May 2014

Happiness is accepting that -
It Is What It Is

  05/01/14- Mayo Clinic: Breathing Exercises
Breathing Exercises
ps: the monkey is our own addition to the Voldyne :))
Just noticed this and thought it was worth mentioning - 2 years ago today we were back in Jacksonville after our marathon run back from Texas awaiting our appointment on 5/2/12 to get Sheila checked and admitted to the hospital. Now 2 years later on the anniversary of our canceling our trip and deciding to just wait and see what happened she's transplanted and on the mend. :))

The picture is of her Voldyne which is a neat gizmo for helping her learn to start taking deep breaths again. There are 2 chambers one measures the strength of your inhale and the second, the big one, measures the volume of your inhale. Generally people start out with a big force and small volume and then over time you learn to do the low force large volume instead. Sheila has pretty much mastered the low force and is up to 500 on the volume. To put that in perspective, for her size, the maximum would be round 750, so 500 is really good at this point. The Dr was explaining to us yesterday that it will be a few months before she reaches her full potential. With the barrel chest/extended lungs of Emphysema your diaphragms stop working, so it takeaves a few months for everything inside to get adjusted and back to working again.

For now the healing continues. They're still working on getting the meds adjusted just right, the Arrhythmia is still an issue, but we 're hoping that they'll have that figured out shortly. Other than that she's doing great, walked 260 feet today and feeling much better. Till tomorrow keep the good thoughts coming and keep smiling :))
05/01/14 Mayo Clinic: A  Shot  From The  Past
 Mayo May 2012
This shot from the past is from May 2012, when Sheila got sick and we cut our travels short to get her back here for treatment. This picture is on the 3rd floor, where we're set to go today if there are any rooms available down there. In fact they are starting to make noises about kicking us out of here which I think says a lot about how she's doing. They may have gotten the meds lined up right for the heart issue, as go got through the day and night without any skipped beats or strange rhythms. She's be released from ICU, but we only get to move down a floor if there's a room open for her so we'll have to wait and see. Meanwhile we have the discharge plans being made. The pharmacy where all her anti-rejection and other related drugs will be coming from called yesterday to check and be sure we were ok with the rather large copay they were about to put on the credit card and let us know about the discharge medications that they're sending down. So things are moving along and we'll be out of here probably the first of next week.

I'll be heading home tomorrow afternoon to get the house ready to roll, we left in kind of a hurry when the call came. Then I'll spend the night there tomorrow and bring the coach up to Jacksonville on Sunday. We'll be staying at Pecan Park RV Resort, which is on the north side of town, and we'll continue the adventure from there. From what we know so far she'll be coming back 3 days a week for rehab and I'm sure there will still be a lot of testing and adjusting over the next few months. It's a new adventure and we're looking forward to the ride. Till tomorrow, Smiles are FREE - be sure to pass a lot of them out today :))
05/02/14 Mayo Clinic: What's missing???
What's Missing??
Ok, guess before you read on - got the answer??? If you noticed the missing nasal cannula you win the prize of the day (a smile :~)). They decided this morning to take her off the oxygen and a room opened up on the third floor so they will be moving her later today.We also got a visit from one of the transplant discharge nurses to go over some of the medicines and explain what they are, what they do, the most common side effects etc. It was a very informative meeting. Overall, while there are still a few things to get resolved, she's making progress and we seem to be getting the issues resolved one by one. They did another bronc today, they are using them to help clear out her lungs and said this afternoon that they would probably do another one on Sunday. Hopefully I'll get back in time for that as I like to be near when they are doing any procedures with her.

