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Help Sarah

  • Health update

      9 March 2023
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    Thank you to every single one of you who donated and gave me a second shot at life. I will forever be grateful.

    I have worked so hard to get better after my operation and it wasn’t easy. This has been such a huge battle, this journey has definitely left me with a lot of trauma and sometimes it’s really hard to think about what I had to go through. But I’m alive and doing so much better. I have been able to gain healthy weight, enjoy life again and experience new things. Not quite ready or able to work yet, but that’s my next step ! fully recovery isn’t until one year post op, today is 9 months since my surgery! Im still working on strengthening my abdominal muscles, which will help a lot with my severe back pain. Everyday is different, some days I have flares and it can be very scary. Im always terrified of things going downhill, especially when my body decides it doesn’t want to tolerate any food. Thankfully I always bounce back. I still deal with daily pain, which will never go away because of my connective tissue disorder. It’s still a challenge to eat and sometimes it’s very exhausting, but I push through the pain everyday. I’m just grateful that there have been massive improvements.

    Once again, I am so grateful for all of you, thank you so much for your generosity. You are all amazing. Here’s an updated picture from Harry styles the other night

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  • Home and Travel

      4 July 2022
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    4.7.2022

    Hello all

    We arrived in Auckland yesterday afternoon we had been awake for what feels like forever. We snoozed on the plane but it is never a decent sleep. It was long and arduous for me so for Sarah it was at times a total nightmare. Wheelchair assist in all the airports was a total blessing. Düsseldorf airport was chaotic but once we sorted out a bag trolley and found the assistance checkin it was better. The queues were out the gate. The guy at assist said check in and come back, I was like no she cannot stand for that long. So we waited for a wheelchair and assist person and that was great as it made check in so much easier. The plane to Dubai was more spacious and we had an extra seat so Sarah could spread out.

    Thank goodness for wheelchair assist in Dubai. That airport is massive. Unfortunately the seats on the Boeing 777 are way more cramped and their was nowhere else available on the aircraft to have more space. We had a stopover in Kuala Lumpur where lots of passengers disembarked. After some discussion with the flight attendant and our neighbour kindly offering to change seats Sarah was able to spread out again. So relieved.

    We arrived in Auckland to another lovely assist person and finally got our bags and headed to our motel. We ordered in dinner and had a strangely patchy sleep. You would think that we would have slept through.

    We are now waiting at airport again to head home. Sarah is tired and feeling terrible today. She has swelling, dizziness and fatigue and surgery pain and all things no one wants. We have an appointment with our GP as soon as we arrive home to get the edema checked out.

    Waiting in the very hard airport chairs hoping there are no delays. I am sure after another flight and seeing the Doc Sarah will be ready for her bed

      3 comments  |  Login to leave a comment

    • 04/07/2022 by Colin

      Hang in there folks. I had to take two regional flights 5 days after my surgery; even that was tough - it's hard to imaging what flying international would be like. Be prepared for some PTSD (weird dreams, getting annoyed by things that aren't usually annoying). Just rest as quietly as you can for as long as you can, and take the pain meds; wheelchair assist is a lifeline, but things still get stirred up regardless. It gets better.

    • 04/07/2022 by Trish

      So pleased to hear that you are now back in NZ safe and sound, after an arduous journey home. Here’s hoping Sarah’s path to full recovery will go well. Thinking of you both with love, Trish & Rex x

    • 04/07/2022 by Shirley

      Rest up now, well done to you both, that was a massive trip 💕

  • Last days and heading home

      1 July 2022
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    Hi Family and Friends

    It’s our last night in Germany. We took the wheel chair back today and went to the clinic to see Regina.

    Before that we wondered around Düsseldorf looking for easy shopping. Not the easiest thing to do. We had a bit of a stroll down the Rhein and had small cup of gelato each.

    We looked at a few Plazas. Shopping is definitely different to home. I think it was too hot today and we are a bit over it and just want to get home.

    After walking for hours in very uneven terrain, cobblestone roads and paths are very bumpy, Sarah is sore and my feet are ded.

