The Good Kind of Boring

Hello all!

Apologies for the gap in my writing. The truth is, I have been busy enjoying life - yay! And yes, things have even been a little too boring to write about - however, it's the good kind of boring. So I have cased my memory to come up with some of the more important things that have happened lately, health wise.

1. Bronchoscopy showed no rejection! My last bronchoscopy, almost two weeks ago, showed no rejection or infection. We were absolutely thrilled about that. However, I did still have the stenosis (or narrowing) in one of my airways that they had to dilate. I have to go back for them to recheck that this week. If it is there again they will probably want to put in a stent which is not a big deal but does involve general (instead of twilight) sedation like the bronchs.
   Update: I had my bronchoscopy today. The stenosis was back somewhat but it wasn't bad. They think I'm going to get away with not needing a stint which is great news.
2. The "wheeze" that I had going on for a while (and which I complained about a great deal) has been gone since the last time my lung was dilated. I hope this means the stenosis has not come back but that is only me being hopeful.  
3. My GI tract has recovered from my Nissen surgery a couple of months ago. I was having some issues eating (things getting "stuck" in my throat if I didn't chew well enough) and with extra gas after my surgery and that stuff has almost completely gone away. 
4. I feel myself getting short of breath less frequently as my muscles get stronger and my breathing continues to get better.
5. I might possibly have a hip thing going on. At my last transplant appointment I mentioned that my hips were cracking when I moved at certain times. I guess this can be a sign of something bad - some kind of weakening due to long term prednisone use. I'm not sure what they can do about it but I am having an MRI this week to investigate more closely.
   Update: my MRI showed nothing to be concerned about.

So what, exactly, do I spend my days doing?

As easy as it is to piddle around the house and do this or that or house work, things that always need to be done, I try to make it a point to be able to say a few actual things I've done during the day - vacuumed the house, brushed the dogs, swept the porch. I find that helps me to feel more productive and like my days aren't just slipping away.

Physically, I am still doing rehab twice per week (which includes both two kinds of cardio and a strength training class) and I am walking the dogs every day. I have been walking the dogs in the afternoon and I am going to have to get on a different schedule now that it is warming up - they get hot too easily. I am also looking forward to starting to do yoga again soon!

I am continuing to volunteer for all of my various organizations. The one that is the most consistent right now is the Triangle Land Conservancy. I have been going in there every Thursday for a few hours. So far I have edited a lot, helped them stuff envelopes and given feedback on some preserve signage they are working on. I will do whatever but they want me to do things that I enjoy so that's really nice.

Work with the Cystic Dreams Fund has been steady lately. It comes in waves but we just got about five new applications that I still need to review. We are also gearing up for our big annual event called Tea by the Sea. In addition to the tickets being a part of the fund raising, we have all kinds of auction items - many of them hand made or craft things donated by people with CF - up for bid. We hope to get a good crowd this year.

I have only written one story so far for the Lung Transplant Foundation (which focuses it's money on research for chronic rejection, currently incurable). I actually got paid a little bit for that story so I guess it's technically not all volunteering! I expect to be called upon to do another story in the coming month(s).

Lastly, my work with Donate Life NC is kind of at a standstill. I submitted a piece to them (my transplant story) and I am waiting for them to put it up on their website so that I will see how they shape it so I will better know how to frame my next interviews. I have both a friend whose sister was an organ donor and my transplant doctor waiting in the wings to write about.

Back to the home front, while I have gotten back in the groove of doing most kinds of house work, I am still not quite back into the cooking groove. I am getting there, and I am kind of forcing myself into it by starting to order from our produce delivery folks again, but I still have trouble finding the energy and/or motivation. I know I'll get there, it's just that in the mean time we are spending an awful lot of money eating out!

The State of Mental Health

Last week I was feeling a bit lost. I had all kinds of things to do but no motivation to do them. I was dreading every session of rehab. I was tired a lot. Was this some kind of post-transplant depression taking hold or something less serious?

I made an appointment with my shrink to sort things out - my shrink who I love and hadn't seen since I was in the hospital post-transplant!

Here is what it boils down to: I am in the midst of an incredible amount of change right now. I am trying to find my new normal, I am meeting new people and taking on new volunteer activities - all while trying to be mindful that I am still recovering from major surgery. That is a lot for anyone.

