June 2014

Happiness is accepting that -
It Is What It Is

Still working on this so it's staying at the top of the page for now.

  06/02/14- Mayo Clinic: We're Back...........
Back at the Mayo Again
  Be NOW - appreciate EVERYTHING it's all wondrous:))
So the day started like any other but the nausea seemed worse and the cough that has developed over the last couple of days was considerably worse. She wasn't coughing anything up, but the cough was continuous and she couldn't stop it. Then she started spitting up and vomiting a little. It seemed like the coughing was bring stuff up just enough to get it into her windpipe but not enough for her to spit it out. We made it to the lab and got her blood drawn, but that also was an issue. They had to stick her 3 times to get the blood. Every time they'd get the needle in the vein would blow up (as in enlarge not explode). After two tries the first girl got another tech to try and he got the blood they needed. Good news was her potassium level was good - which means that the changes in the meds have let her kidney get back to doing what it should. But we deviate from the issue. The Dr was just here and they're talking about changing her meds and possibly taking her off the Prograf (Tacrolimus) and putting her on something else, didn't say what yet. But they're looking for something that her system will tolerate better. It was hoped that taking her off Cellcept and putting her on the Imuron would solve the issue, but it hasn't so far. For now it's just trial and error to find the right combination of drugs that have minimal side effects on her system and still accomplish the desired effects for preventing rejection. We both have a lot of confidence in her team so we're sure they'll find the answer. For now the plan is to get her hydrated again, give her most of her meds via IV and give her some IV nourishment to perk her back up again. She had a bronc scheduled for tomorrow and they want to be sure that gets done to clean out her lungs and be sure everything is still on track internally. For us it's just wait and see time as they work to come up with a new long term cocktail for her. So we'll be here a few days, possibly a little longer - don't know just have to wait and see and come to grips with IT IS WHAT IT IS.
06/03/14- Mayo Clinic: Bags are packed, hoping not to go......
Bags Are Packed
  Life is good - don't ever take it for granted. Count each moment as the blessing it is and SMILE :)))
Well the day isn't over yet, but a progress report seems in order. The day seemed to go pretty good, bronc in the morning, lunch and 1/2 a sandwich (swiss on rye) disappeared and she felt ok. Then an hour or so later she was starting to feel a little nausea, but nothing like before. So along comes X-Ray to take her down for a stomach picture and when she gets back from that she's got stomach cramps but lunch is staying down. She gets back in bed and turns on her side and this time she felt the AFib happen. They had held some of her meds this morning because her blood pressure was low, then there's all the pressures from being back in the hospital, wanting to eat and not being able to and the change in the meds - changing the Prograf to cyclosporine. Put all those together and it's not surprising. So they said they were moving her back up to the 4th floor to monitor it - I packed up - then she settled down and they canceled the move but said don't unpack - let's wait and see.

