My Pearls of Transplant Wisdom

Living Life! Loving the living trees!
Sequoia National Forest in California, Summer 2017

I met a new transplant friend this week, a fellow cystic and transplantee from Duke about nine months out from his transplant. While I was visiting with him, he was gracious enough to ask if I had any transplant wisdom to share with him -- a question I was completely thrilled to be asked. And so my brain started rolling with ideas and I thought, why not make a blog post out of this to share with everyone?

For those who may not know me very well, I am a 38-year old woman with cystic fibrosis from Raleigh, NC. I was transplanted at Duke University in 2014 and have had an overall smooth experience. I realize my advice will reflect this, but I also hope it will be relevant to people with all kinds of experiences. So here goes.

1. Insurance, insurance, insurance: Be sure to do everything in your power to keep it, especially if it's Medicare

No one wants to think about insurance. But after a transplant (and before, although afterward is trickier) your life and well being literally depend on it.

If are on Medicare and would be in trouble if you weren't, be very diligent about a) going to a clinic appointment every 3 months (doesn't have to be transplant if you live too far away) and b) making sure you are always always telling your doctors (and having them log) the things in your life that keep you from working. Do this even if your symptoms are not new, but are still continuing: "I am still sleeping a lot, needing a lot of naps, having trouble concentrating, my memory is horrible; I get tired easily, need daily naps, have unexplained headaches from time to time" - whatever pertains to you and would keep you from being able to hold down a 9-5 job from the government's point of view.

In order to keep my medical records as succinct as possible, I also get all my labs done at Duke, all my tests, and try to see as many of their specialty doctors for my needs that I can. I believe that makes it easier for a Medicare reviewer to get an accurate snap-shot of me as a patient without them even having to get me involved.

I also try to keep a home log of as much of the daily irregularities, strange pains, sicknesses, etc. that crop up just in case I ever do have to prove anything to Medicare on my end. I am far from perfect at this, but at least my little book gives me a good start should I need to recreate these symptoms one day.

It is always a good idea to be looking ahead and planning ahead in case your insurance situation changes unexpectedly. Try to figure out what you'd do if what you have in place falls through. Take advantage of the financial councilors at your transplant center. As a last resort, look into the requirements to move to Canada, where CF patients live 10 years longer than we do. (I kid, sort of.)

2. Expect weirding* from your body

In addition to giving you that new chance at life, transplant does the most strange and unexpected things to your body. I call this weird-ing. Some of the strange things that have happened to me for an "unknown reason" include: irregular migraines; persistent, night-time coughing which seems undeterred by either really good sinus care, guaifenesen or anything else obvious; periodic unexplained lab test irregularities; crazy bruising that comes in waves and uglifies the skin on my legs for weeks at a time; unexplained skin allergy issues, even after undergoing extensive skin  testing; random swelling of my glands that goes away as quickly as it comes; and much more.

Skin patch testing at Duke to see if I'm allergic to...everything!

While these things take turns being annoyances in my life, they are certainly not huge in the big scheme of things. And they are not things that turn my life back to the days of feeling like my life revolves around my health - at least most of the time. For that I am grateful to the universe. And I thank this same universe for the relative absence of complications I've had.

More fun things: I have also dealt with more common post-transplant cosmetic annoyances including: Post Nissen surgery (stomach wrap) puffy belly; hair falling out (early on); torso itching as well as phantom itching in places where my skin is numb - no matter how I itch it does nothing to relieve the itch (from nerves healing); puffy steroid face (also early on); and having to be fully sunscreened and/or clothed outside at all times; I guess some people would consider living with a belly full of scars to be a cosmetic negative, but I am proud of my scars and they don't bother me.

Another "wonky" thing I will add here is that my insulin needs have completely changed over the last three years. They have changed in the direction of me needing a lot LESS insulin (I'm on roughly 1/3 the dose I used to be on) which is good in the long-term but really dangerous while you're trying to figure this out and to adjust for changes. This period has been one of immense frustration for me. Insulin needs do tend to fluctuate, but what I've experienced (to the point of losing consciousness twice in a 6-month period), has been out of the ordinary. (It was because of this that I went onto a continuous glucose monitor, a small pod that sticks to my belly for a week at a time with a small tube in my skin, which tracks my sugars up to the minute (almost) and warns me of falling and low blood sugar numbers.)

3. Some things with your body will go downhill or become more noticeable

After your body has figured out how to breathe and is not constantly fighting off infections, it turns its attention to other maladies which may have only been slight problems in the past and starts paying much more attention to them (i.e. sending a lot of white blood cells to the area which cause chronic inflammation and leading to more problems.)

