Category Archives: rex shunt procedure

*UPDATE* New Non-surgical Procedure for PVT (PVR-TIPS)

PLEASE NOTE:  Since my original post (March 13/20) I would like to reiterate that this relatively new procedure is indeed helping people with the right physical criteria and it not always suitable for everyone.  The results for those who have had the procedure are quite astounding though as you can read from the comments I have received so far.  On my post called “My Portal Hypertension Journey” a friend (Greg) who I met since I started this blog, just posted his own personal success story after suffering for 40 years with the condition.  I have reposted his comments at the end of this post as it was through Dr. Salem and his team that Greg’s condition has been reversed.  October 27/20

With great optimism I share this news with you today.  Dr. Riad Salem at Northwestern University in Chicago Illinois, and a team of over a dozen doctors have recently developed and tested a new non-surgical procedure for the treatment of portal vein thrombosis (PVT).

A few days ago Dr. Salem reached out to me via this blog with the results of the clinical study.   His words below encapsulate this new technique.   

“At Northwestern, we have pioneered a new, non-surgical approach for the treatment of portal vein thrombosis with or without cavernomatous transformation.  It involves creating a new channel in the clotted portal vein, and placing a transjugular intrahepatic portosystemic shunt (TIPS) stent. We do this using ultrasound and X-ray guidance. Our first series of 61 patients has already been published with excellent success, and many of these patients have gone on to liver transplantation since they had cirrhosis of the liver. We are now performing this on adults without cirrhosis with cavernoma. Some of these patients have varices that have bled. This is a procedure you should be evaluated for if you are considering a Rex shunt or any other interventianal operation since this is a less evasive alternative”.

Contact Information

Riad Salem MD MBA
Professor of Radiology, Medicine and Surgery
Chief, Section of Vascular and Interventional Radiology
Vice-Chairman, Image-Guided Therapy
Department of Radiology
Northwestern University
676 N St Clair, Suite 800
Chicago, IL USA 60611
1-312-695-6371 office

Dr. Salem is glad to answer questions for patients and has asked that you contact him directly at rsalem1@nm.org 

If you have a story to share about your personal journey with portal hypertension or have had the procedure please feel free to post it. 

Addendum comment posted October 26/20 as mentioned above: 

“Thank you, Clint for providing a valuable conduit for information regarding PVT for patients and their families with PVT.

I have had PVT since birth, and as a consequence, have experienced 2 major bleeds from my esophageal varicies when I was in high school. As a lifesaving measure to decompress my esophageal varicies, I had a Splenorenal shunt created to prevent future bleeds. I was blessed to have been put under the care of two distinguished physicians and exemplary individuals: Gastroenterologist, Dr. William Baldus, and surgeon, Dr. Martin Adson, both doctors at the Mayo Clinic.

I began to experience the gradual onset of hepatic encephalopathy in my mid 30’s. As I have aged (now 57) I have had a growing list of health issues tied to PVT. Although I have not had any banding of my varicies done for few years now, I still have esophageal and gastric varicies.

I am writing this entry because I now feel a sense of hope for me and my family. I am grateful to Dr. Riad Salem, another distinguished physician and exemplary person who is an interventional radiologist at Northwestern University Medical Center in Chicago. Dr. Salem was able to place a stent in and through what was the cavernous transformation of my portal vein and and connect my atrophied liver with an entirely new supply of blood from the nexus of my Inferior vena cava and splenic vein. The initial transformation was very significant, and I continue to do well. It is my understanding that improvement in the symptoms of PVT and hepatic encephalopathy as my body adjusts to this welcome change.


Dr. Salem, his colleagues and staff at Northwestern University are among the best of the best. After surgeons attempted a REX shunt on me at another institution in 1979, albeit unsuccessfully because of the atrophied condition of my liver, I was resigned to the prospect that I would never experience the benefit of an open portal vein. Dr. Salem and his colleagues have helped me and many others realize the many benefits of an open portal vein”.

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward”.  – Martin Luther King Jr.

