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MooseMom
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« on: August 31, 2020, 02:20:58 PM »

I just had a terrifying experience and thought I'd tell y'all about it as a cautionary tale.

We were at the end of summer holiday in Northern Michigan, and one day I had one of those headaches you can't seem to get rid of.  I spent most of the day in bed, out of the heat, with the A/C on full blast.

I awoke at 3AM the next morning, and I noticed my headache was gone, but as I turned my head, I got extremely dizzy.  As the day progressed, I was so very ill with what I imagined must be some sort of stomach flu.  I was losing fluid in every way imaginable but could not move enough to drink water in any appreciable measure.  I could not walk to the bathroom, but I could stagger, barely. 

My husband contacted our regular physician back home who phoned in an anti-nausea prescription to the local pharmacy.  I knew, however, that I'd need medical help of a different kind.

I asked my husband to contact my tx coordinator.  I managed to talk to her, and she introduced the idea that it could be covid (I had thought of that, but I didn't really think that was the problem) and that I needed to get an ambulance to get to the nearest ER.

We were staying in a B&B situated in an old two storied house that was not made for the easy mobility of wheelchairs, but the paramedics came and somehow got me out and into the back of the ambulance.  I was able to answer their questions, and they decided that whatever the problem was, it wasn't covid. 

They immediately started me on IV fluids, and they quickly got me to the ER.  Before I was wheeled in, I had to have that infamous covid test (my nose will never be the same again!).  It had been hours since I had last urinated, so clearly there was concern about my kidney.

They got me stabilized and decided to admit me.  I spent almost 3 days on IV drips of various composition.

I was so lucky.  My labs showed that my kidney was responding well to the fluids, and the doctor was very happy with my renal function, which he deemed "excellent".

I was asked several times why I waited so long to call for help.  I had no one answer for that.  We were on holiday, and I didn't want to be a burden, so I mumbled to my husband to go about his day and treat himself to lunch and dinner while I stayed in bed.  I didn't expect him to hang around in the room.

Mainly, though, I was just too sick to move my mouth enough to talk.  But once I realized that I would not "just get over it", I started to panic, and I forced myself to talk to the tx coordinator.  I am convinced, though, that had I waited another few hours, I may not have recovered as well as I did.

In the end, it is thought I just was unlucky enough to contract a stomach virus.  I've been trying to work out what I could have eaten that affected me but not my husband (we ate largely the same foodstuffs, but eating out can be risky, I guess).  Maybe I got sick and he did not because his immune system is not compromised?

So, I just want to post this cautionary tale in which I want to encourage the rest of you to get help in a more timely manner than I did.  I could not walk, I could not see straight, and it was a nightmare.  Don't let this happen to you.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kristina
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« Reply #1 on: September 01, 2020, 12:54:43 AM »

Hello MooseMom, I am so glad that you are getting over this nightmare and many thanks for the warning, it is very  much appreciated.

I fully understand your hesitation to get medical help straight away, because there is always this hope, that it might be over soon and might be "nothing to worry about", especially when we don't really feel like getting into lots of action and just want to stay in bed and get better.

I very much appreciate your honesty in telling us of your experience and I shall keep it in my mind, whenever there is something "coming along", that feels not "quite right" and I shall also train myself to get medical help a.s.a.p. if there is something medical "coming along" that needs urgent action.

Many thanks again for this kind warning and may you recover a.s.a.p and best wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
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                                          ...  Oportet Vivere ...
cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: September 01, 2020, 03:31:10 AM »

O dear MM Iím very glad to read youíre getting better. Dehydration must be one of the major causes to loose kidney function. And any fluid loss due to a stomach bug very quickly causes dehydration. Iím so sorry you had to go through this.


As always I donít want to be a know-all, but just out of my own experience I would like to ask if you happen to already be taking a good Micro biota? Immunosups, and just longterm meds and treatments really messes up your bowels/intestines etc.


