Sunday, January 10, 2010

The Shape of Things to Come

We had some good news Friday, more or less. My CT scan revealed no lumps or tumors and, amazingly, no ascites -- the excess fluid that I believed all along was sloshing around my stomach. Evidently I just got fat on my own. I suppose having a degrading liver has something to do with that. But the scan did reveal a blood clot located in my hepatic portal vein. More on this in a second.
We first met with the pharmacist who did a run down on all the drugs I am taking. She then informed us that my transplant coordinator wasn't in because she had the day off. I was very disappointed to hear that, because up until now, we have still not had a chance to meet her. My last coordinator left the clinic almost 4 months ago. I was really looking forward to meeting the new nurse who is in charge of my care. That transition has left me feeling a little lost, especially since I had such a good rapport with my last coordinator and now I feel a little lost in the shuffle. And even though I understand that her jumping into a new job and learning the ropes and dealing with the patients who are far sicker than I am, I had at least expected to have some sort of meet and greet in there somewhere.
We later met with a P.A. who seemed rather nice. Lois and I voiced some of our concerns and told her about some of the problems I've been having. After a minute or so she told us about the blood clot. She told us that a clot like this was not uncommon with people who were going through liver failure and that it most likely posed no threat, but that we would have to continue to monitor it and treat it if it started to look like it was going to be a problem. We were also told that this particular clot was unlikely to displace itself and that it would probably just harden and stay where it was.
When the doctor came in we first started talking about my stomach pains and the whole issue of the blood clot kind of got lost on us. Once I started talking about some of the pains I was having and the difficult time I had catching my breath and losing my voice when I talked, that became more of a concern to my doctor than anything else. After I described an area where I got deep chest pains, he decided that I needed another echo bubble cardio-thingamajig. We never talked about the clot. Later I wanted to kick myself, especially after doing a little research on blood clots in the portal vein. Some of the symptoms I read about online described exactly what I was feeling. Elevated liver enzymes, sharp pains beneath the rib cage (exactly what I am feeling) and stomach pains.
I had labs drawn on Friday, so I am anxious to see where my new levels are and see if my MELD score has changed.
But back to the blood clot, the P.A. said that the thing wasn't the type to displace itself, and it shouldn't block the pipe the blood was flowing through. And it's a pretty damn big pipe, it’s as big as the esophagus or the aorta. I’m not sure how she knows it won’t block it.
What makes me madder than hell is that we kind of got lost in all the other topics, when the doctor finally showed up we never went back and talked about the one thing that seemed most important of all, and that was the damned clot.
After it was all said and done, the doctor left us with a series of tests that they are going to run. Another endoscopy, a colonoscopy and the heart thingy. We will see what they find there and they will check my new labs to see if the MELD has changed or if there is anything else that looks out of the ordinary that they might want to think about addressing. When I get my endoscopy I will talk to the surgeon about the blood clot and I am planning to talk with my coordinator later in the week.
The funny thing about it all was that the clot seemed to be the least of anybody’s worries and the P.A. kind of frightened me when her voice started cracking and her face got all flushed at the possibility of admitting me right then and there to see what was going on. But then the doctor came in and said, "Oh, we'll run some test and see where we are."
I preferred his approach a little bit better, even though he did seem a little more concerned with what was happening in my chest than in my stomach. I will get my new MELD score sometime this week. I am hoping for at least a higher number.


  1. Ugh. I find meetings like this with Doctors never go the way I want them to. I realize on some level it is because they have a lot of stuff in their heads that I do not and as such they prioritize differently and perceive things differently but I generally leave unfulfilled and with the same questions I had prior to my meeting.

    The clot sounds worrisome. I would not hesitate to grill the Doctor. Maybe sending an email is a good idea as well as then you might get a contemplative response?

  2. You'd think that a clot would be important because, well, it sounds scary.

    I thought the same thing about finding a lump. No one seemed to care!

    I think we're all so trained to deem certain words just - appalling, that when we hear them, we think they can't possibly be anything else.

    I COMPLETELY understand why you'd be mad though. I'd be mad. Well, you probably wouldn't be mad because you're a better person than I am. I'D BE

    I'm going to take it that it's not bad news though or else they would have been all over it immediately.

    Then again, just as a side note to throw it out to you... if you ever want me to yell at anyone for you, I'd be more than happy to!

