Woohoo - no more pneumonia (well almost....) but other terrible things, like a car accident...

Hello all!  I felt like it's been forever since I last posted, but it wasn't as bad as I thought once I checked.  I'm writing this just to keep track of everything, and so I can remember everything...

I had another chest x-ray and breathing test yesterday, and it looks like my pneumonia is mostly all gone now.  I feel MUCH better than I did 2 months ago, but I've literally done nothing physically since being diagnosed back in June.  No yoga, no mowing the lawn....I barely walked up and down the stairs for a month.  But all of that is better now (I'm still not mowing....no glutton for punishment here!) but also no yoga (I hope to remedy that next week when Izzy's at camp).

I also had an esophagram last week to try to get to the bottom of why I continue to get pneumonia.  It was an uncomfortable procedure (barium drink is gross.....) but it didn't reveal any issues with my anatomy that could be contributing to the frequency of my pneumonia.  Not a total loss I guess...at least we've ruled that out.  It almost feels like now we're just waiting for the next time I get it.

Also, the ever-persistent cough is gone for now.  After doing some research, and talking to a friend on Instagram who also has FSGS, I think I have something called laryngeal sensory neuropathy.  Essentially, as I understand it, the nerves in my throat have become "irritated" from all of the coughing I do.  So now, when I cough a lot, it triggers this neuropathy, and it can last anywhere from 3-6 weeks for me.   There are medications available to treat the neuropathy, and there's also botox injections to the affected nerves (worst case scenario).  I have an appointment with the University of Minnesota's Cough Clinic next week (I was referred there by my ENT), so I'm SUPER hopeful that this can be addressed there and we can develop a long-term plan for this intermittent, but all-consuming problem.

My sinuses are pretty good right now considering it's the beginning of ragweed season.  My bronchiectasis has been very manageable for the last several days, so today I'll say that I feel good :)  I think that catches up on all of the medical things (except for the sharp pain in my back, but I'll get to that in a minute).

So, the week before last, Izzy and I had planned a road trip to Indiana to visit my parents and my Grandma and some friends.  Joacim was headed to Canada for a fishing trip, and we didn't have any appointments in a 6-day stretch, so we figured "why not?".  We headed out Tuesday, late morning.  We were less than an hour into our drive, just on the other side of the Twin Cities but not yet in Wisconsin, and Izzy was having problems getting her new bluetooth headphones to connect to my iPad because she wanted to watch a movie.  I knew this was something I couldn't do while driving, so I hopped off on the Radio Drive exit in Woodbury, pulled over to the side where there was plenty of space, and fixed the pairing issue.  We got all settled again, re-entered that exit ramp, and got in the lane to go straight across to get back onto the interstate.  The light had just turned yellow but I was already committed and then WHAM!  A car hit us on the passenger side.



First of all, we're ok.  Everyone involved.  Izzy was shaken up (rightfully) but once she realized she was ok, she was a champ considering the scariness of the situation.  My first thoughts after the accident were (in this order):

1. Shit.  Did I run a red light?
2. Shit shit..Joacim's going to kill me because he's not going to be able to go on his fishing trip (he didn't go one other year because I had pneumonia)
3. Shit Shit SHIIIIIIIT.  I ruined Joacim's car!!!!

We were driving the Volvo.  THANKFULLY....that thing is built like a tank, and the impact was not as jarring as I had always imagined.  That being said, a week later, I'm feeling some of the effects from the wreck. The back pain was substantially worse after it.  I got everything checked out at Urgent Care the next day, and I started going to the chiropractor and getting massages this week.

But it's totaled. Gone.  Kaput.  Bye Bye.  Sayonara.....

Our car (and me taking a picture of it)

her car

I remember crossing the intersection and hearing a horn honk, so turned my head to the right and all I saw was a car smashing into us.  That car was going at a decent speed, so we continued to move forward and to the left, across the intersection, after she hit us.  The entire time I'm just focusing on trying to keep our car relatively straight because there's a fence on the left-side that I was trying to avoid because I didn't want to be trapped in the car.    We didn't see her coming, didn't even have a chance to apply the brake or anything.  She hit the door of the passenger side, and then wrapped around to the passenger seat.  Side airbags deployed on our car, and the steering wheel bags deployed on hers.

When we came to a stop, I got out of the car, pried Izzy's door open to get her out and then checked on the woman in the other car.  She said she was okay....a little dazed but ok.  And then all of a sudden there was another person there (who ended up being a witness to it all) and then the sheriff.  Izzy and I were whisked away back to the car to answer some questions by the community service officers.  Am ambulance and a fire truck (I think) showed up to make sure we were all okay as well.  I called Joacim to tell him what happened, and I'm so glad he was still at home.  While he drove to pick us up, the tow truck showed up, we got our personal belongings like my purse and Izzy's backpack and our cooler, and the community offers dropped us off at the Cabela's across the street to wait.  

The car was stuffed with 9 boxes of dialysate, the machine itself, the compression vest, a large suitcase for supplies, and two small ones for Izzy and my stuff.  It all had to stay in the car while being towed, which meant Joacim had to pick us up, and THEN drive us to the towing place to get out stuff.  I had to file the insurance claim while waiting at Cabela's (while Izzy and I sat outside and ate all of our road trip candy :), and then we had to deal with permission to remove our stuff and permission to move the vehicle and on and on and on.

