Category Archives: portal hypertension

Portal Hypertension … A Few More Answers

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

Children with Portal Vein Thrombosis. A Shunt for Jakob Temple… Will You Help?

Tonight I bring to your attention a story of a little British Columbian boy by the name of Jakob Temple.  Jakob is a 4 year old boy with Portal Vein Thrombosis (PVT).    Jakob has recently been approved for the Rex Shunt Procedure a relatively new procedure for PVT that has been successfully performed on just over 140 children in the world to date.  Jakob is scheduled to have the operation in January of 2011 and it will be performed by Dr. Riccardo Superina at Children’s Memorial Hospital in Chicago, Illinois.

Some friends of the Temple family in British Columbia are organizing a fund-raiser evening for them on November 12th to raise funds  for flights and accommodations while Jakob has the operation.  They will need to stay in Chicago for approximately a month for the operation and subsequent follow-ups at Children’s Memorial Hospital for the next few years.

I share this story in hopes that you or someone you may know may be able to help Jakob’s family?  I had the privilege to speak in person with Jakob’s Mom Jen earlier today, and she expressed her gratitude in advance for anything I/we could do to help in this situation.  Jen assured me that any additional donations received over the amount required will be directed to other families whose children require this life saving procedure.  Thanks for your consideration!

To view the news clip click here:  http://www.ctvbc.ctv.ca/servlet/an/local/CTVNews/20101024/bc_preschooler_surgery_101024/20101024?hub=BritishColumbiaHome

To donate you can contact Jen by email:  jen@trademark.ca or if you live in the lower Mainland of British Columbia you may wish to attend the auction or donate an item.  You may also contact Jacqueline Robertson at 604-910-4681 or you can email her at Jacqueline.robertson@live.kwantlen.netA special thank you to “Audra”  for forwarding this news clip to me yesterday!

Until next time,

Clint

Needed: New Treatment Options for Portal Vein Thrombosis (PVT)

Balloon-catherter While at my family doctor’s office a few days ago, we were discussing the forthcoming appointment I have next month with my gastroenterologist.  My gastroenterologist, Dr. Puneeta Tandon has just returned to the University of Alberta Hospital here in Edmonton, after a year of specialized study in the area of Portal Hypertension.  Dr. Tandon studied  in Barcelona Spain for the first 6 months, and for the remainder of that year  worked with  Dr. Guadalupe Garcia-Tsao at Yale University in New Haven,  Connecticut.  Dr. Tandon heads up western Canada’s only Portal Hypertension clinic.  I mentioned to my family doctor that I had many questions for Dr. Tandon, and he himself wanted me to ask her if doctor’s had ever considered performing a balloon angioplasty to remove a clot to the portal vein. A great question for sure!   My doctor reminded me of the recent treatment on MS patients called the Liberation Treatment.

Rather than trying to explain the treatment I have copied a link below  from a CTV program called W5 which covers the whole topic in greater detail.  Along with other questions I personally have for Dr. Tandon, I welcome any questions you may have regarding  portal hypertension.  My appointment is in mid-October (2010) so if you are wondering about any new possible treatment options or require a better understanding of the condition send me a message and I will gladly add it to my list and post the answers after the fact.

Until next time,

Clint

Click here to view the CTV program:  http://www.ctv.ca/CTVNews/WFive/20091120/W5_liberation_091121/

Pain … a perpetual reminder

Well it’s been several week’s now since I first started using Peppermint Oil for pain control. Unfortunately I have nothing conclusive to report regarding the use of this natural means. Vascular pain as discussed in a prior  post is  extremely hard to treat as I have been told and sadly I continue to experience pain on a daily basis.

In attempts to take the edge off the pain,  I still use Codeine, and Tylenol albeit sparingly.  Added to the meds I use heat in the form of a warm bath or hot water bottle, and yes I still use peppermint oil in lukewarm water with a teaspoon of unpasteurized honey.  More recently my doctor has prescribed Toradol, however I  experienced bouts of dizziness with no apparent  pain relief.   To clarify, when I say pain control, even the Codeine or Tylenol will only just take the edge off.  So I just tarry on,  and bear the pain when it comes.  Fortunately that pain usually will subside over time, and the episodes normally  last a few hours or more.  There are days though where my whole day is taken up fighting pain.  Rest, heat,  meds, and yes a warm cup of peppermint tea are the order of the day when pain rears it’s ugly head!

