Food Restrictions

The more I learn, the worse it gets.

I remember earlier this summer, my brother-in-law asked me what kind of food restrictions I had with transplant. "Oh, it's not too bad," I replied. "Grapefruit (reacts with medication), raw fish (no sushi), no buffets, only pasteurized cheese (all possible bacterial hazards) ...that's about it."

Boy oh boy was I wrong! My recent education on transplant no-no foods all started with an episode of low blood sugar. I was at my friend's house doing yoga. I'd forgotten to check my sugar beforehand so we paused halfway through. My sugar, it turned out, was 29. Oopsie! Down went the glucose pills right away and I asked my friend if she had any juice. Nope, but she did have agave syrup. I had some of that and between that and the glucose pills I was back to normal and continuing my yoga in no time.

Flower of the agave plant

When I got home, I was telling my husband Todd the story. As soon as I said the word "agave" his facial expression changed to one of slight anger. "How do you know that's safe to eat?" he demanded. Knowing that agave came from a cactus, he thought it might be similar to tropical fruits, a category of things we were supposed to get permission to eat before doing so.

So I asked my Duke Lung Tramsplantees facebook group if anyone had heard whether or not agave was safe to eat. Everyone commented that it probably was because it was a highly processed food. So that was good.

Meanwhile, I had started doing some research into all of this and came across a very comprehensive document of diet guidelines for immunosuppressed patients. It was incredibly informative, but it also made me sort of angry. There were more things than I thought that I was restricted from eating. A lot more! And things I had still been eating. Check out the restrictions for dairy:

• No non-pasteurized or raw milk and milk products made from non-pasteurized or raw milk
• No cheeses from delicatessens
• No cheese containing chili peppers or other uncooked vegetables
• No cheeses with molds (such as Blue, Stilton, Roquefort, Gorgonzola)
• No Mexican-style soft cheese such as queso fresco, queso blanco

I confess I have had a couple of foods that fall into this category. I have had a deli sandwich or two (only places I thought the quality was high), I had queso fresco (cheese dip!!) on several occasions and I will likely continue to have it. Unpasteurized feta is also a no-no but even though I've had a lot of feta I think I've managed to avoid unpasteurized stuff.

The next category on the list is meats. This stuff is all pretty straight forward: everything has to be fully cooked, blah, blah. (I admit to having slightly under-cooked steak a couple of times - and I live to tell about it!) Also no raw/under-cooked eggs - unfortunately Caesar salad dressing falls into this category and I love Caesar salad.

The fruits and nuts category has a couple of downers: no unroasted raw nuts (pecans!!!), no roasted nuts in the shell (peanuts!!!) and no fresh salsa found at grocery stores (I love the salsa that Whole Foods makes!!). I subsequently found out that pomegranate is another fruit that interacts with our medicines...pomegranate!! I have definitely had pomegranate since transplant, although in small amounts. I'm going to try to avoid it now. I also had peanuts at a baseball game but I probably would again.

The vegetable category is pretty straight forward: wash everything before you eat it, no raw sprouts, no salads from delis.

Most bread, grain and cereal products are alright.

And then we get to the beverages category...  No unboiled well water (that's what we have at our mountain house - pain in the ass!), no non-pasteurized fruit and vegetable drinks, and THEN the bomb hits: No wine or unpasteurized beer. Unpasteurized beer! I also love wine. Well, before I got completely up in arms I had to figure out what unpasteurized beer was. Turns out it's pretty much everything made at your local brewery. Most big-time bottlers pasturize all of their stuff but small set ups often don't want to spend the extra money.

In case you didn't know, I very much enjoy a beer from a local brewery, even though ideally we are supposed to avoid alcohol. In fact, so do most of my friends as well so we spend a good amount of time at such places, or at places that serve that kind of beer. In fact, Raleigh has become a hot spot for small breweries. We have 21 of them that have sprung up all over town. It's awesome! So yeah, this is one rule I might have to continue to break. I also love wine, red wine...especially with a slightly under-cooked steak lol.  By the way, all of this stuff I drink in moderation.

So what is the point of all of this? The point is, it kind of sucks to eat after transplant because you have to think about a lot of things before you just shove them into your mouth. And honestly I'm really bad at this part of being a transplant patient. Most of the time Todd serves as the referee. I'm lucky to have him.

The other thing with all of this is that even with all of this information, we still have the right to choose what we eat - even if that sometimes includes things from the "bad foods" list. There is risk in almost everything in life, and with transplant you are constantly weighing whether or not things are worth the risk...  Should I go to the Fair where there will be 80 billion people wandering around, some of them sick and dirty handed an unaware of spreading their germs? Is there anything at all I can eat at Subway?? Am I wiling to give up my favoite chewy dark chocolate granola bars which contain raw oats? Should I go on a trip to Montana if it makes me halfway across the country from my doctors? What if, what if, what if???

In my opinion there is no right answer to these questions. Maybe there is a "should" but that doesn't mean there is an absolute "have to." We all have things we love to do and eat. And while most of us follow the rules most of the time, I think a little bit of cheating is okay.

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My Stay in Pictures

Waiting to hear if it's "a go"

Last weekend I downloaded all of the recent pictures from my phone and wow! I discovered another version of my hospital stay compared to the one Todd wrote so comprehensively. These are more like snap shots of what life was like. And so I share them now with you. Warning - there are a couple of gross pictures.

Being wheeled to the final holding area, my crew behind me

It's a beautiful day for a transplant! View off the roof of Duke.

Clearly this was very early on post transplant because I still have the line in my neck. I don't remember taking this or having it taken and by the size of my pupils I can see why.

Hand bruised and puffy from attempted IVs; my other arm was worse. That's what 12 hours of dehydration will do to you.

