun.  Had lunch with John Reed (a friend of Mary Jo & Jerry’s who we met on our trip north) who had a kidney transplant about a month ago and it was good to see him also.  He is here from Alaska and hoping to go home soon.

We will post another blog as soon as we hear what the next step will be.  Dr. Raghu is doing everything possible to make things happen so I can get back on the list.  He had the infectious disease doctors come to his clinic to see me and they are all working towards one goal: getting me ready for a transplant.  I think Dr. Raghu is getting a bit concerned that I am declining at a faster pace and he wants to make sure I get a chance for a transplant.  More to come……

Bob’s watering / flower job is quickly coming to an end.  Weather / season changes are doing in the flowers.  They are sort of dying on the vine?  No more breakfast or potlucks to keep him busy   Gotta figure something else for him to do..  J  

Thanks again to all of you.  Your support means a lot.  

Saturday, Oct 8

As of today I have been reinstated on the lung transplant list.  The pre-lung transplant nurse, Kim, says I am ‘right up there’ on the list and ‘in a good spot’, whatever that means….  She says they have been busy the past 3 weeks but didn’t indicate how many transplants have been done. 

I will need to follow up with several doctor appointments regarding the low count bacteria that is still indicated by the tests.  Also need to have a urine test every Monday until this issue is resolved.  Whatever it takes….. 

Nephew Rick and wife Katie came to visit yesterday and it was great to see them.  Katie’s sister and family live fairly close and they are visiting them this week-end.  Found out Katie’s brother-in-law works right across the road from the Maltby Café!!! 

Mary Jo and Jerry will be here tomorrow for a few days.  It will be great to see them too and spend some time together.  They are bringing their motor home and will stay in the park here.  While they are here, we will go with them to visit our friend John from Alaska, who just had a kidney transplant

Our granddaughter Cassie auditioned for Honor Choir and was accepted so that was exciting news!  We are very proud grandparents….  

Tomorrow is the monthly pancake breakfast in the park.  Of course Bob will be helping with that and he does enjoy himself.  The staff appreciate him too.

Thanks to everyone for your love and support during this ‘interesting’ segment of our lives.  Family and friends are what keeps us going and we couldn’t get through it without you all.   

Sunday Oct 2.

We made it back from Cove.  We took a full car load home, and returned with another full car load.  ??  Not sure how that happened, but hopefully the return load will be better used than the previous.  

It was good to be home, somewhat.  Not knowing when we will return was difficult.  Seeing our great neighbors was great.  Violet was really curious about the mules, horses, and cows.  The deer really had her attention.  She had an evening play with Bell.  The trip back here must have been exhausting because she slept all night.

Bets had quite a bit of difficulty in breathing at the higher altitude (3500’).  The concentrator would not put out full capacity for some reason and that hampered movement around the house. 

Betsy here….  Home was bittersweet for me.  It was great to be home in our great surroundings but I couldn’t do anything and it was difficult just moving from place to place.  Have determined that I will be unable to go home again until I get a ‘new’ lung.  It is just too difficult.  We did get into the dentist to have our teeth cleaned thanks to the wonderful staff at SeaBrite Dental.  It was very short notice but they managed to fit us in.  We also had haircuts by our favorite hair person, Ginger.  Had dinner with Richard and Libby at Mamacita’s and saw our neighbors/friends, Wayne & Rosemary and Ken & Crystal who have been watching our house for us.  We appreciate everything our friends do for us while we are gone!  It makes being here easier.  Didn’t get a chance to see many people since it was so difficult for me to get around and we are sorry about that. 

Have a doctor appointment this afternoon and hoping to be back on the list soon.  I will go back on the list at the same place I was.  It is not a first come, first served kind of thing, it has to do with lots of other factors relating to your condition.  Will post another blog when I’m back on the list or next week-end, whichever comes first…..

September 28 Mid week

Mid-week update!  As of Monday Betsy was temporarily taken off the transplant list due to the persistent UTI which has been resistant to most of the antibiotics.  Hoping the newest one works….  Anyway, we have decided to take a very quick trip home for a few days since this might be our only opportunity for awhile.  Plan to leave this afternoon (Wed) and return Sunday.  Making a doctor appointment for Monday to be retested for the infection and hoping to be back on the list after that.  Not sure we will have much opportunity to see many people since we won’t be home long and limited on oxygen bottles.  If we miss you, we are sorry….  

