Thanks to a fellow sufferer, friend, and subscriber to this blog I am posting a link for a study that was completed in 2006 on the neuropsychological affects on people with non-cirrhotic portal vein thrombosis. Unfortunately my friend was diagnosed with PVT in his late teens and has had 2 major esophageal bleeds, however he like myself has survived many years since his original diagnosis. He also is in his 50’s. His condition is intensified by the fact he is now dealing with encephalopathy as his blood flow is bypassing his liver and causing ammonia levels to rise and in turn cause neuropsychological issues. For the most part he is managing fairly well, with evenings being the worst part of the day for him.
The article is short (click link below), and technical from my point of view, but nonetheless may be helpful for the small percentage of us with non-cirrhotic portal vein thrombosis. On a side note, I am fully aware that much of what I write and post on my blog can be overwhelming and depressing, however I want to encourage you that although the medical strides seem minute at best, I have come to realize that intervention, whether it be with medications or surgery (the greater factor being medications), seems to be prolonging the lives of many I am in touch with concerning this condition. Remember … your questions, comments, or stories regarding your personal journey with portal hypertension (PVT), or that of your loved ones are always welcome.
One person is diagnosed with a blood clot every minute. One person dies from a blood clot every six minutes. (Clot Connect).
If you haven’t yet heard of Clot Connectan online resource for the general condition of clotting, I am pleased to introduce this to you. Clot Connect is a resource for both patients and healthcare professionals offering up to date information on clotting and support to those suffering with the condition.
I am grateful for permission granted to me to refer to their site, and in turn for them to point back at mine for specific information on portal vein thrombosis and the ongoing condition of portal hypertension.
Clot Connect further defined (as per Clot Connect background)
Clot Connect®(clotconnect.org) is an information and outreach project of the University of North Carolina at Chapel Hill in the Hemophilia and Thrombosis Center. Clot Connect’s mission is to increase knowledge of blood clots, clotting disorders and anticoagulation by providing education and support resources for patients and health care professionals.
Clot Connect emerged in September 2010 from the observation that blood clot survivors face many unique challenges including risks associated with anticoagulant use (blood thinners), the development of post-thrombotic disorders and increased risks for future clots. Blood clot survivors and their families need information and support to manage the effects of a blood clot and to prevent future clots. It was also recognized that health care professionals need easier access to the latest treatment options and scientific research related to the diagnosis, care and management of patients with blood clots and clotting disorders. Additionally, it was known that although blood clots area a common health condition, there exists low public awareness.
Clot Connect initiatives are targeted at:
Persons who have experienced a blood clot
Persons at high risk for developing a blood clot
Healthcare professionals who treat patient with or at risk for blood clots
It’s been a few days since my last update, and I wanted to let you all know that I am now at home “safe and sound” after my week long ordeal at the hospital. I arrived home here early Friday evening after being directly released from ICU at the University Hospital here in Edmonton.
In my last post I spoke about being treated for the latest clot through a method called TPA which is short for Tissue plasminogen activator. The treatment is primarily used for stroke or heart patients in the very early stages (up to 4.5 hours) of discovery, and it is often effective, however in my case my hematologist did not even know of another person in the world who had the treatment for the type of clot I developed called mesenteric venous thrombosis. My hematologist had recommended this procedure to an entire team of specialists at the time, because it was the only thing he thought they could do that would be less evasive then actually cutting me open! When I asked him if this had ever been used before for this type of thing, he only said that a young fellow they had admitted a few weeks prior had the procedure done for a clot that had developed on the entrance to his kidneys and that it was successful. Initially my doctor had wanted a radiologist to insert a catheter directly over the clot location and target the actual clot from there, but that was ruled out as it again entailed opening me up and the risks of course are enormous.
