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UkrainianTracksuit
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« on: October 22, 2021, 05:51:10 PM »

It seems as though I missed so much in over a month! Potential calls for a kidney, a check in by Pea Tea, a discussion on liver enzymes, and grafts even though this place moves slow.

I just need to decompress from the month from Hell. And hey, it's still not over, so who knows what awful shit will happen in the next 9 days.



The good news is that both my organs are functioning beautifully. My visit to the transplant clinic out of town went as smooth as can be and they said based on current outcomes, I've basically been the one of the patients with the best outcome. Outstanding function, few side effects. And I got my high dose flu shot this year without any problems! 


The rest is all downhill.



I've been contracted for a full-time position with a US firm dealing with a client here north of the border. (As a consultant.) Thank goodness it is short term (ends at the end of the year) because the people are awful. They lost my first pay check. They used a wrong routing number. I was adamant that I received no money while their finance department was adamant it was deposited. Imagine hiring someone to complete a (financial) forensic review and then accusing them of not telling the truth in regard to payment! After much tracing, it was located and in the meantime, I had a lawyer draw up a statement. Peak drama here or so I thought.



Then, my husband was accused of wrongdoing at his place of employment. (No, not sexual harassment, as that seems to be the big one these days). Obviously, I can't talk about it because it's not my business, but this was basically one of the worst times in our married life (and we've had some doozies!). We weren't arguing, but were stressed to be max, because you know, there would go his job and worse! But, it was serious, and because he's "only" a permanent resident from a country people aren't too happy with and have loads of stereotypes about, the accusations flew. His boss didn't believe what was said, but HR (human resources) had to look into it because you know, protocol, which I understand 100%...but still. Not only would he have lost his job, but there would have been charges. Only very recently was he cleared.

But yesterday was the cherry on top! My husband was in a car accident in our new "smaller than his tank" sedan. It wasn't his fault so I couldn't yell at him. Still, the car might be a write-off (I think it will be) because the other party really did a number taking out the back end and front driver's side. Basically, he was driving straight and this SUV from a side street came out and hit him. Distracted driving - on a cell phone. Air bags deployed and he's every shade of purple today, even at the end of his perky "new" nose! He wanted to save money and leave his G-wagen parked (gas prices, ugh), but this wouldn't have happened if he was in that giant metal box!

I swear, I should be automatically certified as a crisis negotiator because translating/explaining/trying to figure stuff out between him and the insurance agent was right up there with I don't know..insanity. We had a funny moment this morning though. The right side of his chest (pectoral muscle?!) is REALLY every shade of purple that it's quite disturbing. He told me to take a picture of it, but asked, "Do I need to cover my nipple? Or are male nipples okay in close-up photos?" So now I'm walking around with photos of a purple pec on my phone..

Really, I feel for him, because he was just starting to feel awesome with a new drug - Cimzia. It's an immune suppressant (in some form) so now that's both of us. 



I'm just petrified to start the next week to see what awfulness comes our way.
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MooseMom
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« Reply #1 on: October 22, 2021, 08:14:19 PM »

OMG, YouTea, once again your stories about very serious stuff have left me giggling.  Your hell can be a real comedy review.   :rofl;

Thankfully, though, your organs are doing their organing, and your husband seems to be on a med regime that hasn't made his brains fall out or his dangly bits droop into last year.  But having to deal with an HR issue at work is serious business, and I am really sorry that he was made to go through whatever sort of investigation was thrown at him.  That must have been a frightening time for the both of you.

Insurance agents can be evil lying creatures, can't they!  I could write a book on that subject.  But hey, if they want pics of your husband purple nipple, well, insurance agents work in mysterious ways.

I am astonished that the people who have contracted you as a consultant would accuse YOU, with your special skills, of a financial misdeed.  That's what made my iced tea blow through my nose. 

Maybe you should both live under a rock for the duration of next week.  Or then again, maybe your bad luck has subsided by now! 

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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."
cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: October 23, 2021, 12:53:19 PM »

Jeeeez that was a month from hell. But your organs are working well, and that is a big deal. I’m sorry your husband was in an accident and is now ‘coloured’ but not broken. Your new job sounds peculiar to say the least, and you must be really pleased that’ll finish before the new year.
I wish you all the best and strength for next week.


Love, Cas


 :cuddle;
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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
2020 start Gambro AK96

       still on waitinglist, still ok I think
iolaire
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« Reply #3 on: October 23, 2021, 05:54:34 PM »

Dang keep strong.
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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.
kristina
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« Reply #4 on: October 24, 2021, 12:54:01 AM »

Dear UT, I am so sorry for these awful experiences, but sometimes everything seems to get crowded into a very short period of time and hopefully you and your husband get a chance now to recover from these stressful days. Your husband sounds very sweet with his concerns about "what to cover up" for the evidence-photos and hopefully everything gets alright again for both of you in the future.

At least, as you have pointed out, you are still off dialysis ... I shall keep my fingers crossed that next week won't bring you further unwelcome surprises but instead brings you lots of restfulness and better luck ...