Then there is my energy: the thing is, I feel about 70%. Normal recovery for lung transplant is 6-12 months. If you chart the one year trajectory, I am way ahead of the pack. If you chart the 6-month path, I am still above the curve. So what I am feeling - the fatigue - is pretty much normal.

The other thing I discovered is that part of my hesitation is coming from the fact that it's just plain scary to put myself out there. I know I am a good writer but I am rusty since the last time I worked. I want to produce a good product and impress people with my work but I'm afraid that I'm not as good as I used to be. I know that my transplant medications have affected me mentally and I have a fear that will somehow translate to my writing or even how people perceive me. Ugh.

I know it's probably not true. My brain knows that but my heart doesn't yet. I think it's going to take just jumping in, trying my hand at things again. That's the only way to prove myself wrong. This week, I have my first chance to write a news story for the Lung Transplant Foundation. I hope that I do an awesome job and that they love me. If not, I will use it as a stepping stone. Either way I will learn something new.

Escaped The Rabbit Hole

It's been a hum-drum couple of weeks for me. Physically, I have recovered well from my Nissen surgery which is awesome. However, I had another issue come up during my latest bronchoscopy this past week. And through all of it, I've felt a bit down, not like my normal self. Let me do something that I rarely do and give you a play-by-play of the week.

Bad News Monday:

I had a regular old transplant clinic on Monday. Unfortunately it did not go well. My PFTs were down over 10%, which is an alarming amount in transplantville. Also, my x-ray showed an increase in size of a small fluid pocket that has been hanging around outside my lower right lung for a while. This is a sign that something is going on inside the lung.

My other "symptoms" as recorded in my medical book going in to the appointment were feeling "like I'm not doing as well/not breathing as deeply as I should be able to." The wheeze is still there, I report. And lastly, though I've been exercising a lot (walking especially), "I get short of breath on quick exertion."

Perhaps with all of this, plus the lower PFTs and the fluid thing, I should not have been surprised that my doctor suspected that I was still in rejection. There was talk of admitting me for 4 days of r-ATG (rabbit-ATG, an infusion of rabbit antibodies against human T-cells) in the hospital. r-ATG is the next step of rejection treatment when the steroid boost doesn't help. During this time I would likely experience a range of flu-like symptoms. Not fun, in other words.

We were anxious to see the results of the next day's bronch, but either way, the doc told me, we were likely looking at a hospital admission. But we had planned to go to the mountains for the weekend! No problem, doctor said I could hold off admission until Monday, so that was good at least.

Balloon Tuesday:

I arrive at Duke at 7:45 am for my bronch. I have a doctor I've never had before but I like her right away - she is quick-witted and seems to know exactly what's going on. Afterward she tells us that I have some severe stenosis (narrowing) in one of my mid-lobes on the right side. It was bad enough that she couldn't get the scope down through it. I would have to get this taken care of soon.

To do this, they go in with a balloon and expand the tissue. Often it is scar tissue which sometimes stays stretched or sometimes goes back to how it was. During my next bronch if it is narrowed again, they will consider going in surgically to place a stent. Supposedly this whole thing is not too uncommon.

The white part of the airway is scar tissue that is causing stenosis.

Now I am a novice at this stuff, but if you ask me, it is very suspicious that I have been having this wheeze for months (caused, they have told me, by pieces of scar tissue) on my right side and now I am having a problem with scar tissue having gotten so bad that it has narrowed my airway - also on the right side. Has the problem been creeping up this whole time? I have no way of knowing for sure. All I know is that I did have one or two bronchs while I've had the wheeze which showed no stenosis before now.

Good News Thursday:

I get the incredible news that I had no rejection from my bronch! YAY!! So super happy about that. Go body for accepting these new lungs!

I also find out the awesome news that because of the stenosis, the doctor has decided against the r-ATG for now, thinking that could be the cause of my lowered PFTs, but, I would have to be ballooned or dilated as soon as possible.

Side notes, on Thursday, I had coffee with the communications director of the Triangle Land Conservancy to talk about volunteer work. It went really well! They are excited to have me and I feel like I will be able to volunteer for them, Donate Life NC, the Lung Transplant Foundation and continue my work with the Cystic Dreams Fund all without overextending myself (I hope!)

That day, I also had an appointment with a new diabetes doctor. (Incidentally, I found out my hemoglobin A1C, a measure of diabetes control, was 5.8 - I was the best score of the day the doctor said!)

