False alarm call

[Naynay99]

Hey. So I got another false alarm kidney call on Saturday night at 4:30 am.  There were 3 ppl ahead of me for the kidneys so it was probably a long shot that I would get one.  I didn’t end up getting one.  So that happened.
Got final confirmation that they went to ppl above me on Monday am.  So was stuck in limbo all weekend.  The kidneys were in good shape, from someone in early 50s.  No hepatitis C + or high-risk or anything. Creatinine of 0.8, Kdpi was around 50.

I didn’t tell anyone about the call.  I figured if it turned out to be real I would tell ppl then. After a previous false alarm it seemed better to wait.   Dealing with my own disappointment seemed like more than enough.  I can’t also deal with anyone else’s crushed expectations.  Idk maybe I should have told my mom or best friends about it, but keeping them unawares seems like the kinder choice.  I don’t know. 

I tried really hard not to get excited prematurely, to keep my expectations low and realistic so that I wouldn’t be disappointed.   I really did try.   But hope managed to sneak in anyway...   I wish they never called me.  I understand they need “alternates” to ensure the kidneys won’t go to waste but it’s a total mind p*ck.  And I just really really really could have used a win right now. This was probably my last chance at a pre-emptive transplant.

I’m barely keeping it together.  My health is declining. We are in the middle of a pandemic with infection rates that keep going up here. I am going to have to find a new place to live very soon.  I have to go back to work next week as my leave is up.   I am terrified of both getting covid and walking into my classroom completely clueless as to how I am supposed to hybrid teach.  It is all just too much.  I feel like I don’t have any more energy to try. I feel tired and demoralized and alone. And I don’t want to do any of this anymore...

[iolaire]

it’s a total mind p*ck.

So true, even in the best of times those calls are extremely stressful.  I can only imagine how it must be to add that stress on top of the additional stress of COVID, remote teaching and everything else. 

I think in some ways its good to share the calls with others, just so they a some small insight into the emotional roller-coaster that they create.  One of my calls came in when we were out with friends at dinner and I think that really made them realize what I went through each call - far more than me telling them about the experience.

[Simon Dog]

Getting a call like that means you are near the top of the list, so hang in there.

I don't think my center does "alternates" or "standbys", however, I was #6 on the list when they called me.   One person had a fever and was not eligible to be surged; the other 4 failed the final match test where my blood and theirs were mixed and observed for uncool happenings.   Just had my two year anniversary.

[Naynay99]

Congrats on ur 2 year kidneyversary! 
This is year 31 for me, and it’s still trying to hang in there a little longer. 

At my appt today my doctor told me one of her patients was on the gurney about to go into preop for a tx when it was called off...  So I suppose my 24 hours of uncertainty waiting by the phone isn’t quite so dramatic as that!   It’s still hard tho.  And it’s hard not to feel self- centered, being upset that I lost out on a new kidney, when some poor guy just died of a stroke. 

My dr is going to see if treating the anemia will help w my kidney function before starting me on PD dialysis.  So maybe I still have a shot at a preemptive kidney after all, if I get a call in the next few months. 

Wow- A stranger  just bought me coffee!!  I drove up to the drive-in about to pay and they said the person ahead of me in line paid for me.  How cool is that?!  My faith in humanity has been temporarily restored, due to a random act of kindness in the form of a $3 cup of iced coffee...

Anyhow, I am going to try to keep the crazy in my head in check and continue to wait for THE call.  And perhaps pay it forward to someone else the next time I am at the DD drive-thru.   Thanks for letting me rant. 

[MooseMom]

Urgh.  It's tough to get off that emotional rollercoaster.

I'm really glad that your doc is going to do everything possible to keep your kidney going for as long as possible.  Thirty one years!  That's amazing.  I hope treating the anemia will help it along for a while longer.

You know, there's really not much we can say through a computer screen that is of much help in situations like this.  It all sounds so trite.  But I hope you do know that we are all rooting for you and certainly don't mind any rant you may want want to indulge in.  We expect rants!!

I hope you enjoyed your coffee!  I remember when I found out that I had successfully made "the list", I was so grateful to just have the OPPORTUNITY to get a new kidney that I treated myself to a posh lunch and made a secret arrangement with the manager to pay for the family eating at the table next to me.  They looked so unhappy.  I wonder if THEY still wonder who paid for their meal, and why.  I'm sure you'll get a chance to "pay it forward", too!

Take care of yourself, and don't get any covid cooties!

[SooMK]

This is so disheartening to hear. It's always a balancing act to try to keep enough hope to keep going but not so much that you fall apart if you're disappointed. I do think it's good to share the situation with someone in real time. If you share after the fact it's hard for others to rise to the occasion--they know the ending. I hope you can hang in there and get your preemptive transplant and I so hope you can avoid COVID.