Sept 23

Still waiting and waiting.  The UTI came back (or never fully went away) and now waiting on some test results so they can get the right antibiotic.  With some of the medications taken, some antibiotics are not only useless, but potentially harmful.  Hopefully it will all be cleared up next week.  If the infection cannot be contained, a surgery for transplant might have to be postponed (assuming a correct size donor lung becomes available).  
Changes, again.   Bob will not be going to Cove this weekend.  Libby is sick enough that she should not be a caregiver for Betsy.  The trip will wait a few days.  Cove stuff is minor.  Keeping Betsy as healthy as possible is where we need to be. 

Violet made a trip to the beauty parlor..   got a good bath, brushing and tail trimmed.  Her tail was really matted and they had to cut most of the fur off.  She now really looks like a poodle with a little pom-pom on the end. 

It appears we are enjoying the last few days of summer!  According to the weather outlook it is supposed to start raining on Sunday and continue all next week…  It was nice while it lasted!!!!

September 17

One more week of waiting.   The increase in oxygen has made daily activities a little more bearable.  The urinary infection seems to be gone, and one less pill to take.  Back to the pulmonary rehab routine after missing it for a week… 

Ron and Cindy paid us a visit on Saturday and it was good to see them.  Got a quick update on Lacey family happenings in Oregon.  They brought beautiful, fragrant flowers from Pike’s market, some home canned tuna (yum!) and a beautiful dish Cindy had made. 

Bob has the truck packed for the quick trip to Cove next weekend.  This trip is more about exchanging summer stuff we have accumulated and retrieving some fall and winter items.  Minimal winterizing stuff at home.  Violet will be able to play in the back yard and run.  Libby is coming to stay with Betsy for a few days of crafting, movies, etc. 

Sept 9

A bump. Actually a pretty big one. Bets started talking about it being another nose-dive, but Bob was concerned that someone would think he was tripping her.

Over the past few weeks, she has been exhausted and apparently in need of more oxygen. Unfortunately, the prescription limited that action. She had a urinary tract infection, and that also took her down a little. Made an appointment with Dr. Raghu, the lead pulmonary Prof. at UW. He was surprised at the results of the breathing and walk test by the Respiratory therapist.

April Oxy needs were 2 ltrs resting and 4 walking.  That recently moved to 3-4 resting and 6 walking. Reality found that she often needed 5 resting and 8 walking. New prescription is 5-6 resting and up to 15 when walking or moving around the rv.

Dr. Raghu also sent her immediately to the ultra sound unit to get her legs tested for blood clots, because her oxy levels often dropped below the 75% level. They are also looking at schedules for the UW heart unit for a possible heart cath since the last was done in January in Spokane. This might happen next week.

Of course Bets took all of this in stride, and Bob was in panic mode. Normal.

Lincare has been great. Called within 15 min of our arriving back at the rv and asking if we need the new stuff that night. We agreed to the next morning. Friday am they showed up with a new (and quiet) concentrator that will go up to 10 ltrs, and a new portable valve for the tanks that can get up to 15 ltrs. They are looking for a double tank cart so that when she walks, there is less chance of running out of oxygen.

What does all this mean for the immediate future? Not sure. But, Violet is sure snuggling close to Bets. We think she might sense an issue.  Life is sure full of challenges.

September 3

Well, we are all settled in our new space. It is #54 (not 94 as previously mentioned…). Violet was a bit traumatized with all the activity but seems to be adjusting fine now, although she doesn’t have her view of all the people walking their dogs right outside her door! We are a bit more isolated or private, depending on how you look at it.

Noticing trees with leaves changing color recently. Can’t believe it is September already when we just had a taste of summer. Bob is planning a trip home in a couple of weeks to take care of some things. Libby is coming to stay with me for a few days and we will be doing some crafting and movie watching. It will be a nice change for both Bob and I and Violet too as she gets to go home… I considered going but decided it wasn’t worth the risk of missing out on a lung if one became available….

We are invited to Dan and Terri’s on Monday for a BBQ and that will be nice. They have a beautiful backyard and the weather is supposed to be warm and sunny.

August 27

Another busy week has quickly passed by. Getting ready to move from space 225 to space 94 next week (September 1). It is actually just across the ‘street’ from where we are now but a little higher so we won’t have all the rainwater accumulating at our door this winter!!!