Lots of getting well vibes and lots of love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
tigtink
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« Reply #3 on: September 01, 2020, 05:44:24 AM »

So sorry you had to go through this, Moosemom. It sounds terribly frightening. I can relate to waiting to seek help. This COVID stuff has made me think twice before making that call because I know there is this extra layer of procedures we must go through. The last place I want to be right now is in a hospital bed, and I am reluctant to stir up a fuss that might lead me there. I hope you are feeling better and are relieved to know your kidney was not affected.
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SooMK
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« Reply #4 on: September 01, 2020, 10:52:36 AM »

I'm so glad you are ok. This is precisely the kind of thing I worry about...when is it time to call? Thanks for posting.
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SooMK
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iolaire
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« Reply #5 on: September 01, 2020, 01:32:43 PM »

Thanks for the update and the warning.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
MooseMom
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« Reply #6 on: September 01, 2020, 02:13:34 PM »

Thanks, everyone.  Tigtink, I have to say that not once did I think to be afraid to go to the hospital because of covid; I was so sick that I WANTED to go and knew I NEEDED to go.  But once I was stabilized, I was eager to leave to lessen my risk of catching covid cooties.

I've recovered nicely from the belly bug, but as this is 2020, the year that royally sucks, I've developed a new problem, and that is an impressively long blood clot in my right arm, apparently due to the IV.  Sunday night I'd noticed as I was trying to sleep that my lower right arm was sore, and the next day it felt inflamed and swollen.  By the evening, it wasn't getting better, so I contacted my PCP who introduced the idea that it might be a blood clot and that I should get to the ER quickly.  They did an ultrasound and found the clot (it was pretty obvious, apparently). Fortunately, it is not in a deep vein, but they gave me Eliquis that I have to take twice a day for the next month.  I am not totally happy with this, but so be it.  I'm feeling quite fragile and poorly today and am hoping it is not from the Eliquis but is instead just from the accumulation of events from last week.

Of course, I didn't even think about the possibility of a blood clot.  No, because since this IS 2020, my mind went right to a self-diagnosis of some sort of hospital acquired sepsis.   ::)  But at least I didn't wait to take action like I'd waiting with the gastroenteritis.

Oh, and despite all of this, my creatinine is 1.1, which is a very happy surprise! 
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Michael Murphy
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« Reply #7 on: September 01, 2020, 08:16:00 PM »

I learned the hard way that I need to be more proactive with my choices about health care 4 years ago.  I had what I assumed was a asthma attack that had left me having problems breathing.  After several days of using xopenx to no relief I went to my health providers urgent care and was diagnosed with a major heart attack.  I was rushed to the hospital and under went 2 angioplasties.   I was released over the next weekend and went to dialysis on Monday walking out after a four and a half hour treatment I reached my car and was unable to breath for about two minutes.  I called my cardiologist office and was told to go to urgent care,  I drove over and walking from my car into the center I again had a two minute period of being unable to breath.  I then spen 9 hours at urgent care and had 2 more episodes, a nurse was there for the fourth episode and began screaming I was in Vtach.   I was again rushed to the hospital and underwent a third 7.5 hour operation to cure my vtach and a fib..  shard the lesson I learned from this at 68 I am not immortal and I need to keep my medical team advised on my problems.  Better to bother them as to whatís wrong then to wait till itís a crisis.  Yes I feel like a whinney child but at least I am alive.  The fun part was everyone yelling at me for driving myself to urgent care since I was at the hospital I ended up in for surgery. 
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MooseMom
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« Reply #8 on: September 01, 2020, 09:01:53 PM »

Oh, geez, Michael Murphy!

I can understand how you would have thought you were just having an asthma attack, but I'm glad your survival instincts kicked in before it was too late.  That's definitely not being a whiney child!