The biggest change for me has been the increased problems with my sinuses. I have pretty much always had chronic severe sinusitis, but I've never needed surgery and it wasn't until after transplant that I was forced to start doing saline rinses twice a day. That regimen quickly elevated to saline + a steroid + an antibiotic rinses twice a day, which is where I'm at now.

To explain the danger of this, I have gotten 6-7 sinus infections in the last two years that eventually made their way down to my lungs. Fortunately, I was able to fight that with a good old oral antibiotic for a couple of weeks. The danger lies in the repetition of this cycle, as far as protecting my long-term lung health. I try to be as good as I can be with preventative care, but almost every cystic I've ever met will talk about sinus rinses in a loathing manner; I am no different. 

Lastly, the meds themselves cause problems of their own! The biggest problem is for the kidneys. I have been doing OK in this respect, never great, but hanging in. I am constantly trying to stay hydrated, keep my blood sugars in control and not do things that will dehydrate me. But I am far from perfect, and I like to drink coffee, wine, and I don't always like just plain water...  But it's time for me to see a kidney specialist. And that's what I'll be doing in August - hopefully to get a jump on ways in which I can preserve my kidney health to avoid needing a kidney transplant.

Smaller things: I have had to go on blood pressure medication for the first time in my life. I have to see a dermatologist twice per year to check for unusual skin spots. The meds bring old sun scars out on your face even if you get no new sun after transplant.

Zoning out at acupuncture - this was for my sinuses

The bruises I get are awful - the current theory is that occasional stress on my kidneys from dehydration, along with the Prednisone and baby aspirin that I take regularly, combine to make my skin super susceptible to bruising. Right now, if I showed my legs in public, people would ask if everything was alright at home.

4. Health is temporary (and also sometimes hard to explain)

When people ask how I am, one of the things I'm fond of saying is that "you're only as good as your next set of labs."

Labs generally are monthly, but there are many times when they have become weekly rituals for me. Like right now! Three weeks ago, my labs were great except for a couple of things, which we addressed; two weeks ago everything was messed up (by "everything I mean the 5 or 6 things we most closely track); last week, things were really good again except for this one outstanding nuisance of a thing that we cannot figure out. And that is a taste of how rapidly things change in this world. Doing "well" or "poorly" becomes a less informative description and the norm becomes fluctuation itself.

I'm fortunate that I feel well most of the time (besides intermittent low energy/needing a lot of sleep, which I'm finally beginning to think of as my normal), so unless someone asks me how I feel and they are familiar with any of this nitty-gritty stuff, I usually just say I'm doing fine.

Similarly, another thing that is true of post-transplant life but is not always revealed to the casual inquirer, is there is almost always something going on. Whether it's a wonky lab result, a random new pain, something that's just not feeling right, something you think might be cancer (that happens more than you'd like since the cancer incidence post-transplant is so high) - there is always something like that going on in my life as a transplant patient. The key is to not let your stress levels rise even as your precautionary self stumbles upon, and even starts investigating, something potentially worrisome.

For instance, I said I've been feeling well, and I have, but this morning I woke up with two very swollen and painful glands under my chin. I took some Tylenol and it's getting better, but still part of me will be wondering in the days to come if this is because I have contracted something from that children's birthday party yesterday or (more likely) that I just did too much the last several days.

I hate to keep mentioning this, but I really have been stressing about the bruising on my legs. It really bums me out feeling so "fragile" and not knowing the cause. I also have this other strange thing going on - in addition to the mystery lab result - that feels like a combined low blood sugar/high blood pressure throbbing head/slightly buzzed sensation. Who knows about that. I'll have to bring it up with my coordinator but I probably won't know more until after my next set of labs!

Sexy time!!

5. Allow yourself to start thinking long term

The other strange thing that's happened in the last three years is that I have had to slowly and painfully shift perspective on my potential lifespan. My experience living the last few years has been mostly awesome, and each day that passes I have only more reason to think that my life will not end prematurely. Sure, on paper, the statistics aren't what I want them to be, but it's sort of in the same way that that's true for everyone. So I have reason to believe I'm in this for the long run, and that's something I never could think about pre-transplant. It was always "now" and the abyss. I was used to that.

An entire list of potential lifestyle changes goes along with this non-futilistic "growing up" realization. Like, you kinda want to start taking care of yourself so you don't die of something dumb.

