A weekend away

What a perfect weekend Martin and I just had. After the long and vacation-less 2009, this was our first get a way together. What made it even better was that we were able to enjoy more of our trip since I was able to use my brand new lungs. How great is that?

It was Martin's 36th birthday on Friday, the 26th. So I booked a one night spa get-a-way at the Prince of Whales hotel on Niagara on the Lake, Ontario. Just a little less than 2 hours from Toronto, for those that are not familiar with the area, this little town in just magical. Think Victorian architecture, wineries galore, art galleries, boutique hotels, and of course the Shaw festival. What made it all that much more magical was the snow storm that flew in the night we were there, that made it like a winter wonderland. Just perfect.

We walked through the streets, with the snow falling in our faces, and we truly appreciated the gift that we have been given on November 21, 2009. It was not only the gift of my life. It was the gift of freedom, of love, of hope. It was the gift given to Martin in the hopes of a long life with the spouse he chose to love. It was the gift to Scarlett of unconditional love from her mom, and to witness that love transcend the most trying times imaginable. So much was given to us a little over three months ago, and it seems like we are yet to discover how much was really given, as we discover more and more each day, that hope in itself is a gift.

Things I can't live without as a CF and Tx Patient

There are a few things that as a CF patient, and as a Tx patient I really really believe in. I'm not talking about my medications and treatments, those are a no-brainer. I'm talking about a few things that I have found to be really successful over the years in helping control some of the symptoms and progression of CF, and now of my new lungs. I believe in these things so strongly, that I thought I would share what I have learned in the hopes that other patients can may be find that they work for them too.

So here it is, my list.

1. NeilMed Sinus Rinse: This I did not discover on my own, it was recommended to me by my doctor, that swears that this natural salt rinse will significantly cut down the number of infections a CF patient will get per year. Since most people with CF have sinus issues, and grow the same bacteria in their sinuses that they do in their lungs, it is common for that sinus drip to find its way into the lungs. Basically the CF patient will infect themselves. So what starts as the sniffles, ends up being a full blown pneumonia. Over time, using the NeilMed will not only cut down on the number of infections, but also stop a runny nose, which is a nice bonus. There is nothing worse than a constant runny nose. An irritating affliction most people with CF deal with.

The really great part, is that after transplant, the NeilMed is especially crucial. Since my lungs are new, and clean, keeping them that way is the most important thing. Unfortunately the rest of me is still CF, especially my sinuses, and still have all those old bugs. When I came out of the hospital the first time like many of you remember, after a week at home I had to go back in due to an infection. That infection came from my nose. I infected myself. It was then that I was reminded once again how important it is to use my NeilMed everyday, twice a day. Keep those sinuses clear, infection free, and thus my new lungs infection free too.

I would recommend that EVERY CF and tx/cf patient use this. It's cheap, natural, and easy to use. I love it!! I can breathe well after using it, it gets anything out that needs to come out, and of course keeps it out of my lungs. Which is the most important thing. Recently I have heard from another CF patient that says she has not been sick once in 2 years, and thinks it's all due to her using the NeilMed. She even said that if she gets a head cold, she immediately does an extra dose of her NeilMed, and the cold is gone. And her lungs are clear from any infection that could have resulted.

Below is a pic of what the NeilMed looks like in case some of you want to pick it up. I'm a believer and really think using it consistently can save both CF and tx lungs.

