I am now 'very' concerned for my health and safety.

Many of you will already be aware I have been having problems with being anticoagulated and was hospitalised recently.

I am now injecting fragmin which has caused my platelets to drop of which the haematology dept are aware of. They did a anti x tena assay test last week and a nurse is calling in to day to do my bloods because they were concerned.

For a couple of days I have been so dizzy I were having trouble maneuvering around my home safely. My heart has been pounding and I had awful chest pains I wondered if I were having a heart attack.

I rang the haematology specialist nurse - who in reality has no speciality in Aps or platelets what so ever. She said " maybe you have an ear infection " you should see your doctor.

Low platelets. Symptoms include headaches, dizziness or light headedness, chest pains, and weakness. All of these things I were complaining of !!!! I have a consultant phoning me today - I shall be asking why the specialist nurses do not recognise low platelet symptoms.

This is getting beyond ridiculous. I am now frightened to to death of having to carry on using the injections. It makes me so angry when your telling these people something is very wrong and they just do not listen. The consultant who is phoning me is the very same one who diagnosed me with sticky blood many years ago - what a shame she didn't follow me up then perhaps I wouldn't have endured years of misery.

One very angry Jilly

33 Replies

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  • I would ask someone who drives to take you to the accident and emergency department or if you are still having chest pains get an ambulance, they could also check your blood while you are there

    Sorry just seen consultant is phoning you, I would still go to hospital if I were you

    Although we know mostly what is wrong with us let the Doctors tell you as they don't like people to self diagnose themselves

    Not sure if this makes sense but hope you feel better soon

  • Hi daisyd,

    I am not self diagnosing the tests have shown my platelets have dropped hence the nurse coming out today and consultant phoning later on. The specialist nurse should have recognised my symptoms.

    I am reluctant to go to my local hospital after recently spending five days as an inpatient at the hands of their incompetence.

    I have no faith in them what so ever. Jill x

  • Hi Jillmo,

    I agree with daisyd if you have those chestpain you talk of that you should go to A & E.

    Also ask for an appointment to London as Mary suggested. You will not be satisfied before you get to a Doctor who listens and knows.

    Is there a Consultant phoning you? ; at least that is something! She is a Doctor and you can tell her about your chestpain and ask her what to do about it. Try if possible to be positive when she calls you finally

    People do not understand what we have as we look quite fresh and walk etc so you can not get angry at those people. They think "all is in your head". Have you heard of that before?

    I can tell you that I have met a lot of Doctors who did not understand as they could not see any clots or PEs or DVTs etc as it was micro-emboli and they are not seen on a Scan. I did not know about this illness either and I did not want "rat poison" when the Doctors started to suggest that as I only had Aspirin.

    That is why it is a real FIGHT to get to the right Specialist-Doctor and stay with him and trust him.

    I feel so sorry for you as I understand how difficult it is.

    A big hugh from Kerstin

  • Hi Kerstin,

    Oh, I heard it is all in my head many many times. I new I had Lupus when I were in my 20s I am now 66, it has taken all those years to diagnose and still I am battling. The consultant phoning me is the one that diagnosed me with sticky blood many years ago. I also had two boarder line lupus results when she took my bloods.

    If I go to A & E I will sit for 10 hours or more to be seen by people who do not understand APs . Prof Hughes is limited to what he can do in one appointment and I havn't the health or stamina to keep travelling back and fourth to see him.

    Like yourself I didn't know about the illness I read about it on here. I put two and two together and took myself off to London Bridge where Prof Hughes confirmed I had positive Lupus Anticoagulant and Aps. Years and Years of our lives wasted on battling and when you get an answer we still have to battle.

    Take care Xx

  • Go to a different A & E with specialists who understand the condition in it! Our list of specialists is under pinned posts on the right hand side of the forum... look for those nearest you. Would I do this - yes i would. I have been known to take the train to London three counties away from me, to get help for my children years ago. MaryF

  • Jilly, as ex ambulance my advice for anyone with chest pain to call 999 and go to A & E. If you decide to wait, list by bullet point all your symptoms, health issues and whats happened over the last few weeks, so when you get the call, you dont forget anything. Try to focus on you and let the anger go, it is a wasted emition and not helping you. (I do appreciate easier said than done).

    This has gone on far too long and you really need to see an APS specialist. I know you had a bad experience in hospital so are trying to avoid going in again but you do need to see some light at the end of tunnel. xx

  • Well said!

    Kerstin

  • Hi Holly,

    As yet I have not injected the heparin because I am trying to hold off until the nurse gets here and I speak to the consultant. I would write things down if only I could remember, my head is full of cotton wool.