We do like our current spot but it does become a swamp and it does rain in Seattle (UNDERSTATEMENT of the year!!!!). The ground will still get really wet, but at least it will not be standing water.

The monthly RV Park pot luck is this evening and it is expected to be a big turnout. An assistant manager couple are leaving in a few weeks for New Mexico to live with her Dad who needs some help. They are well liked here and will be missed. This is their farewell ‘dinner’. Bob has accepted a ‘job’ with the park, driving the golf cart around 3 days a week to water plants! They do understand that a phone call could change everything but in the mean time it will keep him busy and feeling useful. Hope he is more consistent with their plants than he has been with mine… My poor tomato looks so pathetic although I have eaten quite a few cherry tomatoes from it and he has managed to keep my fuchsia alive! I’m not complaining cause he does laundry good….

Still living in the moment and waiting for ‘the call’…..

August 20

We are once again alone here in the RV. Cassie went home on Wednesday and poor Violet is really missing her! They had been together for a month; 2 weeks in Beaverton and 2 weeks in Bothell.

Went to Theo’s Chocolates on Monday. Hoped to schedule a tour but they were booked for the week so we just sampled their delicious variety of chocolates and of course bought a few to bring home. Cassie picked out some to take home to Mom and Dad.

Libby and Richard came to visit on Thursday. We had a great time playing Pegs & Jokers, drinking a little wine and visiting. Cooked chicken on the Traeger too. They spent the night in a motel but Bell had a ‘sleepover’ with Violet. They hadn’t seen each other for several months. We then went to the Maltby Café for another great breakfast.

Today we are just relaxing and Bob is doing a few projects on the RV. No news to speak of….

August 13

Cassie and Bob did the Space Needle tour to the Observation Deck. Great views, but the great elevator ride up rivaled some of the best amusement park rides. Grandma waited in the gift shop at the bottom….

We then ventured to what is considered in many literary circles as Seattle’s best burger at The Red Mill. Bun was much bigger than the burger. Bacon on the burger was superb. Overall it was ok, but I think Maltby Café is better. Fries were at the Burger King level and the onion rings were also tasteless. (burger would have been filling enough) This is a place we will visit again for a second chance.

Cannon update… Started building one from 2” abs… need some minor parts so will hold for a few days for testing. Using the ¾” barrel, I have sent cherry tomatoes well beyond the 150 yard mark. Most remain whole. I charged the cannon to 50 lbs and the tomato sort of disintegrated. I could try freezing them? ;-)… I will be in Cove sometime during the month of September so will have to take them home and try them out at full pressure (90 lbs+).

Cassie and Grandma had pedicures on Tuesday morning and it was very relaxing, a fun activity for us. Grandpa and Cassie had massages on Friday much to their enjoyment! We all three attended the Lung Transplant Support Group meeting on Tuesday. Weather has been good this week so lots of time for Cassie on her scooter and Gpa on the bicycle, with Violet happily going along. Violet has met a couple of new friends, one being a 3 yr old female boxer. They chased a ball and ran so hard they eventually collapsed in a bundle together at the end of play time.

August 06

I can’t believe how fast the weeks go by! We picked up Violet and Cassie on Wednesday evening in Chehalis. Cassie will be with us for a couple of weeks and it is great. We needed some granddaughter time and it’s a nice diversion from our daily routine. She rides her scooter around the park with Violet in tow (or the other way around!!!)… We have a marathon game of Skip-Bo going too and currently we are tied.

Our neighbors, Kathy and Mike, are leaving for home on Monday. It will be sad to see them go but glad Mike has recovered enough to be released. We did meet another couple a few sites down that are here from Alaska and he had a transplant about 3 or 4 years ago. In fact, they were featured in the transplant DVD that we have. He is here for something unrelated to the transplant and we aren’t sure how long they are staying.

We are considering moving to another space just because when it rains we have a big mud bog right outside our door. Violet will miss being able to sit in the doorway and watch the people and dogs go by though.

Summer in Seattle is interesting….