I send you both my best wishes and keep my fingers crossed from Kristina. :grouphug;

P.S. The mentioning about your lost paycheck sounds a bit suspicious and makes me wonder ...   Please take great care and be very watchful at your working-place and I send you both good luck-wishes!
« Last Edit: October 24, 2021, 01:04:13 AM by kristina » Logged

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 ...
UkrainianTracksuit
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« Reply #5 on: October 24, 2021, 09:29:40 AM »

Thank you everyone for the kind sentiments!



It's true that I need to be really thankful thank my "organs are organing"  :2thumbsup; and I am! Life definitely has its moments and streaks of bad luck have to end. (Right?)

I know that people have "cases of the Mondays" but I legitimately have anxiety over the beginning of the business week tomorrow! At least my husband isn't working at the moment (or leaving the house) so it's all on me. Eeek.



Waiting to hear from insurance adjusters and dealing with my superior who I think thinks I am a dud are giving me stomach knots!

The US firm is legitimate (been in business for a very long time, respected) but their person handing out payments completely dropped the ball. I'm supposed to submit my invoice for work this month soon and I am highlighting the routing number and all that fun stuff. If they mess up a second time, I don't need this stress.

Bruising on my husband has gotten worse as expected, but cass is right on: he's not broken! 

That meant more photo shoots of odd body parts! I didn't really expect to take photos of his abs in my life, but alas there they are, on my phone. Waiting to hear from the insurance company to know what happens about the smashed car to know when to green light looking for another smaller car. So, that's a moment right now too.



I swear we're both ready to throw our hands up in the air about life here and move to some village. There is a ghost town in his oblast called Kadykchan so we could at least have a roof over our heads. But you know, I NEED my medication, and well, he won't feel good without his. His new medication is cool because he'll basically get an injection every 4 weeks instead of pills every day. 

I even looked up renal services there in case this streak of bad luck continues! Seems as though there has been progress: dialysis AND biopsies in recent years! https://vesma.today/news/post/7229-v-magadane-vrachi-vpervye-stali-provodit-biopsiyu-pochek-



While I wouldn't use "sweet" to describe my husband, he does have his moments. The day of the accident he mentioned how he stopped twice to let squirrels pass (on quiet streets, not impeding on traffic!) Sigh! Maybe that's good karma in rodent world, but not people world.
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SooMK
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« Reply #6 on: October 24, 2021, 01:56:05 PM »

My grandma always said bad things come in threes. So there's your three. Hope that's it. Sending best wishes!
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
UkrainianTracksuit
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« Reply #7 on: November 23, 2021, 11:24:59 AM »

This isn't about me so don't take it that I'm a selfish person. It can potentially come across this way.

My sister-in-law and I do not have a close relationship. It's kinda surface. She holds some animosity that I "took" her brother (not the only one though) so far away from the family, especially as his siblings have children that should know their uncle, and his parents are aging. Still, we exchange greetings on holidays, and sometimes have short text conversations. Then,I might not hear from her for weeks or even months at a time. She didn't reach out (another neither did I..so, guilty too) for 8 months this year until I got a random text for a holiday.

I'm not sure of the level of communication between her and my husband, but I know they talk.

All in all, she is a very tricky personality. It must run in the family...  ::)

Yesterday, out of the blue, she texted me.... and it was like early morning over there. She advised ME that her mammogram came back highly suspicious, went for a biopsy, and awaited follow-up. It was in the tone of "I thought that you should know that.." I know why she came to me...it's because it's a breast issue (women's health) so she wouldn't dare talk about that to her brother. So, I was handed that heavy bomb to be the intermediary to tell my husband. He took it okay-ish. He reasoned with himself that the biopsy would be clear and it was just precautionary. And we'd make the trek to church this weekend to light a candle for her. Eeerrrrr, yeah...okkaayyy.

Just a few hours ago, I got a text from her again that her results came back positive for a certain kind of cancer. Obviously feeling gutted for her! Never have I ever been in those shoes to get results like that. My stupid skin cancer experience doesn't even compare to the magnitude of this news.

Obviously, I headed to Dr. Google just to see types of treatment and success rates. Success looks good...if the treatment can be secured and done quickly. And not spread to the lymph nodes. Errrghh, yeah...

Like I said, my sister in law has a tricky personality, so I don't know when/how to offer words of support, because I could get technically get my head bitten off. I sent some words of support and didn't get a reply so I consider that a good day. My husband is at work so I need to dread telling him about this for a few more hours.

But, I know, with this news, my husband is going to be on the phone all night, and he's going to plan to get his ducks in a row and head off there when he can, because obviously he wouldn't expect his parents to do anything (because they are older), she's divorced, and has kids. Let's add this situation into the Autumn from Hell. And did I mention Russia is a COVID zoo right now?

The good news is that I got my last pay check no problem and I have a month left on this contract.  :P
« Last Edit: November 23, 2021, 11:28:19 AM by UkrainianTracksuit » Logged
kristina
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« Reply #8 on: November 23, 2021, 03:29:04 PM »

Dear UkrainianTracksuit,
I can well imagine that these frightening news must have been a terrible shock to your family and sister-in-law and especially, since the test-results came back positive. I don't know, how far "it" has developed yet and I very much hope for her that it is "still in the first phase", which gives her the best possible chance to survive.