    Yes it has gone on far to long but I am seeing one imbecile after another. I am now at the end of my tether I am not medically trained but if people on here can grasp what is going on and can see clearly the symptoms in regard to low platelets why cant they ?

    I had the same consultant as Dave the admin. He actually understands the condition but he told me he did not want to take my Aps on !

    Is there really light at the end of this very long tunnel ? xx

  • But Jillmo they are not imbecile the do not understand this rather new and difficult illness. "He did not want to take your APS on". What did the Consultant mean with that?

    Please do at MaryF is telling you. She knows this illness and the doctors in England and she is a very wise woman. She has a great knowledge I know.

    I think you are a bit "out of yourself" at the moment. I am not sure it is the way you say in England but hopes you understand what I want to say.

    Has the nurse and the Consultant contacted you as they promised to do today?

    Kerstin

  • Hi Kerstin,

    It is not a new illness and they should be educated enough to deal with our condition or when we are in a crisis.

    The nurse had me down as urgent but didn't call until 2-30. I am now waiting for the results and the consultant to ring.

    The consultant in Bath is a rheumatologist I was seeing him for fibromyalgia. When my Aps was diagnosed he did not spot my positive blood results it was the specialist nurse who noticed I had Aps.

    I think he was a bit cross that he didn't notice the positive results and that the nurse had to point it out to him. He told me he was not prepared to take my blood condition on ! I could not understand why because the consultant I am talking about treats Dave the admin for his Aps.

    I can do nothing more than sit and wait for the phone to ring.

    Jilly Xx

  • Hi jillymo

    I cant offer any advice but just wanted to wish you the best. Sounds like you have had a very rough time recently. I hope things start to get better soon. Its infuriating when peope who are trained and paid to know about particular health problems dont seem to know much at all.

    My GP diagnosed as just a reaction to the heat what the consultant later diagnosed as livedo! And later the GP mentioned that he didnt really know about autoimmune conditions! What can you do when the health service gatekeeper is sitting at the brazier reading the paper and drinking tea (metaphorically speaking!).

    Hope the consultant today is able to sort things out for you.

    Kind regards

    R

  • charlieab,

    You have just hit the nail on the head I couldn't have put that better myself. Infuriating - it is humiliating.

    Dont talk to me about livido. I took the most horrendous photo's of myself during a crisis to get the same reaction you got. All I can say is they had better get their backsides up from around that brazier and put that cup of tea down because I am on the ruddy warpath. Xx

  • Thanks, that made me chuckle.

  • I have been saying this all along. See my post regarding "don't think your physician/ nurse knows..."

  • May I suggest you look at our list of recommended specialists and pay one privately, locally to you, who does private appointments. lots of us have had to do this.

    MaryF

  • To all who have been kind enough to message me. The consultant didn't ring me, nothing new there. My platelets have come back up so that is very good news. After speaking with the haematology nurse it has been decided I should stop the LMWH and restart the clopidogrel.

    I am back where I started but rather that than the awful dizziness and chronic chest pains. What a long day it has been I had to wait till 7pm for them to call.

    Jilly xx

  • Did they say why he didnt call/when you will speak to a consultant? Are you going back on the warfarin? Is clopyidogrel enough for you? Im very concerned that you are not being looked after by an APS specialist - can you go to see privately, like MaryF suggested?

  • The nurse that rang with the results was not the one who told me the consultant was going to ring me. When I asked why she hadn't rang me he replied he new nothing about it.

    I was on clopidogrel but still getting symptoms so was told to introduce an aspirin. I still had symptoms so another aspirin was introduced. I started to get inflammation of my stomach. Dr D'Cruz due to blood results and my symptoms wanted to put me on warfarin. I have had a bad reaction to the warfarin and as you are aware now injecting with LMWH.

    I think it was because the platelets dropped that I experienced the dizziness and awful chest pain. In hind site I should have gone to hospital but after having five awful days as an in patient I didn't want to go again. In that five days I was put on four different wards. If I am honest I was frightened to go after they stopped my medication.

    I am sure the clopidogrel is not enough to keep me stable or else I wouldn't have needed to introduce the aspirin. The nurse who I spoke to just told me to go back on the clopidogrel.

    I have rang Bath secretaries to see if I can see a specialist there but as yet they have not contacted me. I dont drive so I have to rely on hospital transport so Oxford or Bath is my best options. I have a few names of specialists but it is getting one of the Gps at my practice to referrer me.

    I dont know what to do about my medication. Maybe now my platelets have returned to normal I will not feel so awful on the LMWH. Jilly x

  • offering what I can from West Virginia --support and prayers.

