HHT/Clots/Coumadin

[Barbara]

I do not have HHT, but my husband does. He (we) has dealt with nose bleeds and the red spots for quite some years now. In 2001, he was admitted to hospital when he threw blood clots from his right leg through his heart and into his lungs.  We had to educate the doctors on HHT at that time, due to the procedures for the clots. My husband was in ICU for 18 days, during which time a Greenfield Vena Cava filter was inserted to stop the clots from reaching his heart.
He did well until 2 weeks ago, when he developed clots in his left leg. We went to ER, and the doctors begin the IV drip to thin his blood. He was sent home and put on Coumadin pills and told that might be  for 4 months. My husband told the doctor that if he lasted four weeks, he'd be doing good. Jim lasted eight days and last night he had the worse nose bleed that he ever has experienced.
As someone else wrote on this forum: down on his knees, decorating the basin, wall, floor, asking for ice on his neck; myself, phone in hand, telling him we need to go to hospital ER: him repeating,"'not till I past out'. I'll be fine". Auggghhhhh!
Jim went into doctor this morning, told him what happened and the doctor said "keep taking the Coumadin..."
Jim said, "I think not. I know my system."  Soooo 'DR' Jim is not taking the Coumadin for 2 days.
Both times, these clots were formed from extended squatting while doing home repairs.
I am interested to hear if anyone else with HHT might possibly have also experienced throwing blood clots.

[bob]

Hi Barbara so very sorry to hear of your problems I am no doctor,but an anti clotting agent is not a good idea for anyone with hht,I am sure there will be other ways to reduce the risk of clotting without making it easier to start a bleeder.
I was advised many years ago never to take even a pain killer if it had any form of asprin in its make up,PARACETOMOL,are the only over the counter pain killers I was safe with,as most thin the blood.
Does Jim have regular body scans,and blood tests.

[spudzmurphy]

Hi Barbara,

Just a couple of quotes from a couple of relevent web sites:

Coumadin … Brand name for Warfarin:

1. From Coumadins own site:

Warning Bleeding Risk:

Warfarin sodium can cause major or fatal bleeding. Bleeding is more likely to occur during the starting period and with a higher dose (resulting in a higher INR). Risk factors for bleeding include high intensity of anticoagulation (INR>4.0), age >65, highly variable INRs, history of gastrointestinal bleeding, hypertension, cerebrovascular disease, serious heart disease, anemia, malignancy, trauma, renal insufficiency, concomitant drugs (see PRECAUTIONS), and long duration of warfarin therapy.

2. Wikipedia description of side effects of Warfarin:

The only common side-effect of warfarin is hemorrhage (bleeding). The risk of severe bleeding is small but definite (1-2% annually) and any benefit needs to outweigh this risk when warfarin is considered as a therapeutic measure. Risk of bleeding is augmented if the INR is out of range (due to accidental or deliberate overdose or due to interactions), and may cause hemoptysis (coughing up blood), excessive bruising, bleeding from nose or gums, or blood in urine or stool.

Doesn’t sound like something I’d be dishing out to someone with even a risk of HHT unless it was under strict suppervision.

Be well … Willie.

[spudzmurphy]

Sorry ... just noticed this little gem as well ...

3. Wikipedia description certain herbs to avoid if suffering from a bleeding disorder or taking an anti-coagullant such as warfarin:

Warfarin also interacts with the following herbs: [9]

·   Ginkgo (a.k.a. Ginkgo Biloba), which is commonly used to increase brain blood flow, prevent dementia, and improve memory. However, ginkgo may increase blood pressure, and may increase bleeding, especially in people already taking certain anti-clotting medications such as warfarin.
·   St. John's Wort is commonly used to help with mild to moderate depression. However, it may prolong the effects of certain anesthetic drugs and reduce the effects oral contraceptives and anti-organ transplant rejection medications, and interfere with warfarin.
·   Ginseng is commonly used to help with fatigue and weakness. However, ginseng may increase blood pressure and heart rate and may increase bleeding, especially in people already taking certain anti-clotting medications such as warfarin.
·   Garlic (as a supplement, not in the diet) is commonly used to help lower high cholesterol levels, high triglycerides, and high blood pressure. However, may increase bleeding especially in people already taking certain anti-clotting medications such as warfarin.
·   Ginger is commonly used to help nausea and poor digestion. However, it may increase bleeding, especially in patients already taking certain anti-clotting medications such as warfarin.

Be well … Willie.

[Barbara]

Hi Bob,
Thank you for your input here. Jim was on Coumadin the first time in ICU where he could be monitored. Then taken off, because of the severe nose bleeds that could of occured. We know Coumadin is not what we need in this situation.
Yes, Jim has never taken aspirin. Tylenol and thats on rare occasions. Jim is not one to take pills of any kind.  Upon entering the ER this last time, Jim was given a complete leg scan to locate the clot. Jim could not see the screen. I could see the problems on the screen as I sat next to him, trying to not express my feelings with my facial muscles!!! 
staff drew blood from him every 4 hours, for 4 days; monitoring him. His blood was perfect when he left hospital.
 When Jim went to Oncoloist  office to explain how bad the nose bleed was and that he could not take coumadin. The Oncologist did not  see him, just sent the nurse out with the message 'keep taking the coumadin'. We do not think the doctor is aware of the nature  of the situation. Tomorrow (Monday), Jim is requesting of his GP, a different Oncologist. Maybe he will have an answer.
Jim had 2 nose bleeds yesterday, and one this morning. We think it will take a few days for his blood to thicken a little.
To get off of us for while. Do you have these nose bleeds? And do you have the red spots?
Barb

