Tag Archives: Riccardo Superina

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

A Missing Portal Vein?

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

Update on Sonya … 7 Months Post Op

Sonya with her mother Tatyana

Almost 1 year ago I brought you the story of Sonya Danilenko, a little girl from Zaporozhye, Ukraine who was dangerously ill with portal hypertension and subsequent bleeding esophogeal varices.  Sonya’s mom, Tatyana was searching for information on the Rex Shunt procedure and happened upon this blog where she learned of the wonderful work of a specialist at Children’s Memorial Hospital in Chicago Illinois by the name of Dr. Riccardo Superina.  Initially, after some very close calls in the Ukraine, Tatyana, who is an emergency physician herself, decided to take Sonya to Germany to see if doctor’s there could assess and perform this rare procedure.  As is the case for many countries in the world, Ukraine does not have the resources or specialists that are able to handle such a complex condition as portal hypertension.  Unfortunately the German doctors were also unable to perform the operation, so Tatyana made arrangements to send her imaging to Dr. Superina and as they say, “the rest is history”.

 After successfully raising the necessary funds to fly to the US (a story in itself), Tatyana arrived in Chicago with Sonya at the end of August 2011, and shortly thereafter Sonya had her surgery.  In the 11.5 hours of surgery Dr. Superina attempted to connect the shunt 5 times, but it clotted off almost immediately on every try. In the end he ended up doing a mesocaval shunt  which is the least desirable, but nevertheless it  is open and flowing.  Sonya is scheduled for her follow-up appointment with Dr. Superina this May in Chicago.  She will need to be continually monitored, but so far she continues to thrive.  In my mind I credit Sonya’s overall improvement to the great care and expertise of Dr. Superina, the staff at Children’s Memorial, her mom Tatyana,  and not to mention the  prayers of many people around the world!

In conclusion it seems that both portal hypertension and its dangerous side effects outweigh any attempt at surgical intervention if the candidate is suitable.  If what I have been told is correct I think that Dr. Superina maybe nearing around the 140 mark for operations on children with the large majority of those being successful.  There are other specialists in the world who have also realized success in treating children and that number combined with what has been done at Children’s Memorial is around 300.   I stand corrected on this information so if you’ve heard of anything different please let me know!

To read more about Sonya’s story click the following links:

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

http://www.portal-hypertension.com/2011/08/28/rex-shunt-for-sonya-update-08-28-11/

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

http://www.portal-hypertension.com/post_op_6_days/

http://www.portal-hypertension.com/sonya-post-op-one-week-later/

http://www.portal-hypertension.com/follow-up-help-for-sonya-post-op-2-weeks/

http://www.portal-hypertension.com/little-sonya-2-month-post-op-update/

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