My name is Evita Gamber. I am 22 years old, I am from Koblenz/Germany, but I study Maths and Physics in London. I love the sciences (especially quantum mechanics and cosmology), solving riddles, philosophising and exploring hidden places. I would like to reach out to other chronic pain warriors and raise awareness of chronic pain and chronic illnesses.
We are getting very nervous and even calm little Vita is a bit overwhelmed with the situation. I apologise for all the mistakes, but added lots of photos.
After my short stay at home for the weekend I was again admitted to my local hospital for pain treatment, discharged on Monday to see my GP and then went back home to meet my lovely friends for the last time before leaving for Freiburg. Bo was very excited to see so many girls all at once.
Fortunately, we were able to leave Bo with a very nice couple. I am sure that they will have a lot of fun together and I am happy that he doesn’t have to sniff the worries and fear in the next days. Thank you very much for looking after him, Andrea und Ralf!
We arrived in Freiburg on Tuesday in the early afternoon. Dr P. and the senior doctor wanted to meet us prior my admission. He greeted us very warmly. We went through the scans from the 3D CT and showed us how prominent the compression and the aneurysm are. Compared to my aorta there is a massive balloon growing on it. We went through some questions regarding my past medical history, the procedure of the autotransplantation, the preparation for the surgery and also the treatment of the aneurysm. The problem is that the surgeons cannot say for sure what exactly they will find when opening it again. The have to anticipate different scenarios and how to treat them. An anastomosis of the transposed SMA to the aorta after resecting the aneurysm would be the best case, but they might need to use another vein patch (from my right leg this time) or an artificial one (which of course increases the risk of thrombosis, but on the other hand my vein patches didn’t work once resulting in the emergency surgery for the blockage of my right iliac artery and the chaotic construction at my left renal vein – either way it will be risky)… If the part of left renal vein that can be used, i.e. after the removal of the vein patch from the previous surgery, is too short, they have to replace it on the right side of my bladder. Thus, they might even need to deal with the stenosis of my right iliac artery to ensure blood flow to my transplanted kidney. The risk to lose my kidney is obviously there, but luckily I have another one which works quite well. In both cases I would get rid of the flank pain. However, it wouldn’t be great in case I develop right-sided flank pain as many LPHS patients do. The surgical pain will be ‘double’ since I am both receiver and donor of a transplanted organ. They see a big problem in the adhesions and scar tissue from the previous surgeries, too. I will probably need many blood transfusions. Anyway, the meeting was just to get to know each other in person. It was pretty obvious how serious this whole thing is. Dr P understands the pain very well. I am in pain all the time, I sit like Victor Hugo because in this position the blood flow is better, less pressure of the aneurysm on the vein and the nerves around = the pain is less. He was also very caring for my mum and recommended strongly to find some accommodation nearer to the university clinic. When the worst is over and I will be sent to the ward and if I am again a nursing case she will be able to stay in my room. Luckily, a friend of a friend of a friend (auch dir alles Liebe, lieber Kniff, für deine Behandlung!), danke an Kniff, Beppo und Frau Pieper, has offered a room for my mum just a few minutes drive away from the hospital from tonight onwards. Thank you so much! Freiburg seems to be completely booked out because of the holiday season.
Hello, I am the future.
Well, it is a nice city. After the meeting we drove to the accommodation we stayed at the night before my admission. The room is called sunrise for a reason. After some colon massage and recovery from the physical stress of the car ride with a nut cracking flank and the worries, we went on a short car ride along the fields and wine yards, cows and their cute calves and through the refreshing forest. Walking doesn’t work anymore, so I guided my mum over gravel paths. It reminded us a lot of the rocky roads in Tuscany. But there were no white marshmallows. I really hope we can go on some normal holidays in a few months time, without hospital stays, emergency visits, fainting and all the other crap. We passed a nice looking ruin ‘Schneeburg’ on ‘Schoenberg’ as well. That reminded me of exciting forest runs and summer hikes. Nature destroys castles to create wonderful objects of creativity. To be honest I find ruins much more interesting than castles. Not only because they are great to climb on if one is physically able to, but also because one can imagine how the actual castle looked like. But it isn’t useful to keep dreaming about its past, but may think of a plan to reconstruct it again to give a safe home if necessary. Over the years it has been a place for blooming flowers and many paths are winding around it. Which leads us to Romanticism again. I don’t see ruins as a symbol for ending or destruction, but for a new beginning and potential. Just like my body.
With a nice view over Freiburg in the sunshine I had my last ‘meal’ and we drove back.
Serious matters. Advance directive and power of attorney, organising all past medical records once more. Colon massage, immediate release opioids, no pain relief, increasing fear in my mum and me.
Yesterday we drove to Freiburg City for a short walk through the Altstadt (as I have never been here before). They are very environmental friendly, organic and local food is everywhere and you can see more bikes than cars. We passed some nice artichoke blossoms* on the market at the Freiburger Münster**, a gothic cathedral with the ‘most beautiful spire on earth’ and the famous ‘Freiburger Bächle’ (small runnels that you have to keep track on- ‘Venice for your feet‘ (Eberhartinger)).
I was then admitted to the surgical clinic at the university clinic, had my blood workings etc and was admitted on the ward. My room (a three bed room, but I am alone here) is a very nice big room with a..
First of all a massive thank you again to my old school MvLG in Koblenz that organised a charity run and collected more than 8,000 euros!
For the important bits please skip this.
[I have added some notes to vascular compression syndromes, a page on sweet distractions and a page on tips for things and stuff. Soon I want to write more about testings and scans, not so much about the interesting physics behind it, but tips for patients when to do what kind of imaging, what to expect and how to analyse them without a medical degree. It can be very challenging and fun! But that needs some time. Then I played around with Vita’s Little Journey. I am not a great artist, but here is a sketch. V-compression (you can decide which one), me on my Impermanent self-built ladder getting an apple from the Tree which has grown around my vascular system (you can see the graft in my iliac artery, the transposed SMA which needs to be added by the aneurysm, Mr Nutcracker on my left renal vein – all messed up, but still full of life, me Awareness meditating, Science reading and working, my three Jazzy scars which bloom Origami of Lotus flowers, me hanging from my lucky horseshoe that has showed Up so far, hanging down in the Rocks, balancing on Narrow lines, Enhancing awareness, flying at a raising phoenix feather to Yummy, Yippie life again. Still need to introduce me riding on Bo…]
Let’s start with things you can do under the MRI/A (MRI → organs & tissues, MRA → blood vessels) when you are either afraid of the ‘long’ tube or like me afraid of another severe reaction to the contrast agent or simply can’t lay for 45min on you bones in the cold). But please listen to the breathing instructions of course.
10 things you can do to lose track of time under the MRI:
Meditate. Easy, no instructions needed.
Have a song performance in your head. Think of songs that fit to the rhythms* of the MRI. By the way you can actually ask to play CDs in some MRIs. So take you most favourite one with you, it might be possible. Mind as music.
Count. Think of number sequences. In Welsh. In duodecimal.
Go to your happy place. Or pretend the MRI is a machine that is taking you anywhere you want to go. But don’t get too excited. I never arrived in Einstein**’s office, on Shakespeare’s chair or on Kilimanjaro, not even on Ben Nevis, somewhere on the West Highland Way, Appalachian Trail or Trans-Siberian Railway track or on a turtle on Galápagos Islands or – okay, I should stop dreaming now.
Think of anything that can be visualised. Visualise it in every detail. Think of anything that can be tasted. Try to taste it on your tongue, every little detail. Think of anything that – you get it.
Control your breathing. Concentrate on your breathing.
Just relax. MRIs are one of the least invasive imagining diagnostics. Learn more about them before, ask the technicians your questions. I will start glowing at some point with all the invasive tests that included radiation I had.
Close your eyes when entering until it is over. This is especially useful for claustrophobic people. What you don’t see doesn’t exist, right?
Remind yourself that you are in control. You can stop it at any moment. The assistants will take you out.
If nothing works you might be able to ask for some sedation.
Always remember that the tests is done for a reason, it might give valuable insight.
Enough verbal diarrhoea. Unfortunately, I have to bring some rather bad, but somehow also good news. The 3D CT showed the prominent compression of my left renal vein (=Nutcracker Syndrome) as well as an aneurysm in my SMA after its transposition to infrarenal during the big surgery in November 2017. Not good.
My actual plan was it to get the lidocaine test in Freiburg and then go to the US to have the surgery with the doctors who have collected a lot of experience in the past years, including ‘difficult’ cases. However, the aneurysm is with its size compared to my rather thin vessels already quite big and has been noticeably growing. It is also pushing even more on the compression of the left renal vein. The symptoms got much worse the past months as well. This forces doctors to urgent care. The surgery needs to happen soon. The aneurysm could basically rupture at any point, if I try to pick something up from the floor or curl up from the pain again. Thus, the plan is to get transferred to the university clinic in Freiburg next week or rather being discharged for the weekend to spend some time with Bo and my mum at home and then drive to Freiburg. The transplant team and vascular team are planning the surgery. It is scheduled for the 12th of July. 12th. In eight days. That’s crazy!
