December 29, 2012

Ok….  We have once again been remiss on keeping the blog up to date.     Middle of October to end of December in one quick writing…  

Betsy took the camper to Wallowa Lake State Park at the end of Oct for a girls camp.  They had fun….

First week of November found us at Elk Camp.  Camper with the cargo trailer in tow.  This is primarily a girls elk camp, but Bob tagged along to split firewood and keep the gen sets full of fuel.  Gave him some time in the Man Cave (cargo trailer) to watch TV, in semi-heated comfort, and have a toddy or two. 

Towards the end of elk camp, we escaped to Seattle for a quick Dr. appointment at UWMC.  Betsy got an excellent report and they said not to come back until April. 

Last two days of elk camp it snowed.  We drove out on a Monday morning and did not chain up.  Slow down the hills, but we made it fine. 

The only other trip with the Camper was to a bunko party in La Grande.  While we ‘rarely’ over consume beverages, we also do not drive under the influence.  It is easy to load and unload the camper… 

Christmas in Cove with family.  Lots of relax time and great family time.  Cassie will be with us until Jan 1 when we deliver her home.  She is a very mature young lady. 

Next trip… with the camper and trailer/w tracker will probably be in April for another week in Seattle (medical testing).  The tracker will give us easy travel means in the city, and the cave will let us stretch a little.  Then maybe a trip down the Oregon Coast. 

Wishing everyone a wonderful new year!!! 

Friday, October 19

Boy, the weeks just fly by!  We have been very busy finishing up the cleaning and sorting of the shop.  The truck and camper are now parked inside although the air conditioner on top of the camper rubs on the garage door when pulling in!  We could park it in the barn but it is more convenient to have it closer to the house when we want to use it.  Also makes a nice ‘guest room’ if we need it. 

 

I have been feeling great and feel so fortunate to be alive!  In the past few weeks I have canned apples, made and canned applesauce, canned plums, Asian plum sauce and spiced plum chutney.  We have tons of plums on our plum tree and felt like trying a few new recipes and preserving some.  We also dried plums and put some sliced apples in the freezer for pies.  The next thing is to do something with the pears that our neighbor brought us. 

 

We finally had a good dose of rain several days ago so we were able to burn all the ‘trash’ that has been accumulating over the past few months.  Had a nice campfire…  Still have a pile of yard debris that needs to be torched one of these days. 

 

Had a great visit from Dan and Carlyn who were on their way back to Kansas City.  Violet is getting used to AFP’s in the field!  (Arctic Fox People). 

 

This week we had a visit from Mary and Bill from Gig Harbor.  They are on their way to Texas to spend the holidays with her daughter.  (more AFP’s!)  It is so nice to have people stop by to visit and glad we have an RV spot for them.  We sat on the patio with a fire in the red stove and enjoyed some wine with them.  It’s great to finally feel comfortable having a fire now that we have had some rain. 

 

Had a great brief visit with Adam (the leading AFP) last week...  It was good to see him again and we look forward to the 2013 Rally.   

 

Bob is spending more time in his shop cave, now that is a lot cleaner and stuff sorted out.  Working on the new cargo trailer and hoping it’s ready for elk camp in a few weeks.

 

That’s about it!  We are just loving life and enjoying our place.  The leaves are gorgeous right now and yes we are looking forward to the first snow! (maybe this week) 

Saturday, September 29, 2012

Having trouble keeping up with this blog since we have been home.  Too many things to do here!!! 

 

The Oktoberfest was fun and we hope to go back again next year.  Enjoyed the music, food and of course the beer and wine.  LOTS of people there, especially in the evening. 

 

The last week or two we have been cleaning and sorting both in the house and in the shop (loft mainly).  Had quite a few things so we had a short notice garage sale today.  Didn’t make a lot of money but at least we got rid of quite a bit of ‘stuff’ and the rest will go to charities in town on Monday.  It was just the tip of the iceberg on sorting but at least it is a start. 

 

We do have several more trips before elk camp in November.  This Thursday we are driving to Beaverton to help celebrate Marci’s 40^th birthday!  Jim has made reservations at a supper club in Portland (Tony Starlight’s) and I think about 14 people will be in the group so it should be fun. 

 

Several weeks after that “the girls” are going on a camping trip to Wallowa Lake.  Libby and I will take our RV’s and Sheri and a friend will stay at the cabins.  We will be celebrating all of our birthdays since they are within a week or two of each other.  It should be a fun time! 

 

The following week is Elk Camp!  Can’t believe how fast the time is going by!  I need to work on the menu and think about food for that week….  It will be here before we know it… 

 

Bob has been working on fixing up the new cargo trailer with shelves, tiedowns, etc.  The Tracker fits in it nicely and leaves room for other things we might want to take on an extended camping trip or other outing. 

 

We had a nice visit from Art and Connie with the Arctic Fox Group.  Hadn’t seen them for about 5 years and it was great to catch up on all the happenings. 

 

Eventually, Nelson's Travels will again become that...  our travel blog...  Have a few things to put in place first, but soon. 

 

More later…………

Friday, September 7, 2012

It’s been awhile since we blogged.  Our granddaughter, Cassie, spent the month of August with us and we had such a great time.  She is 13 (almost 14) and such a joy to be around!  She is polite, takes care of herself and doesn’t complain about anything (except maybe Grandpa and his sense of humor…).  My sister and her granddaughter came for a visit while she was here and Cassie and Carly had fun hanging out together.  

Cassie and Grandpa spent quite a few days drivin’ and shootin’ up in the woods!  Cassie learned to drive the Tracker (stick shift) and shoot a 22.  There are miles and miles of back roads for her to practice on near our house.  Gpa says she has a ‘natural eye’ for the target.  Can easily put the majority of rounds in a 24” group at 100 yards..  Not bad for a starter…

We have been busy doing projects both inside and outside.  Hoping to have the shop cleaned out before bad weather hits so we can put the truck/camper and Durango inside.  We have enough space this year between the shop and barn to have everything under cover.  Yes, we are looking forward to the change of seasons.  Can’t wait for it to rain so we can have some campfires.  It is so dry right now that we wouldn’t take a chance. 