This visit was my second attempt to find a diabetes doctor at Duke with whom I would be happy. I liked the woman a lot, she was awesome, and her nursing assistant who I will be seeing I also liked. And so, happily but sadly, I take one more step away from ever going back to UNC. :(

Bronch #2 Friday:

Bronch with dilation. My second IV of the week and I miss having my port more and more. I actually asked about getting another one but the doctor posited that with the r-ATG treatment we thought was coming and the subsequent immune-suppression that it would be a bad idea.

My Friday ended with an incredibly long nap and then binge watching of the end of season 4 of The Wire.

Valentine's Day Hike Saturday:

The Raven Rock

Saturday's activities I am including just for fun because we did something really cool. I have wanted to go to Raven Rock State Park for a very long time - it is about an hour south of Raleigh. Unfortunately, the first part of that hour you have to navigate through about 100 stop lights of Raleigh suburbia, but after that it's nice.

We got to Raven Rock about 2pm - the weather was almost perfect, about 50 degrees and sunny, just cold enough with the wind to bundle up a little but not enough to feel cold. We hiked a 2.6 mile loop trail first to an overlook of the Cape Fear River which was pretty. Then, about the halfway point is the side trail to Raven Rock. It includes a very long set of stairs down from where you are on the bluff down to the river - 130 steps someone told me. We weren't sure if Sam and I would be able to make it back up but, what the hell, you can't go to Raven Rock and not see the Raven Rock, right?

My dorks and I at the Raven Rock

The dogs sneak a drink from melting ice off the rocks

It was super cool. You are surrounded by the river and then this huge rock jutting out of what seems to be nowhere. There were icicles hanging down and water dripping. Doc and Sam even got to eat a couple pieces of fallen ice.

We all made it up the stairs back to the trail! Todd was impressed with my climbing and we were both impressed with how well Sam did (Doc and Sam are nine and a half and Sam has doggie arthritis). The rest of the loop back to the car was a total bear. It seemed like one very long incline - some parts I was so tired I just wanted to give up! I did have to stop several times for a rest because I was just out of gas. When we finally made it back to the car I had the amazing feeling of having gotten a really good work-out.

And that wasn't all! We stopped in Lillington (this is an area known for its barbeque) for some take-out. We chose a place we thought was well known and got barbeque, beans, slaw and enough hush puppies to have a good snack on the way home. Everything was really good - especially the beans which had, deliciously, more sugar than any other baked beans I'd ever had.

Soft Rock Sunday:

Today is a completely lazy day. After I finish this, I am going to catch up on some TV, wait for my Sunday afternoon food delivery, maybe take the dogs for a walk if I can get up the momentum to seriously bundle up, wait for my mom to come over for a short visit.

Tonight we are very excited to be going to Soft Rock Sunday. This used to be a monthly occasion but hasn't happened for a while. It's an event that's DJ-ed by a friend of ours during which smooth rock 70s music is played. I love it - a lot of the songs I grew up with. A good time with friends and a good way to close a hectic week.

So I escaped the rabbit hole this week - but just barely. We won't know how successful the dilation was, and whether or not my PFTs have improved, until next month. Until then, I trudge onward.

Atlanta and Recovery

Art along the Beltline in Atlanta

I am long overdue for a post. Apologies to those who have been patiently waiting!

The last couple of weeks have been both routine (my new routine) and exceptional. I have gone to pulmonary rehab twice a week and have been taking care of business at home, continuing to keep up and get organized. Starting to think about our trip to Vegas at the end of April for our friends' wedding. (More on that as the time grows nearer.) And on the other side, I had a trip out of town and then my Nissen (stomach wrap) surgery.

Atlanta

My friend Erica, who recently moved to Atlanta,
and her awesome dog Berkley

Last weekend, I went to visit my good friend Erica in Atlanta. The drive was about 6 hours, longer than I would have liked, but it also gave me a lot of time to catch up on Podcasts (I finished "Serial" for those of you who know what I'm talking about, and I'm just as uncertain about who did it as I was after the first episode! Very curious what Serial #2 will be like.)

The visit was good. I got to spend a lot of quality time with Erica, who, new to Atlanta, is having a bit of a rough time adjusting to not having good friends around. We also got to explore a bit and sample some of Atlanta's neighborhood culture. (Think NYC with its 5 boroughs times three and squished down to fit into a much smaller city. Each neighborhood has its own heartbeat.)

