Through the wonders of modern technology I've been able to write this post on my phone, just round the corner from St George's Hospital over a lovely late lunch. There is something somewhat ironic about a 4 hour round trip for an appointment that lasts around 20 minutes. I spent longer eating a very tasty (and hot) curry in the cafe!
I saw the lymphodema nurse and she was lovely. I think it would be nice if they had some extra information or advice post surgery - I had expected it would make a difference to the appointment, but I don't think it really did. I don't think I was sufficiently clear with her that it was Dr Gordon's recommendation that I wear my compression 24:7 for six months, not Professor Schmeller's as she said she didn't think that was quite necessary, and she didn't talk at all about the best compression to sleep in.
It was reassuring to have someone looking at my legs, and being happy with their healing - in that it looked OK as you can't really remember the exact look of someone's legs from months ago when you see them day in and day out, so I didn't expect her to notice the change!
I've lost just around 1kg post surgery (taking me from 63.x to 62). The nurse described that as my weight staying the same whereas I prefer to think I've lost weight!
She said my upper thigh measurements were basically the same, but my calves were smaller than they were a few months ago. She thought my compression was helping move up fluid but I wondered if the surgery had improved my flow by removing some of the pressure on the lymphatics from the knee up? I'll be very curious to see how my measurements change by my next appointment. my husband pointed out that as they only measure up to the groin, it misses the difference up my outer thighs towards my bum, where my flanks look different. It was strange that as I've lost my inner knee pads, that she considered my measurements to be similar around the knees - although as 1kg less is the same there may be some small differences that count as "consistent".
I asked if I could use my camera to photograph the sheet so I have the measurements for me to compare myself to. They were 17 points up my leg, taken by marking what looked like equal distances with a ruler - I must ask what the gaps between measurements are for me to check at home.
She has prescribed me some open toe (OT) tights in the same size and style I was wearing pre-surgery. It took me a while in the appointment to say that they weren't very strong and point out that I'd gone from EU class 1 to UK class 2 when she put me into the Sigvaris Diaphane, so I hadn't gone up in actual mercury measurements. She then said it would be better to have me in German tights and she only had me in French tights because that was what I was prescribed before I saw her (which made no sense to me!). So she's ordered me a pair of closed toe (CT) Veni - I think, hard to read sideways ;) - in a dark brown, for me to try. She said I can buy more if I like them.
The service is very efficient at St George's as the compression is ordered for you and posted to your home so I'm now watching the post box all week! I'll let you know what I think of the Veni - and I guess I should try the Diaphane again and see if they make me itch as much as they did the evening I tried them post surgery... for about 20 minutes!
Thursday 31 March 2016
Saturday 26 March 2016
Week 4 update
My MLD has really helped get rid of the bruising and reduce the lumps. There is hardly any bruising to be seen any more - pretty amazing when it is only 25 days since I had surgery. The thigh lumps are still present but it took my MLD lady some more work to locate them by my second MLD of the week! They are a lot smaller and no where near as tender as the first time she worked on them. I wouldn't have had the confidence to knead them personally so I'm happy she did it - an extra reason I'm happy to be having the MLD.
I've got two sessions of MLD booked for this week coming, and an appointment with St George's! I'm looking forward to getting measured and seeing if my compression needs changing. I'm not sure what they are going to recommend as I did try my Diaphane tights which they'd prescribed for me last time, but they made me feel so itchy on my post surgery skin that I barely lasted minutes in it.
I've been taking my ETO compression off to wash and dry overnight, but I decided I didn't want to sleep without any compression so I've been alternating my pair of Solidea Silver Wave (very low UK class 1 compression - but they still mark me with wavy stripes by morning!) and my Made to Measure Sigvaris Comfort footless tights. The comfort tights are very soft and comfy but are a bit hot around the groin for sleeping in. I prefer to sleep in the silver wave as they are quite airy and comfy.
Pulling up either pair of tights makes me realise how much more stretchy my ETO compression is, and how much more comfortable it has been to get on over my post surgery tender and bruised areas. I feel very sorry for ladies whose surgeons put them in normal compression tights and leggings. I find my ETO comforting to put back on and very supportive.
Last week I managed to remove the waist extension strip so I'm down to the smallest hook setting on the garment - feeling really happy about that as a sign of swelling reduction :)
I've got two sessions of MLD booked for this week coming, and an appointment with St George's! I'm looking forward to getting measured and seeing if my compression needs changing. I'm not sure what they are going to recommend as I did try my Diaphane tights which they'd prescribed for me last time, but they made me feel so itchy on my post surgery skin that I barely lasted minutes in it.
I've been taking my ETO compression off to wash and dry overnight, but I decided I didn't want to sleep without any compression so I've been alternating my pair of Solidea Silver Wave (very low UK class 1 compression - but they still mark me with wavy stripes by morning!) and my Made to Measure Sigvaris Comfort footless tights. The comfort tights are very soft and comfy but are a bit hot around the groin for sleeping in. I prefer to sleep in the silver wave as they are quite airy and comfy.
Pulling up either pair of tights makes me realise how much more stretchy my ETO compression is, and how much more comfortable it has been to get on over my post surgery tender and bruised areas. I feel very sorry for ladies whose surgeons put them in normal compression tights and leggings. I find my ETO comforting to put back on and very supportive.
Last week I managed to remove the waist extension strip so I'm down to the smallest hook setting on the garment - feeling really happy about that as a sign of swelling reduction :)
Friday 25 March 2016
Week 4 - return to exercise
My first proper exercise other than walking since surgery was a gentle badminton practice on day 21. I think my balance was better so I'm thinking that might be because my knees have had their inner fat pads removed, so are able to move better.
I really enjoyed the exercise. I've been feeling a bit looser in that I can pull my knees up higher (but not as high as they would naturally go pre-surgery as the backs of my thighs feel tight and a painful pulling sensation as I get my knee high towards my chest). I'm also able to lie on both sides but it still feels tender lying on them - no surface bruising but they still feel sore when I put weight or pressure on them.
I've been a bit more tender this week. I don't know if it is being back at work every day, driving, moving around, or just natural healing. I've also been really tired in the evenings so am happy about the public holidays this weekend - but not about the clocks changing and stealing an hour of my sleep!
I followed up the success of badminton by going bowling - the surgery hasn't improved my game! Although my outer thigh became tender from my arm repeatedly rubbing against it with the ball in hand, I didn't need any pain relief and was fine in the car afterwards.
The day after bowling I felt really stiff walking around, but so did my hub so maybe we are just getting a bit old! The back of his thighs hurt too so I'm thinking it might be unfamiliar form of exercise rather than my surgery!
The day after bowling I felt really stiff walking around, but so did my hub so maybe we are just getting a bit old! The back of his thighs hurt too so I'm thinking it might be unfamiliar form of exercise rather than my surgery!
Wednesday 16 March 2016
Week 3 day 15 - 18
Today during my MLD I pointed out that I'm developing a hard lump in one inner thigh. My therapist then found a smaller lump on the other side, slightly further round. I blamed the groin edge of my garment for causing it, as the groin is open so I have elastic seamed edges that can drift a little down my inner thighs.
She worked on the lump by hand, sort of kneading at it and said that made it softer. It hurt when she did it but I don't want a visible lump or a lump I can feel that may be a future problem so I'm happy to take the pain of being kneaded.