2. Okay, the next one is my own personal discovery that I have been preaching about for YEARS. Metamucil: Yes, the fiber orange drink, Metamucil. When I was in my late teens I suffered from chronic obstruction. Yes, I can say constipation, but for those that have CF, this goes WAY beyond constipation. In many cases CF patients have to drink nasty concoctions such as Go-Lightly, Mineral Oil, take laxatives, or even have their bowels operated on. Scary stuff. Besides the fact that this type of obstruction is terribly painful, it is also terrible for the body. After a few years of dealing with this, and seeing specialists that only seemed to make the problem worse, I discovered Fiber. Yes, simple, natural, yummy fibre. I was visiting family in Chicago one summer, and my aunt told me I should give it a try. I was miserable after not going to the bathroom for days, and was losing weight since I was not eating. It was very painful and well, you get the idea. So I tried it. Thinking this will do nothing for my CF obstruction. But it was literally like a miracle. That day all my obstruction issues ended. If I ever slip up and stop using it, all the issues come back - and like most people with CF - I would rather not experience such slip ups. The great part is that it's tasty and easy to drink. You can put it in water, or orange juice. Drink a cup in the morning. That's all. If you are a CF patient, and you have these issues, slight or severe, give this a try. It will do no harm.

3. Finger Pulse Oximeter: Below is the one that I use. It cost be less than $200cdn. It's awesome. I have had it for years. It was more handy when I was just pre-tx and needed to make sure that I was not desaturated while on oxygen. Or that I was not giving myself too much oxygen thus risking the retention of Co2. But I find I check once in a while post-tx also. It's a quick and easy way to make sure that my oxygen is okay. It also has a pulse reading, which I like to use when I work out. To keep me on target. I would recommend that everyone have one, especially if your CF is at the point where you require oxygen.

I know that doctors often say not to focus on the numbers. I never really got that mentality. If you think about it, when the numbers are good not focusing on them is fine. But when the number is off, focusing on it will probably be quite valuable in diagnosing a problem and getting the proper treatment. For some reason it bothers medical staff when patients have these resources. But I believe, as long as you understand what the numbers mean, and how to act upon seeing a discrepancy, they can help a chronically ill person manage their own illness while allowing for independence, a sense of control, and a proactive lifestyle. Plus, I believe having oxygen at home, and not having an oximeter to check what you are SATing is like taking insulin without having a blood glucose monitor to check what your blood sugar is. Especially since at end stage lung disease things often change day to day, and adjustments have to be made. This should all be a part of CF education.

4. MicroPlus Spirometer: I never had one of these before tx. I just got one after, as it is a requirement at TGH for all lung transplant patients. The machine is about $600-800cdn. It's small, portable, and has really been a great part of my tx recovery. I use it every morning, the same way, same time, after the same routine. I record my 3 blows, the highest one counting for calculating if I had lost or gained since last time. The idea of this being to see patterns from day to day. Sometimes its a bit lower or a bit higher, but what the team looks for is a 10% (of total L) or more drop from my 'baseline'. Baseline being established after about 6 months post tx. If there is a 10% drop, I have to call my EZ call answering service and let the team know. If I have no other symptoms (no fever, no shortness of breath) we'll wait a day or two and see if it was just a bad blow, or is infection or rejection present. But if other symptoms are present, a clinic or ER visit might be needed. Either way I always keep the team informed about what's going on, which I really like. The cool part, is that this 10% drop can predict an infection that is days or weeks away. That's why it's so important to be consistent and do spirometry every day. Notice those changes, and notice infection before it gets out of hand. How cool is that?

Again, this allows me to feel more in control of my health care, to be proactive, and most importantly to possibly predict a life threatening infection. Between this number, my temperature, and my oxygen, I can go on with my day and feel good about where I'm at. And the whole thing takes me 5 minutes of my time in the morning.

So there you have it, my top 5. Of course I excluded Scarlett, but she's a must. Puts a smile on my face every day.

You push, push, push, push, and somethings gotta give. And it does.

Pain stinks. But when it's over, and some relief comes somehow, it feels so good. Like the skies open up.
I feel like I have been pushing and pushing through the pain and the misery that comes with it, and finally, finally I have arrived somewhere else. Standing still is not my thing. So this is great.

I had a busy week, mostly at TGH. I am working out there more and more, and even take up days that I am not due there, just to get some extra time exercising my body. I also had clinic this morning very early. I wanted to have them check a few things out - basically me being super careful with everything. The great news is that my lung function was the highest yet, and everything else looks great. Going to tx clinic, as opposed to my CF clinic, is that when I went to my CF clinic it was bad news pretty much always. Always lower numbers, always something. Here I go in and actually enjoy speaking to everyone and seeing my numbers grow, seeing that great clear x-ray, and that higher weight. It feels good.

