Overcoming CF

 

I was born in 1980 with the worst type of Cystic Fibrosis. In 1986 I had 14% lung capacity and my mother was told it would only get worse. Today I have 85% lung capacity and am practically without symptoms. How did we make it? This is my story.

 

 

My family background

My parents separated when I was six days old. I grew up with my mother, in Palma de Mallorca, Spain. Raising a child as a single mother is hard, extra hard if there is no financial support and one does not have a stable income. My mother is an architect and she had to work hard in order to provide for me – and my medical needs.

 

Gloomy early years

I had my first hospitalization when I was a month old. The CF diagnosis came in 1982, when I was two. Prognosis: I wouldn't live past the age of five. I have papers stating the disease I had was "genetic, progressive, and irreversible" ie, I was born with it, it would get worse and worse, and there was no way back. There are different degrees of Cystic Fibrosis, and I had the worst type, with problems with my pancreas (digestive system at large), lungs, sweat glands, tears, saliva, liver...

There’s not much you can do with only 14% lung capacity (FVC levels). Even laughing is a major effort. When I was at home, I lived between the bed and the couch. As the scientist she is, my mother stated she would only give up once she had tried every possible remedy, so she searched and investigated. She took me to visit specialists in many countries, both those working with traditional medicine as those working with alternative or non-traditional medicines.

In 1982 a Unicist homeopath saw me in Argentina, and thanks to his treatment I stopped sweating profusely at night (I used to leave the sheets covered with salt powder).

1985 I was doing really bad. I had become colonized with multiresistant Pseudomonas aeruginosa, while visiting the Ramón y Cajal hospital in Madrid. No antibiotics worked for these nasty bacterias. When my mother asked if she could perhaps take me to USA to see if they knew any solutions, the doctor replied “Sure, you can take her to Disneyworld ." There was not much else to do, according to what they knew. I had three months to live, as long as my heart could resist beating at 180 beats per minute.

My Swedish grandmother put paper slips with my name in the altars of the Lutheran churches. The monks of the Niño Dios abbey in Entre Rios, Argentina, prayed for me while they sung Gregorian chants. Jewish friends of my mother put my name in the synanogues, and LDS friends put my name in the eight LDS temples then in service. The power of prayer of so many hundreds of people in so many languages made the miracle: as they use to do in Heaven, when we ask for a solution they give us the tool.

 

What we did

That was when the turning point came. In early 1986 we heard about Elke Erdmann, a “Heilpraktiker” (naturopathic doctor) working in Hamburg, Germany. She used homeopathy and Reiki, a Japanese healing system that had fairly recently arrived to Europe. There we went, not speaking German and with very little money.

Elke treated children together with their parents, stating that young children used the energy of their parents, so if the parent was less than perfectly healthy (which almost nobody is), it was harder for the child to improve. She therefore treated us both. When we returned to Spain three weeks later, I had improved from 14 to 24% lung capacity. That may not sound much, but I could laugh and walk again, and was looking much better.

My mother learned 1st degree of Reiki (the Usui System of Natural Healing) in March 1986. She started treating me, and when I turned seven, in 1987, I learned myself: every person must take care of their own healing process. I just put my hands on myself, and let the energy of universe flow to me. If had a stomach ache, I would put the hands on my belly. Whenever I had to take antibiotics, we did Reiki on the bottles/tablets to remove their negative side effects. I was never "feeling low" because of the antibiotics!

I must point out that although we tried multiple alternative systems, we never dropped traditional medicine.

I kept improving. About a year later, 1989, my liver was working well.

In the meantime, antibiotics were developed, that worked for CF (and the Pseudomonas). In 1988 I went to Sweden (Lasarettet hospital in Borås) in order to receive my first IV treatment (my dad’s family, with which we had kept in touch, are all Swedish). There, at the hospital, I was taught to be responsible for my own disease. They instructed me on how to practice physiotherapy (“lung gymnastics”), organize my medication, and even self-administer the antibiotic into my vein, pushing the syringe the nurse had prepared.  

Trip to Disneyworld, December 1988, now that I could actually walk around (eight years old).

In 1990, antibiotics arrived to the hospitals in Spain, and I started receiving treatment in my city, at the Son Dureta hospital. That was positive, so we didn’t have to rush abroad when I got worse.

