Tag Archives: esophogeal varices

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

Good News … A Clean Bill of Health for Janet!

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

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

The Peace that Gets Me Through

The words, “there is nothing further we can do for you” didn’t really hit me until shortly after my appointment with the specialist on the drive home that day.    I had hoped for some more positive news, but obviously  it was not meant to be.

This past October (2010) I had met with my gastroenterologist after her one year study leave regarding portal hypertension.  Due to the high level of anticoagulants I am currently on to prevent further clotting, she and other specialists agreed  that in order to do any kind of procedure my life would be compromised greatly.   It is important to note that just over 2 year’s ago, I was being considered for a rare cluster transplant which would have entailed the transplantation of my liver, stomach, pancreas, and the large and small intestine.  Doctors were also considering the placement of a surgical stint (TIPPS) to relieve the pressure.   At that time a panel of 5 specialists – 3 liver specialists, my gastroenterologist, and my haematologist had reveiwed my case.

Beyond the fact that nothing further can be done for me, one small measure would be to titrate me another 20 mg on my Nadolol to keep the pressure down.  My blood pressure seems to be relatively stable right now, so my gastroenterologist was hesitant to change the dosage in fear that it would make me even more tired than I get now.  In the event of a bleed, of course they would have to use evasive measures (banding) to stop the bleeding, but with the high dosage of anti-coagulants (Fragmin 12,500 IU injections/twice per day) that I am currently on, the fear is I would likely continue to bleed from the varices due to ulceration after the bands had “sloughed” off.

The picture on the left shows an actual diagram I showed my doctor on that day from an article which was posted in The New England Journal of Medicine.  The black pen marks represent the extensive clotting to the mesenteric, portal, and splenic veins as noted by my gastroenterologist on that day.

As mentioned above my doctor (Dr.Puneeta Tandon) had been on a study leave this past year to the University of Barcelona in Spain, and she also spent time at Yale School of Medicine in New Haven, Connecticut.   She specifically received training in portal hypertension under the mentor-ship of Dr. Guadalupe Garcia-Tsao from Yale.   Recalling what she said really solidified what I had been told a few year’s ago and it brought me back to the reality that my life could end abruptly… I am a ticking time bomb!  Despite knowing that – I’ve lived 8 year’s beyond my original diagnosis, and that truly is a gift!  It’s also important to note that since my diagnosis I have endured countless medical tests, several iron infusions (4 per year), over 4,380 needles (Fragmin 2/day for the last 6 years), almost daily intestinal pain, a serious bleed (2004), not to mention clots pulmonary embolism to both my lungs in early February 2005.

While mulling over the verdict I was given on the drive home,  I recalled a text from the Bible which states, “Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Saviour and my God”. The passage is found in Psalm 42:5.  At that point I just needed to  trust, and quite simply put “my hope in God” for whatever may come my way regarding the future!  Until this point in my blog,  I had really never expounded about the overriding peace I have concerning my condition, but felt prompted to tell you more in hopes that you may also be encouraged?   First of all I need to tell you that only on very rare occasions I do get fearful when I think of the real possibility of a fatal bleed.  If a bleed were to happen, I get concerned about where exactly I will be, who will be there when it happens, will I make it to the hospital in time, or will I go into shock like many do when faced with the dire consequences?   Thankfully that overriding peace is what the Bible states as, “the peace of God that transends  all understanding” (Philippians 4:7). The peace that carries me through stems from a personal relationship I have with Christ, God’s son who ultimately paid the ultimate sacrifice for my sin, and has promised me eternal life where I will be free from pain and suffering in Heaven when I die (John 14:1-4).  I know no one really wants to talk about death or dying,  but in actuality one’s passing  does brings healing and when there is no hope for a cure, then at least the suffering is past.

Since my diagnosis almost 9 year’s ago, I believe prayer has been the key element for the under girding force that has enabled to stay strong, and optimistic despite the obstacles I face.  Along with personal prayer, I am extremely grateful to countless others who I know have supported me in this regard.  I do believe God can heal, but in my case He has chosen otherwise for reasons I do not understand except to say that I know there is a purpose for everything.  In the meantime – I simply carry on and am grateful for life and the very breath I breathe each day.

Corrie Ten Boom, the Dutch Christian Holocaust survivor who helped Jews escape the Nazi’s during World War II penned the following, “Faith sees the invisible, believes the unbelievable, and receives the impossible.” Her words ring true for me today.  Although God is invisible to the naked eye, we can only see Him through the eyes of faith (2 Corinthians 4:18).