A little later, we're up on the 4th floor again (back in jail) hooked up to fixed monitors so she can't get up without a nurse disconnecting her, glass doors so no privacy, etc. Here's the view of the room looking out towards the hall. The Dr was in and ordered some more heart meds to get her stabilized and so we're waiting to see if that'll work. We'll probably be up here for a day or two until they're satisfied that she's settled down again. Then maybe we can get down to the 3rd floor again. We're also waiting to see if the acupuncture Dr is going to come by this evening. He has been working with the transplant patients and has had some success with helping them to eliminate the nausea problem caused by the meds. We're real hopeful that he may be able to help her. Another wait and see..... So that's the latest, now we'll wait and see, till then It Is What It Is, we're getting closer with each event to accepting that.... More as we know more.........
06/04/14- Mayo Clinic: Bags are packed, hoping not to go......
The Faces of Pain
If life hands you a lemon make some lemonaide :))  The pic is from the side of the nurses station and I liked the faces - blow it up, lol
Well we're still on the 4th floor, but her heart rate has settled down and gone back into a nice sinus rhythm. Last night it was all over the place and started fluttering at which point she started making the 6 to 8 face and telling them it really hurt. The Dr decided that it was time to give her heart a little jolt and see if that would knock some sense into it. So they set her up, put some pads on front & back and then sent her off to dream land for a few minutes.Then they waited for the right moment (I'm not sure exactly what moment that is, it but they knew) then pushed the button and it sorta worked. She stopped fluttering but her heart rate was all over the place most of the night. It ranged from the 30's to the 180's. Then at 4AM the X-Ray girl showed up and her heart appears to have liked the radiation as it settled down and has been fine since. So this morning the Dr came in and said they're leaving us here for today to be sure things stay settled and that the Cardio guys would be back. A little later Cardio showed up, talked about what had happened and how she felt then and now, gathered up the EKG's from the night and went off to confer. They returned and said they are going to get the cardio electrician to come talk with her and evaluate her. Seems that the 'low' heart rate really concerns them and that something is getting crossed in the electrical signals. So they want the heart electrician to take a look at her and then they can all get together and decide if they need to do anything else. My opinion is that this is all related to the original problem - nausea. Can't eat means a shortage of energy, a problem with the electrolytes that govern things, etc. I think we need to get this issue resolved and then see if these other issues don't resolve on thier own once she can get back to eating a healthy amount and putting some weight back on. We all know what they say about opinions! We didn't get to see the electrician today so hopefully he'll be up tomorrow. A move back to the 3rd floor and starting to feel a little better would be a great birthday present so that's the one I'm working on :)))
06/05/14- Mayo Clinic: Happy Birthday - cake & all :))
Birthday Cake
If life hands you a cake share it. :))  We had a couple pieces and then sent it to the break room for the nurses & helpers on the floor to share
So we left off last night with me putting a request in to PTB for a move to the 3rd floor and for Sheila to feel a little better for her birthday. As evening arrives we're on the 3rd floor again, with a view suite and a door instead of a glass window so we have a little privacy :)) With that a cake magically appeared, we're not sure who sent it, maybe the hospital just does it for everyone who's here for their birthday, but it was a nice surprise. On the feeling better front it seems the nausea was a little better today. Not gone, but improved, and we'll take even a small improvement as a big step in the right direction. She has also been able to eat pretty well today and has her calories for the day up over 1200 (the magic number for breaking even for the day, with another milk shake in the wings which may or may not get consumed. Because of the med schedules today, they started her on something new, lunch was late so dinner may or may not happen she's very full at the moment. She also started coughing worse today, especially when it was time for her inhaled antibiotic which she needs for the bacteria they found in the last bronc they did. So they switched to a new routine, Pulmicort & Lidocaine, then Albuterol and finally the antibiotic. These are all give with a nebulizer, a gizmo that makes the liquid into a mist that's then inhaled into her lungs. This whole process takes about an hour to happen and then she can't eat or drink anything until an hour later because the lidocaine numbs her throat and that shuts off the process that keeps food from going down the wrong way. But numbing her throat also shuts down the cough mechanism so while this is in effect she doesn't cough at all. After the fact, it seems like she coughed a bit when it first wore off, but not she's not coughing much now. So all in all it was a great day. PTB came through with the gifts we requested, she made some headway on all fronts and as bedtime approaches we're both feeling really good about her birthday and her progress. Next event is our anniversary - that's coming up on Fri the 13th :))
06/06/14- Mayo Clinic: View At Dusk
Birthday Cake
This is a shot out our window at dusk. We had a good lightning show this evening, tried to get a pic of the lightning but it wouldn't co-operate and flash when I clicked :)) Take care & keep smiling.
It was a pretty good day overall but not a great day for eating - we did get breakfast in but then there was a bronc for 3:30 so no food until after the bronc. The main issue, at least for this morning (Sat. 6/8) is another night with some minimum sleep. Respiratory had the night meds right, but didn't get here until late, then there was another med (IV) that had to be done, etc. So before you know it it's almost midnight and as usual I'm awake early (4:30AM), so overall it's another short night. It was off and on rainy this morning, but it had quit by 5 when I went out for my walk and it was a nice morning for a walk. Sheila also had an esophagas thing - had to drink this barfy stuff and then they did X-Rays on her esophagas. Not sure what that was about, but we think it has something to do with the cough she's been having. They're still working on figuring out the cause of it so they can take care of it. Just lots of little things that need to be figured out and corrected. The other theory is that it's coming from the infection and an irritation where the new lungs attach to the old airway. But the one thing we've seen is that they do what they need to in order to get these things figured out and resolved. The nausea, the original cause of coming back into the hospital, has gotten better with the last change in meds - not gone but better - but she's also off all her normal antibiotics or getting them IV rather than in pill form, so they have to get her back on all her pills before we can go home again. We also haven't started the acupuncture treatments yet which we think will be a big help and help her in getting back on all her meds in pill form. So no big expectations yet on when we'll be doing the 'happy dance' again. Possibly sometime next week, possibly longer. For now it's just keep making progress day by day and see how it goes. We're expecting to start getting back on some of her pills next week and a lot will depend on how that goes. Probably not a much new will happen over the weekend.
06/07/14- Mayo Clinic: Sunset
This is a shot out our window at sunset.  Great end to a great day :))
It was a good day overall. Sheila got off to a good start with an english muffin, milk and a milkshake. She had breakfast lunch and dinner, another shake and a boost plus, so by the end of the day she had gone just a little over her goal. Right now we have the goal set at 1640 calories, which is what the program I'm using to keep track of her meals said she needs to be on a slow weight gain. We'll see if we can boost it up a little more once this nausea gets under control. For now we're just pleased that she was able to meet that goal.She also got a shower in which was good. It always makes you feel good to get a shower :))

The rest of the day was quiet, the weekends are generally quiet here as most of the testing stuff is either closed down or on minimal staffing so they aren't poking and prodding as much. We mostly spent the day watching the geese and the ducks paddling around in the pond out the window and reading. It was nice to have a quiet day. Kind of a respite from the hectic days of the past week. The nasuea and the cough that brought her in initially has seemed to get getter, but she's on minimal meds right now and those are IV rather than pills. They'll be starting to get her back on pills in the next day or two and we'll have to see how things go then. We're also hoping to see the acupuncture doctor in the next day or two. We'd like to get that going before they start transitioning back to pills if possible. That really does sound like the most promising option. Here's a little info on it via YouTube if you're interested. This is about the Dr Sheila will be  seeing here at the Mayo. That's it for now - till tomorrow, Be Happy and pass out a few smiles alsog the way.
06/08/14- Mayo Clinic: "Back in the day" :))
This is a shot is from 1988. Where we've been - where we're going.
Make the world a better place - Meditate.
Well we started off with a good day, feeling a little nauseous but she had a good breakfast. Then the Dr came by and said they were going to start her back on her pills today. The first few pills went ok, but then she got to this potassium pill they wanted her to take and that one didn't work well. So she lost breakfast and the earlier pills she'd taken. So they switched back to the IV for everything but they didn't redo the earlier pills (first batch was about 15 minutes before the second batch so they don't know what of it is already in her system). Next the nurse gave her another medication for nausea and her system didn't seem to like that one at all. First she felt chilled and then it moved to more of a feeling terrible along with uncontrollable shaking. Pretty much just miserable for about an hour until that passed. We got the nurse practitioner back when that happened, but she didn't want to give her anything else and further complicate the situation, so she just had to tough that one out. As it was beginning to fade she did get a zanex (a pill to calm her nerves) and that helped a little. It did pass and on the plus side, after it passed the nausea was completely gone and she ate better than she has since the surgery. So she was able to have a good lunch. By dinner though it had worn off and so she was only able to pick a little at dinner - overall for the day we got about 1100 calories, so enough to break even for the day. The acupuncture Dr came by early and said he'd be back later. We'd given up on him by 7, but he did come back late and so she got that treatment. He said it would take a couple days to really take effect so we're hopeful that the nausea will fade in a day or two. Just have to see how it goes. She's got another bronc in the morning tomorrow and I'll be going home to get laundry and some chores done. Hopefully it'll be a quite Monday. o
06/09/14- Mayo Clinic: Another shot from the past
Starting the journey 1988
The inscription on the cake - "Follow the yellow brick road" pretty well defines the past 26 years - and that road still stretches out ahead of us :))
Nothing new today. The nausea is still there so it was just another day of the same. She had a bronc today so nothing to eat until afternoon, so another light day on the calories. I had to go home while she was out for the bronc and got some laundry done and brought her back some clean clothes. She wears that hospital gown for the top but likes having her own pants for the bottom - the gown isn't very good at covering your backside.

