New Family Member

I hate putting blurry shots on my blog but black cats are hard to photograph and this one does not like to stay still for long.

This week, we welcomed a new little girl named Maya into our house - a four-legged feline kind of girl.

A little over a year ago, we lost one of our kitties to cancer. She had been healthy her entire life and then rather quickly went downhill. It wasn't anything we were able to treat easily so we had to put her to sleep. For being the smallest cat in the house, she had the biggest personality - we have missed her very much.

One of my best pictures of Squeek

Pretty much since forever, or, more specifically the last few months, I have been wanting to get another cat. I wanted to volunteer with animals too, but it all seemed like a bad idea with my having to take precautions around animals. I go pretty regularly to our neighborhood thrift shop, Cause for Paws, which keeps a few cages of adoptable kittens around for viewing. I was tempted many times by the squeaking little fur balls.

The last time I went there, I visited a cage of three kittens. Two of them were solid black, one was a brown tabby. When we opened the cage door, the brown tabby came running straight out. I picked her up (this was the first time I had actually held one of the kittens I went to see) and all she wanted to do was lay in my arms and purr. She was so sweet, I think she was all of the employees' favorite. I was tempted by her, but I also felt bad for the black kittens knowing that black animals are not adopted as frequently. They gave me the adoption form but I knew that there were two other peoples' permissions I would need first - my doctor and then my husband.

Holding the thrift store kitten

I emailed my transplant coordinator that evening. I eagerly awaited her reply. Meanwhile I continued working on Todd. After all my joking around about getting another pet, I was finally starting to get my hopes up about a new kitty!! My coordinator finally wrote back after a couple of days. She said it was fine as long as I stayed away from the kitty litter (which can contain a dangerous bacteria) and kept the cat off the bed (a rule, I admit, which I have not been following since about three months out from transplant. I also kiss my kitties which I'm pretty sure would be against the rule too, but that's just the way I roll.)

When I finally got the go ahead, I had to make some decisions. What about the sweet tabby versus the black kittens? Or what about getting an even less adoptable full-grown cat? Or the least adoptable of all cats an adult black cat?? I felt that was what I had to do. So I started looking online and Maya caught my eye. Here is her story: she was found in a dumpster as a kitten before being taken to an animal shelter. She had been there as long as she could before they were going to euthanize her. The rescue group I got her from stepped in and she was fostered with one woman for seven months.

I filled out the adoption request form on Halloween night and we went to meet her the next day at PetSmart - the adoption group brings cats there for showing on the weekends. (Incidentally, Calvin's Paws, as it's called, is pretty awesome - they specialize in adoption of disabled, senior and special needs cats.)

"The kitten," as she's sometimes referred to, likes looking out the window (she's completely and indoor cat) and is always up for playing.

Maya was pretty relaxed for being in a crazy environment with so much going on. She even let me hold her. Her foster mom kept telling me how sweet of a kitty she was and she was so right. Other things that seemed good about Maya included that she was used to living with two big dogs (Newfoundlands!) so she would likely get along with our two goldens and that she lived with about 12 other (mostly foster) cats, some young, some old. Maya would play with the younger cats but leave the older ones alone - that's what I needed for my two older cats. She's about one year old (you never know for sure with rescue animals), so she still has some kitten in her, which definitely lightens up the house. Yet she seems to have all of the good manners of an adult cat.

It hasn't even been a week now and Maya is fully introduced to everyone in the house. All the pets are doing well. She is fine with the dogs unless they both come at her or get really excited (though she did mistake an excited tail for a play toy one time.) She doesn't bother my oldest, arthritic cat Diosa - although the two of them hissed the most at each other initially. My male cat seems pretty indifferent although he is acting a little sad I think.

Maya instantly feels comfortable jumping on Todd's lap

So yes, that's the story of Maya. Some surprising yet not surprising news. Not only has the house felt a missing spot since Squeek died, but with four older pets, it's nice to have some young blood around (our dogs are 10; cats 12 and 13). I think it's good for everyone. I know it's good for me.

This Is For You, Dad

Dad and I at Todd and I's commitment ceremony, 2009

It's been a year since I was transplanted. Holy cow! As much as I've been anticipating this day coming it still seems unreal.

I started out today wanting to write about some random "one year" things - what a tough wait it had been, how much I struggled; the difficulty of switching to a new center for transplant; and that I'd lost a cat and my father along this journey. But when I started writing about my dad, the words just kept coming, and I realized that I'd never really dedicated a blog entry just to him. So this is for you, dad.