Blood draining from my beautiful new lungs into chest tubes

Yes, the nebulizer treatments weren't *quite* over yet

Mouth swabs in ICU...my lifeline for a dry, dry, dry mouth that couldn't have any water

Many, many medications running into me

Me with the stylish nasal-gastric tube that gave me nutrition before my G-J feeding tube was placed in my stomach.

Ahh...thickened liquids...this is fruit punch Gatorade, one of my stand-bys. I hated this stuff but I was glad to be able to drink!

Walking down the hall of 3300 with the Swedish walker

Oxygen saturation: 100%!!

An attempt at an artistic picture.

 

Dirty socks! The doctor Gustavo was always preaching about "dirty socks" - the more you walk the better you recover!

Laid up in the bed...at least I had graduated to pajamas. You can see I'm connected to two chest tubes. I was also hooked up to a heart monitor (with 6 leeds!) and an IV all the time. It made getting to the bathroom a huge chore!

Toward the end of my stay...I'm feeling better you can see. But while there were good moments like this, there were still many times of extreme fatigue and other issues.

These two animal collages from Ellen Tai were the best things anyone could have sent to me while I was in the hospital. I hung them on the wall and they always made me happy to look at. Everyone who came in my room also saw how adorable our pets are. Thank you Ellen!!!

Today's (and everyday's) Plan: WALK; Also, this was my rock star day of walking 30 laps - that is 6 laps shy of 2 miles.

And...home. Adjusting to new routines (here my G-J tube is being flushed) and life without kitties or dogs allowed in the bedroom which equals more snuggle time on laps during the day.

My G-J tube (the thing coming out of me) and holes from where my chest tubes were. This was taken right before my stitches were taken out.

And here is a look at my clamshell incision staples!

A look out the window at Duke clinic - where I have spent so much of my time - on a rainy day. The outside of the buildings sure are pretty.

Laura got her lungs!!

 Note from Laura: I created this page for Todd to update throughout my surgery and the first part of my recovery. 
Note from Todd: There was a long delay recovering a changed password to allow me to compose this blog entry. I apologize. I will update daily until she is ready to resume her blogging.

Thursday Oct 23 2014

7:53 am (Laura)

Was awoken by a call this morning...maybe this will be the one! Feeling hopeful and excited right now. The only information I have right now is that the lungs are not high risk and that I will not know anything about the lungs until this afternoon.

I have hesitated to send out an email update recently...things have been very up and down and I have really been struggling (mentally, although also feeling pretty down/crappy because of bad anemia). However I did have a pretty awesome doctor's appointment on Tuesday! If you want to read more about what's been going on please check out my What's the Latest thread.

Anyway, off to the hospital soon!

1:57 pm (The rest of this blog entry written by Todd)

So far everything has been going very smoothly. Laura has a great attitude and we are all really positive this time around. We found out that the donor o.r. time has been pushed back to 6pm, so the earliest we will hear if the lungs are good will be after that. We should know for sure by 9pm. 

8:17 pm

The lungs look great. It is a go! 

We are very excited. It will be a long night. I will send out another update when the surgery actually begins, most likely in a couple of hours.

Yeah!!! 

10:39pm

Update: Surgery began 10:04pm. Everything is going well so far. 

Friday Oct 24 2014

12:54 am
About midway through surgery. Left lung removed and new lung in place. They are beginning to work on the right lung now. Everything is going smoothly.

3:15 am
Both lungs are in. Just talked with the surgeon and everything went great. Next step is for Laura to be zipped up and moved up to ICU around 4-4:30am. They will monitor her for an hour and then wake her up around 6:30. There is a shift change around then, so it may be as late as 8am before we can go in to visit.

7:16 am
Laura is now in ICU. She looks good. She is running a fever, but other than that she is doing great. They woke her briefly, before I got to see her, and she was able to follow their commands. The staff is undergoing the shift change now. I will update when I get news from the morning staff and get to talk to a doctor.

1:43 pm
Been a long morning/early afternoon. The plan is to stabilize Laura so they can place an epidural and then take her off the vent. The problem so far seems that when she is close to stabilized, she wakes up and gets anxious about having the breathing tubes. We are still waiting for the epidural which I hope happens soon for pain management. She is still running a slight fever, but that is nothing to worry about day of surgery.

 6:25 pm
Very long afternoon. We were asked to leave the room for a couple of hours while they placed the epidural (YEAH!), gave her a "bath" (yeah), and performed her first "bronch" (best way to inspect the lungs and check for any rejection). She is still intubated, but she is on the minimal setting the ventilator will go on and we hope she will be extubated soon (double yeah).

It was a long two hours with little knowledge about what, but we are all much relieved. Things are progressing and who knows, she may be up and out of bed tonight. 

8:53 pm
After a long wait for epidural medication, she finally got some good pain management quickly followed up by extubation!!! 8:45 pm, off the Vent! She was able to cough well and can speak with a weak, but cute as hell voice. She is breathing normally with her new lungs and her oxygen saturation is 100% without o2!

She rocks! 

Saturday Oct 25 2014

9:04 am
Laura had a busy, but good night. She had a scan of her new lungs and it looked good. She got a little rest, but not quite on a normal schedule yet. Her blood pressure is running a little low, so they are working on that, but nothing overly concerning.

The plan today is to place a picc line (for iv meds), get her up and walking, do a swallow study and see how close she is to drinking/eating again.

She looks great. Sounds good. Very responsive and alert.

3:18 pm

Good day so far. Laura just completed her first walk like a champion. She really did well. No need for oxygen and her lungs did great.

She also had an encouraging swallow study. She will have to wait until Monday for a full study with visuals, but the therapist said if she were to bet, Laura will pass.