Bob's Cannon Project update… Shot a few balls and cans this week. Learned some things. I had cut down on the overall volume of the larger of the guns, and it showed when launching the cans. While the can it self weighs very little, I had been adding about 3oz of water to it so that it would maintain some momentum. Not enough air volume to move it as far. Most cans barely made it to the 200’ mark (300’previously). The tennis balls however, shot well beyond the 350’ mark. Attached are a couple of photos of the two project guns. The larger of the two is of 4” ABS schedule 40 and the smaller is of 3”. A 1” electric sprinkler valve is the actuator. I used a ¼ “ pipe thread valve and a pressure gauge, both tapped into the ABS.

For those of you considering duplicating this project, make sure you pressure test the stuff in a remote location first and watch out for shrapnel. My Bro (retired diver) indicated it might be safer to fill the devices with water prior to the test, to reduce shrapnel. I have not yet tried that method. Max pressure I have used so far is about 30lbs. This could be on of those moments where the phrase “hold my beer and watch this” could be most appropriate

July 31

Well, tomorrow is August and we are still waiting…. Had a few days of feeling a little down and some homesickness but think I am past that now, at least for the time being. Have to stay positive and know that we will get through this someday.   I keep at the exercise routins, but breathing is often a real challenge. 

Violet was not impressed with the water, although she seemed to be fine on the boat. Didn’t appreciate sand on her ball…. She is having a good time with Cassie and they seem to be enjoying having her there. We will meet in Chehalis on Wednesday evening and bring Violet and Cassie back. Cassie is planning to stay here in the RV with us for a week or two so that will be a nice change and a good distraction from our daily routine. It rained this morning but has since cleared up and supposed to be nice the rest of the week!!!

We love our iphones!!!! Went to a class at the Verizon store this morning and learned more about it. We now have apps and feel like we are getting up to speed with the rest of the world. Cassie will be able to show us more when she is here….

Bob has no cannon updates. Just tooooo many rv’s here right now and all seem to be in the line of fire.

I don’t know where this quote came from but I like it: “Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

July 23

Bob’s brother Jon, sister-in-law Ched, and sister Rochelle came to visit last Sunday and we had a nice visit. It had been many years since we last saw Rochelle. We also had dinner with another ‘soon to be listed’ lung transplant hopeful and her spouse this week. It is always good to compare notes and they fixed a fantastic meal!!! Enjoyed getting to know them.

Had a bunch of testing and an appointment with Dr. Raghu on Wednesday. It seems my condition hasn’t changed a great deal so that is good news. He said his job is to keep me alive until a donor lung can be found and so far so good…

Violet got a haircut on Monday and looks like a different dog!! Had the poodle hair trimmed off her face. We met Jim and Cassie in Chehalis yesterday so they could take Violet home for a few weeks. Cassie is out of school and it is a good opportunity for Violet to bond with the rest of her family. We really miss her though!! They are planning to go boating this week-end and it will be interesting to hear how Violet likes being on a boat and water!!! We have not had the opportunity to get here to a beach or creek since the weather changed.

Supposed to have a couple of warm days here and we are ready for it. There is a potluck at the yurt tonight at 6:30 so Bob has decided to do a couple of pork tenderloins on the Traeger. He and Mike went to Costco and Home Depot this morning…

No updates on the cannon project. Weather has not been conducive to construction or testing.

July 16

Just finished week 12 on the list.

Betsy got a letter to report for Jury Duty in Pendleton! Notified them that it was not possible and they were very nice about it… Second time in the last 3 years for jury duty notification…

We each got new I-Phones today and anxious to learn how to use them. The guy at the Verizon store was very helpful and we will probably attend a 45 minute class next Sunday if we have questions, which is likely. Plan to download some tunes for the hospital stay.

Scheduled doctor appointment and tests on Wednesday. If the disease has progressed then I will probably move up on the list. It is just a matter of time before a donor that is a match and the right size comes along. Could be days, weeks, months or years! Who knows…. We have heard that there is another guy awaiting transplant in the park from Alaska. No details yet on that. Mike (our neighbor) has been released by the surgeon and he and Kathy will probably be headed home to Idaho the end of this month. It will be hard to see them go but we are so happy that he has had such a good recovery. It has been amazing to watch!!!

Cannon Project::: I plan to pressure test the cannon pressure chambers this weekend. Will take a generator and the air compressor onto the woods above the camp, run the pressure up to the 100 lb mark to make sure these things will not explode like a grenade when standing next to it. I have a 100’ pressure hose to get it away from everything. Still concerned potential about damage to the half million dollar plus coaches in the park. Built a smaller compact cannon. Will test this weekend.