Thankfully my father, Charles Nicholas Smith, was alive to see me transplanted and slowly coming back to life in the early months. Unfortunately he passed away in early May, about six months after I was transplanted. He was 65.

My father was always a very important person in my life. He had the knack of being able to always say the right thing at the right time when I was feeling down. He could pump me up - he was my cheerleader. But he was always genuine and his words and very rational opinions were always kept very close to my heart.

Dad with his first two grand babies, Maria and Elise

My father was very sick with end-stage emphysema for many years. We (the family) had taken advantage of so many "borrowed years" we expected he may not live through - but he just kept chugging along. He was often either increasing his steroids or starting on an antibiotic to feel better. We all knew the day would come when that was over, but when it finally happened that didn't make it any easier.

He spent the last three months of his life on the ventilator. They tried everything to get him off of it - he'd done it five times before! But nothing worked, he had too much anxiety breathing on his own, and his body started to wither away. It was an awful three months: every time the phone rang I'd think the worst.

I went up to Cleveland to see my dad in February or March, when things first got serious - what would become the beginning of the end. He had been admitted to the hospital because of pain from a pulled muscle in his side from coughing. However, being on a blood thinner ended up causing major internal bleeding, which started to push on his lung making it more difficult to breath. Since he was barely stable on a good breathing day, this led to an anxiety attack during which he had to be intubated.

When I visited, he was ventilated, partly sedated, and hardly with it. He squeezed my hand to show he knew I was there. He opened his eyes a little but not much. It was a hard way to walk away from someone you love, knowing that might be the final "goodbye."

Finally he was stable enough to leave the hospital (after dealing with kidney failure and a list of other things) for a rehabilitation center. The place he went to was known for being able to ween patients from the vent with their rigorous physical therapy (getting even the most bed-ridden patients up in a chair at least once a day) and respiratory therapists constantly dialing back the vent to see how the patient would do. If he was going to get off the vent, he would have been able to do it with these people.

A picture years ago before hitting the road from Cleveland back to NC - dad, me, and dog Lily

Weeks become months. The more time that passed, the less likely it was that dad was going to make it off the vent. He had been living purely with the assistance of a machine. He wouldn't have wanted that, and none of us wanted it for him once the opportunity for improvement was gone.

There was a day or so during which things like hospice were discussed. But no one thought he was strong enough to survive being transferred out of the facility, and besides there were very few options. And so, after all that time "waiting to see," it was rather quickly decided among the family that we would turn the vent off while keeping him comfortable. As difficult of a thing as this is to decide, when the time was there, we all knew it was what had to be done.

Todd and I packed and left for the 10-hour drive to Cleveland the next day - the day the vent would be turned off. I believe it happened around 9am. The staff had all come to say goodbye, and my step-mother, sister, brother and his wife were all there. I was getting text updates from my sister-in-law.

There wasn't much to report while we drove through North Carolina. Dad was relaxed and breathing on his own. His blood pressure was stable. Who knew how long this would last. He was intermittently waking up from the morphine they were giving him, but once he had more he was okay again. In Virginia, the updates started getting more serious. His blood pressure was dropping, slowly. His respirations were beginning to slow a bit. I told Todd it was time for him to start driving.

Dad and I in front of a hot spring at Yellowstone

My step-sister said that they were all happy to be there. But it was uncomprehendingly difficult. My step-mother was curled up beside my dad in his hospital bed. It seemed like the saddest, most pure expression of love one could give at that time. They were two going through a painful fracture to become one.

There was a little more up and down, but when I got the final word he had died about 1pm there was an incredible emptiness inside me, all around me really. I didn't know what to say or do. I wanted to cry but it seemed unreal. Did I wish I was there in person? Not especially, although I felt a little like I "should" have been. Did I have any doubt that dad had died in the most peaceful loving manner possible? Not a chance. What more can you ask?

We ended up being in Cleveland for a week. I held up through that time pretty well, but I'm sure it was because it hadn't sunk in yet. It was sad, so sad. But we were thankful, as I said, for all of the borrowed time that we'd had, and we were all glad he wasn't struggling to breath anymore.

During that week in Cleveland, I made it a point to do some "dad" things. We went to the art museum for an afternoon - my dad loved the art museum. And we went to see an Indians game - my dad LOVED the Indians (and we had the most fabulous seats). We ate in Little Italy, bought expensive bottles of wine and toasted to dad. He wouldn't have wanted it any other way.

And so life goes on. I wanted to share each transplant milestone with him. I wanted to tell him about my 100% oxygen saturations that seemed simply unbelievable. I wanted to tell him about my exercise progress, my climbing pulmonary functions. And today, more than anything, I wish he was here to celebrate with me.