All things considered I think  that she's doing very well. They  are talking about  discharging her on Monday and I think home will be the best thing for both of us as this point. She'll definitely get better care in the form of more focused attention at home where she'll be the center of attention rather than just another patient. Down here, she can walk to the bathroom and I think that getting up and walking a few times during the day will help her a lot in getting her strength and endurance back. For someone with a double lung transplant 13 days ago she's doing remarkably well. I attribute that to her great attitude and her willingness to accept what is and get on getting on :)) This has been a very rewarding experience for me and I've learned a lot watching her putting herself back together. Till tomorrow- keep those good vibes coming and pass that smile shes got on.
05/03-04/14 Sheila Mayo Clinic John Satsuma>Jacksonville
River Says Goodbye
Busy weekend for both of us. I drove back down to Satsuma Saturday afternoon to get the RV ready to go and then left Sunday morning to get the coach moved up to Jacksonville so we're ready for going home. Looking at the current rash of appointments it's good we're in Jacksonville. Nothing much to report on the move other than it was moving day for the love bugs also, big mess to wash off once I got into our new space. We're in the back row, space 526 (13 lol) with the forest behind us. I'll get a picture of the new park next time I go home.

Sunday morning Sheila  did the AFib thing again. It stopped on it's own, but it's a cause for concern so I think release has been postponed, at least for a day or two while they monitor her a litle more and adjust the medications for it. They also put her on a low potassium diet. Neither of us is sure that that means as far as what she can and cannot eat so we'll have to do a little research on that or they may  give us some specifics. Other than this heart rhythm thing she's doing great. It's a slow process getting your strength back after a major surgery like this and I think it's a major adjustment for her whole system getting used to all these new drugs. She didn't get to walk yesterday. First she had the heart thing and then later in the morning had to go for a bronc. They knock you out for the bronc and then they wake you up but the wake up drug doesn't seem to override the knock out one so you end up feeling kind of tired and sleepy for several hours afterwards. Still waiting to hear on a release date - have to see what develops tomorrow. Till then - be happy :))
05/05/14 Mayo Clinic: Going  for a walk
Going for a walk
It was another great day at the Mayo. No bronc so we got to have an early breakfast - then Occupational Therapy came by and did some exercises with her and insured that she was able to get up and around by herself.At the end of the session she said they were satisfied and would not be coming back, just to keep up the good work. Physical Therapy was also by and she took Sheila out for a walk around the loop - the wing has rooms on both sides with service areas in the middle. Once around the ward is about 500'. So once with the therapist, and one and a half with me, So about a quarter mile today :) The Dr & his nurse came by and said possibly tomorrow if her heart continues to behave. So far it's been pretty steady since it's little episode last Sunday morning. But she has another bronc tomorrow afternoon at 3:30, so considering how late that is, we may wait till Wed morning to flee the scene. There's a last minute class to go over the meds and be sure we know what all of them are, the schedule, etc. Taking the right meds at the right time is a big deal now. There is a very strict schedule for the anti-rejection meds so that the amount in her system stays balanced.