I still don’t know what to say. I am of course waiting to receive second opinions from Madison, London and the angiologist in Cologne. Dr R and Prof S will hopefully be able to advise the teams here.
It would be an open surgery again, lap wouldn’t work. As soon as I know the exact surgery plan I will update you all. But basically:
renal autotransplantation (probably my left kidney will be placed to the left side of the bladder because of the interponate in the right iliac artery). I explained that surgery here.
elimination of the aneurysm
maybe elimination of the the stenosis in my right iliac artery
the nut will be free again, bye NCS, bye LPS i.e. bye flank pain, bye horrible, agonising stabbing, non-stop pain, bye the-spikes-that-must-not-be-named
bye uncomfortable left abdominal pain
bye super low blood pressure
bye ticking time bomb
if 3. is done: bye right leg pain after physical stress (which means after recovery etc I would be able to run again!)
at least one complication (statistically it should be a minor one)
Add-ons that will surprise me (I think they will remain):
diffuse abdominal pain
POTS (I think it is related to the compression and weight)
For short: paradise. *** The super cheesy post will be written if the surgery is definitely going to happen.
The transplant centre of the university clinic in Freiburg is one of the biggest and most busiest in Germany for kidney, pancreas, heart and lung transplantations. The transplant surgeon is a nice man who understands the situation very well. He has done more than 3700 kidney transplants (including 600 living kidney donations and 135 where donor and receiver didn’t have the same blood type, really interesting!), has experience with autotransplants… But first I need to wait for the other opinions, the complete surgery plan and meet the teams in person. I won’t get excited until I have made a decision. By the way, I am a strong advocate of organ donations. I recommend everyone to read more about that topic, the ethics, the science (in German) and the effect it can have (see here, here and here). There are people who wait every day for this one call ‘Please come to the hospital, we have a new life for you.’ Whether living donations or donating your organs when you die, you can improve or even save lives. I have already explained why a nephrectomy might not work for me. But if I die, I donate everything that can be used, from my heart to my vein tissues (as far as they can be used :’)). Sometimes I wonder if people would mummify me and find me in a few hundred years. What would they think of me? Vessels not where they should be, clips and stents and grafts, scar tissue everywhere, missing ligaments, nerves and plexuses, soon also organs which won’t be at their normal positions.
The past weeks I have spent at my local hospital for pain treatment and parenteral nutrition. I gained some weight, but we couldn’t really find a better pain management plan. High doses of opioids – slow and immediate release -, fast paracetamol iv and all the other crap don’t help. Just more side effects. Then I stop certain medications, but side effects don’t decrease. So what’s the point. I am probably already poisoned. I also started taking another drug which works similar to Cialis which had a slight effect, but then I got hit quite badly by high temperature, headaches and bile vomiting (still not sure where this all came/comes from…) on the weekend. So not so sure about it either. My bowel hasn’t moved at all the past weeks, I am getting one enema after the other which is not only uncomfortable, but also a good way to trigger my fainting. On the other hand I have been advised that if the surgery happens in less than ten days I shouldn’t really care about the should-keep-the-oxy-as-low-as-possible-rule. The weekend also stole some weight again, so that needs to come back now to prepare me as good as possible for a possible surgery. I am saying possible as I want to wait for 10 other opinions, look the surgeons into their eyes and on their hands and go through their plan in every detail.
But to be honest Freiburg definitely sounds more convenient than the US. Let alone that I wouldn’t have been able to raise enough money within the next few weeks (we are giving our best to convince the insurance). Freiburg is an old university city in the south-west of Germany, right next to the Black Forest. More convenient if a one-month hospital stay turns into several again, more convenient for me without flights (which by then or even now would have been dangerous regarding the aneurysm), more convenient for my worried mum, more convenient for Bo to visit me every now and then, more convenient (excuse me, mum) for me and my studies and in the end it doesn’t cost 100,000+.
Next point. I have create the gofundme page in March with the aim to raise 10,000 pounds for all the money we have spent until then and were going to at that time if the surgery in London would have happened. But things went differently. I thought I would need to go to the US to have the renal autotransplantation there since this is the only surgery that can help me and the centres that conduct those surgeries are across the Atlantic, especially the one in Madison I have been in contact with. Thus, I thought I would need to raise 100,000 pounds at least (actually still too less). Now things have changed again. So if the surgery is going to happen I have raised about 10,000 pounds more than I actually wanted to in the beginning (I am sure we have spent much more, but everyone has to spend lots on the things in life we don’t need or want, right?). As I have already mentioned in my past posts this money, if not needed for my medical treatment or still the surgery in the US, would go to foundations that research in vascular compressions/LPHS and other patients who suffer from similar conditions. That would only be fair. Some daydreaming…I would like to organise a meeting for patients, doctors, surgeons, specialists, advocates, carers…of those complex compression histories to share their experience and knowledge and connect. I will use some for raising more awareness. But I will also keep a bit for a [big eleventy first/Mad Hatter’s tea]- like party when I feel better. That’s the plan if the surgery is going to happen!
By the way, two days ago I received the results for my exams of third year. In the mids of hospital stays and doctor appointments, unbelievable pain increasing neuromodulation, several A&Es, collapses, days and nights of pain and nausea I managed it to write 7/8 of my maths and physics exams. One hour prior I took heavy pain meds to survive it through it (although it only lasted for half the time), which also meant that I fell asleep during two (I think so…) and of course couldn’t remember anything or concentrate at****. I had to defer one because I was at A&E again, but I passed them all! Even higher than I thought I could or would have been able to. That made me quite happy yesterday. I am also a bit proud of myself.
On the other hand I have been studying so much medicine on my own now, that I think that I should have studied medicine. At least I would have been able to save lives or make them liveable again. But then there are quite a lot of overlaps. At the moment I am investigating the vortex evaluation in aneurysms and stenoses. I have enough data. Haha. Seriously, there is still no good mathematical model for aneurysms to predict when they might rupture, their parameter dependencies, describe their growth and calculate when the risk is high enough to indicate a surgery.
I will write a proper post the coming days (hopefully). In the meantime I try to gain more weight and hopefully snuggle Bo.
Heute Morgen hatte ich lieben Besuch von zwei Schülern der Schülervertretung und einer Lehrerin meiner alten Schule. Über 8000 Euro wurden beim Spendenlauf beim letzten Sportfest gesammelt! Unfassbar! Herzlich lieben Dank an das Max-von-Laue*-Gymnasium in Koblenz, an die SV und die Sportlehrer für die Organisation, das Auszählen, all die Schüler fürs Laufen und die Spender.
Ich bin natürlich sehr berührt, glücklich und dankbar, aber auch sehr stolz auf euch.
Ich wünsche euch allen eine angenehme Sommerpause!
Many thanks to my old school Max-von-Laue-Gymnasium in Koblenz for the massive donation from their charity run of over 8,000 Euros! I am very touched, happy and grateful, but also very proud of you!
As you might know running was an important part of my life. Thus, it is wonderful to know that the donations have been collected via a charity run.
As much as I have looked forward to my studies in London, I have missed my school MvLG a lot.
Thanks for the visit :-), zucchini and those wonderful flowers as well as your support throughout @Carina!
The hope blossoms every day.
*named after Max von Laue, a German physicist who won the Noble Prize for the discovery of the diffraction of x-rays by crystals. He contributed a lot in the fields of optics, crystallography (see Laue equations), quantum mechanics, theory of relativity and early superconductivity. His doctor advisors were Max Planck and Arnold Sommerfeld, he became a very goof friend of Albert Einstein and Max Born. He was very well connected to many physicists (in Germany and abroad) throughout his life and helped to establish many institutions of ‘today’s’ physics. Moreover, he was a strong opposer (in secret and also openly) of the NS regime and ‘German physics’, he said ‘science has no race or religion’ and had a strong sense of justice. Together with Otto Hahn he has helped persecuted scientists to flee from Germany. He loved high speeds, being active skiing, mountaineering and motoring. Unfortunately, a fatal accident ended the life of this intelligent, inspiring and strong man.
Right now I am looking outside the window of our local hospital into the summer sky. I would like to go outside, but I am connected to the parenteral nutrition and in too much flank pain anyway. I am very grateful for the nutrition and a wonderful room that the great doctor here organised. I will have some other tests this week (POTS, kidney and adrenal glands) including the CT with 3D reconstruction. However, the pain management doesn’t really work yet. Well, it hasn’t worked throughout the past few months and tbh I think there is simply nothing one can do and I should have the autotransplantation as soon as possible.