 

Musings on a New Year

imagesCAXSRNQNAnd I said to the man who stood at the gate of the year: “Give me a light that I may tread safely into the unknown.” And he replied: “Go out into the darkness and put your hand into the Hand of God. That shall be to you better than light and safer than a known way.”– Minnie L. Haskins

Being just a few weeks into another new year, undoubtedly many of us or those we love will face new challenges relating to portal hypertension (PH) and its subsequent side effects.  If you have recently been diagnosed with PH or have lived with the condition for a number of years now, the related stresses of the unknown can be very disconcerting.  On a broader scale but not exactly related, we may also be facing additional anxiety in areas relating to our finances, relationships, or quite possibly we could be suffering the loss of a loved one.  Our world is being stressed also, and on almost a daily basis we hear about the tragic effects of war, famine, severe weather, economic turmoil and human injustice on unparalleled levels.

Although tragedy and stress abound everywhere  by no means would I ever say 2012  was an exception, however all was not “doom and gloom” as you might agree.  Maybe you celebrated the birth of a baby in your family and all the joy that new life brings.  You might also have had the chance to commemorate a graduation,  wedding, anniversary, new job, a restored relationship or maybe you are into the beginnings of a new relationship.   If you have had a breakthrough or a complete restoration on your own health or that of a loved one this too is cause for great celebration.  All of these “milestones” can bring joy in the midst of a world seemingly gone wrong. Looking ahead into this new year, my greatest desire for you is that you are able to enjoy many more happy occasions, but also that you may find true peace at those times when things don’t always seem to go well.

As I have reiterated in prior posts, my intentions in writing this blog have never changed, so I continue to seek out new research, try to  decipher it, and in turn share it with you.  Secondly, and I know this sounds rather redundant, but I want to provide a forum where others can post their own stories.  Since starting this project a few years ago, I have had the privilege of replying to over 700 comments  so I want to thank all those who have contributed in that manner. Those same folks have taught me a lot and have called into question some of the standard treatment protocols, all the while taking into account that each of us are genetically different and we can respond in various manners.  Having said that,  it is important to note that there is a commonality in the overall care of PH patients, and for the most part those include medications such as blood thinners for obvious reasons, and beta blockers to slow the heart rate down.

I can say that I have seen what I would call only minor progression in the treatment of PH, and to date I think it would be safe to surmise that there have been no major breakthroughs except for the evasive measures of the Rex Shunt procedure and other rare surgical interventions in the last decade which seem to work best on younger children.  The fact that the condition is still relatively rare means that not many research dollars are directed to the condition, and another contributing factor is likely due to the face that there is very low media awareness.  Except for raising funds on an individual basis, the challenge to set up and maintain a charity association whereby those that need funds can utilize this resource as need be, seems to be far from reach.  Taking nothing away though from the few I know who have been successful on even a small scale at raising funds to help parents with children, my hat really goes off to you.

 On a personal level I always look for inspiration that I can share with others, or apply to my own life.  I understand the challenges of PH having lived with the condition over a decade now, not to mention a recent associated health scare back in the later part of August 2012.  On another level I also experienced the passing of my own mother in the later part of October.  Mom had not been well for many years, so in many way it is a blessing she no longer has to suffer, however the void is there as I miss her and am constantly reminded of her as I carry on despite this loss.   I have also experienced joy this past year, with our son’s graduation from high school, and many other less significant things which were all cause for celebration.  If you have read some of my posts on this blog, you may have realized, that I have talked about faith being an important part of my life.   Overall I know the peace of God in my life, and with all the setbacks (and ‘yes’ joys) of this last year, I just carry on in faith that He will see me through.  For you the reader, whatever you are going through at this time, I count it a privilege to pray for you, and at the very least offer a listening ear to what you may be facing at this time.

All the best in 2013,

Clint

Click here for prior post:  http://www.portal-hypertension.com/a-personal-medical-update-new-terminology

Pablo Alvarez … A Courageous Young PVT Survivor Tells His Story

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!

Thank you,
Pablo Alvarez

Jakob Temple … 1 Year After a Rex Shunt

470_bc_jakob_101024_225128It’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!

Until next time,

Clint

Little Sonya (2 Month Post Op Update)

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:

http://www.portal-hypertension.com/little-sonyas-plight-update/

http://www.portal-hypertension.com/rex-shunt-sonya/

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.

I’ll keep you posted!

Until next time,

Clint

Follow Up Help for Sonya *Post OP* 2 Weeks

September 8, 2011
For those of you following the story of little Sonya and her Rex Shunt operation in Chicago last week, her Mom sent me an update this morning.

