Remembering

On the twelfth of December 32 years ago, Holly was diagnosed with CF. Back then, I was afraid to hope that I would have 32 years with her, yet here we are, and I am so grateful. Before Holly's diagnosis I felt a sort of elation as Christmas drew near; it was my favorite time of year. Now, however, December is hard for me. I experience an intense sadness that dampens my spirits. This year, though, I'm trying to focus on the joy of the season, the joy of my two daughters and three precious granddaughters, and, not least of all, the joy of Holly's good health. Yes, she has her problems, but she is so much healthier than we ever dared hope all those years ago. And I am grateful. Those of us whose children are threatened by CF know what it is to live with fear. It is ever present in the backs of our minds. And, if we are wise, we never take one day, one breath for granted. I have had the privilege, the joy, of Holly for 32 1/2 years now. It's still not nearly enough. So I'm wishing, praying for another 32 healthy years. Merry Christmas, Holly, and thanks for sticking around.

I'm thankful!

This Thanksgiving, I have much to be thankful for, not the least of which is Holly's good health and research that could result in truly effective treatment for her in the future. When she was diagnosed in 1979, the average life expectancy was 18, and now it's double that. Holly is much healthier at this stage than we ever dared hope. She is married to a wonderful man, and nine years ago, she gave birth to a precious little girl, Murren.

In October, Holly was hospitalized for lung and sinus infections. She had minor sinus surgery to clean her out and relieve the sinus headaches that had become daily occurrences. She was in for a week then went home on IV, oral and inhaled antibiotics. After she finished the antibiotics, it took her a couple of weeks to recover from the effects of the antibiotics, then she really started to feel better. Yea!

One of the interesting things, which I've noted here earlier, is that every time she's sick it's like the first time all over again. I always hurt and grieve for her and the normal life that she strives for, but will never really be. I try not to be over-dramatic, and I know that Holly does all the things she does, including hositalizations so that she can live a life that as close as possible to normal.

I have to also say that I'm thankful for Holly's attitude toward it all. She may feel awful, but she rarely complains. She's an amazing woman who is an exceptional mom, a great daughter, and, from what I've heard from others, a generous friend. I don't know how she has the energy to do all that she does.

I must also say that I'm thankful for Don Pfender, the young man who convinced my husband and I to have another child after Holly, despite the contrary advice of physicians. Because of him and his wise words, we had Vanessa Elizabeth Dawn. (Dawn is in honor of Don Pfendner.) Vanessa is my second personified blessing. Elizabeth means encourager, and she truly is. When she was small, we called her our cheerleader. She knows just what to say and do to encourage me just when I need it.

Thanksgiving is a truly special time for me with so much to be thankful for. I hope you'll join me this season in expressing gratitude for the many people and things we have to celebrate.

My hero!

Today was the CF Climb for Life here in Dallas, in which we climbed the stairs of the Bank of America tower and raised donations to benefit CFF. There I met up with the leader of our team, Beth, whose son, John Goldberg, died one year ago today, she showed up along with her family to support her and our team, which was called, appropriately: For the Love of John.

It was also a family affair for me. Holly was there, determined to climb, along with her husband, John, and their nine-year-old daughter Murren. Holly decided that she wanted to try to climb the whole way - 70 stories. I was hoping to make it 23, which was the first official stop. She left with a big smile on her face, accompanied by Murren. John left later with those planning to go to the 42 floor, and I was last.

When I arrived, huffing and puffing, to the 23rd floor, I was taken, via elevator, to the 70th floor to await the others and join in the after-party. I met up with John and we both kept looking for Holly and Murren. Finally, another member of our "For the Love of John" team found me (It happened to be the sister of John for whom our team is named.) and told me that she had met up with Holly and Murren on the 64th floor. They were going to make it!

When I heard that, I elbowed my way (as politely as possible) to the front of the welcoming group, so I would be the first to see her. I didn't have to wait long before she came through the door, triumphant, but emotional to be The One to accomplish it. We fell on each other and cried together. She is truly amazing. None of us, including her, ever thought she could make it all the way, yet there she was.

That determination that God gave her is what has kept her going through some very tough times in her life and will stand her in good stead in the future. May I just say, she's my hero!

Holly Post #2

At 32, and as a person who's never been content to simply do what others may think is best, I've learned a lot about how to manage my CF. I would urge you, as moms, to become your child's advocate, studying what is out there, the choices you/he/she have that may improve your child's health and longevity. What follows are tips you might find useful in your own caregiving. If you have questions, please comment, and I'll do my best to answer.

Hypertonic Saline - There are different percentages of dilution, but the key is just to use the highest salinity that your child can tolerate: the saltier, the better. In 2006 I realized that my lung function had dropped slowly but substantially over the course of years. From my high in college, I'd dropped approximately 50 points! I had to fight to be allowed to try it, but the results were phenomenal! In six month's time I had regained 40 points and no longer struggled to clear the sludge in my lungs. That is what I had noticed the most and sought to remedy. I would cough and cough and cough ‘til I could hardly catch my breath, and my head would hurt, and yet, the mucus deep in my lungs - that I could feel there - wouldn't budge... until Hypertonic Saline. You can buy this prepared in different dilutions or you can make your own at home. I've done both. I still use 7% Hypertonic.