[Barbara]

Hi Barbara,

Just a couple of quotes from a couple of relevent web sites:

Coumadin … Brand name for Warfarin:

1. From Coumadins own site:

Warning Bleeding Risk:

Warfarin sodium can cause major or fatal bleeding. Bleeding is more likely to occur during the starting period and with a higher dose (resulting in a higher INR). Risk factors for bleeding include high intensity of anticoagulation (INR>4.0), age >65, highly variable INRs, history of gastrointestinal bleeding, hypertension, cerebrovascular disease, serious heart disease, anemia, malignancy, trauma, renal insufficiency, concomitant drugs (see PRECAUTIONS), and long duration of warfarin therapy.

2. Wikipedia description of side effects of Warfarin:

The only common side-effect of warfarin is hemorrhage (bleeding). The risk of severe bleeding is small but definite (1-2% annually) and any benefit needs to outweigh this risk when warfarin is considered as a therapeutic measure. Risk of bleeding is augmented if the INR is out of range (due to accidental or deliberate overdose or due to interactions), and may cause hemoptysis (coughing up blood), excessive bruising, bleeding from nose or gums, or blood in urine or stool.

Doesn’t sound like something I’d be dishing out to someone with even a risk of HHT unless it was under strict suppervision.

Be well … Willie.

[Barbara]

Hi Willie,
Looks as if I hit an incorrect botton, so now we have all the info twice. Sorry.

Thanks for the info. We are going to be firm about this, as you can see in my message to Bob. There doesn't seem to be strick supervision with the current Oncologist.  What part of  'fatal bleeding'  does this doctor not understand. . .
We live in a community of doctors. There are doctors and there are Doctors.  And sometimes,  you have to look for the Doctor.

2001, Jim spoke with Dr. Robert I. White at Yale U. (ww.yale.edu) established foundation to support and study HHT and we traveled to Charlotte, NC to Dr. E. Bolz (also well versed in HHT).
A year or so ago, we found online a combination that was suppose to help Jim deal with the nose bleeds. Vit K (which we since found was a no-no), Vit C ' with Bio-flavonoids (also a no-no) ' and Cayanne pepper was the other. Jim is researching the Cayanne again and has found that this might be good reduce  blood cloting.

Thanks again, Barb

[bob]

Hi Barbara,in answer to your question yes I do get nose bleeds,some short,and light, some as a torential downpour varying in duration from a few seconds to 25>30 mins,the latter being panic time for the ambulance.
I have many many telangiactasia on my face, head,ears ,fingers and in the mouth,with the exception of the fingers all can bleed with just a mear, energetic drying with a towel.
I have looked for all my hht effected life for a person with the same spotting as myself,with the exeption of my now deceased kin,  I, to this day, have only seen one other,a lady whom I did not approach for fear of embarassing her,and that was not in my home city.
 Often I think when it comes to problems of hht,depending upon your region,you can be almost on your own,I find it can be avery misunderstood disorder.
My nasal bleeding alone dictates most all,and sometimes all of my day,it can be so bad at times that I cannot promise anyone to be anywhere at a set time,or even get there.
Well must say sorry for my moan,after all I am only supposed to be replying to your questions.

Give Jim my best wishes,take care Barbara.........
BOB........

[Barbara]

Hi Bob,
Looks like I haven't been on site for a few days. Jim went complelely off the Coumadin; his nose bleeds gradually lessened over a four day period; he is actually doing pretty well. Back to having one, sometimes two nose bleeds a day. Nothing like several weeks ago. He often will have a watery blood drip from his nose. Always has a tissue in his pocket.
And yes, he gets very frustrated. It truly controls your activity for the day, doesn't it. Many a time at a restaurant Jim has to make a mad dash for the restroom. The situation can really clear the restroom out-fast! And that is embarassing for him. And I feel so bad for him.
So you may moan away, Bob, for it is not fun.
Jim has had some telangiactas removed from his face. The first was done here in Florida waaay back in the 70's. We didn't even know what it was. Just had a good friend doctor think that since it bled a lot, it should be removed. Jim had 4 facial dots removed 2004 when we went to a specialist in Charlotte NC. The ones on his face are small and don't bleed. (He doesn't get energetic with the towel. . . ) He recently found one on his tongue and he has quite a few on his hands and arms. I noticed more small dots after this blood clot incident.
The doc in NC said, that one of his patients has bleeding telangiactasia on his hands and has to keep bandages on. That is sad. We know Jim could be much worse off than he is and we keep a very positive outlook on the situation.
Jims fathers family is of German descent. His father and his father's mother had HHT. Our daughters and our grandchildren need to be tested. Try to hold them down long enough for that to happen!!!!
It's a busy world. We are retired, enjoying our hobbies and loving every minute of it.
Our best to you, Bob.
Barbara and Jim

[labgirl]

Reading on the coumadin problem with interest. Low-molecular weight heparin might be feasible. It's given as a shot (you can do this at home). Less monitoring necessary, far safer. Heparin does impact a different coagulation pathway, but it still might work. In any case, is preferable over rat poison