As you know after over 11 hours of surgery with Dr. Superina at Children’s Memorial he was only able to do a Mesocaval Shunt instead of the Rex Shunt as many attempts to do that were met with clots which disallowed it from working.  Now the problem is whether or not the Mesocavel Shunt is actually working and they will not know anything for a day or tw0.  Sonya’s INR blood is fluctuating too much so they are trying to understand this more.  Dr.Superina has ordered an ultrasound to see if they can figure out what exactly is going on with her system.  They are concerned with her levels because she is still bleeding from her incision, and she has also been bruising.  Another grave concern is the fact that she still has gastric varices and she could also be at risk for bleeding again.

Sonya also continues to have digestion and reflux problems. She could not eat the regular formula or baby foods, and had trouble keeping anything down. The nutritionist in the hospital gave her a special formula called EleCare formula and it seems like Sonya is able to digest that. They provided Tatyana with 6 cans supply of this formula, which was covered from an emergency fund from the hospital.   They also gave here a Warfarin supply for 2 months, which was covered from the same fund. Tatyana will still have to buy liquid Omeprasol for her, and it is expensive at 184$ for 300 ml which is her monthly amount. She still needs to buy formula and Coumadin plus other medications to take home for 2 months after when she leaves and she does not know how she is going to pay for it at this point. They are going to stay in Chicago one-month post-op for follow-up, so they will need funds for food.  She also mentioned that they would need to purchase warmer clothing; however Shelly has rallied some people from her Facebook who will provide in that regard. Shelly also will be donating her profits from the sale of an on line women’s speciality store and here is the address for that:  http://www.mythirtyone.com/shellyhart/    all orders in the US will be shipped directly however orders to Canada will have to be shipped by Shelly herself.

Also a big thanks to Shelly for setting up another important site just today for donations to families of children with PVT/Rex Shunts – check this out:  http://www.everribbon.com/ribbon/view/1399  (I can see this directly helping not only Sonya’s family but many others in the days/years to come). 

Please continue pray for Sonya’s needs – first of all for her health problems and secondly for financial issues that have arisen from her recent discharge.

Sonya *POST OP* One Week Later

September 5, 2011

As of noon yesterday (Sept. 4th) I received a message from Tatyana stating that Sonya continues to improve!  Tatyana said she was eating regular food, she is on oral pain medication (Tylenol), her infusion was disconnected, and she has even begun to walk a little although she tires quickly.  They also started her on oral blood thinners.

Tatyana was very elated with the great progress Sonya had made in just only one day!  She attributes that progress to prayer and she is thankful to everyone for being faithful to the cause!
The picture on the left was taken earlier today and below is a small powerpoint presentation of pictures taken Saturday and Sunday morning.
Click to view powerpoint:  Sonya’s Recovery

Sonya *Post Op* 6 days later

September 4, 2011

When I first saw this latest picture of Sonya which Tatyana sent me early yesterday morning, I could not help but be struck by the  by the hopefulness in her eyes.  The physical toll this child has endured has been unimaginable, but she seems to be very resilient and this is cause for joy.  The progress she has made is due in part by the skilled hands of Dr. Superina, and all the doctors and staff at Children’s Memorial.  I also believe that prayer has been the undergirding force behind her progress, and along with Tatyana I want to thank all of you.

Is Sonya out of the woods yet as far as her condition is concerned?  Unfortunately the answer is no for now as there are some complications that will be monitored closely for awhile.  Here is Tatyana’s latest message …

We had a rough day on Thursday- I would call it a gastro-intestinal crisis!  The NG tube was removed on Wednesday and she could even drink Pedialites and everything seemed to be okay, but on Thursday doctors wanted her to start eating, but that was not to be so she started vomiting again. She was cried all the day long and they decided to put the NG tube back. So we had another bad night beginning Thursday to Friday. She continued to vomit and was feeling very bad. She was very tired also and was not interested in any activity- even music therapy. She was not even reacting when I left her with volunteers as I had to go to where I was staying for half an hour- just to pick some needed items. When I returned, she was crying because she had seen me- it was a reaction, even though negative.

