Gerald Slept Here!

[big777bill]

 Aleta zounds like your are doing things in reverse. Most people retire from northern states to southern. The property taxes up here in the northeastern states are crazy. Patty and I would love to be able to sell our NJ home and property and move to eastern Tenn. I honestly don't know how we will be able to survive around here financially when we're fully retired. Chris Christy has a lot more work to do in this state, lol. So far all he's done is tick off the people in the teachers and state employees unions.

[Gerald Lively]

Just came back from chemotherapy.  My creatinine numbers are climbing again (blood work) after a month of slowly getting better.  I am worried that they’ll pull my chain and drag me back into dialysis.  Next blood test is Thursday.  This much like watching the earth beneath your feet disappear a little at a time while staring into the abyss.

I had two Nephrologists until today, now I have one.  The signs are that they disagreed on permitting me to go without dialysis.

gerald

[Traveller1947]

You'll handle whatever comes, Gerald.  And you have us to support you, no matter what.  Hold steady...

[galvo]

Bloody hell!

[willowtreewren]

Aleta zounds like your are doing things in reverse. Most people retire from northern states to southern. The property taxes up here in the northeastern states are crazy. Patty and I would love to be able to sell our NJ home and property and move to eastern Tenn. I honestly don't know how we will be able to survive around here financially when we're fully retired. Chris Christy has a lot more work to do in this state, lol. So far all he's done is tick off the people in the teachers and state employees unions.

Yes, we KNOW it is backwards, but our daughter lives in Massachusetts and recently bought a house with an attached apartment so we could retire into it (handy to have the grandparents nearby for baby-sitting, hey?)

Gerald, you know creatinine is like blood sugar. It goes up and down. I'm hoping this is only a temporary rise and not a trend.

 

Thinking about you and keeping my fingers crossed for good numbers on Thursday.

Tomorrow we will be doing the looooong 15 hour drive back home to Tennessee. It is still hard to wrap my head around living in Massachusetts, but that is still a few years off.

 

Aleta

[Gerald Lively]

Back in the day I was at Ft Devens getting my classified training.  Ayers, Massachusetts.  Ugh!  Unit moto:  No pay, no promotion, no recognition.  Had to have an IQ better than 125. 

Right now I feel miserable.  Body betrayal.  I am making decisions.   I am using polite words, I hate dialysis and if they want to try and drag me back in there . . . . well, they'll have to drag me back in there.  Crap!!

At chemotherapy someone asked me today if I was "an old hippy".  Perhaps I should have told them what war means to a person behind the trigger. Perhaps . . . . . . . . shit, who gives a damn.

[Gerald Lively]

My friend and fellow Vetran of the Army Security Agency is dying.

"Gerald, listen to the doctors!  If you need dialysis, accept it.  My numbers are pretty good, kidneys working fine. 

Last week's blood tests have resulted in my primary physician taking me off all meds she had prescribed except the prednisone (5mg daily) to keep the uric acid levels down.

Still on various meds to deal with the kidney/cancer problems.  Thankfully, no chemo for me.  Oncologist says I can have organic cheese as part of a low-fat diet - just fine with me, since I buy the cheese when it goes past pull date and age it for another year or so - unlike most cheese, it ages nicely to become very sharp.  Lord only knows that my diet has become very "low fat" - lots of salads, et cetera.

I am very thankful for the prayers that have been, and continue to date, for my health.  They are indeed most welcome, and being answered.
We have had very good support within the local community as well; my youngest son has moved in with us (found a job locally) to help out with the household tasks I now find difficult to do.

Dropped from 259 to 212 pounds as a result of the ordeal.  Gave away a tuxedo and a suit because they are now way too large for me.

Hang in there, Gerald... God isn't done with you yet!"
Duane Vincent
Knight of Columbus
Vincent de Vancouver
..........................

I gotta get squared away and can't.  He has bone cancer now.  You ought to hear this guy speak, he sounds like God.

gl

[Grumpy-1]

GL  - your first line confuses me.  "My friend and fellow Vetran of the Army Security Agency is dying."   Just wondering who you are referring to.  I too was in the ASA - early 70s.   grumpy

[Whamo]

   I hope you're feeling better, soon, no, I hope you're feeling good, now!   

[Gerald Lively]

My post contained the complete letter from my friend.  Why have you failed to notice this?

