Q & A: The Answers 1 of 2

Thank you all so much for all those great questions. I had no idea there would be so many! But I love it, since I often wonder does everyone reading understands certain medical CF terms, or wants me to clarify something. This is such a great way for me to write a post. I will go by name and questions. And yes I do plan to answer all, unless they are the same question. So here goes.

Q: Carol: "Will you ever know who the donor was?"
Q: Julia: "Also wondering who your donor was"
A: I have not yet spoken about the donor family, and there is a reason for that. I have sent out my thank you letter, which will go out through the Trillium network, and that will confirm the donor family if they choose to respond. That's the politically correct answer. That's me playing by the rules of the hospital and Trillium donor network. But the fact is our story with the donor family is a very special one. The day after my transplant, the donor family contacted John (my brother) via email since our story was so public. Due to timing and many other circumstances, we are pretty sure this is the correct match. Of course this only happened since our story was all over the media and it was fairly easy to put things together. This is not something that the Trillium network is happy about, though I want to be clear that this was not us reaching out to get this information. I am happy that they did contact us. They are the most generous, wonderful family, and I will be thrilled to write a post in the future about them. Right now I want and need to play by the rules and wait for confirmation that this family gets my letter. But I can tell you that they lost a dear loved one, very suddenly, and their choice to donate came at the only time it could to save my life.

Q: Winter: "Is it true that you will never experience CF symptoms in your new lungs? And if CF affects other parts of your body, do you still have other concerns with having CF?"
Q: Taryn: "Are there any residual CF issues that you have to deal with post tx? Does it affect other parts of your body?"
A: This is a common and really good question. The CF will never 'come back' in my new lungs. These lungs are genetically different, which means they do not have the gene that is malfunctioning and creating that thick mucus that ruins lungs in CF. So this is the good news. This means that treating these lungs is totally different than those with CF, meaning that the lungs behave differently. I have to get used to what I felt was CF infection, and what could be transplant infection or rejection. There is a lot of education that comes with that, so that you do not confuse old CF body to new tx body. I am learning. As for my other organs. I do still have to deal with other issues but they are minor, and non life-threatening. At least for me and my history. Every CF patient is different. I have no kidney or liver problems. I am pancreatic insufficient but when I take my enzymes as I should (and I never miss them) I gain weight well and digest well. I don't see this as a problem per se. I am also a diabetic, which is of course a huge pain in the butt if nothing else. I have been a diabetic for years and years. Everyone post tx will have high blood sugars due to tx medications, so the fact that I already had a handle on it, was actually a blessing. I have little problems at this point controlling blood glucose levels. I do take it very seriously as I do not want organ damage due to high blood sugars. Again I don't see this as a huge problem, since I can manage it. Of course it would be nice not to take insulin, but I don't think about it any more, as taking my enzymes.

Q: Beth: "When you look at your scars what do you think, if anything?
A: Hmm. Good question. The truth is the scars are not an issue for me at all. I have long past the point of vanity in my life. Yes I love to have nice clothes, and dress up and I used to wear heels everywhere I went. Certainly enjoy girly delights. But I have also gained tons and tons of perspective after a life filled with CF, diabetes, PORTS, needles, bruises, and now the scars that I have. They are large, visible, and all over my body. I have my large cut, plus the drainage tubes. I have the Nova Lung scar near my groin which is massive and very ugly compared to the neat chest one. I have my trech scar on my throat which is healing and I think it will disappear eventually. But I also have little tiny ones from IV's all over me. I still discover them sometimes. When I look in the mirror I like them. I never worry about them that's for sure. I do have some sort of pride. They are battle wounds. They represent what I can't forget and somewhat don't want to.

Q: Barbaram55: "How are you finding the post transplant drug regimen?"
A: I am on a lot of drugs. Mostly new. I have a few cross overs from the CF regimen, but those are things like vitamins, and enzymes that I still take for digestion. Basically I got one of those huge pill boxes, have a chart that they set up for me that tells me when to take what, and I follow that. It's only pills, and it's really no big deal. The only side effect that I have is the shaking, which is getting better every day. The Prednisone (steroid) makes you eat more and makes you slightly puffy, but I don't really see that too much, and the appetite is amazing. I love being able to eat like this, and of course it's helping me gain weight, and fast! I am told that within the next few months, to a year, I will take less and less of the supplements that I am on now. When my nutrition gets better and I am back to a normal weight, like I was pre-tx.

Q: Sarah and Brielle: "...do you think you and I could meet up for a play date..."
A: Sarah and Brielle, I have been waiting to hang out since we met all that time ago!! I can't wait. Let's wait until spring is closer and that flu season is over, and we will have that play date. I can't wait to meet Brielle, and have you meet Scarlett. It will be a hoot!! Thanks for all your support Sarah!!

