Have you been discharged from Tommies... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Have you been discharged from Tommies/Guys in last 18 months

AnnieAxVale profile image

Curious how many patients have been discharged and had all aps related meds taken away since pandemic started..even stating in some cases they never had aps to start with..

Thanks

18 Replies

Hiya, yes I have been fighting this for the past couple of years at an NHS London hospital. I was told to never come off blood thinners and now I’ve been told I don’t have APS and blood thinners have been stopped.

MaryF profile image
MaryFAdministrator

Not happened to me, I go in and out of positive and negative results, however have heard about it happening to other people. MaryF

HollyHeski profile image
HollyHeskiAdministrator

Not happened to me but they are stretching the appointments out. They always make it clear though, that they are there if I have a problem.

If I need anything non urgent email usually works well too.

I've had a lot of difficulties getting an appointment -even resorting to a GP request to be seen. Ringing didn't help, actually going to the dept didn't help , eventually another phone call got a lady who eventually made an appt only to have the date changed later and it's now a telephone 'consultation'. I had no difficulty getting blood tests done at St Thomas - very straightforward.

The concern is who else understands the condition enough that we can get advice and understanding of APS from. Certainly not our GP.

I am fighting to stay on the list and my medication, despite being triple positive. If being an adminstrator on this site would help me with appointments and medical help I am very happy to volunteer my time.

KellyInTexas profile image
KellyInTexasAdministrator in reply to MLNC

We do not get any special favors by any medical institutions by being volunteers on this site.

I personally do it to pay it forward. I was in a terrible place with my health. Finally after multiple surgeries and truly failing health I tested twice positive for the antibodies 11 weeks apart and then the next week for a very large DVT. ( November 2016.)

While in the hospital in Texas for 10 days on bolus heparin drip and starting warfarin for first time, my antibodies were tested again. Negative!

Inexperienced hematologist said- in 3-6 months we will take you off warfarin- you do not have APS.

My internist and rheumatologist and neurologist ( I have developed seizures in 2012) all know this was not right. ) My GP took over my Warfarin.

They all knew if Prof. Hughes- my daughter joined me up on this site, and I made an appointment at the London bridge lupus center.

I literally private messages the admins late and night and said- “ Im in London- arrived last night. My appointment is in a couple of days. Will keep you posted. “

APSnotFab was incredibly helpful in this process.

During her time as an admin on this site, she helped me and others tremendously!

Lure2 helped teach me about warfarin- how to keep it steady and manage greens in diet and chart it all to keep daily records.

MaryF contunually provides links to peer reviewed peblished papers. A huge personal contribution to me was her suggestion that my need for larger than usual need for warfarin was Vkorc1 gene mutation. I asked a hematologist to run it, and yes! I had one copy. She’s a guru with vitamins / minerals/ values for APS patients. ( see under pinned posts.)

HollyHeski has helped me understand arm clots and reasons behind them. She’s spent so much time sending me very lengthy documents on potential ways to figure out ways to help get to the bottom of my continuing clotting in arm. Ways to relieve pain . Also- different methods of anticoagulations- which I’ve then gone on just two weeks ago to share with someone else with APS who has the vkorc1 gene mutation in Ft worth Texas. I see other work she does on here ( personal and deeply painful) that helps grieving women beyond measure. Beyond what brief doctor consults can usually provide.

lupus-support1 provides unconditional humanitarianism and critical thinking skills in times of of an emotionally upheavaled soul and autoimmune attacked body. Now that’s a profession skill set I can do personally get behind.

The greater contribution of all is the combined contributions of all members of exactly the kinds of things I’ve mentioned above. I’ve personally printed off many a paper from various contributions members over these last 5 years.

I do this work to pay to forward- and to continue to learn from others here.

Each of us will have our own reasons, but they will be similar at the core of it.

I could not let this comment pass without addressing it because it does not recognize the intent of of the heart and spirit of charity / volunteer work.

If we can help you in any way get what you need re medicines or appointments, this we can try our very best to help you think through.

Being from Texas, I will not the the best one…

baba profile image
baba in reply to KellyInTexas

Don’t forget the tremendous contributions from KellyinTexas!!