Not really  sure what triggers the pain but am only left with the grim fact that all the arteries within my intestinal tract are engorged with blood due to portal pressure.  There are certain foods I know will irritate my system, and I refrain from eating them.  Can only surmise at this point that the pain may be triggered by stress?

Peppermint Oil … a remedy for bowel pain?

Recently, I’ve been experimenting with the health benefits of Peppermint Oil for treating Irritable Bowel Syndrome (IBS) and related digestive problems.  Due to almost daily intestinal pain originating from the clots, I thought it would be worth a try to see if I could curtail thedaily pain and discomfort experienced through natural means.

The health benefits of peppermint oil include its ability to not only treat digestive problems, bowel spasms and pain, but is apparently good for  respiratory problems, headache, nausea, and fever.  Peppermint is a cross between spearmint and water mint and is known as one of the oldest medicines in the world.  Most people know about peppermint as a flavoring agent, and it is one of the most palatable oils on the market today.  Peppermint oil contains minerals such as iron, magnesium, calcium, folate, potassium, copper, manganese, and magnesium.  Also contains vitamin A and vitamin C, plus omega-3 fatty acids.

I have only known one other person who takes Oil of Peppermint in capsule form for IBS, and he claims it has improved his quality of life significantly.  Although his cause was not associated with Portal Hypertension, like myself he had onslaughts of irregularity at the most inconvenient times.  After talking with him I had looked into purchasing some Peppermint Oil in capsule form several month’s ago, but due to prior financial commitments which were health related at the time, I forfeited the option as the cost was more than we could bear.

However, a few weeks ago I was at a local farmer’s market in my area, and there was a vendor who was selling all sorts of essential aromatherapy oils used for the treatment of a variety of  ailments, and I became convinced that I needed to investigate the option again.  As it turns out I was able to purchase from this gentleman the actual Oil in it’s most concentrated form for a relatively low cost.

Peppermint oil has a muscle relaxing property which has been found to ease irritable bowel syndrome. Validation for this theory has been completed through scientific research, but the exact mechanism is not known.  Further benefits of peppermint oil are also being studied for its antispasmodic properties.    The presence of calcium antagonism in peppermint oil is believed to be the ingredient within that helps to relieve pain.   Because peppermint oil is cooling in nature it can help to reduce fever.  The list of benefits is large, but for the specifics of portal hypertension and it’s related side effects I have only mentioned what is pertinent to the condition.

On a daily basis I add 1 drop of peppermint oil and 1 teaspoon of unpasteurized honey to a lukewarm glass of water.  I have been doing this for a little over a week now, and the pain seems to have lessened to some degree.  The verdict is still 0ut though as to how long this will help me because of the root cause of my issues?  If you have experienced success with Peppermint Oil or any other herbal or natural remedy, I would love to hear about it.

Until next time …

Portal Vein Thrombosis … One Woman’s Journey with Pain

Pain in it’s various forms, unfortunately seems to be a common trait associated with Portal Vein Thrombosis (PVT).  Over the past several months I have been in dialogue with others who have shared the specifics of their pain.   Claire from Tasmania, Australia is one such lady who has endured much in her life due to pain associated with PVT.

Here is Claire’s story…

“I have learned much over the years about pain. My pain is based on the issue of when my portal vein became blocked.  Because of that blockage,  my body produced other veins around my spleen to take over the role of my portal vein ensuring that blood circulated to the various organs (especially and more specifically my spleen). Once the Portal vein burst and I hemorrhaged, it was at that point that my condition was diagnosed.  My portal vein issue was slowly dealt with but the veins surrounding my spleen didn’t dissipate so in the time it took for the medical profession to figure out that I had PVT, these other veins became thromboses (engorged) as well.  Unfortunately the veins will never go away.

