They stopped my dads warfarin afterr his INR soared from 3.0 to over 10.0 in two days. Now they want to stop his Clexane for biopsies!?

But he has DVT, he cannot walk and is in severe pain when his legs are not elevated. He also has PE in both lungs. Excuse my capital letters and please forgive me my anger, but I TOLD THEM I SUSPECTED DVT IN NOVEMBER AND THEY IGNORED US TILL HE GOT EVEN MORE SICK AND WAS ADMITTED TO HOSPITAL WHERE PE WAS CONFIRMED. He only got taken seriously end of dec. Sorry. It's just I don't know how much more me and my family can take, let alone my poor dad. I've only just recovered from brain surgery after my neuro refused to see me and I ended up having to have brain surgery after a massive seizure triggered by bleeding. Why don't they listen? I refuse to take it easy, i refuse to stay unjustifiably calm, i refuse to be placated by insubstantial evidence and explanations, I refuse to watch him suffer and do nothing, i refuse to stand by and remain uneducated. I will not leave his side, i will not stop pushing for his best interests, i will not Cease, i will not stop asking questions. I've called everyone I can. I'm organising special transport to hospital. I've called the anticoagulation clinic and confirmed with them that he should remain on the Clexane and established how he can do this safely. The biopsies are for checking his Liver lesions. I have researched so I know they are looking for cancer because cancer can produce chemicals that cause blood clotting. I have called his consultant's secretary and chased him up. I have even spoken to the doctor himself (he confirmed i was correct about the biopsy reasoning). I have called the GP and I sorted a home visit and tried to get his pain managed. But it doesn't half take some pushing, does it? I've learnt how to inject so I can help my dad with his jabs. But what am I supposed to do? They keep saying things like "we don't need to check his other leg for DVT because it'll just be the same treatment anyway. And because his INR was over 10 he can't have the warafarin again until we establish the underlying cause." and "he's on the best possible treatment available." yet nobody seems capable of explaining anything else or answering any of my questions like.. Why can't they monitor him whilst he is on clexane? He's been discharged from the clinic and told to come for a check up in two weeks??.? I know they 'don't test INR or monitor people on Clexane' but meanwhile he is deteriorating. And getting new leg pains. surely they should be checking his INR? And i know there are tests available for checking people on clexane, its just they only do it with high risk patients. How is my dad not high risk? If I'm wrong I will happily be corrected.. But for goodness sake, why can't they explain? I can't bear to see him suffer. I wish I'd trained to be a doctor. Sorry for the rant. I just don't know where to go, what to do or how to help him. I've called every support line I can find, have emailed specialists and I haven't left his side. But I'm tired and scared and I don't want him to die. And if he does, i want him to be pain free and well cared for.

10 Replies

  • Hi Amoobaa. Don't worry about ranting! It may not do a lot of good but you need to get it out and not bottle up your own strong and justified feelings. I am not sure where you are located but firstly I would strongly suggest that you find your nearest AntiCoagulation Europe representative so that you have someone who will understand how you feel to just chat to.

    If you don't know where they are respond to this with a nearby postcode and I will let you know the nearest.

    If your dad's INR shot from 3 to 10 so quickly then that is a serious problem and it is probably wise for him not to be on warfarin again until they know why. Clexane will do exactly the same as Warfarin in helping to prevent further blood clots but works a different way and doesn't need an INR measurement. It works for only 12 hours though which is why he probably needs 2 shots a day but they can safely do biopsies without worrying about him bleeding only around 12 hours after his last clexane shot so this makes sense.

    It can be very frustrating getting answers from the medics who don't always seem to agree and don't always all have the facts of the case. Your dad's consultant is the one in overall control and he should be the one with ALL the facts so persevere in trying to contact him and his office. Your GP should support you in this too but they are very busy and can take time.

    I am not surprised that you feel tired and scared in the circumstances. Isn't there someone else in the family who can help? Social Services or a practice nurse from your local GP may also be able to offer short term carer help while dad is at home especially if he needs clexane injections. You could use some practical support as well as someone to talk to.

    Not every son or daughter cares as much as you obviously do so hang in there and keep ranting! just try to get some support. Please keep us posted, we care too.

  • Thank you so much for your reply, you are very kind and it's amazing how much words of support can help. We are based in Surrey.. Post code of our area is KT121HH. I'd love to hear about someone I can phone/ the representatives you mentioned.

    My Dad has always been there for me and has always fostered and supported my creativity and my ambitions.. The least I can do is return his love and support, after all, my parents are the ones who made me who I am- the ones who gave me the tools I am now using to help them. My dad is only 57.

    The are veins popping up on his right leg now.. It's a bit worrying that it's getting worse and yet we just have to sit and wait.. I'll try calling the doctors again soon. Thanks again for all your support, I will definitely stay on here and keep you up to date with our progress. I hope you are well? I read some of your posts earlier, I hope you are having a good day.

  • Hi Amoobaa and thanks for the fast response. The nearest ACE representative to you is Brian Townsend who lives in Surrey and is on 01737553281. He may be at work in the daytime and not always available. I don't mind you calling me also. I am Peter and you can get me on 07919487456 any time.

    I am fine thanks; thank you for asking. I guess we all have our trials at times but it is so much better knowing that help and advice is at hand. Think how your dad would be if he didn't have support like yours. Well done.

  • Thank you so much, I'm sure we'll be in touch soon! It would be great to have someone to speak to about all this.. It never rains, but it pours! (unless it snows, like it's been doing this morning, where I am!) thanks again, I'm off to make dad lunch, speak soon!