Got a call from the RV park, one of the outside hoses popped and a neighbor saw it spraying and turned the water off. So around 5 I took off and got the hose replaced. Since I was there anyway I jumped in the shower and got a change of clothes. I have clothes at the hospital with me, but limited to sponge baths there, so a shower was nice.
Life is good - remember to appreciate all it's blessings. Till tomorrow - keep smiling
05/06/14 Mayo Clinic: Doing good but......
Walking the hallway
So at 1:30am the nurse came in to get Sheila's blood pressure. The AFib is back again. Lasted a couple hours and so it's back to the drawing board. The Dr came in first thing this morning and listened to her heart/lungs and talked about a new plan. ECG today, then a consult with someone from Cardiology to see if they have some ideas or suggestions that we haven't tried yet. Right now it's morning, so all this is to come yet - more once it's over. Pre-consult we'll back out for another walk :) The mask is a permanent feature for the next few months at least. Any time we're out in public we're to wear a mask - her to keep from getting sick and the same for me. If I pick something up I pass it to her, so it's masks for both of us, avoid crowds, anyone who is sick with anything, etc. Not hard for us we're not much into crowds to start with.
Cardio guys came by and their opinion is that this is just a natural after effect of the lung transplant and all her body is going through right now. They have increased the meds to keep it in check and want to wait a month and then have her wear a monitor for a couple days to see if it's still going on. So we're hoping to bust out of here soon :)) We'll have to wait and see what the Dr's say tomorrow. For today, walked over twice as far as yesterday, can get up and go to the bathroom without assistance and is just generally getting stronger all over. Don't think we're ready for a marathon yet, but she's come a very long way from being almost totally helpless  a couple of weeks ago. Another bronc, this time at the bronc lab which is where we'll go for them after she's released. We have a full schedule coming up - 49 appointments on the list and the rehab (3 times a week) isn't on the list yet. Busy days ahead. Till tomorrow remember happiness is a choice - choose well :~))
05/07/14 Mayo Clinic: A Pond On Morning Walk
Mayo Morning Walk
Another day and I think we're starting to get a little antsy, we're both starting to want to go home - it's nice here, I don't think either of us have ever seen a nicer hospital, but even nice gets old after while. As the saying goes, there really is 'no place like home'. We're hoping for a release soon, but they want to see her heart run without any irregularity's for 48 hours and it seems that it likes to wait 47 hours and then skip a few beats just to keep us all guessing. Lesson from long ago, when we stop expecting to go home we'll go home :)) I did run home for a couple hours today to tweak the home computer, take a shower and pick up a few things. It does feel good to be home, but with the honey absent it's not quite 'home'. Ah well, this too shall pass - all thing do in time.
Sheila is continuing to heal and continuing to get a little stronger every day. Her steps are starting to be more confident and she's doing a lot more on her own now. Her appetite is also coming back and she's starting to eat a lot better on the limited diet that they have her on. The drugs she's on limit the ability of her kidneys to control potassium, so she's on a limited potassium diet and the food service here has a strange way of controlling that. When we get out of here we'll have a daily limit and it'll be easier to control what we have and what things she uses to get to her daily limit. So we're still here, taking it a day at a time and enjoying the absence of the oxygen tubes & tanks :)) It's a real blessing to be able to breath without stuggling for the next breath. Learning to breath normally again is a real challenge, but one she'll master in time. Till tomorrow, be happy and keep smiling......
05/08/14 Mayo Clinic: Time To Go Home??
Feeling Better
She's looking good - feeling pretty good and we spent the morning wondering if we were going to make our escape today. Then  right on schedule her heart skipped a couple beats, actully sped up for a few beats and then settled back down. It was a very brief episode this time lasting only seconds rather than minutes, but enough to cancel the escape plan. Our discharge nurse came by and did the discharge talk anyway to prepare the way for a quick escape once we get the word, I'll have to get a picture of the bag and the huge collection of pills that it contains when I get it back again. She's holding it in her office for now.

