April 2014

Shrink wrapped view of The Cave
A shrink wrapped view of the cave

04/01/14 Red Bay, Al  Fresh Paint
Fresh Paint
04/01-02/14 - The picture if from the end of this period - but as you can see, the front is back unblemished and shiny as new. So let's look at the journey from Mold to here. The sanding, putty, priming and sanding got underway in earnest on the  2nd. In fact we got a lot done that day. Here's a work in progress As you can see she's a little rough. Buy by the end of the day we'd gone from that to shrink wrapped and painted. Be sure to check this picture out, it's a sight and will help you understand the 'shrink wrapped view at the top of the page. Along the way on the afternoon of the 1st, Sheila commented about talking to Trevor, the local who does dash covers and entry mats. So we gave him a call, how was located across the street from us and came over. First thing next morning we had a new entryway and a carpeted foyer :)). The foyer carpet replaces the small throw rugs we were using  and is a giant improvement. It's funny how small things can make such a big difference in  how things look and feel. By the end of the day on the 2nd we were painted. All we needed now was some drying time and then the clear coat which they applied today. That, we were warned, would be a very smelly operation - lots of fumes with the learn coat I guess - so we headed our for breakfast out (a real treat, pancakes and syrup with corn syrup & partially hydrogenated corn syrup as the first two ingredients). What the heck, may not be on our diet but it sure tasted good. From there we headed into Tupelo and hung out in Barnes & Noble for a couple hours. We had done Tupelo on Mon for shopping (when you eat mostly veggy's and fruit you have to shop often) and hung out in B&N for a couple hours that day as well. It's a great place to hang out, free wifi, treats in the cafe, and a relaxed atmosphere :))
04/03/14 - Artist At Work
Taping up the striping
04/03/14 Well the 1st - 3rd just won't fit in one box, so we'll spill it over into the next day. The picture (blow that one up for sure) is the painter putting the finishing touches on the masking for the stripping. This really amazed me, as I've mentioned before I have no real 'artistic' talent. So they have the front done in the base coat and Bruce come out with the brochure for the 2007 Allegro Bus with a picture of the bus on the front of it. From that picture they mask off the front and then set to work painting. You can see from the picture above how that turns out. Here's a shot from 2008 that shows the front - hold the CTRL button and hit the + key a few times to blow it up more, then compare that with the current shot at about the same angle. I think that's called talent - I certainly couldn't do it, but some people I guess just see the world a  different way than I do.

For tonight we're sitting tight, we're inside with a big storm passing by overhead. We'll see what time we can get out of here tomorrow, head first to Red Bay to dump and clean out the tanks and then head towards home. Storm is supposed to last until early afternoon and we'll trust Bruce to tell us when it's ok for us to take it out into the elements again. For today I spent some time this afternoon cleaning the wheels, I have a troublesome (oil leaking) tag on the drivers side. Nothing wrong the rubber seal on the fill hole just doesn't seem to really seal and it makes a mess every time we drive. Also cleaned the side and did Protect All on the bottom of the slides as I noticed they were getting pretty gunky looking. Till next time - be safe, be happy and remember - Happiness is accepting that it is what it is.
04/04/14 Troy, Al - Deer Run RV Park - Morning Walk
A Spring Time Walk
04/04/14US19>US78 (Now I22)>I65>US231>Troy, Al  250 miles
We got out out of 'The Cave' around 10am once the real rain stopped and ran over to Camp Red Bay to dump our tanks before we headed for home. It was a real easy drive across to I65. Traffic picked up on the I65 and was real heavy through Montgomery and for a ways down the US 231 outside Mongomery. We ran into an accident on the US231, but it was a minor hold up and just slowed traffic to a crawl for a mile or two. All in all it was a pretty easy day, 250 miles, a little rain along the way.