So rather than talk about nausea and related realities today I thought it might be more interesting to talk about something a little more fun. The picture for the day is from 6/6/1988, Sheila's last day at the phone company and a few days before we left for Bullhead City to tie the knot which we did on the following Friday the 13th. As another Friday the 13th approaches my thoughts can't help but go back there and all the good & bad times that have followed come flooding in. Right now we're a little down but we've been up and we've been down over the past 26 years and the one thing we've learned is that the up's seem to win in the long run and the downs quickly fade into the shadows as the good times return. We live is a world of duality so we have to accept that without the downs there could not be any ups. Without a frown you would not have a smile, without an occassional tear you'd never know laughter. Everyone tends to feel bad for someone when they're a little down, but we need to remember that without down there would not be an up, so it's all just part of the process. Before you know it the sun will be out again and we'll all be running down the beach (yes she'll be able to run now) and the days of dragging an oxygen tank along will fade into a dim memory. There's a thought to make one smile - now go out and pass that smile along. Life is good :)))
06/10/14- Mayo Clinic: Ben & Jerry's 389 Caloriees
Ben & Jerry's
Ben & Jerry's went down, stayed down and helped get her calories for the day up where they needed to be. When all else fails Ice Cream to the rescue. Have a scoop & pass the smile it gives you on!
Well it was an eventful day which hopefully will be the day we mark as turning things around. The day did not get off to an  auspicious start with Sheila feeling nauseous again and  having trouble with keeping things down again. But the end result was they gave her some compozine and we think we may have found something that works without bad side effects. Sheila did get chills and then got tired and slept for a little bit. When she worke up though she felt much better and her stomach had settled down. Unfortunately the next item for the day killed her appetite again and got her down a little. The NP came by to see us and said they wanted to put in a nasal tube and start feeding her with that. She explained all the reasons and reluctantly Sheila agreed to do it. But when I asked if she wanted to eat after the NP left she said - 'why? they're going to feed me!' so she didn't try eating. They came later in the afternoon to take her down for the proceedure, but she came back without the tube. Appears that they do not put you to sleep for this process or have you do a breathing treatment with the lidocaine like they do for the broncs - and putting a tube down your throat while awake and with no numbing was 'awful' - she told them to stop. So after she got back we got to work - a Boost Plus, bag of potato chips, then a little later we ordered dinner. Unfortunately she tried to order based on protien instead of what appealed and the fish was not a hit. We've been doing vegetarian long enough that 'meat/fish/poultry' just doesn't taste good any more. But she did have my mushroom, leek soup, another bag of chips and I went out and got a pint of Ben & Jerry's Chocolate Fudge Brownie - not the most nutricious food, but 1/3 of the pint got her calories for the day up to the breakeven point. Tomorrow we'll start on more nutricious (as in more protien) food and we'll start using the compozine to start the day until we can see if the acupuncture worked. I have another story about the acupuncture, but I'll save that for another day. Today we talk to the Dr's about a new plan and getting her eating again. Till tomorrow, keep smiling and sending those good vibes they bring us both strength and help us make it through :))
06/11/14- Mayo Clinic: Back In The Day
J&S Back in the day
 Here's a shot from 1987 - our real 'early days' together. It's kind of fun looking through the some of our old pictures and the memories they recall. Till tomorrow - be happy :))
It was a busy day. The Nutrition Dr came in early and we talked with them about finding a solution to the eating problem. We developed a plan for her to have 3 Boost Plus drinks a day and then to also eat several small meals. The main issue for right now is that she doesn't have any appetite so it's really hard to eat when nothing really appeals. But she's giving it a try and we'll see what happens.

Next up the NP came and talked with us and we had a good meeting with her about the realities of where Sheila is right now and the options that she has. At this point she still wants to try and avoid the tube feeding option but she's also running out of time as she can't afford to lose any more ground. The NP also explained more about the tube feeding thing and how it works. It is an option, but Sheila wants to try one more time to get enough food down to start making progress and gaining weight.

Final visit is the Dr. We talk and he agrees, reluctantly, to a final try and gives her until Monday to start being able to eat and keep her food down as well as her meds. So part of the test is getting back on her pills instead of all the IV meds shes been getting. So the next few days will determine whether she's going to be able to do this on her own or wheither she's going to need the feeding tube. If the nausea doesn't improve it's the tube on Monday. The tube won't resolve the nausea, but it will put the food and the meds straight into her digestive track and insure she's getting both nourishment and the meds she needs. So now it's just a waiting gaime to see what happens over the next few days.
06/12/14- Mayo Clinic: Sunshine Priviledges
A ride outside
  By the lake & fountain at the front of the hospital. Taken on our walk after a late lunch  - she's smiling behing that mask :))
It was a rough day with Sheila waking up early with bad nausea and throwing up again. She was able to take her meds and keep them down, but she wasn't able to keep any food down. The compozine didn't seem to work as well today and it wasn't until afternnon and the new medication, Marinol - which is basicaly pot in a pill - that she was finally able to eat and keep it down. So basically nothing to eat until around 2 in the afternoon. She had a vegatable casadia for lunch which filled her up. By the time she was able to try eating again, aruond 6:30 we ordered, but she knew with the first bite it wasn't going to stay down so we switched to a boost plus and she was able to tolderate that. So the Marinol seems to have helped both with the appetite and nausea, but she could only have it once yesterday. Supposedly she can have it twice a day as the prescription is right now. We're going to talk with the Dr tomorrow about getting it more often since it wears off fairly quickly and she needs to eat more than twice a day. So total for yesterday was 600 calories - not enough to even break even for the day.