On the Dr side, they say all is well with her, a little swellinging in her feet still and this heart thing, but everything else is looking very good. On the walking front she did one walk today just holding my arm, more to know there's something to hold on to than for real need I think. She's getting around very slowly, but on your own pretty well now. The speed will come with a little more time, but for someone who just had a double lung transplant three weeks ago everyone is impressed with her progress. Latest word on getting out is possibly over the week-end but of course no on is making any real commitments. So we'll stop trying to second guess it and just wait for the official word to come down then beat a hasty retreat and get that monitor unplugged before it can cancel the plan again :)) When you can smile in the face of adversity you've got it made and looks like Sheila's still smiling - she's passed the smile to you, go out and past it along to everyone you meet today. Till tomorrow :))
05/09/14 Mayo Clinic: Our Personal Pharmacy
Our Personal Pharmacy
As promised, here's the contents of the bag. We have 17 pills, 1daily injection and the lidocaine patches which you cut in half and tn put on each side of the incisions to help numb the pain from the incision site. This will, they say, decline a little over time, but much of it is life long. Once we're home I plan to make up a spread sheet with the names, times, etc and then use that to keep track of everything. I might even make a little program for this and then turn it into a phone app with reminders, etc. to help us (and possibly others) with tracking and staying on top of taking medicines on time. Some of these are time critical, they tell you that you have an hour one way or the other, but if you want to keep an even amount in your system every 12 hours in better than 14 then 10 then 11, etc. So we'll stick as close as we can to the schedule. We might be off a few minutes on lab days, but the rest of the time should be right on time.
The nurse who handles the drug orientation and insuring you have what you need at discharge is not here over the weekend and since I was heading home today and our orientation was done she gave it to me to take home just in case we can get home this weekend. We're not counting our chickens yet, the Dr spotted something he wanted to check further on the bronc today, so he ordered a CAT scan and she has another bronc in the morning So we'll have to wait and see what's up with that along with waiting to see if her heart behaves. She's almost finished with the 'loading' stage with the heart meds, so that should get her stabilized for the time being. Then we go on the maintenance dose to keep her level where it is A lot to learn, a lot to keep track of - but when you realize the new found freedom of not being tethered to an oxygen bottle I think it's worth it.
That's it for tonight - we're still up in the air on this latest quirk, so we'll all just have to be patient and wait until tomorrow to see whats up with it Till then - NOW is beautiful, enjoy it as much as we are :))
05/10/14 Mayo Clinic: Mayo Wildlife
Mayo Wildlife
On my morning walks I've been surprised by the amount of wildlife I see out there. The campus is 240 acres and some of it is small lakes and forest. To give you an idea of how big that is I walk around on the sidewalks and around a few of the parking areas and can do 4 miles without covering the whole campus. On my walks I see a variety of wildlife, from the egret and the geese in this picture to deer and even ferrel cats. I haven't seen any snakes but judging from the sparse number of squirells running around I'd guess that there are a few around as squirells would be a favorite snake meal. But enough on nature and the beauty of the Mayo camput and on to the main topic of the day. Sheila has a very small spot between two of the stitches where the tissue has separated. It is small enough that it is not a problem and they are just keeping an eye on it at this point to be sure it's not going to get any bigger.  They did the bronc in her room yesterday and the Dr called me over to look at the area where the problem is and it is a very small, like a pin hole. If it starts getting larger they will probably need to do something about it, but for now they don't feel it poses any threat. From Sheila's point of view it's not causing any issues. She's feeling good and we got out for 2 tours of the hallway yesterday. She's just walking with me now, is up and down several times a day and doing good at getting around the room on her own. So her strength is coming back and she's continuing to heal. She's up in the chair and reading most of the day and is ready to get home and back to some home cooking :)) I think she may even be up to fixing a few easy things the way it's going. She's really doing great & feeling good right now. Till tomorrow, enjoy your weekend and keep smiling.
05/11/14 Mayo Clinic: Portable CT Scan
Portable CT Scan
Till tomorrow - hope you all had wonderful Mother's Day :))
Well it was an 'interesting' day to say the least. The bronc was set for 8:30AM, so they gave Sheila her Prograf (the primary anti-rejection drug) but held off on the rest. The bronc tech came in a little before 8:30 and got her ready which includes a lidocaine spray in her throat (which is the main reason for not eating for 2 hours afterward as your throat is dead to the world till that wears off). So a few minutes later the Dr comes in and announces they have decided to put a stent in to that spot to insure it doesn't get worse but they can't do that on the 3rd floor so we have to move back up to ICU for the procedure and then we can come back down to the 3rd floor. So now she hasn't eaten, had anything to drink or had her bronc. So pack everything up, just in case we don't get back down to 3 and the move process takes a couple hours. 11:30 we're finally moved, I tell the nurse about the missed meds and she gets the rest of her meds. 1:30 they set up this portable CT type machine and the tech setting it up kicks me out of the rooom - I leave for a few, he leaves and I come back. Around 2 or so the Dr makes it (very busy day for him today) and I ask if I can stay in my corner (I usually just stay on the couch at the end of the room during procedures they do in the room) and he says that's fine. So they intubate (put the tube down her throat) a,  put her on the ventilator nd start the bronc. The original surgeon comes in and they confer. They agree that the hole is not getting any bigger and that it appears to be healing (closing up) on it's own. They decide that it's better not to do the stent at this point. So the big machine wasn't used other than just taking up most of the room. At 5:30pm she finally got to eat - limited potassium diet of coure, so a slice of cheddar on rye bread, a orange sherbert and a bag of pretzels. But the Dr neglected to put her get out of jail free card in the computer so we got stuck in ICU for the night - but we had a real understanding nurse, so they didn't bother her during the night :)) 
05/12/14 Mayo Clinic: Kicking Back
Kicking Back
Happiness is a choice - choose well and keep smiling :))
After spending most of the day in lock down, we finally got our release orders and moved back to minimum security (3rd floor) late afternoon. After getting Sheila moved into her new digs I headed home to get a few things that are falling behind done. I was hoping to get a little work in as well, but it was 5:30 before I started home so didn't have enough time to do much. I did get the bank statements printed out, so I can get those reconciled (usually a honey job, I'm filling in this month). Depending on how tomorrow goes I may get a chance to duck out and get some work done, just have to wait and see.

