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!!

Montana trip in pictures

The cabin, Ennis MT

Relaxing on the back porch.

My first drive around the lake we spot many many critters. Here, antelope graze.

The sisters take me shopping downtown Ennis and we stop for lunch (and huckleberry ice cream!!) at the Ennis Pharmacy.

Brad took us out for a float down the Madison - we saw 5 eagles that day! (3 bald, 2 golden). Here, Todd teaches Sawyer how to skip rocks.

Sawyer enjoys being on the boat, but he likes more 1) reeling in fish that his daddy caught 2) looking for rocks in shallow parts of the river and 3) rowing the boat and 4) fishing with his Spiderman fishing pole.

Brad instructs Todd where to cast - he knows enough to leave me to my own casting devices. :)

On our trip up to Glacier, we stop and see Sawyer's mom and boyfriend Michael in Missoula. They kindly offered us a free place to stay for the night - a luxury motor coach!

The next morning, Jill takes me horse back riding! She rode her own horse while I rode a (chubby) sweet older horse named Yuma.

View from atop of Yuma. It was a beautiful morning for a leisurely ride.

We stopped at a brewery for lunch in White Fish on our way up to Glacier from Missoula.

Our first looks at Glacier were a little rainy, but it soon cleared up to reveal amazing scenery.

At the peak of the "Going-to-the-Sun" road, we stopped and hiked The Hidden Lake Nature Trail. The views were nice, but the various critter sitings - a two-color version of the woodhcuck, marmots, picas and mountain goats - were even better.

Rock chuck - their version of a wood chuck.

So many really beautiful wild flowers in bloom.

Pink, purple, yellow and white flowers.

Snow and streams of run off dotted the Hidden Lake Nature Trail.

At the Red Rocks, Waterton National Park, Canada

Our adventurous hike through berry-filled bear country in Waterton took us to this serene lake. We got caught in a wicked storm on the way back!

Todd checking out some road side signs in Waterton.

Our last morning in Glacier we again rode the Many Glacier road - the colors that day were just astounding.

Having both come down with colds, we are extremely happy to make it back to Ennis. Here, a baby deer comes to visit us in the yard! We were wondering where her mother was and about an hour later she appeared - happy baby!

Once Roger has recovered from the flight out, we take the chance to get some family photos.

Hot tubbing with superhero action figures is one of Sawyer's favorite pass times at the cabin.

Todd and I go for an evening ride around Lake Ennis and witness a beautiful sunset from the day's smokey sky. Smoke from wildfires in Idaho kept me inside for a few days in Ennis.

On our last day, Todd and I take Sawyer to Virginia City. Here we are on the little train ride that goes back and forth between Virginia and Nevada Cities, two gold-mining frontier towns.

Not great, not terrible - somewhere in between

It is hard to describe how the week has been without sounding complain-ey, which is about my least favorite thing in the world. I will try to be brief on that stuff. But let's start with the good news!

808 Soap had a really successful First Friday. Several of our friends came out, and we had a really good time hanging out with everyone at Father & Son. We are doing a fundraiser for the Cystic Dreams Fund (founded in memory of my good friend Paul Mooney) giving 20% of our sales this month.

We also had a Kentucky Derby/Poker Tournament party yesterday that was a lot of fun. My horse was ahead until the very end! Such a tease. Really, we know next to nothing about horse racing but it is fun to get into it one day a year. Todd ended up winning poker! And I came in 5th place out of 20 people.

Also, had some really nice bike rides this week, continuing to enjoy the spring weather. On Monday, we rode to J. Betski's, a Polish and German restaurant not far from our house, and enjoyed an array of kielbasa, bratworst, pierogies and a strudel for dessert. It was good. :)

In less exciting news, my leg has continued to give me problems. I have been limping around now for over two weeks. I don't even notice it anymore, which is kind of sad. I was too busy to make it the chiropractor this week, but I was beginning to think I wasn't going to solve the problem there, anyway. I think this is an issue with my sciatic nerve, and I have an appointment with my primary care doctor tomorrow to start getting to the bottom of this. Biking or doing my elliptical machine don't seem to bother it, but walking a lot will irritate it. Fortunately it's not painful most of the time, for which I am thankful.

Also, the cold that I've been messing around with recently dropped into my chest sort of suddenly and I ended up taking Tuesday off work just to sleep all day. I did feel better after that. By about Friday I began to realize things might actually be settling into my sinuses, and I called my ENT to get on the antibiotic rinse we talked about. He was in surgery all day, and then when something did get called in, there was a problem at the pharmacy, and then my insurance didn't want to pay for it (that is very unusual.) So it will be Tuesday at the soonest before I can get on that.