On a more cheerful note, after that big lunch we did get out for a walk. They don't want her walking outside (liability issues as I understand it), but we got her this gigantic wheel chair, just what was avaialable on the floor, and I took her out for a ride on the grounds. The picture is by the pond they have out front. Tomorrow we'll hopefully get out again - that'll be our 'anniversary' treat. The acupuncture Dr also came by again and did a second treatment this time aimed more specifically just at the nausea. We'll have to see how that turns out tomorrow. So that's it from the hospital for today. It was a rough day, but we think we've found something that's going to work for her so she can get back to eating. Now we just need to test it a little more and be sure it keeps working for her.
06/13/14- Mayo Clinic: Wedding Day
Wedding Day
  Friday, 6/13/1988m Wedding Day - No mask hiding that smile. We were both smiling that day and we still are :)) :))
Well it was an interesting day. Sheila was scheduled for a Endoscopy to check out her GI tract and be sure there was nothing there that might be causing the nausea. So again its a no eating morning. They came for her around 11 but then there was this big debate over the anesthetic  to use . The one they normally use, Profofol, is on her allergy list as it doesn't work well for her. As in, give her some, give her some more, wait awhile, give her some more ok, now she's sort of asleep but wakes easily. So the Dr put it on her allergy list so they would not try to use it after her bad bronc, the one where she was awake for it and miserable. So finally they called the girls from the bronc lab in to find out what they were using and they used that. By the time this was all resolved and they got the procedure over with it was after 3. Then we needed to get her settled again and get her Marinol to be sure she would be able to eat. But starting to eat at 4pm and the cafeteria closing at 6:30 didn't leave much time to get the 1880 calories she's supposed to have down. But we decided to give it a try - she ordered from the new "High Calorie - High Protein" menu we have now. Linguine with Alfredo sauce. The sauce was terrible, but she needed to eat so she managed to get a little over half of it down. Then it was on to the Strawberry Shortcake. Next wait an hour or two and then she ordered the Flatbread Pizza with mushrooms, spinach & tomatoes. That was really good and she ate all of it. Again wait a little bit for things to settle, we curled up on the couch and watched an episode of Alias. Final for the day, I ran down and got a Klondike bar for each of us. So in 5 hours she managed to consume 1307 calories and 44 gms of protein. We're thrilled and hoping to make the nutrition departments 1880/day and 84 proteins for Sat & Sun. Once we show she can do it I think we'll be on our way home. It was a great anniversary :))
06/14/14- Mayo Clinic: Happy Dance - tomorrow (maybe??)
Happy Dance Day (again)
Home is starting to become a reality  :))  If things to according to plan we'll be home tomorrow and back out in the world passing our own smiles around. Till tomorrow take care and keep smiling.
 Today started out great and just kept getting better as the day progressed. Sheila got up with no nausea, got her Marinol and her Cyclosporin and then we moved to breakfast as soon as the cafeteria opened. Pancakes and a 2 milks and a little bit of a donut I got for us to celebrate her new ability to eat again. I headed home early to get laundry and tend to a few business/customer issues that needed to get done. While I was gone the Dr came by and told her the plan - a early morning bronc so she wouldn't have to come in for one next week and then if everything was good HOME :)))

When I got back we did lunch - Flatbread Pizza and a smoothie. Then we had meds to arrange and get picked up so we worked on that, insurance didn't want to cover the Cyclosporin, which the NP helped us get resolved and I needed a paper script to get the Marinol. The pharmacy only had 6 of the Marinol pills and told me the insurance wouldn't cover them - so I got the 6 and we'll work on the insurance issue Monday. Insurance or not she needs them. They are, we think, a key to her current eating and weight gain. At this mornings weigh in she had put a pound on :)) So we have the meds in hand to get discharged and we're really looking forward to getting home. We'll have to see what we're doing on scheduling and what else we have coming up when we get our discharge papers tomorrow, but home, our own cooking, our own bed and being able to snuggle for the night will all be wonderful. You never really appreciate a lot of things until you don't have them for awhile - then their real value comes home. So keep your fingers crossed and we'll see if the next report can't be done from home.
06/15-16/14- Mayo Clinic: Happy Dance Cane & Went
Crooked bed and surrounded by nurse & dracula (lab tech). Another pic of Sheila with the next update - Till then don't take anything for granted - be thankful for each blessing that filles your  day. :))
It's the 16th now, 3:30PM and I'm back at the Mayo waiting for Sheila to get back from a bronc. So starting from yesterday - she had a bronc in the room early, everything looked ok so they gave us our marching orders and we headed home. It was a quite but somewhat screwy day - the Marinol was making her a little spacy and very unsteady on her feet. So she wasn't up to doing much, but we did get the new pills put together and organized and she did eat a couple of times and I made her a  hight calorie (800 calorie) shake that put her over her goal for the day. So a fairly quiet afternnon and evening. This morning she called me around 5am and ask me to check her temprature - it was 101.5, not good - so we checked her oxygen, bp, etc. Everything was off, BP was high, oxygen was low 90's, etc. So she wanted to wait a few minutes and see if it went down. 1/2 hour later it was still the same result - slightly better but now BP was low, temps down just a little. So I called - take a tylenol and wait for a call back. Around 7 I got her the Marinol (more on Marinol in another post - it's for the nausea & works good for that, but...) and she needed it before we gave her they Cyclosporine (anti-rejection pill). So we did that and then around 8:15 she took her first pill. About 8:30 I got her up and we walked to the dining table - that's about 12- 15 feet, and she got seriously out of breath. Check her oxygen - it was 81 (not good should be in the 90's all the time) Check her BP and she's high 60's over low 40's - also not good. We put her on the concentrator and she takes her morning meds and has a glass of milk. The call back comes - bring her in, they're getting her a room. So back we go, a room and a slew of tests are waiting for her. They drain a bunch of fluid from her left side, and we don't know what else yet. But she's back now and feeling better (the Marinol has also worn off which helps with feeling better. I'll have another update later after we hear from the Dr on what's going on and what the plan is now.
06//16/14- Mayo Clinic: Feeling Better
Feeling Better
Back from her bronc and feeling much better now. They still have her on oxygen for now, but we'll see how she dues without it later today. Till tomorrow keep smiling :))
Well the tests that they have results from were all negative so the feeling at the moment is that it was the fluid they drained that was causing the problem. They do have a number of biopsies and a few lab tests that aren't in yet so the final verdict is still out until all the results are back which will be sometime tomorrow I think for most of them. When they are checking for bacteria some of those tests take several days and one bacteria can take a couple weeks to grow.