My coming into this has included things like more water drinking, trying to exercise regularly, buying quality foods to nourish my body and cutting back on or quitting things like processed foods, meat (although that's for many reasons), diet soda, chips, candy and crap like that. I think these types of changes are hard for anyone, and a lot of people seem to struggle with them. I struggle too. But I am proud that I feel non-temporarily "adult" enough now to be striving to be healthier.

6. Treat your life like it's special, but every moment does not have to be special, either

One of my biggest priorities since I recovered enough from my transplant to travel has been making time and going to visit my family. We are all spread out! My mom is nearby in NC, but my brother's family is in Michigan, my step-mother's family is in Ohio, and it goes out from there. Todd's family is no more centralized. His brother (and previously his one nephew) is in Montana, some of his family is in the NC mountains not far away but others are all over. I have taken many road trips to see both friends and family. I have never left a vacation thinking this might be the "last" time I see anyone. But the truth is, that's always a possibility.

I have filled my time since transplant with many people and many things. But I've also spent the better part of the first year, and no small amount of time since, just "being" -- whatever that happens to mean for that day. Sleeping in with my cat? Yes please. Going to the thrift store on a whim to look at the kittens or puppies because it makes me happy? Yes, definitely. Stalking two-faced, cutest-kitten-in-the-world, Pippa, at said thrift store and finally adopting her? Yes! (I digressed.)

Maybe I fool around on the internet all day (something I find increasingly less satisfying). Maybe I spend four hours cleaning up my email, or deleting crap on my desktop, or doing research on something I don't really need. Or cleaning window sills, organizing and getting rid of things. Maybe I lie in bed and read the news all day? (Just kidding, I can't stand to do that anymore. I've been off news for a while now.)

"Good" (more productive) days means going to the gym, doing some yoga stretching, taking care of something that's been hanging over my head, reading, writing, walking the dogs, working on my volunteer stuff. But not always. And I think it's important to allow yourself that - especially the first 1-2 years. And to NOT feel guilty about "doing nothing."

 7. Find a purpose 

It took a while, but as the first year of my transplant recovery dragged on (and I dragged on with it, feeling frustrated by lack of energy/progress/moving forward and all I still couldn't do) I slowly realized a subconscious goal I had set for myself somewhere along the way. In my mind, I would be "fully recovered" from transplant when I was able to go back to my part-time job from which I'd been forced into retirement. I loved that job, and I loved and missed many of the people. I slowly decided that volunteering, something I was already doing a little bit, might be able to fill that void in my life. And it probably took another year for me to really be okay with this and to feel like I had not failed or lived up to whatever expectation. Life had changed, and so I'd had to change with it.

I don't think that everyone will feel this way or even be able to relate to this. My point in sharing this is that when I had my hands in three-plus organizations that I really believed in and knew I was helping people, it really helped me to feel good about what I'd chosen to do with my life. I think that is the important part of this: find something to do that is important to you! Maybe that involves helping other people, maybe it doesn't.

(My little reward after finally accepting my "new life" was to order some nifty looking business cards. I carry them with me and give them out when I solicit auction items, talk to someone who needs volunteer writing or editing help or meet a new friend who I'm trying to recruit for one of my projects. I feel a real sense of pride in having them. It makes me feel like a professional me.)

Soap making is one of my favorite hobbies.
Our 808 Soap facebook page.

I also think that hobbies are great ways to reengage with the world. Whether it's a craft you can give more time to or maybe even start selling, a skill like woodworking you now have time to improve upon, or perusing the things you used to love but have had to give up (games, book clubs, seeing movies, bible study, whatever!) these things give you a sense again of belonging to the world, instead of sitting in transplant world looking out at it all.

I also recommend getting more involved with your community - going to community meetings or contributing to discussions on neighborhood list serves or NextDoor. I've really enjoyed feeling more control of my immediate surroundings and being informed, instead of surprised, about the next big road closure, a new traffic light or a school being built.

Many people I have known post-transplant are very involved with multiple online communities, groups, informational sites, etc. And that can be rewarding and informative too. But there's something about interacting with people in real life that means so much more to me. Especially as you get farther out from transplant, I encourage every one of you to take that step out of the online world and into the real one. Living in the real world is something that many of us with CF have been limited or restricted in doing for much of our lives. Be smart about staying healthy, of course (avoid or move away from sick people, sanitize/wash hands often often, and always carry a mask with you just in case). But for life's sake, try to get out there and really LIVE. The reward can be enormous. And hey, maybe we'll run into each other sometime?

Dorking it up with the Carolina Hurricane's mascot, Stormy

*I totally stole this word from one of my former Nature Conservancy co-workers, Sam Pearsall. In the early 20-teens, he often referred to climate change as "global weirding."

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.

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!