    We did have a nice day but so warm. Spending the evening packing and getting ready to check out.

    Part 2

    1/7/2022

    It has been a bit of a tough morning but we are on our way. We had to leave our accommodation by 11am and our flight leaves at 9.15pm so we booked into an airport hotel for the day. I could not see any advantage in Sarah sitting in an airport for hours and then a plane for more hours.

    Thankfully the room was really cheap and quiet and relaxing. They will probably find it weird when we check out early. But they get paid so that’s ok.

    I am feeling exhausted thinking about this long ride home. I cannot imaging how Sarah is feeling.

    Thanks for all your support we are so grateful xx God Bless

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  • Discharged after a quiet weekend

      28 June 2022
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    27 June 2022

    Hi wonderful supporters we hope you all had a terrific weekend. It was a slow weekend for us as Sarah and I really were looking for to being discharged. We came to the apartment and dropped off some things and Today Sarah was finally discharged from the hospital with a list of prescriptions and a reminder to go back to the hospital or email them if we have any concerns. We rented a wheelchair for the week and spent the morning searching out a couple of shops and having a snack before returning to the clinic to Say goodbye to Regina and John and have our last meeting with Dr Al-khayet. Professor Sandmann is on holiday and will not be back until after we have departed Germany.

    We say farewell to Clinic Bel Etage and thank you to the Doctors and wonderful nurses who have looked after Sarah for the last 25 or so days.

    We are now relaxing in our apartment enjoying the peace. Will miss having lattes and food being made for me and not having to clean.

    We are counting down the days till we get home.

      2 comments  |  Login to leave a comment

    • 28/06/2022 by Colin

      I went on a similar journey with a tumour attached to my spinal cord. I like to think of it as being like a horizontal escalator; you hop on it - it takes you for a journey - and you get to hop off it at the right time. It may not always be an enjoyable journey, but even when it's painful, it keeps you moving towards a wonderful destination. Sounds like the worst is over for Sarah (thank goodness); the only advice I can think of is "Don't be a hero - take the 'darn' pain meds!"; I did too much too soon - got there in the end, but with more pain meds I wouldn't have stirred things up so much and would have been more comfortable. Pain meds are your friend; and it's ok to lean on friends when you need them! All the best.

    • 28/06/2022 by Anne

      So pleased to hear the news. Won't be long before you're home; I bet you can't wait. Sending love and good wishes for your recovery. Anne and David xx

  • Happy Friday

      25 June 2022
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    24/6/2022

    Hi Guys

    Half way through Friday and Sarah is feeling better. 3 infusions of potassium received, 2 to go. Sarah had a green smoothie for lunch with a side of mash potatoes with salt for the POTS. All lunch food has a good quantity of potassium so hoping it all helps. Seems that once potassium drops it can be hard to maintain it. Great stuff NZ doctors who constantly say yeah it’s all good. Get to Germany and they confirm what you already know. Your blood results are borderline and need a massive helping hand, not surprising after a year and a half of not being able to retain and digest food.

    We went walking around the grounds again today. It’s good for helping healing especially with the fluid retention that Sarah has been dealing with. Fluid was causing swelling around hips and legs torso and arms. Also around her lungs. The medication of course means Sarah is up and down to the Loo constantly annoys her sometimes but it is what it is.

    All those bruises on Sarah’s legs are from the injections she gets everyday to protect against DV thrombosis they don’t use compression stockings or any post op pumps.

    Sarah is sleeping atm so will upload this and get some cleaning up done.

    Thanks everyone for your support and prayers.

