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Restarting transplant pre-screening

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Posted 5/20/2008 3:58 AM (GMT 0)
Hi everyone,

Wish me luck. Tomorrow at 9am I start the transplant pre-screening again. Endoscopy for the Varices tomorrow, and a full 3 days of general to finish off the week. I feel strong so I think the lung and heart tests should go well. Oh the joy of being poked, prodded and cold in those wonderful gap-in-the-back tuxedos.

Some drugs and I'm trying to get some sleep at a reasonable hour.

Be well, John
Posted 5/20/2008 4:02 AM (GMT 0)
John you will have a lot of thoughts and prayers for you tomorrow.

Get to sleep..........
Posted 5/20/2008 3:38 PM (GMT 0)
Your funny Jonn! I wish I could think of things like that to say when we go for Terry's treatment.
Have you seen the picture that circles the internet of the "S___ Creek Paddle Store"?
They have a paddle for you! Somedays I keep that pix on my desktop.

Hope all went great for you,

Carol
Posted 5/20/2008 4:52 PM (GMT 0)
Good luck John :-) .  Do you have to go through all of the test's again to get on the transplant list???  My husband had all of the pre-testing done in April and they rejected him because of alcohol use, when he complete's his A.A. in July they will re-consider him so does that mean he will have to go through all of those test's again?  How long have you been going through this??

 

 

Judith

Posted 5/21/2008 12:21 AM (GMT 0)
John, you have such a positive attitude that you should be a professional motivator!!!!! Another plus for you is that you incorporate humor into your writing and I assume that you do this all the time in your life. People just don't realize how important the combination of these two are in healing. Good luck with the appointment,
Posted 5/21/2008 12:50 AM (GMT 0)
Okay John, How did it go?????

Thoughts and prayers........
Posted 5/21/2008 3:11 AM (GMT 0)

John  We are all sitting by our computers waiting to hear from you.  Hopefully your day was OK and you might have a small chuckle for us all. 

JoAnn

Posted 5/21/2008 4:02 AM (GMT 0)
Hi everyone,

Thanks for the notes of encouragement. No bad news except that I am beating myself up a bit. I swear that I wasn't always an idiot but this disease sure is making me one: mind-fogged again!

A friend drove me to the hospital since Endoscopy requires a ride home because of the drugs. I had fasted and was ready. But no, my mind-fog had prepared me for the Endoscopy on the day they had my MRI scheduled. So the chuckle is on me. I'm just glad that I didn't get lost in the hospital and end up with a nip-and-tuck in the wrong area. My voice might have be much higher tonight.

I won't know about the MRI until the 6th -- they're looking for tumors (non to date) -- and we'll try the Endoscopy again tomorrow.

Fasting and missing breakfast this morning before going into the MRI was interesting. As soon as they crammed me into the tube, I was famished. Then they had to reboot the MRI; and then reboot the computer, twice. Ya gotta love technology, this coming from a computer network engineer. So 3 hours later, I bought my friend lunch at Ikea. The Swedes know how to cook their salmon: not too dry yet never undercooked in the center -- Hmmmmm!

So drugs and early to bed again tonight. Thanks for your thoughts and prayers.

Be well, John
Posted 5/21/2008 4:33 AM (GMT 0)

   tongue   We're all laughing with you John. I bet we've all done the same thing. I'm the caregiver and I can't keep it all straight.

Carol  

Posted 5/21/2008 12:21 PM (GMT 0)

John,

You remind me of my Wil, you both always see the upside in everything and a witty responce to follow in any situation. People always say to me that that is a good thing! Wils been sick most of his life so it's 2nd nature to him. I guess when your faced with such a terrible disease you tend to look at life a little differently and try not to take to much for granted! Always keep the posotive! Goodluck, hope you get listed! Wil returns next month to find out where he's at and if the lesions have grown or multiplied!

Thought's and prayers to All!

Huggs ans Smooches!

Toni

Posted 5/22/2008 4:18 AM (GMT 0)
Hi Everyone,

Thanks again for your words of encouragement. As most of you know, it really does make a dramatic difference going through this disease with others who understand.

JoAnn, Shelly and Pink Grandma (and everyone) - Good news so far: no further degradation of the Varices and no tumors showing on the MRI. And while being prepped for the Endoscopy, I had a chance to talk with many of the nurses. My vampire related a story about a patient that had come weekly for Ascites draining. He finally had the liver transplant and when he came in for his follow up visits, they hardly knew him. The phrases used were "a new lease on life", "happy and young again", and "a real miracle". I wish that for all of us -- as patients and caregivers, we need to believe.