  • How are you doing Amoobaa? I talked to Brian and he is keen to chat and waiting for your call. Hope things are improving. Peter

  • Hi Peter, things are relatively ok.. Dad's in a lot of pain and they can't fit his biopsy in this week. His work have offered to pay so I don't know if that might help.. I dont really think its fair that some people can go privately and thus get treatment faster.. But if his work pay and it helps then im all for it. We will hopefully have more clarification tomorrow (Wednesday). My brother is strong and helped him to get up the stairs today. But I think it's the first time my brother saw the extent of his pain, as my brother has been working a lot with his new job. I think he feels pressure to make his new job work so that he can take care of everryone. I think that really upset my brother to see Dad in so much pain, we are used to seeing our Dad looking strong and invincible. I spoke to a friend today who is the daughter of one of my Dad's oldest friends, she is a physio so she gave us some ideas for bed rest exercises and breathing exercise. The doctor called us yesterday and he said the CT scans make him think that there is secondary liver cancer. The biopsies will give us definite answers on that front. He has been told he can take 100mg Clexane in the morning and the evening, so twice daily. I'm sure there's loads more to say, i guess I'm just totally exhausted and my memory is pretty bad. I have to write everything down to make sure I remember it. I have made a file where I keep all the letters and research and paper work for Dad.. I have made him observation sheets where we write down his blood pressure, oxygen sats, pulse, pain score, temperature and how he looks and how he feels throughout the day. I also made a medication chart because I have to take meds too and it's so easy to get confused (the other day I forgot to take mine in the morning!) it's ok, nothing happened.. No seizures. I will call Brian tomorrow. And thank you, so much, for all of your support. It really is appreciated and valued. I hope you are well and I'll get back online tomorrow

  • Hi again, just to say, today has been so busy and I've been feeling quite sick.. So I never got round to making any calls.. Other than a few to the hospital this morning. Also made a call to a specialist DVT clinic in Hull and spoke to a nurse there.. He was so nice and very helpful. I had planned to call Brian in the afternoon but ended up taking a long nap next to my Dad and then I cleaned the kitchen! Then was building a new pillow tower under dads legs.. Got it perfected to a fine art now. It's getting a bit late now, but I'll aim to call tomorrow after I've had my physiotherapy (they cancelled it today but have rescheduled it for tomorrow.. It's a home visit so won't mean leaving Dad which is good) speak soon, hope you're well.. I must get onto the rest of the forum, there are so many interesting and informative posts on here!

  • Hi Amoobaa, thanks for all the updates. It must be really hard to have your Dad so dependent on you but it is good to hear that you are getting some support from your brother and the DVT clinic in Hull.

    This is not the time to be concerned about the morality of private health care! If Dad's firm want to help with some speedy, private help then you go for it; getting the best care for your dad is your priority.

    Make sure that you make some space for yourself and your own care in all this too won't you. You are obviously getting physio for something and getting tired with so much business. You can only help your dad if you stay fit and healthy so don't neglect you own needs.

    I hope that you are all geared up for tomorrow. it soumds like bad weather everywhere and time to pull up the drawbridge. I'd pop out and get whatever you need this evening if I were you.

    Hang in there and try to just take it a day at a time. It may be hard but your dad will not miss the amount of love and care you have for him and when the medical issues are all solved that is what will remain and a wothwhile legacy it will be. Talk again soon. Peter

  • Hi, sorry for the lack of updates. Still havent made the calls i was going to... My Dad's dr says he thinks that he has secondary cancer (in the liver) this would explain the clotting issue. The CT abdo/ pelvic scan showed nothing untoward anywhere else (we were assuming that there must be primary somewhere else if the dr is right). But dad has been coughing the last few days and brought up thick, dark blood so I went into hispital with him on Saturday. They CT'd his chest again and on the plus side the clots look a bit better. Of course we were worried about over anticoagulation though. He was discharged same day. He's been kept on the same doses of everything (Clexane: 100mg twice daily). before we left I asked the duty doctor some questions and he seemed a little unsure about telling us stuff... At one point asked us if Dad had had chemo.. And said he could see something abnormal re: pancreas. Exactly what we don't want. I had just discharged myself out of A&E the night before (Friday night) after being taken in by ambulance for a CT of my brain.. So I still had my hospital band on.. We looked like a right pair, me sleeping at the side of his bed.. I must have looked like I escaped from a neuro ward. We got out about midnight. According to the plane crash safety analogy, I know I have to fit my own oxygen mask before trying to help my Dad with his, but I can't help over doing it sometimes.. I love him so much and can't bear to see him suffer. Speaking of suffering, his left leg is much improved, though his right is still not good. The Clexane must be helping.

  • Hi Amoobaa. Don't worry about when you blog, it sounds like you have your hands pretty full right now. If they(or you) are giving Dad clexane every 12 hours you don't have to worry about blood clots, nor about any surgery or biopsies, either of which could take place only 12 hours since his last clexane jab. Glad to hear some good news about the reduced clots in his chest and the improvements his left leg. Lets hope that there are other improvements and good news to follow that up.

    I guess that the health service are providing transport to hospital for Dad. If not you should ask them to, especially when the weather is so bad.

    I hope that you both have good sources of entertainment when you're at home. Simply staying imobile with nothing to do except worry about medical problems sounds not a lot of fun. If the weather is like in Yorkshire at present then it is hard for visitors to call too.

    It sounds to me that you are not getting a lot of clear and definitive information about some of the medical issues here. Sometimes ignorance is bliss but in your case lack of information could simply provide a space to worry in. Does your GP do home visits and can't he or she get some clear information from the hospital for you? No harm in asking.

    Sorry not to be more help Amoobaa but at least be sure that we care and are always here to listen and chat. Keep it up, you're doing a fantastic job for your Dad and seeing your practical love will be meaning much more to him that you can possibly imagine. Talk again soon. Peter