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    • 27/06/2022 by Trish

      So good to see you up and about Sarah after your incredible journey through an unfamiliar medical system. But it’s looking good from here! Kia kaha and big hugs, Trish & Rex Bullard (Ella’s Mum) x

  • Finally able to Shower

      24 June 2022
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    23/06/2022

    Sarah had her central line removed today. Pulling that tape off is always the worst. Another step in the journey of removing All medical bits and bobs. Blood tests showed that potassium is still low so 5 infusions have been ordered. Definitely not getting out till Monday. Sarah has been feeling better this afternoon and finally was able to have her first shower since surgery. Blissfully refreshed although it requires all dressing to be changed but soon all wounds will be healed and this will be a normal daily function again

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  • Progressing

      24 June 2022
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    22/06/2022

    Pretty busy day yesterday and not a great day for Sarah with regard to pain. Prof Sandmann removed her running stitches on Sarah tummy. pretty painful by the look of it. After the epidural was switched off they came in later to remove the line from her back. So Sarah probably had the worst night last night maybe one hour of sleep. Pain meds just not helping. Pretty exhausted. Dr Al-Khayet gave her a tablet to relax her and she finally got some sleep this morning. Professor Sandmann has told Sarah he wants her to remain in clinic until Monday. This is probably the best decision but we have already booked and paid for our apartment and cannot cancel. So painful more accommodation paid for. Poor Sarah felt so guilty. Reassured her that what’s best for her is more important.

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  • Ups and downs

      24 June 2022
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    21/06/2022

    So everyday still has ups and downs. The weekend was pretty hard with fluid starting to build up and issues with the good ole number 2’s. When you are still managing pain with an epidural and not being able to really feel your poor cut up muscles working and your body is still dragging you between constipation and diarrhoea recovery can get a bit crappy. Today has been slightly better however having a rapid heart rate after brekkie that didn’t settle down and then throwing up really is upsetting for Sarah. We are thinking that perhaps the Bornavirus is causing the occasional issue with digestion. Strangely her heart rate settled after she vomited. Sarah has started the treatment for Bornavirus however we understand it is a long treatment. We went for a couple of walks around our floor today which was really good for Sarah and she is on medication to flush the excess fluid.

    After the second trip about the wards we went to see Regina, it was good to see her, she is doing well on day 6 post surgery.

    We have heard that we no longer need to run around town looking for and paying for RAT tests to come home. So pleased about that.

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  • Visits from Friends

      18 June 2022
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    It has been awesome having friends in the hospital from different parts of the world. In the pic is Alice from Iceland and Elayne from USA. Sarah has also spent time with Abby from Australia and Taylor from NZ. These beautiful people are all also recovering from compression surgery. The have suffered at the hands of Dr’s who don’t believe them or don’t know what to do with them or how to help them. When Sarah asked the NZ vascular surgeon who thankfully refused to operate on her if he would like the information from her Scan and surgery and information on Professor’s Scholbach and Sandmann he ignored her questions and said a very lame good luck. This is the same treatment many people with compression syndromes get from doctors. The girls sat around and discussed their experiences and it’s the same everywhere. This lack of care and arrogant pride should have no place in our medical systems. These doctors will leave our kids to die because they don’t believe them or understand their symptoms.

    These girls are awesome fighters and their Mum’s and Dads are fighters too.

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  • Eating small amounts

      18 June 2022
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    Sarah has been able to eat very small amounts without vomiting or pain. It has been an amazing change. She had a bad day when she ate tooo much to soon causing her to have a small vomit and a massive headache. The nurses were great and sorted out pain meds in a rapid infusion. The severe headache lasted only a short time and receded to a dull ache for a few hours. Pretty unpleasant but a bit of a reminder to take it slower. That really has been the worst day with food.

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  • The first few days post surgery

      18 June 2022
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    Hello all Sarah’s wonderful supporters

    Sarah has been doing really well post surgery. She is well medicated to manage her pain. She managed to drink water pain free and without vomiting for the first time in a very long time. I got very emotional at seeing Sarah have water without reacting to it. Sarah is being well looked after at the clinic and the accommodation and food is pretty good.

    The physio came to visit on day two and gave Sarah some breathing exercises to help clear her lungs. She has drains all over and a catheter as she is not allowed to get up yet. Due to her kidney being stabilised to her rib she has been immobilised for a day longer than most. On day 4 the physio got Sarah up and helped her to balance and Walk a little. She is doing so well. Thanks for all your support

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  • Finally Admitted

      15 June 2022
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    Hi from Clinic Bel Etage

    Sarah was finally admitted into Clinic Bel Etage on Wednesday 8 June. We were so ready to get this process underway. The waiting while necessary was difficult. Sarah tested positive for Bornavirus where she caught this virus is very confusing for us but at least it was found and can be treated. It is known to cause digestive issues and even death.