Q: Marti: "What was it like to be home after being in the hospital for so long, and what are your days like now. And what is your favourite thing to do with Scarlett?"
A: Okay, well where do I start with this. I was technically in and out of the hospital (first St.Mike's and then TGH) for most of 2009. It was a terrible year for that. In October I went in, not to come home until January 2010. That's 4 months, 4 long and difficult months. At first I did not want to come home. Even though I hated being there, I felt safe there, and was so scared and weak. But that feeling went away within a few days, and then I began to re-discover life. Home food, my bed, Martin, my family, and of course my Scarlett. Please don't think I'm nuts for wanting to stay there, but I think after so long and after being so sick, home is scary. I have heard this from many people post surgery. Anyhow, now things are so amazing. Every day I do more around the house and with my baby. My mom and I are enjoying the time I think. I hope she feels the same way. I still take lots of breaks and am told by the TGH staff to rest and not do too much too soon. And I generally follow these instructions, but the better I feel the more I want to do, naturally. These days I make sure to do all my meds and record my temperature and FEV1 level every day. I really take care of all that first, it's a family effort to make sure that comes first above all else. I exercise a lot, both at TGH and at home. I am working very hard to get better and better, and more and more fit. I of course do as much with Scarlett as I can, but right now I still can't lift her. So my mom and Martin do that. I feed her often, watch as Martin bathes her (which is very cute), cuddle with her, and sing to her. My favourite thing by far is when we hang out in bed together, she stares at me and touches my face and I sing to her. We just love each other. She reaches out for me and my heart melts and I love her more and more. Each day I can't believe I can love her more.

Q: Shirley: "Are you doing any advocacy for CF or Organ Donation"
A: Right now I don't have any more energy for advocacy. I liked the press that we got, and the fact that as a result of the media coverage organ donation was talked about. That's such a great thing. In the future I will do more, probably for organ donation more than for CF. I know my family, especially John, will always be involved, as well as Barb that did such an amazing job for the Toronto Star. But right now, I need to work on myself, and to get myself back physically. After 6 months or a year, I am sure I will advocate in some sort of way. I feel like it's such a blessing, organ donation, that can give people their lives back, that I need to always spread the word so that people donate. For me it seems like a simple problem to solve, getting more donors. It's all about education, and I think we're going to make leaps over the next generations.

Q: Lisa: "Why don't you have a feeding tube like most cf'ers do?"
A: My experience is that most adults with CF don't have a feeding tube. I don't know what the stats are on this, but I don't know many that do as adults. As for me, I was always a good BMI. I always ate well, and had a BMI of 21 or above. A feeding tube was never mentioned to me as an option or necessity. The last year I lost weight, and we knew we were going into transplant. I kept a great BMI until about September/October. At which point I got lipids (feeding through IV) and I gained tons of weight quickly, and then it was lights out for me. Next thing I knew I was post tx at TGH. I did lose SO much weight after, as you know. It's hard to be this thin, but I am gaining so quickly and eating so well, a feeding tube is the last thing they would recommend. Feeding tubes after transplant are just not commonly used. Many people have the opposite problem due to the prednisone, and of course your organs working so well. I am gaining about 2 lbs per week now, and that's a good pace. Hopefully within the next few months I will be back to my 120-130 lbs.

Q: Mark: "What are you feeding Scarlett?"
A: Haha! I love this question!! Well she was and is a formula baby! She started on solids at about 4 and a half months. She loves her baby rice, all sorts of flavours. My mom makes her everything fresh. Carrot soup, rice, apple sauce with pear or other fruit. She loves yogurt, and banana, and of course still has her formula bottles. I love that she eats only fresh home made food. She has not been sick yet, and we think at 6 months that's pretty darn good. She had the sniffles once (I think from me after I came back from TGH) and she fought it off quickly. We hope to start her on organic chicken between 6 to 7 months. That's the next step. She seems to be the same weight now but growing longer and longer (taller and taller I should say). So there you go Mark, I'm not sure you were interested in all these Scarlett facts, but I love writing about her!!

