Re: Multiple Bloodclots (, Aubrey, Van -- HELP!!)

[Guest guest]

-----Original

Message-----

QUESTIONS -- Has anyone gone from one clot to multiple, extensive

clots at all (much less within just a few weeks)?

Yes Ken did, post transplant….. His “clot list” includes: Superior mesenteric vein, Portal vein, Splenic vein (plus it has 3

aneurysms in it.) His report

states: Inferior Mesentery vein is not well seen, but collaterals are seen in it’s place (so they think it too has a clot.) His proper hepatic artery has a “high

grade” stenosis, extending almost to the bifurcation of right and left hepatic

arteries. So yes he has blood clots

everywhere too.

Are we likely to see the clots to continue multiplying like this?

No! I don’t think so, because once your

tooth is repaired, you’ll be on Coumadin (and probably Lovenox just until

your INR goes up to the level they want) and that should stop any more from

forming.

If the whole blood supply back to the liver gets bogged down……(Yes,

the report does mention inferior mesenteric venous collaterals are

noted, but is that enough??

It can be and the more

blood that backs up, the more collaterals (of all

sizes) your body should make. If you were listed and waiting for a

liver, it wouldn’t be so bad, because all of these problems would be

corrected with a new liver, but I remember you telling us you weren’t

going to get a transplant. So yeah

it’s a big problem especially in connection with cirrhosis. I’m really sorry you’re

having to go through this. You’ll

certainly be on our prayer list.

Get that tooth fixed! HTH

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

[Guest guest]

-----Original

Message-----

QUESTIONS -- Has anyone gone from one clot to multiple, extensive

clots at all (much less within just a few weeks)?

Yes Ken did, post transplant….. His “clot list” includes: Superior mesenteric vein, Portal vein, Splenic vein (plus it has 3

aneurysms in it.) His report

states: Inferior Mesentery vein is not well seen, but collaterals are seen in it’s place (so they think it too has a clot.) His proper hepatic artery has a “high

grade” stenosis, extending almost to the bifurcation of right and left hepatic

arteries. So yes he has blood clots

everywhere too.

Are we likely to see the clots to continue multiplying like this?

No! I don’t think so, because once your

tooth is repaired, you’ll be on Coumadin (and probably Lovenox just until

your INR goes up to the level they want) and that should stop any more from

forming.

If the whole blood supply back to the liver gets bogged down……(Yes,

the report does mention inferior mesenteric venous collaterals are

noted, but is that enough??

It can be and the more

blood that backs up, the more collaterals (of all

sizes) your body should make. If you were listed and waiting for a

liver, it wouldn’t be so bad, because all of these problems would be

corrected with a new liver, but I remember you telling us you weren’t

going to get a transplant. So yeah

it’s a big problem especially in connection with cirrhosis. I’m really sorry you’re

having to go through this. You’ll

certainly be on our prayer list.

Get that tooth fixed! HTH

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

[Guest guest]

Hi Carolyn;

I'm so sorry to hear about your multiple blood clots. I would agree

that anti-coagulation therapy would be the best course. Has the

hematologist tested you for high homocysteine levels (hyper-

homocysteinemia):

Giuseppe Famularo, Giovanni Minisola, Giulio Cesare Nicotra, Claudio

De Simone (2005) Mesenteric and portal vein thrombosis associated with

hyperhomocysteinemia and heterozygosity for factor V Leiden

mutation. World J Gastroenterol 11(48): 7700-7701

http://www.wjgnet.com/1007-9327/11/7700.pdf

Best wishes for a speedy recovery from all of the clots ... I hope

getting your tooth fixed will not delay this for too long for you.

Dave

(father of (22); PSC 07/03; UC 08/03)

[Guest guest]

Barb,

Thanks so much for your careful and detailed reply!!!! I somehow hadn't

realized Ken had

so many clots too. Did he have any of these clots prior to his transplants?

Tooth is scheduled to be repaired 3:30 tomorrow, however, the last tooth which

acted this

way kept breaking off new bits after every filling and it didn't settle down

until after the

4th new filling which took about 6-8 months overall, and I certainly don't have

that kind of

time to waste now!

