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Dreams of an early discharge didn't happen this week. I should be going home tomorrow though. It feels like it's been a long week because the hospital Internet has been down for a couple of days and it made me feel isolated!

Basic hospital admission... things have been pretty smooth except for my port care. It was determined that I had to get the nurses on the floor to access and change my port needle, as opposed to the nurses in the home IV clinic who I know and trust. Sure enough, between my two port needles, I had seven pokes, no flushes, no heparin and one problem port. After my port refused to give blood return and would hardly flush, we called in the experts and had to use TPA for the first time. I was nervous, not to mention annoyed that this happened in the first place! I'm glad that the TPA worked and cleaned out the junk in my port. It's working like a charm now!

It's interesting that after the last two years, my view of the hospital has changed. I still feel a bit defeated when I get admitted, but I now feel safe here. I know I am going to get better. It's actually comforting. How much has changed in two years!

Transplant on My Mind

I had a nice Easter weekend and got to spend time with our family. My husband single-handedly prepared an amazing meal and got the house ready for company. I am finally starting to feel a little better everyday, which is a relief. I was supposed to complete my home IVs last Wednesday, but I didn't feel any better. Instead, we switched the Cefepime to Ceftaz for another week, keeping Tobra the same. I'm due back at clinic on Wednesday and I'm anxious to get rid of the IVs and port needle. The hospital switched needle brands and this kind has no cushion. It just sticks out and has gone interstitial once already.

I have been on the list now for nearly three months. The pre-transplant exercise program ended two months ago already. It's hard to believe that I've been home for that long. When I first came home all I could think about was tx. After some time, I thought about it less. Now it's back full force and I think about it constantly. I am having more anxiety, particularly at night when I should be sleeping. I know that my family is having a hard time waiting this long. Even though I think about tx all the time, I'm okay with the waiting process. This is all I have going on right now. Everyone else has contingency plans around work, activities, travel and childcare due to my tx, and I think it's adding up. It's hard to be ready to spring into action for an extended period of time.

Well, I'm just going to continue to get organized and exercise while I wait for The Call. It makes me feel better. I have been getting out of the house less, and I'm rarely alone when I do. My little routine at home is keeping me going!

Clinic Visit

I had my regular clinic visit today. Everything went well- both my PFTs and weight were stable. I have been feeling great overall since I got off of IVs mid-October, but this weekend I noticed a slight increase in SOB, cough and production. I'm keeping an eye on it. Everyone says how exhausting assessment week is... it often leads to a round of IVs. I'd rather be the exception and stay away from those!

All of the staff were excited to hear about my assessment. I had a few issues to take care of at clinic, including getting some referrals to see specialists before transplant. I also had to discuss what to take during my month off of Azli, the new antibiotic I'm on. It was decided that I'll take an oral antibiotic for the off month and see how that goes. I also had to get my monthly port flush today. It didn't flush well last time when I ended my IVs, but today it flushed easily. That was a relief! I even remembered to bring some emla to numb the skin over my port, and it worked like a charm. I didn't feel a thing!

Next visit is in one month!

Moving Right Along

Okay, I got a phone call this afternoon that there's a cancellation and I can be assessed next week for transplant. I spent the next hour wandering around the house, pumped full of adrenaline, trying to get used to the idea. See, I was originally told that the next available slot was mid-January. I told the pre-transplant coordinator that I was always available and this is my priority... and voila, here's a short-notice opportunity! It's great to be able to do the assessment while I am feeling good and recently off IVs, but I didn't imagine it would be so soon! I feel like I've been caught off guard, but this is good news and I'm happy about it!

Now to back up a little bit...

My transplant journey started on June 25th when my CF doctor sent a referral letter to the Transplant Centre closest to where I live. Three months later on September 24th was the next step… meeting one of the doctors for my initial appointment. This was an opportunity for my support person (my husband) and I to “discuss the possibility of lung transplantation.”

Before the meeting even started I had low blood sugar, so my husband went to find me a chocolate bar. Of course, that’s when we were called in. Wonderful first impression- me light-headed and my husband gone to find a vending machine.

The meeting started with a brief review of my history, then the doctor talked about the program, and then we had a chance to ask our questions. My CF history is rather boring until this year. Since Christmas I have been treated with IVs five times, went on oxygen, got a port, and saw my PFTs (FEV1) dip under 30%.

My husband and I left the meeting feeling pretty good about things. The doctor spoke highly of the program and their stats are well above the international average. They do 38-47 lung transplants per year, which is quite respectable. The most important tidbit we left with was that this IS the right time for me. I am in the window. My lungs are crappy enough but my body is still healthy enough. If your lungs aren’t bad enough, the surgery is hardly worth the risk. If your lungs are bad and your body is too weak, recovery can be compromised. It was reassuring that other doctors can review my medical records and confirm that this is it. There isn’t time to procrastinate and let more exacerbations take their toll.

Good thing I am moving right along!