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 →
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).
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 TheNew 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.