At this point we are not sure if the TPA did what is was supposed to do, because it was administered almost 14 days since the onset of the pain I started having. I am still dealing with some pain, but I will not know for sure if the treatment has worked until I do follow-up with my hematologist in a few weeks time, and of course if the pain has totally diminished. At the time I was having pain it was thought that I was dealing with that from the thickening of my gall bladder due to the congestion of arteries from the existing clots, but that was not to be. This latest clot caused swelling and distention of the bowel, and I was in considerable pain which increased in intensity since its onset a few weeks earlier. After being admitted to the hospital early last Sunday morning, a CT scan revealed that a new clot had formed just below an existing clot in the mesenteric vein. Click here for a diagram (black felt marks shows the existing clots I now have).
The danger for anyone having a TPA is that they could develop a clot in the brain, or bleeding, but in my case severe bleeding can occur as TPA is considered a clot buster with strong anti-coagulant properties. Since my original diagnosis 10 years ago, I have always have been at risk to bleed, but more so now because I have esophogeal varices.
Thanks to many of you who prayed for me while I had the TPA, otherwise who knows what could have happened? For those who sent emails, posted on my Facebook page, called me on the phone, stopped in to see me personally, brought food to the house, prayed diligently for me, or encouraged me through their words or hugs – I am feel so humbled by all your kindness! Knowing that so many people from around the world were in the background cheering me on, made me feel special, and I cannot begin to tell you what that means to me. You are a loved bunch! Bless you for your faithfulness. Not only was I blessed by all your love, but it was encouraging to my family that people were cheering me on in the background!
For the last several days I have had some thoughts I feel I need to share with you. Many of you already know that I am a person of faith, but I have only touched the surface of that reality in prior posts of what that faith actually means to me. In the past I have shared with you concerning the peace I have, and that has always been evident, except for the occasional moments (being human) when I did have some pervading fear – even as recently as early last week when I was not sure what would happen to me upon learning about this TPA treatment and how it could affect me. Last Tuesday, 2 of members of our pastoral team, plus a good friend and former pastor came up to the hospital to pray for me. I had called them because of the scripture that says, “Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord”. (James 5:14) After they prayed for me and I myself prayed to have the fear removed that I had within me concerning the unknown, I overwhelmingly sensed “peace” and I can testify to that fact as it was real – all the way through the procedure until this very moment. Whether or not I was healed at that moment is not known, but I carry on in faith that God goes before me and gives me the peace that I need to endure all obstacles.
Before this latest clotting episode, I have had the following passage swirling around in my head for many weeks which reads, “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal”. (2 Corinthians 4:16-18). Allow me to paraphrase this for you from my own personal point of view … The first part of this verse tells us not to lose heart, because we are wasting away (boy do I know this), yet on the inside (not physically but spiritually) I am being renewed day by day. For our “minute” and momentary (fleeting) troubles are achieving for us an eternal glory (heaven) that outweighs anything on this earth (I love this). Eternity is forever, the here and now is just temporary. If I/we fix our eyes on only what is seen, we lose sight of all that God wants us to be here on earth, and if we dwell (by God’s grace try to stay true or obedient to His word), we can have live on this earth with an eternal perspective which out does anything the world has to offer. I know in my own life this order often gets turned around because I don’t always put God before everything I do, therefore I fail and it keeps me from the beauty of the relationship and the peace that usually prevails which can happen when we trust Him for everything. One of the main reasons I think about this passage so often is that I do not have perfect health, of which I have never blamed God for, but have always thought it was His way of showing me that I needed to trust Him even through the most difficult times in life.
Lastly, there is one more passage I would like to share with each of you that is one of the most comforting passages I know, and one of many favorites at that. It is taken from John 14:1-4, and it is where Jesus is comforting his own disciples through these words, “Do not let your hearts be troubled. You believe in God; believe also in me. My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. You know the way to the place where I am going.” When you live your life with an illness such as portal hypertension or any other sickness of which the unknown is uncertain, it is comforting to know that when the end comes, full healing will take place because of a decision I made as a young child, to believe in all that Christ Jesus, God’s only son did for me by dying on a cross for my sin. When I think of this and the sacrifice that was made on my behalf, and the gift of eternal life that was given, it is a tremendous comfort – and in reality it makes life worth living all the more! As I look to the future, it may not be bright in many respects for me or anyone one of us, however I press on despite the odds!
