My Two Favorite Dorks

My Two Favorite Dorks

Tuesday, October 28, 2014

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.

Sunday, October 19, 2014

Why I Blog



I started working on this post a while ago and this week - when I am feeling absolutely uninspired for anything interesting or positive to write about - is the perfect time to dust it off and finish it up.

I first started blogging in 2004 on a cf forum I used to frequent. I stayed with it fairly regularly but then in 2007, I started a blog called Green Sense to write about various environmental topics. Check out my first post! However, I found that the kind of fact-based, well-researched and argued posts I wanted to create were extremely time consuming. As such, I could never find the time (or never made the time) and the blog didn't last.

A couple of years later, I started another cf-centric blog called Highly Evolved Genetic Mutant. I kept that up for about a half of a year before it fizzled out - it's an easy thing to have happen with a blog! In December of that year, I lost a very good friend to cystic fibrosis. It made me want to not write about health stuff (part of why the aforementioned blog fizzled out) so I started another blog a few months later called Catboogie's Dream to write about yoga, soap making and other things - that blog was subsequently was renamed the L Word, what you are reading right now. The L Word has, because of life circumstances, now come back to being primarily health-centered. However that may not always be so!

As much as the idea of a health-centered blog makes me cringe (trust me, I know there are a lot of bad health blogs out there) I have been determined to keep my blog going in a way that is interesting to people with and without CF. I have many reasons why I blog and I thought it would be fun to share them with you.

  1. To keep my sanity - it makes me feel better and helps me to organize my thoughts. I have a logical, writer's brain - enough said.
  2. To keep people informed of what's going on - I am always forthcoming about my health issues and my blog is no different. However, I know that not everyone deals with hearing about other peoples' health problems the same way. It makes some people uncomfortable to ask me how I've been doing, but I know that they do care and want to know. Blogging is a way for people to have the information without having to ask me. Also, blogging allows people to follow what's going on with me so that I'm not repeating the same conversation (and let's face it, it's not the most uplifting of subjects to constantly rehash) over and over again when I see them.

    BUT, I never want my blog to read like a play-by-play. I try very hard to stay on a topic and do a lot of self-editing so that I am not telling all of the dirty details. That's right, there's even more fun going on in my life at a given time than you read about - imagine that!
  3. To stay in practice - I am first and foremost a writer. My brother was/is a writer, my dad was/is a writer - it clearly runs in the family. Since I left my job at the end of last year, I wanted to keep writing on a regular basis. My blog became part of my current "job" of keeping up my health and sanity.
  4. Because I enjoy it - I really like writing. It gives me a huge sense of accomplishment. There's something that happens during the writing of a good composition that is comparable to a runner's high: you work and work and then you just sail. The result? At the end of almost every blog post, I feel I am putting forth an informative, heart-felt contribution to the world - hopefully with some light-heartedness mixed in. It is always something I am proud to have written.

  5. For my community and for the spectators - A decade ago is when I first discovered the online CF community and started making friends. After having lived my life with very little one-on-one interaction with other cystics, it's safe to say that I really took to it and have never looked back!

    At that time - way before transplant was something I even thought about in any kind of a realistic way - I started following some peoples' blogs or stories online and that included people who were at various stages of the transplant process. It was fascinating to me in a way that was also completely terrifying. Looking back, I think it was a way that I could sort of begin to imagine what transplant might look like for myself but viewed from the comfort of my life with high pulmonary function.

    Now that I am to the point of transplant, I want to be informative not only to my family, friends and fellow cystics but also to people I don't even know. To have a moment where someone on the other end of the internet says something that totally resonates with you is a very profound thing. I hope my experience can in some way be helpful to others.

Addendum: What Makes a Good Blog?

Since I've been thinking about why I blog and that I think my blog's pretty good, naturally a list began to form in my head of what kind of things make a good blog. Here's what I came up with:
  • Practice - read a lot of other blogs and be willing to accept feedback/constructive criticism
  • High standards - write, rewrite and edited
  • Visual appeal - spend time finding the right photos for each post; break text down into manageable sized paragraphs
  • Regular updating - often but not too often
  • Speak from the heart, avoid cliches - make it personal but not too personal; do not post anything too impulsively that you may regret
  • Leave others out - not everyone around you wants to be in your blog (doctors, for example); be respectful and use trash talking only when absolutely necessary
  • Know your audience - in my case, I have to balance my medical jargon for both CF and non-CF people
  • Write about something people care about - a good topic will often be something that people can relate to even though it pertains to your very specific situation (If you want to tell people what you had for breakfast, lunch, and dinner, use facebook.)


Photos: Nothing to Say, paintermommy.com; Chickens, savagechickens.com; Dogs, thepathlesstaken7.blogspot.com; Dog Blogging, wronghands1.wordpress.com; Snake Blogging, cartoonstock.com; Still Going to Ignore You, lizhover.com.