[kristina]

I feel very sorry for anyone who has to endure the build-up and let-down of a false call... the experience is just terrible ... and that reminds me of the awful experience of my false call.  The call “came” at night and I was rushed straight to the hospital, full of hope and excitement. No idea how many people were waiting, but it seemed to be very busy and there was one person, who made absolutely sure that the whole experience became an unforgettable headache. Everyone there (and the rest of the hospital) knew, how urgently this person needed a kidney-transplant, because of his very loud lamentations ... Blood-tests were taken and then we all had to wait ... and wait ...  and whilst we were waiting full of hope and at the same time very much on edge, suddenly this person started to sing in a terrible loud awful voice and in an unforgivable wrong tonality over and over again his own growling version of “I did it my way”. That tooth-ache-version of “My Way” went on for a long, very looooong time and could not be interrupted by anyone or anything, despite some loud moaning of patients in pain and busy doctors trying to talk to patients whilst this loud voice did not stop a very taxing version of “I did it my way” ... This certainly was one of my most surrealistic experiences ever...

[Simon Dog]

Worse than a false call is a missed call.   I had put the though of getting a call so far out of my mind that I did not pay proper attention to always having my phone with me.   Fortunately, my wife and I were together when it was time and they reached he number.  As soon as caller is displayed the hospital I use (she has never been a patient there) she knew it was transplant day.

[iolaire]

I feel very sorry for anyone who has to endure the build-up and let-down of a false call... the experience is just terrible ... and that reminds me of the awful experience of my false call.  The call “came” at night and I was rushed straight to the hospital, full of hope and excitement. No idea how many people were waiting, but it seemed to be very busy and there was one person, who made absolutely sure that the whole experience became an unforgettable headache. Everyone there (and the rest of the hospital) knew, how urgently this person needed a kidney-transplant, because of his very loud lamentations ... Blood-tests were taken and then we all had to wait ... and wait ...  and whilst we were waiting full of hope and at the same time very much on edge, suddenly this person started to sing in a terrible loud awful voice and in an unforgivable wrong tonality over and over again his own growling version of “I did it my way”. That tooth-ache-version of “My Way” went on for a long, very looooong time and could not be interrupted by anyone or anything, despite some loud moaning of patients in pain and busy doctors trying to talk to patients whilst this loud voice did not stop a very taxing version of “I did it my way” ... This certainly was one of my most surrealistic experiences ever...

Wow, here there is lots of waiting at home for follow up calls that often don't end up getting place so after 12 or so hours you have to assume its not happening.  When it was time to get to the hospital it was to check-in and get a room for the final testing and prep so I even if there was competition there we were separated.  That would be odd to be seeing the other potential recipients of the kidney - even if they were not nasty.

[Simon Dog]

I did all my waiting at home too.  Got the call at 430ish; told surgery at 10PM but probably midnight (they had to have the part delivered).   Once I got to the hospital it was like I was some sort of VIP - someone waiting for me at registration, one or two signatures on a form, a RN literally waiting in the hallway by a room for me when I arrived on the unit to get my blood drawn for the pre-test, then to a pre-op staging area full of empty beds, and straight to the OR a very short time later.    I even had a team of five anesthesiologists (though not at the same time), since all the residents in that specialty were handing around for the night shift waiting for something to do.

The MD has moved to a different aspect of transplant and now travels the region operating on dead people.

[kristina]

I feel very sorry for anyone who has to endure the build-up and let-down of a false call... the experience is just terrible ... and that reminds me of the awful experience of my false call.  The call “came” at night and I was rushed straight to the hospital, full of hope and excitement. No idea how many people were waiting, but it seemed to be very busy and there was one person, who made absolutely sure that the whole experience became an unforgettable headache. Everyone there (and the rest of the hospital) knew, how urgently this person needed a kidney-transplant, because of his very loud lamentations ... Blood-tests were taken and then we all had to wait ... and wait ...  and whilst we were waiting full of hope and at the same time very much on edge, suddenly this person started to sing in a terrible loud awful voice and in an unforgivable wrong tonality over and over again his own growling version of “I did it my way”. That tooth-ache-version of “My Way” went on for a long, very looooong time and could not be interrupted by anyone or anything, despite some loud moaning of patients in pain and busy doctors trying to talk to patients whilst this loud voice did not stop a very taxing version of “I did it my way” ... This certainly was one of my most surrealistic experiences ever...

Wow, here there is lots of waiting at home for follow up calls that often don't end up getting place so after 12 or so hours you have to assume its not happening.  When it was time to get to the hospital it was to check-in and get a room for the final testing and prep so I even if there was competition there we were separated.  That would be odd to be seeing the other potential recipients of the kidney - even if they were not nasty.