We found a real nice park in Troy, Al. As you can see from the picture, we're not opening all the slides for overnights these days. The big slide seems to be working a little harder getting in and out these days, and the back bedroom slide is easier to leave in and leave 1 of the oxygen bottles in place. For overnight it seems kind of a waste to open everything up for the couple hours that we're up and using it. Deer Run is a big park with a mobile home park on the end of it. Big as in I finally got out for my morning walk and twice around the park got took me 3 milts. As you can see from the picture to the left, it's spring. Here's another shot from the same yard. It was a delightful morning, got out early, just enough light to see the roadways, and walked up and down the hills in the park. A great day :))
04/05/14 Starke, Fl
Starke Fl KOA
04/05/14 US231>I10>US90>US100>US301>Starke, Fl. 305 miles
Another easy day. The 231 was a nice road and an easy drive. We stopped for fuel in Al before getting back into Fl, $385/gal in  Al and it's $3.99 to $4+ here in Fl. We started out, leaving Red Bay with a plan but we kept modifing it along the way. Originally we were going to take the 82 across to Tifton and then down I75 to I10. But the navigator decided that she wanted to avoid GA on the way back so we modified the plan and took off down the 231 instead. Then as we're heading across the I10 towards Jacksonville (or original goal for the day) we decided we'd skip Jacksonville, we have to go back up to it on Thursday this week anyway for a port visit, so we cut off at the 100 which will shortcut us home. We quit a little short of home as it was getting late and we were both tired. Didn't want to pull into Acosta Creek at 6pm and have to get set up that late. So we found a KOA along the way and will have an easy 56 miles to get us back to our home base. We'll stop in Palatka for some shopping, make a little detour over to Hastings to top off the tanks before we park it again and it should be an easy day.

Morning walk here was called on account of rain - I must be getting old, didn't used to let a little rain keep me in. But didn't feel like walking in a rain coat or bothering the honey to get the umbrella out of the back, so too the easy way out. Be home tomorrow and I'll get back into my routine agand get back to my latest book - The Mathematical Universe - it's been really interesting so far. Till tomorrow, be safe and enjoy :))
04/18/14 Mayo Clinic, Waiting to hear & doing what we do :)  Sheila has her book, I'm on the couch taking pictures and getting started on this update.
Patiently Waiting

Sheila reading, me on the couch computing, you'd think nothing was going on :)) Just another day in the life of the U's.

Till later ya'all be safe, be happy and remember Happiness is a choice.
Ok, I'm skipping a few little updates to get right to the big news. Around 5PM yesterday, 4/18/2014, the call camThis was the second call for us but it is just as exciting as the first one was and this one wasn't a are you ready - maybe, we'll let you know, this was a report to the hospital ASAP. Getting a little flustered or excited is not good for her breathing, so it reminded her to slow down and take it easy with me on the side lines reminding her, It Is What It Is, relax :)) Yes, I'm a pest sometimes lol

The drive up was a stormy one. At one point we hit rain that made you wonder if you just fell into a lake. Traffic slowed to around 35-40, 4 ways flashing all around us, but PTB did their job and the road stayed clear and after a few miles of the extremely heavy rain the rain went back to normal and we made good time. We got to the Mayo at 7pm,checked in at the emergency room and eventually they came and took her up to her room in ICU. There we had a parade of people coming, getting papers signed and explaining what might be happening and that we wouldn't know for sure until the surgeons got the lungs from the donor and could be sure they were ok. It was a few minutes before midnight when we finally heard that she was a go. They said they'd be back for her around 12:30AM to take her to surgery, so we curled up in her bed and just snuggled till they came. They have to clean and sterilize the room, so I got kicked out. They have a big waiting room so I spent the rest of the night there. It was a rather fitful night with a couple of hours sleeping on two chairs sort of pulled together, but it passed quickly. At 6:15am the Dr came in and told me she was ok, the lungs were in and all was well. They still had more to do in the 'finish up' area, so it would be an hour or so and then I could see her. So I got the emails off to everyone and went to the cafe downstairs at 7 for a bowl of oatmeal. I like cookies, but a couple packages of them during the night was over my quota. They seemed the least harmful of the choices in the machines.