For now she's feeling a lot better and is smiling again :)) She slept the rest of the afternoon after her bronc and then we finally had dinner around 7:30 or so. She also wasn't having any nausea when she woke up and she ate dinner without taking an evening Marinol . Maybe it was that fluid that has been causing the nausea - still a little early to tell for sure, but it would certainly be good to have the nausea gone and not need to take that Marinol. It really does knock the nausea and it gives her an appetite, but it also makes her spacey and disoriented a little and very unstable on her feet. Need to watch her when she's under the influence as even though she's unsteady she'll get up and try to walk around. So like everything it has it's good points and it's bad ones. Reading the possible side effects one of them is nausea - I've see that with several of the drugs, they have the thing they're supposed to fix as a side effect. I heard a good explanation of how healing and sorta healing (side effects) work in a book I've been listening to on healing, Dr Frank Kinslow, The Secret Of Instant Healing, talking about how we're energy and that drugs often get a portion of that energy tuned again but then cause other energies to go out of tune thus causing side ef and fects. He's an interesting guy and I've read a couple of his books. Worth a read if your interested in the topic. That's it for now, back tomorrow with an update once we get one.
06//17/14- Mayo Clinic:Getting Better
Getting Better
As you can see the Honey is feeling good and ready to get out into the world again. We'll do a couplle tours of the hall tomorrow and then see if the world is ready for her :)))
Well the big news of the day is that she seems to be getting a lot better. We don't have any definitive answer on what happened when she went home, but both of us feel it was the Marinol and possibly the start of rejection.. She did take the morning Marinol today, but it was more of a insure she didn't get sick than feeling nauseous when she woke up. In fact she said she didn't feel nauseous at all when she woke up. She didn't take the marinol at all after the first dose and the plan is to try getting off it completely tomorrow. The Dr has also changed one of her other meds (for her nerves) to Ativan, it's very similar to the meds they use to put her to sleep for the broncs. We noticed that after the broncs she would be feeling better and wuold not have the nausea so this is a pill veriou of what she gets for the broncs. A lot lower dose and shouldn't knock her out during the day. I also think that the accupuncture had a lot to do with her recovery. It just took a little while for it to take effect. But for nnow she's feeling a lot better, we still have some biopsies and other tests out, so the Drs are waiting before they come up with a final decision and everything is still up in the air. Since we don't have any decisions we're hoping they may release her tomorrow, just have to wait and see. It may be we'll never get an 'official' verdict on what haappened. Not sure it really matters that much - it happened - it's over (that matters) and she seems to be feeling much better. Her oxygen is staying in the 90's which is where it needs to reside and it does drop a little when she get's up moving around. These are all pretty much normal for all of us - we just don't ahve a monitor on all the time to measure it. I did run home again today - forgot her slippers and she doesn't like those sticky socks they make her wear here. So she has everything she needs - a sure sigh that it's time to move on :)) Till tomorrow, be happy, be safe and remember the smile you give today will return with interest tomorrow.
06//18/14- Mayo Clinic:Getting Globbed!
A candid shot for today. She's getting the ANTITHYMOCYTE GLOB - that's the medicine to stop the rejection. It's a 5 to 6 hours drip.
Ok, answer is finally in along with an explanation of why she didn't get the "Contact" restriction when she first came back from surgery. Because of her previous bout with Mycobacterium Abscessus, 2012 when we did the IV infusions at home, they did not want to turn off her immune system immediately after the transplant which they do with most transplant patients. But now with all these broncs behind her and several samples tested for signs of it with negative results and in order to stop the current rejection they have decided the rewards outweight the risk. Kind of a 'no brainer' - they have to stop the rejection and then if there are other issues we'll deal with those later. So to stop the rejection, which just started so we caught it early, they are going to give her that treatment now. Basically they turn off her immune system with this new treatment and that causes the rejection to stop. Then as her immune system comes back they control it with the anti-rejection drugs so that it's back enough to stop the current inhabitants (the current live-in bugs) from reviving but off enough so it doesn't attack her lungs. Most of us never realize that we have a whole slew of unfriendly critters (bacteria) living in our bodies. They are all kept in check by our immune system. So the trick with a transplant is to walk a fine line between keeping those critters in check and weaking the immune system enough so it doesn't attack the transplanted organ. We'll have to wait a day or two I think to find out if this one dose is all she needs, but we're hoping it will be. It's an uncomfortable day when you get this treatment. They start with Tylenol & Benadryl IV to help reduce the side effects but it's still chills, sweats and assorted other wierd things going on. The good news for the day is that she's gaining weight,, so we're still able to pack in the calories she needs (some of it's water from all the fluids she gets with the IV's) but it's not all water and she's tarting to look and feel better (fill back out) :)) That's it for today - ya'alll be happy and enjoy the day.
06//19/14- Mayo Clinic:Mickey comes to breakfast :))Mickey Comes To Breakfast
Well we didn't invite him, but Mickey is always a welcome guest wherever he decides to appear - a smile is always welcome :))))
Well the day got off to a good start when Mickey Mouse put in a surprise visit and got us both to smiling and laughing early. The day was a quiet one and the Dr didn't stop by until afternoon. They have decided that putting the port back in will be a good idea. Sheila's arms looking like a battle ground and they're starting to have trouble getting their daily pound of blood, so the port will simplify that process and give her veins a chance to heal. We had suggested it a few days ago and they discussed it and agreed so they are scheduling that for tomorrow. She also will have a bronc on the schedule for tomorrow so it'll be a busy day for her. If all goes well and the bronc looks good then they're planning on discharging her after the bronc.