When I had "my" cancer-episode I was fortunately still in the very first stages and luckily I am very sensitive and noticed very quickly that something was not quite right and so I went quickly to the doctor, had my operation quickly "done" as well and that gave me a chance to survive this traumatic experience with an operation first, which was followed by weekly (one session per each week) radiation-therapy  ...
I do hope that your sister-in-law is lucky as well and I send my best wishes from Kristina. Take care.  :grouphug;
« Last Edit: November 23, 2021, 03:30:25 PM by kristina » Logged

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 #9 on: November 23, 2021, 04:33:23 PM »

I guess all you can do, really, is to let your husband and his sister just get on with it.  I'll be interested to learn whether or not she wants him around.  Do you think he would be a good caregiver?  Will he be able to cope with the kids?

And yes, Russia is a covid zoo.  My husband has acquaintances over there, and they are feeling very anxious.  If your husband decides to travel there, I hope he will be very careful.  Your sister-in-law will be more susceptible to covid during her treatments, I'm guessing.

Good luck to all of you!  Good news that you got paid!  Yay!!!
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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 #10 on: November 24, 2021, 01:34:52 PM »

Thanks kristina and Juicy Moosey.

To be honest, I don't know how quickly the cancer was caught or what stage it is in. I don't think she knows yet either so we'll see. Crossing my fingers it was detected early and a reasonable plan of treatment can be put forward.

My husband came home sick from work yesterday (claims he felt coerced to eat "foreign food" from a co-worker and had to say yes) so he popped some dramamine as soon as he got into the door. When he was a little with it, I told him, but he didn't have the energy to get on the phone. Today is his birthday so I'm sure he's spoken with all of them and is up to date anyway.

So, I know why they call him and expect so much of him when things like this happen: he is the portal to money. He's going to be compelled to pay for treatment at a private facility for speedier and/or better care.

As for him as a caregiver, I'd have to pass. He's not awful at it, but it's not his personality either. I mean, he does what is expected (prepare meals, cleaning, errands, medication reminders/preparation), but he kinda lacks empathy. Case in point: I started to vomit after going to the dentist on Monday (their flushing waster tastes gnarly so I get an upset stomach). He just closed the door to the room he was in and kept talking on the phone. I have a million little anecdotes like this! So, I'm not sure how well he'd fare as a caregiver to someone receiving treatment for cancer.

For the kids, he'd probably do everything possible to ensure that they had some stability at home (especially with dad out of the picture), but I'm not sure how he'd manage it. Everyone is probably expecting him to return home, put on his militaryman hat, come up with a plan to keep the family managing okay. Especially, as everyone tells his parents, that it is "a shame" that their super duper wonderful awesome excellent manly man of a son is not there in their old age. And oh, how awful it would be for the parents to have to now care for their daughter, when they too need help.

To be honest, if he goes over there during the COVID zoo apocalypse, I'd be very worried for his own health first of all. I'd be worried about what would happen to his sister being more susceptible. And on top of it all, I'm kinda worried he'll be stuck over there for an extended period of time. I know it is a different scenario with borders now, but last year, a couple we knew went home to visit. Ended up being stuck there for 8 months.  We're not co-dependent, but I'm not sure how I'd manage.
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Simon Dog
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« Reply #11 on: November 24, 2021, 02:24:02 PM »

I have been accused (probably rightly) of being a lousy caregiver for the same reason.  If I were an MD I'd probably need to be in a specialty that deals with sedated or unconscious patients.

I am great at getting my wife what she needs - pharmacy pickup at 2AM; bedsheets; fix broken stuff; take blood pressure / pulse ox / temp, bring hot or cold towels, water, food, etc.  It my wife was on D I would insist on home treatment and I would take care of maintaining the machine.  My wife is great in the empathy department, but drew a line around the machine - "not touching that except to help you with a medical issue".

But... I am terrible at saying "you must be in terrible pain, it must be really awful" at the requisite 3 minute intervals and have a tendency to concentrate on what needs to be done (like "You seem to be in a lot of pain, should I call 911, take you to the ER, or should you call your MD?" rather than utter words showing I understand how badly things are.

On the other hand, I tend to want action over sympathy.  It my arm gets ripped off, I want someone with a tourniquet, not someone to say "that's going to leave a mark" or "looks like you need a hand".
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UkrainianTracksuit
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« Reply #12 on: December 13, 2021, 05:45:51 AM »

Even though it is a COVID zoo over there, we know a couple where the husband has headed home for whatever reason.  ??? The wife is a sensible Englishwoman so she is staying home.

My husband has decided that he will go based on the results of the sentinel node biopsy. Surgery is this week so we should know soon enough. Radiation will happen anyway so my husband is working on arranging housing closer to the cancer clinic for his sister whether he goes or not.

I am not getting myself more emotionally involved in the situation than need be. The government is warning people not to travel overseas because the spread of omicron will cause all sorts of travel amendments, delays, etc. Make your own bed and all that....
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