The picture was after I got back. The honey had settled in and was reading when I got back. She's feeling pretty good, but we need to do something about the eating schedule. Today her hemoglobin was low so they gave her a transfusion and it just seems to me that the reason is constantly missing meals. She can't eat for 6 hours before a bronc and then 2 hours after, then we never know when the bronc is so she ends up missing breakfast and lunch. A little more communication about when things are going to happen would help eliminate this issue. This potassium thing is also problematic as it severely limits what she can eat. The menu here is very light on vegetarian choices and on the low potassium diet they only allow her one 'dairy' a day. So if she has cereal for breakfast her 4oz of milk elimiates any cheese or anything else with dairy in it. We're working on a solution - french toast or pancakes for breakfast instead of cereal, then she can have a cheese sandwich or the stuffed green pepper later (both of which are considered 'dairy'. Today she had the vegeburger for dinner after trying for both the stuffed pepper and spagetti with alfredo sauce (the only sause allowed in the low potassium diet). Once we get her home we'll find a way around these issues, for now they are just inconvenient-she's a trooper and dealing with these little annoyances well :))
05/13/14 Mayo Clinic: Dinner
Happiness is a choice - choose well and keep smiling :))
It was a pretty good day until her bronc, the Dr did something different, didn't give her enough sleepy juice and so it was an unpleasant experience and left her with a sore throat - hence the popsicle as the lead off for dinner. They did the bronc in the outpatient clinic and the Dr said he was going to do it a little differently like they normally do it for outpatients. We're not sure if the not being all the way asleep was the 'different' or not, but whatever he did yesterday is not good way to do this on a regular basis. She ended up feeling bad, sore throat and a little down from a very negative experience. We're going to talk with whoever we see when they do rounds today. It's a team that takes care of her so we may or may not see the same Dr who did the bronc yesterday. I'm not with her when they do the broncs, they take her off to the bronc lab without me, so I ran home to get a little work done. I did get a couple things caught up - but still more to do. Our hospital stay has turned out to be longer than we originally thought it was going to be so I've fallen behind a little. But we think home is on the horizon so I'll be able to get back to work and get caught up shortly. Have to keep the wheels turning, we just got the bill for the first round of prescriptions and it's a little over $3k. The expensive one ($6k for insurance, $1800 for our share) drops off in a month or two. This first one should have put us into the donut hole - another month like this one and we should come out the other end. Fortunately her rejection drugs are fully covered. They come under part B rather than the normal drug coverage, so they are 100% covered. We haven't seen the bill for the whole visit yet, miracles don't come cheap but they're worth it :))
That's if for now - ya'all take are, and pass out some smiles for us - we'll be passing our own out soon (but you won't be able to see them - we'll the the masked smilers) lol.
05/14/14 Mayo Clinic: Happy Dance
Happy Dance
Happiness is a choice - choose well and keep smiling :))
Early update - Dr just came by, we know what the problem yesterday was - the sleep juice they use for 99% of the patients doesn't work well for Sheila. They have been using a different one for her and the Dr yesterday didn't realize he needed to use the other one. So they'll get it into the notes as a special note so everyone on the team will know.

Other news - HAPPY DANCE - GOING HOME :))) We'll have our walking papers this afternoon and be out of here & on the way home. More to follow - but that's the big news for the moment.

