How nice to be back amongst friends

How nice to be back amongst friends

Thank you all for your good wishes and concern it is so very kind of you all.

My local hospital here in Swindon was an absolute nightmare with little or no knowledge of Aps. It is truly exhausting battling against Drs and consultant that are not willing to educate them selves with our condition.

I am unable to see a haematologist until the 27th of Sept, I have no faith in any of them at my local hospital and will do my best to educate them in regard to our condition. I would have admired them more if they had said they had little or no knowledge of Aps but they were willing to learn about it.

To leave me without medication when my INR was so low tells you all of the imbeciles I were battling against. I am sure many of you have had to do in the past. I suppose in a way I have won the war (for now) but fear for others and wish to educate my haematology department so no one else goes though the misery that I went through.

God bless you all and keep you safe. Xx

I have complained to the hospital manager of the space given at the side of the bed. There was no way I was able to use the locker or chair at the side of my bed. Every time the nurses came onto the ward the door bashed against the table in front of the chair. It was like an obstacle course to get to the toilet especially at night. I felt I was being punished for speaking my mind. :-( The GWH needs to get it's act together ASAP.

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28 Replies

  • To have to fight when you are feeling so low is just appalling. Are you home now or still fighting the good fight in Hospital? Hope you get to feel better soon.

  • APsnotFab maybe can provide you a link for a written paper providing education from a reputable source on treating Hughes disease that you can share with the powers that be. Then you can make copies and have them to hand out to educate them on what they need to know. Good intentions, Cindy in NJ

  • may have needed information: tap on "self help" button when you get there! I just remembered.

  • I've been in the hospital ( late May 2017) in the exact shoes with a DVT. Infuriating, isn't it? They wanted to lower my Coumadin amount! I was admitted with an INR of 1.9!!!!!!!!

    Migraines and vomiting and clotting. Bridging was going well-

    Started steroid IV- check.

    Considered IVIG infusions- check

    Changed doctors- ( hospitalists rotate.) that's when things went wrong.

    So sorry- and a speedy recovery.

  • Glad your home & on heperin.

    Is your heamatologist on the 27th a specialist of APS? You need to see a specialist urgently.

    I was unable to take warfrin and there are alternatives, rest up, speak later xxx Big hug.

  • Hi and thanks for the message!

    As Holy says you need a Specialist urgently.


  • What a shocking story which is not unfamiliar in LUpus as well!

    Wishing you better health and doctors who will listen.


  • Oh no

    I am really sorry you didn't get sorted. It's hard to constantly battle when you are feeling so low.

    Hope you get it sorted xxx

  • You have all been wonderful with your good wishes but as you can imagine I am still tying to sort things out.

    My first port of call was a complaint, then to sort my meds out. I shall answer you all when able. It was really awful and still in shock and disbelief so need to get myself together. It was not only the lack of care the conditions in the last ward they put me in were appalling.

    I will be in touch soon. Xxxxx

  • Oh Jilly how awful for you. I hope you start to recover soon. xxx

  • I have just received my INR results in the post. They have discharged me with an INR of 1.0. :-(

  • Jilly an INR of 1.0 is normal for people who use only Heparin. You do not need to be tested if you are only using Heparin. Heparin works differently in the body but you still are protected just as if you were using an oral anticoagulant. You only need to have your INR tested once you start the bridging process if you have to go back onto an oral anticoagulant. xxx

  • That is strange because this week I am only on the heparin but the NRI nurse is coming tomorrow ! You have put my mind at rest I was panicking over that reading. :-) Xx

  • Well you can see if your INR nurse knows her stuff! :D There is no INR with Heparin!

  • I shall look forward to that. The poor nurse is being sent out when she could be attending someone else. This mistake will show how incompetent they are when it's added to my complaint. Xx

  • This is such a shocking account. To discharge you with an INR of 1 is, to my mind, sheer negligence. I am utterly appalled that a haematologist doesn't seem to have been brought into the frame as regards your care - it doesn't matter if the doctors you saw hadn't heard of APS, they should have followed it up with the appropriate professional who could have advised them.

    It certainly makes me appreciate the awareness of APS in the main hospital I have had to use here - and the willingness of the medics to be guided by me and double check, as they thought necessary, with a consultant haematologist.

    I wonder how there is such varying awareness of our condition?? It truly boggles the mind. And as for your bed/personal 'space', I'm at at loss for words...

    But, onward and upward - my good wishes to you.

  • Although my INR is only 1.O one of the admins has told me this is normal when on LMWH, you only get an INR reading when on warfarin. We learn something new each day.

    I must admit bed space was limited. x

  • Sorry, didn't see any reference to LMWH in your message so thought you had been discharged, on warfarin, with an INR of 1! Glad to hear that you are, presumably, adequately anticoagulated.