One of the first messages I read this morning was from a young man named Pablo Alvarez who courageously relayed his story on a Facebook site I subscribe to called Portal Vein Thrombosis and Portal Vein Thrombosis in Children and Adults. In reading Pablo’s story this morning I was very moved, and I asked if he would allow me to re-post it on this site for the benefit of others. Pablo, I want to thank you for allowing me to share your story. I pray that God will continue to bless you with good health, and that His favour will rest upon you in every other aspect of your young life.
Without further adieu, here is Pablo’s story in his own words …
Hey guys! My name is Pablo. I was diagnosed with PVT at the early age of 6 months. We lived in Ecuador at the time. I might of not been aware at the moment but I know those had to be some tough times for my family. Doctors in Ecuador were clueless as to what was wrong with me. Some doctors wrongly diagnosed me and ended up doing unnecessary surgeries on me. Money was tight and the many sclerotherapy procedures I had were getting too expensive. Thankfully family pitched in when possible. I remember a sclerotherapy being done one year around my birthday (Feb 14), and in particular not looking forward to that at all, including the many others I had along the way. For all those dreaded occasions my entire family would attend and would take up the whole waiting area – I felt very, very loved and supported. It might of been a tough time for me but having my family there always made me feel better, especially because hospitals in Ecuador in the early 90s looked scary, kind of like wards. As years passed we kept the sclerotherapies going. We saw ourselves in this circle. Yeah the treatment helped me out but where was the solution? They didn’t have any besides taking my spleen out. The gut feeling my Mom had at that time was that this was not the solution for me. Around 1996 my Mom realized she had to do something about this. The internet was the first step to our journey. The first thing she searched for was, “The best hospitals in the United States” and there she found Childrens Hospital in Boston, MA. She knew right away that this was where we had to go. We packed our bags and headed to the states. Leaving my sister behind, we thought we would come back after they had cured me.
We arrived at this Social Workers house. She made the term, “Mi casa es tu casa”, literal! She fed us, gave us beds, transportation, and most importantly made us feel welcomed. We went to Children’s in Boston the next morning. My eyes grew as I walked in. Everything was different about this hospital. The first thing I noticed was the automatic spinning doors! I never saw doors like it before. Next, the “I’m in a cold psycho ward feeling”, didn’t apply to this hospital. It was modern, colorful, and had this feeling of hope that lingered in the air. The doctor in Boston told us that taking my spleen out was absurd! My moms gut was right after all. He had mentioned that at the moment (1997) that the only thing to do is to do more sclerotherapies to keep me stable, until he finds the right surgeon and surgery. The following year we flew in my sister. We new our stay would be a little more lengthy than we had thought. My dad found a job & he started making money, he saved enough so we could get our own apartment. We moved in to an apartment with 2 bedrooms,1 bathroom, a small living room, and a tiny kitchen. It was very small but it was comfortable and it was all we needed at the moment. I started school and had to repeat 1st grade again, seeing my English consisted of “hello” and “where is the bathroom”. I remember being scared the first day, but everyone made me feel welcomed and I made friends in no time. As years passed more sclerotherapies were done and more pills I had to take to keep me stable. I was taking 3pills x2 a day. I became quite the expert at swallowing pills, I got used to it.
