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UkrainianTracksuit
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« on: September 12, 2020, 06:32:42 PM »

I know that grapefruit is to be avoided and that it significantly influences the amount of tacrolimus (as well as cyclosporine, everolimus, and sirolimus) in the blood. With this in mind, I avoid it at all costs.

However, my husband and I attended a "socially distanced" dinner party for his work and I unknowingly ate grapefruit. The hostess stated it was a mandarin filling in a cake but after I ate about what would be a little over 1/4 cups of filling/compote I realized it tasted grapefruity too, and demanded to know from her. To my horror, she stated that yep, there was some grapefruit in it. Grapefruit pulp (mashed up fruit segments with sugar) to be exact.

Naturally, I am having a panic moment over here and unsure what I should do, as all I can see is nephrotoxicity blazed across all reliable information. My egfr is always around 100 and my tac levels are right where they should be. It's obviously too late to be ringing the tx clinic and on a weekend to boot.

Insight?
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MooseMom
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« Reply #1 on: September 12, 2020, 08:30:00 PM »

Is there a tx coordinator on call at your center?  In my early post tx days, I had several similar panicked moments that seemingly always occurred on a Friday night, but there was always a tx coordinator on call to talk me off the ledge.  (One Saturday night I took my tac 6 hours too early.  Tx coordinator on call told me how to manage my dosage for the next 24 hours.)

Aside from that, I truly do not think you have anything to worry about.  I do not think that one small serving of grapefruit will make that much difference, but in saying that, I do understand your concern.  I'd be more worried if you had unknowingly ingesting grapefruit every day for a week.  I don't know anything about any of the limuses you mentioned other than tacrolimus, but if I had unknowingly eaten some grapefruit pulp on just one occasion, I would not be too concerned (despite being quite paranoid about such things).

Even if your tac level fluctuated, it would be temporary.  Your egfr is around 100?  Jesus, that's amazing!  Mine's never anywhere near that!  LOL, I think you'll be OK!  I think you have some wiggle room!

God, those panic moments are awful.  Makes my tummy twitch just thinking about it.  I hope you're feeling a bit calmer by now.  Let me know what your clinic says if you get to talk to anyone.

« Last Edit: September 12, 2020, 08:33:32 PM by MooseMom » Logged

"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 #2 on: September 12, 2020, 10:03:35 PM »

Your transplant center should have given you a 24x7 support contact.

I was given the dispatch number at the hospital and told to have the on call transplant surgeon or renal fellow to call me if I needed off-hours help. 
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UkrainianTracksuit
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« Reply #3 on: September 13, 2020, 04:07:39 AM »

No direct emergency contact here... just been advised to call the hospital switchboard and ask for the urology fellow on call to get back to me. The two times that I had to do this it worked out okay. Will do exactly this this morning.

And yes, MM, I feel calmer after I read some studies that stated it required long term ingestion/increase of medication levels, so yes your hunch is correct. Will still speak with someone to walk me off the ledge though. My mind automatically turns to AKI's which scared me in my pre-dialysis years and I don't want to injure the new little bean-o.

Previously, I was provided with a list of pop and drinks that may even just have grapefruits extracts, like Powerade?!? (citrus kind) to avoid so it was one heck of a night reflecting on all this.

I will keep all this stress in mind when I have to write a passive aggressive thank you note for the dinner.
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Simon Dog
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« Reply #4 on: September 13, 2020, 06:22:51 AM »

I'm surprised they told you to ask for urology rather than nephrology.
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« Reply #5 on: September 13, 2020, 06:44:39 AM »

I agree with Moose Mom-what's done is done, one episode doesn't amount to anything; and I am now thinking about how good cake with fruity filling must be! Sounds very very good to me!
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UkrainianTracksuit
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« Reply #6 on: September 13, 2020, 07:38:07 AM »

I'm surprised they told you to ask for urology rather than nephrology.

Iím followed by urology because I have a SPK. Technically, I donít deal with tx nephrology department at all and only see local nephs to do blood work every three months.

They are going to fax over routine tac monitoring blood work to at least see where I am now and go from there. The on-call fellow messaged the tx fellow (great guy) who I likes to be proactive.