July 9

Another week gone by and I’m reflecting on my life and my many blessings. I feel fortunate to have a fighting chance at this disease. Unlike a friend and coworker who was diagnosed with a brain tumor and died 2 months later with no hope of a cure or treatment. She didn’t have the chance to retire and do the things she had planned. We were the same age and planned to retire about the same time. OK, so maybe I am currently tied to oxygen and things are more difficult than I would like them to be. I’m not in pain and can look forward to each day and make plans, at least in the short term.

We enjoyed a ‘quiet’ 4th here in the RV park. BBQ’d some chicken with our RV neighbors and did S’mores on the BBQ too. They didn’t allow fireworks in the park but you wouldn’t have known it for the noise! Lasted until about midnight! Violet did well with the fireworks noise. She was aware, but no panic noticed.

Our tomato plant has tiny little tomatoes on it! It was quite warm yesterday, in the 80’s, but today only in the high 60’s, low 70’s and cloudy/rainy. The weather here changes frequently.

Violet met another golden-doodle and was so excited. The woman was with an RV repair service and just happened to be across from us in the park. She says she has to find a home for this 1 year old female named Muffin. Wish we could take her but it just isn’t possible right now. She is a ‘very’ mellow dog and looks a lot like Violet except her fur is not quite as curly. Same color. So…., if you know of someone with a few hundred to spare, that wants a spayed/chipped G-D, let us know.

Bob made an offer on an 800cc Honda from another rv’r. A couple of problems… Owner didn’t want to sell and Bob’s offer was to store it for him…. ;-) Oh, well. We meet a lot of nice people in this park.

Dinner on Fri eve with Dan and Terri. Dan is 1 yr post transplant and they have connections to La Grande. Nice dinner with nice people.

This coming Sunday is the monthly RV Park breakfast with pancakes, eggs, sausage, and good company.

If the weather is nice, Bob and Mike will be back at the cannon engineering this weekend.

July 2

Just finished week 10 on the waiting list.

Enjoying a beautiful, warm day today and hoping for more to come. Went to a few stores earlier and it was a zoo out there so we will be hunkering down here for the next few days! Park is almost full this long week-end.

Enjoyed our week of visitors! It was fun and a good distraction for us.

Yesterday we went to a cemetery in Kirkland to see the traveling Vietnam Veterans Memorial Wall. Found our high school friend Art Waldorf’s name on it. The display was very nicely done and the volunteers were helpful. Heartbreaking that so many died so young and politics….

Bought some fresh corn, green beans, strawberries and melon at the local produce market. Makes it easier to eat healthy when there is fresh fruits and vegetables available and cheap. Mike smoked some small salmon and now has a brisket on the smoker. Might be a late dinner tonight.

Cannon update. No Change. Still too dangerous to fire in the rv park. Doing some experiments in water cannon technology. Time will tell. Will work on a new prototype next week when some of the weekend campers move on.

June 26

Still here waiting, but we had a lot of visitors this week so time passed quickly.

Betsy’s sister Mary Jo and Jerry came on Monday and left Thursday. We ate out quite a bit and had a good visit. Visited Flower World and ate at the Maltby Café which was fabulous! Also shopped at the Country Village just down the road from us. Jim, Marci and Cassie arrived Friday night and stayed until today (Sunday afternoon). We did steaks and corn on the Traeger and I made Jim a birthday cake (Grandma’s famous chocolate recipe). Had a great time and Violet loved it. She and Cassie played most of the time so she was exhausted last night! We again ate at the Maltby Café this morning for breakfast. There was a line but it didn’t take long to get seated (about 15 minutes). The food is definitely worth waiting for.

The sun was out until about 4 this afternoon. It is still warm but cloudy now. Expecting Libby to arrive in about an hour. She was in Portland for a concert and is driving up for a couple of days. Will be nice to see her.

Air cannon update. First can, empty, went out about 30’. Second can, third full of water, made it about 75 yards at 30 lbs of pressure. Subsequent cans hit the 100 yard mark, still at 30 lbs pressure. Fired a few mini tennis (dog toy) balls, and easy 100+ yards. We can’t take the risk of increasing the pressure here. A couple of spendy motor coaches are just beyond the 150 yard mark. I cannot afford the potential damage. Wish I could find an unused airfield…. ;-) Will work on the design a little. I still think I can get a can to the ¼ mile mark. Maybe some competition down the road.