I could see the lump - well a dimple next to it - on my inner thigh, so I sent an email to Hanse checking up on it, plus my feedback that I'm still slightly dripping after a shower from my stubborn left knee incision. It is the tiniest amount of leakage but frustrating to find I can dab my knee with gauze after a shower and see a bead of red liquid.
Dr Baumgartner emailed me back to say I'm looking good, it's all normal and that I can apply a new strip to that knee, pulling the incision together a bit tighter when I apply the strip to encourage it to heal. Hub and I didn't understand we could pull the edges like that - feel a bit daft as we wanted to, but thought we shouldn't!
Bruising is looking better, but still present.
By my second MLD of the week my thigh lumps were definitely softer and smaller. The massaging of them really helped. It wasn't as painful having them massaged the second time.
I also removed strips from the dry incisions (after the photos were taken), following Dr Baumgartner's reassurance. Can't wait for the knee to heal so I can lose the last one!
End of week photos... drumroll...
She worked on the lump by hand, sort of kneading at it and said that made it softer. It hurt when she did it but I don't want a visible lump or a lump I can feel that may be a future problem so I'm happy to take the pain of being kneaded.
I could see the lump - well a dimple next to it - on my inner thigh, so I sent an email to Hanse checking up on it, plus my feedback that I'm still slightly dripping after a shower from my stubborn left knee incision. It is the tiniest amount of leakage but frustrating to find I can dab my knee with gauze after a shower and see a bead of red liquid.
Bruising is looking better, but still present.
By my second MLD of the week my thigh lumps were definitely softer and smaller. The massaging of them really helped. It wasn't as painful having them massaged the second time.
I also removed strips from the dry incisions (after the photos were taken), following Dr Baumgartner's reassurance. Can't wait for the knee to heal so I can lose the last one!
End of week photos... drumroll...
Tuesday 15 March 2016
Compression
I was already wearing compression before I had my surgery, and I expect to wear compression afterwards, for the rest of my life (as medical science/technology currently stands).
Hanse-Klinik generally recommend that you wear compression after your surgery for 24 hours a day (other than washing it and you) and then in the daytime only for the next 3 weeks. This means that one month post surgery they believe you would be able to stop wearing compression - and keep it off provided you don't see changes or feel better for wearing it.
In my case, my lymphoscintigram results (I had the test pre-surgery as part of my NHS lipodema care) indicated that my legs were already not functioning as effectively as the average person. They were slower, or more sluggish, at circulating my lymph fluid. They were not so slow that surgery was advised against, and there were no clinical signs of lymphodema (I am still symmetrical so neither leg is visibly that much bigger than the other, and I am negative for the Stemmer sign - which is described about half way down this page). They indicated that I was more likely to have lymphodema or lipolymphedema than just lipodema, but it isn't possible to say whether I was born this way or whether my lipodema has already affected my lymphatic functioning.
Because this impaired lymph circulation places me at higher risk of lympodema, St George's (where I have my NHS care) want me to continue with wearing compression, regardless of how I look or feel after surgery. I definitely have to do this whilst awake - the question is whether I'm safe to sleep without it or not. Opinions vary so for now I'm taking Professor Schmeller's advice and trying a few nights without it.
Compression classes mean different things depending on where you live. The compression measurement is taken from the ankle in leg garments and the compression reduces from that point up the leg, to encourage flow up to the lymph nodes and reduce pooling. Compression is measured in mmHg or millimetres of mercury.
The differences mean that a UK class 2 equates to an EU/RAL class 1.
The following information is taken from Daylong (an online seller of compression garments by private and NHS prescription):
UK Class 1 14 - 17 mmHg
EU Class 1 18 - 21 mmHg,UK Class 2 18 - 24 mmHg US Class 1 15 - 20 mmHg
EU Class 2 23 - 32 mmHg UK Class 3 25 - 35 mmHg US Class 2 20 - 30 mmHg
EU Class 3 34 - 46 mmHg US Class 3 30 - 40 mmHg
Source: Daylong
Hanse-Klinik generally recommend that you wear compression after your surgery for 24 hours a day (other than washing it and you) and then in the daytime only for the next 3 weeks. This means that one month post surgery they believe you would be able to stop wearing compression - and keep it off provided you don't see changes or feel better for wearing it.
In my case, my lymphoscintigram results (I had the test pre-surgery as part of my NHS lipodema care) indicated that my legs were already not functioning as effectively as the average person. They were slower, or more sluggish, at circulating my lymph fluid. They were not so slow that surgery was advised against, and there were no clinical signs of lymphodema (I am still symmetrical so neither leg is visibly that much bigger than the other, and I am negative for the Stemmer sign - which is described about half way down this page). They indicated that I was more likely to have lymphodema or lipolymphedema than just lipodema, but it isn't possible to say whether I was born this way or whether my lipodema has already affected my lymphatic functioning.
Because this impaired lymph circulation places me at higher risk of lympodema, St George's (where I have my NHS care) want me to continue with wearing compression, regardless of how I look or feel after surgery. I definitely have to do this whilst awake - the question is whether I'm safe to sleep without it or not. Opinions vary so for now I'm taking Professor Schmeller's advice and trying a few nights without it.
Compression classes mean different things depending on where you live. The compression measurement is taken from the ankle in leg garments and the compression reduces from that point up the leg, to encourage flow up to the lymph nodes and reduce pooling. Compression is measured in mmHg or millimetres of mercury.
The differences mean that a UK class 2 equates to an EU/RAL class 1.
The following information is taken from Daylong (an online seller of compression garments by private and NHS prescription):
UK Class 1 14 - 17 mmHg
EU Class 1 18 - 21 mmHg,UK Class 2 18 - 24 mmHg US Class 1 15 - 20 mmHg
EU Class 2 23 - 32 mmHg UK Class 3 25 - 35 mmHg US Class 2 20 - 30 mmHg
EU Class 3 34 - 46 mmHg US Class 3 30 - 40 mmHg
Source: Daylong
Monday 14 March 2016
Week 2 (days 12-14)
My other week 2 post seemed to be getting long.
Day 13 I tried getting up around six to wash my compression and then dry it. With hub needing to shower too it didn't seem to save me any time. I have therefore taken it off tonight to wash in the machine and will hang to dry overnight. I feel sad that this means I can't sleep in my compression but to get back into the office I can't be lying in bed working whilst my garment dries.
My stubborn left knee incision had a tiny spot on the overnight plaster pre-shower but was leaking slightly after the shower when I pressed it with a gauze square. I covered it with another plaster but then when I went to MLD I removed the plaster to check and found it was clean (and there were no drips when I pressed a gauze on after MLD) so I left the plaster off after MLD. I'll be interested to see what happens after tomorrow's shower.
MLD therapist worked my bruises some more, so hopefully they will continue to fade. I found the MLD very relaxing all over, not just on my legs.
I'm able to lie more easily on my sides but still have bruising and discomfort. The main nuisance is that I can't get my legs bent up high. So eg to paint my toe nails or pull my legs right up on the sofa feels like a tearing muscle pain on the underneath of my thighs. I feel like the old joke:
Patient: 'Dr it hurts when I do X'
Dr 'then stop doing it!'
I am able to bend my legs and sit with them quite bent - I then worry about the compression restricting circulation behind my knees so move as soon as I realise.