On Saturday, after I arrived and had a nice cup of coffee out on the deck while my friend's housemate's chickens clucked around the outside of the house, we went to an awesome craft show (had to force myself not to buy a bunch of amazing bars of soap), walked around Little Five Points and then had dinner at a restaurant on the Beltline (a paved path that runs through several neighborhoods for jogging, biking, running, etc.).

On Sunday, after a quick detour to Marshall's, we went to this place called the Buford Highway Farmer's Market. I was thinking it was going to be a huge farmer's market but it was actually a gigantic multi-ethnic grocery store with about 20 check out lines bustling with every color of person.

Their selection was amazing, 50 different kinds of saki, rice by the 20-plus pound bag, every kind of frozen dumpling you could imagine, unidentifiable produce. Each isle was designated to a certain type of ethnic food - Chinese, Japanese, Korean, etc. - and the entire back wall of the store was a huge fish and meat counter area with every kind of fish and cut of meat imaginable (and including disgusting things like chicken feet and octopus.) We ended up getting some Sea Bass and, as an experiment, a piece of shark.

Chicken feet!

Every kind of rice vinegar you could ever want or imagine!

After the Farmer's Market we went to a Szechuan Chinese restaurant nearby called Gu's Bistro that my friend had heard about as having the best Chinese food (specifically dumplings) in the city. We split an order of each of their two kinds of dumplings and they were indeed spicy and delicious!

After that we took my friend's dog Berkley, who I love so much, for a long walk along the Beltline. It was a beautiful day out, about 50 and sunny, and there were tons of people out on their bikes, skateboards, roller blades, and walking and running. We probably walked over three miles. It was a lot for me. Then after a quick coffee break, we headed home and Erica with her Saki (and me with my NA beer) soon started cooking dinner. We had roasted curry cauliflower, the sea bass with a great fish rub and the shark...and let's just say the shark experiment ended up well for the two dogs. :)

After all of that it was an early night to bed for me. The next morning I got up and drove back to Raleigh. What a great time! And I didn't forget to take my pills one single time (this trip out of town was kind of the first experiment as to whether or not I could mix a fun weekend with remembering to take my pills and flush my stupid G/J tube - success!)

Surgery

My surgery was actually done with a robot - crazy, huh? -
that's quite a contrast to this picture!

The week after Atlanta was all about preparing for my surgery on Thursday. Things to do, special food to buy, exercise to get in. I prepared mentally by not thinking about it at all which does wonders for your nerves!

The morning of surgery I had to be at Duke at the ungodly hour of 5:20 am. Everything went fine. I got a full stomach wrap and while they were in there they also dilated the stomach opening to my small intestine to improve my stomach emptying.

My belly scars: 4 from chest tubes, 6 from Nissen surgery,
and one from my G/J feeding tube

Here were the things that were awesome about the surgery:

• I was really happy with how the anesthesia ended up this time - I told them less is more with me and the message clearly got through. I can remember things very soon after coming into the recovery area. This is in sharp contrast to the last procedure I had anesthesia, for my G/J stomach tube placement.
• I was able to burp after surgery! That may seem silly but a lot of people can't burp and end up with bloating from air build-up in their stomach.
• I was able to swallow pills after surgery - a lot of people have to crush big pills because they can't swallow them. 
• I did NOT have a lot of the nausea/vomiting/dry heaving that a lot of people have after this surgery.
• And the best thing was that I only had to stay in the hospital for one night! They gave me the option of staying another night but all they could offer me there that I couldn't get at home was IV anti-nausea medicine and I wasn't really having any nausea. So I figured if I could be in pain at the hospital I could be in pain at home and have the comforts of kitty cats and, well, home.

However, pain management - which hadn't been great at the hospital even with IV Dilaudid - was a huge issue as soon as I got home. The first day and night home after surgery ended up being extremely unpleasant - it hurt to do almost anything, even breath. All I could do that didn't hurt was lie in bed and sleep. The next morning I paged the on-call doctor and he changed me to a winning cocktail: He upped and increased the dosage of my pain meds and added in Tylenol and Advil intermittently (yes, I know Advil is a no-no after transplant but he said just one pill would be alright in this case.) I was much less miserable after that and was able to get up and do things, get food, catch up on Project Runway, etc.

