Ltl Doc's profileThe Road to My Transplan...PhotosBlogListsMore  |  Tools Help |
|
March 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. October 12 12 October UpdateFinished the treatments on Wednesday, 10 October. Spent an extra day in Portland just incase of side effects. Everything went well and I'm feeling pretty good.
Was visitied by my old Master Chief and a very good friend. They were checking up on me and seeing if I needed anything.
On the was home today at about 1300 and should be in the safety of my own home by about 1600. Looking forward to that.
October 07 October 7 UpdateHad the 3rd treatment on Friday. Had a good night that evening but developed high fever and naseua on Saturday. Pretty much stayed in bed.
Went on tour of wilderness areas with Virginia today. Oregon is very beautiful, especially the Colombia Gorge area. Started feeling ill when we got back. Same thing.
Have 4th treatment tomorrow instead of Tuesday. I'll let the Oncologist know about side effects.
Another entry tomorrow or Tuesday. October 05 Update 10/05/07Had second treatment on the 3rd of October. The treatment went well but had a little difficulty on the 4th. Developed a fever, upset stomach and some limited pain.
Everthing is well today and I will be going in for 3rd treatment this afternoon. October 02 October 02 UpdateWell, we got to Portland, Oregon yesterday (10/01/07) and started the Stereotactic Body Radiation Thereapy (SBRT) in the afternoon. Everything went well and I am feeling good. I will repeat the procedure tomorrow (10/3/07) and Friday (10/05/07) for this week and will do it again on Tuesday and Thrusday of next week.
I will keep everyone in formed. September 21 September 21 UpdateOK, back from Portland on the 19th. Needed a day or two to rest. To much flying. The mold is made and started the wait for radiation treatment. The wait wasn't long. Got the call today for scheduled appointments.
I will travel again to Portland on either the 30th of Sept or the very early morning hours of the 1st of Oct. Appointments are all at 1515 on the 1st, 3rd, 5th, 9th and 11th. Should fly back home on the 12th. Let's all pray that this works and I can get back on the list. September 14 Update 9/14/2007OK, so I’m a liar. But I do have a fairly good excuse. Since my last posting I have undergone several different procedures in an effort to get the transplant. In August I went to Portland and in September I returned.
The August trip was so the transplant team could do a more definitive CT Scan. This scan showed continued growth of the tumors. It was determined that the RFA’s were not effective and the radiologists in Portland felt that I would benefit from a Chemotherapy Embolism.
This is a therapy treatment by which a catheter is threaded up the femoral artery into on of the major veins of the liver. The catheter is slowly threaded to the tumor site and a massive amount of a very toxic chemotherapy drug is injected. The procedure takes about an hour to complete. Mine took four hours. This was followed by another CT Scan.
The scan showed continued growth of the primary tumor and development of another tumor.
It is at this point that many transplant teams declare the situation inoperable and remove the patient from the transplant list. However, the University of Oregon has a new procedure called Stereotactic Body Radiation Therapy or SBRT. “Radiation therapy is the treatment of cancer using high levels of X-ray energy that can be delivered to tumors with customized treatments created for each patient. Stereotactic radiation therapy that utilizes 3-D imaging and gamma ray treatments has been successfully used for brain treatments for several decades and over 5,000 brain treatments have been delivered at UVA alone.
With this new application, SBRT, similar principles apply. Patients can have small tumors accurately identified and located within their body with precise coordinates. Using computerized planning, doctors can deliver high-energy x-ray beams precisely to the tumor targets though out the body.” The radiation oncologist feels that he can completely eradicate the tumors that are present and get me eligible for the transplant list again. We will be starting this procedure on 18 September 2007. At that time I will try to keep everyone updated as to my progress.
For those that wish to read about SBRT go to this web site:
http://www.healthsystem.virginia.edu/internet/news/archives07/SBRT.cfm .
June 11 Long overdue update - June 2007Well, it’s been quite a while since my last update. There are several reasons, but the main reason is pure laziness. OK, let’s get started.
Had my first RFA in April 2007. It went fairly well. In order for the radiologist to get to the tumor he needed to create a pneumothorax. It was not pleasant and was fairly painful. I had problems with deep breathing, but the problem and pain subsided after about two weeks.
Unfortunately the radiologist did not get the entire tumor, so in May 2007 they performed another RFA. This went much better but I have yet to be scheduled another CT scan so I don’t know the results yet.