I can run up stairs but it feels wobbly and uncomfortable so I prefer not to.
Hoping for confidence in being ready to swim by the end of the week maybe?
Day 13 I tried getting up around six to wash my compression and then dry it. With hub needing to shower too it didn't seem to save me any time. I have therefore taken it off tonight to wash in the machine and will hang to dry overnight. I feel sad that this means I can't sleep in my compression but to get back into the office I can't be lying in bed working whilst my garment dries.
My stubborn left knee incision had a tiny spot on the overnight plaster pre-shower but was leaking slightly after the shower when I pressed it with a gauze square. I covered it with another plaster but then when I went to MLD I removed the plaster to check and found it was clean (and there were no drips when I pressed a gauze on after MLD) so I left the plaster off after MLD. I'll be interested to see what happens after tomorrow's shower.
MLD therapist worked my bruises some more, so hopefully they will continue to fade. I found the MLD very relaxing all over, not just on my legs.
I'm able to lie more easily on my sides but still have bruising and discomfort. The main nuisance is that I can't get my legs bent up high. So eg to paint my toe nails or pull my legs right up on the sofa feels like a tearing muscle pain on the underneath of my thighs. I feel like the old joke:
Patient: 'Dr it hurts when I do X'
Dr 'then stop doing it!'
I am able to bend my legs and sit with them quite bent - I then worry about the compression restricting circulation behind my knees so move as soon as I realise.
I can run up stairs but it feels wobbly and uncomfortable so I prefer not to.
Hoping for confidence in being ready to swim by the end of the week maybe?
Costs
I know one of the first questions is what will this cost, so I've tried to capture the costs I've incurred.
Pre-surgery consultation
You have to have a face to face meeting before your surgery. The consultation is very thorough and diagnostic (see my post for more info) and lasts over an hour. The fee is a flat fee, however long you talk.
If you have the consultation on a separate date to your surgery that will be another set of travel costs, obviously.
Surgery costs
The biggest cost is the surgery itself. Hanse publish their prices openly and will give you an idea by email how many surgeries or areas you need.
You'll need to stay in the clinic for one night after your surgery
Hanse will provide you with a compression garment, the price varies depending on your body locations. I had an ETO garment - really good and comfy
Pre-surgery consultation
You have to have a face to face meeting before your surgery. The consultation is very thorough and diagnostic (see my post for more info) and lasts over an hour. The fee is a flat fee, however long you talk.
Consultation 75€
If you have the consultation on a separate date to your surgery that will be another set of travel costs, obviously.
Surgery costs
The biggest cost is the surgery itself. Hanse publish their prices openly and will give you an idea by email how many surgeries or areas you need.
My surgery (3 regions in one session) 4050€
You'll need to stay in the clinic for one night after your surgery
Night in clinic 180€
Hanse will provide you with a compression garment, the price varies depending on your body locations. I had an ETO garment - really good and comfy
My ETO compression garment 275€
Travel costs
Travel costs to Hanse-Klinik depend on your choice of airline and travel methods in Germany (train, taxi or hire car).
My flights for two of us were around £200
The train from Hamburg to Lübeck was 14€ each for a one way second class ticket.
Trains 28€
We came back to the airport by taxi on a cheap rate organised and booked by the clinic (I'm sure they could do a pickup too).
Taxi 75€
Accommodation in Lübeck the night before surgery. The cheapest place is next door in the Traveller. As it was full we stayed in a hotel in town for 80€ a night and my husband also stayed there the night I was in the clinic. We spent 3 nights in Lübeck and one in Hamburg as we made a holiday of our trip so I preferred being in town to walk around.
2 nights of hotel costs (the minimum we'd needed) 160€
UK airport parking or pickup costs - we got dropped off and picked up as we were worried about me walking around to our car (or leaking in it!) or discomfort waiting and catching the bus
In pounds sterling this all came to around £5,000
Post surgery costs
You might need or want to buy some extra dressings and/or tape etc.
extra plasters and tape £30
Manual Lymphatic Drainage
I'm having twice weekly MLD sessions for 4 weeks at £55 per one hour massage. This was recommended by Professor Schmeller so should be built into your plans.
4 weeks MLD £440
MLD (Manual Lymphatic Drainage) and SLD (Self Lymphatic Drainage)
You'll need to find a therapist to give you manual lymphatic drainage massages (MLD) for around a month after surgery. I'm going twice a week as recommended by Professor Schmeller and wish he'd recommended three times as it feels so good!
I went to see an MLD practitioner before surgery and had a couple of massages, to ensure I liked her and would want to have post surgery treatment with her. I also figured having a well drained lymph system pre-surgery sounded a good idea, so I had one close to my trip to Hanse.
There are official qualifications in MLD. Vodder training is most common in the UK I think (and the one that Professor Schmeller was happy my lady has). Lymphatic specialists are DLT (decongestive lymphatic therapy) Members of the MLD UK body. The MLD UK website has a page where you can find a local therapist and filter to Member DLT only.
Professor Schmeller recommended I waited a week to settle before starting massages so I would book at least that date in with your therapist/check the notice they need to organise your appointments.
My massages cost £55 each and last around 1 hour. The therapist is paying particular attention to my bruises and I was amazed that in the first session she gave some effort to my big cannula bruise in my hand and it vanished very soon afterwards! I think the MLD is really helping speed up my healing and it feels great :)
I also asked if she would teach me some SLD techniques as I was given a handout by St George's at my first NHS appointment with them and told that it is a good thing to do to yourself, but I feel it is hard to learn a self massage technique from a sheet of paper. My therapist is happy to work through it with me so I become competent. It might have been good to do that before going for surgery.
I went to see an MLD practitioner before surgery and had a couple of massages, to ensure I liked her and would want to have post surgery treatment with her. I also figured having a well drained lymph system pre-surgery sounded a good idea, so I had one close to my trip to Hanse.
There are official qualifications in MLD. Vodder training is most common in the UK I think (and the one that Professor Schmeller was happy my lady has). Lymphatic specialists are DLT (decongestive lymphatic therapy) Members of the MLD UK body. The MLD UK website has a page where you can find a local therapist and filter to Member DLT only.
Professor Schmeller recommended I waited a week to settle before starting massages so I would book at least that date in with your therapist/check the notice they need to organise your appointments.
My massages cost £55 each and last around 1 hour. The therapist is paying particular attention to my bruises and I was amazed that in the first session she gave some effort to my big cannula bruise in my hand and it vanished very soon afterwards! I think the MLD is really helping speed up my healing and it feels great :)
I also asked if she would teach me some SLD techniques as I was given a handout by St George's at my first NHS appointment with them and told that it is a good thing to do to yourself, but I feel it is hard to learn a self massage technique from a sheet of paper. My therapist is happy to work through it with me so I become competent. It might have been good to do that before going for surgery.
Sunday 13 March 2016
Things to do before surgery
Because I had my consultation the day before surgery, my preparation was based on email exchanges with Hanse and my reading online. I hope having everything in one place might help someone:
Clothing
Work out your clothes for travelling/early days. if you are having lower legs you might find your feet swell or are padded, so might need a larger size shoe/hard soled slipper.
In the clinic you won't need to take a nightdress as you sleep in their garment (well I did!). Keeps your own clothes clean from leaks and as they gave me a clean garment at some point, it seemed that they expected me to stay in their garment and dressing gown. I had spent ages combing shops for a suitable nightdress to wear there instead of my PJs!
