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Evita's Medical Fund

£22,275 of £100,000 goal

Raised by 187 people in 5 months
Created March 16, 2019
For more information please have a look at https://vitaslittlejourney.wordpress.com  

Hi,

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 and exploring hidden places. 

Never having experienced any forms of major illnesses before, my struggle started in summer 2016.  Months of pain and various other symptoms, starving and complete desperation followed, led to the diagnosis of vascular compression syndromes, surgeries and post-op complications/pain. An the journey isn’t over yet.

I suffer(ed) from 

- vascular compression syndromes (MALS, NCS, MTS)
- motility disorder 

- chronic abdominal pain
- severe left flank pain
- chronic nausea, vomiting
- severe weight loss, malnutrition >>10kg
- circulatory problems

- severe weakness and fainting 
- irregular bowel habits 
- pain in my right leg

...and many other symptoms 

The next step is to treat (again) Nutcracker syndrome.

---

In September 2016 everything started with abdominal pain. It was a really uncomfortable feeling at the same spot 24/7. Eating made it even worse as the pain became much sharper and it was added by heavy cramps. The doctors couldn’t find out what was wrong. I had several A&E visits, but nobody could help me with the pain. From Winter onwards, I also suffered from severe constipation, chronic nausea and very uncomfortable bloating and distention of my abdomen. I flew back to Germany and spent some weeks at my local hospital in Koblenz, but the typical tests (MRI, colonoscopy) couldn’t reveal anything. So I went back to London. The pain and nausea got worse and worse. At that point I already lost about 5kg and felt that I got weaker. In March, I flew back to Germany to a hospital in Hamburg which specialises in gastrointestinal illnesses. The tests showed that I suffered from a motility disorder, but they couldn’t find its cause. I started taking a drug, which should speed up the motility. The constipation got better, but not the pain and nausea. I barely managed my day. I spent my nights without sleep, laying in  embryo position in the bathroom, vomiting and just hoped that I was soon over. I spent the days writing my exams in severe pain, chronic nausea, hungry and weak such that I collapsed a few times. I tried to eat as much as I could, but I lost more weight. In summer, I flew back to the specialised  hospital in Germany. But again, the tests just confirmed the motility disorder without a cause and the medication didn’t help. It was summer, I wasn’t able to work, was in too much pain and too underweight to do my beloved sports, had to cancel meetings with my friends, wasn’t able to stay in public  for long. In August, I had another stay at a hospital and an MRA could show a slight compression of my truncus coeliacus, suspected Dunbar syndrome/MALS (median arcuate ligament syndrome). We drove to a specialist in the diagnosis of vascular compression syndromes and during a duplex ultrasound scan he diagnosed me with MALS, Nutcracker, May Thurner, compression of the femoral veins, Vena Cava compression and a recommendation for surgery. At that time I wasn’t even able to eat two spoons of soup without pain, even drinking became difficult. Heavily underweight, malnourished and suffered from malabsorption. A diagnosis for an illness isn’t often relieving, but it was for me. I knew were the pain came from. Before a surgery I wanted to get a second opinion so I arranged another appointment and flew back to London to start my third year at uni. On the 3rd of November I went to Cambridge to visit the open day just to land in A&E again due to the feeling of numbness in my left leg. I consulted the specialist vascular surgeon I got recommended and was advised to flew back to Germany. Then everything went quite fast, I had the ‘big’ surgery on the 6th of November. I couldn’t wait to have finally no pain anymore. Now I am sitting here, after 15 months, still recovering from the surgeries, new and recurring symptoms, pain and nausea. The desperation forced me to agree to the surgery.

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They decompressed the truncus coeliacus, resected parts of my diaphragm and solar plexus to treat MALS, transposed my superior mesenteric artery and sewed in a vein patch of my left groin to treat NCS and elongated my right iliac artery with the other part of the vein patch to treat MTS. That means they cut my stomach open, from my sternum around the navel to my lower abdomen open, put aside my intestines and transposed/elongated etc the vessels. Unfortunately, the elongation didn’t work, such that I needed another surgery in order to treat an occlusion of a blood clot in my right iliac artery. They removed the vein patch and inserted a PTFE graft. I was in unbelievable amount of pain. They sent me back to the ward. Due to a mistake in the heparin perfusor (I got a heavy overdosis of that blood thinner), I needed another life-threatening emergency surgery because of acute bleeding in the surgical area two days later. Recovery from such a big surgery where multiple compressions are treated at once is hard. The other two surgeries made it even harder. If you want to know more about vascular compressions, please look at the website here .

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I returned to London in September 2018 to redo my third year.

As I still suffered from severe abdominal and flank pain and nausea, I consulted a vascular specialist here in London. Until December I was somehow able to manage the pain. Unfortunately, the pain  and nausea increased again such that I was unable to gain any weight and started losing weight again. The left flank pain has worsened a lot. It feels as if someone is stabbing a knife constantly in my back. Furthermore, in autumn, I was still able to hike, now I get tired or I am in so much pain that I have to lay down after a few minutes of walking. After MRV/A, a duplex ultrasound scan and a venogram I was again diagnosed with Nutcracker Syndrome. 

