Catching up: Procedure #3, #4, and now Dialysis and Short-term Disability

on November 10, 2015 i had a third procedure, prepping my veins for dialysis. i am so tired of procedures. i’m tired of having my left arm carved up…this time to place a small (millimeter-sized) balloon in my vein, add a little bit of air, and my vein becomes larger.

what really bothers me is i’m just feeling comfortable with my new position at work, and every time they carve me up – i have to take a week off for recovery. not only does this put me behind in my work, but i feel like i’ve left the people i support down. they start trusting me and giving me more responsibilities, and there i go again, having another procedure. none of them know what’s really going on, so i feel like they think i’m just a “sickie” or lazy person, and that really bothers me.

i only have eight more years until i can retire – after working for the company for 22 years, i don’t want anything to get in the way of a clean retirement. plus, i’m only 52. i’m not ready to feel so sick.

(typed that earlier – this is the current posting)

after the November 10th procedure, i had one more procedure in December to clean up the same area. after multiple (half a dozen?) scans to find out if my flow had improved in my new artery (fistula), i was given the go ahead for dialysis on January 8, 2016.

meanwhile, my medical condition was drastically failing. i had no idea how sick i was becoming. the new job my employer gave me was taken away because out of 1,047 emails i sent out, ONE email didn’t have text in the subject line. i supported a group of twelve people who had no problem with my skills, yet two people out of the dozen said my skills weren’t up to par. while i was out for my procedures one of them walked up to me and said, “do you feel better now” upon my return to work. i replied, “i never felt bad to begin with”. she repeated the question, “but you feel better now”? i repeated my reply. after that day, i didn’t have the new position, so i asked HR for a sit down why – for i did the job WELL, and i felt they were replacing me for a younger person due to my medical condition and age. i even consulted a handful of attorneys. all said i had a fantastic case. this stress, along with my kidneys now working at 8%, were pulling me down in this vast gloom of depression and sickness – yet i wasn’t ready to quit working or go on disability for dialysis! i was going to fight this illness until i had no other choice.

then it happened – i lost all taste. it was like i had a mouth full of blood at all times. that metallic yucky gross taste. NOTHING would help it. i could eat tortilla chips and salsa (all bad for me), but as soon as i swallowed, i would taste that horrible taste again. within a week, this taste was so horrible it ruined the taste of chips and salsa! all i would taste is the metallic yuck. i stopped eating. i wasn’t nauseous or throwing up, just wouldn’t eat. that was when i realized, i couldn’t work any more. i was weak, sick, feeling horrible, depressed…i told work i was too sick to work any longer on January 25, 2016. it happened that quickly.

i was so sick and so worried they would fire me from the BS job issue mentioned above, i fought them on taking “sick time” for my illness. i had over a month saved up in vacation time, and i told them i wanted to take time off using my vacation time so they wouldn’t be able to write me up or discipline me for being out due to my illness. my HR rep continued to call me at home and said she couldn’t “in good faith” let me charge this to vacation time since our company had great medical benefits and unlimited sick time just for reasons like this. i was so confused from all the toxins in my body, i fought her on it and told her i was too sick to even talk to her. all i could do was lay in bed, watch tv like a blob on the couch, waiting for dialysis to start and hope the taste in my mouth would go away soon.

i visited the dialysis center on January 27, 2016. they filled my already confused mind with nutrition, bills, social worker, staff, rules – everything you can think of – prior to my first treatment. that first treatment they inserted the smallest needle size (16 gauge) into my newly created and approved fistula, and cranked the machine to a medium rotation (300) because i was so ill. within 20 minutes my blood pressure fell and i was hearing ringing in my ears. they were right on top of it and moved the draw on the machine to a slower draw (250). i felt much better after those first two hours on the machine. the taste was still in my mouth, but they told me it would take many visits for it to go away.

the diet with dialysis is really different. i have to eat so much more protein, plus i have to limit my liquid intake. i am only allowed 55 ounces of liquid per day. FIFTY FIVE OUNCES! previously i could drink that in one setting! because my kidneys still work and i urinate often during the day, they say i can handle more, but i should get used to 55 ounces because when they fail completely, that will be my daily intake goal. i pray i get a donor before that happens!