So anyway, I am in recovery mode, and now that my pain is controlled I am already getting a little antsy - I have absolutely nothing planned for the next week or two which makes me sort of nuts - I'm even off from pulmonary rehab until I'm feeling strong. On the positive side, I have a lot of stuff to read right now (my travel books for our April trip and a book on social media for my new volunteer position - more on that in another post) to fill my time and maybe I will start watching a new show and catch up on old ones or something.

Also, I have found great ways of overcoming the dullness of my liquid diet - added herbs to chicken broth, fixing cream of wheat and eating rainbow sherbert. I am only on it until tomorrow and then I can start having soft foods - it is shades of my swallowing test days all over again. This time, however, I'm going to try not to cheat so much. :)

- L

What's Next?

I had just finished loading up my car with some stuff to take to the thrift store yesterday when a neighbor walked by with her dog and started to chat. She knows about my transplant and was asking how I was doing, if I was feeling stronger every day. I told her I was still doing rehab and, yes, getting stronger every day.

At that moment I felt something missing. What else am I doing that's worth while? What's next for myself?

Yes, I still need to take the time to do my rehab (physically, I still need to get stronger) and to make sure I'm giving my body plenty of rest. But then what? Part of me is ready to jump back into life! Although, admittedly, I'm not quite sure what that would look like right now.

The Complications aka The Trouble With Returning To Work

The problem with returning to work - even part time as I was working before - is that I would lose my federal disability. The disability that took me eight months to get approved for. Yeah. I am not taking that lightly. I got free help getting approved with a CF Foundation-sponsored lawyer the first time around but I don't know if that would be available to me again - and you need a lawyer to cut across the BS for this kind of thing.

I am allowed to work a little while still receiving federal disability, but it isn't much and it's "frowned upon" - I guess if you're disabled they want you to truly be sitting around not doing anything at all. (Well, of course with transplant it's different.)

Assuming I did not return to a paying job, I would ride out the rest of the two years left on my work long term disability (until Dec 2015) and keep my Aetna work insurance. At that point, there would be a gap I'd have to cover before the 2.5 year federal disability waiting period for Medicare would be up. So I would need to get Cobra or look for private insurance before my insurance would switch from Aetna to Medicare.

Any way you slice it, things ain't gonna be as easy insurance wise as they have been for me so far. (By the way, I received an "itemization of services" in the mail from Duke the other day. I have been saying all along that my transplant was free but I lied; out of about $555,000 of defined costs during transplant I end up owing $266. Not bad. And thank you, dog!)

Finding a Job That Fits

So what if I were to go back to work and lose my chance for Medicare after the time I would qualify for it? (In any scenario I keep my Aetna insurance until Dec. 2015.) For one I would need to find an employer who offered me insurance. This could be tricky because I do not see myself working beyond part time at this point. In addition to those reduced hours, I would need to find an employer who was understanding about me needing time off for doctor's appointments, health flare-ups, and who allowed flexibility to work from home when needed. The place also needs to be somewhere with not too many people and where I feel comfortable about people not coming in sick.

I'm not saying that would be impossible, just difficult.

The alternative is for me to find a place to volunteer on a regular basis - it would have to be a regular basis (i.e. job like) because already I can feel myself starting to go crazy not having something like that to do! Maybe I would go in a couple of days per week, possibly work from home some. Maybe even work for more than one place.

Now for the exciting part, thinking about what kind of work I would want to do!

Things I Can See Myself Doing (a bit of a brainstorm)

I'll bet this list will come as no surprise to any of you!

• Working with animals - while this is my first love, when it comes down to details it's not as neat as I wish it was. I always saw myself volunteering at Safe Haven for Cats (a really great no-kill shelter that I volunteered at long ago.) The problem with the "hands on" aspect of this is that I am not supposed to be around kitty litter. (It's one of THE big no-nos post-transplant because of a bacteria you can pick up.) Each kitty cage contains a litter box at Safe Haven, and, similarly, other places I assume. Also, I need to be super careful about cat scratches, so any strange cats could be iffy. So what about doing some kind of volunteer office work? Writing or website help? That would definitely be possible but, let's face it, it's far less fun when you can't be around the furry ones!
• Pet sitting - this is something I could do (cash under the table) for friends at first and maybe more as word-of-mouth spread. Again, no scooping kitty boxes so that would be limiting. Work would be sporadic and, probably the biggest problem, we want to start doing stuff on weekends and we like to travel (and want to travel as much as possible this year!)...all the times people would need me. 
• I could be more like a dog walker - someone who would check in on pets during the day, maybe even walk them. That would be good exercise! And checking in on kitties requires no kitty box scooping.
  
