Out of the Woods
It’s been over 7 months since the health scare I had in the early part of the year, and I have been encouraged by a few friends to share this update with everyone. Regarding my part for the delay in writing, I was waiting to to see if the actual procedure (trans jugular portal vein recanalization) that was performed to place a shunt a few weeks after was patent and actually doing what it was intended for. So today after recent check-ups with my doctors, I am happy to report that the shunt that was placed between my hepatic and portal arteries via vascular surgery has lessened the impending danger of another internal bleed. Although the clot to the portal vein of my liver is still present, the pressure is now lower in the surrounding arteries thus staving off enlargement of the varices in both my esophagus and stomach and putting me back into the safe zone.
This past February 8th I was taken into the hospital by ambulance for chest pressure and shortness of breath. After a battery of tests in the ER including a CT scan, x-ray, and blood work it was determined that I had a slow bleed from the varices (see link below) in my gastrointestinal tract. The varices developed as my arteries became engorged by the pressure around the portal vein due to it being clotted off more than 18 years ago. The blood work taken on that day revealed that my hemoglobin was very low, as were my red blood cells. For treatment I was given 2 units of blood, several IV’s (even 5 at one point), 3 iron infusions, and a platelet transfusion within the week I was there. Near the end of my stay I had a gastrointestinal endoscope, a risky procedure considering my condition and the complexity of the same. The endoscope revealed that the varices in my esophagus were too large to band and that I had formed new collaterals making the risk to bleed even a higher volume of blood than before.
Prior to the February 8th incident, I learned about a relatively new procedure called a PVR-TIPS. This procedure is less evasive as compared to other operations, and it entailed placing a shunt down through the jugular vein to bypass the major clot in my portal vein. The shunt acts to restore blood flow lessening the chance of a catastrophic bleed from all the arteries around the liver that had become engorged over time. The shunt is placed between the portal and hepatic arteries in order to lessen the pressure off the varices and allowing them to shrink.
Dr. Riad Salem an interventional radiologist and researcher from Northwestern University in Chicago was the specialist who had found my blog a year earlier in March 2020. Dr. Salem contacted me directly via email to say that he thought I would be a good candidate. A few years earlier Dr. Salem and 14 other researchers had previously tested and developed this method primarily for patients about to undergo liver transplants. The procedure had also been proven to be successful on others like myself (without liver disease) who have non-cirrhotic portal hypertension. Dr. Salem requested that I send my latest scans from the fall of 2020 to Chicago, and after reviewing them confirmed I would be suitable for the operation. He stated that there was a clear path present to take the pressure off internally and restore blood flow.
Dr. Salem, a fellow Canadian, fully understood the enormous cost to send me to Chicago for this procedure. He said Alberta Health would likely turn me down, so he referred me in the fall of 2020 to Dr. Richard Owen, a former colleague and another renowned interventional radiologist who practices at the University of Alberta hospital in Edmonton. Dr. Owen contacted me to say he also felt confident that he could perform the procedure, but that I was a complicated case. The procedure was put off until March 10th due to Covid protocols at that time of my bleed, so under the guidance of Dr. Owen, and assisted by Dr. Kiran Reddy (Interventional Radiologist Fellow) the procedure went ahead. Interesting to note that just prior to the procedure the GI specialist on call that week told me that they had only one chance to make it work and so here I am to say that indeed it did. I also learned that I was only the second person in our country to have had the PVR-TIPS performed, so I feel very blessed knowing that.
Two Steps Forward… One Step Back
Not wanting to sound pessimistic, my health future is still not known, and my doctors all say I need to remain on all the prescribed medications I have taken since the onset of portal hypertension. This is due to the fact I still have an unknown genetic clotting disorder (mentioned above) which is the underlying cause to my issues. The shunt could clot off or I suppose anywhere else for that matter. On the bright side, the shunt is open, and the pressure when measured again through the jugular vein several weeks after the procedure showed that the shunt is doing its job of holding everything at bay.
Another lurking issue within me is the fact that my gall bladder is full of stones, and cannot be removed easily due to the imminent danger of a serious bleed. I am reminded of this fact when I get severe abdominal pain from time to time. For now that pain continues to subside after awhile and it means that one or maybe more of the stones has made its way back to the gall bladder instead of moving through the bile duct and complicating matters. When a stone moves into the duct, I get very jaundiced and pain is evident until the offending stone moves back down into the gall bladder.
I’m still on all the meds I was on before the procedure, as the clot is still there. Just yesterday I was in the outpatient clinic receiving a iron infusion, which I still have to have every 8 weeks due to my ferritin levels. The clot in my portal vein is still there, but the pressure has been brought down so as long as the shunt continues to stay open I am good to go, for how long I don’t know – so I just keep moving ahead.
“Gratitude is the ability to experience life as a gift. It liberates us from the prison of self-preoccupation.” – John Ortberg
For all the prayers and kind thoughts from many over the years, I am very grateful. There have been times of real and present danger and those times I have especially felt at peace with the knowledge that others were cheering me on. A very significant and the most humbling news back in February was the few friends who took it upon themselves to donate life giving blood in my honor. That was truly amazing!
After All is Said and Done
If you or your loved one has the rare condition of portal hypertension I would encourage you to ask your doctors or contact Dr. Salem’s office directly if the option of the PVR-TIPS is something that should be considered. The standard TIPS is still being performed with success, with the difference of it being routed through the liver as opposed to the spleen (PVR-TIPS). Below is a link to a previous blog post that I created that includes Dr. Salem’s contact information at North Western University in Chicago, or if you are in Canada you might want to contact Dr. Richard Owen at the University of Alberta via the link provided.
Links to View
Dr. Salem: https://www.feinberg.northwestern.edu/faculty-profiles/az/profile.html?xid=17542
Dr. Richard Owen (University of Alberta Hospital via MIC): https://www.mic.ca/our-radiologists/dr-richard-owen/
Portal Hypertension Video:
Buenas noches !
Tengo Hipertensión Portal por trombosis de la vena porta, a causa de mutación Y