And yes Cupcake, the cake was delicious. Had it not set off alarms, Iíd probably have ate the whole thing. Life is about being grateful and I donít like to say ďitís unfairĒ, but in matters of cake, I can pout.
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MooseMom
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« Reply #7 on: September 13, 2020, 08:37:02 AM »


I will keep all this stress in mind when I have to write a passive aggressive thank you note for the dinner.

This is the best therapy!

I'm glad you're feeling a bit calmer.  Things like this will happen again because we none of us have total control over our lives.  Incidents like this are part of it.  Being extra super duper careful is necessary, obviously, but not always entirely preventative.  And the knee jerk reaction of oh my god my kidney has been poisoned and will explode will undoubtedly occur again somewhere along the way!

Let us know what your blood work shows!  I'm really curious how much impact one small incident like this can cause because I really do not know.
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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."
UkrainianTracksuit
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« Reply #8 on: September 22, 2020, 04:06:48 PM »

Hey, for anyone interested, I wanted to share what my blood work looked like after the incident. Not like anyone was waiting with baited breath, but as much as I wanted to get to this sooner, my husband royally messed up his back last Friday. He's been stuck in bed with all these little demands... get me this, get me that, check my temperature.. so anytime I sat down, I got called again.

Anyway, so tac trough is between 5Ė8 ng/mL. Prior to the grapefruit experience, I was right in range with 5.3 ng/mL. However, my first reading after that ingestion popped all the way up to 11.8 ng/mL which was pretty frightening. Didn't have such a level since the days right after surgery. It was only with playing around with the dose (doctor supervision, didn't do it myself) and two more samples that it evened out. Naturally, I was advised that people metabolize medications differently, blah blah blah, calm down, but it did teach me a lesson. Obviously nothing bad happened this time, but just imagine if this was long-term out of full blown knowledge of doing something or either in neglect, neprotoxicity is obviously possible. They are gonna do a full work up when I go for appointment soon but with COVID on the rise, who knows if I will see the appointment anyway.

Please excuse my terrible phrasing and typing. I had some wine with dinner and some after. Maybe more than some.
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MooseMom
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« Reply #9 on: September 22, 2020, 07:09:39 PM »

Actually, I was kinda sorta waiting with baited breath for an update.  Temporarily incapacitated husbands can be real weenies.  Thank you for taking the time to update us.  I'd bet that most of us have found ourselves in similar tac trouble at one time or another.

This is exactly why we tx patients need to be on the ball as we navigate through life.  We never know where danger may lurk.  My tx coordinator told me a few years ago that she's always astonished to see how many patients take their meds incorrectly; for whatever reason, they don't know any better.  They probably don't read the "fine print".  It is a lot of information to navigate, but it's really important.

Obviously, UT, this does not describe you, but it does go to show that even those of us who are really careful can find ourselves in a tough spot not of our own doing.

Anyway, I'm very glad to hear that all is well and that your concerns have been addressed.  Your tac trough was pretty predictable; high at first, and then after some temporary adjustments, back down to where it should be.  That's outstanding news.

Did you write your passive aggressive letter?  LOL.
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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 #10 on: September 23, 2020, 08:30:37 AM »

Yes, I sure did write that passive aggressive "thank you" note. It had all the goodies, like "Dear Host and Hostess" rather than their names and other tidbits such as, "It was a delightful soirťe until you carelessly served dessert. Typically it is the duty of the host and hostess to be informed of dietary issues of their guests, but I digress from your excellent hospitality."

Anyway, can this year get any worse? Let alone week?  :banghead;

Rather than send me out to the pharmacy last night, my husband drove to the nearest one, where he took out his bumper on a concrete divider. Though he is not taking any narcotics, he is in a lot of pain and not thinking straight. Lucky it was his car and not someone that got hurt. Naturally, I complained to him about that. So, after calling his insurance (yay, accident forgiveness), this morning, we (yes, he specifically asked me to go with him as co-pilot like in rally car) had to take it in for estimates. He bent over while there, made a big owwww, and made things worse.

From there, he convinced himself to go to the walk-in clinic in a pharmacy, rather than the emergency department, so he could telecommute with a doctor. He sat there in pain, I shopped around, thank goodness for tap on his card because I didn't bring my purse.  ??? ::) Doctor says that they will call in an x-ray and order a muscle relaxant...still waiting for both of those orders.