I was with the ASA when they were forming (1958).  I am also aware that the entire organization changed with the advent of Vietnam due to preceived manpower needs.  It was no longer a "thinkers" unit.  And, after Vietnam no one in the ASA was risked in combat.

gl

[Gerald Lively]

Here is something to think about:  How would you feel if you discovered that you were on dialysis four months longer than necessary due to the inattention of Doctors and Nurses?  And, the only reason you aren’t still on dialysis is because you insisted on some testing.

Let that one wash over you for a while and you just might know why I am angry.  One’s sense of humor becomes difficult to find.

gerald

[willowtreewren]

Would some Tim Minchin help?

www.timminchin.com/

I saw him live yesterday in DC. 

Gerald those 4 months of dialysis are water under the bridge now. Be angry, but don't let them interfere with what you are living NOW!!!!

  Aleta

[boswife]

I can barly let that just 'wash OVER me'.. it makes me feel as if i were drowning!!!!!!  You wernt around when i was going through constant questions on this 'testing' of hubby stuff but i about wore my welcome clean out of here.. And still, when i read this from you, it fills me with i believe some of that same anger you now feel. See, when Bo was just starting D, he never swelled in his legs etc.  Within a month he did swell each treatment and still does to this day.  I wonder now if there is ANY possibility that he could be tested to clear for some 'time off'.  It fills me with crazy head stuff to think he's gone through all this for not. I wonder if it would be of any use now to try again...  So, i DO see why you could have anger.
Now, about you otherwize... whats up? Does this mean that your still kicken it w/o the machine? 
wishing you well, and prayers that each of us can let the anger lift.  I dont like the feeling from it, and i wish it gone     

[cariad]

Oh, I just love Tim Minchin, Aleta! Have you seen The Pope Song? Did he sing his I Love Jesus song in DC (I think it's also called The Evolution Song)?

WARNING: You do not want to look those up on YouTube if you are easily (maybe even not so easily) offended when people write satirical songs about religion.

Gerald, I feel for you. Very frustrating to think you've undergone needless suffering. I'm still angry about some mistakes that other people made over 30 years ago. Strangely, I went in to ESRF due in large part to medical malpractice, but that is not where my anger lies. I guess with them I accept that people make mistakes. I am angry about how I was treated afterward by the people who should have known better, and that created a different kind of needless suffering.

Like Boswife, I can relate to your anger and think it is completely understandable. Also like our darling Boswife, I hate the feeling and think we're all better off if we can let go of it. I'm not good at this and in no position to tell you how to go about it, so I'll just leave it with I'm really sorry you find yourself in this situation.

[willowtreewren]

Cariad, he did not do I love Jesus (interestingly, he doesn't consider that one of his better songs). He did Confessions, Storm, and If I didn't have You. All were excellent. I think the Evolution Song is called Logic, or something like that. Anyway, it was an amazing day! Paul Provenza was the MC, another hilarious and extremely intelligent guy. I couldn't help but think of you while we were there. The boys would have had a blast, as would have you and Gwyn.

Gerald, find some good comedy on YouTube to lift your spirits.  Nothing heals quite so well as laughter.

Aleta

[Gerald Lively]

To honor caregivers everywhere, I pulled this off the HuffPo website: ................................

Here's what I learned: If it's too heavy, don't move it. And, that realization does not come without a cost.
I learned the hard way.

The other day, I felt the sudden need to clean the wood floor in the dining room; a process that would require removing all the furniture. First, I moved the solid mahogany dining room table that I inherited from my grandmother. Easy as pie. Then I moved the large breakfront and corner cabinet. When I leaned over to lift the edge of the area rug, I felt a twinge between my shoulder blades.

But did I stop?

No, I did not.

I rolled that sixteen-by-twenty foot double-weave into one long log and proceeded to drag it across the floor. That's when I heard it. A pop. Or a ping.
It's hard to remember the exact sound because my head was consumed, almost instantly, with a burst of white-hot pain that knocked me to the bare floor. When I came to, I called to my husband in a quivering voice. "Please," I begged. "Help me."

He didn't hear me. His concentration was on the television.

I called again. "I'm on the floor. Can you give me a hand? I can't move."

"Can you wait a second?"

"I don't think so. The pain is spreading. I might be having a heart attack."

"But it's the Final Four," he shouted from the couch.

During a commercial, he tossed me a bottle of muscle relaxants leftover from his own back injury after shoveling snow one long ago winter.
"This prescription is expired," I said.

"Foul!" he shouted. "That was a foul! Where's the ref?"

It turns out that muscle relaxant dosages vary according to the weight of the user. As a result, I have only a vague recollection of the 24 hours that followed. During that time, no one noticed my dilated pupils or slack expression. If I had been there, I'd have called an ambulance.