Violet loves being home and sitting out in her yard just watching and listening to all the critters.  We have a family of deer that come through almost every evening and they are so fun to watch.  Bob is working on enclosing one area of the patio with glass since we get very cold wind from the south in the winter.  Want to be able to sit out in front of the wood stove and not be blown away!!! 

I’m doing well, although I have nausea quite often and I think it must be one of the medications that is causing it.  The doctors have not been concerned about it and my lungs are doing fine so I’m very happy about that!  Still feel so fortunate that I can breathe and do things that I wasn’t able to do before.  I am thankful every day that I was given the chance to live.  Next appointment in Seattle is November 9.

Next week-end we are going to Mt. Angel to the Oktoberfest with Jim, Marci and Cassie.  Jim made reservations so we can park our campers a few blocks from the festivities.  It will be fun!! 

After that, we are hoping to stay home until Elk Camp which is November 2.  Have plans to do major sorting and cleaning of cupboards, drawers, etc.  Time to eliminate items we don’t need and there are many!!!!  It is amazing how much ‘stuff’ we accumulate in such a short period of time. 

Hope you all enjoy the end of the summer!

Friday, July 27, 2013

We have been busy putting stuff in the camper so it is ready for the trip to Seattle next Tuesday for a doctor appointment. The cargo trailer is empty now and will be for sale soon since Bob ordered a larger one so we can put the Tracker in it if we want to. We can also just tow the Tracker behind the truck which is what we will do on the Seattle trip since we will need a way to get to the hospital and be able to park in the underground parking facility. The truck/camper certainly wouldn’t fit! Have a reservation at Lake Pleasant RV Park and look forward to seeing friends there.

Photo of the camper with the red towd, and the back of the camper with the new Fox Landing on the rear b umper. 

Jim, Marci, Cassie and their friend Sarah will be here later today for the week-end. Their first time in Cove in almost 2 years!!! I have food and drink ready for a great time… It was fun planning the meals and cooking once again.

We now have a new garage door opener on the big door of the shop and the propane stove in the shop is fixed and ready for winter. Lots of things to do here at home!!! It’s been fun though.

Friday, July 13, 2012

Today is our son’s birthday (Friday the 13th!) and it is 13 weeks since transplant… which was on a Friday the 13th!

I actually weeded a small flower bed this morning and it was difficult but felt good to do it. Bob has been busy fixing faucets, rain gutters, etc. Lots of things to do but so nice to be back here. I am really enjoying my kitchen and being able to cook since that is one of the things I really missed when I was so sick.

We finally made the decision and are trading the Arctic Fox 5th wheel for an Arctic Fox truck camper (the 1140 model). It was really a hard choice but decided this was our best option for now. We want to be able to tow the Tracker or a cargo trailer and you just can’t do that with a travel trailer or 5th wheel… Looking forward to doing some REAL camping in the wilds!

It has been hot for the past week, in the low to mid 90’s, so we tend to move indoors in the afternoons since we have air conditioning. Even the dog wants in when it gets hot….

I’ve visited with my primary care doctor in La Grande and my pulmonologist in Walla Walla and continue to get weekly blood draw at the hospital here so the folks at UW can monitor my meds. So far, so good!!!!

Friday, June 29

HOME AT LAST!!!!!  We arrived back in Cove around 7:30 Tuesday evening.  It was a long day and drive but it felt so good to see our home again…  We both slept good in our own bed.   

Since then we have been busy working on unpacking the RV and finding homes for all the stuff we accumulated in the last 14 months.  Violet loves the yard and being able to run and not be always on a leash.  We are working on her barking though.  She barks whenever someone goes by on the road and sometimes runs out to greet them.  Fortunately it doesn’t happen often!  She doesn’t go after cars, just people walking, jogging or bicycling. 

Can’t believe what incredible friends we have!  Our yard looks like a park and we have been gone 14 months!  Libby had a bottle of wine chilling for us, some snacks to go with it, signs along the highway and in the yard, and then she even brought dinner!  Oh, and potted flowers on the patio and a tomato and pepper plant!  Wayne and Rosemary also brought a nice hanging basket.  I was overwhelmed…. 

Today I went to the Mennonite (neighbors) nursery on the corner to buy a few more plants and Esther gave me a beautiful hanging basket.  She said she and Harley were going to bring one down but since we were there she wanted me to pick it out. 

We are finding we need to get used to the elevation here.  We have lived close to sea level for 14 months and now at 3400’ so we tire easily.  Definitely taking our time unloading the RV but there is no hurry!  Lots of naps. 

Thank you all for your prayers and encouragement during this journey.  I just can’t say enough about our friends, family and neighbors….  You have been wonderful.

Tuesday, June 26

The last few days have been emotional.  We had lunch with Paul and Caron at JAKs, a popular restaurant here in Seattle.  It was great to get together and we hope to visit them in Homer some day and maybe they will visit us in Cove before they head north.

Sunday we had another great meal at Dan and Terri’s and it was a nice evening.  So emotional to leave the friends we have made here in Seattle and our support system here.  It is kind of like leaving the nest….

Monday evening we took dinner to Billie and Steve’s house.  Billie has been on the transplant list for almost a year.  Violet played with Buddy and we enjoyed visiting.  Hope Billie gets new lungs soon…    

Said goodbye to our RV Park family. 

Friday, June 22

Drove to Leavenworth last Saturday and wished we had gone during the week as it was pretty crowded.  We did spend some time shopping and walking through the main area.  Violet was in the car and it was a warm day so we didn’t stay long.  I got a chance to drive and that was fun.  Bob didn’t appear to be tooooo nerrrrrrvous… 

Saturday evening we attended the monthly pot luck at the yurt and it was a full house!  I made chicken enchiladas Friday night so all we had to do was put them in the oven when we got back from our day trip and that worked well.  We sat outside even though it was a bit chilly and windy. 

Violet was groomed on Sunday morning and she looks really good.  She enjoys making her rounds of the park and greeting the other dogs along the way.

Monday I drove myself to get a pedicure!!  It was really fun to be on my own again and not feel dependent on Bob to haul me around. 

Tuesday we went to Maltby Café with John and Karen Nelson (‘cousins’ who took care of Violet while I was in the hospital, before Libby took her home).  It was fun and of course way too much food!