But this does have a transplant point, so I am not totally off topic. He was supposed to drive me to my tx appointment hours upon hours away. Finally, he said that he didn't think that he could drive me there. (We decided on driving because of well, COVID, rather than flying). Makes total sense because the man can barely stand up or sit (or lay down for that matter) without significant problems. Now, do I really want to fly or cancel my appointments for a second time this year? (First time cancelled by them due to government regulations, this time possibly by me..)
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MooseMom
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« Reply #11 on: September 23, 2020, 12:45:38 PM »

Dearie me, that all sounds woeful!  I don't know whether to laugh or cry on your behalf.  It just sounds funny on the surface.

Gosh, what DO you think you'll do about your appointments?  Are they just regular checkups/labs, or are you having a specific issue?  Your case is quite complicated, so I can see where you might not want to cancel, but what reasonable choice do you have at the moment?  Could you maybe call your clinic, outline your current circumstances, and then see what they suggest?  I'd be willing to bet that they wouldn't want you to have to fly.
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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 #12 on: September 23, 2020, 05:04:06 PM »

I really don't know what to do/think. To be honest, I internalize my anxiety so my stomach turns into a ball of nerves and I want to barf.

Air Canada has all the "basics" in check. Mandatory masks, electrostatic spraying, infrared temperature checks, yadda yadda. I know that seat maps are quite unreliable, but one flight that I would book, if I do book, is barely a quarter full with the larger plane that is planned for take off. Even if they do use a smaller aircraft, it wouldn't be half full. Will check it the night before and book then if I make up my mind? That's 4 days...

My city has 0 active cases while the destination city-area (suburbs included) has 80 active ones (not new, just active.) But the Prime Minister just announced that we are technically in the second wave.

I'm torn between cancelling. When I spoke with infectious disease late last month, they stated they would look at my file and only bring me in if they thought they needed to. But, that's just monitoring. And tx is just a check-up/follow-up. They do pull a lot more blood than I have done with my regular three month done locally. It's not imperative that I go, but you know..... I feel like this could be my last window of the year to go, before it turns into a year that I have been down there. And for some reason, I'm unsure why the doctor hasn't embraced teleconferencing.

ARGH!
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MooseMom
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« Reply #13 on: September 23, 2020, 06:40:18 PM »

I'm in just about the same boat as you, but I'm 8 years post tx, and my annual appt isn't until early Dec, so I don't have the time constraints (yet) that you do.  I get my "big labs" done just before my appointment, and I actually get the results before I travel up to my clinic for the office visit, so for me, the trip up and back hasn't really been worth it since my labs have been pretty steady for quite some time.  Like I've said before, closer to the time, I'm going to ask about just making my appointment into a teleconference.  I don't feel all that great about being in a waiting room with lots of staff and other patients.

I'm not all that worried about flying, rather, my concern is having to wait around in various departure and arrival terminals.

Still, I can see how you'd feel this could be your last window of opportunity for the year.  If I was in your situation, I don't think I'd feel all that great about having to wait an entire year for a visit, but then again, I wouldn't want to expose myself to covid cooties unless it was absolutely necessary.

I get that barfy, ball of nerves feeling, too.  I hate that.

Let me know what you decide to do and how you reached that decision.  Both plans have their pros and cons.  I suppose a lot depends upon whether or not you have some specific concerns that you feel could only be addressed in an in-person appointment.

Good luck!
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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 24, 2020, 01:19:21 AM »

Hello Ukrainian Tracksuit, I am very sorry about your current situation and just want to send you my best wishes to make the right decision. I can well imagine your predicament and the difficulty of making the right decision and I feel for you and wish you the best of luck! Perhaps you could contact your tx-team beforehand and explain the difficulty of knowing what to do?

What does your instinct tell you?

I was in a similar situation when I felt a problem with my tx-kidney coming along and instinctively felt, I needed to see the doctor a.s.a.p. and fortunately it was the right decision and after two face-to-face-visits and two big check-ups it hopefully has started on its way to be sorted out. I just followed my instinct and felt, that I needed to try and sort it out, whether I liked it or not and whether it was risky or not, but I felt I needed to have it medically checked and try to sort it out a.s.a.p. Mind you, that was my own situation and it certainly did not include the risks of public transport, travelling etc.
Please let us know of your decision and how "things" are going for you and also your husbands recovery and I keep my fingers crossed for you both !