As I stated, we tried many things. While keeping with Reiki (mom learned 2nd degree in 1987, and I learned it myself in 1991) we also experimented adapting our diet in different ways. I had sporadic treatment sessions of many types, but with little improvement with any of those – we were always trying to see if we could fit at least a fragment of the great puzzle. Of course I made sure to eat a balanced diet, with multiple vitamin supplements. Lysozyme and “Wobenzymal” (a compound of enzymatic action on bacteria) helped when I had trouble. Also Echinacea drops, which helped with infections when there were no antibiotics. More recently, I've been taking Echinacea+Goldenseal+Elderberry when my caughing gets worse, coupled with vitamin C - this generally stops the cycle before I get to the point of needing antibiotics. And if I get to take them (tablets, most usually), I've been adding probiotics to help my system recover.

I've been told chronic sinusitis is the rule in CF. I had some trouble with it until I started rinsing my nostrils with a "lota," a device of Arabic origin that helps you rinse with warm, salty water. This cleanses very well, and I haven't felt the influence of sinusitis since I started on it (some time in the middle 90s, I think).  

I was overall improving. That is, I had reverted the trend. My lung capacity kept steadily going up. I was digesting well, had normal weight, and a glorious mane of hair. I was living a fairly normal life, going to school, and being happy overall.

A bump on the road was in 1994, when I was 13. We had been told the change to “become a woman” was particularly dangerous in CF. I was growing fast, and my body was concentrating on developing rather on fighting infections (the Pseudomonas had stayed for good). I was hospitalized for almost three months in a row, and antibiotics were not working. When antibiotics don't work, it’s like being in the middle ages: you can die of any flu. I got a Port-a-cath, which was fantastic, because I didn’t have any more veins in my arms. They put the Port-a-cath on top of my thigh, in order to enable me to keep on receiving clapping on my chest. I was also happy to avoid scars on the neckline. And I could take care of the medication myself, having both hands available, and the needle inserted “on my lap” so it was very convenient.

I had all the symptoms indicating I was just about to get my menstruation for the first time. But the doctors decided on giving me massive doses of antibiotics coupled with cortisone. I was told that, having been given so many hormones, I would surely not have my period in at least a year. Yet the doctors did not realize we had been doing Reiki on the cortisone tablets before taking them: side effects removed, one month after I stopped taking them I had my period.

I came out from the bump, and kept improving and looking healthy and normal. By 1995 I had 80% lung capacity. The doctors all thought it was strange, amazing, that I had been so bad, and was doing so well. I was still kept with my regular treatment: Pancrease and vitamin supplements, Ventolin and inhaled antibiotics (since 1994, it was Colistin) twice a day. Soon Pulmozyme would be added to that.

But being hospitalized for three months, when your mother has to stay with you (and awake) at all times, has its problems. Not only did we lose our friends, but also our home.

 

School and College

My mother had been told, when I was little, that in order to avoid the potential risk for infections, I shouldn‘t be in groups of more than 10 children. Where can you find a school with such small classes? Fortunately, there was a Swedish school in Palma de Mallorca - and I had Swedish family, so I qualified. In my tiny school, they also accepted the fact that I missed class fairly frequently. I was very bright, and got good grades in spite of not attending regularly.

In such a small school, I could not study Natural Sciences high school (Swedish high school programs are oriented towards specific fields), and I wanted to become a dietitian, so we had to move. We ended up in Madrid, where the Scandinavian school was considerably larger (full 100 students between ages 3 and 19! I was terrified. So big!).

We were a little concerned about Madrid, since it has a dry climate. As a child I had been told humid would be best for me, and Mallorca, being an island, in indeed humid. But far from getting worse, the dry air of Madrid (and its pollution, I joked) were good to me. My health was better, and I was happy that I rarely missed class anymore.

I remember the day I told mom, fairly concerned, that something odd was going on with my mouth: I had liquid in it! I was used to having a dry mouth, so having saliva was a new experience. Mom reassured me I wasn’t sick, and we celebrated the improvement.

I graduated from high school in 1998, with the best grades of my class (of four - ehem), speaking Spanish, Swedish, and English fluently, and German less fluently. I had finished in time, despite a demanding syllabus and a hospitalization, missing a total of two months that school year. Then I went on studying in preparation to take the very demanding national pre-university exam “Selectividad.” By then I had decided I wanted to become an actress, and started studying for the entrance exams to drama school. But my brain was very tired from the mental efforts, and a psychologist friend of ours recommended I took a year off. So I did, and studied Italian in the meantime. That was my fifth language.

