Today I had my liver clinic appointment. This happens every few months to check on my health, diet, moods and basically my physical and mental status. As we were ready to wrap things up I confided that I have been a bit overwhelmed with all that has happened in the last month or so. I suddenly found myself choking back tears and realized just how much of an emotional roller coaster I have been on. As we talked, tears started to fall. I had no idea how much I have been holding in. I was reminded that it has almost been 4 years since this began. The fact that I was still holding it together and still working was by their standards pretty amazing and the transplant team recognized this. They ask me this question at every clinic, "Are you still working?" I tell them yes and they always give me a wow. "That's great."
I left clinic feeling a bit spent. I was somewhat moved by the experience I had just had and I realized how easy it is to ignore some of the things in life when maybe we should be embracing them. I think I have a lot to work through, but I am grateful that I recognize it.
Sleep well, everybody.
Thursday, January 26, 2012
Tuesday, January 24, 2012
Happy Birthday to Me
No cancer! The doctor wasn't able to take a biopsy though because he couldn't reach it. He did feel comfortable enough to say he didn't think it was anything. I was out for quite a while and was very groggy waking up. Lois and I celebrated by going home and taking a nap. We decided to hit the local rec center later and went to soak our tired bodies in the hot tub. I started feeling really sick after about 15 minutes. I don't know if it was the hot water or what, but I was very nauseous.
I am happy with the news.
Monday, January 23, 2012
Pins and Needles
I have my Endoscopic Ultrasound tomorrow. Hopefully I will learn what I need to know before I go home. I understand that if it doesn't look threatening, than the doctor will be able to tell me right then. But, if they have to do a biopsy I may have to wait another week.
This past week has moved by slowly. Once again we have been on pins and needles. Waiting to have this test done kept us on edge for three weeks and when it was cancelled I still felt it wasn't over. That nagging feeling proved right when my coordinator called later in the week only to tell us that there had been an awful mistake and that we would have to take the test after all. We have had to wait another 11 days and I have allowed myself to feel disconnected. I am certain that it has been some protective mechanism to keep me from going insane. The test results teeter between devastating and miraculous news. I will know when I see the expression on Lois' face. I am looking forward to seeing a bright smile.
This past week has moved by slowly. Once again we have been on pins and needles. Waiting to have this test done kept us on edge for three weeks and when it was cancelled I still felt it wasn't over. That nagging feeling proved right when my coordinator called later in the week only to tell us that there had been an awful mistake and that we would have to take the test after all. We have had to wait another 11 days and I have allowed myself to feel disconnected. I am certain that it has been some protective mechanism to keep me from going insane. The test results teeter between devastating and miraculous news. I will know when I see the expression on Lois' face. I am looking forward to seeing a bright smile.
Friday, January 13, 2012
Looks like we're going to have to do this thing after all.
The cancelled test is back on the calendar. Cancel the all-clear on the pancreatic question.
Oh, that's right. The hospital cancelled the all-clear.
I was never very comfortable with this EUS (Endoscopic Ultra Sound) cancellation. I had even pressed my transplant coordinator as to what the deal was. For instance, there was a conversation between the EUS specialist and one of my other transplant doctors discussing my CT scans and they agreed that the findings didn't warrant any further testing. But the transplant doctor I usually see was sure we should be certain. I found myself wanting a definitive answer, but Lois was just happy it wasn't pancreatic cancer. And after we discussed it, we decided we'd feel blessed and move on.
Not so fast. The transplant coordinator called yesterday, but we were out getting Jeni a kitten. Today, she finally reached me with the news: The radiologist who decided we didn't need the specialized test we waited three weeks for had not actually seen the right CT report. The decision was based on incomplete information. When the coordinator tried to track down how the entire thing came about, the original transplant doctor who wanted the scan done had a Eureka! moment and suggested they weren't considering the complete report.
He nailed it.
So, this time, we only wait 11 more days because they decided to get us in "right away."
It's slated for my birthday. I'll either get a really great present -- a cancer all clear -- or it will be a birthday I never forget. For all the wrong reasons.
Lois cried. I'm actually kind of relieved. Not that she cried, but because now we'll know.
Oh, that's right. The hospital cancelled the all-clear.
I was never very comfortable with this EUS (Endoscopic Ultra Sound) cancellation. I had even pressed my transplant coordinator as to what the deal was. For instance, there was a conversation between the EUS specialist and one of my other transplant doctors discussing my CT scans and they agreed that the findings didn't warrant any further testing. But the transplant doctor I usually see was sure we should be certain. I found myself wanting a definitive answer, but Lois was just happy it wasn't pancreatic cancer. And after we discussed it, we decided we'd feel blessed and move on.
