And I said to the man who stood at the gate of the year: “Give me a light that I may tread safely into the unknown.” And he replied: “Go out into the darkness and put your hand into the Hand of God. That shall be to you better than light and safer than a known way.”– Minnie L. Haskins
Being just a few weeks into another new year, undoubtedly many of us or those we love will face new challenges relating to portal hypertension (PH) and its subsequent side effects. If you have recently been diagnosed with PH or have lived with the condition for a number of years now, the related stresses of the unknown can be very disconcerting. On a broader scale but not exactly related, we may also be facing additional anxiety in areas relating to our finances, relationships, or quite possibly we could be suffering the loss of a loved one. Our world is being stressed also, and on almost a daily basis we hear about the tragic effects of war, famine, severe weather, economic turmoil and human injustice on unparalleled levels.
Although tragedy and stress abound everywhere by no means would I ever say 2012 was an exception, however all was not “doom and gloom” as you might agree. Maybe you celebrated the birth of a baby in your family and all the joy that new life brings. You might also have had the chance to commemorate a graduation, wedding, anniversary, new job, a restored relationship or maybe you are into the beginnings of a new relationship. If you have had a breakthrough or a complete restoration on your own health or that of a loved one this too is cause for great celebration. All of these “milestones” can bring joy in the midst of a world seemingly gone wrong. Looking ahead into this new year, my greatest desire for you is that you are able to enjoy many more happy occasions, but also that you may find true peace at those times when things don’t always seem to go well.
As I have reiterated in prior posts, my intentions in writing this blog have never changed, so I continue to seek out new research, try to decipher it, and in turn share it with you. Secondly, and I know this sounds rather redundant, but I want to provide a forum where others can post their own stories. Since starting this project a few years ago, I have had the privilege of replying to over 700 comments so I want to thank all those who have contributed in that manner. Those same folks have taught me a lot and have called into question some of the standard treatment protocols, all the while taking into account that each of us are genetically different and we can respond in various manners. Having said that, it is important to note that there is a commonality in the overall care of PH patients, and for the most part those include medications such as blood thinners for obvious reasons, and beta blockers to slow the heart rate down.
I can say that I have seen what I would call only minor progression in the treatment of PH, and to date I think it would be safe to surmise that there have been no major breakthroughs except for the evasive measures of the Rex Shunt procedure and other rare surgical interventions in the last decade which seem to work best on younger children. The fact that the condition is still relatively rare means that not many research dollars are directed to the condition, and another contributing factor is likely due to the face that there is very low media awareness. Except for raising funds on an individual basis, the challenge to set up and maintain a charity association whereby those that need funds can utilize this resource as need be, seems to be far from reach. Taking nothing away though from the few I know who have been successful on even a small scale at raising funds to help parents with children, my hat really goes off to you.
On a personal level I always look for inspiration that I can share with others, or apply to my own life. I understand the challenges of PH having lived with the condition over a decade now, not to mention a recent associated health scare back in the later part of August 2012. On another level I also experienced the passing of my own mother in the later part of October. Mom had not been well for many years, so in many way it is a blessing she no longer has to suffer, however the void is there as I miss her and am constantly reminded of her as I carry on despite this loss. I have also experienced joy this past year, with our son’s graduation from high school, and many other less significant things which were all cause for celebration. If you have read some of my posts on this blog, you may have realized, that I have talked about faith being an important part of my life. Overall I know the peace of God in my life, and with all the setbacks (and ‘yes’ joys) of this last year, I just carry on in faith that He will see me through. For you the reader, whatever you are going through at this time, I count it a privilege to pray for you, and at the very least offer a listening ear to what you may be facing at this time.
All the best in 2013,
Click here for prior post: http://www.portal-hypertension.com/a-personal-medical-update-new-terminology
This post is exactly what I needed this morning. You have brought together so many people and resources, you are amazing.
Thank you for all you have done and continued to do.
Tracie Hodgson (Aidan’s Mom)
Think of you often. In your case I can only empathize from afar in the most minute way, and I can’t even imagine how you feel at times. Please know that I do care, and be assured there are others out there who care also – this is a fact!
As always, very well written Clint. I am not one who’s words are easily expressed. You on the other hand, have a natural way with writing and expressing which goes to show God is using you just as He has planned. First I would like to say, I can only hope to have your peace one day. I will be the first to say I am not quite to the peace and acceptance stage. Although I pray everyday, I am still working through the many emotions of our new reality. I hope with time I may be more accepting and find my peace. As you, I trust that the Lord has a plan for us and try very hard throughout each and everyday to accept this path. So secondly, I say thank you. Thank you for the hope that like you, one day I will be ok with this life. Thank you for showing me that my son can have the chance for 10 years plus to live with this life you both share and live with daily. And finally thank you for the reminder to also remeber the joys in our lives.
I’m touched by your kind words. In the past few months I have detected your uneasiness through the words you have written on Facebook. It has caused me to be even more cautious in what I say, as circumstances can change and cause us to examine other alternatives that we always hope/pray will work. The stress level I believe can be very high for a parent of a child who is sick, so I believe accepting reality is much harder to come by.
I am blessed to be here still, but I also want to tell you that I know of a few others who I have met through this blog, and are not on the Facebook pages, that have survived for many more years besides me. A fellow I know who lives in Minnesota, has contended with PH since the age of 19 and he just celebrated his 50th birthday a few months ago. He has had some major bleeds, and unlike me his liver is slowly deteriorating so he may have to have a liver transplant at some point. He has 5 children and he recently had to accept the fact that he could no longer work because of his side-effects. I Skype with him occasionally and he shares his frustrations, but also we are able to have a laugh every now and again which helps both me and him. Last year he went to Chicago to see Dr. S, but was given news that they could not perform the Rex or any other procedure on him because of the progression. I say all of the above in the sincere hope that it is another story to encourage you and to remind you that you and “K” are still in my thoughts and prayers.
“Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.” Ephesians 3:20
Hang in there Kelly!
Great article Clint,
I was diagnosed with PH in ’06 and I am very fortunate to be alive today, but the struggle continues daily, and your read helps a lot. Love & Light my friend
God a few days ago showed me I was looking at my blood disease, Antiphospolipid Lupus Antibody. I really needed to look and startv studdying what happened in 2004. I had a portal vein thrombosis, I lost 18 inches in my bowel and part of my stomach. I have been told until last year the clot was gone ……It has various over top for the blood flow.
I am so scared I live in a small town in Virginia. I have been seeing a
I am typing on my phone so I think lines are agter this . Do u know of a majorhospital I could go. To see a Dr. I don’t kjow what to ask for or questions I am at a loss if u could email me I would greatlyvappreciaye.
hematologist , I am on lovnox twice a day. I also see a General Practioner but he treats my fibro. I have had pain since I had the first pvt. My pain has increased . I have made a appointment with a gastrologist. I am praying he can help. What really scares me all I ever recieve is u shouldn’t be here.
Clint, is a blessing to find this blog. my daughter of 5 years, HP was diagnosed and had two hemorrhages.
are from Central America, Honduras, we are waiting for help from a hospital in USA.
Please give more contact children’s Hospital in Boston.
Your blog is like a life preserver for those who feel that we sink into the sea of HP.
my email is email@example.com