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It is called Nutcracker Syndrome as the left renal vein becomes compressed between the abdominal aorta and superior mesenteric artery or between the artery and the spine. The symptoms can vary. For me, it is severe left flank pain, abdominal pain, nausea and chronic fatigue symptoms. Due to the pain and nausea I lost again weight, such that I am  with 41kg again more than 10kg under normal weight.

A venoplasty without stenting and, if successful, an LRV transposition with patch grafting is planned with a surgeon from Imperial College London. Along with that a gastrointestinal and cardiological (for POTS) review is planned.  Due to my severe weakness and the constant high pain level with several spikes per day, I cannot manage the day alone anymore. I visited the A&E several times the last two months. Unfortunately, the only solution for NCS is surgery. In January, my mum had to come from Germany to support me.

Update: The LRV transposition wasn't possible. I want to undergo another surgery, a renal autotransplantation, in the US. This method has been successful for many patients suffering from NCS/LPHS even with former other surgeries. 

In the last 2,5 years we have spent tons of money on medication, medical tests (gastrointestinal, diagnosis of vascular compressions etc), transport  to various specialists in Germany (including several times Koblenz-Hamburg, Koblenz-Leipzig, Koblenz-Köln) and the transport between London and Germany via plane, car and bus, accommodation near the hospitals, high calorie drinks (as a semi-liquid diet is easier to digest), special food diets, physio and psychological treatment (the past years, especially the time at the hospital after the surgeries were both, physically and mentally, exhausting.)
In the past months I relied on the support of my mum. My student accommodation doesn’t provide enough space for us two and furthermore, we also have a (therapy)dog, Bo. Bo helps me a lot, he is still a puppy, but realises when the pain is much worse before anyone else does. As I tend to faint and my mother cannot be with me all the time, he takes care of me, when I am alone. Thus, we have to pay to rent (cheap) apartments in London, near the hospitals. I cannot walk far anymore, so she has to drive me to the hospitals and university, resulting in a big amount of costs for parking…and I could go on. I would be very grateful if you could read this, share it, raise awareness and maybe donate some money. Please text me if you want to transfer money via another method. If you have any advice for a short-term accommodation in London, we would be very grateful as well!

I am in pain every single second. If people ask me how I am, I answer ‘I am ok’ as I know it could be much worse, because it just got worse and worse the past 2,5 years. I am not ok.

Of course, a further surgery wouldn't be without risk. But I just want to have a normal life again, a life without pain.

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Thank you to everyone who has supported me in the past few months, on a medical and personal level. There aren't enough words for my gratitude. I am lucky to be alive and will keep fighting every day. 

If you want to donate something privately, you can reach me on vitaslittlejourney@gmail.com
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Dear all,

I am ok. The surgery didn't go as planned. The bomb was defused and the nut was cracked, but not like it was planned. Well, the past three years didn't go as planned. By now I am used to the unpredictability of life. The aneurysm at my transposed SMA was treated, but the autotransplantation (AT) didn't happen. Apparently, the left renal vein (LRV) was severely compressed by the aneurysm. The aneurysm was resected and a patch (from an ox, 2x9cm) was used to connect the SMA to the abdominal aorta. This time without a sharp kink (as in the first surgery), just straight down as it should be. Remember: A main abdominal artery shouldn't be transposed in the first place! Then they freed the LRV with its patch elongation from the right renal artery and the scar tissue from the last surgery. Thus, my Nutcracker Syndrome was treated. The aneurysm was on the verge of rupture. It wasn't huge, but compared to my tiny vessels it was massive, even bigger than my aorta. 
Thus, I am very grateful that the doctors in Freiburg made it so urgent and recommended to have the surgery ASAP. They basically gave me a third life.
It isn't great to have a ticking bomb in your body, but I do have to repeat: In my misfortune I always find fortune in the right moments.
However, I want to be honest, I am a bit frustrated that they decided against the AT during the surgery. Time will tell whether this was the right decision. I deeply hope that the pain won't return. If it did I would need another open surgery.
During the surgery they saw that my bowel was underperfused. That's why my bowel motility decreased so significantly the past months. 
The surgery wasn't an easy one of course, they had to cut through a lot of scar tissue, remove adhesions and had to find the 'wonderful' constructions from the previous surgeries. They did a really good job!

The first week was very, very hard. I am still in a lot of pain and very weak, have some problems here and there. But things are improving now. You can read more here https://wp.me/p9yTmm-by

I am very pleased with the medical staff here in Freiburg.

Thank you all for your wonderful, kind and creative wishes and encouraging words before and after the surgery. I am very touched.
It is a very hard time for me. But I can finally see some bright light.