Gosh, you are an ironman, driving yourself around like that despite the fact you ended up needing surgery!  I am in awe. :bow;  Probably wasn't smart, but it was awesome!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #9 on: September 02, 2020, 07:26:29 AM »

Moosemom--I had a terrible episode of vomiting and diarrhea a few months back and attributed it to the cyclospora outbreak from lettuce--I had eaten the brands listed. I didn't get tested. I was so sick that I laid on the tile floor of the bathroom all night as I was too sick to make it to bed, then I got hypothermic and had the shakes so I laid on the floor of the shower with the warm water running. Thought about calling an ambulance but was too sick to get to the door. Luckily I had stored some gatorade in case of COVID so I could sip enough to take my transplant meds. About 36 hours later I was hungry as a bear and recovered. Maybe that's what you had.
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PD for 2 years then living donor transplant October 2018.
MooseMom
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« Reply #10 on: September 02, 2020, 01:06:05 PM »

Moosemom--I had a terrible episode of vomiting and diarrhea a few months back and attributed it to the cyclospora outbreak from lettuce--I had eaten the brands listed. I didn't get tested. I was so sick that I laid on the tile floor of the bathroom all night as I was too sick to make it to bed, then I got hypothermic and had the shakes so I laid on the floor of the shower with the warm water running. Thought about calling an ambulance but was too sick to get to the door. Luckily I had stored some gatorade in case of COVID so I could sip enough to take my transplant meds. About 36 hours later I was hungry as a bear and recovered. Maybe that's what you had.

Well, that sounds dreadful.  That's a good idea to keep some gatorade in the house; I will pick some up the next time I'm out.

The hospital did every type of test to find out what I had, but they couldn't find any specific culprit.  They gave me meds to ease my dizziness, but they didn't want to stop the diarrhea because they felt it would be best to let my body rid itself of this mysterious bug.  The most important thing was to get rehydrated.  I was unlucky in that I was on holiday and not at home, so I needed outside help.  Fortunately, I seem to have recovered from whatever it was, and now my problem is this blood clot.  I have an appointment with a hematologist next week.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
MooseMom
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« Reply #11 on: September 02, 2020, 01:09:06 PM »


As always I donít want to be a know-all, but just out of my own experience I would like to ask if you happen to already be taking a good Micro biota? Immunosups, and just longterm meds and treatments really messes up your bowels/intestines etc.


Actually, I am not taking a good microbiotic, but I really should.  I know nothing about them, so do you have a suggestion?  I'd be really grateful for any info and advice you could offer me!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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a good year for Chevys

« Reply #12 on: September 02, 2020, 02:22:09 PM »

When I saw an infectious diseases doctor after my transplant he advised against any probiotics for transplant patients; there are millions of live bugs in every dose, and our decreased immunity may make them dangerous. I would ask your transplant team before taking anything like that.
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PD for 2 years then living donor transplant October 2018.
MooseMom
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« Reply #13 on: September 02, 2020, 02:39:33 PM »

When I saw an infectious diseases doctor after my transplant he advised against any probiotics for transplant patients; there are millions of live bugs in every dose, and our decreased immunity may make them dangerous. I would ask your transplant team before taking anything like that.

I had not considered that, so thanks very much for that advice!  I'll do that.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #14 on: September 03, 2020, 09:13:05 AM »

I was on a probiotic before my transplant. After the transplant I asked about it and was told to discontinue it because the body might see it as bad bacteria and react to it.
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cassandra
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« Reply #15 on: September 03, 2020, 11:23:14 AM »

Wow thanx guys for giving that info. Never considered.


 :Kit n Stik;
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
cassandra
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When all else fails run in circles, shout loudly

« Reply #16 on: September 03, 2020, 11:30:49 AM »

Is it poss for transplant people to take digestive enzymes?
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
frugallyzing
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« Reply #17 on: September 28, 2020, 12:26:15 PM »

I'm glad you're okay now, can't imagine what you've gone thru. Thanks also for the warning
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kristina
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« Reply #18 on: September 28, 2020, 01:32:34 PM »

I was on a probiotic before my transplant. After the transplant I asked about it and was told to discontinue it because the body might see it as bad bacteria and react to it.

I was told the same and it was also stressed, that whenever I buy food I need to read all the labels at all times & to buy - for example - only pasteurised food (including pasteurised honey etc. !!!) and not to touch any dairy products like Yogurts, Quark, etc.  and the only milk I can put into my coffee and/or drink is Almond milk etc.

Very boring, I know, but after a while it is not that noticeable any longer and with a bit of luck one gets used to the "new taste" etc. But most important is the fact that soft cheeses (i.e. Camembert etc.) are not to be eaten at all. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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