So a new adventure begins. I'll do my best to document it as we go. We've both learned a lot the last couple of years and I think the lessons learned will help us on our new adventure. We're excited that the day has come, we're excited to have a new adventure to carry us forward and we're looking forward to seeing what comes next.
04/19/14 - Mayo Clinic ICU
Tubes & more tubes
Tubes day is what we'll call this first day as that's the best  way to describe what's going on. Sheila was up and down all day. The drugs are stabilizing her but when they lower the dose she get's unstable again. They also brought in some nitric oxide which they have her on. I'm not sure yet what it does exactly but it helped stabilizing her levels. Her left lung seems to be the problem right now, it has a lot of fluid in it and they're not quite sure why but they're working to keep it cleared out and get it working better. Part of it is just the process, they did the left lung first, then they turned her on that side and did the right side. So it's normal for the down side to get a little fluid build up, but this seems more than usual. They have her on the ventilator still and the Dr tells me (and I gather from what I overhear) that they are concerned but are still hoping that this condition will right itself. It's early in the recovery process still and the Dr did tell me that its not unusual for them to need to keep patients on the ventilator for a couple of days. She has her own nurse, and the nurses have been terrific and very  competent and are doing a great job. She's drifting in and out at this point, sort of awake at times but I think everything is a little fuzzy all the time. As you can see from the picture for the day, lots of meds pouring in constantly. I did talk with her, more to her actually since she can't talk with the ventilator tube down her throat. But she knows I'm here and she's still smiling.
"Best patient I've ever had", "She a trooper", just a few of the very positive comments from the nurses. She's so good about just letting them do what they need to do. I think she's working on it and just needs a little more time to adjust to all the new in her body. When I talked to her she gave me a smile- life's good and getting better by the minute.
04/20/14 - Mayo Cliniic ICU
Small Changes
Till tomorrow, be happy, be safe and thanks for all the emails and GOOD VIBES - they are what's bringing her back (with a little help from her iron will).
We're going to call today 'Small Steps'. Sheila is improving little by little. No major changes today, but a lot of small steps in the right direction. They have weaned her off a couple of the supporting drugs and they've reduced the amount of support the ventilator is providing. There's still a batch of tubes, those won't be going away for a few days yet, but the number has decreased a little and she's tolerating the changes. This morning's bronchoscopy in addition to checking her lungs they put some medicine in the left lung to help it heal. It was still looking fuzzy on this mornings x-ray but the Dr said things were improving over yesterday. They also put in a feeding tube and have started giving her some liquid food to get her stomach working and get her some real calories.

They have had her anesthetized  much of the day today which is good  as the ventilator is uncomfortable. She was awake this morning and I talked to her. The surgeons came in for their check and told her she was healing nicely and all was well and she gave them a double 'thumbs up' that made them smile. I talked with her a bit and could see that she's there, knows who I am and  even smiled with that twinkle in her eyes. But I could also tell that the tube was bothering her quite a bit so I was glad when they turned up the  drugs so she could just rest. The Dr is hoping that they'll be able to take out the tube tomorrow. It will be great to get the tube out so we can talk a little. I'm sure everyone wants to see a picture of Sheila and not the equipment, but you'll have to bear with me - we'll get you one as soon as she's ready. If I post one with her hair messy she'll kill me. So for now you'll just have to take my word for it, she's doing great and is on the comeback trail.
EOD UPDATE - ventilator down to 30% oxygen :))
04/21/14 A shot from the past 06/12/2012
On the ferry
It was a quiet day with Sheila sleeping most of the day. The medicine they had her on was very effective and they tell me that it also puts her in 'forget' mode so she won't remember what's gone on while she was under it.She has been recovering very well so the Dr was ready to take out the ventilator tube but he needed her to be awake for that procedure so they turned off the sleep medicine around noon. But sleeping beauty was happy sleeping and didn't want to wake up. She did wake up for a few minutes around 2:30 or 3, but then went right back to sleep. So it led to a restless night. She's still asleep this morning (it's 5am the 22nd now) but she was up off and on during the night. When she first wakes up she seems to be disoriented, from all the meds I think, and she'll start pulling on the wrist straps or try to sit up. She calms right down when I talk to her so I was up a few times during the night. The day is just getting started now and hopefully they'll be taking the tube out early this morning. She should be totally awake by the time the Dr gets here and I know she'll be feeling a lot better once that tube is out. I can't even imagine what it feels like to have a tube down your throat all the time. But progress is good and her lungs seem to be working well. Whhich leads to the picture I chose for today. This is a shot from a previous stay here in Jacksonville on a bike ride that we liked to take. We're on a ferry that runs across the river and you'll notice the hose - the plan is to do it again and get a new shot munus the hose :))
Keep the good vibes coming they are helping her through. Till tomorrow be happy and enjoy the moment.
04/22/14: Mayo Clinic - Lost in the pillow chair :))
The pillow chair
Surrounded in pillows they did get Sheila out of bed and into the chair for a little while. I'll see if I can get a picture of it next time, it's an impressive operation :))