Despite the weight gain I am so tired and exhausted. The pain is just too much. I am sorry for the spelling mistakes.
There are some things I still haven’t mentioned yet.
To my mum
Thank you for cooking fennel and zucchini, every single day.
Thank you for massaging my tummy. My constipated tummy. With the scars.
Thank you for holding the sickness bags and holding back my hair. Thank you for patiently waiting through hours of nausea with me.
Thank you for opening and closing the window every few minutes. Thank you for bringing blankets and jumpers and then removing them in the next moment.
Thank you for keeping me company in the many hours I spend on the loo, in the bed or on the floor in pain.
Thank you for holding my hand in the hours where we didn’t know how I would survive it.
Thank you for always being available.
Thank you for staying up all night with me.
Thank you for driving to London in the middle of the night.
Thank you for leaving me alone if I really need (and can) be alone.
Thank you for driving to A&Es wherever we are.
Thank you for literally saving my life.
Thank you for telling me not to give up.
Thank you for adjusting the infusions and iv meds.
Thank you for the enemas and the time I screamed at you to take out the god damn thing.
Thank you for reading a book without me noticing anything because of the meds.
Thank you for accepting my bad moods.
Thank you for coping with my brain fog.
Thank you for dealing with my irresponsibilities.
Thank you for supporting my goals even if you don’t share their necessity (which also means to ‘sleep’ for months on the floor of a student accommodation, get me to the hospital and uni in between).
Thank you for making endless phone calls and research my conditions.
Thank you for organising and documenting everything.
Thank you for staying strong for me.
Thank you for the night rides.
Thank you for being there despite the fact that often you can’t do anything against the pain.
Thank you for being my voice when I can’t talk due to the level of pain.
Thank you for making things clear.
Thank you for telling the doctors what to do if necessary.
Thank you for trying to understand my pain.
Thank you for carrying me from A to B, including carrying me up the stairs to show me a Christmas market and pushing the wheelchair through the whole of Bonn such that I can eat a vegetable bowl.
Thank you for listening to the same songs on the ways to the appointments.
Thank you for listening to the ‘Mum, something is weird again…’s.
Thank you for checking my breathing during the night.
Thank you for going through all this, seeing me in the most worrisome conditions over and over again and not giving up.
Thank you to listening to ‘I can’t go on anymore.’ and ‘Please, make it stop.’
Thank you for the constant adjustments.
Thank you for managing the balance between ignoring the situation, wishing me the fun and knowing that it might go wrong and providing first aid support in the next moment.
Thank you for never complaining.
Thank you for accompanying me on this traumatic journey.
Thank you for walking Bo for me.
Thank you for organising our lives.
Thank you for accepting this unpredictability.
Thank you for travelling to Cologne airport on Christmas Eve in 2017 to get me a seaweed salad.
Thank you for the jokes in between to cheer me up.
Thank you for the encouragements.
Thank you for being strong and brave. Thank you for going through the anger, fear and hopelessness.
Thank you for your patience, passion, empathy and love.
Thank you for the idyllic life I had until 2016.
Thank you for always trying your best.
Thank you for standing up for me.
Thank you for believing me. Thank you for believing in me.
Although each day is unpredictable, each day gives us new hope. Please cook something nice for you, sit down on the balcony, enjoy the sunset, cuddle Bo and have an early night.
10 things not to say to a mum of a chronically ill child:
You have to believe in it. Everything will be fine.
He/She seems to be ok. He/She doesn’t look sick.
I know what you are going through.
You have to calm down a bit. Just relax.
You have to think about something else.
Have you ever thought about whether the pain is just in his/her head?
(Just don’t say anything.)
He/She shouldn’t take so many medications, don’t you think so?
I know someone who has a child that has ___ and they tried ___ and made them ___.
Don’t worry that much.
Simply don’t judge, diagnose, compare and ignore.
Another thing I wanted to mention: Gratitude in good times and in bad.
Gratitude is a wonderful and powerful practice. It helps us to realise what a tiny part we are in the blooming network of life. As soon as we become aware of the interconnectedness of life it fills us with pure joy.
It can soften a hardened heart, it can broaden a narrowed mind, it can clarify our deluded minds. It can calm down a troubled mind, it can relax a stressed body, it can release our fear. The difficulties and uncertainties are still there, but gratitude allows us to meet them with an open mind and open heart. It can take us back to the safe ground.
One way to cultivate gratitude is through mindfulness (meditation). Try to acknowledge all the little things around you. You will see how grateful you can be. It is the reflection which can take you even deeper.
Yes, there is a lot of pain. But I am grateful that I can feel it. I have a body, I have a mind. I have been through hell and I am still alive. I have learnt a lot…Next week.
It is so easy to notice mistakes, flaws, all the uncomfortable pieces in life. But how do I use the growth opportunity of them? It is easy to complain. But how do I say ‘thank you’ and give compliments? It is so easy to oversee all the wonderful things. There was a time I felt grateful for certain things. Where did my gratitude go? Those things didn’t change, but when did I last show true gratitude towards them? Questions which lately have been wandering through my mind a lot.
I think gratitude depends too much on current feelings and conditions. It shouldn’t be like that. It should be a true constant.
Dogs manage this quite well. Even if we leave the room for only a few minutes, Bo goes crazy when we come back again.
Near our new flat. Apparently he is still waiting for me at the door.
I started listing five things I am grateful for each evening. Last night for example: wild apple tea, my warm bathrobe, summer sunsets without buildings, the smell of the petrichor in the forest, Bo’s long sniff. Basically things I am missing right now. No coincidence. Try to find the brighter side of a sucky life. Focus on the bits that are positive, the things you did and can do. Count the seconds where you feel like this you are on top of the world, don’t count those hours where you have to carry it.
Don’t follow the motto ‘Today I am living in the moment. Unless it is uncomfortable, then I will do something else.’
Also, stop saying ‘Sorry.’, but start saying ‘Thank you.’ more often.
I have changed to ‘Expect less. Appreciate more.’ a while ago, see here. But now I have to realise that this is wrong. Expectation shouldn’t be related to appreciation.
The practice of gratitude goes hand in hand with the practice of giving. Dana. Not only donations but also sharing of work, knowledge, time, devotion. Why do we give? Tradition, reputation, good karma? Well it should be selfless and unconditional.
Gratitude can also be found in challenges. I have found my gratitude.
Gratitude is a warm sniff, too. Thus, gratitude == happiness.
First of all: We found a new flat! It was quite difficult to find something which we could finance and Bo would accept and where Bo would be accepted. We are very happy and excited now. I am laying in my bed in my new room which is packed with books and notes, clothes and stuff and things everywhere. I would love to organise everything, but my body doesn’t allow it. Wouldn’t it be great if Mary Poppin’s spells would work in real world?
a few metres away from our new home, Bo loves it!
Herzlich lieben Dank an alle, die beim Tragen und Aufbauen geholfen haben! Ihr seid einfach die besten!
A very good friend of mine whom I haven’t seen for ages (except on stage) visited me yesterday. That made me very happy. Lately, I am having so much pain and nausea that I cannot sleep at all and keep mum and Bo awake all night. Hopefully that will get a bit better in the next days.
so many treeeeees
In the past week nothing exciting happened except that I got the official diagnosis of POTS* and a follow-up appointment with a waiting time of more than two hours for a short consultation where nothing was planned. Bo is helping me to gain some weight.
As I have already mentioned a couple of weeks ago the LRV transposition won’t happen (I am lucky about that as it wouldn’t have solved my problem). The surgeons here in England and in Germany can’t help any further at the moment (except with some pain pain management, which hasn’t work until now either). Any kind of surgery would be too risky for them. However, I won’t be able to tolerate the pain level that much longer and I also can’t take strong opioids for the next years. Thus, I will need a renal autotransplantation. In the US there are several centres that conduct research on it and have collected a lot of experience in ATs in the last years, but especially for patients from abroad you need to pay a lot of money. That’s why I am trying to organise most of the tests here in Germany, such that the costs for the evaluation won’t be that expensive, but the surgery needs still to be paid ($109272 with 30% self-pay discount). I will have another CT (with 3D reconstruction) soon. If this one shows (and later the xray abroad) a clear compression I might not even need the lidocaine testing. Otherwise I was able to find a transplant surgeon who cooperates with the urologists who could do the test here in Germany. I spent several days on calling and emailing university clinics and urology clinics. In the end I luckily got a contact from another patient who is currently at UW Health. Vascular Compression Syndromes are quite complicated and I wanted to explain what exactly this miraculous autotransplantation actually is and why it would help with my symptoms.