On the rejection, they now have to wait 7 to 10 days and then they'll get some more blood and probably another biopsy from her lungs and check for that protein again. So for now her immune system is scaled back a lot and we just need to be sure that we take the normal precautions - mask outside the house, wash hands a lot, etc. We also want to start upping the walking a little along with getting back to physical therapy and helping her get back in shape. This time we're going to stay home for awhile. June has been mostly a month in the hospital so we'll see if we can make July mostly a month at home - with daytime visits to the hospital :)) The hospital is not exactly the best place to get a good nights sleep. Always someone poking their head in to start/stop an IV, give you a pill or just see if you're still here :0 - so hopefully the next update will be about the new port, a successful bronc and how good it is to be home again. Till tomorrow - to quote Hawkeye from MASH, "You can laugh or you can cry...." we prefer to laugh, hope you do as well. Keep smiling :))
06//20/14- Mayo Clinic:Second hand sunrise - Second hand sunrise
Sunrise seems to lose something in the translation when you see it as a reflection in the mirror windows across the way :))
Well it was another one of those days - we went into it hoping for our release papers but it came and it went, not quite according to plan and we're still here. No one came by after the bronc, which turned out to be mid-afternoon rather than mid-morning so we're not sure if something was up or if it just got too late by the time they were done with her. It was a screwy day all around. First the bronc girls came to pick her up early - we questioned that as they were supposed to do the port first last we heard, but no she's scheduled first thing they said. 1/2 hour later they were back with her, oops, typo on the schedule. The port guys would be up for her in a few minutes. So then they showed up and carted her off for her port. She got back from that around 11:30 and the bronc was scheduled for 1:30 now. The bronc girls came back around 1 for her again and brought her back around 2:30 - so breakfast was at 4PM again. We'll have to wait till tomorrow to find out what's going on I guess. We're just a little bummed that we didn't get to go home today.

Her oxygen is back up a little better this evening and her heart rate has come back down a little. Right now oxygen is 97% and heart rate is 71 (she's having a little snooze).  The bronc always does that - they wake her up to go back to the room, but the drugs are still there and a nap always follows getting back to the room or getting home when we've done them as outpatients. It's been 2 months now since the transplant and been a pretty rocky road so far. Hopefully it's going to start smoothing out a little bit and let us get back to having a life soon. The hospital is not really a great place to live - not bad for a visit, but not exactly an entertaining hotel. Oh well, I think home is on the horizon and for more than a night or a couple weeks this time :)). Till tomorrow - take care and keep smiling <:~)=[
06//21/14- Mayo Clinic:Minor Surgery Installing a drain pipe
Sheila got this fancy table (her bedside table) to lean on, a dose of happy juice and a local for the drain pipe insertion. Here we see the Dr checking the setup and Sheila feeling no pain :))
The X-Rays are still showing that spot I mentioned earlier, a hollow where fluid has been building up, so they decided to put a drain tube back in and let it drain and get the air pocket out of there. The Dr said it will probably take a day or two for this to work & explained the benefits. The proceedure was done right in the romm and the picutre is near the end of it. The tube is places at this point and the Dr has moved around to check the suction device that they use to keep track of the fluid. They use suction on it to draw the fluid and the air out of the pocket. Right now it appears there's a small leak inside somehwere, so that needs to heal (seal) so the leak stops and then the suction can draw the remaining air out and the lung can finish filling that space. That's what needs to happen for this to be considered healed. So for now it looks like next week will be the earliest that we may get out of here.

I got home today for laundry, mail, &tc. Sheila only has 3 pairs of these pajama bottoms that we bought her for use in the hospital so have to do laundry a couple times a week to keep her in clean clothes. I also take my showers at home when I go. I've snuck a few in here, but they 'prefer' for family members to not shower here (not sure why) but if you want to shower here you have to do it when you have a 'friendly' nurse on duty. We also talked to the NP about getting a little quiet time - an hour or two a day when no one is going to pop in so we can have a llittle time to ourselves. We're missing our hug breaks that we get at home and just a little quiet time during the day when our mind isn't on who'll pop in next. A hug a day keeps the blues away :))
Till tomorrow, keep smiling and those good vibes coming.
06//22/14- Mayo Clinic: A Gaggle Of Geese A Gaggle of Geese
In case you don't know -  gaggle is a group of 5 or more geese.
It was a quiet Sunday. Dr stopped by to check how the drain was working. Talked a little about the small leak and said we need the leak to plug itself up and heal before they can finish the drainage projet. Its a small leak so we're hopeful that it will close up in a day or two. Other then that the day was uneventful - we watched the afternoon storm, watched the gaggle peck its way across the lawn out the window and otherwise just mused the day away.

We started listening to EUFeeling by Dr Frank Kinslow and are enjoying it so far. I've listened to this particular book of his several times and seem to get something new from it every time I listen to it. I've also listened to a few of his other books and recommend The Secret Of Quantum Living for everyone. If you're looking for a way to stop the constant babble in your head it's an easy method to follow and it works.

Speaking of babble I feel like I'm babbling today. I guess because there's not much new to report and so I'm just babbling :) )  Sheila is snoozing,, I'm writing between mini-catnaps and babble is about the best I can muster at the moment. I think I'll just go snuggle for a bit and stop babbling for now.