I made sure I had a stash of baggy jogging trousers and tunic tops/loose nightdresses so I had no elastic or tight seams on my bruises.
Surgery shopping
I made a list of the things I purchased. I would also book a supermarket delivery or kind friend to get you fresh food and tasty meals when you get home. I didn't want to go walking around the supermarket on my first day home and hub and I felt better about him being home with me instead of out shopping.
MLD
Find your therapist, decide if you want a massage pre-surgery to see if you get on, and then book in your first session for the week after your surgery.
Pre-surgery blood tests
Hanse will ask for a set of pre-surgery blood tests to be done. If you aren't in Germany around 2 weeks before your surgery you'll need to get your GP or hospital consultant to organise these via the NHS or find a private provider like BUPA. My experience of this was that it took some organising.
Home prep
Make the bed with your waterproof sheet before you leave to save an annoying job when you get back. I had to find another duvet and get hub to change the bed the night we flew back. That wasn't popular! Also (if you share a bed with a partner) work out where they are sleeping for the first few nights so you can get all that bedding ready too. I had got home before I realised I didn't want to risk leaking on my good cream bedding!
Regular towels are likely to be fine - I got only a little drip of fluid on mine and was washing them regularly to keep down on transferring any infection from my morning showers.
Think about where you are going to sit. I put a blanket on the sofa with pads ready so I could collapse when I got home without worrying.
My carpets and flooring were fine. The only time I dripped anything like I did in the clinic was after a shower in the first two days, so if you don't want to risk staining your bath mat use another puppy/incontinence pad as a mat to get onto for drying yourself and changing your dressings. I stood on these until I was sure I was clean.
Packing/Travel plans
I didn't consider eurostar, I guess it would be a very long journey to drive all the way. We booked flights to Hamburg then took the train to Lübeck. You could hire a car, we just didn't plan on travelling outside the two cities and thought it seemed easier.
Consider if you are taking carry on only or checking in a bag. Because we managed to pack light and go carry on only, I had to ensure I was aware of the security rules on 100ml max size liquids. This affected my toiletry packing.
Clothing
Work out your clothes for travelling/early days. if you are having lower legs you might find your feet swell or are padded, so might need a larger size shoe/hard soled slipper.
In the clinic you won't need to take a nightdress as you sleep in their garment (well I did!). Keeps your own clothes clean from leaks and as they gave me a clean garment at some point, it seemed that they expected me to stay in their garment and dressing gown. I had spent ages combing shops for a suitable nightdress to wear there instead of my PJs!
I made sure I had a stash of baggy jogging trousers and tunic tops/loose nightdresses so I had no elastic or tight seams on my bruises.
Surgery shopping
I made a list of the things I purchased. I would also book a supermarket delivery or kind friend to get you fresh food and tasty meals when you get home. I didn't want to go walking around the supermarket on my first day home and hub and I felt better about him being home with me instead of out shopping.
MLD
Find your therapist, decide if you want a massage pre-surgery to see if you get on, and then book in your first session for the week after your surgery.
Pre-surgery blood tests
Hanse will ask for a set of pre-surgery blood tests to be done. If you aren't in Germany around 2 weeks before your surgery you'll need to get your GP or hospital consultant to organise these via the NHS or find a private provider like BUPA. My experience of this was that it took some organising.
Home prep
Make the bed with your waterproof sheet before you leave to save an annoying job when you get back. I had to find another duvet and get hub to change the bed the night we flew back. That wasn't popular! Also (if you share a bed with a partner) work out where they are sleeping for the first few nights so you can get all that bedding ready too. I had got home before I realised I didn't want to risk leaking on my good cream bedding!
Regular towels are likely to be fine - I got only a little drip of fluid on mine and was washing them regularly to keep down on transferring any infection from my morning showers.
Think about where you are going to sit. I put a blanket on the sofa with pads ready so I could collapse when I got home without worrying.
My carpets and flooring were fine. The only time I dripped anything like I did in the clinic was after a shower in the first two days, so if you don't want to risk staining your bath mat use another puppy/incontinence pad as a mat to get onto for drying yourself and changing your dressings. I stood on these until I was sure I was clean.
Packing/Travel plans
I didn't consider eurostar, I guess it would be a very long journey to drive all the way. We booked flights to Hamburg then took the train to Lübeck. You could hire a car, we just didn't plan on travelling outside the two cities and thought it seemed easier.
Consider if you are taking carry on only or checking in a bag. Because we managed to pack light and go carry on only, I had to ensure I was aware of the security rules on 100ml max size liquids. This affected my toiletry packing.
Saturday 12 March 2016
Week 2 (days 9-11)
Feels like I'm really racing along now. Still got some black bruising along with the yellow but definitely noticeably reduced pain when I lie on my sides. I can't sleep on them but can roll towards my sides for a little while. Sitting on hard seats is still tender, but all these experiences are noticeably better than a week ago.
Faint sharpie marks are still visible on the tops of my thighs as the bruising fades. I have tried gently rubbing with soapy hands but that makes no difference at all. I've not yet wanted to use a flannel or anything else to rub harder! My daily shower has been a pleasure not a discomfort this week, and the last few days I've been able to soap over all my bruises without wincing.
I had my second MLD on day 9 - really energised me and felt so good when she worked over some of my bruising. Now I've had surgery I really feel the MLD does me good and I leave the session looking forward to the next one (Professor Schmeller recommended two a week). Between the MLD and the compression my overall bruising and tenderness is really reducing.
I felt I went backwards on day 9 as I had a long evening of meetings (and drove the car for the first time) and when I got home I had leaked quite a bit from two incisions, and had taken ibuprofen as I was in so much discomfort/pain sitting around. Hub thinks that my replacement of two "brown strips" over those incisions was more of the problem, as one strip seemed loose but pulled the clot out of the incision when I replaced it.
I rested up for the morning on day 10 as I had another long evening out on my feet and a long car ride. I got home to find I was looking great - one incision dry and the other just spotting. That was a real boost as I had imagined a repeat of my leaking from the night before. The long car journey (several hours) was uncomfortable by the end and I was tender going over speed bumps!
I had a mini dance around the bathroom this morning, to the radio. I was just so happy in the sunshine, with my healing, with having gone ahead with surgery, I just felt lifted. Still the slightest leaks on my last plaster (I only stop plastering an incision after a day of clean plasters) but the spots are getting less and less so I'm getting somewhere.
I was told by Hanse I could take my compression off at night after week 1. I've not done that so far, instead I've been washing it early in the morning and then having a lie in before/after my shower whilst it dries. I'm finding that takes ages and when I go back to the office next week I can't see how I'm going to fit that into my routine. I'm not sure I want to spend all night without it, so I'm going to have to make a new plan. I see St George's at the end of the month for a compression check so I'm not sure if it makes sense to buy a new garment before then or wait.
I find wearing the garment fairly comfortable so I'm happy to give it some more wear to support my tissues and hopefully speed up my bruise/internal healing. Professor Schmeller said I would harden temporarily as I go through weeks 2-4 - I can't say I feel harder. I do feel that my outers are a little swollen, but I'm still getting used to having a depression on my side where my bum and hips meet, so maybe I'll stay like I look now?