The new century was approaching when they had diagnosed me with cataracts. My mom and her grandmother had cataracts, so it was genetic. I got the surgery done at the age of 10. I felt like a pirate going into my 4th grade class after the surgery. Everyone stared but I wasn’t sure what they thought about it. They probably thought I looked like a pirate too. I had it in both eyes so they did each eye individually. After that I was diagnosed with polyps. They scheduled me for surgery to remove them. I remember going in a day before so they could transfer plasma and blood into my system. They didn’t want me to bleed to death when they remove them, seeing my platelet count was very low. It was one of the surgeries we wont ever forget because it almost cost me my life. During the surgery they kept putting more blood and plasma into my system. The blood they kept giving me started filling up my lungs. They took 2 polyps out before they stopped the surgery and took me to intensive care. Where I woke up gasping for air, everything was blurry. I just remember my mom fighting off nurses and doctors to be by my side, like she always has. Her being next to me saying “Breath! Breath!” made me feel better. To be honest, I don’t remember the rest. I remember just going back to sleep. I woke up with my Mom, dad and sister next to me. They didn’t complete the surgery there were 2 more polyps to remove. Couple months passed and they prepped me for surgery again to remove the last 2 polyps. My mom prayed and prayed that those 2 polyps were no longer there. Her faith, that day was unstoppable because the doctor came out and said he couldn’t find them, that they were gone! It was just another sign God was still with us and he was still looking out for my family and I.
It was 2002, my mother had received a call from my GI doctor. He told her he found someone that is performing a new surgery (Rex Shunt Procedure) that had a solution to my PVT. He told her his name was Dr. Riccardo Superina and that he was located in Chicago. We packed our bags and took a road trip to Chicago in Jan of 2003! We stayed in the Ronald McDonald house in Chicago. I remember just thinking that scary clown McDonalds promotes being there while I sleep! The next day we met with Dr. Superina at Children’s Memorial. He explained the surgery and after had a look at me. Made me lay down and feel my spleen and all my insides. It was a regular thing for me; To lie down pull my shirt up and have the doctor apologize in advance if his hands are too cold. He took the measuring tape out and then proceeded to measure my big spleen. We concluded our appointment with Dr. Superina and headed to the city to explore. Of course we were going to take advantage of being in Chicago. We went to the Sears tower and later dined at the Cheesecake Factory for the very first time. My stay at the Ronald McDonald was short seeing I would be spending the rest of the time in the hospital. We met a lovely couple that had a daughter being treated at Memorial as well. Everyone was nice and welcoming there. They even gave us floor seats to a Bulls vs. Clippers game. I never enjoyed watching sports because I could never do any kind of sport. There was always the fear of bleeding to easily. I did in fact enjoy the game though because I was up close and personal to these tall dudes that I had seen in ads on TV. It was January 15, 2003, I woke up to shower at 3am. My nerves were out the roof! We took a Ronald McDonald’s shuttle that took us to Memorial. I felt cold and nervous once I walked into the hospital. My family and I waited in the pre-op for the nurses to take me in. I asked if my mom could be with me until they put me to sleep, and they accepted my request. My mom held my hand while they put me to sleep. She was the last thing the old Pablo saw and felt! I remember waking up, dazed and confused with multiple tubes and wires attached to me. I remember feeling like someone stabbed me multiple times in my stomach. It was a sharp pain that I still remember until this day. I spent 3 days in Intensive Care, those 3 days were vague. My parents would take turns to be with me while one went to get coffee or go back to Ronald McDonald and shower. My sister was there with me the whole time though. She would hold my hand and caress it with her thumb. She was 19 at the time. I remember sitting up for the first time. It felt like all my organs were rearranged they were all moving back to their proper place. Walking was hard the first time, fluid kept dripping from my incision. They moved me to a room, where I met my nurse Erica. She always had a smile on her face. She was my favorite out of all of them. I stayed in the hospital for 8 days. 8 long days for me, it felt like weeks and weeks had gone by. I left the hospital very skinny and pale. Walking the first couple days out was hard, I would get tired quickly. I remember we went to the zoo couple days I got out of the hospital. We were walking to the entrance and an old gypsy looking lady approached us. She said, “You are a sick boy, but I will give you a kiss to make you all better”, She was short so I bent down to her level, her kiss gave me chills. She continued to walk opposite ways from us, couple seconds later I looked back cause I was in disbelieved of what had happened. As I looked back she was not there anymore. No where to be found in fact. It was an empty parking lot and she couldn’t had gone that far. Until this day I don’t know where she went. I just take it God sent an angel to kiss me all better. Our trip to Chicago had come to a conclusion and we felt so blessed and went back home with a new experience to remember forever.