Toni - I can only hope to hold up as well as Wil. Give him my best wishes! Let me know how next month's testing goes.

Carol - Anyone who has to care for one of us has a built-in excuse for anything, especially stress-related memory gaps. We don't make it easy, and with the personality changes, it must sometimes be hard to remember the 'why'. I hope that we remember to say thank you. Say hi to Terry.

Judith - I really don't know the interaction between the transplant list and the re-screening. I've heard that other organ failure bounces one from the list so I'm assuming that as long as the other organs are sound, it shouldn't be a problem. I am not aware of the actual timing for re-screening but I would think that if your husband was just pre-screened in April and only holding on the addiction survey, that re-screening wouldn't be necessary until mid next year. Remember, I don't really know.

Tonight I'm very tired (I only slept all afternoon) so I'm hoping for another early sleep, this time without the drugs.

Be well, John
Posted 5/22/2008 6:57 AM (GMT 0)
yeah yeah yeah yeah
Posted 5/24/2008 4:51 AM (GMT 0)
Hello John, Hope all went well with the work up, my husbands been there twice. I love the humor, I used to feel guilty when I started cracking jokes with the DR and my husband like it was not appropriate. One day the Dr was asking him about chills, hot flushing, problems urinating and mood changes. Well i couldnt resist.... i piped up with " how did you know I was having menpause issues", i thought he was going to choke. you just have to laugh!!!
Posted 5/24/2008 5:13 AM (GMT 0)
John, glad you got a good report!  I had been scheduled for an endoscopy in July, looking for varices (even though the hepatologist said she didn't think I have them.)  However, I felt I needed a longer period of recovery from the surgery on the 29th of this month, before they start "poking and prodding" again.  So I'm going to move it to Aug., but will have to call in June to schedule it.  I just wanted to ask what kind of sedation do they give you?  Is it Versed?  I'm assuming that something is given!

Hope you've caught up on your sleep.  I'm heading that way myself now.

Connie

Posted 5/24/2008 6:29 AM (GMT 0)
Hi Connie,

I just wrote you over on 'valerian root' (I think), or 'Hi', wishing you well on your upcoming surgery.

Anyway, the endoscopy was a breeze -- I don't know what they knocked me out with but I haven't slept that well in quite some time. No after effects, no throat irritation. I tried but couldn't convince the nurses to let me come back once a week for the sleep. So darn picky about 'medically necessary'. Spoil sports, one and all. But they let me sleep for a while at the clinic; I dozed at my friend's house near the hospital until I could drive myself home; then slept the rest of the day in a delightful slumber.

I should go to medical school and become a doctor just so that I can self-medicate! lol

Big Memorial Day party at a friend's farm -- live bands, lots of food, a home-made beer taste-off, and gallons of seltzer and pomegranate juice for me. Do I know how to drink seriously or what? If it's a good day for me and I'm out of bed, I'll enjoy going. I missed the last 2 years so it would be a very good thing to be able to go. A chaise lounge under a tree, a warm breeze rolling up the hill, the smell of the BBQ, some music and friends. I can live with that.

One of my previous incarnations was in the recording business so have lots of friends in entertainment. It's a good thing that watching them drink doesn't affect me. Of course that incarnation was in the 60's and 70's so drinking was not at all fashionable -- as I vaguely recall, there was some sort of herb involved. They were heady times -- my first wife was talking to Jimi Hendrix when we met; I met Zeppelin before their first album and sat in on recording their second; and Jerry Garcia lived a few houses down from me in the Haight.

Please forgive me my 'old times' ramblings. My friends are trying to get me write a memoir and my memories from those days (the not really blurred ones) are more vivid than recent ones and seem to be pushing for attention.

Again, wishing you the best in your surgery.
Be well, John (still lost in the 60's)
Posted 5/24/2008 11:26 AM (GMT 0)
John

So gald things went well with your testing. Just nosed in to your letter to Connie and I loved the old memories. My son would be so envious (he is an old sole trapped in a young body), that you met Hendrix and Zepplin. I however am envious about the party you are going too. Sounds like such a great time. Have a wonderful weekend and certainly tell all when you return.

Lucy
Posted 5/25/2008 5:27 PM (GMT 0)
John  You have lived such an amazing life.  Zepplin and Hendrix.  What stories you could tell.  You could keep a lot of us entertained.  I was never a big fan of Garcia but I have a son in law that still is and he is only 34.  I have to admit I did like Janice even those her life was cut short and some of Dylan.  I do think he is still a little strange but what a musician!  Keep those great stories coming.  Hope you are not without your paddle today.