KellyInTexas profile image
KellyInTexasAdministrator in reply to baba

We do try- it’s all any of us can do. I just so appreciate everyone’s support here.

Lure2 profile image
Lure2 in reply to KellyInTexas

I agree with you Kelly about APSnotFab. I miss her a lot on here and her great knowledge of not only APS but also other Autoimmun illnesses.We learned a lot from her.

Thank you for your work on our site!

MLNC profile image
MLNC in reply to KellyInTexas

This is exactly why I am reluctant to interact with this site. I made a note of the fact that the only two people who responded positively to staying on the list were admins. I in no way attacked either of them. I try not to post medical information because it I have noticed it is searched, collated and then repeated by others; but today I will.

I am struggling to stay on the list and my medication. Without which I know I will have to give up my job, because I cannot function at the level I need to without it. I had telephone appointment yesterday with Rheumatology and no one called, despite me blocking time out my own patient list to await the hospital. I had a neurology appointment before Christmas and the wrong letter was sent, advising me it was telephone appointment when I was meant to attend in person. As a result, I was a DNA and I was immediately removed from the list. Despite the fact I have never missed an appointment and everyone who has had a PET scan showing hypo-perfusion of the Temporal lobes, has me to thank for this evolution in the understanding of how this disease can impact the brain.

I went to St Thomas with an upper limb DVT before Christmas which was confirmed by a Consultant via ultra-sound at 11pm and at approximately 10am the next morning this diagnosis was dismissed as a lipoma or infected cyst. If either of these DD was correct something would be in evidence today, and surprisingly and nothing is. Further neither would have been impacted by the high dose of LMWH I was prescribed immediately after the ultra-sound that night. I had to report to the hospital the next day and during my assessment the A&E department contacted the APS department at Guys which said I had probably just bumped my arm and not noticed (without examining me). I am a medical professional myself, and have never bothered A&E regarding my APS apart from pregnancy loss, when a post op infection led to uncontrolled bleeding. I have always managed myself and discussed my concerns at my Rhuematology appointments, so I felt it was more than a little demeaning to dismiss me in this manner.

I live in the London, I am on the list at Guys and St Thomas's, I have been on the list for over a decade and I am accutely aware of how things have changed. I have been told my case will go before multi-disciplinary review committee, a decision would be made in my absence and I would be informed post-fact.

Being taken from the list will forever change my life and if I draw attention to the fact people who have a higher profile within this community remain, even though they are on no medicaiton other than low dose aspirin, while others like myself who are on LMWH, low dose aspirin and hydroxychloroquine, are at serious risk of being removed from the list; I make no apology for it. To my mind this is a question for the hospital to answer and is not an attack on the adminstrators. I note you did not attend St Thomas/Guys, which is an NHS Trust, but rather London Bridge and by virtue of this and where you reside, have no lived understanding of what I am experiencing. But I am truly glad you were given such wonderful support when you needed it.

I work within the NHS and am accutely aware of the pressures prior to and post covid. I am patient facing and have been wearing the same level PPE complete with respirator as they wear in the COVID wards. I put myself on the line everyweek seeing patients without the benefit of screening PCRs or LFTs. All I am asking is for my medical condition to be treated, for my care to be supervised and for me to get the medication I know I need. I am just asking for support for myself and others who have been told they are at risk of discharge.

HollyHeski profile image
HollyHeskiAdministrator in reply to MLNC

Hi, I am really sorry you are going thru this and in no way took your reply as an attack on us.Your knowledge of APS, as well as being able to go through the complaint service at the hospital will be invaluable to others that are going through this.

I would be devastated if they dropped me, living outside London and not having a regular GP since covid would leave me very vulnerable so I do emphasise with you and the others.

Thank you and please let us know how you get on?

MaryF profile image
MaryFAdministrator in reply to MLNC

I am really sorry you are having such an awful time trying to sort everything out. I hope you win your case. MaryF

Ally7 profile image
Ally7 in reply to MLNC

I was diagnosed as low positive 14 years ago by a Dr from the lupus centre at Tommies and have been treated with warfarin and was changed to fondaparinux 2 years ago by haematology at Tommies.