My scars were not looking so good though, They had turned into Keloid. For me it was hard a for a 13 year old to have this ugly scar exposed on my neck. People stared with wonder and some people were brave enough to ask. My response was always, “from surgery”. My scar on my stomach was looking better, though it had a little bit of keloid on the top. As I got into High School it got a lot harder, I had to answer to all these new faces. I got countless stares walking down the halls & I stared at them right back as if they were the one with the flaws. People judged me, yes, but once they got to know it was if the scar was invisible and my personality and qualities over took that role. I have had long term friends say they can’t picture me without the scar and that it gives personality. I took it as a compliment because, I myself felt the same way. My mom contacted a plastic surgeon at Children’s to see what he could do about my keloid. Before I knew it he schedule in me for surgery. He sliced the keloid right off my neck. After he started the steriod treatment on me. It helped to a certain extent until the Keloid came back. It wasnt as bad as before but it was still there.
I kept going back for ultra sounds to see how my shunt was doing! It was all flowing smoothly! My platelet count went up. When I have a cut I don’t bleed as much. It just started to all come together. I got a little break from being in the operating table so many times and started to actually view my life as if I was “normal”. Yes the restrictions were still there, yes the scars were still there, but my view on life was different. We moved to FL going into my junior year of High School. We have family who live here so we decided, why not! We love tropical weather much better anyways.
I until this day I thank God for what he did. How he put all these people in my path at the right time. How he made so many things that would have been impossible, possible. Every little detail in my life I am thankful for. I would not be here without His help and the hard work and sacrifices my family have done for me. I have had one hell of a life and I am only 21 at the moment. I will never get tired of telling this story because people need to know how incredible our God really is.
It might be a rare disease but your not alone! There are people who have stories that might not be the same as yours but its surrounded on the same thing PVT! If you have been just diagnosed or haven’t had the surgery yet, be strong! You have to keep fighting this battle in order to succeed. God will always be there for you, even if you don’t believe! He still loves you, even if you don’t believe! YOU WILL GET THROUGH THIS! Just like I did and many of you that are in this group!
If you have any question about my story or have questions of details I did not cover contact my mom! Anita Merchan she will be there for anyone who needs advice or just to simply talk! I am here also if you have any questions or need any advice!
Prompted by a comment I received a few weeks ago from a great-grandmother in North Carolina concerning her 2 1/2 year old great-granddaughter, I want to bring attention to a rare condition called Abernethy Malformation.
Congenital absence of the portal vein called a portosystemic shunt (aka Abernethy Malformation or liver shunt) causes blood to drain away from the portal system, and in turn the blood bypasses the liver. In more recent findings however, there is new evidence which seems to point to the portal vein as being so tiny it does not present itself in regular testing Continue reading →
Tonight I want to share a good news story from a comment posted on my blog earlier this evening. The story comes from Janet who suffered from portal hypertension for many years. Here is her story …
“Just found this site today and had been posting on DVT forum previously. Have had PVT for 9 years making it a chronic condition and also had one episode of bleeding esophageal varices 3 years ago. I have had numerous endoscopies with 5 sessions of banding and at last scope had Grade II varices. I have been on nadolol to keep the pressure down Continue reading →
It’s been just over a year since Jakob Temple had Rex Shunt surgery in Chicago at Children’s Memorial Hospital under the expertise of Dr.Superina. I know it’s been a long time coming, but I am happy to report that his 1 – year check-up was good and he is leading a normal life now. Jakob’s mom Jen recently posted an update on a Facebook site called Portal Vein Thrombosis and Portal Hypertension in Children and Adults …
“I just wanted to let all of you know that Jakob had his 1 year check up last week and he got a clean bill of health! We are so blessed and grateful! We also got to meet another PVT family! We all go through so much with our kids and this group of people have been so supportive and I am so glad to see new people joining who are looking for support because they are sure to find it here! Jakob was so excited to meet his new best friend who also is a PVT kiddo who touched our hearts and his mom Kelly is amazing! There is something to be said about this group of people when you have never met someone in your entire life and when you finally meet them you start crying and have an instant connection with! I will forever treasure my PVT moms! I hope that one day we can all meet up! Jakob was so amazed to see that someone else has the same scars as him! I almost forgot to mention Dr Superina took Jakob off of his aspirin now! So as of tomorrow – no more aspirin – no meds – no nothing – so happy! Now I will continue to pray for all of your children and hold you all close in our hearts and minds … Hugs from Canada”.