Her voice is getting stronger. She is doing great.

And in other news, picc line was placed in-room. Very education process. 

All in all, great progress. Still need to solve the bp issue before moving to step down. I have a feeling she will do that in next day or so. 

Sunday Oct 26 2014

9:23 am 

Laura had a good night. She got some rest and had already walked a lap (400 feet) before I got here at 8. The doctors say that she looks great and the only issue is the continuing blood pressure/fluid volume battle. This is not unusual after this surgery. She continues to improve, but still has a little way to go. Nothing concerning. Her pain management is doing very well. She is comfortable, alert and very bright and cheery.

Goals for today include removing the first couple of chest tubes, which will probably happen very soon, walking more and most importantly stepping down from ICU. She will NOT be getting a bronchoscopy today! Small victories.

2:34 pm
Awesome morning/afternoon. Laura walked another lap. Her BP is getting better all the time. She had her second daily PFT (Pulmonary Function Test) and it was up 10% from yesterday, which is great. She had 3 chest tubes removed. There are others that will be removed in a few days, but these included the two largest ones. Her voice getting better. She really wants to start drinking water, but we will have to wait until tomorrow for the swallow test.

Oh yeah, one more thing, she is being moved to Step Down! Yes, that is right in under 60 hours she will be leaving ICU.

Monday Oct 27 2014 

9:39 am

Laura has a busy and unrestful night. They had her on an insulin drip so they were checking her blood sugars every hour. So she got pricked every hour all night long. Otherwise, she is doing great. She walked a total of 4 laps yesterday. The goal is to walk 20 laps in a day (A little over a mile). 

She is slowly getting unhooked from things. Yesterday they removed 3 of her chest tubes. This morning they removed her insulin drip. 10am is the last hourly blood sugar check, then they will go back a more reasonable schedule. Her blood pressure is doing well. They no longer even have her cuffed to automatically check it. She has is no longer wearing her pulse ox which measures her oxygen saturation. It is amazing that she is not only not using oxygen, but that it isn't even monitored unless she is walking.

The big step today is the swallow study. They should be doing that soon. She really wants to pass that. Being able to drink something is really the only thing she misses right now. Maybe even more than her kitties. No, that isn't possible. Sorry for even suggesting that Gus and Diosa.

Other than that, more walking today. 

10:53 pm

It was an eventful day. Some tough spots, but mostly really positive. It is hard to believe how quickly Laura has been improving.

The swallow study went very well. She didn't pass all the tests, but she passed the important ones. She began on thick liquids this afternoon and also passed the soft food test, so after one more gastric study tomorrow, she should be able to begin eating. They will redo the swallow test on Weds and we hope then she can have thin liquids and/or solid food. Today's result is a huge relief. Looks like she will avoid the dreaded feeding tube.

This afternoon we got moved to a larger corner room on the same floor. It has a great view of some green area with a few pines and a old willow tree. It is hard for me to articulate how much more this room radiates positive vibes when compared to the previous room. A very welcome move.

As I mentioned this morning, she was super tired today from lack so sleep (and just maybe a huge freaking surgery). She was lying down nearly all morning. After we moved rooms, we finally got around to attempting her first walk of the day around 2pm. It was rough. Laura kept getting dizzy. She would only make it a few short steps and have to stop and sit down. She finally gave up after about 30 feet and we wheeled her back in a chair. She was frustrated that something out of her control, this dizziness, was hindering the walk. Also, it might have seemed to her that we didn't appreciate what she was going through. This really stood out to me, mainly because this is the first time since the surgery that I have seen any frustration from her at all. She has been so positive. She is an impressive person. I am so lucky to have her.

Laura's surgeon, Dr Daneshmand, ran into us during this aborted walk and gave Laura some encouragement. He mentioned some possible causes for the dizziness. He said that it really is common and also gave some instructions to help with it. He was very impressed with her progress and especially the strength of her new lungs. He said she must have had a great surgeon. Yes, he is a jokester and overall a great guy and a wonderful surgeon. We were lucky to get him.

After we got back, Laura decided to sit up in her chair for a while. After an afternoon filled with starbucks iced coffee (no ice + thickened), gatorade g2 (grape and tropical punch, both thickened), various dressing changes and numerous other items, Laura felt up for another attempt at walking at 6:30pm. This time it was like a completely different person was walking. She experienced no dizziness. She walked a faster speed as the previous days. She completed 3 laps (900 feet) with only one rest. Amazing recovery from earlier. 

Tomorrow, she may get to eat for the first time since Thursday morning. I wouldn't be surprised if she walks a half mile.

She is rocking this!

Tuesday Oct 28 2014

5:05 pm
Well, I spoke too soon yesterday. We just just the results of the gastric study and it seems that Laura's stomach is not quite working well enough for them to trust her to eat yet, so it will be the dreaded feeding tube. She has been dizzy/nauseous most of the day, but seems much better after an afternoon nap that coincided with a dose of medicine. Now she is up and sitting and looking forward to an afternoon walk.

Laura got one of her remaining 4 chest tubes removed. She is down to three, when she had 7 leaving surgery. This is good progress.

She has not walked yet today. She ended up having to lie down for the gastric study, which could have biased her results. She does feel much better right now and is ready to walk in a few minutes.

Her voice is getting better each day. She is looking great. She is making progress and nothing unexpected has happened yet. They will redo the swallow test tomorrow and her gastric study again in a couple of days. She will be back to normal drinking/eating in no time.

Wednesday Oct 29 2014

8:13 pm

Today was a crappy day. Very little progress, but more importantly no big set backs.