I send you both my good-luck-wishes from Kristina. :grouphug;
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UkrainianTracksuit
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« Reply #15 on: September 24, 2020, 04:55:54 PM »

Thanks for the understanding, MooseMom and kristina.

As for my instinct, to be honest, I feel that it is a little off lately because I don't even trust my gut feelings anymore, due to pandemic precautions. It has been so drilled in to avoid people and we have been mostly safe in our little bubble here. So, I'm not quite sure what is paranoia versus my reasonable instinct, if that makes sense.

I've gone to the dentist twice with no issues, but they have been wrapped head-to-toe in PPE and the waiting room was empty both times. They like to take high risk people in first thing. It would be a similar situation with one tx-related appointment. Short waiting time in a slightly dotted with people waiting room early in the morning. The other one, not so much.

As for the airport terminal, that is a really good point that I hadn't considered. Even prior to pandemic crazytown, I found spots away from people. The terminal that I would fly in/out of is rather small as it just handles shorter domestic flights, and the airline has cancelled 400+ flights, so I am really unsure what the scene on the ground is. Still, people are people, and they are everywhere.

All of that said, I had my first real experience with a waiting room today. I accompanied my husband to the ER. They separated people between covid/cold/flu /fever symptoms and those for unrelated things. It was a small cramped section. My husband apologized and said he should have gone alone. (I would like to point out my husband doesn't understand that it is acceptable for local people here to seek medical help dressed as sloppy as they like, meanwhile, he had to actually think what he would wear so they took him seriously. Cultural lesson of the day.)

They moved us to another room where he got promptly called in and I sat for close to 5 hours. It was great while it was mostly empty. Plexiglass barriers every three seats and people knew to avoid others. But then it started to fill up...

After all these years of dealing with health care, it has never felt so odd to be around people.
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MooseMom
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« Reply #16 on: September 24, 2020, 07:43:51 PM »

Honestly, UT, I don't think that you will be 100% comfortable with any decision you make.  There are just too many unknowns because we none of us can control the actions of other people.  I truly do not know what I would do in your circumstances. 

They always say to hope for the best but prepare for the worst.  In my mind, "the worst" would be to catch covid-19, and I don't know how any transplant patient could reasonably prepare for that.  Your husband would have to prepare for that, too, should you become ill.

I dunno.  I personally feel like I've worked too hard for too long to risk everything to a stupid virus, a risk that I can mitigate to some degree.  Only you can decide how risk averse you are under these particular circumstances.  You're right in that your clinic will take every precautionary measure possible to keep you safe, but yeah, people are people, and you don't know where they've been.

And yes, it does make sense to not be sure where your "gut" ends and paranoia begins.  But you are smart and very self aware, and I am not sure any tx patient can be too paranoid in these covid times.

I hope your husband is OK!

Let me know what you decide to do...or not do.
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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 #17 on: September 25, 2020, 02:02:04 AM »

Thanks for the understanding, MooseMom and kristina.

As for my instinct, to be honest, I feel that it is a little off lately because I don't even trust my gut feelings anymore, due to pandemic precautions. It has been so drilled in to avoid people and we have been mostly safe in our little bubble here. So, I'm not quite sure what is paranoia versus my reasonable instinct, if that makes sense.


I accompanied my husband to the ER. They separated people between covid/cold/flu /fever symptoms and those for unrelated things. It was a small cramped section. My husband apologized and said he should have gone alone. (I would like to point out my husband doesn't understand that it is acceptable for local people here to seek medical help dressed as sloppy as they like, meanwhile, he had to actually think what he would wear so they took him seriously. Cultural lesson of the day.)



Hello again UkrainianTracksuit,
I am sorry that this pandemic has made you feel a little unsure about your instinct right now and hopefully it comes back a.s.a.p., because our instinct is so important in these unsettling days, especially when we get contradicting news about this corona-virus every single day. For example: Here people are still allowed to go to Pubs as they like  :urcrazy; but because of the Corona-Virus they are ordered (by the government) to leave Pubs at 10.00 pm to make sure they won 't get infected with Corona-Virus ... As you can imagine, I am not the only one who feels confused about such new regulations, especially since it would appear that such a deadly virus won't "keep itself" to certain hours of the day ... or the night??? :urcrazy; From such a little example you can see how crazy "things" have become and my husband and I certainly try our very best to make sure we don't come across any such crazy-madness.