do you want to know how much CRAP they pull from me on an average visit? every day you walk in and weigh, then you’re on the machine for 3 hours, then you weigh again. it’s all in kilograms – but if you push a button on the scale you can get the weight in pounds. one day i lost 5.5 pounds in TOXINS and CRAP from the cleaning of my blood. since dialysis has begun, i’ve lost almost 15 pounds. they say that’s too much, but i’m feeling better. i am only lightheaded at times when they bump up the machine to draw more junk out of me in the same three hour time period.

so, here’s the kicker – i had no idea how sick i was. when you’re overweight with failing kidneys – there is NO IDEA to know how much toxins and crap you are carrying around – day after day – week after week – YEAR after YEAR. until you’re on that machine and it cleans you out and you fell like a million dollars and you go walk 5 miles with your dog and you smile at the sky and you make angels in the green grass. only to find out you overdid it and are exhausted the next 24 hours.

there is a happy medium and i will find it soon. i am so thankful to be alive and able to be given this medical blessing of dialysis. i will continue to lose weight and soon i will be on the eligible transplant list for a kidney. someone out there has an extra kidney that will be mine one day.

now to get well enough to return to work. i hope to return mid-March and give em hell.

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Not Feeling Well Today, Day 3

felt like typing today.

so i think i’m at the point where my body is shutting down, aka dialysis time. i am not hungry. i don’t want to eat at all, and only do to keep my husband happy. i feel so full for my tummy is protruding from my kidneys being so large – filled with cysts and all. i’m starting to be nauseous…not all the time, but noticeably. i haven’t even told my husband about it yet. i’m drinking lots of tea, black in the morning and green in the evening. the mint tea is supposed to help my tummy, as it always has..but so far, it’s not working.

i see Dr. Lin, vascular surgeon, next Friday. i find out if my new fistula is healing well enough to do a second surgery to bring my veins closer to my skin. round two prior to dialysis.

my company is watching me closely, saying they think i should go out on disability now. but i’m not ready yet. i’m keeping my people happy, getting my work finished on time, doing well enough to get a bonus last week…but it’s the little things that i need to watch. my confusion due to being tired/fatigued. they are really on me to make sure i get in my time and take my breaks/lunches. it’s all so exhausting.

i read the Dialysis FB page and see how good i have it compared to other people. they post pictures while on dialysis – in their chair. they show their huge, bulging veins and how ugly they become after years of dialysis. they remind me every day that it will get worse before it gets better. and they also remind me to be happy i’m alive and to enjoy life to its fullest. they scare the heck out of me and also make me feel so much better.

tonight Billy Joel is playing at AT&T Park. i wanted to go so bad. i’ve never seen him and he’s a legend. it’s his first time playing in San Francisco – EVER. tickets were only $50, but we are living hand to fist right now with this crazy apartment, our bills & just life in San Francisco.

i wrote the other day on FB that i can’t believe how i live in San Francisco but don’t enjoy it any longer. there are so many things to do for free here in the city, but i’m too tired to think about leaving the house to actually do them! it’s all i can do to get on BART to make it to work twice a week. on the other days i stay in my sweats, and barely walk the dog 5,000 steps. my body is shutting down. i live for my paycheck, but when i go out on DL, what’s going to happen then? i see things changing drastically soon.