In 1999, my Port-a-cath was removed. It hadn’t been needed in over a year, and it was giving me some trouble. Since then, I believe I’ve only had IV treatment two or three times (the last was in fall of 2003). When I was switched from the children’s section in La Paz hospital to adult’s, I had a lung capacity of 102% (over the theoretical value). The CF doctor of adults said if I had lived on to adulthood and was doing so well, I’d die of anything but Cystic Fibrosis. She stated I could consider myself a normal person and lead a normal life. I could even have children – as long as I warned them beforehand, so they could do a thorough follow-up of my pregnancy. I was ecstatic!

That year, 1999, I applied for RESAD (Royal Superior School of Dramatic Arts) in Madrid, but not for acting, rather playwriting with critique and research. This school was even larger, ay me, full 500 students, scary! I was so used to small groups... It was fun but there was a problem: people smoked. Almost everybody smoked. We managed to ask my classmates and teachers not to smoke in class, but they would smoke in the halls and the cafeteria, which looked like London with its fog. I couldn’t escape the smoke, and at the end of the first school year my lung capacity had dropped to 80%. By the second year, it had dropped to 60%. My mom had an earnest talk with me, asking me if I really wanted to study at that price: doing the math, I would not make it through the four years. We decided it was best to quit.

So in 2001 I started working full-time as a freelance translator: Swedish and English into Spanish. Perfect job: I could work at home. I even had a translation job once, which I did with my IV on my hand. And it worked just fine. By the way, it was around this time when I decided to quit Ventolin, since I perceived it did no good to me, and I felt so shaky afterwards, with an increased heart rate.

I kept doing Reiki, and my lung capacity started recovering, but very slowly. In November of 2003 it was 71%. By then I had been persuaded to go back to college. The problem was, everybody smoked in Spanish colleges back then. So I applied to Brigham Young University in Provo,  Utah. Due to the Honor Code, no students or faculty were allowed to smoke (neither in the premises nor outdoors). Perfect! I was not aware of the inversion problems of Utah Valley, though, nor did I know about them until 2006 – had I known, I would perhaps have changed my mind about going, which I think would have been a mistake. Talk about dry climate! The dry Madrid was very humid compared to this. This was a school with 30,000 students! That was indeed scary...

My doctors were not happy, I must say, about my leaving for 8 months at a time. They usually saw me every three months. On the other hand it is not usual to find CF people (at least in Spain) wishing to continue studying. The general attitude is "I'm a sick child, I’m going to die soon anyway, so you take care of me.” I found extraordinary support at the hospital in Madrid, both from doctors and staff. The pharmacy made it possible for me to go, giving me those 8 months of medication at once. A miracle.

So I started studying again. Then our financial situation, which was shaky but recovering from the blow of 1994, took a turn for the worse. Fortunately, I was getting very high grades, and I was granted full tuition. So I kept on studying, and improving health wise, in spite of the strains of college and multiple extracurricular activities. Not satisfied with going to a college with high academic demands and studying in my third language, I got into the Honors Program. And I was happy as ever. For the first time in my life, I had a large group of good friends. Moreover, I was studying French and Biblical Hebrew and having the time of my life. In spite of the dry climate, I was using tear drops only when wearing contacts, and then needing less and less. My tear secretion were also getting normalized!

After Christmas 2005 I got a severe cold, and was coughing like a dog. My mother, very concerned (thinking also we could not possibly pay for a hospitalization in the US) asked me to go home. Which I did, although reluctantly: I deferred winter semester of 2006 and took six months off.

When I came back to Utah in the summer of 2006, I decided to check out the University of Utah hospital in Salt Lake City. It’s always good to get second opinions, I thought – maybe there was something I could add to improve my general condition. I was amazed at the quality of the service. They were very helpful. That’s when I started breathing in hypertonic saline solution (7%, twice a day). I improved and was happy. I only went to see them twice, though, and noticed they also were pushing to see me every three months (why so much control? Come on, I was doing great, said rebellious me).

I noticed it was the second year in which I started to feel much worse around November. That’s when I found out about inversion. It seems it’s really bad in Utah Valley. But I wasn’t the only one suffering from it: I could see healthy classmates and teachers panting, too. Come February 2007 I started feeling much worse. I was concerned. I stayed a week in bed (missing class for the first time in my degree). Then I had a wonderful friend who started driving me to class, so I didn’t have to go uphill. I was pushing it, I knew, but I had to graduate! I improved a little with the good spring weather, but I was still unwell. Yet my lung capacity, which had been up in the 80s (percent), was only down to the seventies, so why did I feel so much worse? I was out of breath for any small effort!

