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The Road to My TransplantMarch 06 March 2008 UpdateThings are getting better lately.
Saw my Primary Care Physician at the end of February and had my pain medication changed to Morphine Sulfate. It is a long lasting version of the pain med, which means I only take it twice a day. Had some problems with "break through" pain (pain that is sudden onset and is not relieved by the long lasting med).
On the 6th of March I saw him again for this pain and was placed on a fast acting version that I take every 4 hours if needed. As usual I had problems with this med also. Since it is a syrup it acts almost immediately and on the first day I took it I took to much and had a slight overdose reaction. I spent that night up suffering from nausea and vomiting. I am much better now and don't have the "break through" pain. In fact, most of my pain has subsided.
I was initially concerned about the possibility of becoming addicted to the Morphine, but as Virginia explained, I will probably be on this for the rest of my life so I shouldn't be concerned with any addiction. And, as I look at it realistically, as long as the pain is gone and my quality of life is improving, that IS the desired effect.
I have been approved for Medicare Part A and B, but not until July 2008. I will be contacting UCLA for a transplant evaluation at that time. In the meantime I will have another CT at the end of March and an EGD some time soon to find out why I am having difficulty eating. As usual I will keep everyone informed as to the results.
Well, thats about all that is new now. Thanks to everyone who is praying for me. I really appreciate your thoughts. January 23 Janurary 23, 2008 UpdateWell it has been an interesting month. My health has gone up and down. Let me explain.
Just after Thanksgiving I suffered a bout of Hepatic Encephalopathy. This is a neuropsychiatric syndrome due to liver disease and usually associated with portal-systemic shunting of venous blood. It manifests itself with personality changes (eg, inappropriate behavior, altered mood and impaired judgment). Encephalopathy due to chronic liver disease usually responds to treatment, especially if the precipitating cause is reversible. In most such cases the syndrome completely regresses without permanent neurologic sequelae.
My case manifested itself with complete coma-state reaction for a period of 3 - 5 days. I say 3 -5 days because I have had 3 episodes in the last 2 months. My physician of record has placed me on Lactolose in an effort to clear my thinking and the pathogen causing the problems.
As I am writing this it is apparent that my symptoms are clearing and the Lactolose is working. We'll keep an eye on the situation.
During one episode my Blood Sugar dropped to 20 meq. As I am diabetic this was life threatening. Another item to watch closely.
Well, that's the latest from the front. I will inform you of any further changes. December 21 December 21 UpdateWell, it's been a very trying four weeks. Where do I begin.
I guess we'll start with Medicare. I made several telephone calls to the SSA in an attempt to have my Part B reinstated. After several calls, emails and visits to the SSA I was told that I needed to get approved for Medicaid first. So, off to the county welfare department for approval. There I was met with disdain and ridicule. I was, not so politely informed that Medicaid was a welfare program and, since I had a good income, it was inappropriate for me to even consider applying. I told the agent that I was there at the request of SSA and that with a Master's in Health Administration, I was fully aware of what Medicaid was. To say the least, I was denied.
I returned to SSA and was questioned as to why I went to Medicaid. I will not go into the resulting conversation. I was, however, told that I would have to wait until Open Enrollment started to reapply for Part B. And that coverage would not begin until July 01, 2008.
I tell this story because of the following story. UCLA has informed me that once I have Part B they would be happy to do a consultation. When I informed them of the above story they agreed to accept any lab test or x-rays from the VA, but that I would have to pay out of my own pocket for the actual visit. This is actually very kind of them as it will save me quite a few dollars. I am still waiting for them to inform me of the consultation costs.
In the meantime Dr. Morgan has placed me on two medications. The first is SORAFENIB 200MG TAB. This is a chemotherapy drug. (please follow the link for information http://www.cancer.gov/clinicaltrials/results/sorafenib-liver0607 ). It is supposed to inhibit the growth of blood supply to the tumor. The other is DOXYCYCLINE HYCLATE 100MG CAP. This is an antibiotic that, in one study has shown the same properties. I have started the Doxcycline but not the Sorafenib. Seems that Sorafenib costs $5000.00 a month and I assume the VA is getting approval for use of the drug.
Well, there we are. The very short and sweet of it. Virginia and I thank everyone for their prayers. We know that I am in the hands of our Lord. And, personally, I know that my Patron, Our Blessed Mother is caring for me as alway.
More later November 28 November 28 updateGot call from Dr. Morgan. I have been denied a Liver Transplant by Portland VA. He will be contacting DofVA in Washington D.C. and requesting a review of my case and possible transplant at another VA Transplant Facility. This will take 2-3 months time before any possible answer. He also wants me to contact UCLA and check on their criteria, to be paid by Medicare.
Keep my family in your prayers. It looks like there are some trying times ahead. November 08 November 08 UpdateGot my first follow up CT Scan. Prescan lab work was very good with AFP at 1000% (yes, one thousand percent) lower than pretreatment AFP. The scan itself showed nothing new in liver or abdomen. We are taking this as a good sign but will not totally celebrate until after 2nd or 3rd f/u scan.
Experiencing severe abdominal pain each night which is playing havoc with my sleep cycle, but expect this to disapate soon.
Will keep everyone updated. |
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