Best Friends Forever

since my diagnosis, i’ve come to realize there are people who say they love you and will always be in your life as a true friend – and then there are people that pack up and leave you hanging when the chips get down.

i had a friend i actually thought was my BFF. we called each other BFFs while posting on Facebook. we called each other every other month or so. we saw each other at least once every other year. she moved two time zones away, but that never ended our friendship – for almost three decades! then i was diagnosed with Polycystic Kidney Disease. i think she was the third person i told, after my husband and my family. she told me she was horribly sorry, would pray for me and loved me. told me she supported me in all things, and wanted to be updated and told what was going on as things progressed. i’ll never forget that phone call, because it was the second to last time i’d hear her voice, but probably the last time i’d ever hear the love and true care in her voice.

we all go through trials and tribulations in life. she has her own: her husband’s health turned bad, her son was deployed a second time to the Middle East, and she complained to me that her job was not going well. the only contact she gave me was via Facebook – i’d post something and she’d reply with a thumbs up or a “we’re praying for you.”

one day i told her, i want to TALK to you. it had been months and i wanted to discuss her job issues and her husband’s health. we made a time to chat via phone, and she never showed up. said she was too busy. i tried a second time to connect with her. this time she answered the phone with, “hi, i don’t have much time to chat but let me tell you about my horrible job….”. now this has always been my BFF. one of the things i’ve always accepted with her personality and friendship is she’s a chatty cathy. when i first met her i said to her, “don’t you ever shut up?” and she called me a b*tch for saying such a thing…and i liked a woman like that. who was honest and straightforward and we laughed like crazy and never stopped laughing over the decades.

so after i listened to her say her job wasn’t really all that bad, she was just having a bad run for a while, and after i listened to her husband’s health issues and how things were turning better – it must’ve been about 20 minutes of her talking – she finally said, “so how’s things going?” and i said a handful of words, “i’m doing okay. i guess it could be a lot worse…” to which she interrupted, “yeah, i wanted to talk to you about why i cannot test for your kidney match. i am just too busy and i have to work, you know i’m the only one that pays the bills around here. if i was your match, there’s no way i could take time off to give it to you as i’m just not able to be away from work.” i was stunned. STUNNED.

i wish i said what i felt, i really do. i’ve always been honest with this woman and i truly wish i told her how ugly that sounded to my ears over the phone. this woman who i thought cared about me, for over three decades, and i really see now how much she cared. she cared when it was convenient. she cared when it was easy. and she cared when it didn’t cost her anything. what i did end up saying was, “no one ever asked you to test.” and she replied, “oh i know, but i just want to tell you why i’m not.” and then she went on to continue the conversation. but that was the end of the truth in our friendship.

i was so shocked i was crying on the phone, and i couldn’t have said anything but ugly crap because i was hurting so much, so i let her rant and go on. she sounded extremely uncomfortable and overtalking due to that. so we ended the call shortly after and i haven’t spoke to her since.

very soon after that call she started posting on FB that she was selling products that made you lose weight, become healthy, etc. she turned her FB page into posts about “join my team” and “you can’t win unless you try” and other bumper sticker BS statements that were induced to make you buy the product, but in the long run did nothing for your body. i just ignored the posts for weeks, never replying. this woman has always sold MaryKay, so i just figured it was another way of making cash for her. more power to her! but as time went on, things soured for me. i thought about it for a long time. every post about her latest body wrap find or greens drinks made me madder and madder. i thought about it for so long that i actually talked about it with my husband:

  • if she’d only spend a fraction of the time she spent on that new BS junk, on asking me how i’m doing, on asking me how i’m feeling, on asking me how she can help me. that’s why it hurt so much.
  • if she’d reply to my posts on FB with more than a thumbs up, or a “we’re praying for you” or something, ANYTHING, more than ten words. that’s why it hurt so much.
  • if she’d realize that this CRAP she’s selling is just a short term jolt, not a fix at all. i am someone who has failing kidneys, and she’s screaming all over my FB news feed this “just send me your money” or “be on my team” and everything will be roses BS. can she just put herself in my shoes for one second? that’s why it hurt so much.

my husband recommended i unfriend her if it bothered me that much. i’d almost rather cut off my arm than unfriend her! we’ve been through this social media thing together! it’s how we communicate with each other. it is our friendship, now. then i realized, that says an awful lot. think about that…a friend you’ve had for over 30 years, and you really know her as well as any other person she types to on FB. that’s what i shared with this woman now. it really hurt. hurt bad.