I graduated with my BA in Linguistics, minor in Scandinavian Studies, Cum Laude with University Honors. It seems fairly unusual (I was the third in the recorded history of BYU, I was told) to be an international student, with a disability, graduating with University Honors and a Latin Distinction as well. They made articles about me on the university’s homepage and in the local newspaper, and had me speak briefly on the radio. I was feeling timid and reluctant to talk openly about my condition, particularly when almost nobody had known about it over the previous three years. Only the teachers who needed to know, and my roommates (I had to explain those huge amounts of medicines I had taken with me). But I accepted to tell my story, so it would give hope to other people fighting severe diseases.

And that is why I am telling it in this website too. Over the past few months I have heard of several cases of people dying with CF. I was never raised as somebody who was going to die – in fact, I was always focused on improving. My mother had left her work as an architect in order to teach the Usui System of Natural Healing (Reiki) which we realized was what had made all the difference. I keep feeling better and better, and when I read reports about what CF is supposed to be like, it doesn’t sound like anything related to me.  

    

With my mother. Graduation on April 2007, Cum Laude and wearing the medal of University Honors (26 years old).

 

The latest piece of this story happened the summer of 2007. I went to Sweden and the flying company lost my luggage – with the nebulizer in it. And my bag didn’t show up in five days! I was surprised, since I had sent Reiki to the trip (fun stuff you can do with 2nd degree) so these things generally don’t happen, unless it’s for some good reason. So I arrived in Sweden with no spare clothes – had to borrow and buy some – but I was happy to be there and went on walks in the forest with my family. I was amazed that I was breathing so well, no being out of breath at all. "The air in Sweden must be great," I thought. Then my luggage arrived, I took my first dose of Colistin, and was immediately panting as I had been before. Two plus two: it was the antibiotic, that I had been breathing since some 13 years ago, the one that was causing all this trouble! I had turned intolerant to it. I would never had blamed it on Colistin, had I not been 5 days off it, and I never would have, had my luggage not gotten lost. I was thankful, and reassured that my CF was not worse: it was only the stupid medicine's fault.

Back home (in Mallorca again, not Madrid anymore), I talked to my new doctor in Son Dureta hospital and explained I was quitting Colistin. I had already had trouble with Tobramicin in the past so I couldn't take Tobi. We therefore agreed I would take Azytromicine tablets (500 mg three days a week) and quit inhaling antibiotics. I am therefore currently breathing only saline solution and Pulmozyme and I’m feeling better than ever!

This week I had the results of the latest batch of check-up tests. My lung capacity (FVC) levels are of 85% with an FV1 of 72%. My oxygen levels in my finger are 99%!! I am taking only 3 Pancrease a day (one per meal) and keep a normal weight. The gastric doctor stated I am “asymptomatic” and the lung doctor says I’m doing overall very well, particularly compared to other CF patients of my age. Particularly the clinic (how I looked and felt) was extremely good.

 

If you are concerned about CF, either for yourself or a family member, never give up hope! When doctors say something is incurable, it only means they don't know how to cure it. While traditional medicine has no cure for this disease, uniting it to alternative medicine techniques, particularly Reiki, can radically improve your condition. My mother has around 30 medical doctors among her students, and very many health practitioners (nurses, physiotherapists, osteopaths, and so forth). Reiki is accepted in the state hospitals of Hamburg (Germany) since it has been proven that broken bones heal in about a week and people with chemotherapy don’t loose their hair or have to throw up. Many hospitals in England and the US are offering Reiki treatments to their patients, who are improving much faster. Several Spanish hospitals are now offering it too. I've recently discovered that Reiki has been used successfully with CF in many places of the world (particularly Australia and New Zealand, it seems).

A word to the wise: in recent years, Reiki has become popular, and many unqualified people are both teaching and working with it. Reiki is a patented system with very specific characteristics – if all of the 9 points are not met, it is not the same energy. I am saying this, because I would hate you to go and try it and have very little results and then blame it on Reiki, when in fact you should blame the person who was doing something else and calling it Reiki. There are about a thousand masters in the world who belong to The Reiki Alliance (http://www.reikialliance.org), and you can probably find qualified people close to you.

Sincerely,

Carina Klemetz

October 2007  

Ps. If you have any question, feel free to send me an email to lklemetz AT yahoo DOT es and I'll be happy to answer it for you, the best I can.

 

I recently noticed the articles written about me for graduation are online. The girl who wrote the BYU article about me said:

To read more about her trials and triumphs: http://byunews.byu.edu/archive07-APR-gradfeature.aspx  For more media coverage: http://www.heraldextra.com/content/view/219097/ 

January 2007:

In early November I reached a milestone in my healing process, which has maintained: 100% oxygen saturation levels in my finger! I had never had that before and I am really happy about it. 

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