Ya all have a wonderful day and I'mm be back tomorrow with more on the continuing sag.......
06//23/14- Mayo Clinic:  SnugglesSnuggles
Ok, modified snuggle so you can see the smiles :)) usually her head is on my chest.
After a good beginning we had a little hiccup, Sheila got sick again, but it wasn't like the old nausea. We weren't sure exactly what happened at the time but she couldn't keep breakfast down. But after that she drank a Boost Plus and ate lunch and everything was fine. So it appears that is was a minor incident. Later in the day we heard they were holding her evening Cyclosporine and when the levels finally showed up we realized that her very high level of Cyclosporine was probably the cause of the problem.

The rest of the day went well. The leak is still leaking a little, so the tube is staying in for now. They are also scheduling a bronc for Wed, not sure what time yet. We're going to talk to the Dr on rounds tomorrow about the high Cyclosporine and see if he also feels that could have caused the morning upset.

We also had a talk last week about the meaningful lack of snuggles in the past few weeks and both agreed we need to get back to more snuggles. So the picture is our new normal morning/evening routine. If folks come in we can talk to them as well both laying in bed as we can sitting apart in the room. We also talked to them about getting the DND sign back so we get 11PM to 5AM undisturbed - no testing, waking up etc. so we can get a better nights sleep. Appears we'll be here a little longer so a little adjustment was necessary to keep us smiling :))
Till tomorrow keep the good vibes coming and keep smiling.
06//24/14- Mayo Clinic: The Hobbit House - Lake of the Ozarks
The more things change the more they stay the same - me computing Sheila reading - around 1994 sometime at our house on the Lake Of The Ozarks.
Might as well start with the big news of the day - the Dr came in this morning and told Sheila that he knows she's been trying to get the nutrition issue resolved but that it isn't working. He went on to be sure that she understood that it has gotten to the point where it has to get resolved or she is not going to make it, the new lungs need more nourishment than they are getting so they can heal from the surgery along with the rest of her body. So he knows that the problem last time with the nasal feeding tube was the lack of anesthetic so he offered her the option of  having the tube placed tomorrow while they have her under for the bronc. She's agreed to do this so she'll be getting a feeding tube tomorrow. Between what she can get overnight with the feeding tube and what she can eat she should start getting her strength back quickly, but we still have to see if she an tolerate the tube or not. It is uncomfortable, but it's either that or the stomach tube and both are uncomfortable just in different ways. So everyone put on your good vibe cap and be sending her all you have tomorrow - Wed. . This will be a hard one, but I know she an handle it if she can get past the first day or two with it.

It was one of those days - I also went home to do the laundry, get the mail etc. and we got a bill from the Mayo that shows our share of the bill as $11, 628 which caught us by surprise. When we met with the financial people back in the beginning we were told that everything except her medications (about $6k/year) would be covered between Medicare and our supplemental insurance. So while Sheila is off for her bronc I need to go talk to the billing people about what the $11k is for. But that's just money - the important part right now is that the honey tolerate the new feeding tube, so let's all concentrate on that for the next few days - send SMILES - thanks :))
06//25/14- Mayo Clinic: Sleeping HoneySleeping the day away
  Much of the day was spent snoozing after the bronc/feeding tube
Ok, brighter news for today. First the feeding tube - the Dr gave her a heavy dose of feel good (sleepy by) medicine for the bronc & tube insertion and then didn't wake her up afterward, so she slept a lot of the day. But that gave her system time to get used to the tube. She did have breakfast and then later in the day (arount 4pm) dinner and was able to eat well. I think the pressures to 'eat more' have been taken off with the tube to supplement what she's able to eat so that's making eating a little less stressful. She still getting used to the tube, but she is getting used to it and she is tolerating it ok. I think the big issue before was just trying to put it in while she was awake and without enough anasethic to really numb her throat. That reslted in a lot of gagging as they tried to get it in place. This was a much better way to do it.So tube is in, tonight will be the first feeding with it and supplementing what she's getting eating will get her gaining weight and getting back on her feet.

On the $11k turns out it was a clerical error :)) We had some charges that came in late for the inital check-in  &surgery process for the transplant and they didn't get submitted to the insurance. So they have corrected that and submitted them to the insurance. We also checked yesterday and we're out of the donut hole now, so the cost of drugs for the rest of the year will be down a lot.So it was a good news day and we even got a little snuggle time in after dinner. We're doing much better now that we've gone back to making time for some snuggles to start and end the day :))
Till tomorrow - be grateful & happy - and pass it on. Remember smiles come back with accumulted interest!!
06//26/14- Mayo Clinic: On my morning walk Mayo Fountain
  This is one of the many fountains around the Mayo. The grounds ere are really wonderful with lots of fountains and running water.
We're continuing to make small steps forward. The Dr took the  suction off the chest tube he put in last week. He said that the X-Ray showed the lung was fully inflated now and that the drainage was down a lot. So she's not connected to that suction hose anymore. Tomorrow they'll check the X-Ray again and if everything is still good they'll pinch (block) the tube for a few hours and then possibly remove it. They also took her off the oxygen again. They had put her back on it to help heal that small leak. Little known fact - oxygen molecules are bigger than carbon dioxide molecules, so with a real small hole the oxygen may block the hole and help it heal. So they took it off, so now no hoses attached to the wall during the day. The feeding at night is continuing but we haven't seen any positive results yet. Weight is staying about the same so far. Only been a night, but we were hoping to see some immediate results. It's a test I guess - let's see if we can make them have an upset - but all those good vibes flooding in from out there are keeping the spirits up so keep them coming they really do have an effect.