Faint sharpie marks are still visible on the tops of my thighs as the bruising fades. I have tried gently rubbing with soapy hands but that makes no difference at all. I've not yet wanted to use a flannel or anything else to rub harder! My daily shower has been a pleasure not a discomfort this week, and the last few days I've been able to soap over all my bruises without wincing.
I had my second MLD on day 9 - really energised me and felt so good when she worked over some of my bruising. Now I've had surgery I really feel the MLD does me good and I leave the session looking forward to the next one (Professor Schmeller recommended two a week). Between the MLD and the compression my overall bruising and tenderness is really reducing.
I felt I went backwards on day 9 as I had a long evening of meetings (and drove the car for the first time) and when I got home I had leaked quite a bit from two incisions, and had taken ibuprofen as I was in so much discomfort/pain sitting around. Hub thinks that my replacement of two "brown strips" over those incisions was more of the problem, as one strip seemed loose but pulled the clot out of the incision when I replaced it.
I rested up for the morning on day 10 as I had another long evening out on my feet and a long car ride. I got home to find I was looking great - one incision dry and the other just spotting. That was a real boost as I had imagined a repeat of my leaking from the night before. The long car journey (several hours) was uncomfortable by the end and I was tender going over speed bumps!
I had a mini dance around the bathroom this morning, to the radio. I was just so happy in the sunshine, with my healing, with having gone ahead with surgery, I just felt lifted. Still the slightest leaks on my last plaster (I only stop plastering an incision after a day of clean plasters) but the spots are getting less and less so I'm getting somewhere.
I was told by Hanse I could take my compression off at night after week 1. I've not done that so far, instead I've been washing it early in the morning and then having a lie in before/after my shower whilst it dries. I'm finding that takes ages and when I go back to the office next week I can't see how I'm going to fit that into my routine. I'm not sure I want to spend all night without it, so I'm going to have to make a new plan. I see St George's at the end of the month for a compression check so I'm not sure if it makes sense to buy a new garment before then or wait.
I find wearing the garment fairly comfortable so I'm happy to give it some more wear to support my tissues and hopefully speed up my bruise/internal healing. Professor Schmeller said I would harden temporarily as I go through weeks 2-4 - I can't say I feel harder. I do feel that my outers are a little swollen, but I'm still getting used to having a depression on my side where my bum and hips meet, so maybe I'll stay like I look now?
Tuesday 8 March 2016
The true beginning of my journey?
It was pointed out to me that people with stage 1 lipodema, like I have, are not as obviously affected as people with lipolymphedema (stage 3). So, how did I know I had the condition and why did I seek treatment at this stage?
I grew up knowing my mum had something wrong with her, but it took a very long time to be diagnosed as lymphoedema. In lymphoedema your lymph system is compromised so lymph fluid ends up going out into your tissues instead of moving properly through your body. There it makes the limb bigger and is full of tasty food for infections. There is very little that can be done for lymphodema, no cure, but it can be managed - generally managed better the earlier it is identified. Organisations that represent people with lymphodema can also cover lipodema as there is a relationship between them. I am also a member of the Lymphodema Support Network and you can find out more about both conditions on their website.
Lipodema is a painful tissue disorder, with a genetic cause so it runs in families (manifesting in women). The condition was discovered around 75 years ago but is still very under researched and poorly understood. There is very little treatment for lipodema either.
When Mum was advised she had lipolymphedema, not just lymphodema, we started to learn about the lipodema that led to swelling in the tissues that compromised her lymph system. Lipodema is an abnormal fat deposit, not removed by dieting and not caused by overeating. You can be obese and have lipodema, or you can be a normal weight, or underweight, and still have it. The faulty fat cells therefore aren't removed by dieting as they aren't normal fat. As I read the information about the condition on the website of the charity Lipoedema UK I realised I was saying "yes, yes" as I read down the list of symptoms.
As I knew how badly affected my mum had been, I arranged a private consultation with Dr Kristiana Gordon who runs the NHS team at St George's who are the leading UK NHS specialists in lipodema, thanks to her mentor Professor Peter Mortimer. I wanted either reassurance I didn't have lipodema, or confirmation of my fears so I could start treating it as quickly as possible.
Dr Gordon confirmed I did have stage 1 lipodema from my hips down to my knees (this makes me a type 2 for the people who count types and stages) with some early signs in my upper arms of lipodema developing. I later had a lymphoscintigram carried out which showed that the lymphatics in my legs were not working properly, which meant I am more likely to have underlying lymphodema or lipolymphedema already. It isn't yet possible to tell if I was born with a compromised lymph system or my lipodema has already caused that internal damage to my lymph system. I have not currently got any visible clinical signs of lymphodema - neither Dr Gordon, her team at St Georges or Professor Schmeller at Hanse-Klinik could detect any lymphodema. Professor Schmeller thinks I may be lucky and have latent lymphodema at this time.
My lymphatic functioning in my legs is still sufficiently effective that Dr Gordon considered I could go ahead with liposuction surgery, but if it continued to worsen I would reach the stage she wouldn't recommend it. Dr Gordon reminded me that lipodema is progressive and affected by hormonal changes, so I didn't need to rush into surgery, but, like all other chronic conditions, no-one has a crystal ball so no-one could tell me when or if this would happen.
Luckily because I am under a consultant for a different health condition already I was able to get referred into St George's on the NHS, so they can monitor me and prescribe the compression I will need to wear every day for life. I am very happy with their support and care, and have got used to going everywhere with my beloved funky Lakeland rubber gloves so that I can pull my compression tights up properly.
I grew up knowing my mum had something wrong with her, but it took a very long time to be diagnosed as lymphoedema. In lymphoedema your lymph system is compromised so lymph fluid ends up going out into your tissues instead of moving properly through your body. There it makes the limb bigger and is full of tasty food for infections. There is very little that can be done for lymphodema, no cure, but it can be managed - generally managed better the earlier it is identified. Organisations that represent people with lymphodema can also cover lipodema as there is a relationship between them. I am also a member of the Lymphodema Support Network and you can find out more about both conditions on their website.
Lipodema is a painful tissue disorder, with a genetic cause so it runs in families (manifesting in women). The condition was discovered around 75 years ago but is still very under researched and poorly understood. There is very little treatment for lipodema either.
When Mum was advised she had lipolymphedema, not just lymphodema, we started to learn about the lipodema that led to swelling in the tissues that compromised her lymph system. Lipodema is an abnormal fat deposit, not removed by dieting and not caused by overeating. You can be obese and have lipodema, or you can be a normal weight, or underweight, and still have it. The faulty fat cells therefore aren't removed by dieting as they aren't normal fat. As I read the information about the condition on the website of the charity Lipoedema UK I realised I was saying "yes, yes" as I read down the list of symptoms.
As I knew how badly affected my mum had been, I arranged a private consultation with Dr Kristiana Gordon who runs the NHS team at St George's who are the leading UK NHS specialists in lipodema, thanks to her mentor Professor Peter Mortimer. I wanted either reassurance I didn't have lipodema, or confirmation of my fears so I could start treating it as quickly as possible.