Laura got some sleep last night. Today she was light headed and dizzy anytime she was upright. They are working on medication changes and it should improve with time. This is not at all uncommon.

The dizziness did cause the first attempt of placing the feeding tube to be aborted. Nothing bad. She just started feeling light-headed when they had her waiting in a wheel chair for nearly a half hour in a waiting room. They brought her back to the room. She rested, sat up in a reclined position for a while and they wheeled her back down in a bed. This attempt was successful. The plan is to start slowly feeding her this evening and see how she handles food.

She has also been very low in energy. I am sure it doesn't help her last semi-meal was 6 days ago. I can see her energy diminishing each day. Her blood pressure is running low and that along with medications is causing the dizziness.

She has been feeling a little shortness of breathe when upright. Her oxygen is great and everything shows that her new lungs are still working great.

Pain and discomfort is becoming an issue. She still has a few chest tubes and they are starting to bother her causing back pain. Heat pads bring some relief and they just approved tramadol which should she uses for back pain at home.

She didn't get to walk today. Dizziness proved to be too problematic.

On a positive note, she will start getting nutrition tonight. They will redo the swallow study and gastric study in the next day or two, so there is a chance she will be back to normal food/drink soon. They have changed some medications that should help with pain and dizziness. And they resumed allowing her some thickened liquids again this afternoon.

Overall, her attitude is still great. In the grand scheme of this huge undertaking, she is doing great and has not had any major set backs. Everything that has occurred, we were prepared for through our orientation and education classes. I have also heard from so many people that have gone through this that have told me, a lot of these same things happened to them. Laura loves to know that.

It is great to hear from all of you. When Laura is feeling especially good, I have been reading her everyone's responses. She really appreciates it. It is the next best thing to getting visitors, which she still is not quite up to. So, please feel free to respond. I will read them to her. She especially likes to hear stories from other transplant folks. It is encourages her.

Thanks everyone. You are all really so supportive. We are hanging in there. This is the tough part. No one told us it would be easy. I can't wait to see her get up to speed.

Thursday Oct 30 2014

6:32 pm
Today was better. Laura was still having some low blood pressure issues in the morning, but she was doing much better this afternoon. She was sitting up most of the day and she really seemed to have more energy. They started giving her nutrition last night and it seems to help.

There were no studies done today. They want to hold off until Monday to redo the gastric emptying and swallow tests. It would be sooner, but they do not do those studies during the weekend.

She hadn't walked yet today, but she was raring to go when I left around 5pm. Nate (her brother) arrived today, and I bet that he will inspire a long spirited walk this evening. Maybe two walks.

A few details for those who do not know. Her surgery did not require the breaking of any ribs or the sternum. So, there are no broken ribs to deal with. She still has three chest tubes which are still draining enough to leave in, but one or more could be removed as soon as tomorrow. The goal is to have the all removed before the epidural is removed. The epidural will be removed either tomorrow, or let's hope not until Saturday. After it is removed they will switch to oral pain meds.

They will be ramping up her feeding to make sure she is tolerating food. When I left, they had swapped the food out for one with fewer carbs and had to start over at the low speed. Even that low amount is making a difference.

Small steps today, but all progress. We had some training today about how to handle some things when we get home. It is always good to hear they are starting to plan discharge. We are still at least 5 or 6 days out, but it is closer every day.

Also, on a lighter note. Laura was allowed a couple of stuffed animals (that represent some of our current/past cats). I had to sneek them home to wash them, bag them, and then bring them back. It was nice to surprise her.

I really feel the corner is turning. Still fighting low blood pressure, especially in the mornings, but it improving. The surgeons say it will just take time.

Saturday Nov 1 2014

11:55 am
Sorry for the delay. Yesterday the big news was that Nathan arrived from Michigan. Laura really perked up when he got here. She was a able to walk a little, but got dizzy after a lap. We checked and be bp was good, so the dizziness is a mystery. Could be medication related. Could be that she went directly from nap to walking in record time. Needs to be a more gradual change.

They were a little concerned that around Weds, her white blood cell count began to creep back up after it had been steadily declining since surgery. They did a CT scan and some blood cultures as well as some cultures from a bronchosocopy. So far the only bug showing up is her "super psuedomonas" which we all knew she would still have in her airways after surgery. This is a good thing since they already had a plan in place to battle that bug and they started her on inhaled colistin and a couple of ivr abx for that purpose. Her white blood cell count is starting to trend back down each day, so it doesn't appear to be any infection.

Laura had a frustrating evening. She was ready to walk again, but the hallway was off limits due to heavy duty cleaning. By the time it was available, she was feeling dizzy/nauseous so she was unable to get a second walk in. This is part of the frustration right now. Everyone is preaching "walk walk walk", but there doesn't seem to be any time to get them in. There is so much prep work involved with the ivr pole, chest tubes, catheters, feeding tubes, etc. And just when you think it is a good time to tackle the task, it is time for medicines, or a chest xray, and then Laura is exhausted again.

This morning they pulled the epidural. She had it for a little over a week, which is as long as they like to keep it in. Any more than that and there is an infection risk. Without it, the plan is to transition her to oral pain meds. At least that is what we thought, until a nurse informed us that the order had been canceled by the pain team and all she had available to her was tylenol and tramadol, when the original plan had been oxycodone. We are trying to get that straightened out.

Regardless, Laura still was motivated enough this morning to walk. She made one lap under pain. She has no epidural and 3 remaining chest tubes. They want her to walk more before removing any more chest tubes.

Things are moving slowly, as you can tell. No setbacks, but it is getting harder and harder to make progress. She is motivated, but frustrated.

