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.