I have mentioned here before about my father's respiratory problems and his pursuit of a lung transplant. He is now almost through with the evaluation process, and then his case goes to a committee to decide if he is eligible or not. Things are looking pretty good at this point. It is exciting, and also scary.

What I haven't mentioned is that my mom is also having some health issues right now. She has been off work on disability for the past couple of months not able to walk around easily. After this and that it was determined that she will need a hip replacement surgery. I hate that she has to make a decision like this, but I also believe that it can help her not only to be in less pain but also to get around more easily - she needs especially to be able to go see her new grandson when he is born in September (yay!). I'm also hoping that it will help get her into a better routine with being more active and being able to enjoy (hopefully soon!) her retirement.

Todd's dad is also having to deal with some progression in his cancer. But I think they've figured out another type of hormone treatment that might help him - after that they would have to try chemo. In the meantime, he and Todd are planning a trip out to Montana in June for two weeks. We hope the new hormone treatment will help, and that he can enjoy another good stretch of health.

So yes, I have a lot going on both with myself and my parents right now. As for me, I'm not really sure where I'm at. I am certainly not out of the clear as far as needing IVs. I have an eye to next weekend's camping trip, and I really want to be able to go - of course, only if I am feeling well. Maybe treating my sinuses will calm down my lungs. My lungs aren't terrible so I have some wiggle room.

My plan for the week is to get on the antibiotic sinus rinse and continue to push myself to exercise as long as I have the energy. And just take it day by day.

Fun stuff outta the way

I got the fun stuff out of the way in my last blog. Now time for an update about the serious stuff!

So the big, huge, ginormous news in my life is that my dad, who has emphysema and has had increasing difficulties over the last two years, has decided to see whether or not he is eligible for a lung transplant. The last time he was in the hospital, which is when I was in Montana, a transplant coordinator approached him and said that ostensibly he seems like a good candidate. So we will see how it goes.

I had talked to my dad about transplant a couple of times. I really thought that he was not open to the idea. But now, I think that "dismissal" was at least partly because his situation did not seem serious enough to him. But after having had a rough summer, things changed.

Even being the veteran I am dealing with lung disease and transplant, this is a lot of emotions to deal with. And I'm not quite sure how far I've gotten with it all. It is so hard to be so far from my dad (he is in Cleveland, OH and I am in Raleigh, NC.) It is hard to gauge how someone really is just by the phone. I'm currently planning to go up to visit him the entire week of Thanksgiving. I went up there for a week in April and it is so much better than the short visits. So I am focusing on that.

So that is the dad news. Now for the 'me' news:

1. I came down with a cold in Montana and I have been slowly, SLOWLY coming back from it. I have not been to yoga or exercised since we got back two weeks ago because I was worn out at the end of the day. Finally, today, Todd and I rode bikes downtown. It felt good to move again. And I will be back to yoga this week, too.

This is my first cold since starting on the NAC hard core and I have to say - again - I think it helped me a lot. My one year since IVs anniversary is coming up (Sept 29, baby!) and so I was really depressed at the thought that I would not make that mark because of situation that was preventable. Hopefully I won't have to worry about that now. My lungs are still a little more congested than usual, but each day seems a little better.

2. I went for a consult for another GI doctor about my gallbladder issues last week, this one at UNC, where all of my other doctors are. I really liked the woman. It was nice that she wasn't stumbling over the names of my CF medications and she didn't have to ask why I was on things. I completely agreed with her course of action 1. redraw my liver functions to make sure they are still not elevated; 2. redo the ultrasound from July to see the status of my sludge (since I have not been having too many symptoms, it may have gotten better); and 3. after seeing those results, then think about referral to a surgeon.

She did not agree with the previous doctor's recommendation of an endoscopy (nor did I). And, unlike the other doctor, she said my pain very well could be a result of my gall bladder. (Another interesting thing I found out was that the difference between sludge and stones is not a matter of consistency but rather size; so, enough sludge can cause the same sorts of pain and problems that stones do. But sludge, unlike stones, has the ability to be reabsorbed by your intestines and go away.)

3. My brother came down for a visit last weekend from Michigan. It was so good to see him! I love me some brother. He actually came down because we took my mom to see Garrison Keilor (of whom she is a huge fan) as our mother's day present for her this year (Summer of Love Tour, above). She had a great time. I was feeling pretty awful because of the cold, but I still enjoyed his visit. :)

4. My soap partner, Elaine, and I are getting ready for a big soap event in three weeks. We are going to be selling at a women's charity bicycle race called le tour de femme. So we are busy not only making soap but also trying to figure out how we are going to set up under a tent. We hope to do more craft type shows (there is this really cool thing in Raleigh called the Handmade Market that we want to get in on) but this will be our first one! Unfortunately, Elaine is going to be in NY during the event, but I will have a friend or two to keep me company.