So here's to you, dad. I know you would have been proud of me. I know you would have enjoyed all my milestones as much as the rest of us have, and that you would be proud of all the volunteer writing that I'm doing. Still, I wish you were here in person to give me a giddy phone call congratulating me. I will be thinking of you tonight when I raise a glass to all that's happened in the last year. And I will be thinking of the most important person who isn't here to celebrate with me.

My brother Nathan, me, my dad and step-mom Mary Ann

Giving Back, Or, My Volunteer Work

Every transplant recipient that I know has a tremendous appreciation for the donor gift they have received. It is the ultimate selfless gift. We also think about the donor family a lot - in some cases they are the ones who sign off on the organ donation, but all times they have lost someone they care about immensely. And how crazy it must feel to know that part of your loved one is being transported or even flown across the country and put inside another human being!

Another thing a lot of us feel is the desire to give back. When I first got well enough to want to do volunteer work after transplant, I was super excited to meet with the director of Donate Life North Carolina to see what I might be able to do for them. They have since used my story in multiple places including, most recently, in a press release talking about the Pope's visit to the US and how he has advocated for organ, eye and tissue donation. (I kinda felt like I made it big, being in a press release with the Pope and all!)

I also got involved early on with the Lung Transplant Foundation which funds research for lung rejection. Most transplantees will eventually go into rejection so this is a very important mission. And there is more need now that more people are getting lung transplants.

My connection to the Lung Transplant Foundation was because of a friend (also a CFer and double lung transplant recipient) who was doing their communications work. Unfortunately, she had to step down because her health declined. I haven't done any work for them since however I did help out with fundraising a bit: a group of my friends and I are going to their annual Casino Night! Should be fun. We had tickets last year, too, but I was kinda busy in the hospital recovering from transplant and all. :)

In addition to giving back to lung transplant people, I also wanted to find some work to give myself something meaningful to do. So in January, I started volunteering for the Triangle Land Conservancy, a land conservation organization much like the one I worked at for over five years before having to "retire" because of my health. The work there is great and it's very rewarding. I do a lot of the same things I did at my old job, which is neat. I work for them a few hours on Thursday afternoons and do a little from home sometimes. Here is a link to my most recent blog post for them.

I have forever wanted to get involved with an animal rescue group. (I love, love, LOVE animals! Example: I am currently editing this typing with one finger because I have a cat on my lap.) I tried hooking up with the local Golden Retriever Rescue group but they never got back to me. I may try again. I thought about doing something at the SPCA, but even though I assured my husband I could do some sort of office work he will not allow me to be near cats (especially kittens!!!)...probably a good idea because I have no self control and would want to adopt them all. And I always think about wanting to volunteer for Safe Haven for Cats but, again, the cat thing. (However, I did volunteer there years ago and managed to not adopt a single cat!)

The thing about being around cats (especially kittens...sigh) is that it's not really great after transplant. First of all I am forbidden from getting anywhere near kitty litter. Second of all I have to be very careful about cat scratches and bites - they could lead to bad infection.

So I wouldn't say volunteering for an animal rescue organization isn't going to happen, I am just on the lookout for something that will be a good fit. To tell you the truth, I have seem some opportunities that would work for me, but for some reason I'm intimidated to just plunge into this. It's like pre-first day of school nervousness almost. I need to get over that and just do it.

The other volunteer work that I do is for the Cystic Dreams Fund. We give grant assistance to people with cystic fibrosis. This really doesn't take up much time. Every month I am emailed the grant applications, I read them and then either approve or disapprove them. We have grown from a very small non-profit to a group that a lot of cystics have heard about and request assistance from. I wish our fundraising could keep up!

On the horizon: I might actually go back and start volunteering at my old job at The Nature Conservancy under the person who now has my old job (sounds weird but isn't; she's a good friend). I'm thinking that it would also be for just a few hours a week. The idea of this is not only that I miss my former co-workers but that I can kind of stay in the loop there in case some part-time work comes up that I would be a good fit for.

I would love to work there again one day, assuming my energy could hold up (which at this point it can't.) There is a lot I have forgotten in the almost two years since I left there. And honestly, it doesn't hurt staying on their radar. To an extent I have done this by staying in touch with my old bosses, but it would be even better getting face time around the office.

Lastly is something I am VERY excited about. One of my online CF friends has started an incredibly successful CF non-profit called Emily's Entourage. She put out a call for writers and I jumped at the chance! For this, I may be contributing an article or so a month. It's a cool chance to get back to my pre-transplant roots a little bit and help out a cause I was indebted to for 35 years.