  • I am just following what other's are telling me when on LMWH. I still have my L plates on when it comes to INR testing. Jill x

  • I too was in hospital in May, I'd been on steroids for a chest infection and my inr went up to 8. My inr nurse knows what APS can do and she always says not to miss a dose just have a lower dose than normal otherwise I just crash down. Due to family circumstances, around this time my husbands carers were running late and so I hoisted him up and into bathroom and washed him etc. After this I had terrible tummy pains but put it down to trapped wind! However 6 days of pains later I started to go black from my chest to my thighs and was rushed into hospital to discover I was bleeding out and had been since pains began. So the hospital stopped my warfarin and without telling me gave me vitamin k. I pleaded with them to let me take warfarin or at least inject but they just said they were going to listen to the haematologist rather than me. I was in despair at thought of having a tia as I usually do if inr drops below 3.2. I also have a metal mitral valve in heart and have to have higher inr to get blood over the valve. I was so thankful the next morning when a consultant came in and when I told him about APS and warfarin he turned to junior doctor and barked out to get an injection NOW!! They tried to tell him why thinners had been stopped but he just said "I'm sure she knows her body and more about this disease than all of us put together. " my inr had dropped from 8 to 1.9 overnight. So after 7 and half hours of blood transfusions I was eventually sent home for the community inr nurse to bring me back up to level, which this week I have stabilised finally at 4.2. It's only taken 3 months!!

  • OMG you poor lady. I think that consultant might have saved your life. The vitamin K lowered your INR of which they thought was a good way to stop the bleed. I suppose they had to stop the bleed some how but this incident clearly shows the lack of knowledge of our condition. The trouble I found when I were in hospital was the fact you saw so many different Drs all with conflicting views of how to treat us.

    It is story's like ours that need documenting so others are made aware. You must have suffered a really bad bleed to need 7 and a half hours of blood. As you so rightly say the stent to the heart does not help with your condition. You are going to leave the lifting to your husbands carers in future. I am amazed at how long it has taken to bring your INR back in range "it has also made me aware that this sort of thing can happen". I do hope you are on the mend now.

    You take care. Xx

  • Ageingfemale,

    How horrible!. Good that that Doctor came in and shouted to the others. We are often in a danger when we get in hospital I have noticed. That I am very worried about.


  • Hospitalization is a scary place for us😥

  • Hi, found this article on low sodium with warfarin, cant find any relation to heparin/sodium. Really important you see a APS specialist, as this cant go on for you,

  • I have come across two cases of low sodium one being a friend the other a dear old lady who I met in hospital.

    Way back in my teens I remember swelling up with fluid being a youngster it didn't enter my head it was due to salt. I had a major operation at St Thomas where I was put on a saline drip I my abdomen started to swell so much It burst some of the stitches. Dr's came rushing to the scene and ordered the drip to be removed.

    Once off the drip the fluid started to move. I was heaved on and off of bed pans for what seemed like an eternity which was excruciatingly painful after surgery.

    I just had a look at your link how interesting seem's it is well documented warfarin can cause water retention ! Thanks for sending. x

  • When is a Salt not Sodium!

    ***Warning! Some technical articles below! *** 😳

    You must not get confused with sodium and Pharmaceutical salts!

    The Top 15 Most Common Drug Salts*

    Hydrochloride (15.5%)

    Sodium (9%)

    Sulfate (4%)

    Acetate (2.5%)

    Phosphate/diphosphate (1.9%)

    Chloride (1.8%)

    Potassium (1.6%)

    Maleate (1.4%)

    You will see from this article how warfarin is made up:

    And this explains why its used:

    This common language article explains why these salts are added and that they can change the way that a medicine works.

    This is an excellent paper explaining what the different salts are and in what different ways it can affect the main drugs effectiveness, especially if combined with other prescription drugs. An interesting case study towards the bottom is on Clopidogrel, which highlights that it comes in 3 different salt formulations, not necessarily giving the same results and shows examples well.

    And this more technical article too

    The bottom line is that the drug "salt" used in warfarin is sodium and there is no alternative. It would be interesting for you to look at what salts are being used in all the medications you take and see if anymore of them are a sodium salt. If they are then either it is not the pharmaceutical salt in the warfarin that is affecting you, or it could be the combined effect with other medications if you have a sensitivity.

  • On the subject of hospitals, my father was rushed into hospital last weekend. He was in A&E for a few hours and then moved to a ward. From the time he got to the hospital, through the night and the whole of the following day, he was still in the clothes he arrived in. When he got to the ward they just put a blanket over him! He had drips attached and was unable to undress himself as he is 88, you would have thought that someone would have helped him into a gown if nothing else.

    I live 3 hours away and when I tried to call the surgical assessment ward where he was taken, they just had a voice message. That was on for 4 hours and I ended up getting the switchboard to put me through to another phone. When the nurse answered that one she said "Oh I can see the phone from here", (no thought of getting up and answering it obviously), then she said she would take my number and get the nurse looking after him to call me back..... nothing! Finally I called another ward who gave me another humber and when I called that a sister answered. How the hell they think a relative is supposed to get information I don't know.

    I am scared to death of having to go to Hospital at the moment, they are in a dire state due mainly to under staffing.

  • Aw Lynn that is terrible care for a dear man of his age, what a worry for you when you live so far away. It is a disgrace they have left him in his original clothing, this sort of thing makes my blood boil when it concerns our elderly.

    All the time I were in hospital I spent my time giving elderly patients their food and drinks because the poor souls couldn't do it for them selves. They waited ages for bedpans and commodes to be brought.

    I asked the receptionist to cancel my doctors appointment you would have thought I had asked her to fly to the moon. She had a face like a slapped backside. I used to be a carer for the elderly in my younger years so have a lot of time and patients in regard to their care.

    You must have been so worried about him but If I know you a complaint will be on the way and rightly so. To think we have paid into this system and this is how we get treated when in need of medical care sickens me.

    Jill x

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