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.