Rivaroxaban (Xarelto) has recently been approved by the FDA and Health Canada for the treatment of Deep Vein Thrombosis (DVT) and according to what I have read it seems to be superior to Warfarin in clot prevention. As and example, the first article below mentions how the drug outperformed Warfarin in preventing strokes. I learned about Rivaroxaban at the appointment I had with my haematologist at the end of June where he prescribed this drug to me in the place of the Fragmin I currently take to combat clots. Needless to say I was very happy to learn that instead of injecting Fragmin like I have done for the past 6 years twice per day, I could now take something orally without the nasty side effects (bruising, bleeding, and scare tissue) of injecting.
Unfortunately the drug has only been approved for short term usage for potential thrombophilia for those who have hip or knee surgery. In my case and possibly that of others I am trying to get the ruling changed (at the very least on a provincial level) for people with rare clotting conditions who could benefit from this drug for long term clottings disorders such as Portal Hypertension.
I received an email update from Tatyana early yesterday concerning Sonya. Tatyana has granted me permission to post that email message below, and for the benefit of people not familiar with Sonya’s story I want to direct you to the link (see below) to the post on my blog that gives you detailed information on her story. If you scroll to the bottom of the page and work your way up from my original post dated 04-14-2011, you will get more of an idea of what this little girl and her family from the Ukraine have been through since the early part of this year. Sonya is in Chicago right now awaiting a rare operation called the Rex Shunt Procedure for Portal Hypertension. In Sonya’s case, no one can undermine the danger she faces regarding this procedure, or what her prognosis will be if doctor’s do not intervene. She has already had six bleeds to date since the early part of this year.
Due to the high cost of travel and medical expenses Sonya and Tatyana are here alone from the Ukraine, but Shelly Hart (yay Shelly) a Mom whose own daughter Aubree had a Rex Shunt 5 year’s ago will be spending the day with Tatyana while Sonya is in surgery on Monday (August 29th). Shelly heads up the parent advisory at Children’s Memorial. Kelly and Amy are 2 other mom’s who have offered moral support to Tatyana. Both Kelly and Amy’s kids are facing the same surgery and their schedules may possibly allow them to see Tatyana within the next week or so .
Thank you for your prayers. The bleed stopped and Sonya is feeling much better now. Her Hb (hemoglobin) is 9, so Dr. Superina says she will receive a blood transfusion during the surgery. Doctors let us go back to Ronald MacDonald house for the weekend where we now are staying.
Yesterday we spoke with Dr. Superina about her CT-scan results, and he feels like the area near the liver doesn’t look so promising for the Rex Shunt, but anyways he is going to try to proceed with one if he can. If after opening the area near her liver and he doesn’t find a vessel good enough to attach a Rex, then he is going to talk to me about the opportunity to do a Mesocaval Shunt instead. I am hoping that he finds a vessel good enough for a Rex Shunt. We could go to Moscow for a Mesocaval Shunt, but we are here for a Rex! But it doesn’t depend on the doctors desire, it is all dependant on Sonya’s anatomy. Dr. Superina gave me a bit of hope by telling that CT-scan doesn’t give a 100% garanty that a vessel exists or doesn’t, but he can only tell for sure when he opens up her liver and has a look.
I feel so afraid for my little one, even though I trust Dr. Superina, as no other doctor in the world. I can’t imagine Sonya continuing to suffer from pain and it makes me sick and crazy. I pray for heavenly comfort for her and me during that rough time for us.
Shelly is coming on Monday to support me, to be my family at that day. I’m so thankful for her!
Please pray for Sonya as they will start the operation at 8:45 am (6;45 am MST)
August 25, 2011
For those of you who have been following the story of little Sonya Danilenko from the Ukraine – I have both good and some ‘disconcerting’ news to share with you this evening. On the good news front, Sonya and her mom arrived in Chicago from the Ukraine last Friday to begin the process for Sonya to have the Rex Shunt procedure which is to be performed by Dr. Riccardo Superina at Childrens Memorial Hospital early next week. On the bad news front, Sonya was taken into the hospital earlier this morning with a bleed. This is Sonya’s sixth bleeding episode since February when they first learned about her Portal Hypertension.
Please keep Sonya in your prayers and I will update you as soon as I hear of anything new. As you might expect Tatyana is very tired from the long journey, and add this latest ordeal to the mix well I am sure you can only imagine how she might feel. Prior to writing this latest post I had started to write a more detailed update a few days ago which included how they got this far in the journey but I will leave that for another time as this obviously takes precedence!
In the meantime if you are just learning about this little girl, you can view the prior posts by clicking the highlighted words within this sentence. Thanks for caring and praying!