We also missed the Northwood Owners Association Rally at Hot Lakes RV Park. Next year.

Not much more to tell. Need to get back on our diets soon and quit eating out so much!

June 19, 2011

Father’s Day, 2011, at Lake Pleasant RV Park. Pretty uneventful! “Father” did laundry first thing this morning and we did a bit of grocery shopping. It started out to be rainy but this evening it is just cloudy and they are predicting nice weather for the next 10 days. Our front yard here is a swamp…

The park had a pot luck yesterday evening and ‘we’ did beer brats on the Traeger. They were a hit and the gathering was small but nice.

A few weeks ago I used my debit card at Michael’s Craft store and consequently we lost $1,000 from our checking account due to someone using an ATM in California. My debit card never left my possession but they must have created a card somehow using my card number and pin. Anyway, I had to complete an affidavit stating this and have it notarized to send to our bank so they can investigate. Hope they catch the bastards! Stealing from a little old lady with bad lungs! How dare them…. The reason we believe it was Michael’s is that it was on the news that some debit card information had been compromised from their stores.

Mary Jo & Jerry will be here tomorrow for a few days with their motor home. It will be nice to spend some time with them and we are hoping the weather is nice.

Bob and our neighbor Mike have moved back into their childhood and are working on a beer/pop can cannon using compressed air. First firing will be tomorrow. Mike thinks we can launch a can at least 100’….. Bob is hoping for a quarter mile. Hopefully we won’t blow ourselves up.

Next weekend is the UCSAR summer camp/training session. Bob wants to go, but knows it cannot be. Next year.

June 10

Another week gone already! 7 weeks on the list…

Violet had ‘the works’ done yesterday at PetSmart; haircut, bath with skin treatment, teeth cleaning, ear cleaning and nails clipped. She looks really good (and smells better too!) Will probably take her every two months while we are here. Bob thinks they cut the hair on her ears a little short, but looks good.

I had a pedicure at Blooming Nails on Main Street in Bothell this morning. It was a very nice, relaxing place and I plan to go there again sometime. Found them on the Internet.

Bob decided to buy a mini Traeger at Costco. We really miss ours at home and the price was good. Makes for easy meals with meat and a salad or other veggies. Healthy too if you leave out the potatoes/pasta and bread.

The pancake breakfast on Sunday was nice. A good turnout and they had sausages, eggs, fruit and juice too. Fortunately the sun was out!!! Had a bit of rain Tuesday and Wednesday but now it is supposed to be dry for 5 or 6 days. We will see…..

We are doing well although I am using a bit more oxygen than I was a few weeks ago. Besides that I feel good and trying to stay in shape. Just have to turn up the oxygen a notch or two and I’m OK.

Miss everyone! Hope you are all having a good start of summer.

June 4

Some entertainment (expensive for someone) here today. A 40’ coach backed off the end of its pad and is up to the axle / frame in mud. Two tow trucks have tried. Didn’t even budge it. Will watch the events unfold this evening. (two tried again, together. Lucky coach owner. No apparent damage. Good Sam Tow Service paid for this one.

Turned out to be a beautiful day, in the 80’s, and we actually have the air conditioner running in the RV! Planted a cherry tomato plant in a pot outside and Bob/Violet have been around the park 4 times with the bicycle (4 miles).

I walked with Mike and Kathy for a bit in the shade. Mike is doing well and he showed me his scar (it is healing nicely). He had a steel plate ‘installed’ on Wednesday because his sternum wasn’t healing as it should and he seems to have made a fairly quick recovery from that.

I’m finishing up a big x-stitch project and anxious to get it done so I can start something else. The pancake breakfast that was supposed to happen (according to Bob) on Monday didn’t and it was a great disappointment…. But, they are having one tomorrow and I double checked this time to make sure of the day. I am down another 2 lbs. (for a total of 22) so feel I can splurge and have some pancakes!

Violet is in need of a bath and haircut so we will probably make that happen this coming week. Need to keep her coat short during the warm weather. I’m hoping to have a pedicure sometime and Bob would like a massage…. Have to pamper ourselves a bit during this long wait…

Jim/Marci/Cassie are at Detroit Lake this week-end, their first outing with their new ‘outfit’ (truck/camper/boat). Hope they are enjoying the nice weather and just wish we could join them. Someday!

