Sticky Blood-Hughes Syndrome Support
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My wife and APS - Looking for help

Good Evening All

My wife is 28 and was diagnosed with APS and low platelets at week 13 in her pregancy at week 19 (20wk scan) we found out our Baby Summer never had a heartbeat, my wife had to give birth etc etc

At week 13 she started on a aspirin and a 60mg of Clexine injection a day. Everything was going well until our scan.

Anyway after this she ended up with blood clots in her lungs and a platelet count of 7.... Lowest our hospital had seen, they put her on steriods to boost this and it came up for a week or so to 127 then dropped back down.

She was then put on warfarin also but they have now taken her off this as they thought she had a brain bleed turned out she didnt but her platelets were down at 10 so she got a IGG drip and a platelet transfusion.

Anyway fast forward 2 weeks and she is on dapsone (excuse my spelling) and a couple of other tablets.

The dapsone has not helped her platelets shes was at 130 last week and 67 yesterday so they are taking her in on Wednesday to put her on a Rituximab drip.

We are both scratching out heads now as the NHS where we are don't know how to treat APS (We are based in Inverness) does anyone know of a private doctor or another NHS doctor in Scotland or even the UK who could help us.

Sorry for the long winded post, hoping it makes sense, my wife asked me to type is as it would take her ages haha.

Thanks

Connor

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Hi there and welcome, sorry your wife has had such an awful time, you are not alone with that, and you have landed here in the right place for help. Firstly please note over on the right hand side of the forum under pinned posts, we have a list of recommended specialists, it is vital that she is referred to a specialists who fully understands this condition not half understands it. Also we have some specialists listed on our actual charity website: ghic.world

This will be useful for your GP not just your wife, to have somebody with the correct medical information. Most of us get full Thyroid testing, also Ferritin, folate, B12 etc and D.

Also some with Hughes Syndrome/APS also have Thromboyctopenia which can cause the low platelets.

If you have a look at the charity website, there are not just doctors listed and symptoms, but actual blogs and video blogs by Professor Graham Hughes himself and a host of every growing resources. Please feel free to ask any questions and things will improve for you and her. Also just to say sorry for your loss, these things are very hard to take, but many on here have suffered in a similar manner. Getting the right diagnosis will improve the care your wife receives and help her health. MaryF

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Thank you so much for that. In all honesty we do feel like we are alone, i feel like at this moment in time I know more than our hospital haematologist, she is lovely but everything seems to be a guess and it's not fair on my wife.

I will have a look at your link etc, I have sent an email off to the London Lupus centre also as I read some good things about them all be it I am at the opposite side of the country distance means nothing when it comes to this.

Thank you and I look forward to finding out more information and moving forward.

I will get Gemma to sign up also.

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I'm sorry for your loss. You are both going through this, the stress of doctors only half knowing can't help.

MaryF has given you good advice and I'm so glad your wife has you by her side.

Sadly we can all empathise with you both as we have all been through something similar.

Stay with us, you are now not alone. Keep fighting & learning - wishing your wife a speedy recovery.

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Thank you.

I have the list of specialists in Scotland and also joined the charity page.

I'll take this information with me to the hospital on Wednesday and see what they say.

Thank you

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Greetings from Texas. Gemma has a wonderful husband! I have a fantastic one as well.

Finding the correct Hematologist will be key.

My husband and I travel from Texas to the London Lupus centre. ( Sally and Alison are practice secretaries/ managers and are so efficient and lovely. You can’t land in better hands. London bridge hospital is directly across the street from the London bridge underground tube station- couldn’t be easier.)

I was just there two weeks ago in fact. Dr Natasha Jordan is very good and I do know she understands obstetric issues and APS very well. She was talking to me about one of her obstetric patients she had tended to just last year, in fact.

I also saw consultant Professor Hannah Cohen. ( consultant Hematologist) She does consult privately on the 5th floor of the Macmillan Cancer Center in London- only on certain days when she’s not directly with university College London Hospital. Her practice secretary is Margaret Harper. She also can give excellent council in Obgyn management with the APS. dr Natasha Jordan and Dr Cohen CC one another on all correspondence and will be available to your physicians in Scotland.

I’m past those years as I’m 49 now, but we went through many early miscarriages. ( didn’t have the diagnosis at that time) but despite many flopped attempts and an ectopic rupture- we did manage two great successes! Hang in there- you will hear many women come on with fantastic stories!

I had ITP at 18 months of age- almost died. Platelets down to 3...

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Thanks for getting back to me.

Is the treatment expensive in London just out of curiosity, I have already emailed them to assume they will get in touch tomorrow.