    On June 9 pretty early in the morning they came and took Sarah for her Surgery. She was calm on the outside, a nervous wreck on the inside but oh so brave. I too was excited and nervous. The surgery can take between 6 to 9 hours. Sarah was probably close to 6.

    While in surgery I met up with the other mums for coffee and had a cry and then took 3 weeks worth of Laundry to the laundromat. That was fun. A lovely young lady helped me and another newbie like me to work out how to operate the machines. She even gave me some laundry pods. She was so nice. Then I was able to help others who were confused by the system ha ha.

    I returned to the hospital shortly before being called to recovery where Sarah was totally out of it but doing well. So grateful, beyond words for everyone’s support.

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  • Postponed

      14 June 2022
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    Hello, we are sending greetings from Düsseldorf. I feel like I wrote this update already but cannot find it so. If I have doubled up sorry about that. We arrived in Düsseldorf on 1 May and travelled to clinic Bel Etage by another scary Taxi ride. Some of the cab drivers are literally terrifying. We had our appointment with Dr Sandmann who explained all the scan results. Due to clear markers in the scan Dr Scholbach believed Sarah has Bornavirus. So blood work was taken. Dr Sandmann advised against surgery until the results were received. A week later. Sarah was gutted. But we understood why and there was nothing to be done but find a place to stay for a week. Postponing was difficult but worked out for the best.

    An expensive endeavour. Another weeks accommodation and changing flights, it turns out a flex fare doesn’t mean a free flight change just that you can change the it. 🤣

    Sarah spent the week catching up with other patients and receiving daily fluids. The fluids were much needed.

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  • Frankfurt

      13 June 2022
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    Hello all

    We arrived back in Frankfurt for one night. Our hotel was about 600 metres from the train station, so we walked. Not the easiest thing with crowds of people and bumpy uneven cobblestone paths, beautiful but not the easiest for dragging your smaller wheeled heavy suitcase over. Sarah was pretty sick and exhausted so instead of going out to look around we rested. The next morning we got up early and found the lock bridge and added a travel lock ha ha not as cool as most of the other locks but gotta go with what you have. We also went to the old town square and a tower before heading back to the hotel and dragging our suitcases back over the rough terrain back to the train station to head to Düsseldorf to see Prof Sandmann and book into Clinic Bel Etage.

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  • Germany

      13 June 2022
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    Hi Sarah’s amazing supporters. Long overdue update. So after hours of hard travel flights and a train from Frankfurt to Leipzig we arrived at our apartment ha ha ha 5 flights of stairs NO lift. Glad we learnt that lesson before surgery. We looked around Leipzig a little and went to the Zoo. The Zoo was great but exhausting for Sarah.

    On the 31st we went to see Prof Scholbach for the scan. Amazing technology and what a lovely decent kind Dr who’s passion it is to help people like Sarah. Where are other Dr’s like this. Who want to push the boundaries and find ways to help instead of just shrugging their shoulders or has lighting the patient. He explained everything he saw as he performed the ultrasound and showed us the compressions and the effects they had on blood flow. Amazing. And passionate about the ability to see this in the body and to be able to help his patients. After seeing Dr Scholbach we headed for the train station and headed back to Frankfurt.

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    • 14/06/2022 by Carey Simpson

      I’m so excited for you to have this opportunity! And I’m glad you’ve got a gong to sound off the start of your new life, and farewell the bad stuff. Say goodbye to pain and progression. Not long now!! Wishing you the very best of luck and health and your move to the next phase of your wonderful life xx

  • Off to Germany

      26 May 2022
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    Hey guys! Mum and I left Palmy last night and arrived in Auckland, we stayed overnight. We are now currently in the air on our way to Dubai, we left just after 5pm. This flight is just over 19 hours long. We will get on another plane in Dubai and fly directly to Frankfurt. Then we will train to Leipzig. Again thank you all for the donations and helping me get to Germany, you are all amazing. And a huge thank you to my Uncle Mike who helped us so much with our flights to Germany, he’s so awesome !!