i discussed this with my kidney & dialysis support group on FB. it’s such a great place! you can ask questions about our disease, when you just want a hug, a dozen come immediately. sure it’s all through cyberspace, but the stories people share – they mean the world to read someone else is going through what you go through. you need to have these people to help remind you YOU CAN GET THROUGH THE DAY! so i posted my BFF issue with the group, and i got the best responses:

  • she never was a real friend;
  • she’s afraid and doesn’t know how to tell you;
  • there are some people that just can’t deal with this type of disease, or anything that shocking and they mysteriously fade away; and
  • pray for her.

i read other people’s stories, and was so thankful i posted the question. i got really good advice and support, and i thought about it for a while. i prayed on it a bit too. and i decided i had to tell her how hurt i was. instead it was another one of her BUY THIS PRODUCT postings that sent me over the edge. i had just heard i’d need a second surgery and she was hawking cream to hide scars and stretch marks. so i Googled the product she was selling and the first ten stories came back about the company and it’s products being all scams.

i read three different articles about how this multi-level marketing company’s products didn’t work, and it was mostly geared towards the initial investor to continue investing in the product for their own needs, rather than continue to find new investors and sell through them. just like with MaryKay, she had a whole closet of product she never sold, and ended up using on herself or giving away to others as gifts. i saw the same thing happening to her with this product. and – to be honest – i also felt “you have money for this crap, but you tell me you can’t test as a donor because you’re worried about money?”

so i approached my friend, nicely, and told her privately via Instant Messenger what i found online about her new company and it’s products. i told her i wanted to send her the link about how financially the company did not work for investors. there was a spreadsheet that broke it down for her to see how in the long run it was a money scam. she wrote back, “i’ve done my homework, i don’t need to see negative information. thank you. love you.” so i let it go.

a couple days later, and probably ten new product posts on my FB news feed, i came right out and asked her to remove me from her product postings (via IM again, private). i told her i didn’t want to see it on my feed any longer. i wouldn’t be buying, and it seemed to me all i was seeing were these posts that screamed BS to me. i likened it to someone begging for game help, although i didn’t say that to her. as a reply she stated, “you have to go into Instagram and remove me. i cannot filter using Instagram and that’s how i post.” that sentence alone speaks volumes to me. no ‘sorry’, no ‘how are you’, not even a ‘i’ll look into it’, but she threw it back on me to fix. so i went into Instagram and removed her as my friend. i thought it wouldn’t matter since i follow her on FB much more.

within an hour or two i got another post on my FB feed which says she’s “looking for TWO (2), only two” – P U H L E Z E – to try her new facial masks. so i IM her again and say, “i can still see your selling posts” and she replied, “you can unfollow me on FB with unfriending me. i can not control how Instagram posts to your feed. you have to change the settings on your end.” and she couldn’t have shocked me more by hitting me with a frying pan in the face.

so i replied honestly, “do you even see how uncool this is on OTHER people’s feeds. it’s like all you care about is the dollar signs. yahoo you’re making cash, and i’m happy for you, but really…decades of friendship and oh well. that’s what i feel.” no reply. so i blocked her on Instagram.

the next day i saw a picture of her over made-up face, with a huge smile and exaggerated eyes with the words “commissions just posted, ask me how you can make money too”, and i’d had enough. i was just going to tell her i was going to block her from Facebook because i couldn’t take it any more, and i saw her Instagram account was linked to Facebook. so even thought i unfriended her and blocked her on Instagram, it wouldn’t matter because her accounts were linked via Facebook and her postings would go both places! it wasn’t anything i had to do, it was her all along! she had to unlink her accounts, or create a listing in FB with a filter. so i thought i found a work around, and told her this. i was excited, like i thought i found gold or something. i sent her an IM about this issue and as a reply, in her typical fashion, she ignored me. but the worst is i haven’t seen anything from her since. i can only guess she has stopped posting to me via FB, for i can still see we are friends. but she has not posted anything that i can see since my final IM comment.