Unfortunately I have another urgent medical appointment soon and I shall "wrap myself up" as protectively as possible with my face-mask and other secure "recommendations" i.e. use lots of disinfectant etc. and hopefully "things" go alright. I try and do as much as I can to protect myself and that is all I can do ...

I agree with your husband when he cannot understand how some people seek medical help dressed as sloppy as they like and it is very sad to come across that. It is so important to make sure and dress properly and respectfully, whenever going out of the house and such a policy is not only important to show respect towards other people (i.e. medics), but it also reflects our self-respect and makes sure to keep in mind at all times for anyone with medical problems that if they "let go and go sloppy", that surely would be the way to lose all self-respect and go downhill straight away as a result?

Please let us know what you'll going to decide and how "things" develop from there and hopefully everything goes alright for you both, ok? Please take great care and I send you my good-luck-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.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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« Reply #18 on: September 29, 2020, 07:52:17 AM »

This is more of a rant post than any real update.

I booked the trip and I had one of my appointments today, specifically because I had concerns.

The originally barely booked plane turned out to be almost full but the terminal was pretty dead. More than 6 feet between us.

I was the only person in the waiting room so besides the plane, I avoided a bunch of contact.

To be blunt, the appointment wasnít worth it at all. There are a new round of fellows so naturally the one I had had to lecture on things that have been discussed since the beginning of time. He had nothing left to say, as there was a pause, he kept going through my file, and brought up anything to hear himself talk.

My regular transplant doctor was in a mood so the natural arrogance was to the max today! Dismissed my concerns (actually why I went down) so nothing was solved, at least today.

They honestly didnít see much of a problem with travelling during corona. Apparently, thereís no real evidence that tx patients catch it easier (knew that)  or have a worse outcome. Besides the thoughts of getting other people sick or being a drain on the health care system for recklessness, why have we shut ourselves off from anything fun then? (Obviously this is because weíre not senior citizens.)

There are more appointments ahead so I hope they are worth the trip.

I am kicking myself that I went. I left my husband home alone only for him to find out that he has fractures in his back, and he isnít receiving the proper pain management. At least I cooked him a bunch of food ahead of time so that heís eating, but he is struggling.
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« Reply #19 on: September 29, 2020, 08:42:53 AM »

Sorry for your crappy visit. 

I did an in person visit with nephrologist and that allowed him to touch me, but really it seems like the visits are to go over labs so the teledoc is great.  I wonder what the value is of letting them push on the belly and feel the kidney.

I find this interesting as we are going to do a trip at the end of October.  My assumption is my transplant nephrologist would via a flight risk as high. One flight stat I liked is someone posting stats that the infection rate of flight attendants its lower than the general population.
They honestly didnít see much of a problem with travelling during corona. Apparently, thereís no real evidence that tx patients catch it easier (knew that)  or have a worse outcome. Besides the thoughts of getting other people sick or being a drain on the health care system for recklessness, why have we shut ourselves off from anything fun then? (Obviously this is because weíre not senior citizens.)

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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.
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« Reply #20 on: September 29, 2020, 09:39:28 AM »

This is more of a rant post than any real update.

I booked the trip and I had one of my appointments today, specifically because I had concerns.

The originally barely booked plane turned out to be almost full but the terminal was pretty dead. More than 6 feet between us.

I was the only person in the waiting room so besides the plane, I avoided a bunch of contact.

To be blunt, the appointment wasnít worth it at all. There are a new round of fellows so naturally the one I had had to lecture on things that have been discussed since the beginning of time. He had nothing left to say, as there was a pause, he kept going through my file, and brought up anything to hear himself talk.

My regular transplant doctor was in a mood so the natural arrogance was to the max today! Dismissed my concerns (actually why I went down) so nothing was solved, at least today.

They honestly didnít see much of a problem with travelling during corona. Apparently, thereís no real evidence that tx patients catch it easier (knew that)  or have a worse outcome. Besides the thoughts of getting other people sick or being a drain on the health care system for recklessness, why have we shut ourselves off from anything fun then? (Obviously this is because weíre not senior citizens.)

There are more appointments ahead so I hope they are worth the trip.

I am kicking myself that I went. I left my husband home alone only for him to find out that he has fractures in his back, and he isnít receiving the proper pain management. At least I cooked him a bunch of food ahead of time so that heís eating, but he is struggling.