I am feeling very good and I am in no pain. I will let you know when and the results of the next CT scan.
Thanks for all your emails and calls. I promise to do better on keeping this updated. March 27 Update 3/27/07Well, it appears that I am still at the mercy of physicians. The interventional radiologist who is to do my upcoming RFA will be on vacation the first week of April. So, to accommodate his schedule I will be doing my pro-operative interview tomorrow 3/28/07 and have the procedure the morning of 3/30/07. This is not an outpatient procedure as I had thought. I will spend at least one night in the hospital, with a discharge date of 04/01/07 (great day) or 04/02/07.
I promise to keep everyone appraised of the situation and expect to update the blog as soon as I get back from the pre-op interview. March 22 Update 3/21/07Had an appointment with Dr. Morgan on Monday, March 22, 2007. At that time the AFP (alpha-fetoprotein – a liver cancer marker) was extremely high. Here are the results from previous tests: 09/19/2006 115.9 (High) 12/19/2006 296.6 (High) 02/12/2007 589.9 (High) 03/20/2007 2323.9 (High) As of March 22, 2007 we are still waiting for Portland VA to determine if I am eligible for a transplant. They are concerned with the size of the tumor and the fact that I smoked cigars. This has prompted a new course of action that may be a local curative to the Hepatic Carcinoma Cancer (HCC). We will attempt Radiofrequency Ablation (RFA) therapy. This is an invasive treatment in which “dielectric heating caused by radiofrequency waves in the region around the electrode inserted in a lesion fully coagulates and necrotizes liver tumors. RFA uses an expandable or cool-tip electrode needle, and single coagulation is able to necrotize a total area of about 3 cm. Accordingly, curative ablation for a tumor measuring 2.5 cm or less can be completed with a single treatment session. The current indications are three or fewer tumors measuring 3 cm or less, or a solitary tumor with a major axis of 5 cm or less. However, there is no clear evidence whether curative ablation can be obtained for hypervascular hepatocellular carcinoma larger than 3 cm. Because local occlusion of hepatic blood flow, using a balloon or transcatheter arterial embolization (TAE), increases the coagulated area in RFA, this combination has been favorably used”. (The above is quoted from the Journal of Gastroenterology, 2004) I have a pre-operative consult on April 02, 2007 at which time final determination of the size of the tumor and ultimate therapeutic care will be determined. Stay tuned, things look like they are finally moving forward. February 27 Update 2/27/2007Again, I am late in doing my posting. What can I say, I’m old and lazy. Since the MRI was inconclusive I had another CT done a week later. This also proved to be fairly inconclusive. Seems the shunt is getting in the way of all the pictures. There was one problem and that was probably due to having such large amounts of contrast close together. My feet swelled to look like “hobbit” feet. It was painful and I was unable to really get around for a few days. Got word today (02/27/07) that my case has been reviewed here in the VA Long Beach and my films and paperwork is being submitted to the VA Portland. Hopefully we will get some feed back from them shortly. That’s about it for now. All we can do is sit and wait. February 07 MRI ResultsI apologize for not keeping up with this but I have been waiting for the results of the MRI. Had the MRI on 01/31/07 and just today 02/07/07 got the “results”. Here is what the radiologist had to say: “Because of technical limitations, the masses are not as well marginated as on CT, so they appear to be one ill-defined area which measures between 2 and 3 cm.” Now I am no physician (regardless what my Marines say) but I read this to say that they can only see one mass 2 – 3 cm in size. The “technical limitations” he mentions is the shunt placed internally when I had the Porto-Caval Shunt procedure back in 1998. I have asked Dr. Morgan to determine what the next step will be, but I feel strongly that a follow-up CT is in order to determine the possible growth of the mass(es). As for the Echocardiogram, that came out just fine. For now I am just waiting for the Pulmonary Function Test (PFT). January 31 MRI DoneHad the MRI this morning and everything went well. I was told that the films would for forwarded to the VA this afternoon with next day delivery, so hopefully the Radiologist will be able to read them tomorrow. Now I go for the Echocardiogram, tomorrow, and a Pulmonary Function Test on the 12th. As soon as I hear from Dr. Morgan I will post the results of the MRI. January 26 Finally, an MRIIt’s been a few days, but they’ve been very fulfilling days. I finally got a date for the MRI. It is scheduled for January 31, 2007 and will be done at a private MRI facility in Tustin, CA. It is scheduled for 9:00 am, another “nothing to eat after midnight until afterwards” examination. Got an email from my Dr. Morgan telling me that the Nuclear Stress test