so the morale of the story is, some people can call you their friend and mean it…and some people really think they are your friends. but when the chips are down and life comes to a halt around you…it’s the true people that care that turn out to be your friends. it’s the strangers who don’t even know you, but test to be your donor match. it’s the friends who send you photos in the morning via your cell phone just so you start the day with a smile. it’s the friends that want to help, ask to help, and care about what BS you’re going through – instead of trying to pile more BS onto you. and you may not know who those friends are, until that catastrophe happens, and if you’re reading this…i hope it never happens to you. for it’s very painful and eye-opening. but in the long run, i’m glad i know.

and here’s the funny thing about this whole saga: i pray for her and her family. i still love her and her husband, and her dog & cat, and her town, and her neighbors…i would’ve given her an organ of mine in a heartbeat. i would’ve moved to her home and took care of her, i loved this woman that much. if it turned out she had PCKD, i would’ve been there pronto. she was my best friend. i don’t have many friends. but i trusted her friendship. and that’s a hole i’m missing now, on top of this disease.

Potential Donors

i won’t name the folks that have tried to give me their organs. i find it extremely personal and private. but i must share the generosity of those that offer their extra kidney. what moves me is they’ve offered this gift, just to share the gift of life.

Donor 1 – 2015
this man i would call a friend. i would call him an old friend. but i wouldn’t put him in a good friend category. he lives multiple states and a couple of time zones…i’ve only seen him twice in a decade. but when he heard i needed a kidney he volunteered to donate his. he went through multiple tests, heard all the “where is your payment for this test” and the tired answer, “but her insurance is paying for it.” try and get that approved from a paper pusher named Shaqueesha at Quest Diagnostics. it doesn’t work and it can get ugly. this man was a potential match, even was approved for further testing. but giving blood at Quest he ran into roadblock after roadblock after roadblock. he is healthy and from what he told me, was a go on all accounts…then all of a sudden my transplant coordinator told him he wasn’t going to be a match. they did tell him he could donate his kidney as part of a transplant chain (his kidney would go to someone else that was waiting, just like me, and i would get a kidney from whomever matched my needs)…but he nixed that idea. in a phone call to me he said, “why would i want to go through all this BS to give a stranger my kidney, i want YOU to have MY kidney.” how do you explain to someone who is giving enough to embark on this generous journey…”PLEASE, do it anyway?” i can’t. i don’t know what to say about that comment. so i just said, “uh, huh. okay.” in a lot of ways i felt at peace that he wasn’t a match. i felt guilty that he had to jump through hoops from such a far away state from me. he has his own issues and his own needs…although i would have loved for his extra organ to be mine, i totally cannot thank him enough for all the effort he gave me when he didn’t have to do a damn thing. seriously, his comment in my phone will forever ring truth, “my question is…why aren’t more people doing this?” amen.

Donor 2 – 2015
my second donor did not pass initial screening, as he has very high blood pressure. he said he will change his ways and make it a priority to change his BP to be able to donate.

Donor 3 – 2015
as with Donor 1, this man didn’t have to even reply to my request for a donor via Facebook. he has known me since the 90s, about as long as Donor 1. he also lives a couple of time zones away, and wanted to give me his kidney so bad he flew here to test. he was grilled and badgered by the transplant team – with such questions like “have you ever been convicted of a felony?” and eight different ways to ask “is she paying for you to give her your kidney?” the one he shared with me that gets my goat is “why would you do this for her? she lives multiples states away, you only keep up with her via email, yet you’d give her your organ?” are these people on my side??? the outcome of Donor 2 is still undetermined.

My Memory

i figured this would be a great place to start…to have my own typed details to remember. things are changing so rapidly, it’s necessary. i ask Jason all the time, “when did that happen? did that happen? did i dream that?” this way i can have it down, like i remembered.

