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).
hi Clint i am so sorry it took me this long to response to this post. THANK YOU ….. Joey just had a liver biopsy a few days ago we dont know what the results are & scope for his varicies. actually we are planing to visit Dr Superina aug 23. We just found this news out today & it hit home, I have so many questions & I get so confused but my son & my family are holding it together & with Faith we will pull threw. I will keep you informed and i will send my prayers ur way also. And Thank you xo
Although the date for Joey’s visit is several weeks away – I will keep him in my prayers. If you remember – please let me know how everything goes for him and what the decision is? Thanks for your prayers regarding my health. I was going to get an update posted, but have had some hurdles lately and it has caused me to rethink what I wanted to post. There is so much to learn regarding Portal Hypertension that I feel I have only touched the surface sometimes.