I had an oops last night - was tired and shut down the home computer by mistake, so instead of a walk this morning I got to run home to start it up again Team Viewer is a wonderful tool, but it needs the computer running to work. I'll have to pay more attention when I shut down tonight. Maybe I'll try to shut down before I'm falling asleep, It's interesting thorugh to doze off for a minture and wake up to find that some key was pressed for a bit and you have 2 or 3 lines of a random letter :)) Till tomorrow keep smiling and pass thos smiles out - the world needs them right now
06//27/14- Mayo Clinic:The First Bus Good Old Days
  Here's another oldie but goodie - our first bus along with the navigator :))
Well it was a day of ups and downs. Sheila has a permanent runny nose (more so since the transplant) and the nose spray has been dealing with it, but the feeding tube prevents getting a good spray in that side, but doesn't prevent it from running, so she spent the day dabbing at her face and snuffling.

The tube did come out today so she's tube free at the moment, but there's still a small leak in her lung and so they put her back on oxygen to see if that would keep it from building up the air pocket in her chest cavity again. It didn't show up until after they took the tube out - that's Sheila, always the problem child lol. Along with that her appetite decided to take the day off, so we're struggling on getting the daily intake up for today. We've decided that its all just a test and the prize for passing the test is life without oxygen tanks. Sometimes we wonder if its worth it, but that's because the memory of struggling to breath fades fast. Our mind had this wonderful way of forgetting the unpleasant and just remembering the pleasant about things. For now Sheila the transplant has been a major struggle, her system doesn't like the meds and she's had a lot of problems . For some it's a walk in the park, a few days in the hospital and they're home and doing great, for some it's a real battle. But everything has it's trade offs and once she settles into this new way of life I think the pain of the cost will fade and the job of breathing will always be appreciated. We didn't hear anything back on the second X-Ray tonight, we're assuming they're waiting to see what the morning X-Ray shows tomorrow and then we'll go from there. So till tomorrow, take a deep breath, smile and say thank you - Life is Good :))
06//28/14- Mayo Clinic: Chow TimeChow Time
That gizmo on the pole is the machine for keeping the feeding going and the bags on the pole have the food & water it dispenses.
Good day overall. Day started off with a positive gain on the weight and then the Dr came by early and said that her X-Ray was good, lung is fully inflated and the pocket where the air and fluid had built up was gone. That's another step forward. So we got off to a good start. We didn't go out walking, but we did walk around the room several times. Sheila is working on getting up out of the chair on her own and walking around. Doesn't seem when you're well like putting your shoes on and tying them by yourself is an accomplishment, but after most of the past two months in the hospital at this point it is - and one she did on her own :)) Now that the weight is starting to come back it means that she's getting the nourishment her body needs to finish recovering so it's time to start exercising a little each day and start building back the muscles she's lost. They say every day in the hospital needs 3 days to recover so we have a few months of recovery still ahead but we got a good start on it today.

I went home for laundry and to start getting things ready for our return. I ordered a Contour Matress Genie. It's a inflatable wedge that raises the head of the bed - so an inexpensive way to get the same effect you see in the picture here. When you're doing the tube feeding you are supposed to keep your head/chest raised a little to prevent any issues with the fluid coming back up your wind pipe and into your lungs. So this seemed lite a good solution, and you can adjust the angle to whatever you want. It'll probably be a few more days before we head home, but barring any unforseen complications it does appear to be approaching. I think we'll be doing the happy dance soom :))) - Keep Smiling
06//29/14- Mayo Clinic: SunsetSunset
The sun sets behind the building across from us, so they're usually hidden, but tonights shone all across the horizon. :))
Sundays are usually pretty quiet and today was no exception. The Dr came by but didn't have anything new to say. The X-Ray still looks good and they working on getting her Cyclosporine, the main antirejection drug stabilized. Sounded like they may want to get that done before we go home. Weight went up a little 91.5 to 92.1 so the eating/supplement combination is working. We went out for a couple of walks, 1 lap on the first walk and 2 laps on the second one. Now that all the tubes are out a shower is much easier so Sheila took a shower and we curled up on the couch for an hour or two (snuck in a little nap). She is starting to feel better as well as putting on some weight. I think the extra calories will help her to feel better and have a little more energy.Today, including the nighttime supplements she went a little over 2000 calories :)) We're still a little light on the protein I think, but we'll get that adjusted. Getting more protein will be easier once we get home and can have a wider variety of foods to choose from. Tofu & Seitan are high protein meat substitutes that we both like and they just don't have them here.

I think home may be getting closer. We'll have to see what the Doctors say on Monday. The fact that her X-Rays continue to look good is a real positive sign. We do need to test again for that rejection issue and be sure it's fully under control and get her anti-rejection drugs balanced and stable, but things are starting to line up finally. So ya'all just keep the healing vibes flowing this way and we'll be out of here soon.
Till tomorrow pass a few smiles along for us -
06//30/14- Mayo Clinic:  Good MorningGood Morning
Good Morning world :)) Is it time to go home???
Just more of the same today - eat, take pills, walk the hall a little and wait for the Doctors to decide that we're ready to go. The big issue now seems to be the nutrition question and we talked with one of the dieticians about how she's doing and she seemed to feel that we had it under control at this point. We are getting some different numbers from the Dr than what I'm getting when I track her intake so we've asked them to have nutrition come by so we can compare numbers and see where the difference is coming from. It still looks like we're getting close to leaving, but we need to get everyone on the same page. Hopefully a meeting with nutrition tomorrow will get this straightened out and we'll be heading home Wed - that's how it's looking but we don't have a definite answer yet.

Meanwhile back at the ranch, without the night time feeding she consumed 1654 calories and with the 425 she gets at night that's 2079 for the day. According to this program I'm using that would put her gaining around 2 pounds a week which I think is a reasonable weight gain. I think the Dr is still considering whether she needs the feeding tube or not and we're assuming that she still does for right now. That puts us in different places for considering when it's time to go home I guess. We're good with continuing to use the tube for another 2 to 4 weeks as she continues to be able to eat more and we both feel that by the end of next month she should be able to get rid of the tube. So the debate continues and hopefully we'll get it resolved tomorrow and be able to leave Wed. So we're changing the request - we're resdy for everyone to start sending GO HOME vibes for us now :)). Till tomorrow keep smiling and we'll be joining you passing them out soon.