Friday, January 1, 2010

Full report of Dr Rolle Laser treatment

The Krankenhaus in Coswig is based on an old recuperation hospital for TB patients etc, situated in the forests in Upper Saxony. It is now a modern hospital specialising in pneomo-thorax conditions. It carries out very high tech surgery but its wards retain something of the feeling of a sanitorium or recovery clinic. They are two bed rooms with a few one-bed private rooms. I had one of the latter at 39 euros a day as it was important for Stewart to be able to be with me for as long as possible and I would not have made a good companion for another patient as I can only speak about ten words of German and I snore.

For me the arrival was the only time I felt lost as I had only corresponded with Dr Rolle by email. The best person to talk to before you come to make the admin arrangements is Frau Meissner and she speaks very good English. I did this but on arrival at reception they were not expecting me and didn’t speak much English so I asked for Frau Meissner and was told where to find her; she was extremely helpful. Alternatively Frau Monika Kleiber who works in the admin office in the reception speaks quite good English and is lovely. You have to go to register with her or one of the other staff before they take you to the ward. This includes filling in a lot of forms but they are translated into English.

The rooms are plain but attractive and spotlessly clean; they have a shower, toilet etc. The bed is adjustable for sitting up and has a duvet not blankets etc as in the UK. In the morning if you are fit you are asked to make the bed yourself. It is easy as you just shake your duvet and fold it in half. They do not change the beds daily – maybe weekly. In the mornings and evenings you are asked to take your own temperature and record it; they take your blood pressure and pulse once a day, bring your tablets etc, wish you good night and that is it at the pre-op stage. At night the rooms are dark- you can wind down blinds – and it is very quiet unlike in the UK where lights flash all night and staff go about their business. You are woken at 6.45am and you can dress in ordinary clothes etc.

Outside the rooms on the ward again it is clean and spacious; the doors are all about 1.5 times as wide as in UK. The colour scheme is bright and restful. There is a tea making room with a microwave and an attractive sitting room with high quality furniture, - not a bit hospitally - grouped around coffee tables, and there is a bookshelf and games. It all has an almost folksy feel and tries hard not to be too clinical. I was there at Christmas which helped as there were the usual very classy German decorations. It snowed too!

There is an emphasis on improving lung capacity etc so for me there are three contraptions I have to use regularly; in my room a spirometer; up the hall a machine for breathing in oxygen every hour and downstairs cubicles for breathing in salt fumes twice a day. There is a gym for light exercises which we should attend daily for half an hour.

All of the CTs, xrays and lung function testing are on the ground floor which retains the spacious, colourful non-clinical feel and has very good art on the walls which you can buy so I presume they are exhibitions that change regularly. Your go down by yourself, knock on the door you are supposed to be going to and then wait for just a few minutes. Inside the equipment looks top of the range and all is new and modern. For my CT scan they did it with and without an infusion to show contrasts. I had that done in France too but never in UK. The technicians spoke English or read from a translated sheet sometimes with hilarious consequences.

The food: you are asked to choose from a menu each day. German food itself is an acquired taste and I don’t know it well so cannot judge how the hospital food compared with German home cooking. It was not brilliant and not very healthy but certainly copious amounts and perfectly edible. A large emphasis on meat and sliced sausage. The cucumber and bean picked salad was good. The main meal is at lunchtime and served very early at about 11.30. The kitchen has a microwave so my husband could warm up meals and eat at the same time as me. You can go in there at anytime and make tea, coffee etc.

The nurses: there seem to be two grades of nurses; the ones you see most of are dressed in blue, sometimes with a green flash. They take your meal orders, bring it, measure your blood pressure and prepare you for your operation. Mostly they were male. On my ward there was one called Andreas who spoke excellent English and became “our man” he told us he wanted to become a doctor. The other, Stevan, spoke less English but was charm itself. These nurses went off duty after lunch. The nurses in white were all female and called Schwester, Sister; they were the ones who handed out the medicine and fixed canellas etc. You don’t see much of them pre-operatively; I think two were on duty per day on our 36 bed ward.

The physios: these are very important people and run all of the breathing machines, gym exercises, post operative breathing recovery etc. They seem clued up on the whole process. The one I saw most regularly is Cindy who speaks excellent English. She tells me that its because her brother-in-law is American; my daughter-in-law is French but my French is still woefully inadequate; a different outlook clearly.

The doctors: there are about four that seem to be about on weekdays; they dress all in white like angels; they come in mob handed each morning and just ask how you are but are willing to answer any questions; there is a female doctor who seems to lead them and she is very clued up. She referred to Professor Rolle for any decisions however. He visited me regularly pre-operatvely to discuss the scan and the operation he was happy to answer any questions and to discuss the whole procedure, the German as opposed to the UK system etc. He let me go out to Dresden two days before the op and recommended the sights. He is not aloof in anyway and talks about everyday things happily. I had to sign a paper giving him 4000 of my 11,000 euros but however long I stay and however many mets he finds and zaps it is the same price. He is passionate about his procedure and what it can do for people. They have to write down on a form that they give you exactly what they are going to do, what might go wrong and what they will do if it does. You also sign up for the removal of other things if necessary -in my case lymph node removal if the pathology calls for it. We both sign the form. As I have one quite large lesion it may be necessary to remove a lobe.