Dr. Raghu visit on Wednesday and he surprised us by saying we could move home anytime!!!  He wants to see me in 6 weeks and then if all is well, in 3 months.  I do have a low white cell count they are monitoring and I will need one more blood draw.  That is planned for Tuesday morning and we are hoping to be on the road home on Wednesday morning.  I can get periodic blood draws at the hospital in La Grande after that. 

We saw Paul and Caron at Dr. Raghu’s office and she is looking great after just 3 weeks!  Got her staples out and is feeling good. 

After the doctor visit, we headed to Beaverton to pick up some stuff we had stored at Jim & Marci’s house.  Had a nice visit with Marci and Cassie and spent the night there.  Jim was in China…. 

Thursday morning Bob attended a volunteer training with ‘Donate Life’ in downtown Portland.  He is still wanting to speak at various service organizations (Rotary, Lions, etc.) about organ donation.  Not sure when we will start that but it will be fun to travel around the state promoting organ donation and seeing the sights as well. 

In the near future we have lots of settling in to do at home!  Cassie is planning to spend late July and most of August with us.  She has really missed our home in Cove as much as we have. 

Thank you all for traveling this amazing journey with us.  With any luck, the next blog will be from home!!!!  And then maybe on the road for more of ‘Nelsons’ Travels’. 

Did you know that the human body donation of organs or components can save or enhance the lives of 32 separate people?   Please Donate Life. 

Friday, June 15

I’m finally enjoying planning meals, shopping and cooking!  It has been so long since I have been able to do that… 

Kathy and Mike from Post Falls came on Monday for dinner and we did some meat on the Traeger.  I made all the sides and it was really fun.  The weather was nice enough we were able to sit outside at the picnic table for the first time since Mother’s Day.  Mike had appointments at UW and said things are fine.  He doesn’t have to come back for 6 months!!! 

Tuesday was the Lung Transplant Support Group Meeting and my first one since transplant.  It was great to see everyone and to be on the recovery side of things.  Tad from Montana who was transplanted about a week after me was there too and looked really good. 

Caron went home after only being in the hospital two weeks and seems to be doing great also.  It is so wonderful to be a part of this group of people who appreciate every breath they take.  We will probably be friends for life!

Tuesday was Bob’s birthday so Kathy and Mike brought him an ice cream ‘log’ from Baskin Robbins.  It was delicious. 

Libby and Richard drove here on Tuesday to help celebrate Bob’s birthday.  We fixed dinner here in the RV and played our pegs and jokers game.  They brought Violet back and it is wonderful to have her with us again.  She is a little bummed that she didn’t get to go with them when they left though.  They kept her so busy and she had Bell to play with.

They brought their truck and loaded it up with a bunch of our stuff.  We have accumulated so much since we have been here the past 14 months that there was no way it would fit in our truck/RV and Durango.  It will take a long time to sort through it all when we get home…

Really sick Wednesday night from something I ate…  Managed to get through the night but stayed on the couch most of Thursday recovering.  Bob was not feeling great either.  Glad that is behind us…

Had therapy this morning and V went with Bob on his walk.  It is a beautiful sunny day finally!  We both got haircuts and we are getting new batteries in the truck.  It has been dead the last 4 or 5 times Bob has tried to start it. 

We might drive to Leavenworth tomorrow…  Want to try some elevation to see if it affects my breathing and I need to practice driving again.  Haven’t driven for about 18 months.  This activity is a little scary for Bob, but he will make every effort to sit quiet…..

Another potential transplant has moved into the rv park.  A 36 year old guy waiting for a heart.  Has a backpack with a pump for his artificial heart.  Another potential heart recipient will be here in a few weeks.  I think there are at least 12 units here on some form of medical need. 

Friday, June 8

Had appointments on Tuesday with Primary Care Physician (for annual check-up), and Dr, Raghu.  Both were good…
Dr. Raghu said it was time we started thinking about going home.  He wants to see me two more times which would mean 4 weeks since I see him every two weeks.  On our next visit, however, we are going to talk to him about going home the end of June so we don’t have to pay for another month’s rent here at the RV park.  If necessary we could just pay a day at a time if he insists that we stay into July…. 

Continue to go to therapy 3 times a week and doing as much as I possibly can there.  Want to take advantage of it since it won’t be available at home.  We also continue to walk around the park at least once a day, weather permitting!!!  It has been rather wet here lately and not very warm. 

Had a mammogram on Friday after therapy (ouch!!!).  Wasn’t sure how it was going to go with my incision still tender and glad it is over for another year…. 

Jack and Laurie (they bought our RZR) came from Hood River to visit us Friday evening.  We had a wonderful visit with them and I was able to enjoy cooking dinner!  They brought some pictures of their good times with the RZR and we are so glad they are enjoying it.   It was adopted by a good family. 

Looking forward to being home soon……  Bob is mentally packing all the stuff. 

Friday, June 1

Another week flew by!  Made it to week 7 post transplant and feeling good.

We did make a quick trip to Portland on Monday for a Tuesday appointment at the VA for Bob so he could get a cortisone shot in his lower back for pain.  It has been long overdue….  The trip was uneventful and we had a chance to visit with Jim, Marci and Cassie.

Jim left Tuesday morning for Hungary and Austria for business.  He will be gone about 10 days, then home a week and off to China!  He is quite the world traveler.  He likes his job though and shouldn’t have to travel again for awhile.  Marci is busy with work and school and Cassie is counting the days until school is out!  We had dinner at her favorite place on Tuesday, Olive Garden, and drove back to Bothell on Wednesday morning. 

Appointment with Dr. Rakita, the infectious disease doctor, on Thursday.  He said to finish the course of antibiotics but that I don’t need to see him again unless something comes up. 

Our friend Caron finally got new lungs on Monday night!!  We are so happy for Caron and Paul.  Went to see her before the appointment with Dr. Rakita and she looks good.  Said she might be out of ICU sometime today.

Pulmonary Rehab was great this week.  I actually look forward to going again and being able to challenge myself with the machines and exercises.  No more oxygen and gasping for every breath!!!!

We are thinking about a different RV but don’t know what it might be yet.  It is so nice to dream again!!!  Had gotten to the point pre-transplant that we didn’t think more than a day or two in the future because we didn’t know how long I had left. 