An autotransplantation is a process where an organ or a tissue is transplanted from one part to another in the same body. Patients suffering from LPHS** due to Nutcracker Syndrome, or in general people who have severe, long-term kidney pain, benefit from a renal autotransplantation since it breaks the direct connection between the kidney and the nerves and thus stops the pain. Moreover, the body still has two functioning kidneys. That’s why it is preferred to a nephrectomy (removing the affected kidney). Especially people suffering from LPHS can develop bilateral pain and one doesn’t want that they end up in dialysis. The surgeon can decide whether to do it laparoscopically (small incision, with the help of a camera) or via a large midline open surgery. The affected kidney is removed, stored in a special cool solution and then replaced next to the bladder (most often on the right side). The affected ureter is transplanted as well (clue: that is important for the questions in the end!). The left renal vein and artery are kept as long as possible and then anastomosed to the iliac and external iliac veins. The surgery lasts about 5 hours. During the surgery the surgeon will insert a stent in the ureter to make sure that that it stays open after it, but will be removed some weeks later. Recovery will take some time. Many patients fight with the post-op pain, bloating and constipation, nothing compared to the pain before. Follow-ups are important to make sure that everything has worked well. The centre where I would go to wants the patients to be near the hospital for at least a months, follow-ups are after one, three, six and twelve months and then yearly.
There are of course other methods to treat NCS: stenting, transpositions, bypasses etc ., but except the LRV transposition (and also not always!) they don’t have a long-term effect. Any kind of rewiring, elongating or whatever crazy stuff some surgeons do would be too risky for me due to the previous surgeries. That’s why I need to get the AT.
Whether the autotransplantation is the right surgery for the patient must be decided by a multidisciplinary team of transplant surgeons, radiologists, urologists, for NCS vascular surgeons. A lidocaine test can prove this prior the surgery. The LPHS-UW test works as follows. A balloon catheter is inserted in the ureter of the affected side and 0.5% bupivacaine (lidocaine) is injected. It is kept in there for 5 minutes. If the patient is pain free for a few hours it is proven that he would benefit from an AT. Many patients have no pain after the test for several hours up to two days.
Like every surgery it does have some risk, especially if patients underwent other surgeries before. It is a complex surgery. It may be the case that they can’t transplant the kidney back and one has to live with only one kidney. Other organs can be injured, there is the risk of blood clots, infections, stroke and heart attach, bleeding, a blocked bowel afterwards etc.
LPHS pain has been described as the worst pain in medicine. Many patients can’t live a normal life at all, are bed-bound and dependent on strong medications including strong opioids. In fact, they are often labelled as drug addicts.
I can tell from my own experience that this is the worst kind of pain I ever had. Since it has been getting worse and worse I won’t say that this is the worst pain in medicine. Pain doesn’t know any limits. It isn’t like a normal tummy ache, not even comparable to the MALS pain I had before the surgeries (which is described as pain similar to pancreatitis), it is gruelling. It is constantly at a level of 5/6 with frequent pain spikes at 9/10 which can last for many hours. Well, it is basically the same pain as if you pass kidney stones all the time.
What are the symptoms for LPHS?
Why can NCS only occur on the left side whilst LPHS can be bilateral?
Why does Cialis help with LPHS?
Solutions will be posted tomorrow. If someone sends me the right answers, (s)he gets a reward of course. All 3 questions right: Snuggle with Bo, walk Bo, chicory coffee with hemp milk (and one or two other hemp products); 2 questions right: Snuggle Bo, walk Bo; 1 question right: Snuggle Bo. For people abroad I can offer a 15/10/5min Skype tutorial on Feynman diagrams with Prof Bo.
Bo is so happy.
I know that the cost for the surgery is a lot and believe me I do feel very uncomfortable to ask for so much money. I am still totally flabbergasted how many people have donated in the past three months. But I would be grateful if you could share my pages to friends and family to spread awareness and ask for some support. Every even smallest donation would mean a lot. The situation is quite complex, also due to the former surgeries, but if I can somehow convince my insurance to cover the cost or parts of it (I would still need to pay it in advance), I would donate the money as I have previously explained.
Apropos the small-things-accumulate-to-quite-a-lot-topic. Recently I had to think about all the time I have basically lost because of this (excuse the word) shit illnesses and calculated some stuff. An average person spends about a week per year on the loo. I have definitely spent more time on it or next to it than that (I estimate it on at least 3 months in the past three years). I have also spent about 9 months in hospitals in the past three years. I have had more than 200 blood tests (i.e. about 1000 trials to get some blood, so 1000 bruises), more than 50 urine samples, about 30 pregnancy tests and thus a lot of X-rays, I drank more than 25l Moviprep, I have spent in total several weeks on getting to and back from appointments, probably months if I calculate the waiting time. I have spent weeks for consultations, tests, laying on tables for examinations. I spent weeks for researching my conditions, days to explain it to people who simply don’t get it. I have several folders of test results, evaluation and documentations. I have boxes of medications and alternative medicine trials. I have spent days for special food preparation. I have written hundreds of emails and letters to doctors and institutions.
Either I am in too much pain or I try to recover from another pain spike or the meds finally kick in and I somewhere else in dinosaur land. Or I am somewhere in between. Sometimes it hurts more to accept that I can’t do anything else than the actual pain.
I have spent almost 3 years in pain, from which probably at least a tenth was so severe that I wasn’t able to do anything, another tenth where I was just laying down unable to move in pain and watched how life was passing by, maybe a tenth where I actually felt so good that I thought that I was able to live a normal life again. All together I have lost a lot of time I could have used for studying, working, exploring the world, socialising, supporting others, running and sleeping :’). I have learnt how precious time is, accepted (I am still learning tbh) that I simply can’t do anything every now and then and don’t waste it for things I could still waste it for, if that makes sense.
Chronic illness is a part-time job. I can be lucky that I am a scientist and know a bit in biology and medicine, that I have a curious nature and want to understand everything in detail. Researching, investigating, organising. It is a job that doesn’t pay but only costs. In the spider web of doctors from vascular and gastro and pain management and all the little side paths in between I have to sort out the missing communication and links in between. For someone who is already affected by an illness this causes more unnecessary pressure. I am so grateful to have my mum regarding that. She is supermum. We often joke about it, but actually it isn’t funny at all. She is my secretary, nurse, ER doctor, dietician, cook, physio, donkey:(. Not because I am too lazy, but because the pain level and weakness doesn’t allow it or I refuse another ER visit as I am fed up by doctors who tell me that they can’t do anything. The health care systems should be more efficient, more communication and transparency are needed. A better understanding of chronic illness/pain in the general public would be very helpful as well. If someone isn’t able to work or study because of a chronic illness that doesn’t mean the person is on holidays. Wirklich, Mama, du bist einfach die beste. Du machst und machst und machst ohne ein Danke abzuwarten, ohne, dass ich überhaupt nach etwas frage. Du versprichst selten etwas, weil du es einfach direkt machst. Es gibt Leute, die versprechen und reden viel, aber nichts passiert, du redest nicht und machst es direkt. Du schläfst ein, wenn ich einschlafe und wachst auf wenn ich aufwache (also nicht sonderlich viel). Wenn ich all die kleinen Details auflisten würde, wäre ich in ein paar Tagen noch am schreiben. Ich hab dich lieb!
But then I ask myself whether this is truly wasted time? Perhaps this is just an episode (which did become a bit longer) in my life, an active part of a (slow) transition. Just like the caterpillar which needs some time to become a butterfly****. At the moment I am still crawling up a very high tree, slipping, falling down, climbing up again. I am just (slowly) preparing to clap my wings. Little by little. From time to time I have wonderful views on the valley of life. Life can be beautiful. Life is beautiful. I have always wondered whether the butterfly still knows that it was a caterpillar before***.
In the end, I am more concerned to lose myself in all of it.
a couple of days ago, what a wonderful sky
Thanks a lot to Karina who published one of my posts on her website. She is an author, blogger and journalist who has been through quite a journey due to her chronic illnesses. Writing has helped her a lot to cope with everything. She raises awareness and supports other people with chronic conditions. She is very inspiring. I wish her all the best!
Well, I will try to organise my stuff now.
Medications part 1
Well, that was exhausting. I think I will never stop struggling to rest as much as I actually should. Bo says that he had a lovely walk with my mum!
Wir sind immer noch auf der Suche nach einer bezahlbaren Wohnung/einem bezahlbaren Haus zur Miete nahe Koblenz mit Hof oder Garten, am besten in der Nähe von Wald oder Feldern. Bo braucht endlich ein eigenes Zuhause auf das er aufpassen kann. Über jegliche Hilfe wären wir sehr dankbar!