Not so fast. The transplant coordinator called yesterday, but we were out getting Jeni a kitten. Today, she finally reached me with the news: The radiologist who decided we didn't need the specialized test we waited three weeks for had not actually seen the right CT report. The decision was based on incomplete information. When the coordinator tried to track down how the entire thing came about, the original transplant doctor who wanted the scan done had a Eureka! moment and suggested they weren't considering the complete report.
He nailed it.
So, this time, we only wait 11 more days because they decided to get us in "right away."
It's slated for my birthday. I'll either get a really great present -- a cancer all clear -- or it will be a birthday I never forget. For all the wrong reasons.
Lois cried. I'm actually kind of relieved. Not that she cried, but because now we'll know.
Wednesday, January 11, 2012
1/11/2012
After three weeks of worrying about this spot on my CT scan, I was informed that the procedure had been cancelled. The specialist reviewed my scans and said he didn't see any need to do it because it would be a waste of time and money. They are all but certain it's not cancerous. I was a bit shocked, but I'll take it. I only wish the doctor would have reviewed these scans earlier and saved me some grief. Needless to say, we are all excited about this recent development. I also learned yesterday that my MELD score went back up the night I spent in the hospital. It is now 22.
Today I looked at the UNOS website and found out that I am now among the top ten people listed at my transplant center. There are 2 people in the highest category and 8 in mine. This brought me chills. It is both exciting and frightening. Suddenly everything seems surreal.
Wednesday, January 4, 2012
The Calm Before The Storm
Yesterday I experienced one of the worst days of my life. I pray that it never happens again:
I am looking through my family's eyes and I shrink in abhorrence. I see fear and sadness. There is also forgiveness and even a few laughs. Nonetheless, my yesterday resulted in a ride to the hospital in the back of an ambulance that has forever changed my perspective of hepatic encephalopathy. The ambulance crew had to rehydrate me on the way to the hospital and I spent the night drinking Lactulose. As some may remember, Lactulose is the medicine that expels the ammonia from the body by diarrhea. When the liver can no longer do it on its own, the ammonia finds its way to the brain and you experience certain mood swings. There can be hallucination and disorientation and perhaps the worst one is being argumentative. I get that way. I had slipped beyond the sane to the insane.
I had turned argumentative and yelled at Lois as she tried to get me to drink some Lactulose. She could see what was happening to me. I was lashing out and sweeping things off the shelves. Later, as I tossed and turned throughout the night at the hospital, recollection came back in bits and pieces. At on point I had a sort of tunnel vision of my oldest standing far away with a look of panic. Last night I learned what real fear looked like. It saddened my heart when I thought of what my family had to endure. I started to cry, but then the night nurse showed up, taking my vitals and seeing if I'd gone to the bathroom yet. They were giving me Lactulose every couple hours. Sometime during the wee hours, I had come around, but it wasn't until 7 in the morning before I finally started to use the bathroom and the fog truly cleared.
I am still taking the Lactulose and I am back at home. Hopefully I will remain here until transplant. Hopefully things will return to normal. For all our sakes.
I am looking through my family's eyes and I shrink in abhorrence. I see fear and sadness. There is also forgiveness and even a few laughs. Nonetheless, my yesterday resulted in a ride to the hospital in the back of an ambulance that has forever changed my perspective of hepatic encephalopathy. The ambulance crew had to rehydrate me on the way to the hospital and I spent the night drinking Lactulose. As some may remember, Lactulose is the medicine that expels the ammonia from the body by diarrhea. When the liver can no longer do it on its own, the ammonia finds its way to the brain and you experience certain mood swings. There can be hallucination and disorientation and perhaps the worst one is being argumentative. I get that way. I had slipped beyond the sane to the insane.
I had turned argumentative and yelled at Lois as she tried to get me to drink some Lactulose. She could see what was happening to me. I was lashing out and sweeping things off the shelves. Later, as I tossed and turned throughout the night at the hospital, recollection came back in bits and pieces. At on point I had a sort of tunnel vision of my oldest standing far away with a look of panic. Last night I learned what real fear looked like. It saddened my heart when I thought of what my family had to endure. I started to cry, but then the night nurse showed up, taking my vitals and seeing if I'd gone to the bathroom yet. They were giving me Lactulose every couple hours. Sometime during the wee hours, I had come around, but it wasn't until 7 in the morning before I finally started to use the bathroom and the fog truly cleared.
I am still taking the Lactulose and I am back at home. Hopefully I will remain here until transplant. Hopefully things will return to normal. For all our sakes.
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