Saturday, October 11, 2014

Frustrated and a Little Freaked Out


CF has been kicking my ass...
I feel like I've been quiet lately. Even though (or maybe because?) I've been going through a lot I have chosen to make my last two blog posts more lighthearted. In contrast to those, this one will not be.

Let's start with the obvious. Todd and I never ever ever thought I would be waiting over three months for a transplant! I don't feel like summer "flew by" - I feel like summer didn't even happen, like I have been living - nay, stuck - in a suspended, shitty reality for months. I am so ready to get on with my life.

I am tired of being up and down all the time. When I am down, sometimes it feels like transplant may never happen. I have for the first time had this thought cross my mind - what if, what if, what if? I can't help but to think these things. I have seen now at least a dozen people with CF at different stages of the transplant process at Duke and I see the trends: about half the people make it to transplant okay, the other half will basically be doing okay and then fall off a cliff. (In medical terms this means they end up either intubated or on ECMO. In either case, your lung score goes way up and lungs usually become available within a few days.) Fortunately Duke is really good at dealing with these situations, but the point is I don't want to have to get to that point in order to get my transplant. That is one of the reasons why I continue to work and fight so hard to maintain my health. But as things are it remains that I need to either get lucky or sicker to get called.


I have so far been lucky in being able to maintain my health with exercise, therapy, antibiotics and other medications, but I feel like my luck may be starting to run out. I'm not trying to be dramatic. Let me explain. About a month ago, I started not being able to do quite as much at rehab...it wasn't anything major, just fewer of my awesome walking days or not being able to do as many reps with my strength training. I thought maybe I was getting burned out mentally - which I think was definitely part of what was going on - as well as physically. Or had I just hit "the wall" - the point at which my muscle capacity could no longer increase given the oxygenation my lungs were capable of providing? Or perhaps both?

To address the mental burn-out, I have gone the last few weeks cutting back to 3-4 days/week at rehab instead of 5. That helped some. But just when I had a new schedule for myself worked out that added some much needed variety to my exercise routine, rehab started cracking down on what used to be a very loose time frame: I am having to get done in 2 hours what used to take me 3. So I am not getting as much done every day as I want, which also makes me feel like I am missing out/losing ground/not progressing like I want.


The other thing going on here is that my IV antibiotic schedule is TOTALLY kicking my ass. And while I was under the impression that this was going to be only for 2 weeks, I found out it has been ordered for another 10 days! I am not getting enough sleep at night because I can't sleep in as much as I want to in order to get to rehab - and if I don't get to rehab on time I get even less accomplished than I want! I am up until 1:30 am at least every night doing IVs, then up at 8:30 to start an IV, then at 9:00 to switch IVs; or, really, I need to be getting out of bed by then but that's very difficult.

I feel buried in a hole I cannot see out of. I need guidance! I need to feel like I'm doing the right things. I need reassurance that I'm doing all that I can. And that is something I am most definitely not getting from Duke - I feel like I have been left to fend for myself right now. I need my previous CF doctor, Dr Coakley!! I have been in touch with him, by the way, and depending on how things go with Duke I may actually try to go see him soon. He is my ace in the hole.

So, What Else Is New?

Physically I am not doing great. I have had a major allergic/asthmatic coughing issue crop up the last week or so. Maybe it means that the IVs are helping me cough up crap, but I am coughing so much and so prolifically -  sometimes I just can't stop - it's ridiculous! I'm coughing while I'm trying to fall asleep, during the night, and I'm averaging about one super coughing fit per evening with plenty of little ones mixed in. Fall is my bad time of year for allergies and since I am no longer on allergy shots I think that is making things worse. But it's anybody's guess! This is another unanswered question I have hanging around out there right now.

In addition to coughing, my energy is down, I am more short of breath than usual and I am also having some other odd symptoms. I mentioned before about getting lightheaded when I cough. I have discovered that it only happens when I am sitting down! - which makes no sense to me whatsoever. I have headaches sometimes, but not clearly either sinus or CO2 related (probably a mix of both), muscle twitches in my legs (possibly from low potassium) and bad lower back pain. The latest thing is that I have gotten "the shakes" sometimes during the last couple of days. Oh, and my ankle randomly got puffy this week (better now thankfully.)

Basically there are a lot of different things going on with me right now and it's hard to decipher the role of each individual ailment: allergic coughing, infection flare-up, general CF progression, I ran out of one of one of my inhalers, I am exercising less, I'm not getting good sleep, I am emotionally up and down. It all creates a giant negative feedback loop that I desperately want out of.