  • Hello Gina,

    How nice of you to contact me.........I hope your still able to go out hiking. Thank you for your kind words I hope your keeping well. Jill x

  • What a terrible story, Jill. This could happen to any of us here. I often think of out blood balance and celllular integrity ( balance of all components) much like trying to keep a bubble afloat in the air- like when we were children- blowing bubbles on the lawn. The slightest thing and... pop. INR is off, platelets go wonky...

    you've taught us a lot... ( so sorry for you...hang in there. You've now got well wishes and prayers from Gina in the beautiful hills of West Virginia, and now from me by the banks of the sparkling clear Guadalupe River of the Texas rolling hill country. Enjoy the healing time you are having now in your body.

  • Hi, I have suggested sensible plans of action to you, which are what we would advise anybody to do! I hope they work for you. MaryF

  • I have spoken with the haematology consultant today and insisted I am referred to an Aps specialist. They are playing cat and mouse with my Dr telling me it has to be the consultant that refers me and the other way round with the consultant.

    I really dont care who refers me all I wont is one or the other to do it because I am losing patience now. x

  • Then ask them both to refer you, give them the name of the specialist you want to see. Explain you have had enough and that you will hold them responsible if anything happens to you.

  • I did exactly that this morning when I spoke to my Gp and the consultant. They have been given names of consultants who specialise in Aps and I shall keep on at them until I get a result. x

  • Hi Holly,

    I do not understand how you can decide for yourself the specific Doctor you want to see and also close to your home!

    I did not think you had so many Specialists of HS/APS in England!

    Our Health-systeme here in Sweden is quite different I now notice.

    I know a woman here in Stockholm with this illness. A couple of years ago she went to England and saw prof Hughes. She wanted the best!

    Kerstin

  • Hi Kerstin,

    There are quite a few specialists in the UK you can view specialists on pinned posts. Here in England we can request to be seen by a specialist in Aps.

    I feel it to be better for the patient if they can find a consultant near to home. Some of us are so unwell we are unable to travel long distances.

    I went to see Professor Hughes he was wonderful. How I wish every country, city and town had a Professor Hughes. Jill xx

  • Hi,

    I agree with MaryF. Sensible plans from a sensible person.

    Kerstin in Stockholm

  • All our lovely admins are sensible and give good advice it is battling with our medical staff that make it difficult.

    I have endured endless answer phones, left messages in the hope somebody would ring my back........but they never do. But I am pleased to say I managed to speak with the consultant this morning to request a referral to a specialist.

    I am pleased to say I am feeling better now my platelets have returned to normal. Xx

  • Part of our advice is helping you deal with the medical staff we have all been in your situation, some of us worse. The points I raise above, are things I have had to do, not only for myself but also for my children while at the same time taking on several institutions at once, this is why i do this work! MaryF

  • Hi Mary,

    I have found the medical staff very difficult to deal with over the years........ I have been battling for 'many years' for myself and my son. It makes things worse when you have something rare that they are not familiar with.

    I now have multiple conditions and have seen many consultants over the years. In those days medical science hadn't gone far enough to make a diagnosis so it has been a long hard battle

    Aps is another burden to my long list of ailments. I am now very unwell and sick of battling I simply havn't the strength. I was constantly up against answer phones and people not getting back to me. I am not a driver and now no longer able to use public transport so the option of going to hospitals outside of my county was not an option that I could consider.

    I am glad to say I am feeling better now that my platelets have returned to normal. I have requested to my Gp and the consultant that I be referred to be seen by a specialist in Aps. All I can do now is keep pressing the issue until it materialises. xx

  • Hi, I agree with MaryF, we have all been in your situation, especially when we we are at our most vulnerable and poorly and not knowing which way to turn.

    Glad you are feeling better, whilst you wait for your appointment firstly rest up, start making bullet point notes of what you want to discuss. I find doing this over a few days/weeks helps with the memory and hopefully then you wont forget anything. I do this all the time when things happen, then I can be precise and to the point when I see the consultant. xx

  • Hi KellyinTexas,

    What a wonderful way of putting our condition.......bubbles on the lawn. Thankfully my platelets have come back to normal so I feel better in myself.

    As you say it is a case of keeping the bubble afloat. I have spoken to the haematology consultant today and 'insisted' I get a referral to an Aps specialist. What a struggle we all have to get the correct treatment.

    You are talking of the right sort of therapy----rolling hills, lovely country side and a bit of sunshine is what is needed.

    The hills of West Virginia sound very inviting and I know Gina enjoys her walking. I am spoilt for choice the sparkling clear river of Gaudalupe sounds equally inviting. How I wish .......but I can dream. Xx

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