My pain is due to an enlarged spleen and the fact that the veins surrounding the spleen are now very enlarged.  At one point my spleen was reported at a size of 27 cm, with a normal size being only 10-12 cm.  Due to constriction and enlargement of the spleen, I experience severe abdominal pain in the lower left hand side of the abdomen. Initially I was self medicating with alcohol combined with over the counter prescription medication until it finally took hold of me mentally.  At that point I finally found myself in the office of a “pain management specialist” who, in 2005, started addressing the pain issues by trialing me on morphine, then oxycotin (the pain relief for cancer patients), morphine again, then methadone along with different enhancing meds: gabapantin, encap/clonodine etc.   In May of 2008, he requested that I go into hospital and try 10 days of Ketamine (street name “special K”) however on day 6; I flipped out on the side effects and demanded to be discharged. I then tried to cope more on my own with a lot less pain meds (only methadone 5o mg dosage),  but my specialist wanted me to consider another attempt of Ketamine infusion. So May last year (2009), I was admitted and started the infusion. Unfortunately the medication DID finally give me a pain-free day (Ketamine seems to be the only medication that provides the pain free relief).   After only 2 days of treatment I asked to be discharged again because I again started to freak out on the side effects which unfortunately were enhanced due to 2 traumatic events of rape and sexual abuse in my past. So Ketamine has been ruled out as an option for any consideration until I am financially able to get the infusion in the safety of a single room.  After I discharged myself, I went to a clinical psychologist who has been nothing short of amazing! Also went back to my specialist and asked to be provided with a more subtle pain relief that would not affect my job or daily tasks so he prescribed fentanyl patches (50 micrograms).  The patches I take every three days to work in conjunction with the therapist treatments I am receiving. Recently the pain has increased so the fentanyl patches are being trialed at even a higher dose so who knows what will happen next as the patches don’t seem to be working as much as I need them to?  My only wish is to be able to work hard and live a normal life as possible.   Anyway, I have to live within my limits. Pain is debilitating for anyone on any level. Pain is pain and is individual to ones being.

As the result of my declining health and ever present pain,  I have suffered a great deal of loss in my personal life.    First I lost my daughter to her father, and secondly I lost the option of naturally conceiving children due to my condition”.

Claire went on to say in her note to me that  along with working at a part time job, she is currently studying at University for a law degree.   She also told me that University is keeping her sane, and it has been a good diversion from her feeling sorry for herself.  Also she is newly married, and she sees her daughter a lot so that is another reason for her optimism.  Ultimately Claire’s desire is that someone other than sufferers themselves, would care enough to fix the horrible condition, or at the very least, the chronic debilitating pain which accompanies portal hypertension.  She requested her story be told, not the sake of pity, but that others may be educated.   Claire understands…she is a survivor…and is a real inspiration to me.  Keep doing what you are doing Claire … I am cheering for you!

Until next time,

Clint

A day in the life of a PH survivor … begins.

So … here I am … finally at the place where I just need to share with you on a more personal level as opposed to just building my site with information pertinent to Portal Hypertension (PH).  So with a sense of expectation and a wee bit of trepidation I now begin the voyage to just journal my thoughts in light of my underlying health issues.

To begin I must say that the greatest challenge I face on almost a daily basis is the fact I have to endure severe pain in the lower part of my bowel.  The pain is caused by constriction of the arteries in the bowel due to the clots, and because the pain is vascular in nature, it is very hard to control at times.  With the pain, I sometimes get discouraged when I can’t seem to bring it under control with pain medications such as Codeine or the occasional Tylenol.

The pain keeps me up on many a night,  so I get extremely tired at times,  but I am grateful I can at least rest during the day if need be.  Sometimes the only other reprieve from pain is to apply heat in the form of a hot water bottle, heating pad, or sometimes to just soak in a warm bath helps to lessen the pain.

As mentioned above, coupled with the pain I sometimes experience occasional bouts of discouragement.  It is those times, which thankfully are rare,  I have to stop and catch myself and think that things could always be worse.  That being said,  my heart sincerely goes out to any of you who have gone through some of the more serious side effects of PH and the discouragement that may accompany it.

For the good days, which thankfully are still prevalent in my case, I take refuge in the fact that God has given me peace and an optimism that carries me through.  As for you … I hope and yes pray that you too will find the answer’s you need to combat the challenges you face.  May I again remind you that you are not alone?

God willing … until next time,Clint