I have been struggling a lot the past days. The level of pain is simply too much. I am so grateful for your help, the donations and kind words. But I also feel guilty. I don’t know how to accept it. I have to fight even more. I feel guilty for being ill. I feel guilty that I am not trying enough. The cracker has been really active again. I hope that it won’t erupt soon. Bo might not be able to take the pain away, but he definitely deserves an own post.
I am pretty bad at romantic writing, but this is for you, Bo.
We are a good couple. We can be quite similar or complement each other. We question nearly everything. We love to bark ‘Yes, but…’.
Bo, you are massive. Your second name is Massiccio. Deep down and literally, you are just massive (and still growing). A fluffy marshmallow, sweeter than the tonka bean* of Pfeffersack&Soehne. You are always in the way, no doubt.
You do know how to behave, but you decide when to do so and when to play the little child. Bo, you are very elegant and you are well aware of it. But you can be quite dirty, too. You don’t mind the brown mud on your snow white fur. As soon as I start cleaning you, you start cleaning yourself as well. You little rascal. You little angel.
You are so afraid of everything, even of water. Well, when the hot summer arrives you will jump into the water, believe me.
You are smart. You know when to decide something on your own and when to follow our decisions. You also know when the right time comes to embarrass us the most. Bo, you have an amazing sense of humor.
You are always hungry.
You don’t need a leash, in fact you are the best boy if you walk freely next to us (until you can smell that someone eats something delicious!). Your hearing is amazing. I can stand right next to you, talk with you and you ignore me completely, but you can hear the opening of a box with pigs’ ears miles away. Or you walk yourself with the leash in your mouth.
Your happiness gives strength, but also shards. One shouldn’t take you into a china shop.
You can also wake up a whole street if you flop feather-like on the floor.
Thank you for being there for me. Thank you for understanding me. Thank you for laying down beside me. Thank you that I am not the only Grobmotoriker** here.
You are my affectionate marshmallow, my softest cloud, my faithful teddy, my warmest snowflake. When I look into your eyes, I can see the purest pureness. The most beautiful eyes in the whole wide universe.
Good morning, world. It must be morning, I am hungry. But I am always hungry, so it could be any time. I wonder what is going to happen today. My name is Bo. That’s how they call me. But sometimes they call me ‘Kleiner’, ‘Stinker’ or ‘Hase’. Maybe my name is spelt Beau. I am quite nice to look at, of course I am Italian. My parents are from Tuscany. Will we drive to A and E or does she have any appointments? I don’t hope so. I am not allowed in there. Yesterday, there were some people who brought a big colourful box with them. Then the humans talked. Everyone stroked me. They were really nice people. I could smell a lot of gratefulness. And then they left again and the young human was really exhausted. Hello, I can bite my own tail, can you see it? Hello, can you please look! Why is she laying on the floor again? I am still not sure what she is. She isn’t a dog, is she? She makes weird noises. Oh no, what is going on again? Why is she rushing to this thing again? She always spends a lot of time in there. Now she is getting some treats again. It is so unfair, she always gets a lot of them. In the morning and evening and in between, small red ones and darker red ones and green ones. I wonder how they taste… She doesn’t even chew them. But she always tells me to chew more. But I am always so hungry. I am not like her. I can’t just eat a tiny bite of something and wait for the next one. Well, maybe they are also white or blue. I have heard that those are other colours, but I can’t see them. What a pity. Why is is there water coming out of her eyes again? Mhm, I will lick it away. Yummy. Maybe we will play together in a bit? No, she’s going to her sleeping place again. She could need some sun light, she is so pale. Or some pasta and pizza. That’s what my instinct tells me. I always thought humans are always busy, but she seems to rest so much. Now she is playing dead again. Well, I will sleep then, too. ZZZzzzzz. Puff. Oh, I heard something. She is raising from the dead again. Hello, hello! Oh, she is coming. She is looking better. I am getting cuddles and snuggles. See, here is my hedgehog! You can throw it and I will fetch it. Hello, can you please throw it! Hello, look at me! Heeeeello! I am getting it. See, how great I am at this! Am I getting a treat now? Ok, I will do it again.
Why does she always lay down in weird positions? How should I fetch the hedgehog? If i jump on it I will get told off. Humpf. What shall I do?
More snuggles. That feels so great! I can jump, too. See. She is jumping around, too. Let’s jump together. And she is singing, I can howl. We are so great together. I am sorry, I didn’t want to throw you to the ground. I am just so happy. Can you see how happy I am? Kisses. So many kisses. You smell minty. I will follow you everywhere. But why are you talking in such a weird voice with me every now and then? That feels funny. I love you, too. Party in the house! I love those minutes. ‘’Cause it’s nine in the afternoon…’ Are we going outside now? They are preparing themselves. Mummy is getting the treat boxes for me and her. We never share them. Mummy is putting another patch on her. They smell weird, so artificial. I wouldn’t want them. Probably I am too furry for them anyway. Wonderful, the little one joins us today! Most often we are walking without her. We are going outside. No, we are getting in the thing with the wheels. It never talks, but it is very nice, it always takes us to nice places. Well, almost. There were times we sat in there for so long. That was so boring. And I had to listen to the same melodies all over again.
That’s the little one and me. I am the white thing.
And then we arrived somewhere, where everyone was talking in a different language. I don’t like the dogs there. They are so snobbish. But there were two really nice woman and two cool men. They looked after me when the older human had to be with the younger one in the hospital. I hate that place. I can’t see the little one when she is in there. Sometimes she stays there for many weeks. I wonder what she is doing there? I assume it should help her with the problems she has with her body, but she never comes back any better. What a waste of time. I love sitting in the back, especially when the wind blows in. I am the king of the world! Can you see how my beautiful fur is sparkling in the sunlight? And I have such a long tongue.
I can smell grass. Fiiiiiiields, I can run. See, how I can jump and run and lay down and jump again. Are you looking? Why are you talking to each other, why are looking s serious again? Look at me! Why is she sitting down again? She has a stamina like a poodle. I can smell something. It smells tasty! Oh, there is a lady dog! Heeello! She smells like hemp. I like hemp. The younger one likes it, too. And she smells like flowers. Can we play together? Look at me. Can you zigzag like that as well? And can you give the paw, too? Well, you look great, but you are really boring. Bye. ‘Such Evita!’ We are playing this game again. I have to find her. She is hiding behind a tree. I don’t find that funny at all. I am always really worried. But I do get some treats afterwards.
That’s me when I run. I am really fast.
The humans are talking with the top human of the other one of my kind. That isn’t true. I am not a puppy! I am almost an adult. I can even dig holes.
What is this? They haven’t been here yesterday! I am barking you away. Don’t you dare coming any nearer. I will protect my sheep! Weird, they don’t move! The humans calm me down. Apparently they are only ‘Heuballen’.
I don’t want to go back. Nope. I am laying down here. You can’t get me into this thing again. Ok, I come. She isn’t well again. I am walking with you now, slowly. Mummy is taking over. Well, I can be a bad boy then. Just for bit. I am still a dog. Poor thing. Who is this Prof Sollinger? What kind of miracle is this autotranplanation? Autotransplantatation? Whatever. It sounds delicious. Maybe it is a really yummy food and then she can run again. With me. Through the forests. That’s where we belong.
What? Did I hear ‘Fressschen’? Dinner time. I am looking forward to it, can you see it? That’s so yummy. And you even hold the food such that I don’t have to bow down. Thanks so much. OMG. I am getting some fish as well. I love you. You are so kind. That must have been difficult to get! Can I have the whole bowl, please. You are stroking me. You are my favourite human. I will follow you everywhere. ‘Mein Kleiner’ that must mean, that I am massive, right? Why is she laying down in my sleeping place again. Never mind, I like the cool floor more anyway. I am laying down beside you. I love you. I clean myself for you, see! So many cuddles. She is getting up again. Oh, I can smell something bad. Not good. Hello! You will fall down in a bit. I should better bark to let mummy know! Hello, hello, help! Why is she doing that all the time? It isn’t funny! Well, I will look after you. I think it was your blood sugar level again. Forever and always. I am your companion.
Herzlichen Dank an die JugendKunstWerkstatt Koblenz e.V., an all die (ehemaligen) Artisten und das Publikum der Benefizveranstaltung. Ich hätte niemals gedacht, dass eine so große Summe an Spenden zusammenkommen würde! Unfassbar!
Noch glücklicher macht es mich zu wissen welchen großen Spaß ihr hattet!
Ich freue mich schon auf den Tag an dem ich mein Einrad wieder bei euch fahren kann!
An alle Koblenzer, die JuKuWe bietet ein riesiges Angebot für Kinder, Jugendliche und (junge) Erwachsene. Ob Bauspielplatz, Circus Bambini, Workshops oder Handwerk, Zeichenkurse etc. super Projekte.