was good and that things are on track for the transplant. I have been getting a lot of emails from friends and family (due to the mass email I sent). It really does my heart good to know so many have my “six”. Many are at a loss, not knowing what they can do. I’ll be honest, there really isn’t much. Just email me occasionally and keep my wife and two step-daughters in your prayers. Those three are the most important women (other than my mom) in my life and I do worry about their well-being. Well, it’s late (early, your own perspective) so I’m signing off for now. I’ll post more latter. January 23 Nuclear stress testWent for the Nuclear Medicine stress test yesterday. Of course they wouldn’t tell me anything other than to talk with my Dr. I was up at 4:00 am and on the road to the Long Beach, CA VA Hospital at 5:00 am. Traffic was a bear and I got there 15 minutes late. They took their time and at about 8:30 am I got the indwelling catheter inserted and was injected with the nuclear contrast. About another half an hour later they did the scan with my heart at rest. The tech let me look at the pictures (pretty fantastic) but would say nothing about it. Then the wait started. At about 10:00 am they did a baseline ECG and injected me with the stressing agent. Got an immediate pounding headache, but nothing more. Then more waiting. About 45 min later went back for another scan with my heart stressing. I wanted to look at the pictures but my head was pounding so bad I just left. It’s a good thing Virginia came along with me as I was totally unable to drive.
When I got home I went immediately to bed and slept for about 4 hours. The headache was still there when I awoke and stayed with me until I went to bed at midnight.
Overall, not a fun experience. Still waiting for the MRI to be scheduled and found out that the Nurse Practitioner who is the transplant coordinator will be out of the office for the week. I find it amazing that my Dr. puts such emphasis on this test, yet the VA is slow in scheduling it. I guess that’s the price you for serving your country.
Next is the Echocardiogram on the 1st of February. Onward and upward. January 17 More TestsNotified by the VA Long Beach of additional tests necessary for the transplant.
On January 22 I will get a Thallium Stress test. The American Heart Association describes this test in the following manner:
This is a type of nuclear scanning test or myocardial perfusion (mi"o-KAR'de-al per-FU'zhun) imaging test. It shows how well blood flows to the heart muscle. It's usually done along with an exercise stress test on a treadmill or bicycle. The thallium stress test is useful to determine:
When the patient reaches his or her maximum level of exercise, a small amount of a radioactive substance called thallium is injected into the bloodstream. Then the patient lies down on a special table under a camera ("gamma camera") that can see the thallium and make pictures. The thallium mixes with the blood in the bloodstream and heart's arteries and enters heart muscle cells. If a part of the heart muscle doesn't receive a normal blood supply, less than a normal amount of thallium will be in those heart muscle cells. The first pictures are made shortly after the exercise test and show blood flow to the heart during exercise. The heart is "stressed" during the exercise test -- thus the name "stress test." The patient then lies quietly for 2-3 hours and another series of pictures is made. These show blood flow to the heart muscle during rest. What does the thallium stress test show?
Additionally, on February 12 I am scheduled for a Pulmonary Function Test. This test is described by MedLinePlus in the following manner:
Pulmonary function tests are a broad range of tests that are usually done in a health care provider's office or a specialized facility. They measure how well the lungs take in and exhale air and how efficiently they transfer oxygen into the blood. Spirometry measures how well the lungs exhale. The information gathered during this test is useful in diagnosing certain types of lung disorders, but is most useful when assessing for obstructive lung diseases (especially asthma and chronic obstructive pulmonary disease, COPD). Lung volume measurement detects restrictive lung diseases. In this set of diseases, a person cannot inhale a normal volume of air. Restrictive lung diseases may be caused by inflammation or scarring of the lung tissue (interstitial lung disease) or by abnormalities of the muscles or skeleton of the chest wall. Testing the diffusion capacity (also called the DLCO) permits an estimate of how efficiently the lungs transfer oxygen from the air into the bloodstream. How the test is performed In a spirometry test, a person breathes into mouthpiece that is connected to an instrument called a spirometer. The spirometer records the amount and the rate of air that is breathed in and out over a specified time. Some of the test measurements are obtained by normal, quiet breathing, and other tests require forced inhalation or exhalation after a deep breath.
|
|
|