After clinic today I went to the treadmill room and got a god work out in. I really pushed it on the bike for 40 minutes. It felt amazing. I went up in all my weights also. 7lbs bicep and triceps. 5lbs ankle weights for all my leg exercises. 5lbs for squats. All felt challenging, but good. The changes in my legs and arms are really starting to show.

So, in 2 days I will be 3 months post transplant! Which means that I will have my assessment and which also means I will start to go to my club to work out. I always said that I would wait until my 3 month until I went to work out somewhere else but home and TGH. Mostly as an infection control protocol. I'm pretty excited about it. I want to start with a beginners YOGA class to get my flexibility back - since tx I am so stiff and sore, I know this will really help.

Yesterday was a special day, that I hoped to mark with a post, but it was just too busy. It was Scarlett's 7 month!! My little girl is getting so big. She's doing so many new things, sitting and laughing and rolling EVERYWHERE!! It's quite amazing to watch. I just hope I can run before she can walk =)

Celebrating a good day today, and hopefully many more to come.

Never expected this

This past weekend was a mixed bag of good and not so good. Martin and I enjoyed some time together with Scarlett and family and friends. Then yesterday I had a terrible day. Strange symptoms and pain, everything came crashing down. No idea what was going on. My Sats were 99%, my FEV1 that morning was really high 3.1L. So what was going on? I started to shake, and had cold sweats. No fever. Just agony. It got worse and worse. I ended up in bed, falling in and out of sleep.


It took me a while to figure out that I was having withdrawal from a pain killer that I am on, Oxycodone. What?! Are you serious? This is not happening? This is all I need!! I actually hate the drug. I don't like the way it makes me feel, but when I was in terrible pain, it helped me deal with it. The worst part of all this, is that I was never told that the dose that I am on could be so addictive. I had the understanding that it was such a low dose, that I could stop taking it when I thought it was time, and that would be that. So that's what I did. I stopped taking it, and this is what I got. Now, I have been in a lot of pain during the last 5 months, but I can safely say that this is some of the worst pain - withdrawal. Of course I read all about it, and figured out quite quickly that this could be a serious problem. This is why people can't get off them, the pain of doing so is unbearable to many people. Grrr....I don't need this!!


Anyhow, so as of now, I went back onto the dose that I was prescribed. As to alleviate the withdrawal. I don't want to do anything to harm myself, but I also want to get off these pills ASAP. I certainly feel like my team dropped the ball on this. That hospitals and clinics do not talk to their patients enough about the nature of these drugs. Again, I was always very careful when taking pain killers in the hospital since I did not want to become too sleepy and inactive. But I saw people that were on such high doses, for so long, that I think it hindered their tx recovery. And it seems like the doctors and staff do not pay any attention to the addiction that could result. But addiction never crossed my mind. I had no idea that the physical nature of addiction could be this powerful. I have NO emotional need for this drug. I don't like how it makes me feel, and only have used it when in extreme post operative pain, which I have experienced. Now all of a sudden I try to stop taking it, and my body goes nuts.

Needless to say I am frustrated to have this obstacle. I am also quite scared to start to come off the pain meds, now that I know how sick I can get. My body just seems so sensitive to everything after tx, its amazing. I try to stay focused and positive and recognize that this all takes time and it's all a process, but I also get down when things get set back like this. When I have little control and need to sit back and take it easy and wait until things settle down. I try very hard to think that this will pass, and it will be over, like all the other things that have happened since November 21st. But it's really hard sometimes. These seem to be some of the most extreme symptoms yet.

I have called my tx team and we'll see what the plan will be. I am sure I will have to go on smaller and smaller doses, and still experience withdrawal. I actually just want to make sure I can get off them, and then never take them again. It's not worth it! I feel like such a dummy that I took these pills in the first place. Certainly put myself in harms way, and set myself back.