Many thanks to JuKuWe Koblenz, to all the involved artists and the audience. I would have never expected such a considerable number of donations! It makes me even happier to know that everyone had a lot of fun!
Oh, what a circus! A circus is a wonderful place. Thank you, Circus Bambini, for your wonderful support charity show! Full of passion, creativity and fun.
after the long-awaited ‘pain therapy’ 9/10
But the medical circus around me has to stop now. The current situation doesn’t need any comments. I hope the Muppet Show is over soon. The only update I can give is that they shifted the injections to last Tuesday. The pain specialist also decided to do some neuromodulation and sent 5kHz through the intercostal nerve in my renal area. Now the pain is even worse and I have some new pain, too. Two lidocaine patches cover my back now. It can be increased up to four, so I don’t need to be worried. That leads me to the following, I would like to talk about some serious manner: Pain. This might hurt.
Do you know how many nerves there are in your body?* Surely, everybody knows when he/she is in pain. But what exactly is pain?
Pain is an unpleasant sensation associated with an actual or potential damage.
No two beings can feel the same pain. Everyone has a different pain threshold. It is highly subjective. This makes it so difficult to define and understand. In medicine, it is a symptom with an underlying condition. In my eyes, one should treat its roots, not the symptoms. But many doctors see that differently.
A good doctor will listen to a full description of the patient’s pain. A good doctor knows that a three hour consultation is better than a three hour (manipulating) ultrasound scan. It can reveal important answers. The location, intensity, duration, frequency, its triggers… How does it feel like? Is it stabbing? Dull? Sharp? Tingling? Burning? Is it changing? Can you increase or decrease it? With heat or cold, movement or rest, massages or pressures… Ironically, you have to get into touch with your body to feel it accurately enough, the more intense the better, and find the right words to describe it. Sometimes a little adjective can change the world. Within a few questions one can find out whether it is muscular, joint, neuropathic, inflammation or visceral pain…
How can one measure pain? There are the known numerical and visual scales 0-10 (but what on earth is the difference between a 4 and a 7?), the McGill Pain Questionnaire, weird (unethical) tests… Recently, I came across the ’20 most painful conditions’. Bullocks. But you can’t put them in an order (I’ll come back to its similarity with imaginary numbers soon). Only someone who has had all these illnesses under the same conditions at the same time (and if they were non interacting) could reveal the order. It’s more complicated than measuring entanglement.
What I have definitely learnt is that one needs to show the pain. Otherwise the doctors won’t understand (and even then they might not get it). Don’t be shy with it. But yes, I admit it, I don’t follow that myself. It’s not about being brave or that I feel uncomfortable with it, but, basically, it has brought me here. When I am in so much pain that I cannot even talk or answer any questions, I am dependant on the EQ of the doctor in charge.
Pain is produced in the brain. Yes, the source of the pain is, say in your hand, but it gets transferred through peripheral nerves to your spinal chord, to your brain, which interprets the information and then sends chemicals or triggers to response. When you are such a brainy person as me it is gruelling to know that I simply can’t control it. I can calculate the flow through the renal vein and write its Poiseuille equation, I can explain the chemical process of nociception, I can meditate like the Buddha, but it won’t change anything. So is it all in my head? This remind me of Dumbledore’s ‘Of course it is happening inside your head, Harry, but why on Earth should that mean that it’s not real?’ It still has a meaning. Just because something is imaginary doesn’t mean that it can’t affect your life (in fact without imaginary numbers nothing would exist). To everyone with chronic pain: The pain you feel does only exist in you (in some sense one could say it is only in your head), no one else can exactly relate, no one else can perceive it, but it is real to you. Your body affects your brain, but your brain controls your body. Studies suggest that we can reduce the amount of pain if we process it differently. They have shown that meditators have far higher thresholds for externally induced pain than those who don’t practise any meditation. There is some really interesting research going on to investigate the brain mechanisms involved in that. Apparently mindfulness is related to a greater deactivation of the posterior cingulate cortex.
Some methods which helped me are physical exercise and therapy, herbal remedies, TENS, meditation, muscle relaxation, TRE, some heat here and some cold there, the right breathing techniques and positions and of course distraction. But they only provide a slight support. It won’t take the edge off. I am dependant on medications. And opioids have their side effects, too. They shouldn’t be used in the long-term anyway. One can also try to actively migrate the pain. When the nurses need several attempts to get some blood, I am relieved every now and then. Then the pain moves from my flank somewhere else, cause the eye of focus has changed. I have been through some meditation sessions where I was able to diffuse the pain at least a bit. It does definitely work with my right leg, which makes me wondering whether one can alter blood flow via meditation… Music helps**. But it is not the melody or lyrics, it is the personal meaning of the songs which provide relief. I can live again***. It needs to be mentioned, being alive and to live are different things. Life shouldn’t be a burden.
Mindfulnessmeditation can help up to a certain level, too:
Step 1: Stabilise your mind. Ground yourself.
Step 2: Feel through the parts of your body. Body scan. Identify the area where you feel pain.
Step 3: Focus your mind to the pain only in the specific area.
Step 4: Does the pain sensation change? Does it migrate?
Step 5: Notice it, accept it. Move on. Observe it without wanting to change anything.
Step 6: Concentrate on your breathing. With each breath accept it more.
Note that being mindful means to pay attention to something on purpose and with eyes that open for the first time. Unconditional acceptance. No judgments. You will become superior, because you are focused, you are aware of it. The response will alter. Undoubtedly, you don’t want to have pain, but if we act with aggressiveness, disgust or fear or tend to ignore it completely, you will only feed the pain even more. Sometimes I am even able to untie my pain and transform it into some tickling. I am in control then.
The body is deeply connected. When Dr P decided to do some neuromodulation between T1/2 (so between the rips in my back) I felt the pain in my lower abdomen. Nerves are amazing little gnomes. Mindfulness taught me to be curious about my pain rather than to see it as an enemy.
Nervus Molestus: ‘Hey guys, here we go again! Sending red signal! Alert! Alert!’
Nervus Tranquilus: ‘Man, don’t you want to go on holiday for a while, you are so damn annoying.’
Brain: ‘Noted. Transferring.’
Nervus Molestus: ‘Yeah. Could you even send some more!’
Stomach: ‘Stomach to brain. I could need some help down here.’
Brain: ‘Sorry, I am too busy with Ms Flank again. Can’t you look after yourself for once.’
Flank: ‘Stab. Stab. Stab.’
Eyes: ‘Flank you will sleep soon. IR morphine on its way.’
Flank: ‘No medication can stop me. MWHAHAHA.’
Heart: ‘Guys, please calm down. So much stress again.’
Brain: ‘Chest pain.’ *panic*
Circulatory system: ‘Blood pressure drop. Alert. Alert. Down to 65/40.’
Stomach: ‘Sending nausea attach. Stop playing the main role, flank. I am here as well!’
Flank: ‘I love being the villain. I will come back even stronger!’
Brain: ‘Stop flank!’ Not Delivered.
Brain: ‘Stop flank!’ Not Delivered. No Signal.
Brain: ‘Guys, it isn’t working, I am sorry.’
Nervus Tranquilus: ‘Why can’t I work for another body, This girl is only 22. Will I need to suffer my whole life and do that shit job? I need a salary increase.’
Bowel: ‘Shit is my job!’
Hippocampus: ‘Indeed, neurons are the longest living cells in the body. But you might die during migration or differentiation.’
Brain: ‘Well, I would like to solve some complex maths problems again, too – without you guys annoying me all the time.’
Right leg: ‘Shut up. I am not getting enough blood flow. I have been silent for a while now. Sending alert!’
Brain: ‘Noticed. Leg pain.’
Bones: ‘We need more calcium.’
Diaphragm: ‘Too much going on here. Spasms.’
Lungs: ‘Man, we need to brea—’
Eyes: ‘Everything is spinning. Oh what wonderful sparkling stars. And all the dinosaurs, there is even a purple blooming —’
Brain: ‘Shut up. Eyelids, contract!’
Bowel: ‘I don’t want to interfere, but I have just calmed down. I don’t care if you need pain relief. I will answer with constipation again. Your choice.’
Kidneys and liver: ‘Oh, shut up. You don’t have to take care of the elimination of all the trash.’
Legs: ‘We really want to run again.’
Brain: ‘Don’t be stupid.’
Flank: ‘Stab. Stab.Sta. St. S…’ Opioid receptors.
Left renal vein: ‘I am still here. Hey, I am still here. HELLO!!! You can ignore me for a bit, but I am still here.’
Blood clots: ‘We can’t be stopped, holy vein!’
Brain: ‘Wait, I’d ————‘
… Dancing in the moonlight, everyBODY.
Overload. Overload. Shut down.
Skin: ‘I can feel something wet on me.’
