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..   ;-)

February 13 #42...l

Today is our 42^nd wedding anniversary and who would have thought we would be spending it here under these circumstances….  Thinking of home in Cove seems like another lifetime and we are living this “Twilight Zone” existence here in Bothell.   

Tonight we will dine with Denny and Candy, friends from Oregon. 

February 10

Another week goes by…  Managed to struggle through three more therapy sessions this week and determined to keep it up as long as possible. 

Took a trip to Joann’s last Sunday for a new supply of yarn.  Ended up using their wheelchair to get across the store since it is such a long distance.  Once there I can walk around with the oxygen cart in the shopping basket and that works good. 

On Monday after therapy we went to Dave’s Drive-up in Lynnwood for a burger and milkshake as recommended by Dee at therapy.  It was really good and the price reasonable.  It is a small drive-up and walk-up place.

Wednesday after therapy we went to UW for blood work, required for the new medication.  Haven’t heard any results. 

Had an eye exam at Costco yesterday and ordered new glasses!  First time in three years and the prescription hadn’t changed dramatically but they added some magnification for up close since I’m doing so much reading, crafting, computing, etc.  Those things are what keep me sane!!! 

Getting in and out of Costco was a struggle on 15 liters but as long as I take it slow it works.  Now we need to figure out where to get our teeth cleaned since it is not possible to go home. A dental office opened up right across from the new Safeway (really close to the RV park) so we might check them out. 

Wishing everyone a Happy Valentine’s Day next Tuesday

February 3, 2012

Happy Friday everyone!  I made it to 3 therapy days this week WooHoo!!!!!  Some days I feel like the new meds are helping and other days not so much but I’ll take what I can get at this point.  After 30 days the meds will be doubled assuming the blood work comes out OK.  Can cause liver damage so they have to monitor the enzyme level.  Will let you know…..

We are enjoying some beautiful but chilly weather this week.  It is nice to have the sun out for days in a row instead of just an hour here or there.  Violet had a bath at PetSmart yesterday and looks really good.

Bob did a modification to the bathroom fan.  As in most rv’s, the power switch is on the fan and in the ceiling.  Just out of Betsy’s reach.   I ran some wire through a cabinet and installed a timer switch.  Now it is within reach of all.  3 hour project.   Hardest part was fishing the wires past all the ceiling insulation.   

Weather is nice, Bob in shorts today.... 62 deg

Not much else new here.  Just another day in paradise?  Or another week at Lake Pleasant….. 

January 27, 2012

Thrill of this week was the right heart cath on Tuesday.  The hospital was very busy and no oxygen bottles were available at the valet parking area.  Only a few wheelchairs there and in the main lobby… The set of elevators we needed to take had one working out of three so the line was long and with a wheelchair you can’t just ‘squeeze in’!  Arrived at our destination in plenty of time and discovered the heart cath lab was running behind schedule by about 2 hours so we spent the next 2 ½ hours in a room waiting. 

They did take us right in to the room since I am on oxygen and would have run out and they treated us well, checking in at least every 20 minutes or so to see if we needed anything.  I asked for something to calm my nerves and they gave me a Valium and then another one just before going in for the procedure.  It helped!!! 

The procedure itself only lasted about 15 minutes.  They put a ‘line’ of some kind into the neck (jugular vein?) and feed it through to the heart to check the pressure between the heart and the lungs.  This determines the level of pulmonary hypertension which is related to the IPF.  I do have some pulmonary hypertension (already knew that) but the doctor said it was not as bad as Dr. Raghu had feared it was and that was good news.   They did have a bit of trouble feeding the line in and had to press really hard.  It didn’t actually hurt but was uncomfortable and my neck was  sore for a few days!  Said to rest for a few days so did not go to therapy on Wednesday.  The bandage they put on the site was clear and thin, almost like skin and when I pulled it off it felt like ripping a layer of skin off.  Ouch!!!!    Bob enjoyed the last part as he got to pull the bandage….  ;-)

Enough of that!!!!  The snow is almost gone except for some shady spots here in the park.  It has been sunny but cold for the past few days.   

Went to therapy this morning and we both got haircuts afterwards.  I’m finding that I can’t do some of the lower extremity exercises with the leg weights on but am determined to keep going as long as I can.  Just have to rest quite a bit between exercises… 

I do think the new medication is helping somewhat.  Not a major change but I’ll take any help I can get!!!  The dosage will be doubled after the first month so we will see what that does.  So far there haven’t been any side affects…..

While I was having the heart cath procedure done Bob went to the cafeteria and ran into someone he used to work with at the Employment Office in Salem many years ago!!!  She was there with her husband who had a heart cath just ahead of me.  What a small world it can be sometimes.  They had a nice visit.