I don't want to over-extend myself with all of this stuff, but I do need things to fill my time and give me a sense of accomplishment and, as I said before, to give me a way to give back.

Food Restrictions

The more I learn, the worse it gets.

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

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

Flower of the agave plant

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

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

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

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

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

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

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

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

Most bread, grain and cereal products are alright.

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

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

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

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

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

• 
  
  
  

An Eventful Week (or so)

Montana 2015

I wondered what would finally spur me to blog again. It's been many months and a lot has happened. My eventful week seemed like as good of a place as any to start.

Let me back up for a minute. My mom had knee replacement surgery on Aug. 11 (three, almost four weeks ago.) The surgery itself went great. She was up and walking the next day and out of the hospital after only two nights. After she was home there was a period of pretty intense "daughtering" as I called it. I stayed at her place through the weekend, then went twice a day, and finally once a day and even now I'm going every few days. I mention this not only as background to my eventful week but also to give you a sense of how busy I've been with this lately.

Between knee and hip surgery my mom says hip was definitely easier.

So Wednesday, a week and a half ago, in the middle of the night, my mom called and said she fell out of bed and was bleeding everywhere. It didn't sound quite serious enough for an ambulance so Todd and I headed over. When we got there, she was COVERED in blood and holding her head. Her night gown was drenched, there was blood on the bed, floor, towels. We knew right away we'd have to go to the ER.

Many hours later, we left the ER, mom with ten staples in her head. It was quite a gash, it turned out. And not only was getting the staples painful (and not so great to watch either!) but so were the numbing injections and the whole cleaning process. Not fun. Fortunately there was no other injury.

Luckily, the hospital where my mom got her surgery is close by.

Moving on to the next event: Two nights later, at 4 am again, I passed out in the bathroom from low blood sugar. Fortunately Todd heard me fall. He came in and tried talking to me but I became increasingly less responsive. My eyes were also dilated. I was sweating all over. When the paramedics got here my blood sugar was 20! (Normal range 80-120.)

It's very strange waking up in your bathroom with strangers leaning over you. The paramedics had me drink juice (a lot of juice) and eat a peanut butter sandwich. I've never had a harder time eating a sandwich - I had absolutely no saliva in my mouth from sweating so much. After I recovered a bit more, I got back into bed and was shaking pretty bad. My stomach also didn't feel that great (peanut butter and apple juice = bad combo).

While my hypoglycemia symptoms were classic, Todd didn't recognize them because this had never happened before.

I slept for a long time that night but basically felt fine when I woke up. While the incident itself happened because I had done two stupid things, given insulin too close to bedtime and without first checking my blood sugar, I'm not sure why I didn't wake up like I have every other time.

I began being super vigilant about checking my sugars, I was in touch with my diabetes doctor, but unfortunately this led to a very frustrating week of my blood sugars going low while at times not being able to feel it.

Next: About a week after my mom's fall out of bed we went back to her surgeon for her three week check-up. It turned out she had developed a blood clot in her leg after surgery so back to the ER we went to get her started on some anticoagulant. Fortunately they were also able to take the staples out of her head, which saved us a trip to the doctor's office the next day.

And finally: Like I said, I had been frustrated with low blood sugars since the night I passed out. Then on Friday, I woke up from a nap feeling like my sugar was once again low. I checked and it was down to 33 - that's getting pretty close to being scary low. What happened next that put it over the edge was that I started getting a little confused. Since I was home alone, I played it safe and called the paramedics.

Paramedics are awesome people!!

Fortunately, this time they came I was still fully conscious. They told me I needed to eat - I'd had enough juice and glucose pills to get my sugar up, I needed food that would keep it up. So they hung out, I ate, my sugar came up and everything was fine. I hate that I had to call them but I think I did the right thing. Low numbers are one thing, but getting to that confusion stage is another whole ballgame.

And that wraps up my exciting week! (Actually week-and-a-half.)

Since I last blogged, a lot has happened and I am not going to torture you all to go back and try to recount. The short version is this: Went to Vegas for a wedding in April and did an amazing side trip to Zion and Bryce Canyon National Parks; My dad passed away in early May after a long slow decline and very hard fight with emphysema; We made our annual pilgrimage to Montana in July and had lots of fun with Todd's brother, our nephew, and did some awesome hiking, fishing, and exploring by car; My 9-month bronch in Aug once again showed no rejection! My health is doing really well, but I am tired a lot and don't have as much energy as I wish I did. I'm told this is perfectly normal even 10 months out from transplant as I am now. I continue to struggle with when/if might be the right time to go back to work - I'm sure I'll be writing more on this later.

Hope to check in again with you all soon!

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