The anaesthetist, Jens, is another expert who came to see me two days before the op. He explains the whole anaesthetic procedure in perhaps too much detail! and again writes it down on a form and we both sign it. He laughs and jokes and is very approachable and friendly too. I have to sign a form for 1200 euros for him and that also it turns out comes out of the 11,000 euros. I will have high spine epidural as well as general anaesthetic so that I have no post-operative pain and can do lung exercises and not get pneumonia. I will be on ITU for three days as long as all goes well and will breathe unaided from the start. It is clear that he is in charge of my post-operative recovery; this was the same in France. I don’t know if it is the case in UK as I don’t recall ever having such a long discussion with any professional or feeling part of the process and aware of what would happen.

Once your CT scan has been perused and your condition accepted as operable or resectionable as they call it you spend a day having your lung function and general health tested. This includes: blood tests from your ear to test oxygenation I think, they put on some burny stuff before. You also go into a cubicle with a breathing tube and do various breathing tests: in fast out slow, in slow out very fast and in slow out very slow etc. You have an ECG test, monitors just monitors stuck to your chest , back, arms , legs etc and finally the dreaded cycling test. For this you are decked out in a mask, a blood pressure monitor on your arm and something on your ear where they keep taking blood; you also wear a sort of towel bib supposedly so that your chest doesn’t look too ridiculous while you pedal. They get you to do that keeping the monitor between 60 and 70 and cunningly increase the difficulty as you keep going. You must lift your hand from the handlebar and signal as soon as you start to feel really out of breath or if you legs are about to drop off. Don’t stop pedaling at that stage wait till they tell you too – its not long.

For the pre-operation the day before a nurse came to shave me under the right arm and he looked for any other hairs on my upper body, luckily only found a few on the top of my shoulder. At 17.00 had what they call operation soup and an hour after an enema. I had to pack up all my clothes in my bag and label it and only take nightclothes and soap bag all labelled with my name to the ITU.




Operation day

I was due to have my operation at lunchtime but on the day they brought it forward so I dressed in the operating gown and put on the surgical stockings they gave me. A canella was put into my hand. I was given a premed pill and taken to the operating area at about 8.30. I was wheeled into a small room where a technician did various things, nothing significant but we chatted; he was young and he told me that he was on a form of national service and that later he would train to be a doctor. He had the right grades etc. Jens,the chief anaesthestist who I had met in my room came in and I sat with my back to him while he inserted the epidural channels. He used a local anaesthetic, it was still a little painful when he put the channels in and he had to poke around a bit. I then lay down. He placed a mask just above my mouth not on it and said I would now go out. I presume something was put into my canella but I felt nothing and can remember no sinking sensation.

I woke up 6 hours later although of course it just felt like a minute later. Someone was tapping my face and said it was all over, I asked if it had gone well and what was the time; they said yes very well and told me it was 3.30. They asked if I had pain and I said only in my hips – presumably because I had been in one position for six hours. I jiggled about and that got better. I was in a room with high tech pumps and equipment and with all manner of tubes coming out of me. There were two other stations in the room but they were unoccupied. People came and did things to the tubes on a regular basis, asked if I was OK and I drifted in and out of sleep. Stewart, who had called them at around 3.30 came into see me at 5.00pm and he says I was remarkably alert and we chatted and I checked that he had called everyone he should have. We were told that 35 mets had been removed and that even the largest one had been done by laser not lobotomy. Dr Rolle came later and repeated this news but also told me that he had removed a lymph node and all had gone for testing. He had taken all he could but we all knew that more might arrive so probably some chemo was the next step back in the UK. That was planned for the New Year in any case. The next lung could wait until after that. The openings were all under my right arm a long incision with two drains coming from it. I had a port on my chest for antibiotics etc to be inserted and I was catheterised.

For those of you who aren't squeamish you can watch the procedure on video at http://www.rolleundrolle.at/de-videos.htm It is video number 4 ("Thoraxchirurgie

Stewart left after about two hours and then I just remember sleeping a lot and having my tubes fiddled with. I felt no pain. The mood on ITU was very different of course and the only complaint I had was the noise levels; I expected to be interrupted at various times and have things done to me but the staff did seem to shout and laugh a lot during the night; later in my stay I told them off a little and asked them to keep my door closed and things got a lot better.