As per Tatyana I wanted to update those of you following this story on little Sonya.
On June 20th, Sonya was taken to a children’s hospital in Dnepropetrovsk with another life threatening bleed from the varices in her esophogas. A few days later Tatyana updated me again to say that Sonya was still critical and of course very weak. Lastly on the 29th I received much better news that Sonya was better, still very weak, but that her Hb was low.
On a more positive note overall is that they have most of the funds in place now to make the long journey to the US for treatment, but will need to recover enough to survive the long trip. Tatyana is to apply for visa this week, and hopefully will receive a visa without any problems. She is hoping to be in Chicago at the clinic in the middle of July?
Tatyana has asked for continued prayer for Sonya’s condition, and for the visa to be approved. I’ll keep you posted … Clint
NEW UPDATE 06-13-11 (Latest Update on Sonya)
It’s been a little over a month since the last update, and still we play the waiting game for Sonya. They have been back home in the Ukraine for a few week’s now, and have only recently received word from Children’s Memorial Hospital in Chicago as to what to expect regarding a possible Rex Shunt for Sonya. Dr. Superina had reviewed the results from the tests in Germany, and he is of the strong opinion that a Rex Shunt is still the best option for Sonya – contrary to what doctors in Germany told Tatyana. Doctor’s in Germany recommended an arterial embolization on Sonya, of which both Tatyana and apparently Dr. Superina did not favor. (Up to this point I was not familiar with this procedure and after a thorough search I was able to locate the link above which I thought explains the procedure in the easiest terms).
Not only were the expectations regarding the procedure outlined in the letter, but the costs were also highlighted. A recommendation was made by Dr. Superina that Tatyana consider applying for a 5 year visa to the US, as Sonya would need subsequent follow-up visits for awhile after an operation of this kind. As you can imagine the costs for a procedure of this nature is very high, and considering the costs to travel from the Ukraine to the US it adds even further depth to those costs. Despite this Tatyana is not deterred in her mission to get the help she needs for little Sonya.
Financially this is a HUGE undertaking and after learning of the costs via Tatyana last week, my heart sank for them. My natural response to any huge hurdle in life is to think the worst, but after mulling this over in my mind, I return to the faith I have in God who I believe is much bigger than all of this. To that end, I continue to uphold this little girl and her family in my prayers. For those of you who are also praying and thinking of them, I thank you for your faithfulness. Lastly I want to personally thank those who have offered to help Tatyana in practical ways, if she ever was to go to the US with Sonya for a operation of this sort.
I’ll keep you updated on any new developments. Thanks to all of you for caring!
Faith is like radar that sees through the fog-the reality of things at a distance that the human eye cannot see.
– Corrie Ten Boom (Dutch Christian Holocaust Survivor)
Update on Sonya 05-09-11
Earlier today I received a message from Tatyana (Little Sonya’s Mom) regarding the latest on her little girls condition. Due to the generosity of a donor in the Ukraine, Tatyana was able to take Sonya to Germany this past April 27th for testing and possible treatment for her Portal Vein Thrombosis.
Here are the details in Tatyana’s own words …
“As you know, we arrived at the KUNO clinic (part of the University Hospital in Regensberg Germany) on April, 27th. I was so happy and my heart was full of hope. The investigations started with the ultrasound and Dr.Knoppke said that it looks like the left lobe of liver has blood perfusion, so it might be the left portal vein that is unclotted. I was so happy to hear that!
On Tuesday she had MRI and also a gastroscopy. The doctors said that her varices look much better than a month ago and there is no danger of bleeding right now. The MRI was not really so informative so they needed to do CT with contrasting. The CT scan was done last Friday. Sonya had to be intubated twice, and under 3-hours general aesthesia, she received twice the high dose of X-ray radiation. After this entire ordeal doctor’s are still not sure how to proceed! Now they want to do an angiography, which is invasive. In order to do an angiogram doctors will open her femoral artery and use a catheter to proceed into the mesenteric artery. When in the artery they will release contrast to trace a path of where the blood is going. One cannot stress enough the danger involved in this type of procedure!
I didn’t have the opportunity to talk to the surgeon personally, but our doctor said that he does not think that Rex-shunt is possible for my daughter, because she has only collateral vessels. I feel so disappointed now, I really don’t know what to do?
I was reading your blog and almost made a decision to look for other surgeon who would say that the Rex-shunt IS POSSIBLE. Only the Rex-shunt is healing operation, other types of porto-systemic anatomises will only reduce the pressure in the portal system which causes bleedings. I do not only want her life to be saved, but I also want to save the quality of her future life.