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  • Surgery update

      27 April 2022

    Hi everyone!

    My mum and I made the decision that I couldn’t put off booking surgery and my scan any longer. My health continues to plummet everyday, with new symptoms that are very concerning and pain that has to be managed by very strong pain killers. I’m booked in for my ultrasound on the 31st of May and instead of having to wait a week, Dr Sandmann will be booking me in for surgery on the 2nd of June.

    Still a month away! But so close and it’ll give us a little more time to save

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    • 27/04/2022 by Colin

      Wishing you all the best. Please please please create something like a Patreon account so we can all send you some money each month. A little - regularly - over a long time - REALLY adds up.

  • Rough estimate

      23 April 2022

    Hey all. This is a rough estimate of our goal at the moment. Which includes flights, hotels for before surgery and a week after, training from Leipzig to Düsseldorf and back. The ultrasound and surgery. Once we do have the complete write up of the surgery we will post a photo of how much they believe it’ll cost. It has been taking a while to receive the full estimate. Basing this off multiple people who have had the same surgery I’ll be having, it has been around $80,000 NZD just for the operation, not including all the other travelling fees

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  • Update

      13 April 2022

    Quick update!

    Passports have been sent out to be renewed. Still waiting to hear back about the estimate of how much everything will cost

    “The stay within our hospital clinic Bel Etage lasts usually about 14 days, the costs of the surgery and intensive treatment concerning postop nutrition, mobilization , medication etc will be send to you as an cost estimation plan” - email from my surgeon about what will be included in the fees. I’ll update everyone again once I’ve found out the cost. We are still hoping to go next month

      2 comments  |  Login to leave a comment

    • 13/04/2022 by Carey Simpson

      That’s so exciting Sarah!! Congratulations on getting to this step. You’ll be on your way to Germany in no time!

    • 13/04/2022 by Colin

      Hoping all goes well for you Sarah. Just a thought ... in addition to this give-a-little page, have you given any thought to setting up something like a Patreon page where anyone who would like to could automatically send a few $$$ your way each month?

  • Update - Ultrasound

      21 March 2022

    Hi all. We are so overwhelmed by all the generous donations. You are all so wonderful and my family and I are truly so grateful. I have been in contact with Dr Scholbach who does specialised ultrasounds. The ultrasound is around $5,000NZD. A lot of money, but the scan takes 2 hours or longer and they are very thorough. Not sure if you’ll be able to copy the link but I’ll post it anyway. It’s a link to dr Scholbach website, he explains how he does the ultrasound.

    https://scholbach.de/funktioneller-farbdoppler-ultraschall-wie-ich-ihn-verstehe#gsc.tab=0

    We are sorting passports and waiting to hear back from Dr Sandmann about how much the surgery will cost and then we will book my appointment for the ultrasound!

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  • Scans in Germany

      9 March 2022

    Hi all! I had my call with Prof.Sandmann early this morning. He was well informed and knew so much about these compressions. I need to contact his colleague and schedule a date for further scans, to make sure they are not missing any other compressions. After that I’ll book in for surgery, which would either be a couple days later or a week later. I’ll be in Germany for at least 3 weeks

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  • German specialist

      4 March 2022

    Hi all, thank you so much to everyone who has donated. I am so grateful. I contacted Dr Sandmann in Germany, who is the top specialist for vascular compressions. He looked through one of my CTA and could see more compressions than MALS. He believes I have nutcracker syndrome which is a compression in the left renal (kidney) vein, he can see both compression and tension. He also could see significant may-thurner syndrome, a compression in the left iliac vein. We are going to have a video call and he is recommending having a couple more specialised scans in Germany for another compression called SMAS, superior mesenteric artery syndrome and a scan to see how my kidneys are moving when I stand/sit. A condition called nephroptosis. But I need to research this condition more myself !

    I will update again after my call

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