Dr Gordon confirmed I did have stage 1 lipodema from my hips down to my knees (this makes me a type 2 for the people who count types and stages) with some early signs in my upper arms of lipodema developing. I later had a lymphoscintigram carried out which showed that the lymphatics in my legs were not working properly, which meant I am more likely to have underlying lymphodema or lipolymphedema already. It isn't yet possible to tell if I was born with a compromised lymph system or my lipodema has already caused that internal damage to my lymph system. I have not currently got any visible clinical signs of lymphodema - neither Dr Gordon, her team at St Georges or Professor Schmeller at Hanse-Klinik could detect any lymphodema. Professor Schmeller thinks I may be lucky and have latent lymphodema at this time.
My lymphatic functioning in my legs is still sufficiently effective that Dr Gordon considered I could go ahead with liposuction surgery, but if it continued to worsen I would reach the stage she wouldn't recommend it. Dr Gordon reminded me that lipodema is progressive and affected by hormonal changes, so I didn't need to rush into surgery, but, like all other chronic conditions, no-one has a crystal ball so no-one could tell me when or if this would happen.
Luckily because I am under a consultant for a different health condition already I was able to get referred into St George's on the NHS, so they can monitor me and prescribe the compression I will need to wear every day for life. I am very happy with their support and care, and have got used to going everywhere with my beloved funky Lakeland rubber gloves so that I can pull my compression tights up properly.
Pre-consultation blood tests
You'll need to have some blood tests done and send the results to Hanse-Klinik around 10-14 days before your surgery.
I ended up being late sending my results as my first set of tests had some problems and I had to repeat them at the request of my GP surgery. The results were available to my GP within 2 days but it took me a few days to get the information because they wanted me to speak to someone about my one abnormal result.
You will either be able to get your GP to request these (the list is a fairly standard pre-operation set of blood tests) or have to find a private clinic such as BUPA, where I heard it can cost up to £200. If you have any care for your lipodema from a lymphodema nurse or consultant then they may be able to help you with getting the blood tests too.
Make sure you sort out how you are getting these around a month in advance, to ensure you get the results in time.
I was lucky that because I had recommendations to have surgery at Hanse from my NHS consultant, I was able to get these blood tests done via my GP surgery, but I did have to put in some extra work to get the actual results printed out so I could scan them back in to send to Hanse.
I ended up being late sending my results as my first set of tests had some problems and I had to repeat them at the request of my GP surgery. The results were available to my GP within 2 days but it took me a few days to get the information because they wanted me to speak to someone about my one abnormal result.
You will either be able to get your GP to request these (the list is a fairly standard pre-operation set of blood tests) or have to find a private clinic such as BUPA, where I heard it can cost up to £200. If you have any care for your lipodema from a lymphodema nurse or consultant then they may be able to help you with getting the blood tests too.
Make sure you sort out how you are getting these around a month in advance, to ensure you get the results in time.
I was lucky that because I had recommendations to have surgery at Hanse from my NHS consultant, I was able to get these blood tests done via my GP surgery, but I did have to put in some extra work to get the actual results printed out so I could scan them back in to send to Hanse.
Things you might need: supplies
The clinic gave me a big bag of dressings, injections, antibiotics etc to bring home, but there were a few other things I needed:
- Waterproof bed sheet. The "puppy pads" the clinic gave me worked fine but because they are loose pads, they can move as you wriggle in your sleep. The sheet I got was from Ikea and was called Gokart. Ikea do home delivery, but I got one from Ebay for the same overall price. I really didn't want to stain the bed so this made me feel a lot safer and has been comfortable to sleep on as it has a fabric top over the plastic.
- Extra dressings. I was changing my plasters each morning and night, and I used all the massive stash I was given by Hanse, and still was wet. I ordered some more of the ones the clinic gave me from ebay, but I was able to get similar ones in the chemist for 20p each whilst I waited for my package to arrive.
- Vinyl gloves. These kept DH from transferring germs to my open wounds when we changed dressings. Sadly his hands are bigger than mine so the gloves that fit me are tight on him!
- Painkillers. I was given a strip of ibuprofen and paracetamol for the travel home. I continued to take them for a few days or painful activities so it is worth ensuring you've got them in the house.
- Rubber gloves with grip or gloves with silicone dots on them (if you are new to compression). You'll need to adjust your compression garment and I find these gloves from Lakeland (also available on Amazon) look cute and are helpful for grabbing wrinkles and pulling up or smoothing out bunching.
- Clothing. loose tops, thick socks and baggy trousers. Needed for coming home from the clinic and for lounging around at home. As I didn't have my lower legs done I fitted into my regular shoes and slippers just fine.
- Flip flops. It was better to have those in the clinic for putting on and walking around after surgery instead of my fabric slippers as they could be rinsed clean if I got drips on them or splashed them. They were easier than slippers to take on and off as I could just slide my feet in and out as I got in and out of bed. If the weather was warmer they'd have been sensible for wearing in transit, but not in Germany at the start of March!
Things I got but didn't really need:
- Extra puppy pads/stay dry bed pads. I got a bag from Amazon for around £10, which meant I was more relaxed about popping one on the floor to change my dressings, on the seat under me, fresh ones in bed etc. It turned out that the clinic were right and they'd given me enough, but being able to throw them around the place was very reassuring in the first two days so I think the peace of mind was worth it.
- Extra tape. The clinic gave me two reels but I panicked when I'd used one sticking on lumps of gauze in the first few days. As the tape was silky and so much nicer than papery tape, I ordered the same tape from ebay.. then the next day I was dry enough to go to plasters only. Should have had more faith.
- Shewee/Go girl. I got one for around £10 then forgot to pack it. The first night it would have really helped. By the time I got home I could pull my garment down to use the loo, so it would have been in the first list if I didn't forget it
- Rubber toilet seat ring. Again probably would have been great on surgery day as that was very painful to sit down. I did use it for a few days at home (got a cheap one like a hot water bottle for around £10 on Amazon) but as it was filled with air I found it wobbled so was a good exercise for my core muscles to try and sit on it! I gave it up within a day or so.
Things you might need: EHIC & Travel Insurance
I agonised about travel insurance, then decided it sounded too hard to get insurance when I was going for a medical procedure, so I decided not to do anything risky in my free time and keep my fingers crossed I didn't fall and break something.
What I did do, was renew my EHIC or European Health Insurance Card. That means you get treatment for the same price as a local. There are dodgy links so to be sure I got to the right government page I went via MoneySavingExpert http://www.moneysavingexpert.com/travel/free-ehic-card, where you can also find out more about what an EHIC is. There is an NHS page on German healthcare, if you want to check up in advance the details of what the EHIC provides.
The form takes only a few minutes to fill out and the plastic card came within a week.
The EHIC doesn't affect the price Hanse charge, so they didn't need to know about it.
What I did do, was renew my EHIC or European Health Insurance Card. That means you get treatment for the same price as a local. There are dodgy links so to be sure I got to the right government page I went via MoneySavingExpert http://www.moneysavingexpert.com/travel/free-ehic-card, where you can also find out more about what an EHIC is. There is an NHS page on German healthcare, if you want to check up in advance the details of what the EHIC provides.
The form takes only a few minutes to fill out and the plastic card came within a week.
The EHIC doesn't affect the price Hanse charge, so they didn't need to know about it.
Day 7 - can't believe it already
I feel like the week has flown past. In some ways I'm grateful to be here tonight instead of back in my bed at the klinik, and in others the days seem to be flying past so fast that I can't believe it was a week ago.