Look forward to going home in another 4 to 6 weeks if all goes well.  It is going to seem weird to be home after spending the last 15 months living here!    

Friday, May 25

6 weeks post transplant!  Drugs for stomach issues working fine and I’m feeling much better.  Had a bronchoscopy on Tuesday and the inside of my lungs look good and ahead of the game on healing! 

Good to be back at therapy and doing something to get my strength back.  They were all very excited to see me and marveled at how I could just walk right in without oxygen. 

We had a wonderful meal with Dan and Terri on Sunday.  It was good to visit and Terri is an awesome cook!  First time we have been to their house since transplant and we needed to celebrate! 

Wednesday after therapy Bob went to the Caregiver Support Group meeting at UW.  I stayed home and took a nap!  Our friend Caron from Homer, AK e-mailed first thing in the morning to say she got ‘the call’ and they were at UW.  Bob checked on them and she was scheduled for surgery about 4:30 p.m.   “Dry run” and sent home around 6:30 p.m.  Seems like the potential donor had some issues.  Lungs were not usable.  We hope she gets the real call soon. 

Thursday a trip to Costco to pick up my sunglasses that I ordered.  Besides that, a day of not doing much.  Just breathing….  What a good feeling.

Friday a visit with Dr. Raghu, x-ray, breathing test, and of course, the forever blood draw.  Breathing test showed within normal range and improving!  Yeah!!!

It is getting so much easier to do this test and I don’t dread it anymore.  Chest x-ray looked good too.  Bronchoscopy was good although they are finding something growing from the sample so we will find out about that next week when I see Dr. Rakita.  Nothing to worry about at this point.  Overall, I am doing really well after 6 weeks. 

Went to Pulmonary Rehab this afternoon and did both PT and RT for the first time post transplant.  It was good.  My oxygen saturation rate never got below about 94 which is awesome!!!!  Most of the time it is 98 and above. 

Libby says Violet loves mushroom picking and sent pictures of her with mud all over her legs!  She is having a great time and she couldn’t be in a better place.  She did spend last week-end with Jim, Marci and Cassie and I’m sure she had fun there too.  She is certainly not lacking for attention!!!!

Looking at a change in rv….  Might be a motor home… Bob’s dream is the space of a 80’, in only 25’, with the economy of a motorcycle.  Gotta dream. 

All for this week….  Might be a change in appearance of our blog soon.  Thinking of changes..

Friday, May 18

Had a great time with ‘the kids’ last week-end.  Saturday evening they grilled some flat iron steaks on the Traeger and Marci fixed a wonderful brunch on Sunday morning.  The weather was beautiful and we were able to sit outside at the picnic table for meals!

Monday the staples were removed and that was a milestone!  Feels good to have them out.  Saw an infectious disease doctor who said they found a strange bug when they cultured the fluid from the tube so I am now on an antibiotic for that.  He said it doesn’t really have anything to do with the lungs.  Having a few stomach issues (cramps and bloating) and not sure what is causing that.  Maybe all the meds???  I was supposed to get a routine broncoscopy yesterday but it was postponed until next week because I wasn’t feeling well.

Wednesday we did some shopping (gone about 4 hours!) and I was pretty wiped out when we got home!  It was fun though and wonderful to be able to walk around in stores without struggling to breath. 

The weather has been really nice although cooling down some.  We have been walking around the park every day while it lasts!  I have an appointment at Northwest Therapy on Monday so I can get back into that routine 3 days a week.  It will help build my strength which I need since my legs are still a bit shaky. 

Had stomach issues all week but Dr. Raghu prescribed a medication late Friday afternoon and it seems to be helping. 

The area that was oozing has just about dried up and the incision is healing so we are about through with the dressing of ‘wounds’!  I am also almost completely off of the pain medication and Tylenol.  Just had one yesterday…  Only hurts once in awhile and usually when I move the wrong way. 

I have even helped with some meals this week and washed some dishes!  It has been 5 weeks since transplant and the lungs are great.

Friday, May 11

4 weeks post transplant and counting!  No additional ‘bumps in the road’ so far and hoping it stays that way.  The drainage tube was removed on Monday and the troublesome area appears to be healing.  Have an appointment on Monday to remove the staples (used instead of stitches).  Still have some pain but it is lessening each day and I hope to be off the pain meds in the next week or two. 

We have been walking around the park and it is wonderful!!!  It is something I have dreamed about for a long time, to be able to walk without the aid of oxygen or a walker or anything else.  My legs are still a bit weak so the more I walk the better.  Fortunately we have had great weather lately although still a bit cold. 

Jon & Ched stopped by for a visit on Sunday and Ched brought some pancit and lumpia!  It was delicious!!!!  They were attending a Navy Diver reunion in Bremerton.

Bill and Mary came for a visit on Thursday and we had a nice lunch at the Creekside Café.  Mary brought some homemade cinnamon rolls and they are wonderful. 

Tuesday was a pedicure and Wednesday we had haircuts.  A little pampering was in order. 

Jim, Marci and Cassie will be arriving tonight for the week-end and we are looking forward to seeing them.  They are bringing their truck/camper and have a space two sites down from us. 

We miss Violet but know she is better off with Libby and Richard right now.  I have limited use of my arms for the next 5 or 6 weeks.  Not allowed to raise them above shoulder level, can’t bare any weight on them or reach behind me or lift anything heavier than 10 lbs.  Even opening the cupboard doors is difficult since they are tight fitting.  I am slowly becoming more independent but still rely heavily on ‘the caregiver’ for many things. 

Had a ‘clinic’ visit today.  It includes blood draw, chest x-ray, pulmonary function test and visit with Dr. Raghu.   He indicated I am doing well and he doesn’t need to see me for two weeks!  They are scheduling a routine broncoscopy for sometime next week.  These are usually done about a month after transplant and lets them see inside the lungs to make sure everything is as it should be.  Walking around the hospital today was challenging but good exercise for me.  It is such a big place and of course all the places we needed to be are spread out on several floors.  Dr. Raghu said I was a popular person!  He kept running into people that mentioned me….  Not sure if it was patients or staff or a bit of both! 

Caregiver note:  Car needs washing….  ;-)   I was saving that task for my better half, but paid for the wash today.  Will find another task for her.  Gotta get her back into the work mode.  

