Firstly, I must apologise for not writing for such a long time. I am very seriously ill at the moment. Secondly, sorry folks this is a very long blog!
After 6 years of living in Spain and continually being told that there is no such thing as APS, that I was a hypochondriac, being sent to see psychiatrist after psychiatrist for my "problems", even though I was diagnosed by the Prof himself in London in 1986 for Lupus and 1992 for APS! After my last stroke here in Spain (last September) they tried to send me home from A&E and told to take 2 paracetamol and a diazepam for my anxiety. At that point I couldn't speak; I was partially blind, unable to move my body and had no control over my bladder. If my husband had not been forceful insisting that I received a CAT scan I don't think that I would be sitting here today to tell you the entire tale. So that's when we decided to take matters into our own hands as it had become more than obvious that the hospital where I was being treated and the locality where I live had no knowledge of either SLE, APS or how to instigate correct coagulation, or more frighteningly for me the urge to learn anything either. You may remember that I used my friend’s camper van to go to Barcelona in March of this year to see the top Rheumatologist who specialises in Lupus and APS here in Spain. He came highly recommended to me via Prof Khamashta from the London Bridge Clinic and I have to say that I was not disappointed.
After various appointments and tests with him and his team it became clear that not only my SLE but the APS were both way out of control and that I had very serious coagulation issues. His recommendation was that I start taking steroids and immunosuppressant medication immediately as a point of urgency. However, since my visit to Barcelona in March of this year (2013) I have received no medication what so ever as of course as we all know “there is nothing physically wrong with me”! He also recommended to me that I transfer to a hospital in Valencia, about 45 miles away from where I live as there is a unit especially dedicated to Autoimmune Diseases. After a long fight which involved me hiring a lawyer and wading through I don’t know how much bureaucracy and her shouting the word NEGLIGENCE as loud as she could to the judge I finally got the go ahead to have my case transferred to Valencia.
So at the very end of May I had my first visit to my new consultant in Valencia and my dear friends these are some of the things that I can now add to my list of problems:-
Mononeuritis multiplex affecting both my arms and legs
Peripheral vascular disease in the legs
Chronic haemostasis due to incorrect monitoring of my anticoagulant - I have small clots in the whole of my body, especially in my heart, lungs, kidneys and brain. My plasma level has become dangerously low as well as my level of platelets.
Unfortunately, my heart has been very badly affected, because I have not received the correct treatment for this either.
A blocked carotid artery on the left side of my neck which has probably been the cause of many of my strokes/TIAs.
Irreversible damage to parts of my brain.
I am now waiting to receive more tests so I’m sure that there will be more things to add to the list. I am now completely wheel chair bound and can no longer walk unaided. I have lost my sense of balance too. However, during this nightmare I have never lost my dignity or the will to continue living. I don’t know how but I have managed to keep my sense of humour too, which has helped tremendously
I am now waiting to receive treatment for all these new problems. My new doctor is talking about a plasma transfusion and chemotherapy (low-level) to try to remove all the infection in my body, and the use of long term steroids. I am going back to the hospital tomorrow (Tuesday) and will probably be admitted so I may be off line for a while. Hopefully when I return I will feel stronger and will have much less pain. If you have the time and energy give me a little thought tomorrow. This site has been a lifeline at times for me when no one else would listen.
Thanks for taking the time to read my blog.
Love to you all from here InSpain xxx
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InSpain
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Hi there, thank you for taking the trouble to update us again, I am personally furious on your behalf that you have been treated so atrociously - it only makes me more determined to work harder to reach more people and offer them a path to care, along with my other colleagues on here. Please keep your inspirational and positive attitude and contact us any time, let me know if I can load up any more papers or anything you need. The hospital that so messed up your care with it's medically deaf ears needs some help with 'training' but of course they have to be open to it. Mary F x
Thanks for your support Mary. I have terrible brain fog at the moment and I think I only put half of the list of problems above! However, one thing I am 100% sure of and know that I will not forget is that because I had to go to court the Judge ruled that training is not an option it is a necessity for this hospital. They have been given 6 months to improve.
Possibly, and only possibly I may have to have my left leg amputated if my new treatment plan doesn't work. In which case the judge has also ruled that I will have a case for negligence. I am not interested in financial compensation I am interested in justice and correct treatments for everyone. xxx
I just had an INR test on Friday @ 3.41. My doctors target is 2-3 even though I supplied documentation that it should be kept higher. I told the nurse it's okay to be a little higher and actually I want that. She told me she just returned from an anticoagulation seminar (in the USA) and that it's not true; higher for APS patients. I wasn't going to argue. She did say she was going to ask the doctor for a little higher /wider range to work with as I'm bouncing back and forth.
Does anyone know what this means: 56 yr old male with Antiphospholipid Syndrome "per Epic."
All I can suggest is that you supply the nurse, and more importantly the consultant she is working under with back up paperwork regarding IRN targets for APS, I am sure KateH from our charity could help you with this if you inquire. You will have to firmly, politely and consistently push, as if they do not understand, education is the key. Wishing you all the best with that. Mary F x
I'm so sad that this hospitals negligence has left you in such a state, I really am outraged on your behalf and for all going through this. Hope the new hospital will sort out correct medication and care for you.
I love that in spite of all this, your sense of humour and positive attitude keeps going, wow and big gentle hugs hon.
Having recently had a stroke myself and going through similar battles with less than brilliant medical care, I know a little of how you feel. So even bigger hugs, we'll keep fighting, thinking of you.