7:59 pm
Laura has really been motivated today. She really gutted out a walk this morning after the epidural was removed and before alternative pain meds were given. The pain med snafu was resolved after a few hours, and she was finally given oral meds. She walked a couple of other time this afternoon. Each walk was stronger than the last. Her blood pressure and dizziness seems to be getting better.

She really pushed herself today. I was so impressed. Her exertion each walk, in my opinion, was like a re-hab session. How she was able to rest up and go at it again is unbelievable. This is the hardest thing I have ever seen anyone go through and she is facing it and just knocking it out of the park. The only thing that has held her back to this point has been the dizziness. Completely out of her control.

I was reminded this evening about how good Laura looks. It is easy for me to forget since I see her each day, that she in many ways looks incredible. Today we swapped out her hospital gown for some pink jammies. She is so much more mobile than you could imagine considering how soon it is since surgery.

Sunday Nov 2 2014

6:53 pm
Another good day. No low blood pressure issues. No dizziness (until a ride in the wheel chair for x-rays).  She seems to better on the new pain meds. She is much more mobile. Can walk on her own to the bathroom with help getting her chest tube basins moved and iv pole. She is much more chipper, excited and ready to rock and roll.

No news today on the white blood cell count. Not sure how that is holding out. She did get c. diff, so that was uncomfortable and is being treated. No chest tubes were removed today. The doctors keep preaching that she will need to walk more before things progress with the chest tubes, feeding, etc. Walking is considered the miracle drug.

Laura's walking is continuing to improve. Each walk, she is stronger than the last. She can go for several laps without even much of an increase in heart rate. Yes, the "pre-hab" is paying off.

She walked 3 laps early this morning. She followed that up with another walk of 5 laps in the early afternoon. This is a total of 2400 feet, or nearly a half mile. She was about to walk again when I left, and may try to get another in by the end of the day.  To compare, yesterday she walked 3 times for a TOTAL of 5 laps. She is on pace to triple that today. I hope that makes the doctors happy in the morning. I know I am impressed.

Tuesday Nov 4 2014

10:38 am
Overall, Laura is doing great. She is recovering more of her strength and attitude. She is kicking ass walking. She finished Sunday with a total of 12 laps (3600 feet), walked 20 laps yesterday (6000 feet, well over a mile) and has already completed 7 laps (2100 feet) before 9am this morning. She walks further and with more pace each time out.

They removed another chest tube yesterday. That leaves her with two. They are planning to remove another tomorrow.

She failed her gastric emptying study yesterday. This is not unusual after lung transplant. What this means is that they will place a G-J tube so we can continue tube feeding when she gets home. They say it will all just take time to everything working properly. With her activity level, it will not take too long.

Pain management has been good. She is resting comfortably, when she is left alone. She is napping now after that long walk this morning. Yesterday, she didn't even let a cleaning detail in the halls stop her. Instead she walked to another ward, did an additional lap there, and then back. All in all, it was over 1500 foot walk and a nice change of scenery.

Her white blood count is dropping nicely. No new bugs have shown up in cultures. She seems to be recovering well fro the c-diff. They did another bronch yesterday. No word on the cultures taken yet.

We are still looking at discharge by the end of the week. They are transitioning her to home medications where possible. She misses her kitties (and dorks, aka as dogs), and that motivation is driving her to walk walk walk. The doctors were pleased for the first time this morning with the number of laps she walked yesterday. 20 is their magic number. I doubt she stops at that distance today. 

Wednesday Nov 5

10:52 pm

The last 30 hours or so have been quite the roller coaster. Laura had 12 laps under her belt before the wheeled her away for G-J tube placement yesterday afternoon. The surgery knocked her back. She was very groggy and unsure on her feet when she returned. No more walking for the day. It was hard enough to maneuver around to the bathroom.

She had a scary night. There was a miscommunication after surgery and she was put on gravity drain on her G-tube, instead of suction. Well, this caused some drainage in the middle of the night from her J tube. This caused a huge mess and (almost literally) scared the shit out of Laura. The mistake was compounded by a doctor mentioning somewhat callously that perhaps there was problem with the placement of the tubes. By the time I got to the room, Laura was very stressed out. She was still feeling weak, tired and light-headed again from the surgery the day before. Things just seemed to spiral out of control emotionally, but somehow Laura gutted out three short walks throughout the morning and early afternoon. 

The doctors said that she was low on red blood cells, so she got a couple of transfusions. After the second one, she regained her strength, her light headedness was gone and she went on a long walk that match the distance of the previous 3 walks combined. That was around 8pm. I just got a message from her that she reached the impossible goal of 20 laps in a day. Incredible considering how the day began.

Highlights (or low-lights from Laura's perspective) from today include another broncoscopy, which the surgeon Gustavo, allowed me to look through the viewer to see Laura's lungs. I am happy to report that they are nice and pink with almost no secretions. I think he was showing them off to me.

Laura was due to have a follow up Fees study (swallow) today, but when she told the team that she wasn't at her best today, they postponed until tomorrow. I am sure she will be at her best tomorrow. I hope she passes for thin liquids. She has to be tired of the thickener we put in all her drinks.

Laura is feeling short of breathe today. The surgeon told her she is just feeling the effect of the surgery and she needs to trust the numbers. It is hard to retrain her brain to accept that she is getting enough oxygen, but she keeps her saturation pegged at 100 most of the day.

Tomorrow they plan to take one of the last two tubes out (we have heard this line a couple of times now), and they are also going to rerun the Fees test. They say that they are now looking at a Monday discharge. As long as the doctors are talking discharge, I couldn't care less what day they mention. A long recovery is not a bad outcome and this is nowhere close to what a long recovery can look like. 

Thursday Nov 6

9:50 pm 

Laura has had a good day. She started out strong this morning and was walking faster and farther than ever. The doctors did not remove a chest tube today. Again, the constant refrain is that one will be removed tomorrow. They are just being safe.