November 2014
blood tests results came to my house by mistake, an error i am very thankful happened. i read the levels in bold red, showing they were elevated…Googled what that meant, and realized i had a kidney issue that needed immediate attention. i found a nephrologist in my health network, and was told how sick i actually was. Dr. Saxton couldn’t believe i had passed through other doctors, other surgeries, other medical issues and this was not red flagged sooner. my kidneys were only functioning at 14%. i was never told by my primary care physician how sick i was. she was more worried about selling beauty aides and face lifts than actually dealing with health. i liked my PCP because she always gave me xanax when i needed it. my previous doctor told me to breath to reduce stress, so i thought i had the best doctor ever. come to find out i had the laziest doctor ever. in 2012 i did a complete ultrasound on my kidneys for her and she said, “yeah, everything looks fine.” Dr. Saxton found her notes and the pictures in my file (one big computer share). at that moment i cancelled my relationship with my old PCP and made Dr. Saxton my new doctor. she is semi-retired, an older woman nearing 70. she’s sharp as a tack and only works three days a week. she recommended i become a patient of Dr. Goldberg, as he was an excellent nephrologist specializing in dialysis needs. she also wrote me a script for xanax. hahaha

February 2015
after Jason and i spent a couple weeks in Florida (Disneyworld and Key West), i came back to many blood draws to find how bad my kidneys were. things never got better, they just slowly slid south. my kidneys were functioning around 12%, and the magic number was 10% before i needed dialysis. i was told to expect to be hooked up to a machine three times a week for about four hours. doing the math, that’s 12 hours a week…and extremely daunting/depressing, and downright scary. every month i played with my food and tried to eat what i wanted, yet not too much sodium or protein…don’t forget to limit the potassium and phosphorus. ridiculously hard to do when you love food.

July 2015
it’s time to get a fistula! my blood work has shown my kidneys continue to hover around 10%. no matter what Dr. Goldberg has tried (extra water, water all the time, tons of water, did you drink your water?), with my eating habits…the kidneys are still at 10%. i have come to realize i can eat anything, just very little of it. with all the water i drink, i’m not hungry – or is it with the renal failure, i’m not hungry? well, let me be clear – i can eat. i can put down three Jack in the Box regular tacos, and be happy. but i won’t eat anything else the rest of the day. since starting this journey, i’ve lost 30 pounds, but i still am bloated from the disease. my pants fall off my hips, my panties are too big, but i’m still too heavy for a transplant. so, it looks like dialysis is a reality.

unfortunately, all the vascular surgeons associated with California Pacific Medical Center (CPMC), as Dr. Saxton & Dr. Goldberg are, do not accept my insurance for fistula operations. so i decided to search their sister hospital’s surgeons, Mills-Peninsula in Burlingame. since i live close, why not? i found Dr. Stephanie Linn, a warm, gorgeous, awesome surgeon. she spoke to me for over 30 minutes describing the surgery and why i would need it. i left that office feeling i was in the best hands ever, and i trusted this woman to take care of me.

August 3, 2015
the fistula is in my left arm. as Billy Joel played “Just the Way You Are” (my request) in the operating room, Dr. Linn cut an incision the size of 1-1/2 inches and merged two veins together to create a new artery for my dialysis needs. she told me she had to make a second incision on the inside of my wrist (about an inch) because she needed to move some veins around.

two weeks after surgery i saw Dr. Linn for follow up. she told me my incision was healing well, but would need to do a second surgery to move the veins closer to my skin. she said the second surgery would make the incision about 5 or 6 inches longer, the actual length of my arm, and it would take 2-4 weeks to heal before dialysis would be possible. she asked for me to return in a month for an ultrasound to see how the vein was growing in size.

Dr. Goldberg phoned me the next day, saying he read Dr. Linn’s comments and wanted to know if she understood that dialysis was needed pretty soon, and we didn’t have lots of time to wait for a second surgery. he told me my latest blood work showed my creatine level was extremely elevated and needed attention. he said that was the one thing that had always worked well in my favor, low creatine, but this blood work worried him about waiting for dialysis. he then got another call and had to go, but said he was looking forward to talking to me about it at our next office visit, next week.

since all this has happened, i have started drinking more tea (lowers my creatine), and i took a couple days off to try and just relax. my blood pressure is good, but i need to wrap my head around this stuff, and i’m actually hiding in my apartment watching tv. hiding from it all.