So now I want to have a discussion regarding this problem with Prof. Shlitt, and at that point I will have to make a decision to either sign or not sign an agreement to have the angiography. Also I want to get a second opinion as well. I have decided to make a short summary of her case and all the recent investigations and send that information to doctors in USA who perform the Rex-shunt operation in children. If even one of them will say ”yes, I’ll do that”, then we will come back home and do everything possible and impossible to receive a new visa, and to collect the needed funds. I’m ready to go to the happy end of the story, to overcome all of the trials on that way. I want to see Sophia happy and healthy, she is worthy of that.
Please continue to pray for my girl and for the correct decision. The best would be to have the Rex-shunt procedure performed over here, but if the surgeon says ”no’, I’ll have to find another place in the world and another surgeon … I pray that would be Dr. Superina himself
Original Post 04-14-11
It’s with a sense of urgency today that I bring you the story of a little girl in Zaporozhye, Ukraine by the name of Sonya Danilenko (see below). Sonya is only 14 month’s old and has been diagnosed with Portal Vein Thrombosis (PVT) and a heart defect called pulmonary stenosis. Her Mom Tatyana located this blog last week and was seeking to contact a doctor outside of the Ukraine who had previously performed the Rex Shunt procedure.
Sonya was adopted in the Ukraine just over 4 months ago by the Danilenko family (see below), and oblivious to them at time of her adoption this condition revealed itself only a few months after (February) when she had serious bleed (see: esophogeal varices). Subsequently she has had 4 bleeds to date losing over half of her blood volume and she almost lost her life on March 31st. Added to the urgency of the situation, she has obstructive bronchitis with a breathing insufficiency. If she coughs it could open up another varice and her condition will decline even further.
Tatyana is an emergency doctor herself, and her understanding of Sonya’s condition is excellent. Unfortunately no one in the Ukraine is able to perform the Rex Shunt procedure, however Tatyana was able to locate a doctor at the University of Regensburg, Germany by the name of Dr. Birgit Knoppke who may be able help her. Dr. Knoppke says that this kind of shunt is of course preferable, but can only be performed if the left branch of the portal vien in the left lobe of liver is not clotted. If they find the thrombosis in that left branch, as well as in the extra-hepatic part of the portal vien, that kind of shunt is impossible to perform and they will then consider a meso-caval or another kind of anastomosis. If those options are not feasible, she will be faced to endure encephalopathy with behavioral or mental problems with heart insufficiency and other future problems.
So as you can see Sonya is a little girl who is very ill. Tatyana told me Sonya has to be stable before she is able to make the trip to Germany. As per an email Tatyana sent yesterday she relayed the following, “My privilege in this situation is first of all my faith in God, then a MD degree in medicine with the understanding of the problem and then no language barrier, I can discuss all of the details of treatment with doctor’s there”. Fortunately they have raised the necessary funds through the gifts of some generous donors, so that is one thing less to be concerned about. They are currently in the process of getting their passports and visas to make ready the trip.
The Danilenko family has 8 children in total, 3 are their own, and 5 are adopted including little Sonya. I promised Tatyana that I would pray for Sonya, and their family at this time. I told her I would also ask others to “stand in the gap” for them by praying for Sonya at this critical time. Although I have never met Tatyana in person, I feel I know them by the few messages she has relayed. They have a tremendous heart for children. In Tatyana’s own words she says, “I believe in the Lord Jesus Christ and serve Him by adopting orphans into family, loving them as my own children and telling them about the love of a Father”.
Will you also commit to pray for this little girl and her family? Specifically pray that Sonya will be stable enough to make the trip, and Dr. Knoppke in Germany will be able to intervene to save Sonya’s life. Pray for this family as they deal with this situation and that all the “hurdles” that may come their way before they leave will be taken away. I know they will be encouraged by your efforts in this regard. Their faith in the Lord Jesus Christ is sustaining them for most part, however one can’t deny the sense of concern they no doubt have at this time for this precious little gift from God.
Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. John 14:27
The words, “there is nothing further we can do for you” didn’t really hit me until shortly after my appointment with the specialist on the drive home that day. I had hoped for some more positive news, but obviously it was not meant to be.
This past October (2010) I had met with my gastroenterologist after her one year study leave regarding portal hypertension. Due to the high level of anticoagulants I am currently on to prevent further clotting, she and other specialists agreed that in order to do any kind of procedure my life would be compromised greatly. It is important to note that just over 2 year’s ago, I was being considered for a rare cluster transplant which would have entailed the transplantation of my liver, stomach, pancreas, and the large and small intestine. Doctors were also considering the placement of a surgical stint (TIPPS) to relieve the pressure. At that time a panel of 5 specialists – 3 liver specialists, my gastroenterologist, and my haematologist had reveiwed my case.