We are invited to Dan and Terri’s tomorrow for lunch.  Decided to do lunch instead of dinner since I’m not as tired earlier in the day… 

Broke down and ordered a satellite dish from DirecTV.  Our little RV dish works great when the weather is nice but when it is raining hard or snowing we get very little reception (and in case you didn’t know it does rain in Seattle!!!)  Also ordered a DVR so we can record programs to watch later.  Had the service at home temporarily turned off and switched here so the payment should be about the same.  I do tend to watch a lot of TV just because I can’t do much of anything else.  Can only do so much reading and need something to do while I’m working on my knitting, crocheting, embroidery, etc. or when I can’t sleep at night which is often. 

Violet and Bob are still finding mounds of snow to play with when they are out but it won’t be long before it is all gone.  She will be sad….

Can’t believe it is almost February and we have been here over 10 months!  Wondering how much longer we will have to wait……  

January 20

This has been an interesting week here in Bothell.  It started snowing on Sunday and continued through Thursday accumulating to about 7 inches.  Therapy was canceled all week and we decided it was a good idea to stay off the roads considering people in this area are not used to driving in snow!!!  So I have been in the RV for an entire week (since last Friday) and Bob only ventured out one day to buy some groceries and get a prescription.  Violet loves the snow and spent as much time as she could playing in it.  It started warming up this morning and is slowly melting away, turning to slush.  We are hoping not to experience any flooding… 

The medication prescribed by Dr. Raghu for pulmonary hypertension arrived today by UPS.  The insurance company was billed for $6,300 but we only had a $12 co-pay!!!  That is a 30 day supply….  Sure hope it helps!   This was for a half tab dosage.  If till on it after 30 days, then the dosage doubles, as does the cost. 

A heart cath has been scheduled for next Tuesday so that will be a long day at UWMC.  Can’t have anything to eat or drink after midnight the night before and the procedure isn’t until 1:00 so I will be very hungry by then!!!  The heart cath should determine the severity of the pulmonary hypertension which is part of the IPF disease. 

Bob has been cooking meals for us and doing a good job.  I try to come up with simple ideas that require little preparation.  Sure wish I could be doing the cooking myself though!!!  (Bob agrees).

Well, hope all is well out there!  We are hoping to get this show on the road so we can go home!!!!  Never dreamed we would be here this long waiting.  A year ago this month we were here for a week of testing to get on the list! 

January 13, 2012 (Friday!)

We are hoping for a call on this Friday the 13^th….  We were married on Friday the 13^th and our son was born on the 13^th so it is our ‘lucky’ number for sure. 

We had a nice dinner with Mike and Kathy from Post Falls on Monday.  They were here for Mike’s check-up and he is doing well after a double lung transplant last May. 

Tuesday was the Lung Transplant Support Group meeting at UWMC.  It is always well attended with 40+ people and new faces every month.  Only 43 transplants were done in 2011, down from 53 the previous year, due to lack of donors. 

Wednesday was another day at UWMC for tests and doctor appointment.  Confirmed what we already knew that the disease is progressing…  Dr. Raghu wants another heart cath done and he is wanting to try another drug to see if he can slow the disease process.  It is quite expensive so it has to be preauthorized through the insurance and that can take several weeks.  He says I am at the top of the list and the only thing going against me is the fact that I’m short and will need a short donor. 

Last night we woke up to the sounds of a cat fight.  A few minutes later we heard howling up in the woods sounding like coyotes.  Bob went out with a flashlight and shined it towards the sound and they stopped howling.  He talked to several people today who confirmed it was the sound of coyotes!  Amazing…. 

Bob is trying to get some pics of the otter in the lake, but otter is not cooperating…  patience. 

January 7, 2012

This is the year some folks say the world is coming to an end… I just want a new lung. 

Had a bit of a meltdown again in the last day or two but have convinced myself to concentrate on the things I can do and not on the things I can’t…  It is easy to feel sorry for myself and wish things were as they used to be but that is not the reality.  Better to face it and be happy with what I have including wonderful family and friends for love and support, a nice dog to snuggle with and a spouse who loves me and sees to my needs!  Thankful I am not in pain and can still do my hobbies which keep me busy most of the time. 

We are into the 10^th month living here at the RV park and it is amazing how fast the time has gone.  At the same time, it seems forever since we were living at home and we do miss it.  We appreciate our neighbors who are keeping an eye on the place and taking care of our mail.  Don’t know what we would do without them!

Thanks for all the phone calls, cards, e-mails, texts, etc.  It helps keep us ‘in the loop’ with life outside ourselves. 

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!