Help Lance start living again

A rare condition

My husband Lance became ill 3 years ago. Being someone who has always been an avid sportsman and 'hands-on' Dad to our 3 kids, I never thought I would have to cope with critical illness and disability as his carer. I don’t suppose anyone does. I think you could probably say that it was love at first sight when we met; the world did seem to stop turning for a moment. I always loved the fact that he was such an inspirational person and that he always wanted to dance with me; even if the only place to do it was the kitchen. We used to go to Argentine Tango classes together: I would love to be able to do that again.

In the summer of 2018 Lance lost the use of his legs while on holiday in Portsmouth and was hospitalised. Baffling doctors then, it was suspected he had a blood disorder causing his blood to clot excessively as blood tests showed he had thrombosis. As his condition and pain worsened we endured a rollercoaster of scans and referrals trying to understand his condition. Finally we had a diagnosis that due to a birth defect in his Inferior Vena Cava (IVC: the main vein returning to the heart from the lower body) this has become completely blocked and that cascade clotting had occurred in all main veins from the torso downwards causing Chronic Venous Insufficiency. Doctors have informed me that they have never seen clotting to this extent in anyone throughout the UK in their medical experience.



 Hope

Happily, Lance was referred to specialists at Guys and St Thomas' Hospital in London (under whom he will remain for life) and made phenomenal personal efforts to walk and rehabilitate but the following year entailed further clotting despite anti-coagulation and he was in and out of hospital. He found that by continuing to train his body, it motivated him to keep going and helped him to feel positive despite his condition worsening.  The consultants said that he needed to maintain his fitness levels with the ambition to be able to walk 3.5 miles in readiness for surgery. At times Lance was struggling to even leave the house so this seemed an insurmountable task. Lance maintained that he still wanted to work, despite doctors advising otherwise and returned to his job within 6 months of diagnosis, attempting to contribute in some way albeit on a part time basis.

In April 2019 Mr PK Saha (Consultant Vascular Surgeon) performed lifesaving, revolutionary surgery to reconstruct his IVC using specially made aluminium mesh and to insert prolific stent networks in his lower torso and in the groin. This surgery carries a high mortality risk and that of permanent disablement or loss of limb and also entailed stenting through both hip joints and to the top of the legs, which has never been performed before. The 9 hour surgery revealed that all the original clots had remained in situ and caused ballooning of all veins which had to be broken through during the process.
 
The damage caused by all the blood clots is irreversible and Lance now suffers with a severe form of post-thrombotic syndrome and extensive nerve damage. This means that he is in constant crippling pain with an inability to mobilise which varies from day to day. He has used a walking frame and crutches since the surgery and has had to take large doses of morphine for the pain just to get by. Sometimes his legs would give out completely; likely due to nerve damage. He has been having physiotherapy but frequently had to start all over again; learning how to do things from scratch. Our home had to be adapted and Lance was wheelchair bound some of the time but made huge strides both emotionally and physically to be relatively pain free; reducing his medication down significantly by January 2020. Then COVID struck.

 
A downward spiral

While we were always confident Lance would keep battling to rehabilitate; the current state of his health is in need of drastic support. As the population began working from home; so did Lance, performing his role on the COVID response hub as part of Public Health in the local council. Before we realised the problem, it was too late. Months of him diligently sat at our dining table making calls to vulnerable people, no physio services, no gym, no hydrotherapy nor swimming facilities, meant that his hard won physical health was more fragile than we realised and the signs began to show. Still; in actuality, recovering from the ordeal of the onset of his condition and the surgery.

Suddenly he could no longer manage walks out with the family, he was falling more regularly; banging his head more frequently and his pain was increasing. As the pain increased he was able to move less and had to take more medication and so the downward spiral ensued. By Sept 2020 he was signed off by the doctor and was becoming less and less present in his own life. As further problems presented themselves, referrals to urology resulting in catheterisation requirements reduced his independence further and Lance became predominantly bed bound. When his condition is acute, the only thing he can do is lie flat.  Further concerns meant that Lance couldn’t be responsible for our children and by November 2020 I had to take some time away from my full time job to be at home for everyone; trying to manage my increasing stress levels.

He has chronic muscle wastage in his legs and the pain caused by lack of movement and loss of fat and muscle support to his pelvis, leaves him unable to move, speak, eat even; despite being on strong medication and on occasion means that he is audibly and visibly very distressed, which is heart-breaking for me. If I could take it away from him, even for some of the time, I would. The pain clinic at our hospital has been trying a variety of medication combinations to no effect.