Everyone loves a happy ending when it comes to the health of any loved one and I might add especially children, and Jakob is no exception. Like Jen stated in her post and I agree wholeheartedly, we need to pray for all these children with PVT and hold them close in our hearts and minds. For the happy endings and there are now more than a few, we are thankful for the work of dedicated specialists like Dr. Superina and others around the world, however there are those children (and adults) whose cases are far too complicated or advanced for surgery of this kind.
On the note above I want to segue into Kory Kohler’s current situation. Kory is currently facing a possible rare type of surgery called the Sugiura Procedure and this is due to the fact he was not a suitable candidate for the Rex Shunt. (Kory is pictured above with Jakob Temple). Kory is in good hands with Dr. Superina; however we need to remember him and his family in our thoughts and prayers as they look toward the next step in Kory’s journey. You can read more about Kory’s journey and donate to his cause by clicking here: http://www.caringbridge.org/visit/korykohler21
I’ve talked about Jakob and Kory here, but there is another little guy by the name of Carson Kommer who just had Rex Shunt surgery this past Monday (Feb. 2oth) at Children’s Memorial by Dr. Superina. According to a message I received earlier today from Kory’s mom, Carson is doing relatively well and the flow on the shunt seems to be working fine. He is not totally out of the woods yet – so we can continue to remember him in both our prayers and thoughts.
To date there is not yet an ‘official’ foundation set up to help families whose children are facing surgeries of this nature, but there is a site where people can donate to help families differ costs such as travel, food, or lodging when in Chicago for the Rex Shunt or related PVT surgeries. The site is called PVT/Rex Shunt Family Fund and was set up within the last year by Shelly Hart whose own daughter Aubree had a successful Rex Shunt procedure done a half a decade ago. Your donations to the fund would be appreciated as I know there are families who definitely could benefit from this. Click here to view the site. Thank you in advance for your consideration to this most worthy cause!
As per Tatyana I want to update all of you who have been following the story of little Sonya. It is hard to believe that it has been over 2 month’s since Sonya’s surgery at Children’s Memorial Hospital in Chicago … time has passed very quickly, but unfortunately Sonya continues to have a few complications.
About a month after Sonya’s surgery she developed a hernia on the left side of her incision. Dr.Superina has looked at it and he believes he can fix it, however Sonya will have taken off Coumadin first before any attempt can be made to intercede. He is looking at doing the surgery at the 6 month post op stage which would be sometime in March of 2012. The Mesocaval Shunt operation that Dr. Superina performed on Sonya seems to be working, however she has fluid in her belly and the hernia is getting larger. It would be risky and dangerous to go back to the Ukraine at this point with the hernia and the fact that she is on Coumadin. According to Tatyana the hospitals in the Ukraine do not have the knowledge to deal with this, especially if Sonya was injured in any manner. It would be hard to stop the bleeding on Coumadin and she could easily die if it was not stopped in time. So for the sake of health and safety they will stay put and when the time comes for them to leave they will have to take the risk and go home. They have a follow-up appointment with Dr. Superina on November 10th and from that point he should have a clearer picture of what needs to be done.
For background information leading up to the surgery on Sonya click the following links:
Tatyana and her family are looking forward to being reunited as they have been apart for over 2 months now. When they finally arrive home she will be doing paper work to apply for a visa to study in the US. Tatyana is a physician and in order to practise medicine in the US she would have to upgrade to US standards. After upgrading she would be expected to complete a one year residency in a US hospital.
Please continue to pray for Sonya’s health and now Tatyana as she and her family make preparation for application in the US.
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