Saturday, May 5

Betsy here….

I can’t begin to describe how it feels to be able to breath without effort and without the aid of oxygen.  To just be able to move from one place to another without struggle.  I will be forever grateful to the donor and donor family for the gift of life they have given me.  It is wonderful to have a future again and I look forward to each and every day.

I was released from the hospital on Monday afternoon.  Marci was here with us to celebrate the homecoming and it was a very exciting day.  The recliner works perfectly since it is easy for me to get in and out of without pain.  Since I am not allowed to use my arms to lift myself up, it is difficult to get up and down from a flat surface such as the bed.  No twisting or raising my arms above my head either so I am somewhat limited there.  My legs are slowly gaining strength and I need to walk as much as possible to get some muscle back. I’m hoping to return to Pulmonary Rehab as soon as I’ve healed a bit more.

I did have a minor set-back this week.  We had Tuesday here in the RV to rest, then Wednesday was spent at UW for tests and a doctor visit.  There has been a spot between my breasts where I have had some continuous bleeding.  On x-ray it indicated I had a hematoma (pocket of blood) underneath the sternum and they were concerned enough to decide to put a drainage tube in.  So on Thursday I was readmitted to UW for this procedure.  They kept me overnight and I was again released late yesterday afternoon with the tube in place and a bag attached.  It isn’t draining much now but they decided to leave it in place until Monday when I have an appointment and they will remove it then.  Bob has cleaning instructions and is doing a great nursing job!!!  I am no longer on Coumadin since they felt this was contributing to the bleeding issue.  Evidently the blood clot has cleared so the Coumadin isn’t as critical as they once thought.  They may put me back on it at some point.

The pain has lessened considerably although I continue to take some pain meds periodically.  Imagine when the staples come out, the pain will lessen even more.  They probably won’t be removed for another week at least.  They used staples instead of stitches. 

So I am now 3 weeks out and it feels wonderful.  Even with the few little bumps in the road, I feel I have had a good recovery and the doctors are really pleased with how well the ‘new’ lungs are functioning.  I certainly don’t have any complaints!!!!   

We spent the morning sorting through 3 weeks of mail and paperwork from the hospital.  It feels good to get organized.  Bob is cooking a roast on the Traeger since the dietitian is pushing protein.  I am down 10 lbs. from pre-transplant although my appetite is returning so I will probably gain some of that back.  I have to monitor vitals twice a day, weigh every day and use a micro-spirometer to check breathing.  Bob has taken on the role of pharmacist and believe me it is no small undertaking.  I take about 17 pills in the morning and additional pills at dinnertime and then at bedtime.  Some of the doses vary depending on the outcome of blood drawn (the anti rejection drugs mostly). 

Well, that’s about it for now.  Time for a nap!!!!  Thank you all so much for the well wishes, prayers, encouragement and love.  We couldn’t have made it though this without the support of our family and friends. 

LIFE IS GOOD!!!!!!!!!!!!!!!  I can Breath…….

Monday, April 30, 2012

Betsy is home to the RV about 2:15p today.   Walked right in.  Breathing...    Looking great, acting even better.   Will get her to write sometime this week.

Saturday, April 28

Bets is doing great.   Walking, eating, but most important is the breathing, breathing, breathing....  So cool for her to have new (recycled) lungs.   She is learning how to breath deep, talk in more than one word breaths, dressing, stairs, etc...  Eating good and building strength is key to this recovery.  

Because of the blood clots, they are thinning her blood with heperin and they might pull that this afternoon.  Coumadin was started yesterday, and when that stabilizes, the hep will be slowly reduced, then removed.   They had talked a little about kicking her out on Sunday (tomorrow) but most likely Monday late morning. 

Bob wants her home because he has created an extensive 'honey do' list...   ;-)   Gotta get her back at the chores. 

Lung Transplants...  Betsy was #10 for 2012....  last night they transplanted #14.  Just shy of one a week.   Still lots of people waiting.   # 12 is just across the hall.  Nice guy from near Seattle area.  He and Bets have talked a little about this new lease on life.   #13 was from Montana...  We wish them all well.   Looking forward to hearing about #15, 16, 17, 33, 45, 56,......  Right now there are about 55 on the waiting list.

Tuesday, April 24

Betsy update.

Tubes are out, pain relieving some, and walking.  Much easier to walk with out all the appendages connected to her body.  Tomorrow the last two IV’s will be replaced by oral meds.   Not sure when they will kick her out of the hospital.  Still needs to learn how to get in/out of bed, chairs, toilet, steps into rv, dressing, talking and other relevant stuff.  We have been learning about some of the meds, what they look like, and what they do.   I think Thursday will be pharmacy day where they really hand all the stuff to her and from then on, she is responsible for all medications.   Initially, probably close to 45 pills per day.  Morning, noon, eve, night.   For the rest of her new life. 

Betsy was the 10^th transplant of 2012.   Two more this week. 

Organ donation.  We do not know where the lungs came from, but are grateful to the donor and donor family.  Betsy will eventually write a letter to them.  It will be their choice to open conversation with us.  We hope they do. 

Once we make our formal escape from Seattle, I plan to work with Life Center NW and get on the road to promote organ donation.  Betsy will probably be with me, but is shy about public speaking.  Organ donation, or the gift of life is important.  Sometimes one donor, can save or enhance the lives of 20+ people.  Amazing program.  We now have first hand experience. 

Saturday April 21

On Friday afternoon, they stopped her heart for a few moments and did a reboot.   It worked.  Heart rate went from 135 to a normal 73. 

Everything seems to be back on track.  Sitting in a chair eating.  Another good friend Terri, is with her this morning, son Jim and Libby’s daughter Lisa took the next shift.  Lisa will be there all night.  Bob goes back at 5am.  He is getting a much needed break and some sleep.  Housekeeping chores. 

Around 4pm, they moved her out of ICU and down the hall to a another care unit.  Took one of 4 tubes out of her chest.  Great progress.   Another tube is due out on Sunday and then the rest on Monday.   Monday is pharmacy day where they load up her suitcase with lots and lots of pills, educate us on what pill does what, and the impact of each.   Some of these meds will eventually be eliminated as her health improves. 