JoAnn

Posted 5/25/2008 10:32 PM (GMT 0)

John, thanks for the reply.  Reminds me of when I had a psychotic reaction to Prednisone (was hallucinating big-time) and when I went to the ER I was put on Thorazine for a week.  Well, it was like coming down from a bad acid trip (though I never had a bad one) and I've never slept better than when I was on Thorazine!

My memories of the 60s are similar, but on the East Coast in Greenwich Village, and later on the Upper West Side (Needle Park) and in the Columbia Univ. area.

I just saw I'm Not There, the movie about Dylan.  Very strange, and so is he.

I hope you made it to the celebration today.

Hugs,

Connie


Post Edited (hep93) : 5/25/2008 4:46:13 PM (GMT-6)

Posted 5/26/2008 5:04 AM (GMT 0)
Hi Lucy, JoAnn and Connie,

Thanks for your notes. I didn't make it to the party - just too much in the day. My best friend was conducting New Haven's Memorial Day Concert so I couldn't miss that, and afterwards I just didn't have enough left to head out to the farm. My friend Dave, the host, will burn me a CD of the bands so at least I can hear the music.

Lucy - Please tell your son that Zeppelin was amazing. Bobby Plant invited us up to the dressing room at the Whiskey-a-Go-Go on the Sunset Strip before their show, where we hung out for about an hour with the band. We sat in the balcony for their set from their upcoming first album and were absolutely blown away with Jimmy Paige's blues / rock. It was an accident that I was even there so fate treated me well.

JoAnn - I have to admit that I never really appreciated Jerry and the Grateful Dead as much as others. Since they lived on the block, I kind of thought of them as our neighborhood garage band (don't tell my friend Glen that I said that). I was in the Haight for the 'summer of love' ('67) and got to hear Janis and Jerry and Country Joe, etc. play free concerts in the park. Until the whole thing collapsed in the Fall, it was a very special time -- one that we thought was going to last.

Connie - I hadn't thought of Thorazine in years. We had a friend who was such a downer that Thorazine was his nickname. I think that it was the ultimate sedative of the day so I imagine it was a very sound sleep. I didn't come East until '80 to I envy your Greenwich Village days. I imagine it as much more intense and sincere than the CA scene.

I should see the Dylan movie. I didn't meet him but because of him, I ended up living briefly in the 'rock castle' and slept in the 'Dylan bedroom', his glass room on the third floor roof, overlooking Griffith Park, all of LA, with a view to the ocean on a clear day. I was admiring a psychedelic paint job on a house and found out that he had painted it. The owner of the house (subject of Dylan's song 'Dear Landlord') also owned the rock castle (where Morrison fell in the pool, and Iron Butterfly wrote In-A-Gadda-Da-Vida) and I went to work for him.

Sorry for the mental diarrhea. It just jumps out of me. Just to get it out of my system, I suppose that I should get to work on this memoir before all of my memory goes. I suppose that this is a symptom so please just tell me to shut up when you've had enough.

Be well, John
Posted 5/26/2008 5:18 AM (GMT 0)
Hey John,

You did have a good day though, didn't you. I think Terry did too. He is so happy to be feeling a little more energy lately. It just happened all of a sudden about 4 days ago. It last about 3/4 of the day and then he crashes, but that is a lot better than he has felt since last October.

Carol
Posted 5/26/2008 6:22 PM (GMT 0)

Carol, so glad that Terry is having some good days!  Make the most of them!

John, sorry you didn't make it to the farm, but hopefully you still enjoyed what you were able to do.  I enjoy your memories.  It was so surreal to go back to the Village in April, after decades away.  Folk music reigned in the late 50s to mid-60s down there.  The coffee shops had originally just had poetry readings, but expanded to include folk singers/musicians and ultimately phased out the poetry.  I could pick up $5-7 a night reading my poetry on the weekends and in the summer at The Gaslight, Cafe Wha?, and Cock 'N Bull (renamed The Bitter End.)

In another thread (Valerian root?), I mentioned that there are 3 new Dylan books out, one by his Village Days g.f. Suze Rotolo, and one that includes 176 of his paintings.  I didn't like Dylan as a person and didn't like his voice--but I certainly came to appreciate him as a song writer extraordinaire.

Hugs,

Connie

Posted 5/27/2008 4:17 AM (GMT 0)
Hi Carol and Connie,

Carol - I am so pleased to hear that Terry if feeling better. Even if it's for a portion of the day, it makes such a difference. Give him my regards and best wishes. I know that it makes a tremendous difference in your day too, so hooray for the good hours, and good days, and hopefully, good months.

