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.