Sunny wishes,
Vita
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First of all again a massive thank you to my old school MvLG in Koblenz that organised a charity run and collected more than 8,000 euros! I am very touched, happy and grateful, but also very proud of you! Read more here https://wp.me/p9yTmm-9U.

Unfortunately, I have to bring some rather bad, but somehow also good news. The CT with 3D reconstruction shows a 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. Thus, the plan is to be admitted at the university clinic in Freiburg next week. The transplant team and vascular team are planning the surgery. It is scheduled for the 12th of July! I am waiting for some other opinions, but so far the doctors whom I trust and have the experience agree. I will of course decide after I know the detailed surgery plan (so far: 1. renal autotransplantation 2. elimination of the aneurysm) and met the transplant and vascular teams.

Today I will be discharged from my local hospital. The parenteral nutrition pushed my weight up, the pain management hasn't really improved. The past weeks have been really hard. Yesterday it was at a 20 out of 10. I know how complex my body is, so I am very grateful for the cardiologist's support here!

I will spend the weekend at home with my mum and Bo to calm down a bit. I will send more updates as soon as possible.

I would have never thought that the surgery would be so near (both in temporal and spatial dimension). Read more here https://wp.me/p9yTmm-am.

Who knows, maybe Mr Nutcracker will soon be Prince Charming.

P.s.: We aren't sure whether it is possible to take Bo with us and my mum - after all the things that have happened in the past three years - wants to stay nearby the hospital for at least one week. If someone wants to stay at our flat 9.7-16.7+ and take care of Bo, please let us know (15/20min drive to Koblenz). There are forests and fields nearby, a good collection of books, notes and scientific publications; hemp and Bo's cuddles are truly the best.
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Dear all,

In the past weeks 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. Since I cannot be alone, need a proper pain therapy and nutritional assessment (and we had to move flat as well) we went back to Germany.
Today I was admitted in my local hospital for pain management and parenteral nutrition. I am very happy about this as I have struggled a lot in the past days.

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 in England and in Germany can’t help any further at the moment (except with some 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 - see the last update). I will have another CT (with 3D reconstruction) next week. If this one clearly shows the 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 explain more about the process and benefit of a renal autotransplantation here: https://wp.me/p9yTmm-7w .

It might be the case that my insurance will pay back parts of it, but due to the previous surgeries, the rareness and complexity of vascular compressions this is very complicated. I can assure that the donations are only used for my medical treatment. If I will be able to finance it through other ways I will donate the money to patients in similar conditions and research institutions that focus on vascular compressions/LPHS. But for now I have to increase my target.

I am forever grateful for your support, the medical, financial and personal one.
As much as I would love to bring this ‘little’ journey to an end I won’t ever forget those years with gratitude, pride and also joy.
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Dear all,

Thank you so much for your support! It makes me so grateful and proud to know that I am surrounded by such wonderful and supportive people!

With a very high probability I will need to have the surgery abroad. There aren’t many specialists here in Europe and due to my past surgeries no one here would have sufficient experience to do an autotransplantation on me (without the high risk that I wouldn’t survive this). Thus, I will need to raise more money.
Currently, I am trying to organise to have at least the lidocaine test done here in Europe. But even this is quite complicated.
If I end up with UW Health in Madison which is quite likely I will need to pay:
* Auto Renal Evaluation: $56,911.00, with 33% self-pay discount applied: $38,130.00
* Auto Renal Transplantation: $163,092.00, with 33% self-pay discount applied: $109,272.00.
* Total Estimated Charges, with 33% self-pay discount applied: $147,402.00 (=131520 Euro, 115860 Pound)
Full payment must be received to proceed with treatment. This is only the estimate they sent me, it could be more, it could be less. I will try to get most of the accepted evaluation done here, but without doubt that’s a hell of a lot of money.

At the moment I need to gain weight and find a way to control the pain more. Unfortunately, the latest injections and neuromodulation made it even worse. Despite the fact that I cannot confirm with 100% that I will have the surgery, I cannot wait that much longer. To raise enough money will take a while anyway.
I am so, so grateful for all the donations, but I do have to increase the target.

If things developed otherwise and some magic happened and I could have the surgery in Europe I would donate the money to other patients who are currently in the same position like me.

Hereby, I also want to say thank you to Jukuwe and Circus Bambini for their charity show tomorrow evening http://www.jukuwe.de and my old school Max-von-Laue-Gymnasium for the planned charity run during their sports festival next week https://mvlg.de. I hope you have as much fun as I had when I rode my unicycle or was on my runs through the forest in Koblenz.

Last Christmas my mum and me went to see the lights at Kew Gardens. In mids of the light-up flowers there was a wishing tree and everyone of you has already helped to make my mum’s wish come true. ‘A life without pain for Vita’.

All the best,
Evita


A garden to walk in and immensity to dream in - what more could he ask? A few flowers at his feet and above him the stars. (Victor Hugo)
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£22,275 of £100,000 goal

Raised by 187 people in 5 months
Created March 16, 2019
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