Thursday April 19, Speed bump # 2

ok.....  things went a little south today.   Just before noon, Code Blue....  For those non medic types, that is a heart issue.   I think 25 people stormed into the room.  She went into A-Fib.... ultra fast heart rate, due to a med issue.   She is now stableized and back into ICU.  Might be there for a couple of days until all the med issues are resolved. 

This scared the crap out me.   I was impressed with the medical staff and their response to an emergency.   I didn't realize so many professionals would respond, and that quickly.   The pain staff are in the room with her now and putting an epi back in.   They really need to control the pain so that she can move forward with rehab.   Surgeons said the xrays are good and show the lungs beginning to adhere to this strange new body.  

Thanks to all who have sent a text or email.  It may be a few days before she can read them, but I have tried to read a few for her as appropriate. 

More as I know it.   Bob

Wednesday, Apr 18

A much different person is in the room today.  Wide awake, seems to be energetic, and ready to get on with her new life.   Hit a minor speed bump yesterday with some clot issues.   Surgeons are concerned, but not in panic mode over it.  Using some blood thinners.  Everyone says she ahead of the recovery game and should be out of here early next week.   Today the will continue to get her off IV meds and to pill form. 

Libby is with her right now and they are playing beauty parlor...  hair was, clean up, girly stuff..  Bob got out of the room.   Violet goes to La Grande today for a temp stay at a different home.  Peggy arrives to assist Bob with care of his parol officer.   Friends are sure great.  

More at the end of the week.  

Sunday eve, Apr 15

Betsy walked today about 150'...  had real food, and is generally in good spirits...  Still some pain, but overall, doing well.  Very tired tonight.  Some discussion about kicking her out of ICU and to the next level down, tomorrow.  Progressing very well.  Lots of well wishers have texted, FB commented or sent email...   No phone calls yet for a while please. 

On Wed morning, Violet leaves us for a while.   Libby is taking her to La Grande for a while.  Betsy needs to recover slowly without a dog jumping on her. 

Unless something major happens, I will hold off until Friday to update again.  This has been an amazing journey, especially the past few days.   I have come to really realize how important she is to me..  it has been both physically and emotionally exhausting.   Now we move on in our lives to the next challenges.  

Saturday eve

Betsy is now breathing on her own..   When we asked how she felt to breath....  "awsome".....  Stood up for a while....   Tomorrow they plan to have her walking.

Friday afternoon, April 13, 2012

Betsy was in the operating room at 3 am.  Two lungs arrived at UW Med Center at 6 am.  Lungs were in place by 8 and the stitch up process was done by 9.  We were told this may be a 6-8 hour process…  Wow… Fast…  

She is doing ok, but not awake yet.  Libby and Jim are with her, and Bob is back at RV going to bed for a few hours, then back to the hosp for the night shift.  I’m tired, and relieved… 

April 12 , Thursday

42 years ago, Betsy and Bob got married on a Friday the 13th.....   Tomorrow is another Fri 13.
Well, we got 'the call' about 8 am, after a bunch of testing and checking, Betsy was admitted at 2pm and is in the ICU.  Two potential lungs available, so if it happens, it will be pretty cool.  

The lungs are out of the area, and the Surgeon is on site to harvest.  That will be the first step in determining if they are ok.   Once they arrive at UW, then a final assessment will be made.  Earliest surgery will be around 3am, but most likely a few hours later.  (Friday 13th) This could still be a dry run, but most folks are hopeful.

Libby is here, and Jim will be here in the morning.  Violet has been cared for, and Bob is a basket case, just not showing it.   Please wish us well.  

More as we know it, but it may be a few more days until next blog. 

April 6

Another week flew by…  Jim and Marci picked up Cassie last Sunday.  They arrived in time to get 5 Guys Burgers and Fries for lunch and stayed for a nice visit.  

Monday was a great day at therapy!  Out of the blue I seemed to do better than I had for quite a while and it felt really good.  Wednesday therapy was not as good and Friday was a bit worse but I figure every day that I can show up there and do something is a good day…. 

I am in better spirits and I’m sure that has an impact on how I cope with moving around. 

We have enjoyed more of Bill and Mary’s wonderful dishes.  One casserole can feed us for 2 or 3 meals and of course we love leftovers! 

Thursday a wheelchair was delivered from Lincare.  It is not the one they ordered but a ‘fill in’ until the new one arrives.  Bob took me for a spin around the RV and I hope to take another spin around the park this week-end since it is supposed to be in the 60’s both Saturday and Sunday!!!  It felt good to get outside without having to struggle to breathe! 

Forgot to mention last week that Libby brought a “prayer shawl” sent by our wonderful neighbors and friends.  It had a poem on a sheet of paper that everyone signed.   Our neighbors, family and friends are just amazing and I don’t know what we would do without them all. 

Hope everyone has a pleasant Easter week-end! 

March 30

Cassie arrived last Saturday and we have enjoyed a very relaxing, fun week with her.  She and Grandpa have had a marathon poker game going since the first day!  It is amazing at 13 that she is quiet, agreeable, helpful, fun and just a joy to be around!!! 
I did a terrible thing to our Violet and feel really bad about it.  Last Saturday I tried to cut a clump of matted hair from her ear and accidentally nicked her with the scissors.  She yelped but we didn’t think too much about it after that.  Well, when we took her to be groomed on Tuesday they mentioned that she had a bad looking cut on her ear and that we might want to have it checked.  On Wednesday Bob and Cassie took her to the vet and they had to put her under, clean the area and put stitches in!!!   Now she is on antibiotics, had to wear one of those cone things on her head at first so she wouldn’t scratch and has been given occasional pain pills.  Can’t believe I did such a thing and I will never go near her again with anything sharp.  I do such stupid things since I have been sick….

Libby dropped off Bell on Friday and went to visit a friend who is having a bone marrow transplant.  She came back on Sunday and Bob cooked a pork tenderloin on the Traeger since it was nice weather.  Libby fixed garlic mashed potatoes and her home canned green beans.  It was all delicious!  Monday she spent several hours cleaning our RV, mainly the kitchen area.  It was so nice and we both appreciated it very much.  She brought some meat ‘gumbo’ that Richard had made and we had that on Monday.  It too was delicious.