Till nest time, be safe, be happy, be now.
It's been a good day but a hard day. They took Sheila off the sleep medication yesterday and she went most of the night without any real pain meds but by morning she was having a lot of pain. They spread your ribs to put the lungs in which not only bruises the ribs but also the spine so her side and back were bothering her a lot today. The Dr came a little after 9am and did the bronchoscopy and was real pleased with the way things looked.But they have to give her a sedative to do the bronc (we'll call it that from now on) so then she was out of it again. So he came back and hour later, she was awake again, but having some pain, so he removed the ventilator tube & the feeding tube and ordered the epidermal medication. This is a neat one and works really well. You get a light regular dose and then if it wears off too soon you have a button you can push to get another does. Meanwhile, waiting for the epidermal to arrive she was on another medicine. The problem was the medication they gave her was once an hour at the most and it only lasted about 20 minutes. So we had to go through 40 minutes of pain before the next shot was due. This went on for a few hours and then the nurse got a stronger med approved and gave her a shot of that. Meanwhile, the guy from the anesthesia department came by and her platelets were too low so they wanted to give her some platelets and do an alternative procedure rather then the epidermal. They explained it and then I said ok, Sheila was a little out of it at the time. So they came to do it and they were not able to do it the way they planned and since the transfusion had raided her platelets they decided to do the epidermal. So as evening arrives she's resting much better now and not in the severe pain she was having earlier. Hopefully this new pain management system will not make her as groggy as the pain meds they have been using. She's trying to talk now but her speech is slurred from the meds I think and so she's very hard to understand. But she's off the ventilator, the Dr was very pleased with her healing so far and so a major step forward. Each day is another step and before we know it she'll be home and all this will be behind us. Like getting old, this is not a process for the faint of heart, and Sheila is anything but 'faint of heart'.
04/23/1:Mayo Clinic - Kids will be kids :~)))
Food!!!Food at last
Liquid diet, REALLY??? Yep clear fluids for the first meal, so a popsicle was the first thing to go down, can't let it melt while lesser items are being consumed. Follow that with Vegetable broth and some Jello for desert. First meal was a success even if a little popsicle ended up in the lap lol.

Next up a walk, seven steps with a walker and a little help from physical therapy. A good accomplishment for the first time up in 4 days. Later Occupational Therapy came by and she works with Sheila on getting her arms and upper body working well again. The comment was 3 days to recover for each day in bed and that seems about right. We also had the Respiratory Therapy in. They gave us a gizmo that Sheila has to inhale with to build up her new lungs. And of course there's a retraining cycle as she learns to breath again The years of struggling for breath and learning new habits to compensate for the weak lungs now have to be reversed.

Last event for a full day was she started getting  arrhythmia, this is an irregular heart rhythm of the heart. The Dr said this was pretty normal with transplants and gave her some medicine for it. It's good we are adaptable, I can understand why some people freak out in this whole process. But it just was what it was, so we took it in stride :))
Till next time celebrate your health, it's one of you most valuable possessions. A smile is a free gift you can give to everyone! 
04/24/1:Mayo Clinic: Kicking Back
Kicking back.
A late update for yesterday. It was a busy day for both of us. I had to run down to the coach to start getting things ready, pick up mail, visit with Jay & Kathy (the owners of Acosta Creek Marina where we've been staying), start getting the RV ready to move and most important for business get the main computer back online. Appears Comcast didn't get the credit card updated so they turned us off. They didn't both to call first, just sent an email which we didn't get since we were here getting a new pair of lungs :)) Anyway, it's back up and running, emails caught up and I'm back to getting a little done when I have time

