Thanks for your comments and inquiry. Always sorry to learn of new people with our common condition, but happy you have found this site and to say that you are not alone in the battle! Here is a link from my site where you can hopefully find a doctor to at least guide you to where you might be able to go for help: http://www.portal-hypertension.com/2011/03/17/rex-shunt-procedure-specialist-list/

On the list is the name of a doctor in New York by the name of Dr. Jean Emond who may be able to direct you to a specialist in your area, or you may also want to contact Dr. Superina at Children’s Memorial Hospital in Chicago. Dr. Superina does preview adult cases, but he is by far the most renowned specialist for his work with children regarding the Rex Shunt procedure. Not to discourage you, but the Rex Shunt is works best on Children under the age of 5 with limited atrophy of the portal vein. There is another procedure that I have not discussed on my site yet which is called the Sugiera Procedure which is also rare, but if you look for anything on the net it is very technical in nature. There is a 12 year old boy in Chicago right now that Dr. Superina is considering for this procedure as the Rex Shunt he had failed in his case, so we are waiting to hear what the next step may be for him.

Why did you have your spleen removed in the first place – I am just curious? How did get PVT – if you also don’t mind me asking? Are not your doctor’s doing anything for the severe pain you are experiencing? I know this sounds relatively simple, and until you get more concrete answers (I’ll pray), but have you tried taking oil of peppermint for your stomach pain? It is not the be all to end all for pain relief, but maybe it will help at least a little? You should be able to pick up some Oil of Peppermint in your local health store, and I would suggest you put a few drops of oil in a cup of warm water and sip it down – sort of like a tea. It is very strong so remember to keep your eyes away from the steam. I never tell people to take anything except for what a doctor may prescribe, but something like this may curb some of your pain? Ginger can also be good for nausea, or you may want to try gravol – keeping in mind that it may make you very tired during the day. These are just a few over the counter type remedies – I certainly hope you get relief soon!

Worldwide the standard treatment protocol for portal hypertension seems to be the use of Propanol or Nadolol (beta blockers) to lower pressure to prevent bleeding from any varices that form due to the clot. You may not be at that stage yet, but the use of that med plus a blood thinner is what usually is prescribed. The other thing I wanted to ask is if you are on a med that eliminates stomach acid – this may also help with your nausea and maybe your pain? I am on a medication called Dicetel for that, and there are other drugs I am on which play into the whole mix of treating this condition.

Also … there is a Facebook site that was set up by a gal by a fellow Canuck who lives out in Vancouver. I don’t have the address for it, but it you have a FB account you can view the site by going to Portal Vein Thrombosis and Portal Hypertension in Children and Adults. There is some excellent dialogue on that site and you will even find some of my posts.

All the best in your journey (you are not alone)!

thanks again for sharing our story and i will pray for everyone that they find a cure that works for everyone suffering from PVT. I will also continue to raise support and awareness for people living with PVT!

Thank you

Jen Temple

Secondly, I did see my doctor last Tuesday, and I am still working on a post for my site so that you and others can view her response to the questions that I asked. I was working on that article into the wee hours of the morning today, so as I result I am a little tired this evening. What she had to say about my particular case was not good at all, and as far as the answers to the questions – they were sort of what I had expected. I will try to post that article as soon as I tweak it a bit.

Take care and thanks again!

Clint, I hope your visit with Dr. Tandon was productive. I am sure you will post the highlights when you have digested the material. I have run into a bit of a snag–painful hemorrhoids, due to the re-routing of blood due to the clot. I was warned about this possibility. I have an appointment with a surgeon tomorrow to schedule banding. Meanwhile, I take my doughnut pillow with me everywhere and am following home treatment instructions. Otherwise, I am feeling good. How are you doing? The very best to you and look forward to your posts. Cheers, Audra

I, too, tire more easily. My stamina and energy levels are not what they used to be. In January 2010, my hemoglobin was extremely low (72) and I was diagnosed with extreme anemia. Like you, I was offered a blood transfusion on the spot. I opted for iron pills. Further blood tests confirmed the anemia was diet related and not due to internal bleeding which was a relief. Three months of mega iron supplements have really helped and my iron levels are almost where they should be. I have been told that fatigue also can be a side effect of some of my medications, eg. warfarin.