In March 2021 our local NHS physio returned to work with Lance and expressed concerns about his motor functions and his considerably weakened state. Further referrals were made to neurology to assess nerve functionality. Due to the mixture of medication he was taking, Lance developed Serotonin Syndrome which caused hallucinations, vomiting and confusion. After a scary time of trying to balance out his core functions and a stripping back of all medication apart from a few key drugs we then encountered another development. I had to call an ambulance as Lance began fitting: violently shaking throughout his whole body and very close to respiratory arrest. Lance was discharged and referred again to neurology, this time to assess why the new symptom had begun. Doctors have initially suspected it is due to his central nervous system being in a heightened state as a result of being in chronic pain for so long; with brain signals going awry. We await this appointment in July 2021.

I am engaging with as many services as I can, communicating with doctors and supporting departments, Lance’s work, my work, social services, children’s school etc and I cannot fault the support we are getting. However, there is only so much that can be done when you are a family unit; the struggle exists behind closed doors. Every day is a worry and I quite often feel that I don’t want to leave Lance’s side, since these fits cause him further pain, particularly in his neck and I have to restrain him. Lance has suffered dreadfully with his mental health and has expressed sometimes that the pain makes him not want to wake up. You can imagine how this affects our children and how worrying it must be for them; my youngest was 3 when Lance fell ill and can’t remember him any other way. However, we do our best to keep them happy and healthy and we are all grateful to have each other.

Lance has been documenting his struggles via social media, which has given him much needed support and encouragement and this has also brought the world to his bedside.
 


So how can you help?

Exercise and compression are the only treatments which improve and alleviate Post Thrombotic Syndrome. There are a number of services and products which would make a huge difference to Lance, not available to him on the NHS.

Our physio and GP have made referrals for residential rehabilitation and with the spinal injuries centre since many of Lance’s symptoms would benefit from their expertise. However, both they and Lance’s consultant have agreed that these are unlikely to be successful due to the demand on services and also due to his condition being so unusual; in many cases, if it is not a recognised category of condition, you are a lower priority. Our physio has also tried to book hydrotherapy sessions for Lance with no success and currently visits us once every 2 weeks and does as much as he is able. When I can and now that leisure facilities are open,  I will continue to assist him to do some exercises but his fits make this very difficult for me to manage.

I am certain that an intensive rehabilitation program would be the difference between life and death for him, since at the moment he has no quality of life and his condition continues to worsen. His consultant has said the road will be long and hard and we have been here before with determination and hope but I fear that we are now in for an almost indefinite wait.
I have been researching the kind of program and facility needed and have been speaking with Steps  in Sheffield.  This intense support and facilities will improve his strength, mobility and ultimately his pain, since medication does not help. If we can just get him to the stage where he is able to support his own weight again; even with crutches, this will mean that he is well under way to gaining lower body control and we will have turned on his fast twitch muscles in the spine to support his core again. Research also shows that any person who has developed mobility issues or become wheelchair bound see a huge reduction in pain when able to walk upright, even for a limited time. The cost of this would be confirmed once he is assessed but likely to cost somewhere between £6,950 and £11,950 for a 28 day program depending on nursing needs. I would like to raise enough to enable him to stay for an eight to twelve week program.

To that same end, our physio has discussed the option of sourcing exo-skeleton products to assist Lance in his mobility, namely a product such as ReWalk , but which also requires specific rehab beforehand, available close to us at the Manchester Neurotherapy Centre . This would benefit Lance in a number of ways including: Decreased muscle spasticity, Decreased pain, better pain management, Reduction of some medications for certain ailments, Improved Mental Health, Improved bowel and bladder function, Increase of lean muscle mass, Improved body conditioning and Maintenance of bone mass density. The cost of this is between £49-61,000.

In addition; there are advanced compression devices also known as IPC’s  which aid muscle recovery by encouraging lymphatic drainage and supporting vein function. This could be something which would benefit him greatly while rehabilitating and something he did have access to in hospital. Some of these cost several thousand pounds but some suitable devices can be sourced for around £600.

Put simply, I want my husband back. My children need their Daddy and I refuse to watch him disappear before my eyes. If I don’t help him then no-one will. He’s so strong and so brave but everyone has their limits. If you can help in any way, or pass the message on to others, I would be eternally grateful. I cannot express to you how valued and how worthwhile your contribution would be; changing all our lives.


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See all

Organizer

Victoria Tremayne 
Organizer
Derbyshire Dales District, UK

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