  3. Laoch,
    I agree, and they don't seem to bend very much either.
    In hindsight I always remember everything after I get home. And the fact that we just had a long conversation with the P.A. and had a lot to absorb didn't help when he showed up and gave us his few minutes.

    Bitter Angel,
    Thank you.


    You would think that a lump or a clot would be a little worrisome. Lois and I are still kicking ourselves for getting sidetracked.
    I kind of thought the same thing. If they thought it posed a threat, then they might have admitted me.

    Did this lump happen recently and did you get it resolved? Or are you waiting on news? I can holler at someone too.

  4. This post has helped me so much... My 70 something parents are going through medical issues. I am trying to keep it all straight. This post made me realize that we are not the only ones leaving the Dr's office saying, "oh, crap- I forgot to emphasize this, or ask about that." I wonder what people do who are less able to process all this info- No one should ever go to the doctor alone. thinking of you and your family-

  5. I've been thinking of you. i have well, i have no right to have feelings one way or another i suppose about the PA and the doctor and all that - but i have mixed feelings about it all.

    i've had several long term medical issues - one a twenty plus year one, but the most critical was my pregnancy. i went into labor at 25 weeks. not good. quinn is alive because of the care i received but there were many issues all which complicated the other issues and each doctor had their own area of 'concern' not officially but somehow it seemed personally. that's when i began to keep a very specific topic journal that i brought everywhere with me. i would note everything said and who said it and then tell the next guy and then call the first one back if i had to. i would often hear things like 'oh in that case get back in here.' Yancey and i learned when we were with each doctor we would get taken with their 'issue' and forget something important. so write everything down and then keep cross referencing. for the most part we found doctors really appreciated this.

    good luck friend

    and in response to your response on my blog - you are right - both your daughters are incredibly beautiful!!!

  6. Wow, I am so sorry you are having to go through all this scary, time-consuming, expensive, and often painful stuff.

  7. I just left a note at your other blog, but I am glad that I popped over here and found out what was going on. I was starting to worry about you. I am so sorry to hear that you have developed a blood clot. Doctors have a tendency to side-track us. They seem to have the ability to cause perfectly intelligent individuals to become tongue-tied in three seconds or less!

    I hope you receive the answers you need and DESERVE! Please keep us posted. I, for one, do worry!


  8. Dear Beaux I am waiting to hear only good news.

    I am glad that your liver looked good.

    Love Renee xoxo

  9. No one cares about it

    I did all the things I was suppose to... and now I'm done thinking about it.

    Still, I'm good at yelling at other people for other people! So feel free to take me up on that...

  10. Razor,
    For what it's worth, I care. Can't you go see someone else?
    I have test on Monday and Tuesday. My labs showed my MELD dropped from 13 to 10 points. That about sunk my heart, but my kidney functions are good, so there's that. Scores bounce up and down all the time (I am reminded), so I will look at it in a positive light. In the meanwhile I managed to get myself real sick when they upped my dosage of omepraozole (the acid reflux purple pill stuff), and my 20mg dose went up to 40mg. I loaded my pill container twice and didn't realize I was taking 2 40mg capsules instead of 20mgs. I was double dosing my doubled dose and I got all kinds of sick. Still recuperating from that. Live and learn.

  11. So glad to hear there are no tumors. Let us know as soon as you get your latest results.

  12. Oh Beaux dear friend, thank you. You know exactly what it is all about dear one.

    Only good results for you dear friend. Only good results please.

    Love Renee xoxo

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  14. Double dosing the double dose... yikes.

    I always hesitate to recommend anything to you because you've got a lot of stuff going on over there all at once.

    However, for whatever it's worth - if you find yourself in a position where you're suddenly not producing enough acid...

    ... one tablespoon of vinegar.

    That's it.
    Brings instant relief.

    Something to maybe bring up with your doctor.

  15. I just read these and I am going to ask my doctors about it. Very interesting. Makes a lot of sense. Thanks for the links.

  16. Hi Beaux - found you thru friends blog and have been reading your story. My husband is a kidney transplant recipient (from me!)and I'm all too familiar with the process of testing, testing, waiting and testing. Good luck to you! My guy is doing fine after all these years (10) and I have a good friend with a husband who has a liver transplant and he is doing well also.