Eyes: ‘There is this massive marshmallow again.’
Slowing getting back from the dead. Hey Bo, the circle starts again.
Cerebral cortex: ‘I really wonder what organs decided that they could talk?’
One would think that people don’t need to live in pain nowadays. But we do receive letters saying ‘but there is probably little else I can suggest’ or ‘needs to accept that symptoms won’t resolve’ (I am still waiting for that message from the green island, but at the moment their strategy is to give vague answers and force me to wait for the waiting of the waiting). Sure, pain doctors can easily accept it, they don’t need to live with it. They can look into our eyes and assume how capable we are of doing that. Surely, I don’t have to emphasise again that the surgery I had was the wrong decision. But if doctors refuse to help or simply don’t get that we would do everything for pain relief one shouldn’t be surprised when patients undergo risky surgeries.
Pain motivates us to act in a certain way. If I touch a heating surface and feel burning pain I withdraw my hands and don’t get burnt. It saves me. Pain can warn us. In fact, I remove my hand before I even perceive it. So far to acute pain. Then there is also chronic pain. He puts himself in the overprotective role, but actually (most often) doesn’t provide any protective task. When chronic pain, severe chronic pain, mixes with acute pain, it becomes dangerous. How shall I know when something is really going wrong? Is it just another pain spike?
When I take the immediate release opioids during pain spikes and I can feel the effect half an hour later I am so grateful to feel better, that I feel like flying. I don’t think that I am high then (although I can’t really relate as I have never taken any recreational drugs except one time where the hemp cookies were bit too much for Ms Petite.), but I can’t talk, I don’t even want to talk. To a certain extend it doesn’t change anything: I am still lying on the floor apathetically I give all of my attention to the fact that it is manageable. I cannot even charge my body, as I can merely shift the level from the negative towards my vacuum energy. The Heisenberg Uncertainty Principle which exits in my body allows a very high value. I don’t even think that my hbar is a constant. There is some really weird underlying running.
Pain is my biggest fear. I am not afraid that the vessels get fully blocked which would need immediate surgery. I am not afraid to die. Pain is my biggest fear. It blocks me out. I am afraid of the day I simply can’t manage it anymore and the pain starts to control me. I am afraid of the day my loved ones have to witness how strong Vita can’t tolerate it anymore.
Then, there is physical and emotional pain. As most of us chronic pain patients I have been through all the psychological assessments, dream journeys and consultations of self-management. I would lie if I didn’t commit that the physical pain causes emotional pain and that emotional stress can increase the physical pain or rather lower my threshold. However, I still think, that one should differentiate between them. The pain’s source is not due to an emotional cause. The illness taught me the most important life lessons, too. I am not as naive anymore as I used to be, I appreciate things more, I have a better connection to the emotional wellbeing of others. I don’t trust people. That is sad, but quite helpful in everyday life.
There exists the wrong assumption, that the more we experience it, the stronger we get to combat it. Sure, I adapt, I can become used to it. Again and again and again. But it takes so much energy and the pain feeds from the little energy left.
If we want to reduce the pain, we have to decrease the danger, or increase the feeling of safety and comfortability. We can use medications, local anaesthetics, stimulate our own mechanisms (see before). How can we do that most efficiently? Right, we have to understand the roots of the pain. But if we can’t understand it, if we can’t even find it, we can either convince ourselves that everything is in our heads or we can only do our best at tricking our body. Surrounded by the right people we can find us as comfortable as it can be, we can accept it, find our own techniques, adapt our work and social life and set realistic goals, distract ourselves, fix what we can fix, live with it…(?)
There is a woman who cannot feel pain due to a rare gene mutation. She keeps smiling throughout the chilli challenge. They also call it the happy gene. It would be interesting to see whether this could be used to invent some new type of pain medication. For people who can’t feel pain, how would you describe it to them? The exact feeling. It is difficult.
For me it is agonising, stabbing, high frequency pain as if someone would constantly follow me and stab into my flank and abdomen. I lay there, look at the ceiling, listen to my mum talking about something (probably trying to strengthen me), but I just cannot process anything. I cannot answer any questions, I cannot communicate in how much pain I am in. It is so demanding and exhausting. The world around me dissipates. I want to run away from it, but cannot move. There are times I can put my brave mask on, my mind forces me to do it since I don’t want the people around me to get lost in such helplessness. That would even cause more (emotional) pain for them and me. Pain interferes with everything, destructively. It isn’t surprising that I crumble down in the foetal position, it is the position I was when life was still ok, I wish to be back to that minimum. A time I didn’t know about all those horrible conditions.
I imagine pain as a complex spin network of nerves, pathways through the spinal cord and brain. A crazier and more complicated intersection than several mini-roundabouts encircling sub-roundabouts which themselves encircle a central roundabout with crossings and bridges and tunnels and one-ways. On each road there are different speeds and rules, some streets are damaged, some are being rebuilt, some are busy, some are empty, on some there are difficult weather conditions, heavy thunderstorms, some are suitable for sunny Sunday road trips… An army of the best stormtroopers wouldn’t be able to provide the necessary control. It is like being stuck at the station, alone, you get on a train, you drive, get off and find yourself back at the same station. I am falling and falling without reaching the ground, I am in an alien phase somewhere in between nowhere, I could be lifted up to the refreshing grass or keep falling even more. In an inflamed, turbulent and toxic sea of heavy blankets you can’t escape from. Then I am forced to go somewhere else, sometimes the pain takes me, sometimes I go there on purpose. It is a much deeper place, where I trained myself to cope with it. In times where it is so excruciating, I am stuck in a not so pleasurable garden. With flowers which bloom more if you don’t water them and which get stronger in the coldest GOT winter and with trees which breathe away the oxygen, where the sun is cooling the floor and the moss is spiky and hard. If you get bullshit you cannot plant a royal garden.
It might be more useful to draw (the line) or to sum it. This one note, it is always there. Always. Maybe I should get some spray cans… Finally, it also mimics the active/passive interpretation of a coordinate transformation on a topological manifold. I am imprisoned in my own body. I do see the light outside, but my vessels are attached to heavy wires and chains.
In the last three years I have come to a point where I understand my body better. I am my own master at hiding and managing. At least most of the time.
No pain, no gain, I should be a billionaire by now and could happily invest in the research on vascular compressions and motility disorders, get all of us flown to the US to have a surgery which will finally bring relief. I would like to say that attitude can change the development of chronic illness. The more positive your are, the more you will be able to change it. But I would lie. I am sick of it. I tell people ‘You are strong, you will survive that! Don’t stop fighting! There is hope!’ But how on Earth am I entitled to say that? Vascular compressions and the surgeries are far too unpredictable. By now, most of the others with similar conditions I got to know, made friends with or whose fights I follow, have sadly passed away, are awaiting further surgery or suffering every single day as well. Everywhere is lack of support, lack of knowledge, hopelessness, disappointments… More horror than a human can handle. I have been having some really hard days, I don’t know where to put all my anger. I am still..
If my pain level allowed it I would laugh about the current situation. It is beyond ridiculous. Discombobulated. Gardyloo!
I would like to share some of my latest thoughts.
The pain is beyond manageable. The knife stabbings in my flank are getting deeper and longer, my whole kidney area is spastic. I am slowly going crazy. I started typing this post last week, but I wasn’t able to finish it, so it might be a bit confusing. I also feel so exhausted and drowsy. I was allowed to start the opioid yesterday again, but it only takes the edge off a tiny bit.
This week I had the full transit study which meant I had to eat some radioactive mashed potato on Monday, followed by an hour long scan to look at the gastric emptying, then every hour a 10min scan for the smaller bowel and then every morning one scan for the larger bowel. This test could give some really important answers. But, it also meant that I had to do a drug withdrawal in my room as I wasn’t allowed to take anything for the transit test and that I had a nice humpy bumpy ride to the hospital and a humpy bumpy journey back. Of course, my flank didn’t decide to cooperate. The times the patient transport arrived I had quite interesting conversations. Ever since I haven’t been able to run or skate through London anymore I do have to be honest, London is disgusting and beautiful, both at the same time, just one side street apart. Aaugh.
Last week I had to visit A and E again, I was advised to always go to hospital A. Well, at least they know me there. I saw my GP prior and I did consider to go back home and crawl up in bed, but the pain was just too much, my heart has been going crazy the past weeks as well and it could always be the case that something dangerous is going on in my kidney area. Welcome to the Muppet Show. Groundhog day. First nurse, checks my vitals, asks what’s wrong. Waiting. Second nurse, checks my vitals, ’Is your blood pressure always that low?’ – ‘Yes, it is.’ – ‘Well, I will measure it again.’ – ‘Ok, that is too low.’ – ‘I haven’t heard of your conditions. Can you explain?’ – ‘Well, basically my vessels in my abdomen and kidney are/were crushed, I had surgery in 2017 and now my left renal vein is compressed again. I am in severe left flank and abdominal pain. You can contact the vascular team.’ She then told me that I would be admitted to hospital A the following week. I hadn’t been informed about that, plus I had the transit studies at hospital B last week. I had some hope that I would be admitted to the pain unit as I am still waiting for the injections which they wanted to do a couple of weeks ago (and are now scheduled for mid June). However, it turned out that it would have been for the gastro ward, but the gastro team at hospital C are also waiting for a free bed for my nutritional assessment there.