Crazy days - it's the 17th now and I think we're starting to settle in/down a little. You think you've thought this all out and are prepared for it, but the reality is a little bigger than the plan. We did get out Wed the 14. Got home, brought stuff in and sat down to go through the meds and get things set up - we did manage to get the pills for the day taken care of, but the 'setting up' part carried over into the next day. Sheila needed a little help getting into the car, to get in she has to use a combination of leg to push up and arms to pull up. The arms and legs were willing, but just didn't have the steam to complete the trip. She did make it up the steps into the coach, but needed to stop on the way in. She got a shower, but that pretty much finished off her energy for the day - her legs just said enough and didn't want to do anymore standing for more than a minute or so. You just don't understand how hard everything is to deal with until you're actually there. Ok, on to the 15th......
05/15/14 Mayo Clinic: Home Sweet Home
Home Sweet Home
Happiness is a choice - choose well and keep smiling :))
So the 15th dawns sunny and bright - but we start the day off with Sheila's temprature high. Instructions - yes we came home with pages of instructions on what to do if - say over 100 we should call. Getting up the first reading is 99.9 - humm, call or not, so we decide to wait and see, but since it was pretty steady at high 97's or low 98's in the hospital, you of course are concerned a little. But seems that this has become normal (not 99.9, but high first thing in the morning) then wait 15 minute to 1/2 hour and it's down in the low to mid 98's. But, its the first day home so of course every little hiccup is concerning and, not wanting to do anything we shouldn't, we're of course easily brought to a state of what should we do??? It's all new and we've been in the hospital for the past month with a Dr 30 seconds away and nurses calling the Dr for any little thing out of the ordinary. Once home the Dr is 30 minutes away and while a phone call is always possible you don't want to turn into Chicken Little. So lots of is this ok, a minor issue that'll clear itself or something we should call on. So we muddle through the day. One result is we need a better digital thermometer, the ear one is quick but not real accurate, the under the tongue one takes 2 or 3 minutes to give a reading - so I run the the drugstore and pick up a new one, reading in 8 seconds and it's accurate. So evening comes along and night meds which requires a temprature, blood pressure and heart rate. The instructions for the blood pressure medicine say under 100 for the BP and we shoul call so of course she's 93. So we call and talk to one of the nurse practioners (all of whom are GREAT by the way). So she says to hold it tonight and take the morning dose.  So we follow her instructions. Sheila's worn out a little and still having a problem eating (eating very little), but she's home, she's happy and we're starting to adjust.
05/16/14 Mayo Clinic: Mayo/Shopping Day - Honey's Ride
Sheila's Ride
Happiness is a choice - choose well and keep smiling :))
7AM ECG, 7;20 Chest XRay, 8:30 Nurse Medication Teaching Session, 10:30 Bronc - so it's a busy morning and the 10:30 bronc is misleading it's actually more like 11:30 by the time they get the initial stuff done. But we're still learning, so Sheila's up at 4:30 for a light breakfast (her full breakfast is light at this point - about 1/2 the granola she was eating and milk). Her BP is 132, not overly high and we expect it since she skipped the night time BP med. Takes us longer than usual to get going even with the smaller dose of meds (just the essentials this morning, we may not do that again with a late bronc). So by the time the bronc if over and she's ready to go it's 2:30pm. She's hungry, says she feels like Chinese, so we find a nearby chinese resturant and she eats a pretty good dinner :). I ask if she's up for the shopping and she says she is as she's taking the morning and noon pills in the car so we head off to Whole Foods. We brought the GoGo for her, we're just carrying it along all the time right now just in case, she used it at the Mayo and used it again at Whole Foods. We got the shopping done, we had to throw out all the veggies from the last shopping (it was a month ago) so we needed to stock up a little. Finally it's not around 5pm we head home both a little tired, but I think more worn out than we realized. When evening meds came along (8pm) we usually have been having some toast before she takes her pills. Having something in her stomach seems to help cut down on the nausea a little. But tonight she couldn't get the toast down. She took one of her nausea pills and got her pills down, but we also noted that her BP was relatively high - 149. We concluded that the late, off schedule meds, the bronc and then shopping was just too much for one day right now. We won't combine the bronc days with any other running around. We also got a new BP guideline (90 instead of 100) and a lower dose on her Magnesium which may help with the stomach upsets. Bed time and we're both ready :))
05/17/14 Home for the day to recuperate
Sheila's favorite pastime - reading
Make someone's day - smile & say hello :))
We finally got a little time for a breather and a little more catch-up. I got a couple of outstanding customer issues fixed. Found a problem that we had with reconcilings the reimbursed payments for last month and got this web page caught up. Finishing the 14th and doing the 15, 16, 17th  all  got done today.