Hello UT, I am very sorry about this terrible experience you had with your medical appointments. The first doctor sounds like a junior who might have felt a little overwhelmed by your medical knowledge about your situation. It often takes an experienced older medic to understand fully, that we only know so much because we are so desperate to survive...  and your regular transplant doctor, well ... Hopefully you have better luck with the other appointments, fingers crossed !

And fingers crossed for your husband to fully recover and hopefully he gets medical attention a.s.a.p. because, as we all know, back-problems need to be taken very seriously and he needs all the medical help he can get! Best luck to you both 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.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #21 on: September 29, 2020, 01:01:34 PM »

Ugh, I'm sorry to hear this, UT.  Still, it did make me giggle because I could just picture you rolling your eyes at this doctor pretending to be as knowledgeable as you. ::)

That's interesting that the plane was more crowded than the terminal.  Who would have known?

I'm aggrieved that your concerns were not addressed properly.  What exactly did he say?

Do your other appointments require travel?  I apologize if you've already mentioned this; I don't remember.

Let us know if/when you have updates.  I'm concerned that you have a concern.
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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."
UkrainianTracksuit
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« Reply #22 on: September 30, 2020, 06:35:53 AM »

iolaire: Itís funny because the main tx doctor doesnít push on the organs, but infectious disease does. Agreed that itís mostly to go over blood work so why havenít they embraced telemedicine for this regard? They are all about research and cutting edge of science, so Iím confused.

The one thing that I didnít mind about the plane is that people were concerned for their own well-being first, so they made sure to physical distance and if someone booked a single seat, the one beside it was left open. So, I believe that flight attendant stat. The airline handed out care packages with masks, water, gloves and sanitizer, info about COVID testing and.....pretzels.

kristina: Thank you for your kind words. I understand that physicians are reluctant to prescribe narcotics these days, but there are times they are needed. My husband is a retired military officer and did striking sports so he is not soft on pain, but he is legitimately in pain. This morning he told me itís going down one of his legs, so he plans to ring the doctor (again).

MooseMom: If there is one thing I loathe about doctors (especially those just in like the first week of their fellowship) are those that nitpick for the sake of talking to hear themselves talk. No, I donít have advanced medical degrees nor do I work in the field, but Iím not an airhead either.

As for the terminal (arrival one that is), I think most people on the full plane left the airport (got to their destination) or went on to catch a busier connection. The terminal I arrived in only had 2 short route domestic flights going out. Food kiosks and even the small Relay in that terminal was shuttered for the time being.

As for my concerns, they were completely brushed off. The gastro issues (local team said to definitely talk to tx about medications because theyíve seen patients need a stronger stomach pill) were brushed off as ďmentalĒ or ďanxietyĒ which ďisnít their problem.Ē Naturally when you tell someone you suffer from neither of those things on a recurring basis (Yes, I get anxious at times, events, but they always subside with solutions or problems solved, It is not a chronic thing), it only augments their view that itís all in my head. So, Iíll go home right back where I started. My doctor is naturally arrogant, but usually, he has never been that cocky before.

Also, information about how cortisone injections could impact my immunosuppression was overlooked. There could be no interference at all, but I just needed to hear from them, because I know the doctor at a future appointment wonít have knowledge like them. Whatever.

This is a side point but I really hate these mental health trap questions. No, Iíve not been diagnosed with any such condition. Besides being Russian, which is its own mental disorder. But how can a medic ask, in my estimation, am I as healthy as my peers, as a way to determine if I am depressed?! Maybe that works for the over-50 crowd, but I always say NO, not because I am negative, but most people I know are gym rats with working organs that donít need the Spanish Armada of medical advice about pregnancy. They just do it or it happens. (This topic wasnít brought up again but itís an example in general.)

My other appointments are at the same hospital, so Iím already in the area. Just need to travel home on Friday. My husband said to enjoy the silence now because once home, itís back to his whinging.
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« Reply #23 on: October 01, 2020, 10:08:39 AM »

UT, I get asked about gastric issues all the time.  The cocktail of immunosuppressants often cause them.  I've always said, "no" to this question, but the more I think about it, I think the answer is "yes".  I starting have some minor problems once I started taking phosphorus binders about 10 years ago, and I've realized that I still have them.  I've lived with it for so long that it is now my new normal.  Nothing major, but I find I need to avoid spicy foods (bummer), and I need to eat slowly (bummer, because I often find I wolf down lunch so that I can get back to whatever else I need to be doing).  Anyway, my point is that I'm wondering if maybe the drugs you're taking might be the culprit.  I don't think I've ever taking "stomach pills", and maybe I need some!