Memorial Day Weekend

Another week has come and gone (5 weeks on the transplant list). It was fairly nice today and we are expecting two more days of sun before the rain returns….Will just be glad for some WARM weather if that ever happens here. Guess we should be careful what we wish for. Violet wishes it would snow.

Yesterday’s pulmonary rehab was a bit challenging and I’m not sure why. Took a walk around the RV park this afternoon and it went OK although it does require all the strength I have to get motivated to do it sometimes.

The RV park is hosting a pancake breakfast on Monday morning which we will probably attend since it is held in the yurt right near our RV site. They had a potluck a few week-ends ago but Libby and I were busy crafting and didn’t feel like cooking a dish to take…. There will be many more of those during the summer I’m sure.

Mike (our RV neighbor) is doing well and healing nicely. It is great to see him out and about with no oxygen and his color is good. He is now 3 ½ weeks post double lung transplant.

May 20

Didn’t blog last week… Bob and Violet took a trip home, leaving Friday and returning on Monday (750 miles RT). My friend, Libby, spent those days with me and we had a great ‘girl’ week-end; shopping, crafting, watching movies and eating. It was a nice break from our routine for all of us. Violet loved being home and RUNNING all over the yard. She is pretty confined here and has to be on a leash at all times so she misses her freedom. Bob got some necessary chores done and had dinner at Mamacita’s with Richard.

We are finally experiencing some warm sunny weather!!! Hope it will last a few days at least. Have therapy tomorrow morning and maybe do a little shopping. Violet (Bob) has training on Saturday. Seems like there is always something to do which makes the days go by fairly fast. Have hope that our wait will not be too long. I have only been on the list 4 weeks and the average wait time is 3 months… We try not to think too much about it and just live our life in the moment. Sometimes I feel like I have stepped out of one life into another with the only constant being Bob and Violet. A strange feeling…. Everyone we see and talk to on a daily basis we have only just met and nothing is familiar except for the personal items in the RV. Even the RV is new!

Bob keeps busy with various little ‘projects’ and I keep busy with knitting, x-stitch and reading. We watch movies too.

May 6:

Had my first pulmonary rehab. session today and it was quite extensive. An hour of weight exercises and then an hour of machines. They want you in the best shape possible going into surgery so I will be going 3 times a week to the NW Therapy Center. Came home today and had a nap and sure I will be sore in the morning!
Jim, Marci and Cassie are coming to visit tomorrow and will stay through Sunday. It will be great to see them and Violet needs a good romp with one of her favorite people (Cassie). Supposed to continue to rain until onday….

Bob is going to build some wooden steps for the RV next door. Mike got ‘new’ lungs on Tuesday of this week and will be coming ‘home’ in about 10 days. He will need something more substantial than the metal steps that come with the RV… Bob is planning to build some for me also. The construction work will keep him busy. Mike is doing well and learning to breath all over again. He is 44 and has cystic fibrosis and was in much worse shape than I am. We were very excited when he got the call!

Our RV is comfortable, we keep busy and the days just go by… Bob is attending Rotary meetings in Monroe. Noon club with great lunches and nice people. Atmosphere reminds him of the La Grande Sunrise Club.

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.

March 25th

Had a call from UW on Wednesday and spoke with the nurse coordinator. She congratulated me on my weight loss and said I had done everything they had requested. She thinks the transplant team will meet next Wednesday, the 30th, and decide if I need the acid reflux surgery before or after transplant. If they determine it to be after, then I will hopefully be approved to be on the list!!! I am hoping to hear from her again next Thursday or Friday. We are proceeding with our plans for the temporary move to Bothell in the hopes that it will happen in a week or two. We are hard at work getting everything ready for that move.

We have enjoyed spending time with Cassie this week. She and Violet have spent many fun hours together and Grandpa has been teaching her firearms safety and let her shoot the 22 rifle in the backyard. We will meet Jim in The Dalles tomorrow around noon to send her back home. Plan to go to Mamacita’s tonight for dinner, one of her favorite places here. They have an awesome pepper steak with pasta that we usually get. Think I will treat myself tonight!!

