Hey everybody. I joined this site a while back as my boyfriend has Hughes Syndrome. He was diagnosed with it 1 year ago and has blood clots on the lungs. He gets very out of breath and his heart beats very fast to compensate for his lungs not absorbing enough oxygen. He has been on Warferine to treat this. but sadly after one year the blood clots have not reduced or gone away. He has recently had the news that his brain is getting less oxygen and causing damage to brain cells. He has been asked to sign a form allowing them to prescribe dangerously high levels of warferine now to battle this.
Please has anyone been in a similar situation to offer advice as my boyfriend is at the point of feeling like he is not getting any better and is really down..
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It might be worth suggesting that they try him on Fragmin (low molecular weight Heparin) injections instead of Warfarin to see if that makes a difference. It did with me and I am now on Fragmin for lief and I feel much better than I did on Warfarin. I had clotting incidents on Warfarin but I have not had any on Fragmin.
My boyfriend lives in Bournemouth (and myself Exeter) and I do not know who is his APS specialist.. I will ask him. Thanks for your information; I will pass this on.
hi, I tried to get hold of doctor bell in poole hospital. they said he wasn't there anymore. he was also listed at a private hospital, but he is not their either
Hi Mary, please can you tell me who is a specialist in the Leicester area, having difficulty getting INR right and been pretty poorly over last few weeks. Been working but a real struggle.
My dear, I am so so sad to read your message - you must be feeling helpless. I have no words of help, beyond that you must talk to a phlebotemist consultant without delay. Ring your hospital & get reception to out you through to the right dept, & get the help you need. It truly is a case of fighting to speak to the right people - it can be difficult, I do know, but wish I had done this one thing years ago. I too had clots on the lungs, & have been on 5mg Warfarin for nearly 5 yrs, now stable. I have lupus, Hughes' syndrome (a surviving patient from Graham Hughes' original research programme from the early '80s), am also a coealiac! Have chronic osteoporosis, hyperthyrodism, & have had a lifetime of chronic bowel problems having just had Delorme's operation in June which was really awful - I am nearly 85 but think it really helps to be positive & forget
Your boyfriend can be happy to have you to help him!
The problem is that he needs a SPECIALIST of APS. That is a must! Sometimes we need high levels of Warfarin as we have so thick blood. I guess they have suggested an INR around 4.0. I have that. With the right Specialists (even an lung/heart Doctor) around him he will manage as he also is young and has had it only one year.
I have Pulmonary Hypertension and leaking heartvalves and do Ecocardiographies every year. The Doctors are nowadays so skilled on lung and heart-issues so with the best Doctors he will be fine I am sure.
Very good advices from Mary and Dave also and a list of different Specialists. When you ask about the name of the Doctor who is with your boyfriend at present. also look at the list if he is on it perhaps.
Twelve years ago I had a stroke after experiencing shortness of breath, undiagnosed by my GP at the time. Whilst under the care of a London hospital,many clots were discovered on my lungs and I was subsequently diagnosed with APS.I made a good recovery from the stroke and I am now taking warfarin which is very well managed by my present GP and Dr.H.Cohen at U.C.H. Fragmin was necessary for me recently whilst undergoing minor surgery. Warfarin has to be taken with careful management and understanding on behalf of the patient.It seems to me that your boyfriend has not received the correct management and guidance necessary for living with APS and the necessary treatment.Hope all goes well.
Thank you so much for all of your replies.. I have only just seen the replies..... my boyfriend is also a member here and reading the messages gratefully... hopefully he will find the emotional strength to open up on here too soon xx
This afternoon I will take time to read all and answer properly .. take care all and have a good day...
When I asked b/f this morning as to who his APS specialist is the answer I have just got (via skype message) and its easier just to paste this rather than rewrite: (and he doesnt mind me doing this btw)and please bear in mind that he gets brain fog sometimes :
APS SPECIALIST
"I don't have one- i was supposed to see doctor Mainwaring, who is a haematoligist, but instead i got the same lung specialist i have had all along, the one who has got so much wrong. he says he talks to dr Mainwaring about me but he never asks about anything but my lungs, and seems uniterested in the side effects bear in mind he was the one that had me on rivaoxaban for 8 months, when it wont work with my illness - not even cleared for treating aps ( i didn't know that then)- I think my specialist is doctor hughes, not sure though..."
When asking about Warferine the answer is:
"they are aiming for an INR of 3- 3.5. however after the lung perfusion test they have asked for it to be upped a lot. the amount i take varies week to week, but usually about 4mg"
He is only on Warferine for treatment at present and painkillers.
I have suggested he ask about oxygen bottle as treatment due to his low brain oxygen levels.. he was offered this a year ago but declined, but I think it would be a good idea. so he is going to ask doctor about this too..
Hi. I am purplestars boyfriend. My name is kevin. I have looked on posts here before, infact a lot of what I have learned about aps has come from here.
My lung clots were first diagnosed October last year. That was after a long period were my doctors said my problems were stress and anxiety. I pushed and pushed, and oddly enough the day they said I might have clots was they day after I collapsed on a short walk to my local shop.
purple has told you my medications. Too say I am frustrated about my recovery would be an underestimation.
saw a doctor a couple of months ago that said unless they could control of my clots I would have the hear and lungs of a 70 year old in 2 years. not a nice though (unless you are 70)
running out of options and ideas. thanks purple for posting
UPDATE - they are increasing my wharafrin to try and get INR of between 3.5 and 4.5 -target 4. It was previously 2.5 to 3.5. They also want to check me twice a week.
I have made contact with the Nuffield private hospital with a view to getting a second opinion.
Hi, I wonder if you have tried to get a referral to Prof Hunt as your Specialist APS-Doctor?