Ooooh, this business of the doctors dismissing your concerns, chalking it up to be "anxiety" or "all in your head" is absolutely infuriating!  How condescending and, frankly, unprofessional.

I think I've mentioned that I had to be hospitalized last month (in another state as I was on holiday, which is SO 2020) because I came down with some sort of stomach flu and had to be re-hydrated via IV fluids, and that the IV caused a blood clot, blah blah blah.  Anyway, I was instructed to make an appointment with a hematologist for a follow up, and when I did so, I got all of the mental health questions.  It was frankly bizarre.  I've been over 50 for a while now, and this was the first time I've ever been questioned in this regard.  I wonder if doctors are trying to assess the mental health of their patients during covid?  I just don't know, but it was odd.

Good luck with the rest of your appointments, and I hope your travels back tomorrow are safe.  You need to stay strong for the whinging to come!  LOL!  At least you've been forewarned!
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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 #24 on: October 03, 2020, 09:56:21 AM »

They might have been prescribed in your case too but you might not have needed them (big assumption here, sorry), but heartburn/ulcer prophylaxis was prescribed at the beginning of the tx regiment, because (as Iím often told) the drugs are hard on our tummies. In the last year, Iíve developed some nausea that gets uncomfortable. After I mentioned it locally, I was advised to address with the tx team as theyíve (well, the renal only team with whom theyíre closer, not urology) had patients that needed a stronger medication. For someone, it was within the first year post-tx.

Well, guess what? I did mention it and we know how that turned out.

Why does a nurse even sit, take notes, ask about any issues if they donít look at any of it?

The other thing that doesnít sit right with me was the flippant arrogance over corona. Such as, ďThereís no real evidence that tx patients are infected more or have worse outcomes, but thereís the chance of rejection if they need to lower immunosuppression.Ē Yes, Iíve noticed that in my own research, but for real, sit back and think over that loaded statement. Like chance of rejection is a ho-hum oh well moment. The med team may have stellar education and generally easy to deal with but the arrogance that day was off putting.

But you know, I am snap, crackle and pop crazy. All in my head.

You are probably correct that doctors (for the most part) are putting out feelers for the mental health of patients during corona. However, in your case, it even strikes me as odd with the hematologist. Like, stay in your lane, doc. Especially when there was a track record in your case of an illness, blood clot, and hospitalization. All very real things, so why the unnecessary questions?!

I made a point of pointing out that the pandemic hadnít changed much for us. Weíre still working (my husband was back at his work spaces until his mishap) and we donít have a huge social circle to impede on our mental health. But still, a banana short a split over here.

Other than that, my other appointments were great, besides additional blood draws. The specialist actually listened and answered my questions in depth. But was it worth the $$$ spent for the (almost) week? No.

This experience though has taught me to be even more proactive in my care as to not contact the fellows again. I am bummed that the excellent one finished his term but happy that heís on to bigger/better things though. For example, Iím pretty sure I ingested pomegranate juice at the hotel bar, so probably a small amount, but Iím not panicked. I wouldnít call for advice anyway now after this experience.

As for my husband, he is doing better, but not 100%. However, even he had a WTF medical experience here. His doctor told him to make a third trip to the ER for assessment, meaning an ultrasound. Did he get one? No. They sent him to the walk in clinic section (again). He saw a known quack as his overseeing physician. My husband burned himself with the hot water bottle (he knew it) and it got a little infected. The doctor told him it was SHINGLES. Naturally, he was shocked and was worried for my homecoming (until he realized it wasnít shingles). He was like where do I go? What do I do?

The quack prescribed diclofenac sodium/misoprostol with a BUNCH of NSAIDs, which didnít help the pain, but made his stomach sick. He stopped taking them, only to rely on a muscle relaxant and Tylenol. He just pastes his back with Icy Hot and Absorbine patches. Keep in mind this is going on 3 weeks soon.

Anyway, he managed to pick me up from the airport, and the whinging started. After I gave him hell, he has stopped, though he is being annoying with round the clock Icy Hot rubbings.
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