Glad you are mended now. After joining this it's giving us alot more positivity, just we would like to have kids that is the worry, my wife had an ectopic last year also so it's not been the best year or so for us.

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Connor, the consultant fee alone ( not a ,”treatment fee”) from the London Lupus Centre was £205.00

They are very conscientious about trying to use your existing lab work. Some tests they will want to run their own values, or do first times testings if you’ve never had. So cost will be dependent upon what they run. My first trip to London about 16 months ago labs were about $600.00. - $1,000 . ( depending on what they tested for. You may not know until the consult is finished- consultant decides as he/ she proceeds with your consult.

I got really smart this time and had everything thing ordered Texas in the week or two before my departure, including all the vitamins, ferritin levels, thyroid panels, etc, where my ins here covered it at 100% because I ad already met my yearly deductible.

Now, my hematology consultation with Professor COHEN was a bit more specialized with regards to lab work.she did re order the APS panel, along with lots of other things that she honestly mumbled so quickly it went over my head. ( it was about an alternative way to check for a specific titre ... it was a side note mumble- so not important.) You just put the trust in Hannah Cohen. That’s it!

It was more expensive bill- but the lab work was much more important for this particular trip for me. ( I keep clotting so my Texas docs sent me to Professor Cohen. ) I don’t see the bill in my paper work stack- but I’m thinking the lab work was about £800 .

Yes- London Bridge for the overview and life long management of this disease- but it’s Hannah Cohen you’re really after specifically for the pregnancy. And FAST.

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Thanks for that information.

All her bloods are up to day as we get them done weekly just now as the medication she is on is not keeping her platelets up.

Thats the only issue just now her platelets keep dropping.

Everything else is OK as such....

Well tomorrow the harder work starts as I am going to start contacting people ect and hopefully here back from people also.

We have a few NHS specialists within around 3hr driving distance who I am also going to reach out to but we have a meeting Wednesday with our haematologist so I am going to take in a load of information and contacts and see what they say.

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I would think Hannah Cohen would be the one for consult Hematologist if you don’t have success with closer Hematologist from pinned post suggestions on the site. The advantage would be in OBGYN world for later once your Gemma is healthy again and ready to move forward.

Sounds like you are getting plans solidified.

Being from Texas- I’m still figuring out how the U.K. works so I think APsnotFab , and Hollyheski and MaryF ( admin) will be the best to guide you on the details of your national system’s inner workings.

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Thanks Kelly.

Well 2 days ago we were lost with what was going on. The hospital ust don't really understand it or at least they are giving us that impression.

Since discovering this page and posting up we have a wealth of information, we both spent hours looking through it and it's giving my wife a hell of alot more hope in regards to pregnancy etc which is nice.

Things will hopefully start heading in the right direction for her as I say it's been a really tough year for her.

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It’s a lot to learn very quickly and under the very worst of circumstances, isn’t it?

You’ll look back one day and think... “wow... we sure are tough! We got through that, Gemma! We can do anything, you and me!”

You will have a rich, complex and very meaningful and varied depth to the tapestry of your lives, you and Gemma. I can tell that you already do. I’m proud of you two. Make some tea and snuggle up and rest! You guys must really be tired.

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Hi Connor and welcome to the site,

I am sorry to hear you and your wife are going through such a wretched time but you have now landed in the right place for sound advice.

Out of desperation I took myself off to London Bridge. I am pleased to say after years of desperation to find answer's I finally got them.........it was worth every mile I had to travel and every penny I paid.

They are the experts in Hughes Syndrome ( antiphospholipid ) what's more Professor Hughes supports this site ! ( He being the founder of Hughes )

We are a friendly bunch and you will find the administrators will give lots of information that will point you and your wife in the right direction.

I am sorry to her you are both going through such a traumatic time at present but with the correct treatment for your wife I hope things will improve for you both.

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Hi Connor & Gemma, I'm so glad u found us. Firstly I must say how sorry I am for ur loss, I understand how devistating it is to loose a child in this way as my son & daughter-in-law experienced the same in July 2011. Even though it was almost seven years ago since she was born sleeping, we all think of baby Lily-Anne often.

They went on to have two early miscarriages (much easier to cope with yet still devistating). I'm happy to say that on 16 May baby Marnie was born. We are all extatic to have a happy, healthy baby in the family.

I wanted to share our story because even though it is hellish at the time, I'm sure you will be blessed with a healthy child once you are stabilised.

I know it is not easy, but the best thing to do is research APS / Hughes Syndrome for yourself. There are many excellent books out there, one being - Sticky Blood Explained... by Kay Thakery.