There are 2 other teeth which have begun to shows signs of loose fillings also,

and so I

just don't know how long this will take. Obviously I don't want to go slowly

here, but it's

going to take a little time to do all this (and hope that no other teeth start

collapsing in

the meantime!).

Fortunately, our dentist is also a good friend and is very concerned about me.

He will do

everything possible to get me where I need to be.

Regards,

Carolyn B. in SC

[Guest guest]

>

> ..... Has the

> hematologist tested you for high homocysteine levels (hyper-

> homocysteinemia):

=================

-- I do not see homocysteine on my lab reports. He has tested Prothrombin

time, INR,

PTT, Fibrinogen, D-Dimer, Antithrombin 3, Protein C Functionality, Protein S

Functionality,

Factor V Mut Indica, Factor 8, and Prothrombin DNA.

I will print out the study you cited and take it to my next appt. with the

hematologist. Many

thanks!!

Regards,

Carolyn B. in SC

[Guest guest]

-----Original

Message----- On Behalf Of

Has the hematologist tested you for high homocysteine levels

(hyper-homocysteinemia)……

factor V Leiden mutation.

Except….. there is a history of liver disease.

Carolyn, your doctor

did test for it. It’s one of

the tests you cited - “Factor V Mut”

(stands for “Factor V Leiden Mutation”.) Or at least that’s to the best of

my limited knowledge.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

[Guest guest]

>

> Carolyn, your doctor did test for it. It's one of the tests you cited -

> " Factor V Mut " (stands for " Factor V Leiden Mutation " .) Or at least

> that's to the best of my limited knowledge.

=======================

That's exactly what makes this group so incredibly exceptional!!! I wasn't sure

just what I

was looking for, so I listed everything on my report!

Unfortunately, the report I have says under Factor V Mut Indica -- " See report

note "

Arggggghhhhh!!! So I don't know if it's elevated or normal or low or whatever!

Obvisouly

need to call his office tomorrow and get clarification on the results of this

particular test.

Again .... a million thanks, Barb!!!

Regards,

Carolyn B. in SC

[Guest guest]

Hi Carolyn;

In inflammatory bowel disease the two major risk factors for

thromboembolic complications seem to be hyperhomocysteinemia

(elevated serum homocysteine) and factor V Leiden mutations.

Oldenburg B, Van Tuyl BA, van der Griend R, Fijnheer R, van Berge

Henegouwen GP (2005) Risk factors for thromboembolic complications in

inflammatory bowel disease: the role of hyperhomocysteinaemia. Dig.

Dis. Sci. 50(2):235-40.

http://www.ncbi.nlm.nih.gov/pubmed/15745078

So it definitely would be worth asking for a clarification of the

factor V Leiden mutation screening result. It might also be worth

asking if it would be necessary also to test for elevated

homocysteine? I don't think the two are connected in any way, and

they may be independent risk factors for thrombosis. But the answer

might be important in preventing future occurrence?

Best regards.

Dave

(father of (22); PSC 07/03; UC 08/03)

> -- I do not see homocysteine on my lab reports. He has

tested Prothrombin time, INR, PTT, Fibrinogen, D-Dimer, Antithrombin

3, Protein C Functionality, Protein S Functionality, Factor V Mut

Indica, Factor 8, and Prothrombin DNA.

[Guest guest]

Hi Carolyn;

I'd like to clarify my statement " I don't think the two are connected

in any way, and they may be independent risk factors for thrombosis. "

One study suggests that the combination of factor V Leiden mutation

and elevated homcysteine gives a greatly increased risk of

thrombosis ... " far greater than the sum of the individual risks

associated with either abnormality alone " :

Ridker PM, Hennekens CH, Selhub J, Miletich JP, Malinow MR, Stampfer

MJ (1997) Interrelation of hyperhomocyst(e)inemia, factor V Leiden,

and risk of future venous thromboembolism. Circulation 95: 1777-1782.

http://circ.ahajournals.org/cgi/content/full/95/7/1777

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)