As for other tx frustrations - since I seem to be on the topic - I am in the process of booking my 3 month assessment. The booking is all over the place, and it's giving me stress. Things like having my lung function done at 7am and seeing the clinic at 2pm. Those long days kill me, and keep me away from home. Obviously I am generally frustrated today and need to re-focus.

What a day, what a life.

(Angie and Sophie, John and Scarlett, and Martin - today)



(Scarlett and I, today at John and Angies)

Today was one of the best days that I can ever remember having. I remember the dreary winters I used to have. Filled with flu, and being cooped up in the house, sick for the past few winters. Oh how things have changed. Even with this pain I am still having in my leg, I have to say this winter is proving to be better than any I can remember.

Martin and I took Scarlett to visit his parents at their new condo. We had not seen it yet (since they just moved in) and wanted to see it, and them. Scarlett loved visiting, and we just enjoyed how much she has grown and how much she loves peoples company. After that, we went to visit Angie, John and Sophie. Which was amazing. The two girls getting to see each other again - it's been a while!! It was such a nice visit.

Today, in many ways was a dream come true for me. I have always wondered what it would feel like to go out on a beautiful day with my husband and baby (like so many people do, without a thought that it just might be an amazing thing!!). Well it was better than I expected it to be. I cannot believe this is my life now. That these dreams are coming true. That I have boundless energy to do the things that I am doing, that I can do my hair, put on some make-up, and look more like myself again, that I can carry my baby, that I can spend time with her and she can get to know me. It's all like a dream. I am very much aware of what tx is and can be. This is why days like today I relish in. Who knows what tomorrow will bring. I never count on it to be anything like today, but if it is, I will just relish again.

Today, more than ever, more than I have to this point, I feel truly lucky, grateful, and happy. All I need is my health, my baby, my husband, and my family and friends. Today I also know that the battle continues for so many tx patients out there. I think of these people often. They inspire me to live better, and I pray and think of my fellow conrads out there. The battle goes on, and I know the suffering and the pain do too. Hang tight. Your lungs, your freedom, is coming. Just hang on.

(John holding his goddaughter - today)

Today I especially think of Eva Markvoort, the 25 year old young lady from http://www.65redroseslivejournal.com/ that is presently battling for her life. On Thursday, Eva posted a very upsetting video of her and her family, sharing with the world that she is passing away. I don't know enough about this story to say any more. I just know how close I was to losing my life, I know what I felt and what I went through along with all those that are in my life. In knowing that, I feel endless sadness that CF takes so many young amazing lives, in the terrible way in which it does. I will pray tonight for Eva and her family. Tomorrow I will live my day to the fullest. We should all live life well, in prayer for her.

Facebook | Your Photos - Us - Oct., Nov. Dec. 2009 and Jan 2010

Facebook Your Photos - Us - Oct., Nov. Dec. 2009 and Jan 2010: http://www.facebook.com/album.php?aid=153546&id=541641274&l=86c9e0e426

Some pics from the past few months.

Daily Life - update

The past week or so have been very busy. I am able to do more and more, both around the house and around Scarlett. It's been great, but with it has come pain in my shins and feet. Terrible pain. So far it has been decided that this is all de-conditioning of the muscles. Of course that makes sense since I have not been walking for months, and now I am running around all over the place, and working out, and using all those little muscles in my shins and feet that seem to be the last to come back. The rest of me if getting better and better. I am gaining weight. Looks like about 2lbs per week now. I am at clinic each week, as they are following me very closely. I work out twice at TGH with the physio team, and even though it's at the hospital, I really like the staff and the work out I get. I tend to push myself and actually get a work out in. I also have my new spinning bike, which I LOVE! I can get on it any time during the day without leaving the house and get a killer work out in. Martin liked to lounge on the bed and yell at me while I do it - getting me back for all those years he'd do his work out and I would sit on the couch and veg out on terrible CF diet food. He's loving the new me! haha.