Buddha, I just want to have some pain relief. I don’t want to be at three hospitals at the same time. Dr P who promised to start the treatment hasn’t come back to me at all, Dr D is waiting for Dr P to do something, Dr T is waiting for a bed, Dr B regarding POTS is scheduled for June, so there is nothing happening at all, but Dr H who agreed to do the lidocaine test if the pain treatment under Dr P isn’t successful (which hasn’t started yet, but the lidocaine test whose result I could send to the US to Dr R wold be very helpful*) luckily referred me to Dr G who at least started the neurostimulation. So far it hasn’t helped with the flank pain, but it still gives valuable information. It is a pen-like device with provides electrical stimulation for the nervous tissue. It can be used to identify and localise the pain and might even bring some relief. It would be wonderful if it worked, as it is non-invasive and far better than the opioids (it kind of trains the body to disperse opioid peptides). As the pen doesn’t do anything for my flank, it proves that the pain is not neuropathic. I will have a follow-up with Dr G on Tuesday, so fingers crossed. I need some immediate help now. Somehow it doesn’t reach the pain, it is too deep. On the other hand, it even penetrates to my left lower abdomen, but still keeps the renal part untouched. On the right side it just penetrates through. I have also started using a normal TENS device** which helps a bit with the diffuse abdominal pain and lower back pain, which I describe as ‘normal pain’. The pain in my flank and left abdomen is a ‘fucking-excruciating-stabbing-sharp-beyond-words’. I really wait for the day pain can be transferred to doctors. If they just felt the pain for a few seconds, they wouldn’t wait that long. There must be a better way to analyse pain. I am a scientist, so I will continue to experiment with different modes and frequencies and guide my wonderful lab assistant mum.
Back to A and E – waiting for someone of the vascular team. Sitting in the chair is simply not possible, I ask whether I can lay down somewhere, no bed is free. Pain is getting worse. Cannot tolerate it anymore, I lay down on the floor. I get told that it isn’t allowed. I sit against the wall. The vampires want some blood. They bite a few times and cannot get any blood, Dracula needs to be called, it drops slowly. My arm is full of blue and green bruises now. It matches the giraffe*** on my stomach, she needs grass and water. ECG. They want to repeat it several times because of the significant up and downs of my pulse in the past weeks. They didn’t repeat it once and even sent me home with the electrodes. Waiting. Vascular woman comes, but cannot do anything. I get some morphine. People are very funny at A and E. Police men who look after a couple who are under drugs, a confused woman who runs up and down the corridor (stops when she sees me on the floor and laughs at me), a whole African family who visits the woman next to me, two brothers who repetitively ask whether they can get to the private unit (it is A and E, guys!) and discuss how much fun the caviar and champagne was the other night, another guy in hand cuffs…Owl. Sometimes I just want the production staff to end the Vita Show.
I get told that it is difficult to do anything as it is chronic pain. Yes, I know, it is chronic pain, I can’t be that bad, right? We have to wait for the other tests and my admission. At least they will chase Dr P now.
Don’t get me wrong, I am grateful for the medical support, but I do I think that there is a huge problem with the NHS. The waiting times for tests, admissions and consultations are too long. I am properly pampered from Germany and I know that they try to get everything urgently for me, but when you are in pain, waiting is always long and it doesn’t solve anything. But one is too occupied with brexiting, there is just not enough time or money to improve the health care system. Priorities.
By the way, I had another phone call with a medicine journalist from Germany. I hope that we will be able to raise more awareness on rare conditions (which aren’t so rare in the end) such as vascular compressions, the lack of knowledge in diagnoses and treatment options, the lack of specialists, the danger of invasive surgeries etc. Something needs to change here.
The morphine worked for half an hour, then the pain returned. Discharged and with the tube (not the feeding one) back to the accommodation. Nauseous. In tremendous pain. Almost fainted a couple of times again. Well that was fun.
Exactly the same happened again two days ago. Life could be so wonderful.
Straight Rolling Bridge
When I got finally some relief the sun was raising and I looked outside to the canal and the Rolling Bridge. I had so many runs from Camden Market along Primrose Hill to Little Venice, but I have never seen her rolled. Actually it is a curling, not a rolling bridge. She is beautiful. If curled up one wouldn’t expect what she can offer. Ironically, my playlist played ‘Bridge Over Troubled Water’.
Windows are great. But bridges are even better. A bridge can even have windows. People love bridges. I remember when I came to London in 2015 I wanted to run over all the bridges (starting with the HP bridge of course) until I forgot on what side of the river I was and kept running South just to ask some partying people in the middle of night how I would get back to Camden… Holy topology, I miss those days. Bridges are wonderful to climb, fantastic places to eat pizza, refreshing morning kisses and of course quite helpful. My most favourite bridges are suspension bridges. They are so effective. The cables transfer the weight over the towers to the anchor points at both sides. Compression and tension. Ouch. I am a bridge. I hope that I won’t buckle or snap soon.
When there is a bridge you are safe. It doesn’t matter what is going on below (as long as we just ignore the nonlinearity of dynamical systems). A bridge gives stability and connects to somewhere else, cities, countries, cultures… If I look at Water Lilies and Japanese Bridge I see something which could guide me, support me, a bridge over troubled water. Sure, the pond doesn’t look troubled at all, but I am such a young lady, how could there be so difficulties hiding behind the petals? I feel somewhere I feel comfortable. For short I see all the things I am missing right now. I am in nowhinere. The doctors can’t do much at the moment, I can’t properly plan and simply don’t know how things will develop. I would never give up, but right now I am struggling so much with the physical pain that it does effect my emotional wellbeing, too. There is no one who actually knows what is going on.
Of course, there is so much wonderful support around me. Thank you again for all the donations in the past weeks (including family B who collected a huge amount on a birthday party) and to Circus Bambini and Jukuwe who are currently practising for the charity show. When I was sitting at A and E last time I received some videos of your training and it made me very happy. Thank you to Andreas and Jutta who take care of Bo at the moment. Thank you to the people who understand our current situation with so much empathy.
But not even Bo can take the pain away. It shouldn’t be the case that I think of the morphine when Garfunkel sings of silver girl. How can bridges be so strong? It is all about dissipation or transferring the force i.e. distribute it evenly or move it somewhere strong. That’s what I need right now. I run. I walk. I crawl. But I don’t move. What is this kind of bridge? Is it some kind of Devil’s bridge? When we went to Tuscany last year we crossed the Ponte della Maddalena near Lucca. It isn’t impressive when you stand on it or cross it, but it is impressive to see it from below, combined with the reflections in the river. The legend says that Saint Julian was too lazy to build the bridge on his own and asked the Devil for help… I am my own bridge (and I don’t mean the position, but it does help with lower back pain as well).
In the end, a bridge stands for hope. The laws of physics don’t allow an infinite long bridge. One day I will have crossed it.
When the song was finished, I looked at you, mum. Totally exhausted laying at A and E. I don’t know how you do it. I deeply hope that you will have a normal life at some point, too. People with a chronic illness and their supporting close ones don’t just walk on one bridge, they simultaneously have to cross many different bridges. It is exhausting, believe me. Finding the right way through this maze would have been a nightmare for Euler. I am still trying to solve that riddle.
That makes me want to read ‘The Bridge’ by Iain Banks again, one doesn’t know where the boundary between dream and reality there is as well. I believe(d) that it won’t be such a long bridge, but it really seems to go on forever. I do a lot, I try a lot, but nothing makes any difference.
*If anyone knows about urologists in Europe who can do the test, please let me know.
**I will go into detail about how to use them soon.
***Fun facts 2 about Giraffa camelopardalis (already in the name!): They only drink once every few days, most of their veggies give them enough water. No wonder, it doesn’t look as if they have an easy job. However, they wouldn’t have any problems licking out the soya milk foam in the chicory coffee. Most of the day is actually occupied with eating, they eat about one Evita veggie equivalent per day. They are fast. Immediately after birth they can run. I might be small, but I do possess some giraffe genes. I could use some of their one way valves, too. They also faint if they stand up too quickly. Do animals develop those vascular compressions as well? I really hope they don’t. (see fun fact about hedgehogs here)