Transplant meeting, allergic reaction, and an afternoon at home.

On April 3rd I had the transplant meeting with Dr.C, who is a respirologist both at the CF clinic here, but also at the Toronto General Hospital lung transplant unit. She goes back and forth as to keep tabs on the patients here, since so many will be transplanated eventually.

The meeting went very well. Dr.C was very informative and positive and really quite nice. We started with my medical history (which was all in my chart, but this is how any consultation with any doctor begins) as well as her handing me over the tx (transplant) manual. I was very excited to get it. It felt like a big step for me, that manual. That much closer to a very big moment in my life. Something I always knew would happen, but never knew when. Well it could very well be now.

From there Dr.C went into the finer details of tx. There is so much to know. From the medical perspective, to the social side such as coverage for all the drugs that you will be on for the rest of your life. From the pets that you could own, to the ones that you should not. The activities you can do after (which is basically everything) and the ones that they advise you not do (scuba diving for example). All the tiny bits and pieces. A general introduction, but I learned a lot.

I was asked about how I felt with proceeding to assessment. Did I think it was the right time? How was my standard of living, my ability to participate in every day activities? I was honest. The fact was that 2.5 years ago when I got married, I was already not doing a lot of things. Spending hours a day on my medical care. But then it was all worth it. I was able to participate in my wedding day to the fullest extent, which was a very long long day, and never once thought about my breathing, being out of breath, or feeling weak. I was also 128lbs on my wedding day after losing quite a bit of weight from the stress of getting married. These days, only a couple years later, my lung function went from 48% then , to 25% now. I was never on oxygen until this point, now it looks like I will not get off it until tx. I am having trouble maintaining my weight of 118lbs when on treatment, and slip into the 110lbs range when off IV's. Putting on weight when you feel weak, tired, and sick from the meds, in nearly impossible these days. It's a battle. But most of all I think about the things I don't do anymore. Right now I do nothing but medical maintenance. But even half a year ago, going grocery shopping was really hard. Walking in a mall was something I gave up on many years ago. I stayed mostly on the deck at the cottage last summer and only made it to the beach a few times. Parties, social settings, and anything outdoors wear me out so much, I generally avoid those settings. And if I did manage to go out, I felt it for days and days in my lungs and the rest of my body. I can go on and on, but the truth is, I can't live like this anymore. Now that I need oxygen, and I desaturate when I stand up without it, my mobility is so compromised, that life is not worth continuing this way, if there is an alternative. And there is!

Dr.C agreed that she thought getting assessed was a good idea. The way I feel about my life right now, along with my terrible numbers (lung function, SAT's and inability to get off IV's) she thinks that it's time.

I have tried to change my mind set, and realize that my health might not get better at this point. Anything can happen, I know that, but with my lung function it can only get better for a little bit, I don't want to destroy my body from the effort of breathing for another year or two. I am tired of being this sick. It is very hard, quite painful, and has been a part of my life for too long. Saying all this, I have a strong feeling that it is time for tx. I want to enjoy what life has to offer, especially as my daughter starts to walk and run in a bit over a years time. I feel that I am doing this for her as much as I am for myself and Martin. We all deserve to have mommy better, and be a part of life as it should be. I see this as the end of my CF journey, and the start of the tx one. That allows me to concentrate on the positive and not start thinking about what is actually going to happen.

It's going to be a long process. Enough time to see if I get a bit better, or not. So there is no danger of me getting the tx tomorrow and thinking may be I would have recovered somewhat?! There is tons of time for the process to get underway, and for me to get used to it. Overall I am excited and in shock at the same time. I know it will all be okay, and that the toughest part of it all will be this time waiting and not feeling that I am getting better, but worse. I am so unwell and cannot imagine being like this for the next year, but I have no say in that. That's a time that hope will guide us. I have no doubt. As well as the love that we will experience with our little girl at home with us.

I did end up having an allergic reaction to the antibiotic that I was desensitized from on Thursday. It just didn't work. It was not as aggressive as the reaction I had to it before the desensitization, but it was enough to decide to discontinue it. So I am now on the other one that I was desensitized from, and the origional one I was on when I came to the hospital. It is what it is. We gave it a go, but an allergy is an allergy.

Today I get to go home for a few hours....ahh....home. Of course Martin left for Russia last night =( I had him home for 3 weeks, so I should not complain. Though I was in here pretty much the whole time, he was here constantly and we did have some nice time together taking about our baby and finally deciding on her name for sure. It was fun. Today I will see what the nursery looks like, since it has been coming together as I have been in here. May be I will take a picture for you guys, though it is not done yet. =)

Today might just be a good day.