  
  
  
  
• Volunteering for an environmental organization - ah, my second love. I can see myself volunteering for an environmental organization. Again, I would love to offer my writing, website writing and design skills, organizing or any other help that didn't involve direct solicitation or too much other front-line work to either The Nature Conservancy or another local group. 
• Volunteering for another good, local organization whose cause I agree with. This gets more outside my comfort zone. Of course I love places like the women's shelter, but I'm not sure I would feel comfortable volunteering there.
• Becoming a Big Sister - this is something I've always thought about doing but never had the time to commit. I think it would be awesome to be a positive influence on a young person! I could maybe even stretch my brain and be able to help some with school work. :) The problem with this kind of work - any kind of work with kids - is that kids are germ factories! If they aren't sick they could be carrying something from one of their school mates. I can't avoid kids forever, but maybe this is something better left for after I'm not quite so immune compromised. 
• Nanny - Many of you know I nannied for years during college and for a couple of years afterward. I liked the work because of the families I worked for. This is something I could do again (again, for cash) but it would have to be the right situation. Again, there is the germ issue - I would not be able to work if the kid was sick. Ideally it would be a kid who was not also in daycare or school yet so not exposed to so many other germies.
  
  
  
• Lung Transplant Foundation/Donate Life NC - I've already reached out to Donate Life NC. They expressed interest in sharing my story, and I would like to offer them my help possibly as well. A lot of other post-transplant folks also become involved with the Lung Transplant Foundation, another great organization. I joke they are the post-transplant version of the CF Foundation because so many transplanted cystics raise money for them.
• I just looked on the City's website for volunteer opportunities and found a few other cool possibilities: Parks & Rec volunteer program, Recycling Block Leader (this has my name all over it!), and the Greenway Volunteer Program. More possibilities!

Photos: Universe of Possibilities, doklab.nl; Businessman, shutterstock.com; Work/Life Balance sign, lifeaftermaternityleave.com; Woman with Kitten Painting, tennysonlee.com; Dog Walker, thumbtack.com; Donate Life/Done Vida, donatelife.net.

The New Normal

There are many steps in recovering from a major surgery: the number of things you are hooked up to decreases, you get released from the hospital, slowly get strength back that was lost while sitting around in a hospital bed.

Also, in my case, there's been the small steps toward being able to eat normally again (still working on that), getting various tubes/stitches/staples removed (everything is gone except for my feeding tube) and completing 23 grueling sessions of pulmonary rehab in order to graduate - which I did the week before Christmas - yay!

Along the way, little slices of normal life start to insert themselves into the medical routine and they are oh so very welcome. Going out to dinner or a movie? Awesome! Putting up the Christmas tree? Hell yeah! A trip out shopping instead of buying on Amazon? What fun! (All of course done with my mask discretely in my pocket book ready to be deployed if need be.)

Are We There Yet?

Recently I have had some people ask me if things were getting back to normal. The answer to that is not straight forward. 'Normal' to me before surgery was days of fatigue, doing treatments and dragging myself to rehab. Rewind to a little over a year ago before I had to stop working and life consisted of mornings of drinking coffee and reading the paper while doing my therapy, going into work, coming home to do therapy and exercise, cooking dinner, watching some TV with Todd, doing my final treatment and going to bed. 

So what will life look like with no treatments and only having to remember my medication times throughout the day? (I am still getting used to that.) The answer is I have no idea and the possibilities are incredibly exciting to me!!

I would like to go back to mornings of reading the paper and drinking coffee before doing some kind of work (what that will look like, whether actually going into an office as a paid job, doing some freelance writing, volunteering somewhere or doing something else at home.)

Exercise will continue to be a big part of my life - I want to get back to being able to go on bike rides with Todd and go to yoga classes!! I might even finally be able to complete yoga teacher training like I had wanted to (not to teach but just to get deeper into the practice.)

I want to have an active social life again, going out with friends - I miss that! (Although I will have to continue to adapt to a basically alcohol-free lifestyle, regrettably.) I want to be able to go on trips out of town on the weekend at a moment's notice. I miss our mountain house so much I can't even tell you! And I miss going down to Todd's aunt's beach house at Holden Beach - it is so beautiful down there.