I have been lying on the floor now for six days. From this angle, I can see clumps of dust under the end table, a stray sock under the sofa and a nest of what might be silverfish tucked beneath the baseboard. Luckily, my urge to clean is dulled by medication.

This morning, my husband stood over me to ask if I knew where he'd left his iPad. He also needed to know where I keep the Wet-Vac and if I paid the mortgage. Obviously, he misses me.
 
Later, a crash came from the kitchen. "Yogurt's dripping onto the floor!" someone cried out. "Mom's going to be mad."

I increased the temperature on my heating pad and closed my eyes. Clean floors are totally overrated.
 
 

[willowtreewren]

 

Okay, does this give me an excuse to NOT get my house ready for Hanify to visit from New Zealand?

Her arrival is in less than three weeks and we are less than half way through cleaning out the closets. LOL.

Aleta

[boswife]

tickled my innerds.. hit a real funny funnybone 

[Gerald Lively]

Chemotherapy today, last one until September, maybe never.  Have to see Oncologist next week.  Nephrologist tomorrow and another round of blood tests.  Cancer Center blood test showed Creatinine down to 2.6, should be good enough.  Hemo up to 12.  Sounds like a cure.  Hodgkin’s Lymphoma is a blood disease, at least remission.  Vascular Surgeon is antsy to do the seventh surgery for the fistula.  This incision is supposed to be a very long one.  Thinking.

Provocative Question:  Do I live for dialysis or do I do dialysis to live? 

I may say no to more dialysis if it is recommened.  There is no hell like dialysis.

gl

[willowtreewren]

I say that if you HAVE to do dialysis to live, take it home. That way life is much more flexible, and you aren't stuck with arranging your time/life around your appointments.

There are some down sides to home hemo, though. It does take some room and organizing. BUT, we found it to be a very viable option that allowed us to both work full time. Do think about it.

 

Aleta

[cassandra]

You dialise to live, and willowtreewren (what a lot of letters...) gives a good suggestion. I still am waiting to get HH, but even with in-centre its still worth it. And no D is not my only problem, just one of many.  Come on GL you have to much humor inside you to pull out now.

lots of love, and strength Cas

[Whamo]

I got those dialysis blues,
three times a week
four hours each time
My fistula leaks.

I got those dialysis blues
At the TV I stare.
My IPAD battery is dead
and I'm stuck in this chair

I got those dialysis blues
The first hour goes fast.
The second hour gets slow.
By the fourth hour,
my blood pressure is low.

I got those dialysis blues.
But across from me.
Sits a Goddess from heaven.
Puking for all to see.

I got those dialysis blues
But I'm not sad
In four hours it's over
And I will be glad.

[Gerald Lively]

Okay!  I do not need dialysis.  The Doctor says I am on my way to a 30% kidney function.  He noted that since I have been off dialysis (three blood tests) my numbers have been rapidly improving.  He also said that he has had only two cases where a patient recovered before six months, and only one after eight months of dialysis (me).

Will be seeing the Vascular Surgeon about taking that chest catheter out.  They are still telling me to do the forearm fistula.. Thoughts?

gl

[Gerald Lively]

Cancer is in remission for now.  A good day all around.

[MooseMom]

Gerald, you may find it interesting to return to your very first post on this thread.  Read all ten pages, and then sit back and marvel at the extremely good fortune that has been bestowed upon you.

You do not seem to need dialysis any more.  Do you have any idea how miraculous that is?  Now go and read the stories of all of the other people here on IHD who do not need dialysis anymore.  Can't find any?  That's because there aren't any.  Just you. 

I've heard people say that miracles can happen.  I haven't had any miraculous things happen to me, but here on IHD, I have witness three miracles...

1.  Paris, who was told she'd probably never get a transplant because her PRA was about a billion, got a transplant. 

2.  Cariad, who because of the clinical trial in which she participated, is now for all intents and purposes CURED of ESRD.  A CURE!

3.  And now, you.  Your doctor has told you that you are the only patient he has ever seen recover after eight months of dialysis.  What does that feel like?  I'd love to know...how does it feel to have such profound despair lifted from your soul?  The rest of us can hardly imagine it.  I don't want to imagine it because it is too painful to imagine something that probably will never happen.  So maybe you can tell us how that feels?

Cancer in remission, recovery from ESRD..."a good day all around" is probably the biggest understatement I've heard.  I hope you will celebrate your miracle!  And spare a thought for the rest of us mortals who will never recover.