March 19th:

Betsy here. Had an appointment in Walla Walla yesterday and weighed in at my upper weight goal!!!! Yoohoo!!! They will fax it to the nutritionist in Seattle and it will put me one step closer to getting on the transplant list. They want me to continue to lose weight but at least I have met the requirement to be listed as far as the weight is concerned. Have lost 14 ½ lbs. in two months…

After this appointment we drove to Beaverton and spent the night, then brought our granddaughter home with us today for spring break. She wanted to spend time here, she says with us but we know it is Violet she is interested in. They have a great time together!

Next appointment is April 7 in Seattle with Dr. Raghu. We are really hoping that the transplant committee meets soon and determines that I have met all the requirements to be listed. Will keep everyone posted on that.

March 11

March 11. We are back in Beaverton and hit a hot wings place last night. Bets didn’t each much, but had heart burn all night. Bob slept like a baby. Not sure about Marci and Jim. Cassie refused to touch anything hot. ;-)

The support group session was great. Nice to see healthy transplant recipients and meet folks who are on the waiting list. Good support mechanism.

Betsy had her test, and then met with the dr. He said she has acid reflux issues and they will probably operate at some time, but not sure yet if it will be before or after transplant. She is now within a pound of her goal to get on the list. She has an appointment with her Dr. in Walla Walla at the end of next week, and she is hoping to be a few pounds below the magic number.

While up north we made a trip to visit friends (AF people) in Gig Harbor. Great dinner, excellent wine, and even better company. Dogs got along great. We promise to visit again if they let us. 

Tomorrow we go to the Portland RV show, then on Sunday am, we head home so the next update will be from Cove. While home next week, we need to really get our ducks in row and be prepared to move to Bothell within a few days of notice. That includes having someone to mow the lawn and spray weeds. Gotta keep the weeds down in prep for the “End of the world” July 14 party at the Cove Nelson’s place in 2012.

First week of March

This finds us in the Beaverton Nelson’s driveway spending time with the granddaughter and her parents and getting adjusted to where stuff goes in the new rv.

Bob got his shot and so far it is working great. Betsy is down another few pounds. Almost at her initial goal. She has adjusted to the Weight Watchers program very well.
On Thursday eve, Violets friend Bell came for a couple of sleep-overs’. Seems they are having fun (in dog terms of course).

Next Monday we move north to the Lake Pleasant RV Park in Bothell. Some education, testing, doctor appointment, and visiting with friends for a quick three days, then back to Beaverton for some more kick back time with granddaughter.  

Last week of February

Last week of February – On the snow covered road again. Friday we drive to Boardman (quick trip over and back) to meet with some folks from Hood River. They are buying the RZR. Since they are AFP’s (actually DFP’s), we know it is going to a good home. (Arctic / Desert Fox People)

We had another 6” of snow again last night so these trips should be interesting. 11 deg out right now. 

New fifth wheel is packed and ready, so on Saturday we leave for Beaverton. Roads will be icy and snow covered. Next Wednesday, Bob has an appointment with the VA for another shot in the lower back. If the shot were any lower, it could be considered a pain in the ass.

Then on Monday the 7th of Mar, we head to Bothell, WA again for a few more days in this transplant process. Tuesday will find us at a meeting with other transplant recipient, then Wednesday, Bets has a procedure to test for acid reflux. On Thursday am, we meet with that doctor for results and next steps.

We both continue to Watch our Weight, and Bets is still just above her goal to get on the transplant list. Making progress, slow but sure.

Yesterday I was quietly chastised by my brother for not keeping updates on this blog. I promise to do better. I should probably put it on my calendar and make it a Friday update.

Most of you receiving email from us will see a slight change. Beginning to move our stuff over to gmail. We will still receiving EONI mail, but sending will be via gmail. I will probably do a mass eoni email notice of this change. 

Early February

Some delay in process. The weight loss window has been modified. From 15 lbs to 25 lbs, now to 40 lbs. Back to the drawing board. Now scheduled to see a Dr? second week in March for some testing, then back to Seattle second week of Apr to the Dr Rahgu again. Then??? Until that time, it is the weight watchers program. Some of this is a bit of a challenge since all the medication prescribed has a side effect of weight gain.

RV changes. Arctic Fox 25R is gone and we now have a 29’ Arctic Fox fifth wheel. Lots of room. Still in the moving in mode, and will be for a few more weeks. Lots of modifications to make to fit our needs. Violet visited the vet and got spayed. Also got a hair cut a few days prior to that surgery.

Late January

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.

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.

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.