A time to whine

For no good reason at all I've decided to take a day off from being upbeat and sunny. Yup. It's a beautiful summer day and lots of things are going well, but, this moment is for the downside. I was waiting to post something until my attitude is back up there. Oh well....rant on...

I'm tired about being conflicted about transplant. Yes, yes, yes...I want to live and continue to transition to being a better person with the opportunity to enjoy life to the fullest. But, conflict comes with knowing that my donor is out there living life now with, hopefully, the same joie de vivre. Alongside that, while I do hope to get "The Call", right now I'm not in pain and am fairly stable. After transplant I'll be in a lot of pain, have a 50% chance of living through the first year, need 24/7 caretaker assistance, etc. Yes, I know I'll die soon without the transplant. All it will take is getting a cold to make death more immediate. It's just difficult to look forward to extreme challenges that will come and those that may come from complications. It's hard to complain when others are giving up so much for me every day already and also look forward to more difficult times. Arrrrrgh! I look for ways to redirect cabin fever. I reach for the positive every morning. I meditate every night. The effort is nonstop. It takes focus and willpower. Some days that comes easier than others.

I'd really like the things on my "to do" list to happen more quickly. I've been wasting some of the precious time I have free now. Some things at the top of the list: (1) scan tons of photos. I want to label them and include any information I can so they are available for my kiddos. We just got a new scanner so it's time to stop percrastinating. (2) I also want to visit a Shambhala Centre that teaches meditation. One of my goals is to be at peace with myself. Meditation is a vehicle that helps me grow in that direction. (3) Conduct online research into new types of work for post transplant. Prepare. Poor me right? I'm throwing my own pity party here. You don't have to join in. It's just frustrating when the motivation temporarily fails.

I have blood tests drawn at the end of every month to check Voriconizole serum levels. Voriconizole is an anti-fungal medication used to treat my lung mass we believe is caused by Aspergillus. The last draw showed the amount of drug in my blood is under therapeutic range. So, yesterday, we switched to a new medication whose brand name is Noxafil ( generic = Posaconazole). This brings with it new side effects. The worst right now is digestive irritation. TMI? Too bad. It's reality. OK, the new drug does bring a bright side to the table in that I can use it with food. That means I don't have to wait as long in the morning for breakfast right? Or...no excuse for sleeping in? Harumph. Oh, did I mention that the old drug cost ~$2000/month and the new one is $7019.80/month? That's just crazy! I'm stunned.

Next topic on the list is neuropathy. I have numbness in both feet that occasionally travels up above my ankles. It started as a minor thing 3 months ago and progressed quickly enough that it was my main concern when I went to see my primary care provider last Tuesday. She found a pulse and said they felt warm to her. Thank you! Now the question is why and what to do eh? As to the why side of the equation I had more labs drawn last Thursday to explore some possible causes. If nothing definitive shows up there will be more discussion. Until then I have to walk carefully to maintain my balance. I can do it. I'd rather not have the problem though. Diagnostic imaging or arterial diagnostics might be in the discussion mix later.

I've also had a rash on the back of my right leg for 5 weeks that progressively got worse. It finally became painful and made it hard to sleep so I went into Urgent Care on June 5th. It actually looked somewhat better on that day of course. She said it looked like shingles at first glance but didn't present that way (shingles rashes follow the nerve line up the leg, this went across my thigh). Even though she didn't know what caused it she gave me some steroid cream to see if that might help. I already had a regular checkup scheduled a few days later on the 16th with my primary doctor so that would be the next step for evaluation. It turns out she doesn't know what it's from either. It's almost healed now without help. One more thing to add to the tracking list. Double Arrrrgh and a Harrrumph! In the meantime I have developed rashes on both arms which seem stable. I really hope they aren't the same thing.

I had a visit with my local pulmonologist on June 17th. We reviewed my most recent echocardiogram. My last echo showed thickening of the right atrial wall in my heart. I also had some increased pulmonary arterial blood pressure. My recent one indicates everything is normal. That's good news.

When I get good news like that I can't help but wonder why I can no longer do any of the simple things I could do up 'til a few months ago. I can't go out in the sun if the temperature is over 80 (walking for exercise). No more helping to unload the dishwasher slowly. I've had to ask for help folding my laundry the last two times and putting it away. I've needed help with some shower prep....

My next clinic visit with the UW transplant team is scheduled for July 29th. Another 6 minute walk test. More pulmonary function tests. More lab work. Meet with the nutritionist. No CT this time. I'll be glad to see the team there. Really. I'm not being sarcastic. The monitoring while waiting is just frustrating. The tests repetitive. Logistics are a pain.

I can still cheer on the USA team in Womans World Cup Soccer! I can dance in my mind when the Ellen show is on (I'm sure some of you know what that is!). Oh my....I signed up for a Wheel of Fortune spin ID#. That's scary!

There are soooo many people who have things a lot worse than I do while on the transplant waiting list. Many people don't survive to transplant. Fewer donor organs have been available this year. Thanks for letting me take a moment for myself. My next blog post will be about something positive. Promise!