We're both a little frazzled from adjusting to the new way things are. All these meds and all the changes going on for Sheila's body have both a physical and a mental/emotional impact and we're discovering that the impact is shared. Sheila's got a little issue with edema (swelling in her legs and feet) so we got a script for some complression socks yesterday. We ran out to this  medical equipment store in Jacksonville to get them for her. She did fine going, but couldn't make it up the stairs without help when we got home. Later we checked out her legs and her left leg is very weak so we're doing some exercises to start working on it a little. I'm sure the Cardio-Pulmanary sessions will also help a lot with this, but we're not waiting on them. This is also a problem getting into the car as it's her left leg she needs to step up into the car. This will fade into the past soon, but for right now a month of being in bed most of the time and only walking a little is taking it's toll. I didn't have my weights at the Mayo and I just did a set and was really struggling to get to my old rep count - so we both need to get ourselves back in shape :))

We picked up a package of frozen yogurt we consider under 200/serving of potassium as good. They didn't list potassium on the box, but they list it online at 180/bar which is in our range and the taste is definitely on the high side of delicious :))
05/18 - 24 /14 Busy Week - Breakfast in the car
Breakfast In The Car
05/22/14 - Out for a walk
Out For A Walk
Smiles are free - don't be stingy with them.

5/19 - 7:40 CANNADAY LAB (try to get in early so we can eat): 8:55 ECG DAVIS 2E: 9:00 XRAY DAVIS 2E:
12:30 MAYO REGISTRATION BRONC - for example. We actually left at 6am  so she could get the  Fasting Lab over early and eat something before the bronc. She's not supposed to eat for 6 hours before the bronc. The appt time  (for the bronc) is about an hour before the actual bronc.  Breakfast in the car is because she's not comfortable taking her mask off in the Mayo anywhere to eat so she's trying to lift her mask, shovel in a spoonful of food and then put it back on. I figured it would be easier and more comfortable to just go sit in the car where she feels a little more secure.
5/20 -8:00 MAYO 3N Infectious Disease 11:00 MAYO 2N Cardiopulmonary Rehab Evaluation report early if we can and bring all meds Dress for exercise (comfortable clothes/shoes: 1:30 MAYO 3N – Transplant Co-ordinator: 2:00 MAYO 3N – Dr
5/21 - 10:30 Cardio/Pulmanary Rehab, first of her rehab sessions. Exercises to help her get her strength back and build some muscles back up. Sessions are Mon-Wed-Fri 10:30 to noon when other appts don't interfere.
5/22 - Yaaaa! a day off (or at least one where we don't need to go to the Mayo. Busy day at home, chores, etc. and a little work.
We're doing ok, but Sheila is having trouble eating. All these meds are making her nauseous and it's been getting worse. She has started losing a little weight and as we all know she doesn't have any to loose. At her 8pm meds she spit up one of her Prograf pills which is one she really needs. So we call and the NP (nurse practitioner) tells me to do the under the tongue method. The Prograf is in the capsule so you tap the power down into one side of the capsule, open it up and pour the contents under her tongue. She has to have her Prograf that's the primary anti-rejection drug. So I do that and we end the day. On the positive side she did get out for a walk earlier in the day. It was a 12 minute walk which was a record at this point. That's the second picture to the left - the mask is standard equipment when she's outside the house.
5/23 - An early, non-fasting lab and then a bronc at 8:30. To give you an idea on the bronc time, the appt is 8:30am, they take her back around 9am and they come to get me to come back to recovery (and talk with the NP) around 11PM. They have a new plan to help her get back to eating and stop the nausea. They have taken her off some of the supplements, vitamins, magnesium, calcium, etc. and they have ordered another drug to replace the Cellcept which they feel is a major contributor to the problem. They also reduce the Cellcept for now from 1000mg twice a day to 500mg twice a day until the new drug gets here (next Tues). These rejection drugs come from the Mayo Specialty Pharmacy in Minnesota. So with the holiday Monday, that's the soonest we can get it. Today at the bronc they gave her a shot of Zofran via the IV they use during the bronc. That works exceptionally well and we have a new plan for the pill form to take it earlier. This afternoon, after the bronc, she was able to eat really well and the new plan is several small snack type meals during the day and take the pill 1/2 hour or so before we eat anything. So with all these changes we're expecting the nausea issue to get resolved in the next day or so. It'll take a day or two for the meds in her now to get out of her system, but once they're gone we're expecitng positive results and to start seeing her appetite and that scale both going up. So that's pretty much the week so far. I got out for a 1/2 hour or so and dropped the car off. Oil change and lube and a front end alignment all of which were past due. Went to a Goodyear place about 3 miles away and they ran me home while they did the work. Also found that the front differential is leaking a little so I have to get that taken care of as well, but that'll have to be another day. The next couple of weeks continue to be busy ones, so if I'm slow on the updates it's just that we're busy - I'll do a big catchup one once I get time. Till next time, remember laughter is the best medicine for whatever ails you <:~))