The bruising came out more on day 2-3 and quickly started to yellow (apparently wearing the compression speeds it up). Very few of the dark bruises are really that painful, although I still have a couple of spots that are very un-fun to accidentally poke.
I'm able to walk around pretty normally, can rush up stairs and around the house but still find putting weight on my outer thighs/hips painful. I can't sleep on my sides yet, but I haven't needed painkillers all day. I'm not pain free but it is low level and occasional - unless I try to balance on either side. Sitting on hard seats is still a bit uncomfortable but nothing compared to how sore it was on day 2-3. I can also comfortably work with a laptop on my legs, with or without a tray.
I think around day 4-5 I really turned a corner and have been bounding along in my recovery since then. I'm looking forward to my next MLD (Professor recommended two a week) and hoping I soon get to the stage of all incisions drying up. I've got one thigh one and both knees still leaking into their plasters so sadly not ready to go full just brown strips, or to see all incisions are closed.
I have emailed the Professor to see if I can now remove the brown strips from the apparently dry incisions and hope to have his advice tomorrow.
I also need to decide if I'm going to try removing my compression at night. He said I could do that from the end of week one, but I'm waiting for some more reassurance as I'm conscious that following my disapointing lymphoscintigram that indicated I had compromised lymph function in both legs so was more likely to have primary lymphodema or lipo-lymphedema (despite the lack of clinical visble signs), Dr Gordon recommended I should be conservative and wear my garments 24:7 for six months. Decisions, decisions!
The bruising came out more on day 2-3 and quickly started to yellow (apparently wearing the compression speeds it up). Very few of the dark bruises are really that painful, although I still have a couple of spots that are very un-fun to accidentally poke.
I'm able to walk around pretty normally, can rush up stairs and around the house but still find putting weight on my outer thighs/hips painful. I can't sleep on my sides yet, but I haven't needed painkillers all day. I'm not pain free but it is low level and occasional - unless I try to balance on either side. Sitting on hard seats is still a bit uncomfortable but nothing compared to how sore it was on day 2-3. I can also comfortably work with a laptop on my legs, with or without a tray.
I think around day 4-5 I really turned a corner and have been bounding along in my recovery since then. I'm looking forward to my next MLD (Professor recommended two a week) and hoping I soon get to the stage of all incisions drying up. I've got one thigh one and both knees still leaking into their plasters so sadly not ready to go full just brown strips, or to see all incisions are closed.
I have emailed the Professor to see if I can now remove the brown strips from the apparently dry incisions and hope to have his advice tomorrow.
I also need to decide if I'm going to try removing my compression at night. He said I could do that from the end of week one, but I'm waiting for some more reassurance as I'm conscious that following my disapointing lymphoscintigram that indicated I had compromised lymph function in both legs so was more likely to have primary lymphodema or lipo-lymphedema (despite the lack of clinical visble signs), Dr Gordon recommended I should be conservative and wear my garments 24:7 for six months. Decisions, decisions!
 |
| Not looking too bad this morning |
 |
| Nice straight inner legs free from lipodema tissue |
 |
| Mixed fading and deeper bruising |
 |
My most sore outside thigh |
Why I chose Hanse-Klink
I was very influenced in my choice of surgeon by the recommendation of Dr Gordon as she is the lead for the Lipodema service at St George's. I have found her very committed and I trust her very much. She did say that there are UK clinics I could go to, but that Germany has more years of expertise and that Hanse are very specialised in Lipodema.
Germany is very affordable compared to UK pricing. I have paid 5,500 euro to have surgery on three regions of my legs, a consultation with the Professor for several hours, a night in the clinic, my compression garment, and have been given a sack of supplies and contact details for follow up calls/emails. UK prices I am aware of were closer to £7,000 plus.
When I looked into the Hanse-Klinik and other surgeons I decided that there were a couple of factors that were important to me in selecting where I would have surgery:
Germany is very affordable compared to UK pricing. I have paid 5,500 euro to have surgery on three regions of my legs, a consultation with the Professor for several hours, a night in the clinic, my compression garment, and have been given a sack of supplies and contact details for follow up calls/emails. UK prices I am aware of were closer to £7,000 plus.
When I looked into the Hanse-Klinik and other surgeons I decided that there were a couple of factors that were important to me in selecting where I would have surgery:
- Specialism. I felt someone who specialised in lipodema would have more chance of great results as they had done this so many times before.
- Significant experience. I didn't want someone new to treating lipodema.
- Experience treating stage 1 and younger patients. In Germany there is far more diagnosis and treatment so I felt a German doctor would have treated more people in a similar physical condition to me,
- Clinical data. I wanted to be able to read published papers, that had made it into a journal so had been subject to some level of external scrutiny. This was important to me to show that the surgeon was reputable, and also that they did have good follow up data... and had done some follow up/reflective practices. I liked that Hanse listed their publications on their website, and that there was a range of them by different people over time.
- Reputation. I wanted someone other people recommended.
- Price was a factor in that I would have had to think seriously if I had been quoted costs like some people who are paying over £10,000 to £20,000 plus. To be fair they are generally more advanced than me, so that was another reason to treat early.
I felt very lucky that when I emailed Hanse-Klinik not only were they willing to treat me but I was treated by the leader Professor Schmeller. He has over 14 years experience operating on lipodema patients and he and Dr Baumgartner etc have done multi-year follow ups on their patients.
All their clinicans (at the time of writing Professor Schmeller, Dr Baumgartner and Dr Frau Frambach) are very personable and committed, so I would be happy to be treated by others in the team in future.
Travel tips: Returning to the UK after surgery
I booked an afternoon flight to the UK. I was cleared to leave the clinic around 8am (and had to leave my room at 10). The clinic booked me a taxi to the airport for 75 euro as I was worried incase the train was busy or I was unable to cope moving around. I think I would have been OK on the train and would have liked that I could have stood up to move around any time I wanted to. It was a nice drive through small towns and places, not the motorway type journey I imagined, and took around 1 hour 15 minutes I think.
I had been advised by other ladies to book a wheelchair at the airport. At Hamburg we had lots of time so walked through the airport ourselves. There are quite a few shops and places to eat if you arrive early.
I booked wheelchair assistance at Heathrow - easy to book online if you have a BA account. I was met from the plane door and wheeled to an electric cart. I did tell the man I thought I could walk to the cart but he insisted. The cart drove us from the plane to the arrivals hall so we didn't have a long immigration queue to stand in, nor to have to catch the internal train from the B gate we arrived at, back to the main terminal 5 building.
I recommend the electric cart to save so much walking. I thought I was ok but would have been tired.
In the cars to and from the airport (Hamburg and UK) I asked to have the seat in front put as far forward as possible to maximise my foot room and leg comfort.
No-one at airport security was interested in my bag of dressings and my 4 injection needles with the fragmin/heparin for blood clotting. They were more interested in the big stash of Neideregger marzipan we'd purchased as presents as marzipan seems like an explosive on an x-ray! I had put the letter from Professor Schmeller in the bag with the needles and dressings but it might be better to put in a pocket as when I went through the scanner I got pulled aside and patted down/talked to because all the padding came up on the screen. I explained they were bandages and got asked why, so you might like to wave the clinic letter. The lady was fine - I offered to show her my bandages but she wasn't keen ;) and it was literally a few minutes of conversation and a gentle pat.