Connie - it's so cool to hear about your time in the Village. I would have loved to have been there with you. Poetry reading in the Village -- talk about an iconic event in a special time. I'd love to hear more.

I need to get to sleep at a reasonable hour this morning. Tomorrow's testing is Cardio. While they amp me up on radioactive heart stimulants, I'll keep a picture in my mind of you and your wild beatnik friends reading poetry, singing folk tunes and generally mis-behavin'. We changed the world -- not quite how we imagined -- but we made a difference. Keep the faith!

Be well, John
Posted 5/27/2008 4:18 PM (GMT 0)

John, good luck with the testing today!  If you're not too wiped out tonight, let us know how you did.  I have lab work, EKG, and chest x-ray tomorrow as pre-testing for surgery on Thurs.  I called and asked about pre-registration, as someone usually calls to make sure all the info they have is correct.  I was told to be there an hour early on Thurs.--6:30 AM instead of 7:30!  Yikes!  I take the van for the handicapped that the city runs (because I don't drive and have artificial hips), and they always allow a lot of time to get anywhere.  So they will be here between 5:15 and 5:45...meaning I need to get up at 4 at the latest, or 3 AM if I take a shower.  I think I will shower tomorrow night instead.  I'm such a night owl, there are times I don't get to sleep until 4:30 or later, particularly if I'm on the phone with my best friend in NYC, who also happens to be a night owl...worse than me.  I've been trying to get to sleep earlier each night, but the earliest I've made it was 1:30 AM.

You know, John, just like the "summer of love," we never imagined the poetry/folksong era in the Village changing, either.  You used the correct term--beatnik!  Most people say, "Oh, you were a hippie!"  And I have to correct them.  I have some music recorded live at The Bitter End.  Brings back a lot of memories.

JoAnn, Lucy, Toni, and everyone:  How are things going today?

Hugs,

Connie

Posted 5/28/2008 12:46 AM (GMT 0)

Connie - You are correct.  I was right in between the beatnik and Hippie erra.  So I'm not really sure what I was but I know I loved the music.  It was so much better then the music of today.  It probably has to do with my age.  I can not stand the stuff now.   I know our parents felt the same way.  Jerry has had a horrible 4 days.  We spend all day today at two Dr's   It turned out he has shingles.  The poor guy is in so much pain and refuses to take any pain meds.  If it was me I would be dumping them down my throat.  It started on the back of his head and has now covered his entire head neck, and one ear. Moving on to his chest as we speak.  The horrible blisters and they are popping and liquid runs down his neck.  Have you ever in your life heard of this.  I don't know how he stands it.  I can't even touch his head and he yells.  The swelling in his feet is getting really bad.  If he keeps them elevated it helps.  We leave in the morning to Vanderbilt.  I'm hoping the Drs there can convince him to take pain meds.  They probably won't because it can be hard on his liver.  How hard is the pain on his body.  I would think it will cause his blood pressure to rise.  I think I will take it.  Hope you are all good.  John and Connie keep those good stories.  I love to read them.  OH LORD WON'T YOU BUY ME A MARCEDES BENTZ.  Have a good day.

JoAnn

Posted 5/28/2008 4:32 AM (GMT 0)
Hi Connie and JoAnn,

The cardio tests seemed to go well, although I only heard about the 'bubble test'. I'll get the full scoop on the 6th when I meet with my doctor. I don't know what they put in the radioactive cocktail but every joint in my body is screaming tonight. I took half a vicodin and spent some time in the sauna with a friend and that helped. I think though, that I will take the other half of the vicodin. I'm not as tough as jerry.

Connie - I don't know if you'll read this before surgery but my thoughts and prayers are with you. I trust that all will go well and you'll heal quickly. We're all cheering for you.

JoAnn - Shingles! What a bummer. I've known a couple of people who've had it, and even in good health it is nasty business. I hope they have better medicines by now as it seems to take a lot of work to cure it. If the doctor isn't overly concerned, I hope that Jerry will consider taking occasional low dosages of a painkiller. If I don't take a half periodically to stop the constant pain, I never get caught up on real rest. The vicodin has Tylenol, which is the least damaging to the liver of the OTC painkillers. I would never take or advocate taking it every day (addictive and damaging) but for me a half once or twice a week takes just enough edge off the pain to allow me some R&R.

I hope that the vomiting thing is solved with this visit to VH. Best to both of you.

PS - JoAnn, you noted Janis' song from her last album. I was at Sunset Sound Studios at that time and my friend Tom Harvey was the recording engineer sitting and waiting the night she didn't show up. None of us could believe that we lost her. She was so real and so alive in all that she did. "Take a Little Piece of My Heart"

Be well, John
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