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!