Yes, some Specialists are better than others and prof Hunt is one of them. APsnotFab suggests this doctor and an urgent appointment. I would definitely follow her advice. You should have the best - it is your life.
Why I say this is that I have been on this site for at least 4 years and for one year I was also an Admin and I trust the Admins 100 %. We both know that we need a Specialist for our illness.
As to the Warfarin I have today an INR between 3.5 - 4.0. I get a Fragminshot if the INR goes to low. I have Pulmonary Hypertension from this illness.
I get frightened when you do not take your situation seriously. I know what I am talking of!
Good news guys - Kevin has received a call from Dr Mainwairing and he is taking over the case and proceeding to do other tests.. all is going in the right direct it seems.. I, in the meantime, will remind Kevin of the helpful suggestions you have all put above and ask him to consider this.
Dr Mainwaring has been great. He has asked for my vit D and calcium levels to be checked. Already requested an appointment with a rheumatologist, and also things they need to investigate Fibro Myalgia. Even got a personal letter from him the post today.
All of a sudden I am feeling much more positive !
I want to give hima try before I look at going private.
PTE Surgery
Dear purplestars - my 26 y/o daughter had this same described condition until 3 months ago when she had surgery to remove PE (blood clots in her lungs). She was mostly being seen prior to then only by Rheumatology specialists at 6 top medical institutions across the country over an 18-month period, who all unfortunately completely missed what was actually going on. I only say this to exemplify how elusive what I am writing to you about, is.
There is a rare surgery being done called "PTE Surgery" which is short for Pulmonary Thromboendarterectomy. This is a lifesaving procedure that is only done at 3 or 4 hospitals here in the USA that REVERSES lung blockages due to blood clots (pulmonary embolisms, or "PE") by surgically removing them. When it gets to the point that your bf's lungs are not getting enough oxygen, that is seriously important. A year ago my 26 y/o daughter presented with exactly what you describe. Blood clots in both her lungs & pulmonary arteries were discovered to be blocking oxygenated blood from the heart. She was dizzy, even passing out sometimes as it became harder & harder for her to breathe, even 'on the flat': shortness of breath became the norm. Importantly, your bf must be seen asap to rule it in or out. Please see links below at the very end of this post for info.
* In the UK, Endarterectomy is being done at Papworth Hospital - a very good resource to call for help.
Having just spent the past year as the mother of a daughter with PE blockages and finding a solution to save her life, I urge you to have him seen by a pulmonary SPECIALIST.
Also, for others reading this post, know that difficult breathing is often misdiagnosed as general "COPD" when instead it is actually blood clots in the lungs (see below links) that many of us are unaware of having. The trick is to see a pulmonary specialist who can determine through CT scan whether you or your loved one has PE (blood clots) & therefore CTEPH: (Chronic Thromboembolic Pulmonary Hypertension). This hypertension is deadly; it is the result of PE blockages in the lungs, eventually causing dizziness, passing out, etc. Symptoms are imperative to heed: the right side of the heart is trying to pump oxygenated blood to the lungs but encounters resistance from the blockages; the heart meanwhile enlarges. Eventually the patient suffers heart failure. Therefore, the clots must be removed asap. And if the patient is not yet on anticoagulant therapy, it is mandatory protocol to prevent new clots.
*A red flag: IF he possibly has CTEPH from blood clot blockages, higher doses of Warfarin is not the path. There are lifesaving meds called vasodilators that are instead used specifically. Please see: "ADEMPAS". Pulmonary specialists at Papworth will know this.
Sadly, some people (just like my daughter before we found all this out a year ago) don't even know that they have PE, or pulmonary blood clots.
The only hospital here in California that does this lifesaving surgery is at the University of San Diego Sulpizio Cardiovascular Center. It has become the go-to place in the country for PE, PTE, CTEPH (please google to learn about all this, see if it may be a fit).
Below is a link for more information about CTEPH ((Chronic Thromboembolic Pulmonary Hypertension) which, again: occurs as a result of blood clot blockages blocking blood flow from the heart. I'm repeating it because I know there's a lot in this post, I know it can be confusing.
UC San Diego Med Center is trying to get the message out to the world about CTEPH, as patients are often misdiagnosed with "COPD" because Xray will not usually pick up blood clots in lungs, and unfortunately most general family doctors stop there. However, the concern is that there are many people walking around with pulmonary blood clots that will never know it, and therefore never get better.
It is imperative for anyone reading this who has these symptoms to take it further yourselves and request a referral to a pulmonary specialist immediately. Again - I took my daughter all over the country for help before an astute doctor changed our course and urgently referred her to a pulmonary specialist, who immediately discovered her CTEPH. No one else had even considered it so until a year ago, we knew nothing about it either and had seen many doctors. She is now 3 months post-PTE surgery and can breathe again. It has completely changed her life. She is no longer bed-bound on oxygen, and no longer afraid. She's happy. She gratefully has her life back.
Please Google all of these terms for yourself to read more: CTEPH, Thromboendarterectomy, PTE
* Link follows validating all of the above - scroll down to "CTEPH - Getting The Right Diagnosis": tinyurl.com/mjzv84p
* Link follows re: UCSD, their attempt to get the word out, and the pioneering surgeon Dr. Madani who just gave my daughter's life back to her: tinyurl.com/y97aq6ev
I'm not saying this is what he has, I'm just saying this is how my daughter presented and I am trying to help. No matter what, your bf needs medical care from a pulmonary specialist familiar with CTEPH.
If we can help just one person from what we have learned & experienced, then this long post was well worth it.
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Clots, long lasting in lungs
more clots
APS/Lungs
Concerning Micro clots?
Micro clots 