Portal Hypertension … A Few More Answers

The  much anticipated appointment with my Gastroenterologist has come and gone (over 2 weeks past).  In a prior post I mentioned that  my  doctor had been away for a year on a study leave specifically regarding Portal Hypertension.   She studied at both The University of Barcelona (Spain), and also at the Yale School of Medicine in New Haven, Connecticut.  For myself personally I had hoped to at least learn of any new developments on the Portal Hypertension front, but unfortunately in my case, that was not to be.  All being said, I have decided to hold off on posting my personal thoughts until my next post as I would like to dedicate a few more lines on the subject than what I rightfully should do here.   So as promised I will address some of the specific questions a few of my bloggers had for my Gastroenterologist in which I was able to ask her on my last appointment.

Audra wanted to know what my doctor had to say about heart rate during exercise for patients with Portal Vein Thrombosis (PVT) and Esophageal Varices.  She takes Propranolol (10 mg twice per day) to lower blood pressure.  She also takes a diuretic to prevent ascites.  In response to Audra’s questions my doctor said that it is not recommended to engage in exercise that would elevate the  heart rate to dangerous levels  which would counter the role of the Nadolol to lower blood pressure in order  to prevent bleeding from the varices.  She did not say that exercise for PH patients was a bad thing at all, but that it should be moderate in nature.  She suggested walking as a good alternative to an intense cardiovascular workout such as running or aerobics.

Audra also asked will esophageal varices continue to develop after several bandings, or will they eventually be completely eradicated?  Unfortunately the answer to this question is something none of us really want to hear.  Yes varices will develop after banding, and no the varices sometimes will not be completely eradicated!   (These very same questions had crossed by mind and I know many of you also).  In the event that patients (myself included) who are on high dosages of anti-coagulants and evasive measure are taken to band the varices after a bleed, there is the added risk that bleeding would not stop from the site where the varices were removed.  When the varices “slough off” after banding there would remain ulceration and this is where the bleeding would likely continue.

Cheryle sent me an article from The New England Journal of Medicine in turn that her own doctor from the Mayo clinic had originally sent her. The article entitled Mesenteric Venous Thrombosis primarily deals with the subject of “onset pain”, but really does not deal with the condition of “chronic pain” as associated with PVT.  Cheryl wanted to know how doctors are treating patients with chronic pain associated with Portal Vein Thrombosis and it associated side effects.  Well, I am sorry to report that my doctor did not shed much light on this subject, but only stated that this type of pain is extremely challenging to treat because of it being vascular in nature.   I know of more than one person who I have met since I started this blog, who are on Fentanyl patches to combat the pain.  Fentanyl is normally used for breakthrough cancer pain, and it is considered to be one of the highest forms of prescription medication one can take to combat pain.  From personal experience, when I get onset pain my prescribed medication (Codeine) and a few other “natural remedies” help a little to take the edge off.  Codeine is an opiate used for its analgesic, antitussive, and antidiarrheal  properties. In prior posts I have mentioned that soaking in a warm tub, taking a few drops of  Oil of Peppermint along with  honey in a cup of warm water, plus  the pain medication can help soothe  the pain.  When the pain is severe enough though,  nothing can touch it, so unfortunately I usually have to ride it out until it subsides.  I know this is not the case for many of you, and my heart goes out to you … just wish I had more answers?

Cheryl (not the same Cheryle as the above) wondered  how long it would actually take for varices to develop?   Unfortunately my doctor stated that the time frame was short and that varices could develop within weeks.  On a side note, Cheryl has herself been referred by her own doctor to my doctor here at the University of Alberta in Edmonton.   As with many of us Cheryl also has endured much, and in many ways her condition is extenuated by the fact that she also suffers from Lupus. For Cheryl’s sake I sincerely hope she gets more answers concerning her individual health needs and I pray that her condition will continue to improve in all respects!

As I was writing this post, I was reminded again with a sense that this information is not at all positive for many of you.   No one  likes to be the bearer of bad news, but by sharing this information I want to remind you again that you are not alone.   It is very easy to get down about the realities of this illness – I’ve been there!  In my next post I will update you on my prognosis, but at the same time  I also want to share at little more about “the hope that is within me”.  That hope keeps me going despite the hard realities of what can happen when one has a dangerous condition such as portal hypertension.

Until next time,

Clint