Zantac/Prevacid/Nexium (and the like) - In 1991 I was taking 12 enzymes with every meal and still having tummy troubles all the time. (That was back in the day when they just added more & more enzymes.) Then my GI doc prescribed Zantac (That was the new big thing.), and my tummy got better. After my issues resolved, we were able to bring my enzymes down to only six. Over the years as I've gotten on better PPIs, I've been able to bring down my enzymes even further. I now take Prevacid twice a day and only three Creon 24s with meals.

The Vest (of course) - Before the Vest we had manual percussion. My family never had a percussor, and about high school I quit doing the manual treatments. I was swimming lots and competitively and relied on that exercise (which was excellent airway clearance as well as aerobic exercise) solely all through college. I got the Vest in the Summer before I got married. If you have one, you know how wonderful the Hill-Rom Vest people are at making sure you get a Vest no matter what your financial situation is. I have used my Vest faithfully for 12 years now. It is great, because now as a mother in a single-car family, getting to a place where I can swim isn't feasible. And in Texas and Alabama, the heat prevents me from outside exercise several months of the year. Though I do (try to) exercise inside, it is never a replacement for the Vest.

Nutrition - I know that CF clinics talk a lot about calories and fat and vitamins and sodium, and those are good things, but there is a lot more to nutrition than just that. Educating myself has helped me great deal. (I did notice at CFIT this year that the approach was more holistic than in the past and was very pleased). I had been taking iron, ADEKS and calcium for years. Then, I began taking Reliv supplements (a whole-food-based supplement) in 2002, just months after my daughter was born. At that time I was really low, drained physically. I noticed an improvement immediately! Since then, I have continued Reliv and added JuicePlus+ (an organic fruit & vegetable supplement) and have continued to notice improvement over time. In addition to these things I have worked with a Naturopath who has helped me through particular issues and crises of health. I have not used these to replace medications like enzymes or aerosols, I have simply added nutrition therapies. I would love to spend more time on this but maybe I'll save that for another post.

Brovana/Forodil - Beginning in about 2009, I had noticed that my albuterol didn't seem to be lasting very long. After a few hours I felt that I needed another aerosol. My lung function was still good and stable, so I didn't know what was going on. During a hospitalization in February 2011, I was put on Brovana in addition to albuterol. What a difference! I felt like my lungs stayed wide open ALL DAY! Once home I switched to Forodil. The usual way of using these is to alternate treatments with the Brovana and albuterol, but I have found that it works best for me (and the MD approved) to use the Forodil immediately before my albuterol treatment. This has brought me a freedom that I've not had for several years of skipping a treatment occasionally. For some time, I just could not skip a nighttime treatment because I would either not sleep for the coughing and shortness of breath, or I would awaken in the night and have to do the albuterol. And I couldn't skip a morning treatment because I would be so tired and short of breath in tasks and coughing constantly. But, now if I come home late or particularly tired, I just do the Forodil aerolizer and go straight to bed. Or if I have to get up and out early, occasionally I will just do the Forodil and go about my day without struggle. Now, this is only an occasional skip. I still have to be diligent to do full treatments (Forodil, albuterol, Pulmozyme, Hypertonic Saline, and Vest) most mornings and evenings. This allows me a greater freedom in my social life, which is wonderful!

Nutramagen - this is the infant formula I was placed on immediately after diagnosis. As a 7-month old, my major symptom was malabsorbtion. The doctors warned that the formula was terrible tasting and I would probably reject it at first, but I didn't. I took the first bottle, sucked it down, and smiled at it. Problem solved! I quickly began gaining weight and thriving. Of course, that was 1979 and now they have, not only the formula, but enzymes for infants so that they can drink breastmilk or other formulas.

Probiotics - I'm not just talking about acidophilus, though that is certainly better than nothing at all. I'm talking about multiple strains of beneficial bacteria in massive quantities. I like Nature's Sunshine Probiotic 11 and Solaray Multidophilus 12. Over the years antibiotics have become harder and harder on my body, and, if I don't take probiotics with and after my antibiotic rounds, I am miserable. It can take months for my body to recover from the thrush, diarrhea and upset stomach. So while on the antibiotics, I take as much as I can afford, and usually the cheap stuff since I know it's going to get killed off. I also eat live active-culture yogurt by the quart. After I'm off the antibiotics, then I bring in the higher quality stuff and continue eating the yogurt. When things seem to have returned to normal, I scale back to simply taking enteric-coated acidophilus every morning and, usually by this time, I'm sick of yogurt so I take a break.

Neti Pot - I began using a Neti Pot to rinse my sinuses about 5 years ago. After years of chronic infection, inflammation and headaches, I finally broke the cycle. My sinuses took a while to become clear and during this time I rinsed my sinuses (from the left AND right) twice a day. After they became clear, I rinsed only one way once a day and now I only rinse when things become congested. I very rarely have sinus infections now and most days are headache-free. On the rare occassion that I do get an infection, I have been able to treat it at home without antibiotics and have not needed a surgery since using the Neti Pot.

I hope you find this helpful. And, if you find something you're thinking about trying, keep in mind that your doctor may be resistant. Don't just avoid telling him/her. Do your research, think it all through carefully. As I mentioned, I've had to fight sometimes to be allowed to try things that, ultimately, have had a positive impact on my life and health. So, just because you have to be persistent doesn't mean you shouldn't try it!