I have found your blog very helpful and would like to thank you for your medication and prevention page. I picked up a great tip on how to deal with the frequent “bathroom trips” that PVT causes. This summer my husband and I took our first major trip since all this started (Toronto, Montreal, Ottawa). I was very apprehensive about taking long flights and car trips when a bathroom would not be readily available. I took one dose of Imodium on long travelling days and it worked like a charm. Anyway, I’m looking forward to your post after your appointment in mid-October. I find it reassuring to know that we have an expert on PVT reasonably close to home.
Regards,
Audra

I will reiterate your questions to my gastroenterologist as requested to see if she has any new insights, but first allow me to tell you what I do know for sure. From what I have been told the typical protocol for those of us with PVT/esophogeal varices is to be prescribed a beta blocker (Nadolol) to keep the heart rate down, but given this I have never been given the specifics as to what is a safe heart rate for exercising. There could be some variance of heart rate depending on dose of the Nadolol, and possibly other contributing factors such as medications or age? When first prescribed Nadolol I was given 100 mg, and since that I have been titrated to 140mg as I tolerated that. Not sure if the dosage will be raised when I see my gastroenterologist next month? When being considered for a cluster transplant 2 years ago, a nurse on the team, and another doctor told me I was not to lift anything over 10 lbs. It would seem that any strain on the varices to the contrary is not good, and this may all be dependent on the severity of the varices as they are graded on a scale of 1 to 3 here in Canada. In the US they apparently use a 4 point grade system? If a scope reveals a red spot on any of the varices this indicates a high likelihood for bleeding. I’m not trying to scare you with this, but the last time I was scoped 4 years ago I was told that I had several columns of grade 3 varices, however I am still here! Now I don’t do any cardiovascular workouts or do I run, but I stay active my moving around with light housekeeping duties, or walking for short distances. I can get winded if I go at anything to hard, and I am out of shape in that regard, but I do not push myself so as to raise my heart rate too high. So all being said, I will ask my specialist about this and she what she says. Secondly, I recently had another person ask me if varices could continue to develop, and the answer is unfortunately – yes. Now that being said, a fellow from the US I met through my blog, had a severe bleed back in December of last year, and he was recently scoped and they only found one column of varices in his esophogas. The doctor told him they would leave it alone for now, but his health seems to be stable so that is good! Incidentally this same fellow has had PVT all of his life (I think he is around 47 years old now). You can expect the answers to your questions sometime after my appointment on October 18th.

Steenson is not a common name at all and we are not related to a Trish Steenson. It would be neat to meet her though and swap stories, maybe there would be some similarities? The name was originally Scandinavian, but we have relatives in Northern Ireland as that is where my grandfather came from in the early 1900’s.

You asked how I was doing … well not too bad, but I have been very tired lately. I am scheduled for an iron infusion at the hospital tomorrow. My iron gets low due to continued blood loss from the stomach, so my haematologist ordered iron infusions 5 years ago in order to keep my levels high. I was unable to tolerate the iron pills, and there is a risk when you take thinners, so this is the alternative but fortunately I only have to do this every 4 months. If the subject of iron infusions is common amongst fellow sufferers, I may post an article?

Well – I hope I have set given you at least a little more insight?
Take care,
Clint

I have some very new information on a recent symposism that was held for experts on PVT, and I hope to share that on this blog soon. I need to read through the information as it it quite technical in nature, and possibly summarize it for the highlights. The conference attendees are renowned scientists in the field of portal hypertension research. I am quite postive your own gastroentrologist would be aware of the doctor’s involved?

If it is any consulation, I will tell you that most of the people I have been in contact with who also have esophogeal varices are being treated relatively the same way, and they have survived even longer than myself! The standard treatment protocol seems to be Nadolol (to keep the heart rate low) and anti-coagulants to keep from futher clotting.

Just before I go (it’s 1:35 am here) I want to say that I will be praying for you and that you are definitely are not alone!

Take care,

Clint