Now, if you think that all of this sounds very negative, let me put it into perspective for you. Even with all that's going on, there are a hundred things I am thankful for - and I'm not talking wishy-washy thankful but rather things I have seen and could very realistically have happened or happen to me: I have not had a lung collapse, a serious lung bleed, a non-CF related health emergency, my port is still working well, I have not caught any viruses since I've been listed, my kidneys are doing well, my diabetes is in good control, somehow with all my coughing I have not reinjured my rib that was fractured (for more on that see entries here from July 31st forward), I am able to drive myself around, I am still able to socialize and have a pretty good quality of life, I can still do a lot at rehab (walk a mile in 20 mins) even though it's diminished, I have not had to be hospitalized because of infection, I have my money from disability coming in, Todd's job has been really awesome about giving him flexibility, I have wonderful insurance and, of course, I am surrounded by wonderful people - and pets - who inspire me every day to keep going. THIS is the context into which all the "bad" things in my life fit.

So what am I going to do about all this frustrating stuff?

Well, first, my coordinator will be back on Monday and I am going to call her and have a long chat about my current concerns. If I feel Duke is not able to help in the way I need it, I will consider going back to check in with my UNC doctor. I am also going to have a talk with the head woman at rehab and let her know what's going on with my IVs and energy level, tell her I've been frustrated with my progress and see what she has to say about it. At the very least I know I will feel better having all that stuff out in the open.

As for Todd and I, we continue to try to live as normally as possible, which means making plans as we usually would (and hoping we will have to cancel them!) We went to a dinner and a movie this week, went to trivia with friends (and won!) on Thursday and went to opening night for hockey last night (I am not sure how I had the energy for that - I was definitely waning.)

Last But Not Least, Happy Stuff!

It has not been all hum drum around here. I do have days where I feel good and my energy is good, and I have gotten some things done I have been wanting to do for a while.

For instance, for the first time since I have had my iPod, I finally - finally - after many hours in iTunes got things organized just the way I want them. Huge success! I now have all of the artists arranged the way I want and I have added mellow music to help me into a calm state of mind if need be. I also made various play lists with stuff from chill rock mixes to meditation sounds.


We have continued to keep the house in pretty much tip-top shape (well, minus the pet fur...we are still not great about vacuuming.) Things are organized, neat, ready to get that call (or for those snapshots of life with CF)! I changed over my summer to winter clothes this week and now have two more bags of stuff to take to the thrift store. I went through my clothes with two criteria: do I wear this? do I love this? If not, into the pile it went.

Also, we redid our main bathroom earlier this year, but since then (and because we are not going to have money any time soon to redo our master bathroom) I have wanted to do a few things to spruce things up in there. I have pined for months online for these amazing hand-forged recycled steel bathroom hardware fixtures. I was on the Gaiam website earlier this week and discovered they were now all 50% off - I was thrilled! So I will be installing those soon, as well as rearranging a couple of pictures we have hanging in our bathroom, one with a new frame. It's going to make the room feel very nice.



photo credit: Butt kicking, zipline.wordpress.com; Clover, layoutsparks.com; Man pushing boulder, petemandik.blogspot.com; Kitten with ear phones, sodahead.com

Saturday, October 4, 2014

Snapshot



I had another blog planned out for the day but I was just sitting here thinking, I wonder what it would look like to walk around the house and take pictures of what my life looks like right now. I tried to leave things as close to how they already were as possible - so it ain't all gonna be pretty folks. Here goes!

My throne! Nice of Todd to relinquish it to me. :) Notice water bottle and hand sanitizer in close reach.


A tank (and carrier) for every occasion!

Brownie love...these represent not only what my awesome friends are doing for me (thank you Sandy!) but also that I am eating lots of junk food these days under the guise of wanting to gain weight for surgery.

Our NA beers of choice, respectively.

Protein shakes! I drink one a day.

The constant motor loudness from the oxygen concentrator is something we've learned to live with.

Sigh...this represents things I am missing out on. Todd has been downtown listening to bluegrass music without me the last five days.

This represents the extra time (and inclination) I've had to purge and organize our house. Before, the bunny stuff was all kept here.

It's all bath or all sink bath for me! This cup is for washing my hair.

Magazines waiting for Aunt Jane! She and Aunt Martha are planning to come up for my surgery and to help out afterward.

The ugly box of IV supplies in the corner of my office...at least I have it confined to one box! That is no easy feat.

My secondary transplant bag - things to bring once I'm in step down - wonderfully soft sheets (thank you Sheila!!), my diabetes pump supplies and pajamas.

Never enough pillows for sleeping these days! And of course I had to include a cat in one of these pictures.

My night time ritual

Sinus rinses...every day.

One of several shelves of pills.

Counter top stuff: on the left, my next two IV doses warming up, a big bottle of (the most amazing in the entire world, EO lavender-scented) hand sanitizer, my current antibiotics and pain meds.

Recycling says, "Todd, please take me out to the big recycle bin so we can be with our friends!" (Note protein shakes and Starbucks cups.)

An empty calendar, just for drama. No plans!!!