Sunday night just as we were preparing for bed I had a panic attack for the first time.  I was moving my legs on the couch trying to adjust the blanket and trying to get Violet to move and guess I did too much too quickly because I got really out of breath.  Sat up and felt like I couldn’t catch my breath.  The more I struggled to breathe, the more I panicked, and the more I panicked the harder it was to breathe.  It was awful!!!  Hope to never have that happen again….

Tuesday Bill and Mary came to visit and they brought some casseroles and home made cookies!  We had one casserole Tuesday night and the others are in the freezer for another day.  It was so nice and we enjoyed visiting with them and hearing about their trip south.  What great friends we have!!!! Cassie and Bob fought over the cookies..  Both won. 

March 24

Well, I have been ‘listed’ 11 months as of yesterday.  We have been living in the RV in Bothell just shy of one year and still the weeks go by with amazing speed. 

The biggest concern now is the progression of the disease and I just hope each week that I’m not worse than I was the week before.  Of course it varies day to day so it is difficult to tell sometimes.  I want to think I am still able to take care of my personal needs but sometimes even with that I need help.  I ask Bob to get out my clothes, sometimes help dry me off, hang up the towels, put clothes in the laundry, help with shoes and socks, etc.  Last Sunday on a ‘struggle scale’ of 1 to 10, taking a shower was a 10, probably the worst it has ever been.  Monday was a 9 and Wednesday was a 6 so it did improve.  Tuesday I didn’t even try!!!  Didn’t go to therapy on Monday but was able to go on Wednesday even though I didn’t do as much as I would have liked.  Feel it is an accomplishment if I am able to get there and do something!  Trying not to be hard on myself when I can’t do as much as I used to. 

Jim is bringing Cassie up on Saturday to spend a week here with us (her spring break).  We are looking forward to spending time with her.  Marci is in San Francisco at a conference and she will be back on Sunday.

Libby arrived on Friday eve, bringing some requested items from home.  She is visiting a friend who is having a bone marrow transplant at UWMC, so two birds with one stone so to speak!!!  She is probably tired of having ‘sick’ friends!!  I hope to live long enough to repay her for all she has done….  We have Belle for the weekend. 

Kathy and Mike were here on Monday for Mike’s doctor appointments.  They brought their nice golden lab, Joy, with them to meet Violet.  I’m sorry to say Violet was a bit of a bully and we will have to work on that!  It was good to see them and Mike is doing well.

The shrubs and flowers are starting to bloom here and we have had some nice sunny days if a bit on the cool side. 

Bob learned today that there is a new ‘lung transplant’ hopeful moving into the park.  Don’t know much about him yet but I’m sure he will get the scoop soon and of course we will pass that along!!! 

March 16

Can’t believe it is Friday again already!  We had a wonderful visit with Jim/Marci/Cassie last week-end and it really lifted my spirits to spend some time with them.  Jim is bringing Cassie back on the 24^th so she can spend her spring break week with us.   

Had a good therapy session on Monday and attended the Lung Transplant Group meeting on Tuesday.  It was good to check in with everyone.  I sat next to a woman who had a double lung transplant on Feb. 14^th and she looked awesome!  No oxygen, no wheelchair, just a ‘regular’ person, and she said she is feeling great too.  It was very encouraging….  Now if I could just get a lung…  We tend to hear a lot of ambulances around the RV park and some of our thoughts are rather pathetic!  While we don’t wish anyone to die, if they do we just hope they donate and maybe they can be short too??  

My sister sent some wonderful oranges from Arizona and we are enjoying them.  A bit of sunshine during the rain.  However, it was sunny today!!!   

I have a new case manager with TriCare and she recommended we get a wheelchair since it is a covered item, so Bob ordered one through Lincare that has a holder for an oxygen bottle.  We are hoping if we have our own I can get out more.  Not sure how long it takes for them to get one. 

We both got haircuts on Wednesday afternoon in between rain showers.  Hoping I have a wheelchair next time as walking even short distances has become difficult (breathing..).   

Kathy and Mike are planning to be here on Monday for Mike’s periodic check-up so we will be seeing them soon.  They are bringing their dog, Joy, with them to meet Violet!   

Seeing lots of shrubs and bulbs starting to bud and bloom here in the RV park!  While we look forward to spring/summer, we sure hope we don’t have to wait much longer here.  I want to be on the ‘other side’ of the transplant process!!! 

March 9

This week has been somewhat emotional for me.  Actually it started last week and I’m not sure what brought it on but I was struggling to do the smallest things and wondering if it is worth the fight or all for nothing.  We were planning to have lunch with Dan and Terri on Sunday but didn’t have the energy to get off the couch.  Did manage to drag myself to Blooming Nails to get a much needed pedicure although I missed therapy that same day.  Just couldn’t do both.  If I can just keep up with my personal care then I feel like I have accomplished something.

Libby and Richard came to visit on Monday and it did help my mood quite a bit.  We ordered food in and played a few games of Pegs & Jokers. 

Tuesday was a trip to UW for tests and Dr. Raghu visit.  The breathing test has become a nightmare for me and I had myself so worked up about it that I started crying during the testing.  Will try to stay calm next time and maybe my emotions won’t be so near the surface then.  Anyway, visit with Dr. Raghu was good.  He said he isn’t giving up on me and told me to keep fighting and just do whatever I can.  The new medication can take several months to have an affect so maybe there is still hope that it will help. 

Concentrator died….  Lincare replaced it in about an hour.  Good stuff.  New one is much quieter and seems to be putting out a more consistent flow.

Drug myself to the dentist this week too.  It is just up the hill from the RV park and they were really nice.  No cavities and a good cleaning.  Glad to get that done for awhile. 

We did get a prescription for a wheelchair and Bob is going to check into it.  My case manager with Tricare suggested it and said it is covered so we might as well see what is available.  There are times when it would be nice to have our own.  

Thursday was nice, so Bob did some spring cleaning / sorting.  We plan to get even with Jim/Marci and send some stuff to their garage for storage.  It is amazing how much ‘stuff’ we have gathered.  We ran out of places to put it.  Sent 3 boxes of ‘stuff’ with Lib/Richard.  

March 2

Nice time and breakfast with Norm and Molly on Sunday.  Always good to visit with folks from home!!!  Both of them are HAMS (radio) and former SAR members. 