Speaking of Getting Away

Speaking of getting away, before any of that happens I want to plan a couple of trips. I want to go to Atlanta for a weekend to see my good friend who's moved down there. And I want to go to Cleveland to see my dad/step-mom and family - and hopefully my brother can also drive down from Michigan so I can see his family too (nephew Simon!!)

Todd and I are also starting to plan summer vacations. We have a friend's wedding in Vegas in April. We want to go to Montana sometime. And we are starting to think longer out (next year) about a trip to Belize or some place like that on one of Todd's brother's fishing trips. (That would require a lot of planning and preparation from an infectious disease standpoint but the docs have said that with enough advanced time it should be fine.) We also have good friends in Ireland that we would love to visit. So much to do!

So what am I waiting for? That's easy - two things: I'm waiting for my rejection (discovered during my bronch a month ago and subsequently treated with a large blast of steroids) to clear and for my Nissen stomach wrap surgery to be done. For the rejection, I had a follow-up bronch on Monday and I am awaiting the results. If I remember I will update this with them. If I am clear, plans will start being made! [Update: I am still showing mild rejection, although less than last time - this makes sense because my Prograf (my main anti-rejection medication) levels have still been low. My treatment will again be I the steroid treatment. This is also good, in my opinion, because it means they didn't think an escalated type of treatment was necessary.]

For the Nissen, I am supposed to get a consult with the surgeon soon and I am hoping that surgery will follow fairly quickly. The recovery from the Nissen seems to vary a lot between patients. Although the surgery is done laparoscopically, I am hoping that the pain will be lessened by the fact that my chest is still numb from the belly button up to my collar bone.

Anyway, that's the deal with me right now. I am awaiting the endless possibilities of what my new normal could be.

Oh, and I almost forgot: Happy New Year y'all!

 

Photo Credit: Egg @ doctor, www.andertoons.com; Amazon boxes, www.techlicious.com; Yoga hands, www.yogavibetenerife.com; Belize, www.belizethisway.com.

A Look Into the Inner Feelings of Transplant

I know it's self imposed, but there are a lot of "should" feelings associated with transplant. Beforehand, I should be downtrodden but also miraculously remain optimistic! During, I should struggle but think about the positives of the future. And now, I should be eternally grateful.

I have felt all of those things, and I have also gotten caught up in the "shoulds" when I shouldn't have - after all, the journey is unique for everyone. As long as you are honest and true to yourself I don't think you can go wrong.

But here I wanted to give a bit of an insider's look at how I've felt throughout this process during the various stages. I've schooled you all enough on the brain of the pre-transplant stage, so I will skip straight to the day I got called.

 

Being Called for Transplant

As you may know, the day of the call that would turn out to be the actual call felt different than my previous two dry runs. There was an air of "this will happen today" as we waited to hear the news. Things went smoothly, there was no chaos or weird/incompetent nurses encountered. I even signed my concent at 10:23 am on 10/23/14!

I was feeling positive as I remember it (throughout all of this you will have to excuse my less than perfect memory, i.e. Todd will probably read this and have corrections *smiley face*). I was trying to put all of the scary/hard times ahead thoughts out of my mind and just know that I would handle one thing at a time. Right now I was handling the stress of the wait and that was enough.

So I was feeling positive all the way up to the point when the start of the donor operating room time got further away ... I was kind of thinking the longer it was from the start of the O.R. time, the less likely it was that the organs were good. I started to doubt that it was a go, but my team remained ever positive. What did I know!

Once we got the "go" I felt pretty good. I was very in the moment, very "let's do this." Being rolled away to the operating room wasn't at all terrifying like I'd once imagined it might be.

 

Waking up and the Early Days

I'm not going to lie - much of this time is a fuzzy blur. My first memory of waking up was lying in the ICU and two of Todd's aunts were sitting in there whispering about how good I looked, how good my color was. I remember the first time seeing Todd - he looked happier than I think I had ever seen him.

I don't remember too much about how I felt during this time. I'd say the drugs kept me feeling pretty happy for the most part. I wasn't in any pain, I didn't have much discomfort - I wasn't even fully aware of all the things that were sticking out of me yet! Things were pretty smooth except for my mouth being so so dry and me wanting water (but only being allowed mouth swabs) like never before.

Step Down

I was in ICU only a few dreamy days and then it was on to the harsh reality of step down. I say this not only because recovery become much harder but because we were moved from the cushy new Duke Medical Pavilion building to a small cramped floor in the old hospital - however, I was fortunate enough to get moved to one of the largest rooms on the floor after a few days which was nice.