Beyond the fact that nothing further can be done for me, one small measure would be to titrate me another 20 mg on my Nadolol to keep the pressure down. My blood pressure seems to be relatively stable right now, so my gastroenterologist was hesitant to change the dosage in fear that it would make me even more tired than I get now. In the event of a bleed, of course they would have to use evasive measures (banding) to stop the bleeding, but with the high dosage of anti-coagulants (Fragmin 12,500 IU injections/twice per day) that I am currently on, the fear is I would likely continue to bleed from the varices due to ulceration after the bands had “sloughed” off.
The picture on the left shows an actual diagram I showed my doctor on that day from an article which was posted in The New England Journal of Medicine. The black pen marks represent the extensive clotting to the mesenteric, portal, and splenic veins as noted by my gastroenterologist on that day.
As mentioned above my doctor (Dr.Puneeta Tandon) had been on a study leave this past year to the University of Barcelona in Spain, and she also spent time at Yale School of Medicine in New Haven, Connecticut. She specifically received training in portal hypertension under the mentor-ship of Dr. Guadalupe Garcia-Tsao from Yale. Recalling what she said really solidified what I had been told a few year’s ago and it brought me back to the reality that my life could end abruptly… I am a ticking time bomb! Despite knowing that – I’ve lived 8 year’s beyond my original diagnosis, and that truly is a gift! It’s also important to note that since my diagnosis I have endured countless medical tests, several iron infusions (4 per year), over 4,380 needles (Fragmin 2/day for the last 6 years), almost daily intestinal pain, a serious bleed (2004), not to mention clots pulmonary embolism to both my lungs in early February 2005.
While mulling over the verdict I was given on the drive home, I recalled a text from the Bible which states, “Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Saviour and my God”. The passage is found in Psalm 42:5. At that point I just needed to trust, and quite simply put “my hope in God” for whatever may come my way regarding the future! Until this point in my blog, I had really never expounded about the overriding peace I have concerning my condition, but felt prompted to tell you more in hopes that you may also be encouraged? First of all I need to tell you that only on very rare occasions I do get fearful when I think of the real possibility of a fatal bleed. If a bleed were to happen, I get concerned about where exactly I will be, who will be there when it happens, will I make it to the hospital in time, or will I go into shock like many do when faced with the dire consequences? Thankfully that overriding peace is what the Bible states as, “the peace of God that transends all understanding” (Philippians 4:7). The peace that carries me through stems from a personal relationship I have with Christ, God’s son who ultimately paid the ultimate sacrifice for my sin, and has promised me eternal life where I will be free from pain and suffering in Heaven when I die (John 14:1-4). I know no one really wants to talk about death or dying, but in actuality one’s passing does brings healing and when there is no hope for a cure, then at least the suffering is past.
Since my diagnosis almost 9 year’s ago, I believe prayer has been the key element for the under girding force that has enabled to stay strong, and optimistic despite the obstacles I face. Along with personal prayer, I am extremely grateful to countless others who I know have supported me in this regard. I do believe God can heal, but in my case He has chosen otherwise for reasons I do not understand except to say that I know there is a purpose for everything. In the meantime – I simply carry on and am grateful for life and the very breath I breathe each day.
Corrie Ten Boom, the Dutch Christian Holocaust survivor who helped Jews escape the Nazi’s during World War II penned the following, “Faith sees the invisible, believes the unbelievable, and receives the impossible.” Her words ring true for me today. Although God is invisible to the naked eye, we can only see Him through the eyes of faith (2 Corinthians 4:18).
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 TheNew 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.
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 donate you can contact Jen by email: firstname.lastname@example.org 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.email@example.comA special thank you to “Audra” for forwarding this news clip to me yesterday!
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.
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?
Thanks to Greg from Minnesota for forwarding the following 2 articles concerning Acute Hepatic Encephalopathy and some possible new treatment options.
The following article represents data from 2 studies presented by the UCL Liver Failure Group to the American Association for Liver Disease (AASLD) regarding OCR-002 (L-ornithine phenylacetate) at a meeting held in Boston in November of 2009. Ocera Therapeutics, Inc. of San Diego, California holds the licensed exclusive, worldwide rights for the development and commercialisation of OCR-002. OCR-002 has the potential to reduce ammonia, down-regulate inflammation, lower oxidative stress and reduce portal hypertension in a preclinical model of cirrhosis. UCLB (UCL Liver Failure Group Present Two Studies at the Ame
This article presents data also from Ocera Therapeutics on AST-120 in Patients With Hepatic Encephalopathy At The European Association For The Study Of Liver Disease held in April of 2009.
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.
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!