Apart from that tiny thing, they were all kindness itself both here and on the main ward. I remember having my hands and arms washed on that first evening and it reminded me of one of the nicest moments of my life, just after Sam was born (first child) when a nurse came and washed my hands with a flannel just like my Mom used to do. There was again a preponderance of male nurses on ITU and very easy on the eye. They did seem to have an obsession with football however so their first question was usually where did I come from and then after the ah yes Birmingham City response, I explained my family supported Aston Villa who also came from there and they were all at pains to tell me that the Villa had beaten Manchester United the night before - is there no escape! There was a doctor who checked on me regularly with stethoscope and people looked at all my readings very regularly. Each morning and evening a portable Xray machine was wheeled in and pictures taken of my lungs. On the day after the operation I was allowed out of bed, just to wash myself while they straightened my bed and I was fed normally. I can remember being amazed at my ability to down a big bowl of pea and potato soup with two large frankfurters on Operation day +1. The rest of the stay remained much the same; there were regular visits from the physio to massage my back with a machine that looked like a sander and she gave me some circulation exercises to do and a sniffing one to open up my diaphragm. I had my own breathing exercise machine which I was to use every hour as on the ward. On Operation + 2 days I was given some tablets to help me cough. I had two every meal time and they did not suit me at all causing severe acid disturbances in my stomach. I asked for them to be discontinued and that was no problem. It did affect my appetite however and made me feel iller than I had up to that point.

Dr Rolle and Jens the chief anaesthetist visited regularly and reported on my progress, I was doing well apparently. Operation + 2 days was Stewart’s birthday, I told the doctors and got them to sing Happy Birthday to him – quite a sight and later that evening Jens bought him a bottle of beer! I had my first and least important drain taken out on that day and was allowed a little walk to the bathroom. The next day I was to leave ITU and gradually all tubes except the drain and the epidural painkilling drip were taken out and I was given a stand to push them around on. I did a bit more walking but it was slow progress; once a bit quicker as I was given an enema in readiness for my life back in normality. Then it was time to move back to the normal ward and I was to walk. I wasn’t feeling great, only the second day on my feet and still a bit queasy from those tablets but I made it half way before they fetched a wheelchair. I had a pretty rough morning back on the ordinary ward but after an hour’s nap bounced right back and recovery was all one way after that. People phoned and were amazed at how strong I sounded. It is Ok to use mobile phones on the ordinary wards by the way.

Recovery for the next two days was just a case of getting used to walking, washing myself, having regular xrays and blood tests; antibiotic infusions etc; food was completely normal as before. Stewart and I developed a good regime of supplementing the German diet with lots of prawns, smoked salmon, tomatoes, fresh fruit and delicious cakes. The doctors looked at my last drain tube regularly and monitored the flow or lack of it and on Operation day + 5 they decided to take it away. A lovely doctor did it and it only hurt as much as pulling off a particularly nasty plaster. The next morning they took off the epidural painkiller and started me on a regime of painkilling tablets which worked extremely well. I was now free of all tubes and drains and could walk around a free woman. It was the weekend so we just kept up the regular breathing exercises and little walks around. Temperatures dropped to – 20 so we did not walk outside. I did become more breathless once the last drain tube was taken out and this did worry me as one of the doctor’s told me that the xray I was to have the next day was the most important as it would show if my lung had completely reflated. I was convinced it hadn’t as I wasn’t breathing very well but I went the next day and within an hour they came to tell me all was well. We discussed leaving as it was by now 21 December. I was resolved not to be home for Christmas and Dr Rolle confirmed this and told me that he would prefer me not to fly and I could probably leave earlier if I didn’t. My son and his wife, Sam and Julie were driving up the next day to spend Christmas with us (all the children were supposed to be coming to visit until Christmas eve but the weather had different ideas and flights were all cancelled). So a plan was set that we would drive home with Sam and Julie Julie is French and so they brought all sorts of wonderful food for our Christmas meal. Once you are fit enough to walk outside etc the staff have no objections to you eating in their guest house( see below) or in local restaurants. You should just discuss the arrangements about getting medication etc with them previously.

Gym exercises after the operation focused on breathing on your operation side; they are done on mats on the floor which I found quite daunting as at the best of times I cannot get up and down easily, but they gave me a stool to lean on and were very understanding. I found these exercises helped the breathlessness.

I left the hospital and returned home two weeks after the operation, for the last five days before I left, I was really just having bed and breakfast at the hospital and spent the rest of the time with my family in the hospital guest house. This was over the Christmas period and we were able to turn it into our own home from home and had a really good time. We also visited Meissen on Christmas Eve ie Operation + 10 days for Gluhwein and hot sausages and to Dresden on Boxing Day for delicious cakes and visits to the Art gallery etc.

On the day I left I had lung function tests and xrays which showed that I was recovering well.

4 comments:

  1. Thank you so much for posting this report!

    This was really interesting and informative.

    I have six very small leiomyosarcoma tumors in my lungs, so I was very interested to hear what this was like for you. Maybe someday I'll be headed to Germany...

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  2. I am glad it went well! Very very interesting. Happy New Year, feel better soon, and here is to fabulous health in 2010! Patti in NY

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  3. Dear Jean,
    Thank you so much for sharing your treatment. Because of you I heard of this surgery and contacted Dr. Rolle. My brother has soft tissue sarcoma and lungs mets. I wish you much health, and a smooth recovery from chemo. God bless you.
    Lucile de Godoy (luciledegodoy@mac.com)

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  4. Thank you for this report. Best of everything to you and yours.

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