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).
My varices have receeded. I wish the same for you.
Thanks Judith … very good news regarding your varices. Apparently I have the varices of a stubborn variety! 🙂
Last November I was hospitalized for varices bleeding (again). Since 2008, had no bleeding complications. In 2008 my gastroenterologist also described me as a time bomb, and I am still giving my battle. Although I do not deny that sometimes I’ve lost faith, but always the Lord lets me know that he is with me. Thanks for your post. God bless you.
Thank you for your post! Praying God’s best for you also!
Thank you for your post Maria! God bless you also!
Your story is so encouraging … we need to simply just keep trusting. I am glad you are reminded that the Lord lets you know He is with you! It is sometimes easy to forget and lose faith (I’ve been there also). I was reminded just now of a scripture that says, “But I trust in you, LORD; I say, You are my God. My times are in your hands”. This passage is found in Psalms 31:14,15. God know our future and he knows the number of our days, and for reasons mostly unexplainable He allows suffering and pain. In light of eternity though, and what is in store for those who have trusted Him, we will be totally free from all of this someday. In the meantime … as above, we simply just have to trust Him!
Thanks for the update Clint. What you have written has really hit home. I am scheduled for a surveillance scope to check for any more esophageal varices in late April. I hope I don’t need any more banding. If I do, I will simply continue to live my life to the fullest as best I can. Connecting with people is very helpful. May God be with you.
Audra
Wow what a website, Clint. Gives us a better understanding of your trial through this. Will keep praying for you. I have just read the book HEAVEN IS FOR REAL. What an awesome account of an experience a 4 yr old pastor’s son had with heaven. Haven Today is supporting the book because of their knowledge of the family represented. Will look for you at church again soon – and need to read more about your condition also!
Heather “O”
Dear Clint, my mother has been suffering from portal Hypertension for the past 4 years. she is a trooper that I can say, we’ve had some close calls but she she has a strong faith in GOD and I believe that’s what keeps her going, and the reason why she still with us. U will be in our prayers stay strong and please keep my mother MARIA MARTINEZ in yours…GOD BLESS!!!
Carolina,
Great story … thanks for sharing. What medication and doctor’s can’t do, we can do by offering encouragement and prayer for others suffering from Portal Hypertension! For your Mom MARIA, and the many others who visit this blog seeking answers – I certainly do pray for them. Thank you for blessing me, and I am sure many others out there who take encouragement from your Mom’s story! Here is a video clip I took encouragement from today: http://www.youtube.com/watch?v=9hzYKovRsJ8 Blessings to you also!
Good to talk to you today, Clint. God bless — we’ll pray for you!
Hi Ross,
Thank you for your post! It was great to see you today also. Appreciate the work you are doing “north of 16” in the Agricola community! Also appreciate your prayers!
Best, Clint
HI .. While reading your post i started to cry, this is what my 11 year old son has & i pray for you… the doctors said the same thing to us.. there is nothing we can do for you he cant get a shunt now we see the Gi doctors every two weeks but he cant go to school. i live in fear everyday if he walks wrong or coughs too hard tor even falls he will bleed out,he has esophageal varices also. i am looking for other doctors now to look at him. we just found this out about 1 month ago & its hard. I am so sorry you are going threw this.. i will pray… reading this has helped me understand more then the doctors told us… THANK YOU…
Loretta, I am always saddened to hear of a child going through this, but I want to offer you some encouragement regarding such. Through this blog I have met people who have had the condition for many years, and some of those have had it since childhood. Although there does not seem to be a cure, it is treatable with the right medications. I do not have averages for long term prognosis, but I would say it all depends on what other complications a person may have which can play into the situation. One gal I know has had this since birth, and she is now 31 years old. Another fellow who is in his 40’s now has had it since being a teenager and although he has had some episodes he is still doing realatively fine. As for me, I have had this since it was detected in 2002 – so that is coming up 10 years already. No one knows (except God Himself) what the future holds, but I think it is important to know that there is ongoing research and there is a general consensus amongst doctors worldwide as to the treatment protocol. One last thing … I am sure you have turned over every stone by now looking for answers, but have you contacted Dr. Superina or any other specialist regarding the Rex Shunt Procedure? There is a list posted on this blog if you would like to contact someone?
Please keep me in the loop and if there is anything else I can do besides pray I will gladly try to answer your questions.
Kindest regards, Clint