Busy day for Sheila as well. She rose early and got into the chair at the start of the day. No bronc today, so we got some milk and had our granola. We're doing what we can organic, but nothing on the dinner menu that's organic. They do have a few vegetarian choices but nothing that's organic. So we had breakfast before I left and the busy day continued for her while I was gone. She got out into the hall and walked 50 feet,  then a little later  worked with  the occupational  therapist and  started on some upper body exercises. There's a long string of visitors who stop by to check on her. The surgeon, the anesthesiologists  or one of the nurses from them, sometimes both, a variety of nurses and social worker types, etc. By the time the day was over we were both worn out and had the best night we've had so far. Minimal disturbances so we both got a good nights sleep. Today is just getting started so don't know how it'll turn out yet, will try to get today this evening.
Till then be as happy as we are :))
04/25/14:Mayo Clinic: Chocolate Chip Time
Cookie  Time
Till next time keep smiling - it is what it is no point wanting it to be anything else.
An even later update this time - sorry, busy morning. Good day yesterday. The rest of the IV's, I think they call them pic lines, came out and Sheila was down to just being access via her port. Good night, Everything was quiet and we both got a good nights sleep. She got her bronc early, we had breakfast (our Organic Granola from home and low fat milk - hard to find anything organic here so we're maintaining what we can and not sweating the rest). The things in containers are pretty good, no high fructose and that kind of stuff, but not organic.

The Occupational Therapy came in first and they took her to the bathroom to brush her teeth and discovered her dressing on on of the drainage tubes was soaked, so she stood in there while the dressing was changed. Then she sat for a few minutes and brushed her teeth then returned to the chair. The chair is where she spends most of the day right now. The Drs said she has to be in the chair to eat, don't want to take any chances on asperating anything into her new lungs and right now she can't cough strongly so something getting stuck on the way down could be a problem. That wore her out a little, so physical therapy waited until afternoon to come by. She walked 150 feet with them in the afternoon. Everyone here continues to comment on how strong she is and how helpful, and of course it's Sheila, she has a smile for everyone and a thank you for everyone who helps her. It's such a blessing to be able to witness this first hand. I'm not sure what I did to be given this privilege but am thankful to PTB for this opportunity. She's continuing to mend and will be back on her feet in a week or two.

04/26/14:Mayo Clinic: The view from our window
The view from our window.
Till next time keep smiling - remember happiness is a choice. Choose to be happy :))
The day got off to a rough start around 1AM and pretty much continued in that vein all day. Around 1 or so Sheila started with the  Arrhythmia again. Up  till now it's been short  bouts with it , but this time it didn't stop but  just kept going.  If you're interested there's a good explanation of what this is  HERE. By 2AM they had the night cardio person involved and were trying to get a EKG when the Arrhythmia was happening, but of course as soon as they'd get her all hooked up she'd go back to a smooth sinus rhythm. So cardio left and the Arrhythmia came back, so did the cardio person and this time they got the EKG for the Drs to look at. After several calls to the Dr they finally put her on some new IV meds to control it and got it stopped at least for awhile. By then it was time for the X-Ray girl to arrive and the day to start. So very light on sleep she started into what would prove a tiring day for anyone.

The day was a lot of getting up and down, a lot more than she's used to so it was very tiring. By the end of the day we got her back to bed and she had a fitful sleep. She was having a little more pain than usual and Arrhythmia was causing her to get disoriented a little. Fortunately the disorientation seems to help her with forgetting what's going on so she generally doesn't remember the unpleasant moments. Recovering from something as major as this is really a big process for her body and her mind I think. But in a few days the tubes will come out and she'll start making bigger strides forward and be running the halls. All this will be a dim memory and we'll have a whole new adventure ahead of us. Till then NOW is what it is and there's no point it trying to make it be something it isn't. This too shall pass - all things do.
04/27/14:Mayo Clinic: Morning Walk
Morning Walk
Till next time remember life is good and becomes better with each little thing you start noticing and appreciating. Mindfulness - Google it.
Around 10pm last night I crashed, worn out myself from a couple of restless nights and just everything in general. Kind of tuned out the night time activities and just slept through them I think, but I got a better nights sleep and woke up my regular time. Dr stopped in early and said they'd be back early to do her bronc so I decided to get out for my walk early and saw the fountain with the light turned on - something I hadn't seen before. The picture doesn't really capture how pretty it is.