Q: Toni: waiting for tx and scared that the call will not come
A: Toni, I wish I could tell you not to worry, but I know it's so hard. But you have to stay positive and take it one day at a time. No matter what happens, or how lousy you feel, find something to laugh at each day. Find a happy moment, no matter what. Focus on your family, friends, things you love to do. For me it was my baby. It was my husband and the love on my mom, dad, and John. It was the unconditional support of friends, and strangers. It was my blog that I wrote in and let myself get distracted from the scary situation that I was in. Toni, I know it's scary. Waiting is so hard, but it's worth it. Try to deep breathe, close your eyes and visualize how amazing it will be, and how your pain and suffering (all that work) will pay off. It will. Be strong and brave, and marvel in how brave you are. Be selfish, this is hard. Harder than anyone who has not been through it can imagine, that makes you special and brave. Write me anytime, and I will try to say something to comfort you. I wish you nothing but luck, and I cannot wait for you to experience the other side of this.

Q: Angie "How do you get over or come to grips with the fear of rejection?"
A: The truth is I just don't think about it. I work hard every day to do all that I can to stay well. I eat very well - healthy whole food, no junk, I drink lots of water to keep hydrated. I work out, and do my meds religiously. That puts my mind at ease. I feel in full control. I do all that I can, and that is all I need. Rejection is a negative thought that can overwhelm you, same goes for infection. My advice is instead of wasting time worrying and thinking about it, do something! Get on your bike, go for a walk, eat a good meal, kiss your baby (if you don't have a baby, kiss your spouse, mom, dad, sibling, or your best friend.....) Good luck with being listed. I hope you have a very uncomplicated wait, surgery, and recovery. You can do it!! It is so worth it. Stay enthusiastic and positive Angie!! I wish you nothing but the best, and please email me if you need anything. I can try to answer your questions, and hopefully give you some sort of comfort!

Q: Shannysnewlungs: "Visitors? How are you handling friends wanting to visit?"
A: I know we spoke today at clinic, but I will give my answer here again. I am really really careful with having friends even family over right now. Flu season is scary for us right now, so generally I have had only a few people over. I have not seen most friends in months and months. Even some family for the past few weeks due to illness. It's terrible. I miss everyone SO SO SO much, but there are phones, and email and text. And that's the way it's going to be until spring comes and/or my meds go down a bit. And since I was always this cautious when I had my CF lungs, this is nothing new to people that know me well. They all understand and I love them for that. People that don't understand need to be explained that what can be a common cold for them, could be hospitalization, or worse for a transplant patient, especially so fresh out of surgery. But again, most people are more than understanding and often cancel dates since they feel slightly unwell and want to make sure they don't get me sick. I always appreciate those people.

Q: Lauren Grace: "They say that sometimes you take on traits of the person whose organ you have received. Do you have any new traits or likes?"
A: As far as know, not really. Nothing new. I used to love sugar, now I don't. But as far as I know my donor loved sweets. So as much as I would love to have some cool similarities and differences, I don't. May be I will notice things in time, but not now =) I too have heard people having radically different tastes.

Q: Angie: "What is a Nova Lung?"
A: The novalung helped me exchange gases during the time when I was on the ventilator and had severe problems with CO2 retention. When you retain CO2, just like when you don't have enough O2, damages to the brain and other organs can occur. I was put on it to help my body when I was on the ventilator. The novalung basically re-oxygenated my blood when my lungs were not able to do it any more. It's a small box that sits outside of your body, that your blood passes through. It is connected to a major artery. Mine was located at my groin (where the right leg ends). I have quite the scar to show for it, but it did keep me alive for those few extra days that I needed. It's a great machine, but a person cannot be on it for ever, so time is of the essence. It is certainly a last result life support measure.

Kathy - can you send me your email. I would love to write you personally, or may be call you? I know how you feel in so many ways. Hang on, fight hard. This is such a hard time, 2 weeks after, but you have to be strong and fight and be brave. I hope you trust me enough to give me your contact info, and we can chat. When I read your email I really felt for you. I know the pain and the fear, and the last thing you need is to feel alone. You are not. I am thinking of you, and wishing you a better day each day. My email is nataliaritchie@rogers.com You are NOT crazy! I look forward to hearing from you!! We can email, or Skype, or text, or msn....we'll figure out a way.

Q: Brian Michaels: "One or two things you want to do once you've recovered."
A: I tend to take things days by day now. I feel like I do things that I have wanted to do every day now. Small things, first, like taking care of my Scarlett and being with my husband in my house. This is so great for me! I took Scarlett for a walk in her pram the other day. It was something like a dream, since I never knew I would be able to so soon after the surgery. For the future I want to play tennis with my husband, with my friends, take some lessons. I want to run in the future too. So badly. It is the ultimate freedom for me. With that comes running after my baby once she starts to walk and run, I want to ski, to swim in the waves of the ocean....Oh sorry you asked for 1 or 2. My life has a lot ahead, I can't wait!!

Jessicajv: I will answer your question, and all the rest in the next post. I hope I did justice to the questions everyone! xoxo