Thanks Sheena. I'm so sorry that you too are suffering at the hands of the "uninformed". Something to make you smile and cheer you up. Every time I was sent to see a Psychiatrist, which incidently has been more than 20 times in 6 years, the first question they ask is what is your occupation? Well I have a PhD in Psychology so each time I told them this you could see them wanting to crawl under the table with embarassment! The last laugh was on me!!!!! ha ha ha ha xxx
Aww don't cry or I will too! As I said above I can hardly remember all the things that the new hospital have said, however, my new Doctor is a mature, sensible and professional woman. This I like about her and it makes it much easier for me to trust her judgement, which is so important to me at the moment. The harm that has been done is past now and I'm going to concentrate on the here and now. I think that I will feel healthier if I do. I not saying that I'm not angry though because believe you and me I looking to draw blood!!!!!! If I recover sufficiently I shall fight and fight hard I can promise you that.
But for the moment I am going to concentrate on having my treatment and I'll have to see where that takes me. I know I do not have a good prognosis but I remain hopeful
My husband seems to think that I can take my laptop into hospital with me. If I can I will keep you all posted on my progress.
Thanks for your good wishes APsnotFab it means so much to me.
I wondered where you had gone - when I joined the site, I loved reading your posts and you were often around, so I missed you. Sending you a wave and a cuddle from me - you are a truly inspirational lady. I wish for better times ahead for you. Love, Larraine xx
Oh dear InSpain! I just read this today as I have been flat on my back (literally) for 3 weeks with new diagnosis of spondylolisthesis of spine L4-L5-S1.(crumbled) Excruciatingly painful~ but now they gave me a TENS unit(Transcutaneous Electrical Nerve Stimulation) and I am very gingerly mobile again. At least I can get to my computer. I am so very sorry you are in such pain and having to endure so very much frustration. I thank Heaven your husband is with you during this ordeal. I will send all my prayers for you to have strength, bravery and tolerance of the ignorance you encounter.
I am astonished at the care you received! I think you have a negligent suit now (under any country's law). The doctors of that hospital have done permanent damage and you still do not have the whole picture nor what is to come.
I believe you are one of the most noble, brave and compassionate people I have ever met, I would not only demand ongoing medical education in reparation, but I believe that hospital ought to be monetarily FINED - that monetary fine being directly donated to research for APS/Hughes and mandatory continuing education courses for all hospitals. I think it would set precedence for those who come behind you and for those who tried before you. You have an especially well documented case demonstrating the opinions of the people who know the most about this disease. Those educated opinions were blatantly ignored.
Something good should come out of this horrible ordeal that you have been and will be suffering. I would at least start a suit because I believe that will "get a fire under their derrieres" and know that you are serious. How much more could be revealed if
a review of all their similar cases were conducted ? Believe me, Inspain, I worked in administration and one of my duties was to be the liaison for the legal firm that handled 5 hospitals' malpractice cases. Even if the suit were dropped later, it would sure get them moving now.
I send you lots of love, my gentle friend.
I send you this U-Tube directly from Chicago (rat-ta-tat-tat) where I am close to. The song never fails to make me smile. I hope it makes you smile too!
Oh Canary I'm so sorry that you've been flat on your back. I hope you start to recover soon. Just watched the video - how did you know that I just love The Blues? Clever you! I will try and keep in touch with everyone but I know that I'm going to be quite ill for a while with all my different treatments. Thanks for your sincere good wishes they mean so much to me. The Spanish never say 'goodbye' to friends they always say 'see you later'. Hasta luego my friend xxx
I am horrified at your situation It breaks my heart that you had to go through so much for decent care. I agree that something must be done to prevent those doctors from killing people, as you yourself could have died due to their negligence.
I will keep you in my thoughts and am sending well wishes to Spain. May your recovery be swift!
After reading about your harrowing time, I am totally shocked that you have had to endure such poor treatment by so called professionals! Unbelievable!! Thank goodness you are such a strong person because I'm sure others of us, myself included, would have crumbled under the pressure you have gone through.
Hi there, I also live in Spain, near barcelona, I have also experienced the stupidity of healthcare "professionals" here, particularly in the local medical centres. Luckily there is a hospital nearby at Viladecans who are very good. I was told I had swine flu and told to take paracetamol and Ibuproaphin, 2 weeks later I was in intensive care with a pulmonary embolism....the hospital I ended up in was at pubilla cases in Hospitet in barcelona, where they were very good as they were working with london on the subject of APS.
My thoughts and prayers are with you and hope you will get your health stabilised with the progress you have made so far to get treated. It must have been incredibly stressful for you and so I send you big big hugs and lots of positive vibes for your treatment and recovery.
Best wishes and get better very soon
Sara xx
Hi in Spain,
You have probably so much love in yourself, from your husband and also from above that keep your spirit and humor intact.
Greatings In Spain! So sorry you had to go through drawn out sessions with the " I'm confused, so the patient must be crackers" doctors.
How many other professionals could get away with this kind of projection? " Sorry, but even though the brakes don't stop your car the problem must be in the sole of your shoe.". Or, " the chicken is cooked, so it must be that your teeth are not connected to your jaw."
Or how about, " I fixed the hole in your pipe, so the leak into your yard must be from an inter-dimensional rift?"
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and my dear friends these are some of the things that I can now add to my list of problems:- 
It breaks my heart that you had to go through so much for decent care. I agree that something must be done to prevent those doctors from killing people, as you yourself could have died due to their negligence. 
Update re warfarin but no clots
Not sure if numbness is from the APS or from issues with my neck
Update...
Discharged from Lupus unit !