Sonya was moved up to the 5th floor at 7 p.m. on Friday after 5 days spent in ICU. They removed the NG tube, so she started feeling better and even smiled once to me. She slept well this night, and I believe that from now on she will recover sooner, having more rest and feeling less stressed.   Please continue to pray for stomach as it seems to be very sensitive still.  She vomited a little this morning (Saturday),  and started crying again. They crush her pills (blood thinners), but they irritate her empty stomach.  I was always try to protect her sensitive tummy by giving her omeprazole which reduces acid production and I keep her on diet. Now they are giving her Aspirin without any protection and she continues to vomit.  And – the varices are still there, so they have to think about protection from bleeding.  This is a major concern that I wanted to share with you. She is still so very weak and tired, having almost 11-hours of abdominal surgery, being 5 days in ICU where she was bothered every 20 minutes, and never getting any rest which she needed the most.
Hopefully things will improve for us since we are here.   Thank you for your concern for us.
Sincerely,
 
Tatyana
Scroll down for earlier posts on Sonya’s operation …

August 31, 2011 Update Sonya

 As per email from Shelly earlier today, I am posting a message she received from Tatyana regarding Sonya’s current condition.  Sonya has rallied somewhat, but still is being monitored closely…

“I’ve seen your incoming calls but couldn’t answer. We’ve had a very rough day and night. Only now she feels better. She was extubated yesterday at 2:30 p.m. and was having trouble with breathing. She has pneumonia and needs oxygen all of the time, they tryed to reduce it’s volume but she turned violet in a seconds and her saturation failed.

Also yesterday she had problems with pain control.   Since she has been extubated and they were not sedating her anymore,  she was very restless, and has been moving and crying quite a bit. She became tolerant to morphin really quickly and we’ve seen the side effects such as breathing depression and agitation. Doctors didn’t really want to do anything about that until the new doctors from the pain control team came and observed her crying. They switched her to another drug and as soon as it started working, she felt more comfortable and was even able to sleep. But as you know the nurses are going back and forth all af the time and they kept waking her up all of the time to draw blood, check her IV lines, and to take her temperature etc. It is hard for her to have a long, healing sleep.  I have been there beside her most of the time, keeping her from harming herself, wiping off her precious tears, pushing the PCA button every 8 minutes or so, singing songs to her, or trying to do at least to comfort her.

Today they removed the NG tube and PIV. The arterial line started leaking so they had to remove it because arterial bleed is dangerous, and a fast way to loose blood. So she’s got only one PIV,CIV nasal oxygen catheters,  and has a pressure measuring manget on  her.

She is drinking juice with water now and looks happier then a day before”.

Tatyana is very tired and emotionally drained.  With Sonya now being able to drink juice and even looking happier, maybe Tatyana will be able to get some more rest.  As we continue to pray for Sonya, let’s also remember Tatyana and her family back at home.

Until next time,

Clint

August 30, 2011 Sonya … After Surgery

It’s now shortly after midnight here where I am, and I want to update you on Sonya’s operation which took place early yesterday morning.  Shelly Hart was able to spend the day with Tatyana while she was in surgery today and again I and other’s are most grateful for that.  In Shelly’s own words I have copied and pasted 2 posts she made on Faceboook a few hours ago.

3 hours ago …

“Headed home. So thankful for the opportunity to meet an amazing woman who went to extraordinary lengths to save a baby that nobody wanted, in a country that viewed her as “damaged goods” and told her to leave her to die. Most of us dealt with medical problems with our birth children, but this mother CHOSE her, knowing the rough road ahead. I am utterly amazed by her compassion and faith”.

4 hours ago …

“Sonya is finally out of surgery after 11 1/2 hours of being under anesthesia. Dr.S tried 5 times to connect the shunt, but it clotted off almost immediately every time. He ended up doing a messocaval shunt which is the least desirable, but …is open and flowing. She is stable and Tatyana is anxiously awaiting to go to ICU to see her. They left her intubated for now to give her little body a break. Please pray that Tatyana will get rest and have strength to care for her and for Sonya’s quick recovery. It has been a day with tears of joy and tears of disappointment, but God is in control regardless if the outcome”.

Thanks again Shelly for your compassion and care for Tatyana yesterday.  Also want to thank everyone else for praying and for your words of encouragement for Tatyana through Facebook and otherwise.  Please continue to remember Sonya and Tatyana at this time.    I hope to speak with Tatyana later this week.  I’ll keep you all posted.