Having a bit of trouble with Lincare since our wonderful delivery person got a promotion and he had spoiled us!!!!  They must be short handed because they aren’t coming on their scheduled days and we are getting very low on oxygen bottles which is freaking Bob out!!!!  Hoping they get things straightened out soon…

Mixed bag of weather which is typical of this time of year.  Some rain, some freezing temps., some sun, etc.  Even had a dusting of snow last Saturday morning and then again on Wed….

Ok… Bob writing now so it may be a little less eloquent.   Challenges.   It is getting more difficult for her to move around.  Needs more oxygen and it takes longer for her to recover from movement.  We stopped at Kohl’s on Wednesday and she struggled, even with the wheel chair.  The breakfast with Molly/Norm was great, but it really exhausted her.  Might be a few less travels to restaurants.  The trips are fun, but challenging.  Still, she needs to get out of the house. 

Thankful for the Pulm Rehab activities.  While that activity is declining, at least she continues and has not given up (we have had that discussion).  Tri Care said we can get her a wheel chair if the Dr. will prescribe.  We are avoiding that, or at least postponing until absolutely needed. 

Travel for Bob is getting less.  I am uncomfortable with being out of the 30 minute window to assist her.  Safeway, Fred Meyer, PetSmart, fuel, is about it (no reason for other shopping).  My mall walking exercise is only a few minutes away from her pulm rehab…  Besides… I need to check out all of the mall babes and their walkers.    ;-)

Found a local dentist.  Bob got a check up and cleaning on Thursday, Betsy next week.  Nice people.  Almost as nice as the folks back at SeaBrite in LG. 

The RV Park folks have had discussions with me about watering plants again this summer.  I honestly hope we are not here, but it will keep me busy.

February 25

Another week come and gone.  We had a wonderful visit with Wayne and Rosemary last Sunday morning, here from Cove.  They are our friends and neighbors who take care of our mail and keep an eye on our house for us.  It was great to see them and catch up on all the news from home.  We went to the Country Café for breakfast which is located in the Country Village just up the hill from us. 
Managed to make it to rehab all 3 days again this week but missed the Lung Transplant group on Tuesday.  Some days it is just not worth the struggle to get out.  Picked up my new glasses at Costco on Friday after therapy and it was so crowded!  No handicapped parking so we used one of their wheelchairs….

Bob purchased a Keurig coffee maker and we are enjoying it.  It just makes one cup at a time using those little prefilled k-cups… Verrrry quick.  Have some for tea and hot chocolate too, plus some flavored coffees. 

Woke up to a bit of snow this morning and now we are having some hail…  Sort of been a hail of a day.  It is supposed to freeze tomorrow and maybe some more snow.  Violet was excited this morning, but soon realized it was not enough to play in.  Maybe tomorrow.  Sounds like everyone is having a variety of weather going on this week-end!!!  Makes life interesting…

Violet had a trip to the beauty parlor on Thursday and looks really good.  Bob made dental appointments for us in a couple of weeks since we both need a cleaning and not able to make it home to our regular dentist. 

We are expecting Molly and Norm to visit in the morning from La Grande, assuming the weather is not too bad for them to travel here. 

That’s all for now!

February 17

Just a few days since our last post…  We didn’t attend the Lung Transplant meeting on Tuesday and I didn’t go to therapy on Wednesday.  Some days are such a struggle just to get up, shower and dress that I can’t make myself do it…  I did go to therapy today!

Bob wrote a piece about being a caregiver and I told him to post it on the blog.  Both of our lives have been turned upside down and it is important for him to get his feelings out too.  He is my hero!!!

Life of a Caregiver

I decided to write a little about my life as a caregiver, but it is more than that.   I’m also a spouse of 42 years, a father, grandfather, have a dog that needs attention, home (rv) owner, part-time mechanic for two vehicles, and, and, and….. 

My week is currently a little full, but also allows me time for my greatest addiction… the computer and the internet surfing. 

Let’s start the week with Sunday, primarily because we seldom go places on that day, and that is the day I sort her meds for the week.   Patient is currently on about 15 different prescription and supplement meds; some are taken once a day, some more.   One of them is only taken on M-W-F.    We use three pill sorters for am, noon, and pm.  The morning pills are broken up between before and after food.   A fairly simple process, but it needs to be exacting to avoid duplication (overdose) or to avoid missing an important med.   Then, the daily activity of getting the meds to the patient.   Whew….  Lots of work. 

The biggest single task for me is oxygen management.   We have a concentrator that runs on house power, and then bottles that provide for some mobility.   Early in the disease, she was on 2-4 liters per minute of oxygen, and that allowed her to use some of the smaller bottles with a portable backpack.   We even had a small concentrator that plugged into the car 12v system.   For the past 6 months, it has rapidly progressed to only the house unit, and larger bottles that when used at 10 liters, last about 40 minutes.   At 15 liters, even less time.  

She currently is using 8-9 liters resting, and 15+ for showers and dressing.   Often, she uses two cannula’s for this to get some extra oxy for a few minutes.   Moving from the concentrator location to her seat in the living room is about 10’ and this activity, even if the concentrator is not on max flow, can cause her oxygen saturation levels to quickly drop to the 70% level (needs to be in the upper 90’s).  Hence, she really needs constant attention to keep her at the correct flow level.   Turn it up, turn it down, turn it up again, exchange empty bottles for full ones, untangle the hoses, turn it up and down again, and ..... 

Lately, because of the lack of energy, she needs some assistance in dressing, especially in putting sox and shoes on.  But, she charges on, hopeful for a lung donor. 

Oh…  I forgot…  In the middle of all these events, the dog needs to go out..  and needs attention.   Then its time to fix a meal.   Of course all of that is after I go to the store for groceries, do laundry, get gas for the car, drive her to physical therapy, and then I need to take care of some of my personal needs. 

I’m a guy, and for the most part, my life has been pretty good….  What is amazing to me, is that my wife has done stuff like this all her life.  The multi-tasking to take care of me, herself, our son, a job, the house, the shopping, the laundry, and all that stuff that I took for granted. 

It’s payback time..   But, this guy is not complaining.   I’m Looking for 43 years and beyond. 

The Caregiver..   ;-)