Speaking of being safe, she barely failed her swallow test for thin liquids. It was so close. But to err on the safe side, only thickened liquids for the time being.

Her attitude today was much improved. She is ready to get this part of the recovery over and get home.

Still looking a discharge early next week. 

Saturday Nov 8

10:31 am 

Laura has been steadily improving. She seems to be on pace for an early this week discharge. We haven't seen the surgeons since Thursday, so it is hard to get a more accurate picture

We have heard that the surgeons have been super busy. Laura's transplant was during a rush of 8 transplants in 9 days. That is only counting lung transplants. The pace is still crazy. We heard yesterday that they had two double-lung+heart transplants in 3 days Usually they only do one of those huge operations every 6 months. Laura has a good idea who those recipients are from her pre-hab sessions. Also, the fellow, Gustavo, that usually checks in on Laura each morning before the team, and does her bronchs, has been on lung procurement trips the last two days. That is why we did not see him yesterday until late. I hope it was not another dry run like the one Thursday was. When Gustavo came by in that afternoon he told us he had been in Michigan to get some lungs since we saw him in the morning, but they found the donor had lymphoma. Dry run.

Laura walked 22 laps Thursday and 25 laps yesterday including a marathon 10 lap session to start the day. 18 laps is a mile.

They were ready to pull one of her chest tubes yesterday, but found a small air leak. Nothing concerning, but they are keeping it in for now. The last chest tube is slowing down and should be ready to be pulled in a day or two. The removal of these chest tubes is the final hurdle she has left to clear before heading home.

Her tube feedings have improved and she is getting full nutrition now. They removed the drain from her G-J tube yesterday. She is no longer on any ivs other than her twice daily iv abx. Most of the day, the only things she is hooked up to are her feeding tube and the heart monitor (and chest tubes). When she goes home we will transition her to night feedings and she can disconnect during the day. It will be so nice to see her completely unconnected.

Laura did have an unrestful evening as they worked to unclot her picc line. This proved successful and they were not forced to place a new one.

All in all, things are getting better. I am sure she would say they are not getting "easier", but they are getting better each day.

Sunday Nov 9

3:10 pm 

The final two chest tubes were both removed today at 2:45pm. Everything is pointing to going home tomorrow. It will be a busy day with lots of training and education. I have never been so excited to learn something new.

Overall the progress has been good. More walking. She is having a reaction to one of her inhaled antibiotics. It causes her to be short of breathe, wheeze and even lose some of her voice. She noticed that it gets better after a few hours, so today she did the treatment early in the day hoping the afternoon would be better for walking. She also lobbied for an albuterol inhaler to use to help combat the shortness of breathe, and she got it.

Laura was so excited when the doctor came in and asked if she was ready to get the chest tubes out. Neither of us could believe it was really happening. She really wishes she was up to texting, but her head is still in that post-transplant haze that makes it hard to do tasks like that. Just know that she wants to share the news and I will relay any messages to her.

Monday Nov 10

4:46 pm
Half-way to the door. It seems like everyday we clear one hurtle and then find another. Last night, Laura started having stomach discomfort and they dialed back the feed tube rate. This morning they told us that they would like her at her goal rate for nutrition before going home. They changed formulas and restarted at a slower rate. They up it slightly every 8 hours and if all goes well, she may be at goal rate tomorrow. If she tolerates that, she is good to go home, unless another hurtle appears over the horizon.

They pulled the find two little bobble drains today and she had a bronch by our favorite Gustavo. Again, he let me view her lungs. Still looking great.

We had a talk with one of the respiratory therapists to help us understand the numbers from her PFTs (Pulmonary  Function Tests), and he said that all the numbers are well above the range they like to see after transplant. Very reassuring.

Also reassuring was Dr Hartwig this morning. Even though he did break the news about the tube feeds, he did say that everything else is looking great. Her lungs are holding up well without the chest tubes. She is ready to go home, if only she can get her digestion back in order to get proper nutrition.

She is having a very strong day. 2 walks of 10 laps each. More planned for later, although she has reached the 20 lap goal for the day.

Tuesday Nov 11

1:09 pm
It looks like today is the day we are going home. Laura has been tolerating her new feeding rate well. The doctors were all pleased with her progress and have given her the go-ahead to get out of here.

We have had lots of people come by to help educate us on home care. She is scheduled to have her final iv abx in the hospital at 4 (although it may be early) and then we should be ready to leave. We are also waiting for her first load of medications for home. Her printout for daily meds is several pages long.

Thanks for all of the support. I appreciate it and Laura does as well. We are more than ready for the next step on this journey.

Thursday Nov 13

5:08 pm
Laura got home Tuesday evening. That night was very hectic between learning tube feeds and setting up a crazy iv schedule for the night. We also had to take over the administering of all her medications. Well over 50 pills a day. Amazing how much we depended on the nurses to keep everything straight. It was really overwhelming. 

Wednesday things improved. We got her iv rx changed from a 3 hour infusion to a half-hour, which is the same as it had been since July. Same med, same schedule. Not sure how long she will stay on it, but it will be only a few more weeks.

We had out first appointment back in Durham on Weds. 10am we had an orientation for the post-transplant rehab. It went well. Laura did a 6 minute walk, some sitting exercises and a bike for another six minutes. She will begin rehab in earnest on Friday.