05/26/14 - Family Visit
Howard & Randy Visiting
What goes around comes around - the smile you pass out today will return with interest tomorrow.
Sheila's brother and his wife flew out from California this week for a visit and as you can see everyone is smiling. We haven't seen them since Las Vegas in 2011. We were headed that way for another visit in 2012 when we did the turn around in Texas and came back to Florida to get Sheila over that serious bacterial infection she had. It was really good to see them again and to catch up on how they're doing. We're booked tomorrow with the Mayo all day and a bronc in the afternoon, but they'll be back Wendsday for another visit - that's a slow day, just rehab 10:30 to noon, so we'll have the afternoon to visit. Thursday we have the gastroentrologist in the morning early and then the NP and the DR so we'll see how everything is going then. This morning Sheila had lost another 1/2 pound so we're on a new regime now, I went to the pharmacy first thing this morning and picked up some BOOST PLUS - they are drinks that are vitamin rich and 360 calories each. She's had toast & jelly for breakfast, a boost then pudding and another boost this afternoon followed by a chocolate milkshake - so at 3pm she was 43 calories from her goal for the day. The goal is a little over maintenance so if we can keep her intake to that level she should start putting some weight back on. I got a program yesterday that we are using to track her calories, it's called My Fitness Pal and I got the version for the Android phone. I also got a pill reminder program for the iPhone called Dosecast. Between the two of them I think we're getting things under control. The fitness program takes your stats and activity level and then gives you a target for weight gain. Her target for the moment is 1640 carbs to put on a pound a week but I'm hoping she can work up to a little more than that and get some of her weight back quicker. All in all it's been a busy but fruitful week and we're getting things together slowly but surely. Life is good and we're enjoying every moment as it comes along :))
05/31/14 - Rough Week but still hanging in there.
A quiet spot at the Mayo
What goes around comes around - be sure  you want tomorrow what you pass out today.
As May closes and June arrives it's been a tough week for Sheila. They have adjusted the meds some more and cut down to just one bronc a week, but the nausea is continuing and without the second bronc she's now having an issue with a nonproductive cough which seems to be upsetting her stomach even more. They have been cleaning out any gunk that built up in her lungs with the broncs and I think without the vacuuming job she's trying to cough that gunk up herself but not having any luck with it.

The boost plus and the little that she manages to eat right now is keeping her weight stable, not losing any more, but also not gaining any more and the lack of food translates to a lack of energy so she hasn't been able to exercise as much as she should. We did get in a short walk today, but then her stomach started acting up and so we had to head back home. We both feel that this is just part of the process and that we'll get through this. She just needs a little more time to adjust to everything that is going on with new lungs and all these new meds. The pill she has to relieve the nausea seems to make it worse rather than relieving it - something for us to talk with the Dr about next week. We have Mayo every day this coming week and have an appointment with the Gastro Dr on Thursday to go in and check to be sure there isn't anything in her stomach that's causing the problem. But through it all we're still hugging and smiling - this too shall pass as all things do. So keep the good vibes coming, they help us make it through. Blow the picture up - she's there back by the waterfall. It's a nice quiet place at the Mayo where we can pass some of the waiting time between appointments :))