Personal Medical Update: New Terminology

by Clint on November 18, 2012

It’s been a few months now since I was admitted to the hospital (08.26.12) with yet another new blood clot, and this  last time it was discovered in the superior mesenteric vein.  I am happy to report I am doing quite well now, with no pain in the immediate area so it would seem the TPA (thrombolytic therapy) I was administered in the hospital worked to dissolve the clot.  To say I am grateful would be an understatement as the complications from the latest episode could have been quite disastrous from what I learned.

On reading through the discharge summary I received from my family doctor several weeks ago, I have had to go back and research some of the terminology within that report.

 Since the original diagnosis of my condition in 2002, I was told that the homocysteine levels in my blood were high.  At the same time I was tested for all known causes as to why these levels were high, but all the results came back negative and the real cause has never been pinpointed in what one could call “the genetic realm of things”.  The report I received from my doctor stated that I have a history of hyperhomocysteinemia with an elevated factor VIII level.  This has caused hypercoagulability and as a result I have clotting, in the adjoining portal, splenic, and mesenteric veins respectively.    This new clot  settled below the existing clot in the superior mesenteric vein (see diagram below) causing restricted blood flow to my abdominal cavity, which in turn caused the arteries in the bowel to distend explaining the pain I had for 2 weeks prior to being admitted.  To better understand hypercoagulability here is a really good site which I believe explains it well:  http://labtestsonline.org/understanding/conditions/hypercoagulable-disorders/

There’s more…

Prior to this latest episode I had been prescribed a drug called Pradax (dabigatran etexilate), which is used to prevent harmful blood clots from forming and normally is prescribed to patients with atrial fibrillation.  New research has shown the overall effectiveness of the drug for other clotting issue to be quite positive.  In my case, its not clear if the drug allowed the new clot to form, because as you know one person can react much differently to medications than another.  I don’t lay blame on the doctor who prescribed it nor the drug itself although for sure it could have played a role in causing the clot, but I was very happy to be on the medication because it was taken orally as opposed to the 7+ years of poking, prodding, bruising, not to mention scarring from all the injections over this period of time.  So while in the hospital,  I was put back on Fragmin (low molecular weight heparin) as being the safest way in treating my clotting condition, and despite the unpleasant side effects of these needles mentioned above,  I am back to injecting myself twice daily.   I have to admit though that I am much more willing now to accept the fact that I have to use Fragmin than ever before as I have virtually been free of any new clotting since being prescribed way back in December of 2004.   Because my homocysteine levels have always been high, I have also been taking Vitamin B75 to help combat this issue from another angle.

When I was discharged I was given the actual report from the CT scan while in the emergency department which revealed the clot, but also accentuated the fact that the varices  in my esophagus were even more engorged than a previous scan I had back in 2009.  The scan also showed that the gallbladder wall was irregular and thickened due to portal hypertension.  While the pain was present for about almost 2 weeks before I went into emergency, it was thought all along by my doctors that it was caused by the gallbladder itself.   In February of this year, I had been having some discomfort just under my right rib cage, and at that time my doctor ordered an ultrasound of the abdomen.  That ultrasound did show gall stones and thickening.  In fact I am still being treated with a drug called Ursodiol which was prescribed last February as a ultrasound I had then revealed gall stones and thickening around the gall bladder itself.   I saw a liver specialist at the end of October for follow-up,  this being the same doctor who in 2006 recommended that surgery was a very dangerous option for me then let alone now.  In 2006 I was being considered for a rare operation called a Multivisceral Transplantation (cluster transplant) that would have included the liver, pancreas, stomach, and small bowel.  The thinking of course is that it would have eliminated the clot in the portal, spleenic, and the original clot to my superior messenteric vein.  At that same time the team of doctors reviewing my case were considering a TIPS procedure, which was ruled out because I was doing so well.  Conclusively any operation would be highly dangerous because of the risk of bleeding, and the possibility to clot is definitely another risk factor to be concerned about.

The regiment of medications and injections have remained a constant for me for several years now as are the frequent required blood testing, and doctors appointments.   Pain, when it comes is quite intense, and thankfully only intermittent at best.  Pain usually is accompanied by an irritable bowel, which can be most inconvenient, especially  if you have to be out anywhere. As with most people with the condition I am on high dosage of nadolol (beta blocker) which is used to keep my heart rate low and hopefully prevent bleeding from the varices.  The current dose I am on causes me to be quite fatigued at times, and in the afternoons I struggle sometimes to stay awake .      As with any chronic health conditions there are challenges, however I feel very blessed that I am still alive, but also that I have access to  good health care in the area where I live.  That being said, I know in many places around the world access to good health care is a real issue,  and I am conscious of that as I continue to write this blog.  In the end I  always hope (and pray) things will improve for those of us with portal hypertension, and that a cure or new treatment will one day be available to everyone, no matter where you live.

In your corner,

Clint

To read a prior update on my condition click here.

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