Today was clinic day. She had labs, blood draws, chest x-ray, and then followed by appointments with nutrition and her transplant doctor. Laura decided to walk into clinic from the car. That was some accomplishment. The appointments went well. We have a plan with nutrition to cut back from 24 hour feeds to 21 hours to give her a break during rehab each day. The doctor visit was even better. He approved her use of Narco for pain, discontinued the lasix, and told her she can start eating small amounts of food (pudding consistency) for pleasure. All of these were big victories for Laura, but none brightened her day as much as his impression of how good she is doing. He showed off her chest x-ray. Was gushing over her blood gases. Said she would not need to give any more nasty arterial blood draws. He was very impressed with her PFTs. All in all he was grinning from ear to ear and that made Laura's day.

Updates will be less frequent coming from me. I am hopeful that Laura will be up to taking over the task of blogging soon.

My Time

Will it be another weekend of catnaps?
Or, perhaps, something more exciting??

Y'all have no idea how crazy my life is right now. I mean, you have some idea if you are a reader of this blog or if we are close in real life. But even those closest to me do not get all the details of things I am exposed to every single day.

Rehab. I talk about it a lot. I complain about it a lot. I sing its praises. I dread it and I love it - we have a very complicated relationship, rehab and I. (smile) I have shared stories with some of you about people I've met there. I even wrote a post last month about about my rehab buddies.

Recently, for the purposes of my own mental health and sanity, I have tried to take a step back from some of rehab-ville so I can stay focused on myself. It has not made sad things any less sad or happy things any less happy, but it has allowed me to find a mental place where both focus and empathy can co-exist.

This was a very difficult week for me. I watched someone from rehab with whom I have a strong connection go on a very treacherous journey. But, and I feel kind of horrible saying this, it is partly because of the shock and sadness this week that I have now gotten to a place of such mental clarity. I had to see it, process it, talk about it, feel it, and then - as per my new tools for coping with life right now - set it aside in the proper mental compartment. This sadness will suck the life out of you if you let it. And as I wrote about in recalling last weekend's dry run and the subsequent follow-up post - I don't want to allow that to happen to me.

While my moods these days can change like the tides, I really hope I can hold this focus. Because for the first time in a while I am really and truly excited for the phone to ring. Despite the risks/possible complications/horrible stories I've heard, I know that I will have my own journey. We get our chance with new lungs, with new life, and this is my chance. This is my time! I feel empowered knowing that the things I bring to this are the elements for an extremely successful outcome.

"Whoo-hoo!"

Mijn Tweede Drooglopen (or, "My Second Dry Run" in a language that sounds cool)

Todd and I at The Pit, right after we received 'the call' after finishing lunch.
Cool as a cucumber? I don't think so!

After a bit of a drought of my own - with respect to blogging here the last couple of weeks - we had the thrilling experience of another dry run yesterday.

The whole thing went down very similarly to last time: got called on a Saturday afternoon, the timing was pretty good for us (napping vs just finishing a meal), the hospital was eerily still and empty, and we didn't end up being at the hospital for an incredibly long time. Both calls came, neatly, two days and roughly two months after being listed.

The Initial Work-Up

We were at the hospital for longer this time, and we did get a little further along in the work-up. When I got there I gave them a urine sample, changed into a gown, they did a bedside EKG, drew a ton of blood from my trusty port, swabbed my nose and went through my medications. I was running a very low-grade fever (which I wasn't aware of) but they weren't concerned about it.

After a while, someone working with the surgeon on call, who was Dr Davis, came to go through my medications again, ask me questions about how I had been feeling and have me sign the consent for surgery. The woman was very matter-of-fact-ish and kind of rubbed me the wrong way. But she was tolerable. At least she didn't dwell on the "you realize that lung transplant is the end of the road" part of the consent like the guy did last time.

Annoyed

All-in-all, I was not super thrilled/impressed/un-annoyed with the staff I came into contact with. Surely my attitude going in (being less than ideal for whatever reason) was part of the cause of my annoyance. Things definitely got started off on the wrong foot when the guy transporting me from check-in to my room gave us a 10-minute non-stop, repetitive, talking-to-himself-ish "tour" of all that we were seeing along the way with such pizzaz and articulation as "that spikey thing you see is the top of the Chapel...you can see that spikey part, that's part of Duke Chapel."

Lavender-scented stress ball...a good investment.

I was also rubbed the wrong way by a couple of the nurses who were very nice but who kept asking me questions and talking on top of one another regardless of whatever else was going on. They added chaos to my uneasiness. And, during what seemed like endless preparations for a shift change, one nurse seemed to be explaining the same obvious things to the other in a way that seemed both slightly condescending and/or control freakish. In fact, there was more than one moment when I found myself thinking, "y'all have done this before, right??"And the strange thing? I had BOTH of these nurses for my last dry run! Who knows. At least they were well-meaning. But the first nurse did not leave, poking her head in after about three previous goodbyes, without saying she would pray for this to be my day, which I thought was a little inappropriate.

More Prep

Anyway, more time elapsed. I was told to take off my insulin pump and they transitioned me to an insulin drip. I was also given my first dose of Prograf, for which mom and Todd had to mask up in addition to their gowns so as to not accidentally inhale any of its particles. The pill is emptied under your tongue and dissolves within a minute or so. Thankfully it is tasteless.

Eventually, a respiratory therapist (RT) came in to give me what my new nurse (whose grip on the English language was good enough to get her a job at Duke but not good enough to keep me from asking her over and over to repeat herself) called "albo" - albuterol, I finally realized - before two nebulized antibiotics. Why I had to request the RT to not lay out my assembled nebulizer cups (mouthpieces exposed!!) onto my very un-sterile bed sheets I will never know. Anyway, one of the antibiotics they gave me I have had before but no longer do because it was causing me brocho-spasm (Colistin) and the other I had not had (Amikacin - notorious for making people cough their brains out.) I did fine with both of them.