Sheila had a fair day. They were debating trying to shock the Arrhythmia, actually when it starts it switches over to AFib (Atrial Fibrillation - more HERE) which can increase the risk of having a stroke. But for the shock to be effective she has to be in the AFib and staying there, if she goes in and out of it then it doesn't work. So they thought they might shock her this morning but she was in and out of it so he decided not to shock her. Later in the afternoon she settled down into a good sinus rhythm and stayed there for several hours. They want to put her on some serious blood thinners, which is another way of solving this, but she still has the chest tubes and can't do it until they are both out. One went out today, the right side tube is gone. Now we're just waiting for the discharge on the left side to slow down a little more and they can take that one out. They also turned off the epidural (a pain method they were using) and removed it. They can only use it for a limited time. It worked very well. So she's on other pain meds now and we'll just have to see how well that works. All in all it was a pretty good day and she continues to heal slowly but surely. The pain meds seem to help with the Arrhythmia so that's a good side effect of changing over from the epidural. We both laid down a little early this evening so hopefully there's another restful night in the offing.
04/28/14:Mayo Clinic: Feeling MUCH better
Feeling Better
To all of you out there praying and sending good vibes, keep up the good work and thank you. PTB has sent an answer <:~))
BIG NEWS FLASH :))) - Giant Kudos to Dr Keller one of the physicians on Sheila's Pulmonary Transplant team. Yesterday he came and explained how Emphysema  causes the chest to expand and the lungs to extend down into the abdomen. In this process it also pushes the heart down. Sheila has a port, it provides access and was put in when we had the home infusions. This is a port under the skin by her right collar bone and it has a plastic tube that extends down into her heart. After the transplant she has normal lungs again, they are not distended and this moves the heart back up where it normally is. In the process the tube was now too long and extended further down into her heart that it had previously. His theory was that this was irritating her heart and causing the Arrhythmia and AFib issues. So he proposed taking the port out to see if that was the problem. So they took Sheila back to surgery and removed the post. She left with AFib and feeling really down and came back with a solid sinus rhythm and smiling. Picture is after getting the port removed. She also walked again, out into the hall and set a new distance record, was able to eat again, she's been having trouble eating the past few days since this started, and is just generally feeling more like her old self. The rhythm has held overnight so it looks certain that the tube was the issue and she's back to a normal heart rhythm. That means she's got her strength back, in Arrhythmia and especially AFib the heart doesn't pump correctly so your blood flow is reduced meaningfully and it leaves you feeling weak and drained all the time. Now that she's feeling like herself again she'll be running the halls in no time. On a related recovery issue, I'll be moving the coach up to Jacksonville this Sunday. More to come on that after I it get moved.
Till tomorrow let her smile remind you of all life's blessings and be sure to offer a word of thanks for such a wonderful world!
04/28/14:Mayo Clinic: Morning Sky
Morning Sky
Till next time, be happy and live every moment to its fullest.
Looks like the world was smiling this morning - that's not retouched, that's the color the sky was as the sun came up this morning. Seems the universe is happy that the honey is back on her feet. It was a good day, her pulse held steady, her bronc was good and showed her healing well and things just went well all day. They removed her other drain hose, so all the tubes are removed now and the Dr gave her the all clear to move out of ICU and down to the transplant floor.

Arount 8PM her Arrhythmia came back and she was back in AFib - but I think the cause was obvious. This condition is normal for transplant patients and it's controlled by the heart medicine. But in her case the port tube being in the wrong place was preventing the medicine from working by causing it's own irritation. So they removed it and the medicine in her system kicked in and smooth rhythm. Then they took her off the heart medicine thinking the problem was all the port and as the medicine wore off the Arrhythmia came back. So they put her back on the heart medicine and the Arrhythmia slowed and a good sinus rhythm returned :~).So they just need to keep her on that medicine a little longer while her heart adjust to these new connections and things finish healing and all should be well.

Short walk today, but she is getting stronger and each time she gets up and moves around she gets a little stronger. So everything is going according to life's plan and we're hoping to see the pace pick up a little as the week continues.