Things are still foggy in the early days of step down. But after a little while, what I can only describe as "survival mode" kicked in. Immediate concerns trumped everything else: have pain (mostly from my back from the horrible bed), need pain medicine; have to pee, need to get to the bathroom with all my ten zillion tubes. Things like changing clothes, brushing teeth, washing hair...all those were luxuries saved for special occasions that required way too much energy. I was exhausted! And with the hospital's constant interruptions I was not getting adequate sleep.

I actually started to get a bit crazy from lack of sleep, unofficially diagnosed by my awesome shrink who came by to visit me a couple of times. Things did get better once I realized all the problems lack of sleep was causing (I can't remember specifics but I was basically mentally unraveling) and made it a priority by sneaking in naps whenever I could and trying to negotiate sleeping time with my nurses.

One of the more frustrating things for me was that I just wasn't feeling better! I truly thought, I went through all that for this?? I had so much chest and new-lung tightness in the first couple of weeks it was incredibly frustrating. It made not only my walking laps difficult but even things like getting to the bathroom would make me short of breath. Of course this was also because I had become de-conditioned from sitting around in a hospital bed. But knowing that didn't make it any better.

Also, the doctors kept telling me I was progressing well, which should have been great news, but instead frustrated me more because I felt I was having such a tough time. In my worst times, I felt imminently that my fate was in my own hands - that I would have to power upward with sheer mental faith and endurance or be left to wither away in the walls of 3100 (my hospital floor.) I have never felt more alone as I did then. It didn't matter that I had the most wonderful caregivers at my side or a team of hundreds pulling for me outside the hospital. All that mattered was could I get through another day knowing that if I did the next day would be better.

Walking

I have to dedicate an entire section to this because it was such a crucial thing in my step-down experience. Successful recovery was won and lost in the number of laps you were able to do each day - or so the surgeons would have you think!

Some days, walking laps in step down was the most difficult thing I have ever done. When your body is running on fumes (low iron, at first I had no food, low blood pressure, very high blood sugars, lack of sleep...) again you have to rely on that sheer mental will. There were many days like this. Many more than I found myself walking and thinking, "wow, these new lungs are awesome!" Though I did have those moments, like the first time I was able to walk and talk to either Todd or my brother (my faithful walking partners/pullers of the IV pole) without getting short of breath!

Which brings me to my next topic.

Gratitude

Am I grateful for this gift I have received? Abso-freakin'-lutely! I know that intellectually beyond a doubt. But have I had the chance to really feel that gratitude yet? Not really. Thoughts of "someone unselfishly saved my life" haven't really entered into my thinking yet. After all, there is a lot of stuff to deal with (as you've partly seen) when recovering from a major, life-changing surgery. Do I feel guilty about it? Sort of. I feel like I should be having these "I feel grateful" moments each day. But instead I am still focused each day on the task to accomplish (going to rehab, things that need to be done, appointments.) I know the gratitude will come more fully. It certainly came at Thanksgiving when I felt it very close to my heart.

As a side note, honestly, part of me is still in denial about how sick I was before transplant - in other words, how much did these organs really save my life? In my mind I was doing pretty darn well for someone with end-stage lung disease. But people around me could see me deteriorate more and more by the week. And while I may well have lived another year or more in those conditions, the threat of some kind of flu or other viral attack loomed always as a threat that could either knock me to below transplantable level or worse.

In Conclusion

In the end, transplant was the hardest thing I have ever done - by far. Getting home and having to manage tube feedings and all of my new medications and schedules is a close second. All of this was hard in so many ways, mentally, physically and emotionally. But has it been worth it? Has it been awesome to walk to my car with groceries and not get out of breath? To blow out my birthday candles like it was nothing? To have PFTs I haven't had since my early 20s? Abso-freakin'-lutely. And I know those accomplishments are only likely to grow!

I very much look forward to the six month mark when I am able to write my donor family a letter of appreciation and hope very much to hear back from them and learn about who my donor was and what the circumstances were of their passing.

And so I will leave you with this, which I found very appropriate:

Love you all,

L


Photo credits: Life is a Beautiful Struggle, uk.urbanest.com; Optimism, www.hdwallpapers.com; Drugged up Cow, www.gigwise.com; Success, www.happyherbivore.com; IV Cat, imgarcade.com; Elephant on Back, www.emmascrivner.net; Quotes, www.wishbowl.org.