Author
Thomas Heimann, as appeared in Alpha1 Journal 1/2024.
I already reported in the last journal about my troubles with the German Federal Pension Insurance Fund, from the application process to the approval of my rehabilitation at the correct facility. Shortly before the editorial deadline, I received an invitation to the Baltic Sea Clinic in Schönberg-Holm (OKLI) for the end of November 2023.
On my doctor's advice, I should avoid visiting such facilities during the 2023/24 flu season to prevent exacerbations. The facility understood this perfectly, and so we discussed postponing the start of my rehabilitation until shortly after Easter. Since the rehabilitation could begin more than six months after the initial decision, the German Pension Insurance (DRV) had to approve the new date. I contacted the same employee I had been in contact with regarding my "lost files at the DRV." This went smoothly and quickly.
So, 13 months after the application was submitted, all the requirements for rehabilitation were met.
Why Ostseeklinik Schönberg-Holm?
There were several reasons for me to apply for my rehabilitation at OKLI:
- Rehabilitation in the mountains is beautiful to look at, but the inclines are almost impossible for me to manage. The harsher climate of the North Sea also doesn't agree with me. So I started looking towards the Baltic Sea.
- During a previous rehabilitation stay in southern Bavaria, I learned what the right sporting activities are for me, as someone with Alpha-1 emphysema, to keep me as fit as possible. Since then, I've been doing regular rehabilitation exercises, so even in a pulmonary rehabilitation facility not specializing in Alpha-1, I can articulate what I need and what's good for me.
- My main diagnostic goal during rehabilitation was to determine whether I might already require supplemental oxygen or not.
- I administer my own AAT substitution and always have everything I need with me. Therefore, there was no discussion about whether and how the supply could be provided at the rehabilitation facility. I had clarified this with the facility beforehand.
- Finally, as an Alpha1 board member, I wanted to find out if there was a rehabilitation clinic in the north, on the Baltic Sea coast, where we Alphas would be well cared for. It couldn't be that it was always concentrated in the south!
So, what was it like at OKLI?
I travelled here in my own car, also to take my bicycle with me.
The welcome at the reception desk was very friendly and warm. It made me feel like I was in a hotel. I was assigned a personal first aider who showed me around my room, explained the mailboxes, the clinic's wayfinding system, and the meal plan, giving me a good initial orientation. As soon as I was in my room, I went for my initial examination, followed by a consultation with the doctor. It was very thorough! They discussed my current status with my condition and my goals for this rehabilitation program. All of this culminated in my individualized therapy plan, which was then stored in the system and accessible to all doctors and therapists.
All rooms had either a small terrace or a balcony. A television on the wall, a chair, an armchair, a bed, a large shower room, and plenty of closet space made me look forward to the coming weeks.
Impressions
The restaurant truly lived up to its name. A generous breakfast and dinner buffet, along with a lunch menu served at the table, restored a distinct hotel atmosphere. Guests were even welcome to fill their own thermos mugs with coffee.
Therapy planning at OKLI was similar to that in other rehabilitation facilities. There was a mailbox where appointments and treatments for the following day were listed each evening. Conversations with other patients made it clear that everyone seemed to have their own individual plan.
In addition to the treatments, sufficient rest and relaxation periods were also ensured. At the beginning of rehab, it can seem as if too little is happening. This is probably necessary to allow you to unwind from your daily routine. In the second and third weeks, I then had a significantly more intensive therapy program.
Those who wanted to do more than their prescribed therapies could take advantage of the free time in the evenings at the gym and swimming pool. The location near the Baltic Sea, with the beach just 700 meters away, made for pleasant and relaxing walks. Well-maintained bike paths along and on the dike allowed me to enjoy longer bike rides with sea views. During my stay, guided bike tours were offered on weekends, providing information and insights into the Probstei region northeast of Kiel – not just for e-bikers. Highly recommended! Bicycles could be rented on-site. For those with their own bikes, there was a large shelter with electrical outlets for chargers.
My conclusion after three weeks
Those who are already familiar with their condition and their AATD (acute and progressive hypertension) and primarily want to get fit for the coming period through physical activity or recover from recent exertion will find this facility a good fit. Depending on their prior knowledge, they can also attend the usual theoretical and background events on COPD, social services, severe disability, pension issues, etc. Newly diagnosed individuals with AATD who may require further diagnostic testing or therapeutic adjustments should consult their primary care physician beforehand to carefully determine whether all necessary measures are possible at the OKLI (Open Clinical Rehabilitation Center). This, however, applies to all rehabilitation programs.
One more thought on substitution:
I keep hearing in our organization that facilities involved in substitution therapy try to avoid administering these procedures whenever possible. Sometimes, the reason given for refusal is that it's a blood transfusion, for which they aren't equipped. In my opinion, that's simply not true!
AAT is a medication administered intravenously. Any rehabilitation facility that draws blood can also administer it intravenously.
Anyone wishing to avoid this discussion could consider bringing their own medication for the planned rehabilitation period and discuss it with their family doctor. Then, only the administration of the medication would need to be coordinated.