The big change is that I got my home spirometer. It's a little machine that measures my lung function at home. I do it each morning at 9am to see how my lung function is that day. The idea is to be as consistent as you can, as to notice change day to day. The instructions are as follows. Do it at the same time, after the same routine, 3 times (no more or less), and record the numbers. If there is a 10% decrease (as in I am always 2.75L and one day I am 2.47 or under) this is something to give the lung team a call about. We have a system at TGH called Easy Call, which is a personal voice message service that each patient has to leave messages on or get them from the lung team. It is brilliant, as communication between the team and myself is very easy. I call my number, leave a message, they call back REALLY quickly. Love it. Anyhow, for interests sake, these are my numbers right now, that luckily enough correlate quite nicely with the FEV1 numbers I get at TGH at the PFT lab.

Feb 6th 9am

Temp: 36.59c

FEV1: 2.37, 2.75, 2.81

Feb 7th 9am

Temp: 36.45c

FEV1: 2.58, 2.58, 2.66

Feb 8th 9am

Temp: 36.46c

FEV1: 3.11, 2.86, 3.01

It is important to do 3 tries, as not every time you blow will be your best. 3 tries seems to work well to get an accurate highest number. The number that they look at when you bring them your recordings is your highest that day. I tend to get better as I go, most people do I gather, but this morning I blew my best number first, go figure. The spinning is really doing it's job to get my lungs working, I like 3.11L!! Woohoo. I know that I usually speak in percentage terms, but since those are not true (depend on the machine etc) using liters is better practice. For those that are not familiar with what that means, when I was pre tx, I was about 0.56L at my lowest when I was able to measure (blow into the machine). I was just over 1.0L for the past 5 years or so, which is about 30% lung function. So you get the idea, that 3.11 is very high. Way into the normal lung range, between 80-100%. I know numbers are not everything, but they certainly paint a lovely picture of what lung tx can do for someone like me. Quite inspiring.

So that's the nitty gritty of my mornings. All this takes very little time. Being someone who always recorded how I was feeling, when, after what treatment, this is not a big deal for me. Measuring temperature each morning along with my lung function gives me a nice idea of how things are going. Gives the lung team a lot of information also when they don't see me. Being the true type A that I am, I love having this sense of control.

Of course this is not all that I do all day. Once I get the pills, and the tests out of the way, I am doing more and more and more around the house and with my life. It feels great, though I tend to over do it, and I pay the price with sore legs and feet. But I have a hard time sitting still.

Last week Martin and I went out with friends for the first time. We met our good friends M and P for a great Indian dinner, and since I have not been out for at least 8 months, and I have not seen M and P since the end of the summer, it was really a great night. In that time they had a baby, so we spoke a lot about Scarlett and their little K. It was something else, being a regular mom, out to dinner with her hubby with some friends, chatting away about our kids. Crazy, if you think where I was 11 weeks ago. The conversation still was mostly about the tx and all that went on, and I hope that I did not bore people to death. I have this need to talk about it with people, and I am starting to think I have to stop. Move on. Talk about something else. I don't want it to be all about me, I hate people that are all about them. But hopefully my friends know that it's something I just have to get out right now. There is so much to tell. I have to stop myself and remind myself that people have things to say about their amazing lives. Since I really do want to know, I am just too excited about my new life. I promise everyone out there, time will help me stop gabbing about it!! It's very selfish!!

Here is a picture from the night. I like getting a pic of me every week - so that I can record progress. Plus I love the fact that I am not in sweat pants or hospital gowns! Feeling pretty is something that you lose quickly after so many months in the hospital.

Martin took this picture when we got home. I wish I took one at the restaurant, but the four of got were talking and we never managed it. Next time!! So this is week 11. I'm keeping track =)

I know there have been some other questions that I did not get to answer from the Q & A, since they were added in during the last few days. I will take a look and answer them another time. Right now I am working on a few posts that are specifically for CF parents, as well as patients. Both to do with lung transplant, but also my experiences with school, work, etc. I feel like I have somethings to share.