Had tias, 3 early miscarriages, fibromyalgia type pain and fatigue brain fog, absences. speech problems. Migraines, vertigo, tinnitus the list goes on. Ms type symptoms

I have never had a clotting event which has been proven but had an unstable inr when on warfarin.

When it was low I would know every time before the blood results, one on bad period of time I had tia symptoms, was hospitalised and later found the level had been accidentally at 1 for about 3 weeks over this time. I only discovered this after I looked in my own notes which were at the bottom of the hospital bed. I told the dr who then prescribed me heparin. The tia symptoms reduced. I explained this to the consultant in London and She said it was coincidence.

They have now stopped anticoagulants and have said I don’t have APS. My bloods are now negative. I had low positives originally 12 weeks apart and La pos in 2018 .

The doctor at Tommies who diagnosed me with APS back in 2006, has now said I don’t have it. He has even changed his mind since he emailed me back in 2020. At that time confirming I did have it but could come off blood thinners. He said I needed to eat healthily, exercise and generally it was self care.

I have been taken off the blood thinner and am trying to be positive that I don’t need it but weeks after my legs are giving way again, tremor, exhaustion worse, walking upstairs is exhausting and causing me to be very breathless for about 10 mins. The fatigue is all consuming, apparently I’m constantly asking the same questions so brain fog much worse. Everything it helped is reverting to how I was prior to diagnosis.

I’ve been discharged from prof H at tommies.

Is anyone else going through a similar time?

I wondered if you have been taken off anticoagulants because you don’t have a proven clot or have been told you don’t actually have aps after being told you had and been treated fairly successfully for it, maybe we could see how many have been affected and get a group together to inform the specialists of the effects this new criteria is actually having on quality of life?

I’m having difficulty with processing what is said in posts tosay but I think it’s similar problem to me? Sorry if I’m wrong.

I’m sorry they have passed it off as a bump. I too am a retired nurse and never bothered the hospitals unless miscarrying or tias etc. I feel exhausted with it all.

Hugs.

Covid has been horrendous for everyone! For us APSers there have been additional burdens, but also light at the end of our diagnosis/ treatment tunnel. The health care systems are so overwhelmed that many of us with APS, or other chronic diseases are (understandably) not prioritized for receiving health care. --to the point where our fluctuating blood numbers are used as a reason to dismiss us. On the other hand, as we have read on this site, research into the symptom overlap between APS and covid has pointed to common immune pathway errors. These revelations will hopefully lead to more functional treatments or even a cure!

Till then, stay strong. Continue to keep records and advocate for yourself! And we will continue to offer support to each other on this site!

No problem here, I was seen 4 months ago at st Thomas' and have a telephone appointment next week. It was supposed to be an on site appointment but was changed to telephone a week ago. I was a bit surprised as my meds come from their pharmacy so expected to pick them up after my consult but as long as they courier them to me that'll be fine. They've been happy to courier them in the past so fingers crossed.

Thank you for your input.. i really was only looking for straight answers to my question so i can begin to corolate the amount of people its happening to...

KellyInTexas profile image
KellyInTexasAdministrator

I AnnieAxVale I hear you. Thank you for that.

Sadly it’s been happening to a lot of people for a while. I’ve seen it as a recurring theme on here.

It’s honestly heartbreaking.

I don’t understand it- but I think that’s because I’m not from your country. I’ve heard it said on there, “ That’ll be the NHS wanting to save money.”

I think to myself….”How much money will a clot, or God forbid a stroke cost?”

Is that really the best way to economize?

Having given this some thought, what do you think about making a new post, and giving it a title along these lines?

“Anyone one here been dismissed from their NHS APS specialist had luck reestablishing themselves with their NHS specialty APS provider, and if so, what procedures were used, and by whom to achieve this successful outcome?”

I was discharged at the start of the pandemic, just received a letter in the post not even a phone call to discuss. Luckily my GP has kept me on my meds otherwise not certain how I would cope.

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