Hello iolaire,
... to be quite honest, I did not mind at all any "kidney-transplant-competition" coming from other patients and in fact, I had prepared myself for the possibility. And ...whether I see or hear these other patients, does not make any difference, because obviously there are many patients waiting for a kidney-transplant and, in fact, these days it even seems to get more desperate. "In the old days" it was mainly patients suffering from a kidney disease, who were in desperate need of dialysis and kidney-transplant-treatments, whereas these days some kidney-failures also seem to be connected to life-style etc. and diseases which eventually CAUSE kidney failure etc.
What do you think?

[enginist]

What do you think?

I think you're right.  A lot of people bring it on themselves.  The two main causes kidney failure, diabetes and hypertension, can both be aggravated by a careless diet, including the excessive consumption of alcohol, which may have been why the guy was singing "My Way" at the top of his voice in the hushed confines of a hospital ward.   

[iolaire]

Hello iolaire,
... to be quite honest, I did not mind at all any "kidney-transplant-competition" coming from other patients and in fact, I had prepared myself for the possibility. And ...whether I see or hear these other patients, does not make any difference, because obviously there are many patients waiting for a kidney-transplant and, in fact, these days it even seems to get more desperate.

Here in the US medicine is much more private and it would be odd to see others who are in the running for a single kidney.  The whole system is anonymous, you might know that a few other people are in front of you, but you would not see them and also would not hear them at the hospital. 

But we do have experience with a wide mix of other dialysis patients in the center.  Those patients each have their own personalities and advantages/disadvantages that become apparent other time in the center. 

I just would not expect for two potential recipients of the kidney to be hearing one another well waiting for a final decision on the kidney.  The closest you might come to that is to receive a call as an alternate and someone in your center not come in the next day because they were transplanted.

"In the old days" it was mainly patients suffering from a kidney disease, who were in desperate need of dialysis and kidney-transplant-treatments, whereas these days some kidney-failures also seem to be connected to life-style etc. and diseases which eventually CAUSE kidney failure etc.
What do you think?

I became more empathetic once I started seeing other people in the center.  Also at the time our roommate (who turned out to be our final roommate) was far overweight, diabetic, and dealing with diabetic foot infections.  I've moved on to thinking that a lot of things that we might consider lifestyle choices are not really choices but rather more likely genetic or environmental.  Lots of factors play into life, people have genetic differences, they have abuse or negative experiences that affect their outlooks, they might come from families with poor eating habits, they might have bad gut bacteria etc...

You see the same thing play out with alcohol, cigarettes and drugs, some people are highly receptive to addiction where others can easier make the choice to stop or moderate.

I don't think the fact that I have a positive outlook on life, medical issues, and stay compliant is due to some superior thinking on my part.  I mean what personally does someone do to have the ability to make better life choices?

[LorinnPKD]

What do you think?

I think you're right.  A lot of people bring it on themselves.  The two main causes kidney failure, diabetes and hypertension, can both be aggravated by a careless diet, including the excessive consumption of alcohol, which may have been why the guy was singing "My Way" at the top of his voice in the hushed confines of a hospital ward.

I think we should be very careful not to blame people for health conditions.  People make these assumptions all the time, regardless of whether they're true, and it's highly detrimental to patients actively seeking care.

[enginist]

I agree that the question is complex and the answer not as simple as I implied.  Motivation and self-discipline are not distributed equally at birth, and the traits can't always be acquired when they are needed most.  Is there, philosophically speaking, even such a thing as free will?  We all are driven by unconscious forces. 

[kristina]

Hello again,
Sorry, but I did not mean "it" like "that", but in "my" 43 years of kidney-failure (since 1971, when my kidney first failed and I was found in a coma, then my kidneys recovered a bit and carried on functioning a bit until the end of 2014, when I finally needed dialysis and then my kidney transplant "came along" at the end of 2018...
During all these years I came across quite a few nephrology-departments, read everything I could find about "survival in kidney-failure", have looked around "a bit" and noticed "things".
Of course, this is all very complex , but "things" have changed a lot during those years and enginist is quite right when he puts the interesting question whether or not there is a "free will", which again is a question asked by many philosophers over the centuries. After all, we are brought up in a certain way, we are taught to think in a certain way and adding to that, we are often copying our elders and their ways of living. So, where does our "free well" come into it? Perhaps it needs to be (allowed to be) developed first? Furthermore, once we start thinking about "free will": if people were totally and utterly able (?) allowed (?) to act according to their "free will" what would governments have to do? They certainly would instantly be without a "job", would't they ...
P.S. I have just noticed that this "free will question" does not really belong here as such, but it seems to be an important question all the same...