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!!