The bag of dressings was an ok size to carry on (open topped, a fancy carrier bag basically), so just think about the fact you'll have that extra return luggage if you are flying with a cheap airline. BA didn't mind it at all.
We travelled hand luggage only so we didn't have to wait any extra time at baggage reclaim. That did mean being careful about liquid sizes to ensure we didn't buy anything over 100ml to meet the rules for carrying on liquids.
I had been advised by other ladies to book a wheelchair at the airport. At Hamburg we had lots of time so walked through the airport ourselves. There are quite a few shops and places to eat if you arrive early.
I booked wheelchair assistance at Heathrow - easy to book online if you have a BA account. I was met from the plane door and wheeled to an electric cart. I did tell the man I thought I could walk to the cart but he insisted. The cart drove us from the plane to the arrivals hall so we didn't have a long immigration queue to stand in, nor to have to catch the internal train from the B gate we arrived at, back to the main terminal 5 building.
I recommend the electric cart to save so much walking. I thought I was ok but would have been tired.
In the cars to and from the airport (Hamburg and UK) I asked to have the seat in front put as far forward as possible to maximise my foot room and leg comfort.
No-one at airport security was interested in my bag of dressings and my 4 injection needles with the fragmin/heparin for blood clotting. They were more interested in the big stash of Neideregger marzipan we'd purchased as presents as marzipan seems like an explosive on an x-ray! I had put the letter from Professor Schmeller in the bag with the needles and dressings but it might be better to put in a pocket as when I went through the scanner I got pulled aside and patted down/talked to because all the padding came up on the screen. I explained they were bandages and got asked why, so you might like to wave the clinic letter. The lady was fine - I offered to show her my bandages but she wasn't keen ;) and it was literally a few minutes of conversation and a gentle pat.
The bag of dressings was an ok size to carry on (open topped, a fancy carrier bag basically), so just think about the fact you'll have that extra return luggage if you are flying with a cheap airline. BA didn't mind it at all.
We travelled hand luggage only so we didn't have to wait any extra time at baggage reclaim. That did mean being careful about liquid sizes to ensure we didn't buy anything over 100ml to meet the rules for carrying on liquids.
Travel Tips: Accommodation and language
There are lots of hotels in Hamburg - we went for a chain to make it easy and to know they'd have english speakers if needed. It turns out that in Hamburg (and Lübeck) loads of people speak English (and other languages) - random staff in burger bars, cafes, just everywhere it seemed - so you can get by with a phrase book for a bit of help or no real German at all. I had learnt German at school so was exited to be able to go back to it. I downloaded a free app onto my phone (duolingo) for practising at home. I would recommend also downloading a phrasebook or translation app if you are going to try and speak German out there, as I had some moments where I knew all the other words in the sentence except the crucial one!
The clinic staff speak English so you don't need to worry if you don't speak German. I enjoyed practising my German with them and they enjoyed speaking English with me.
In Lübeck the clinic is next to a hotel called Traveller Hotel. This hotel is literally next door to the clinic and very affordable. There are two Traveller Hotels on the same road so if you are walking to the clinic don't panic when you see a Traveller hotel and no Hanse-Klinik! Just keep walking and a few minutes later you will see another hotel and the Klinik entrance.
The clinic is a little way out of the centre of Lübeck. We stayed in the Park Inn which is only around 10 minutes walk from the train station and a similar distance (or less) from the town centre. That made eating out in the evening easier (as we went to Lübeck) earlier to see something of the town and enjoy the trip. It took us around 40 minutes to walk from there to the clinic. I got a taxi the morning of my surgery (the hotel ensured they booked english speaking drivers for reassurance) and that cost around 10-13 euro. So if you wanted to stay by the clinic the night before you could still eat out in town. Get a taxi number from the hotel as we didn't see lots of taxis cruising around so wouldn't have known where to get one.
The clinic staff speak English so you don't need to worry if you don't speak German. I enjoyed practising my German with them and they enjoyed speaking English with me.
In Lübeck the clinic is next to a hotel called Traveller Hotel. This hotel is literally next door to the clinic and very affordable. There are two Traveller Hotels on the same road so if you are walking to the clinic don't panic when you see a Traveller hotel and no Hanse-Klinik! Just keep walking and a few minutes later you will see another hotel and the Klinik entrance.
The clinic is a little way out of the centre of Lübeck. We stayed in the Park Inn which is only around 10 minutes walk from the train station and a similar distance (or less) from the town centre. That made eating out in the evening easier (as we went to Lübeck) earlier to see something of the town and enjoy the trip. It took us around 40 minutes to walk from there to the clinic. I got a taxi the morning of my surgery (the hotel ensured they booked english speaking drivers for reassurance) and that cost around 10-13 euro. So if you wanted to stay by the clinic the night before you could still eat out in town. Get a taxi number from the hotel as we didn't see lots of taxis cruising around so wouldn't have known where to get one.
Travel tips: Travelling to the clinic
I flew from London Heathrow to Hamburg with British Airways. The flight is around 1 hour 40 minutes on the way out and Hamburg is the closest airport. I chose BA so I could ensure my husband and I got seats together, and we didn't have to queue to board our return flight.
At the airport there is a U-bahn station (local trains), or a taxi rank outside. Both very well signed and easy to find. We grabbed a taxi as our hotel wasn't far and we had decided to take some time to enjoy our trip to Germany. If you were going straight out to Lübeck I would suggest asking the clinic to pre-book you a taxi to collect you as it is a 1.5 hour drive away so could be expensive in a random airport cab. The trains are faster at 45 minutes and our train cost around 14 euro each, 2nd class.
After enjoying some time in Hamburg, on the day we went to Lübeck we walked to the central train station (Hauptbahnhof) and caught the train to Lübeck. The trains have first and second class seats in all carriages (first class upstairs). We got a second class ticket and then found the train was very full of people so we had to stand. People told me this was unusual. There are two routes from Hamburg to Lübeck, no need to change on either so the journey is very simple. The trains were throughout the day, so we just went over when we felt like it... but did end up with a wait as we missed our train!
We missed our train as in the station the platforms are not only "platform 6" but "platform 6 A-C" (and D-F or whatever). This means there can be two trains on the same platform so you need to go to the right section and get on the right train. I just assumed it was a long train and got on where I got onto the platform, then I checked with people on the train, realised, but mine had left. There are lots of cafes in the station so we just waited for the next train. The trains seemed to stick to the same place (the next one was at 6 C too) so it was easy once we understood.
Facilities at Hanse
The rooms are very spacious and comfortable. There was an AC unit and the windows could be opened for fresh air if you asked a member of staff to come and unlock them. The TV did have some English language channels or you can watch DVDs. There wasn't a separate music player or clock radio. I rather missed having a visible clock in the room.
The room has it's own en-suite bathroom with a nice walk-in shower (very important in the morning that there was no awkward threshold). The shower was average - as the water drops stung anyway I guess this is one time you don't want a power shower!
The food was very tasty and there was a good menu range if you ate meat/fish. I did think the portion size was a bit large though! Just look at that mammoth pasta dinner! I'd already been given post surgery soup and toast a few hours before, and had a large fruit platter in the room: an appealing range even in winter including apricots and cape gooseberries not just grapes and apples!
Breakfast was lighter and less exciting but still good, with warm fresh bread! The nurse recommended avoiding toast as German toast is better eaten immediately, rather than having the delay of getting to the room.
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