Our Journey to Sweden for CF Care

I would like to start off by saying that….a blogger by nature I am not. I will do my best to keep everyone up to date on everything that is going on with May and her Swedish treatment, but if I slip, call me on it!!

Okay, the treatments in Sweden are definitely different than here, in all aspects. I have to tell you that I am relaying this in the best of my medical understanding.

Here goes. First of all, DIET, they adhere to a Mediterranean diet and they avoid mucus producing foods for the most parts, ie. dairy. They also consume large amounts of oils. The average individual in Sweden with CF is within the 40-75th percentile of weight. Weight gain is a nonissue there. They do not advise large consumption of animal fats and empty calories in order to achieve a specific caloric intake. While people in Sweden are generally taller than americans, their information is based on BMI which is comparable to our charts.

Maylie living up the last days of the US CF diet!

ARTICLE
Mediterranean Diet and Cystic Fibrosis

Airway clearance is also very different, they do not use “cpt” or the vest. The adhere to a strict exercise regime and have not had cpt as part of their treatment model for over 30 years. Their research has found it to be as effective if not more so than traditional airway clearance. Children begin their treatment on exercise balls (parents bouncing them) and then move up to trampolines and slowly progress into a much more extensive routine. But still it is generally once a day for 15 mins or if battling something, an additional 15 mins at night. We actually have a pulmonologist here in Bozeman that is considering this as a study on this right now.

ARTICLE
Trampoline Jumping- A Fun and Effective Treatment in Patients with Cystic Fibrosis

Then the drug aspect of CF there is similar yet different. They offer Bromhexine as a mucolitic in conjunction with N-acetylcysteine (NAC) . They have pulmozyme but they have less than 1% (I believe) that choose it over Bromhexine. Bromhexine is a drug that has been around since the 70’s. And does not have known toxic levels, so it is much safer for your body. It also costs $400 a year. They use all the same IV antibiotics, but have not found promising results with nebulized TOBI therefore skip right to IVs. Their treatment model is very aggressive, but they also very rarely stay in the hospital for more that a couple of days. Parents are taught the first stay how to administer IV drugs so that the child can have a more “normal” life. They have found that individuals in Sweden who are living with CF suffer from depression at the same rate as individuals without CF and that they state “good quality of life” with the same rate as non-CFers, that is not the case in the US. The rates of depression are actually very startling.

ARTICLE
Care Of Patients With Cystic Fibrosis

They are going to do a five day course on learning to recognize the first signs and symptoms of an exacerbation with me, going over the importance of diet, physiotherapy and home IV treatments. To give you an idea of how early they treat, the doctor that Maylie will see said that he has had less than five kids under the age of twenty that had to have oxygen, in his 20+ years of specializing in CF. He was very distraught that May had been coughing from March until October and that she was not hospitalized only put on rotating TOBI. They just really believe that you have to knock it out as the first symptoms are presented, not wait to see if it is going to manifest into something. Below is the photo of Maylie, two days after her diagnosis, day five of IV TOBI……so incredibly sad, my little peanut looks so unwell.

I swear, this is the look of four days of TOBI, I am posting another picture below of the day before she went into the hospital to prove we are not unfit parents!

Maylie the day before her “asthma” check-up!

Little May- one month before her third birthday. 22lbs.

Sweden has really impressive statistics of life expectancy, PFT scores even with colonized Pseudomonas, they are not nearly as concerned about that as they are about Staph, they believe Staph to be a much more aggressive tissue disease. So, they treat Staph the way we treat Pseudomonas. A convincing quote for me was from the latest CF Roundtable, “A Swedish Care Model: What We Can Learn.” “In Sweden, 30% of CF adults have completely normal lung function, while only 16% of CF adults in the US can say the same. Ten percent of Swedish CF adults have very low lung function, while 20% of US adults fall into this category.” I am trying to get a hold of this article to post on here…..

My father has a wonderful friend who is the German specialist in Thoracic medicine (ie, respiratory, ect) I talked with him, prior to making our plans and he said absolutely would take his child to Sweden if they had CF (over US or Germany). Which further instilled that this actually does make sense. I know that CF is CF no matter where you get treatment, but I feel like if I don’t look around every corner and under every rock to get her what she needs, I will not be doing my job as her mom and her advocate. So, to Sweden we go.

The swedish and american medical models for Cystic Fibrosis vary quite heavily. It is our belief as Maylie’s parents, when comparing models of care, that she will benefit from the more proactive, aggressive and holistic treatment that is offered in Sweden.

I hope that this was a mediocre first blog insertion and was a bit helpful on why we are headed over to beautiful Sweden!

Bon Voyage!!!

I must throw a big thank you out there to a couple folks. First of all the amazing local foundation, the Cody Dieruf Benefit Foundation, Breathin’ is Believin’. They have assisted us with a huge part of our expenses to go to Sweden!! Such a great organization. (They are highlighting Maylie on the homepage!) Also, personally my wonderful parents, my Aunt Sue and Uncle Tom and my mom’s cousin Shirley and her husband Bob. All of you have made this a possibility for Maylie. We are forever grateful.