A Bunch of Little Things

In celebration of the 10th anniversary of the Hurricanes winning the Stanley Cup, a bunch of the old team members came back!!

I've had a bunch of little things going on with my health lately. And a bunch of stuff in my personal life, too. Nothing too terrible. But small and annoying things. And so I am going to allow myself to do something I don't do very often - complain.

While the cold I last blogged about did go away without me needing antibiotics for the first time in forever, it did take weeks for me to get over the post-nasal drip and associated cough. But it's over now.

I had a bad migraine overnight Tuesday night to Wednesday morning. My one weapon against it, Tylenol, didn't do much good. I never used to get migraines, but now I seem to get them every few weeks or so. I've brought it up to the doctor but he doesn't know why. I guess it's bearable for now but if it gets worse I will have to do something about it.

In my last blog, I wrote about how my kidney numbers had gone up so my doctor took me off and changed a bunch of things with my meds. (One of those meds I was switched to, a rare inhaled antibiotic, I still haven't been able to get all the supplies I need after many dealings with pharmacies, specialty pharmacies, and my old oxygen company which had to arrange for a special compressor for it.) Anyway, one of the meds they reduced for me was an anti-viral medicine to control CMV, a virus which I have been culturing at low levels in my blood. So then what happened? The CMV came back at a level high enough for them to want to treat me for it. I narrowly escaped having to get a PICC line for this on Thursday by suggesting that we go back to my old regimen and see how my kidneys handle it. So we are going to try that first. Fingers crossed because I've heard it can take months for the virus to clear up on IVs.

Also on Thursday the cat accidentally scratched me. I let my coordinator know because I know that can be a concern and I wasn't sure what the protocol was for that. So now I am on two oral antibiotics for two weeks - one three times a day, the other twice a day. These also put strain on your kidneys, so in addition to my 64 ounces of water per day I consume, I have to try to drink even more. I have also cut back to one cup of coffee and no alcohol to reduce dehydration.

Smurf blue pills to prevent cat scratch fever

I am also having an ongoing problem with either my hamstring or IT band in my right leg. I might be prone to this kind of injury because of all the medications that I'm on. Also, my low back pain is a persistent problem for which I am taking a muscle relaxer and pain meds on a fairly regular basis. I really need to go to physical therapy but I've just not been up for the commitment. I have, however, started to get a bit more exercise, which is both good and irritating for my back. I've stepped up my cardio to three times per week (in addition to my dog walking) and I am going to try to find a yoga studio to go to (they are so expensive!!)

It feels lately like it's always something.

On a personal level it also wasn't the best week either. Todd got a cold so I was busy trying to avoid germs. My cat got a bite or something from another cat outdoors and had to be taken to the vet. Our heat went out and the repair wasn't cheap. And I found out that one of the women I have been volunteering for and with whom I have an awesome working relationship is leaving for another job.

On a positive note, I have made good progress with getting some big projects done around the house and that feels good. Our attic is cleaned out, organized and has been better insulated! It was a huge project. I got my iPad working correctly and synced with my phone and computer and I have been using it a lot. Also very exciting: we bought our plane tickets to go to Europe this summer! We will be flying to Germany to see my brother, who is there for five months while his wife does a teaching exchange, and then to Ireland to see Todd's very good longtime friends who moved there a couple of years ago.

Attic treasures...Sega Genesis anyone??

I guess that's it.

~ L

My First Normal Person Cold!

Our new cat Maya (aka "Kitten")

I have had lots of ideas - new year thoughts, writing my donor letter, resurgence of soap making, losing a beloved cat and the shenanigans of our newest feline family member - but I have been slack about writing. I'm sorry! Although I am tempted to do one of the "update" blogs that I so despise, I am going to resist and instead talk about my first real person cold last week! (I will mix in some catch-up pictures instead.)

Monday morning I woke up feeling awful: sore throat, productive cough, swollen glands, and a bad headache. Fortunately, I had no fever and my mucus was nothing but clear. I can't tell you how strange it is to have a cold with normal people's mucus! Every time I coughed I swore it was going to be a big gross blob, but it wasn't! So weird.

We went to Michigan for Christmas. Here, Simon reluctantly poses for a photo.

Todd was concerned and thought I should call my coordinator. Duke being Duke, they wanted me to get a slew of tests to rule out strep, flu, and to check my white blood cells and other blood work. I dragged my ass out of bed and Todd took me to Duke Hospital in Raleigh. I was coughing uncontrollably - that devilish tickling in your throat - in the lab waiting room. It reminded me of the bad old days of suppressing coughs in public.

After the Duke excursion, I went home and went back to bed. I can't remember what else I did, but it probably involved binge watching Nurse Jackie.

I have been cooking at home more and eating better because of a meal ingredient delivery service I started using. This Italian meatloaf turned out really well!

One thing that kind of sucks about transplant - besides being dragged out of bed for proactive tests when all you want to do is lay around in your pajamas - is that you aren't allowed to use any of the traditional "cold and flu" remedies. You are stuck with Tylenol and Guaifenesen. It's hard to find, but Guaifenesen in liquid form does exist - it's like a stripped down version of Robitussen. After that, you are relying on what feel like old-fashioned home remedies like cough drops, hot showers, hot tea (no honey!), getting lots of sleep, and good old sweet time. It's very primitive for someone who has undergone such a complicated life-saving surgery.

The good news about my labs was that I was negative for flu and strep. The bad news was that my kidney functions were not good - my creatinine had spiked way up to 3.0! Because of this, several medication changes were made. They told me that drinking 64 oz water/day was mandatory, and more fluids beside that, if possible. I've developed a system for that and I've really tried to lay off dehydrating beverages.

Soap making is picking up again! 808 Soap has a new client opening a salon and she wants to sell our bars. Here are some sample size hearts we made her for Valentine's Day.

As a side note, all of this was happening during my COBRA transition period - a time during which I am technically covered (but only retroactively) but sort of not covered. Fortunately with many phone calls I was able to straighten everything out and the insurance ship is now sailing smoothly.

A short regression: Somewhere in the middle of all of the calls and emails with my coordinator, tracking all of the medical changes that were going on, and getting procedures done, something occurred to me: I am damn good at being a patient. I know, who cares, right? And - here's the weird thing - I actually kind of miss it sometimes. I know that sounds crazy, but it's what I've known all my life. Doctors, clinics, labs, medication changes...it became so much a part of my life before transplant that in some ways it's actually difficult to leave behind.

Don't get me wrong, there is a LOT that I don't miss - the hours of treatments, the weeks of IVs, the days I felt like crap. Good riddance to all of that! But there is a human connection and special kind of attention one gets with doctors, nurses, lab technicians, even fellow patients, that I miss. In ways I feel totally disconnected from my old CF community - because once you get new lungs, you have "transplant," not CF. This could be another whole blog but I will stop there.

Anyway, fortunately this cold turned out not to be anything serious. I'm very grateful for that. (I also live with that whole "when is the next shoe going to drop" feeling in the back of my head. Could this be the beginning of my downturn??) And in a way, I'm glad to have it behind me because I always felt it looming in the background, and I had some idea of it being really really terrible to go through a viral flare-up with a suppressed immune system. But it wasn't! It was just as miserable as a normal person gets. Hooray for normal!!

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.

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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!