The other important thing is to fully prepare for your consultants appointment. As you only will have a short amount of time, then u need to get the best out of it: here is some of the things I do:

1. Print out your details name, address, post code, date of birth, phone numbers, e-mail.

2. List of ALL the mediical professionals who are looking after you with their name, address, post code, telephone numbers, e-mail if you can find it out.

3. List all your medication including those you have now stopped taking (with the date)

4. A diary of events. They will have limited access to information so what you give them is important. Don't go into too much detail - they will question you or ur doctors if they need more info.

5. A body map. Print/draw the outline of a body and use arrows to indicate every symptom you have. Sit down quietly and think about everything. Remember there are lots of symptoms that affect the mind too: depression, disturbed sleep, confusion, brain fog etc.

Leave it out and keep adding to the body map as it's difficult to think of everything at once.

6. A list of questions: think about the things you want to get out of your appointment and make about 6 questions. Leave room for whoever accompanies you to jot down answers during your appointment.

7. Arrange for a full range of bloods to be tested as someone else mentioned often we have issues with thyroid (NHS won't do the full thyroid range), B12, D, folate, ferritin... print of your results. Most of us arrange these privately annually I think it's via Medicheck (please ask the others to confirm)

8. Ask your GP to test your bloods if he/she will FBC, LFC, KFT, ANA, CRP, and any others they think helpful ask for a copy of results. A full autoimmune screen would be fantastic!

9. Copy all hospital discharge letters you have.

10. Keep a diary list, for easy reference, of ALL medical appointments each year (that makes it easier for them to look them up if they need more info)

Mine is a table with headings:

Number. Date. Person. Clinic. Reason. Hospital. Notes.

11. Make up an A4 folder with all of the above in it also include an index page and number the pages and then put a copy of everything in an envelope or plastic wallet to hand to the specialist (bit by bit) as you go through the consultation and they ask questions.

In my folder, I also add info just for myself e.g. print off posts from here, Prof Hughes Blogs, notes from books I've read or sites I've looked at (don't forget to always add where you got the info, in case you want to go back to it)

My folder contains lots of sections now, e.g. One for my: Rheumatologist, Haematologist, hospital discharge notes, blood test reports etc

I always ask for a copy of the letters from specialists to my GP and add them too.

It sounds like a lot of work but it's good to be pro-active and to prepare, it helps those looking after you and certainly helps to make the most of appointments. My consultants are now used to my purple folder and often ask me things like 'it's easier if u gave a copy of ... in ur folder, can I see it - it saves time me searching your notes on the computer!'

The alternative is to arrive at your appointment, without the info to hand and fumble through, wasting time and getting no where.

I wish you lots of luck and please do PM me if either of you want more help or a chat. I hope all this is helpful to you. I look forward to hearing from you soon love Wendy 💋

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Why not print off my post above so u can refer to it in the future 💋

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03450 600 600 is the phone number for Medichecks - blood tests. I would call them and see if they come to Inverness to take blood samples.

They have a website too just google.

They have frequent offers so most of us wait for them.

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wow thank you so much for the information, its's nice to know we are not alone.

I have made a rough diary of events but will go through it and add more detail.

My wife is making up a medication list then I will put it all onto the laptop (I'm back to work tomorrow but will have some time in the office to do this)

Thank you all for the information it's brilliant that there is a place I can come and ask questions etc.

Also to add before my wife got pregnant she had a under active thryroid which they were treating with thyroxin (excuse my spelling)

I feel I have done so much reading that I am now a specialist haha (joking) it's quite strange how quick you can take in information on blogs ect when you want to. I'm an engineer and fire fighter so reading about medications etc is way above me but we seem to be getting there.

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Also to add to this. My wife has set up a instagram page - antiphosfolipic_ttc if anyone would like to join, it's her coping mechanism for her to post up pictures as she is learning about APS.

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Just an update on this, The London Lupus Centre has been in touch. Professor Hughes has had a look at my wifes case file, I did as you suggested, made up a timeline, all medication and doses, when everything happened etc took a couple of hours. Sent this over and he has suggested 2 specialists in his practice for us to get in touch with. We have decided that we will wait and see how my wife gets on with her 4 course in 4 weeks of the Ritiximub. If that fails us we will be booking in and seeing what they can do with us.

I also spoke to a couple of the NHS specialists on the APS-Support website who have looked up my wifes NHS file and said that we are going in the right direction.

Fingers crossed on Wednesday my wife gets on very well but we will see what happens.

Again I can't thank you all enough for the help in getting my understanding alot better on the situation.

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