Until next time,

Clint

Sonya’s history: http://www.portal-hypertension.com/little-sonyas-plight-update/

http://www.portal-hypertension.com/rex-shunt-for-sonya-update-08-28-11/

Sonya *POST OP* … 3 days later (08-31-11)

 August 31, 2011 Update from Tatyana re: Sonya

As per email from Shelly earlier today, I am posting a message she received from Tatyana regarding Sonya’s current condition.  Sonya has rallied somewhat, but still is being monitored closely…

“I’ve seen your incoming calls but couldn’t answer. We’ve had a very rough day and night. Only now she feels better. She was extubated yesterday at 2:30 p.m. and was having trouble with breathing. She has pneumonia and needs oxygen all of the time, they tryed to reduce it’s volume but she turned violet in a seconds and her saturation failed.

Also yesterday she had problems with pain control.   Since she has been extubated and they were not sedating her anymore,  she was very restless, and has been moving and crying quite a bit. She became tolerant to morphin really quickly and we’ve seen the side effects such as breathing depression and agitation. Doctors didn’t really want to do anything about that until the new doctors from the pain control team came and observed her crying. They switched her to another drug and as soon as it started working, she felt more comfortable and was even able to sleep. But as you know the nurses are going back and forth all af the time and they kept waking her up all of the time to draw blood, check her IV lines, and to take her temperature etc. It is hard for her to have a long, healing sleep.  I have been there beside her most of the time, keeping her from harming herself, wiping off her precious tears, pushing the PCA button every 8 minutes or so, singing songs to her, or trying to do at least to comfort her.

Today they removed the NG tube and PIV. The arterial line started leaking so they had to remove it because arterial bleed is dangerous, and a fast way to loose blood. So she’s got only one PIV,CIV nasal oxygen catheters,  and has a pressure measuring manget on  her.

She is drinking juice with water now and looks happier then a day before”.

Tatyana is very tired and emotionally drained.  With Sonya now being able to drink juice and even looking happier, maybe Tatyana will be able to get some more rest.  As we continue to pray for Sonya, let’s also remember Tatyana and her family back at home.

Until next time,

Clint

August 30, 2011 Sonya … After Surgery

It’s now shortly after midnight here where I am, and I want to update you on Sonya’s operation which took place early yesterday morning.  Shelly Hart was able to spend the day with Tatyana while she was in surgery today and again I and other’s are most grateful for that.  In Shelly’s own words I have copied and pasted 2 posts she made on Faceboook a few hours ago.

3 hours ago …

“Headed home. So thankful for the opportunity to meet an amazing woman who went to extraordinary lengths to save a baby that nobody wanted, in a country that viewed her as “damaged goods” and told her to leave her to die. Most of us dealt with medical problems with our birth children, but this mother CHOSE her, knowing the rough road ahead. I am utterly amazed by her compassion and faith”.

4 hours ago …

“Sonya is finally out of surgery after 11 1/2 hours of being under anesthesia. Dr.S tried 5 times to connect the shunt, but it clotted off almost immediately every time. He ended up doing a messocaval shunt which is the least desirable, but …is open and flowing. She is stable and Tatyana is anxiously awaiting to go to ICU to see her. They left her intubated for now to give her little body a break. Please pray that Tatyana will get rest and have strength to care for her and for Sonya’s quick recovery. It has been a day with tears of joy and tears of disappointment, but God is in control regardless if the outcome”.

Thanks again Shelly for your compassion and care for Tatyana yesterday.  Also want to thank everyone else for praying and for your words of encouragement for Tatyana through Facebook and otherwise.  Please continue to remember Sonya and Tatyana at this time.    I hope to speak with Tatyana later this week.  I’ll keep you all posted.

Until next time,

Clint

Sonya’s history: http://www.portal-hypertension.com/little-sonyas-plight-update/

                                   http://www.portal-hypertension.com/rex-shunt-for-sonya-update-08-28-11/

Rex Shunt for Sonya August 28, 2011

August 28, 2011

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 .

For Sonya’s story click here:  http://www.portal-hypertension.com/little-sonyas-plight-update/

Dear Clint, 

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)
 
Blessings,
 
Tatyana

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!

Until next time,

Clint

Little Sonya’s Plight … *NEW Update 07-02-11 *

**Sonya Update 07-02-11**

IMG_03692As 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

Until next time,

Clint