The pre-surgery checklist

Oh yes, I almost forgot one of the most annoying things! Before my breathing treatments, I wanted to try to clear myself out as much as possible - that is what I do at home with my therapy: vest with inhaled saline that makes me cough stuff up followed by other nebulized things that I want to stay down there and do their thing. This was per a suggestion by the surgeon I met in clinic last week named Dr Lin who suggested I do some good airway clearance before surgery to make lung removal less messy.

So I was huffing and coughing to get stuff out but there was one problem. My IV pump would start beeping every time I would cough really hard - we are talking really obnoxious, drive you crazy, insanely loud beeping. We finally figured out which button to push but seriously, how ridiculous is that? The cause was some kind of issue with back-pressure in my port when I coughed and the slowness of the IV drip. But again, why isn't this something that happens enough that they are familiar with it?

Finally Some News

We had arrived around 3:30. The only information I had about a time we might hear whether or not the surgery was "a go" was that the donor OR time was 7:30 pm. So we knew it would be at least that late, probably later. Just before 10 pm, the coordinator called to say it was a no-go. I thanked him for letting me finish my banana pudding after his initial call earlier and we were outta there about 20 minutes later, no worse for ware other than minus 15 or so vials of blood, feeling a little hungry and with the lingering sensations of Prograf in my mouth.

Here is me, feeling very un-zen even with all of the
Jedi mind-tricks I implored upon myself

The Mental Challenge

So that's the play-by-play. But I have said nothing about what was going on in my head. If I could give myself a grade for how I handled the first dry run I would give myself an A-. For this one? Probably a C. In other words, I was holding it together but my head was not where I wanted it to be despite my affirmations, meditation, breathing/stretching and come-to-Jesus talks with myself.

I cannot for the life of me figure out why...if I was superstitious I would say maybe it "meant" that it was not the right time for my transplant to happen. But that is not how I want to think about things with my Buddhism-with-a-twist-of-science spiritual beliefs. I was feeling a lot more scared and a lot less zen than I thought I would...I was not scared about whether or not I was doing the right thing, I was scared about the possible risks/complications/unforeseen things that may come from the surgery. If there are two things I have learned from all the transplant people I've met it is that every person's journey truly is unique. Also, the possibility for something unexpected happening is almost a guarantee - you can only hope that it is something that is easy to fix!

The last page of my favorite childhood book, The Fat Cat, shows a pretty spot-on depiction of what I will look like after transplant surgery, don'tcha think?

Basically, all of the stuff I cannot control I was having a hard time letting go of. I have known from the start of this process that this would be the most difficult mental part of this surgery, to relinquish control (at least for some time) of my care. With all of my dissecting and analyzing of this process, I still feel like it is never going to feel "natural" to do that. I am going to have to close my eyes and believe that the net will appear (thank you for the constant reminder of that, Erica Haney.)

I was also feeling sad off and on, for a reason I can't explain other than the fact that I was just over-run emotionally and that's the way it came out. But I didn't want to be sad going in for transplant. I didn't want to be sad or scared or hesitant. I want to be at peace - I believe that a peaceful mind puts your body in the best possible place for surgery; I believe that the mind has a tremendous amount of control over the body. But I just couldn't get myself there.

After a heart-to-heart with Todd, I did manage to get to a point of being at least okay with things - I would have been able to do it, and I think both Todd and I thought surgery was a very real possibility. But excited? Not so much. I can only hope that next time will be the time and that I will be able to bring my "A" game.

Rehab Buddies

Some of my rehab buddies and I!
from left: Celeste, Richard, me, Jason, Arlene, Richard, Beau

I have met some of the neatest people during what is now becoming my tenure at Duke's Cardiopulmonary Rehab. I especially like connecting with other cystics in person - the vast majority of my contact with CF people has been over the internet - which is kind of funny because I spent the first 20 or so years of my life mostly wanting to avoid them altogether!

It's interesting to meet people with other pulmonary diseases as well. (Idiopathic Pulmonary Fibrosis, Alpha-1 Antitrypsin Deficiency, Sarcoidosis, COPD, Black Lung Disease and Bronchiolitis Obliterans Syndrome, also known as end-stage lung rejection, encompasses most of them.) Since rehab has become such a big part of my life I thought I would dedicate a blog to telling you a little more about it. I have already written (somewhat unfondly) about the mental and physical challenges of rehab, so this will more about the people.

Sandra walking the indoor track

There are unique bonds that form in rehab - as is probably the case with any difficult situation into which people are thrust for any extent of time. Our struggles differ, yet we have much in common. In a way these relationships are transient but they will always be a permanent part of my mental transplant scrap book. I know some of these people will be lifelong friends.

There is a special bond with people whom with you share the same disease. I've met quite a few people with CF at various stages of pre- and post-surgery rehabilitation. I know it is hard for outsiders to understand why we can become so attached when there is so much loss and hardship in our community. All I can say is that for myself and many of the other cystics I've come across, it's all worth it.

A couple of super cystic women - Shawna

Here's a quick run down of some of the cystics I've gotten to know the best:

• two I have seen both before and after transplant
• three post-transplant Duke ECMO/life flighted/lives saved at the last minute miracle women
• two in situations similar to mine, pre-transplant (one listed, one still waiting to be listed)
• a woman who has been waiting 6 months for both lungs and a liver
• a guy my age who passed away before he was able to get himself in good enough shape to be listed
• a couple of others a bit before my time who I know less about but about whom I'd like to know more.

People come to Duke from all over! New York, Mississippi, Maine, New Jersey, North Dakota, Arizona and Virginia, Colorado, South Carolina, New Hampshire and overseas from Israel and Saudi Arabia!

So that is a snapshot of my rehab social life - hope you enjoyed it!