Portal Hypertension … A Few More Answers

by Clint on November 1, 2010

The  much anticipated appointment with my Gastroenterologist has come and gone (over 2 weeks past).  In a prior post I mentioned that  my  doctor had been away for a year on a study leave specifically regarding Portal Hypertension.   She studied at both The University of Barcelona (Spain), and also at the Yale School of Medicine in New Haven, Connecticut.  For myself personally I had hoped to at least learn of any new developments on the Portal Hypertension front, but unfortunately in my case, that was not to be.  All being said, I have decided to hold off on posting my personal thoughts until my next post as I would like to dedicate a few more lines on the subject than what I rightfully should do here.   So as promised I will address some of the specific questions a few of my bloggers had for my Gastroenterologist in which I was able to ask her on my last appointment.

Audra wanted to know what my doctor had to say about heart rate during exercise for patients with Portal Vein Thrombosis (PVT) and Esophageal Varices.  She takes Propranolol (10 mg twice per day) to lower blood pressure.  She also takes a diuretic to prevent ascites.  In response to Audra’s questions my doctor said that it is not recommended to engage in exercise that would elevate the  heart rate to dangerous levels  which would counter the role of the Nadolol to lower blood pressure in order  to prevent bleeding from the varices.  She did not say that exercise for PH patients was a bad thing at all, but that it should be moderate in nature.  She suggested walking as a good alternative to an intense cardiovascular workout such as running or aerobics.

Audra also asked will esophageal varices continue to develop after several bandings, or will they eventually be completely eradicated?  Unfortunately the answer to this question is something none of us really want to hear.  Yes varices will develop after banding, and no the varices sometimes will not be completely eradicated!   (These very same questions had crossed by mind and I know many of you also).  In the event that patients (myself included) who are on high dosages of anti-coagulants and evasive measure are taken to band the varices after a bleed, there is the added risk that bleeding would not stop from the site where the varices were removed.  When the varices “slough off” after banding there would remain ulceration and this is where the bleeding would likely continue.

Cheryle sent me an article from The New England Journal of Medicine in turn that her own doctor from the Mayo clinic had originally sent her. The article entitled Mesenteric Venous Thrombosis primarily deals with the subject of “onset pain”, but really does not deal with the condition of “chronic pain” as associated with PVT.  Cheryl wanted to know how doctors are treating patients with chronic pain associated with Portal Vein Thrombosis and it associated side effects.  Well, I am sorry to report that my doctor did not shed much light on this subject, but only stated that this type of pain is extremely challenging to treat because of it being vascular in nature.   I know of more than one person who I have met since I started this blog, who are on Fentanyl patches to combat the pain.  Fentanyl is normally used for breakthrough cancer pain, and it is considered to be one of the highest forms of prescription medication one can take to combat pain.  From personal experience, when I get onset pain my prescribed medication (Codeine) and a few other “natural remedies” help a little to take the edge off.  Codeine is an opiate used for its analgesic, antitussive, and antidiarrheal  properties. In prior posts I have mentioned that soaking in a warm tub, taking a few drops of  Oil of Peppermint along with  honey in a cup of warm water, plus  the pain medication can help soothe  the pain.  When the pain is severe enough though,  nothing can touch it, so unfortunately I usually have to ride it out until it subsides.  I know this is not the case for many of you, and my heart goes out to you … just wish I had more answers?

Cheryl (not the same Cheryle as the above) wondered  how long it would actually take for varices to develop?   Unfortunately my doctor stated that the time frame was short and that varices could develop within weeks.  On a side note, Cheryl has herself been referred by her own doctor to my doctor here at the University of Alberta in Edmonton.   As with many of us Cheryl also has endured much, and in many ways her condition is extenuated by the fact that she also suffers from Lupus. For Cheryl’s sake I sincerely hope she gets more answers concerning her individual health needs and I pray that her condition will continue to improve in all respects!

As I was writing this post, I was reminded again with a sense that this information is not at all positive for many of you.   No one  likes to be the bearer of bad news, but by sharing this information I want to remind you again that you are not alone.   It is very easy to get down about the realities of this illness – I’ve been there!  In my next post I will update you on my prognosis, but at the same time  I also want to share at little more about “the hope that is within me”.  That hope keeps me going despite the hard realities of what can happen when one has a dangerous condition such as portal hypertension.

Until next time,

Clint

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{ 3 comments… read them below or add one }

Audra November 3, 2010 at 9:27 am

Hi Clint,
Thank you for your post. I really appreciate the sharing of information about our common condition. The answers to my questions were pretty well what I expected. Also, I found I learned a few new things from the other bloggers questions. I find this site very comforting when I feel down about PVT. It is very reassuring to know that I am getting similar treatment offered in bigger centres and that I am not alone.

Take Care,
Audra

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John Stonehouse October 17, 2011 at 10:30 pm

17 Oct 2011 My 20-y-o grandson in Campbell River, BC, has been diagnosed with PVT. At present he is in ICU on anti-coags., and probably won’t be moved to a bigger facility (e.g. Victoria)unless there are further problems.
Are there PVT specialists in BC, or is Dr. Tandon’s group the main fall-back?
I hope you have some information for me.

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Clint October 17, 2011 at 11:07 pm

Hi John, I am glad you caught me – I was about to shut down my computer for the night and I happened to see you just sent me a message. As with all people who respond to this blog – I say thank you, but with that I am very sorry to hear about your grandson. As far as specialists are concerned in your province I can’t give you any names, but I have heard since I posted information on Dr.Tandon, that supposedly there is a clinic in Victoria where they are dealing with PVT patients. A regular gastroenterologist should be familiar with most aspects of PVT, however the cases for non-cirrhotic portal hypertension are still relatively rare when you compare this to people who develop the condition from cirrhosis of the liver either by alcohol damage or hepatitis. This is the best I can do for you for now, but you could call Dr.Tandon’s office at the U of A hospital first thing in the morning and see if she or her office staff can refer you to someone out there who can help your grandson. Her office number is 780-492-9844. I am not sure if you will be able to contact her directly, but it’s definitely worth a try.

Do you happen to know what caused your grandson’s clot? I’ll be rooting and praying for him tonight. Keep me posted.

Clint

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