Gawd...I'm amazed at what we got done.  In 2 1/2 hours I had a wreck, filed an insurance claim, got all of our stuff out of the car in Stillwater, drove an hour home and unpacked ourselves and packed Joacim, and got him going on his trip.  We left all of the dialysate in the car in the tow yard because the Jeep isn't big enough to put everything into.  Not terribly important because I can easily get more, but it's annoying that I have to.

I've done all of the insurance interviews, and we already got the cheque from State Farm for the Volvo, so this week has been spent car hunting, which isn't as fun when being forced into it.  We've been looking at cars for awhile because we knew we'd have to get one to replace the Volvo in a year or two, but we weren't planning on doing it this summer.  It's so scary now that I'm not working, and I'm so unsure of everything.  

All the sad, all the worries

As many know from my social media posts, this last week has been particularly difficult.  Last Wednesday, we had to say goodbye to my faithful companion of 12 years....our dog Murphy.  He was my best bud, my 2nd longest roommate, the first dog that we raised as a family.  He was there through the rough parts of FSGS (prednisone, moonface, crushing lack of self-esteem), when I was pregnant with Izzy and happy about everything....he was right there in our bedroom the night we brought Izzy home from the hospital (although initially probably not thrilled about it).  He was there waiting for me to come home from Mayo, and has been my constant dialysis companion since I started doing it at home back in November.

Man, the number of hours that we spent playing with him as a pup because he was so high-energy.....I mean, there'll never be another dog that will get that time and attention from us.  In his older years he became such a distinguished gentleman, with his gray beard and soulful eyes.  I could talk to him....tell him everything that was on my mind, and the only thing he requested in return was constant affection.  I couldn't imagine how difficult it has been to say goodbye to him.....

I've been struggling a lot, emotionally, and this last week feels like it tipped me over the edge.  The first question my nephrologist asked me on Monday was, "Are you down?".  I guess it even shows in my physical appearance.  The waterworks flew for a bit, and she was kind and listened.  She suggested I start back up on Zoloft, but I'm hesitant because I felt nothing.  I stopped taking it last November, in part because I new my time with Murphy was coming to an end, and I wanted to cry about it.  I wanted to feel all the feels.  I wanted to honor him as he had been such a sweet companion to me.

But I don't want to start back up on the Zoloft....not yet at least.  I'm going to try to set aside time every day, even if it's just 5 minutes right now, to meditate.  I'm also going to see what I can do to start getting back into yoga.  I've done it the past 2 days, and I'll admit I was surprised at how sore I am, but I need to push through it.  I think, in the long run, it's going to make me feel so much better, both mentally and physically.  My body doesn't have much range of motion anymore because of all of the sitting/laying I've done over the last 2 years.  I'd love to just jump into a class at Lifetime, but I swear I think I'd either pull every muscle in my body or have a heart attack, so I figure I'm going to baby-step back into it.  I have a membership at yogadownload.com, and they have a TON of classes to fit my needs as I'm building up my strength again.  I do, however, look forward to when I feel strong enough to go back to a hot yoga class.  Those classes are so damn "cleansing" for my brain, and I push myself so much harder in a class setting than I ever will here at home.  And I need any excuse to get the hell out of this house.

I'm going batshit stir crazy in this house.  I'm here all the f-ing time.  I look for useless reasons to leave all the time (except this last week....I think I needed to spend as much time at home as I could with our other pup, Rosie).  February, in general, is a difficult month to get through....it's just so cold here, and the cold starts to seep in everywhere.  I'm freezing inside all the time, so I find myself moving less and less, just so I can be in front of a heater/fireplace or on a heating pad....anything to stay warm except actually moving.  It's just too cold to be outside for long, so we're all stuck here a lot more than we'd like

It feels like dialysis takes up so much of my day....it's really wrecking any sense of control that I have over my life.  I am wanting to switch to nocturnal hemo at home.  It would still be 5 days a week, but it would be a 6-8 hour run overnight.  Maybe that's what I loved about PD....it was overnight and didn't seem intrusive at all.  I'm worried about keeping the needles secure and not making an unholy mess, but lots of other people do it, so I figure I can too.  But I can't make any progress on this until my fistula is fully healed, which I'll find out about on Feb 28th when I return for an ultrasound.  Then I can establish new buttonholes on my forearm again, which will be much easier to secure.  It's healing decently though...

Many people have asked about my blood pressures.  Well, I'm sad/angry to report that they're truly awful.  Just as bad as before.  I have no idea why the nephrectomy didn't do anything to affect them, and I now think I'll forever feel like a ticking time bomb.  I'm back on nearly all the meds, except the one that caused excessive hair growth, but it won't be too far behind at this rate.  Fuck, it's scary with these blood pressures....I just wish I knew there was something else to try, but there just isn't.

On a lighter note, I'm taking a trip, leaving tomorrow.  Nephcure, which is the organization dedicated to finding a cure for nephrotic syndrome, MCD and FSGS,  is hosting a leadership conference in Dallas, Texas this weekend.  I have been completely shying away from any opportunity like this because I just didn't feel like I was in the right mental frame of mind to do anything positive.  I'm not sure if I'm there yet, but I'm hoping this weekend will be the kick in the pants I need to reengage in my life.  I'm nervous to travel, although I have no idea why.  I have to get up at an ungodly hour tomorrow morning to fit dialysis in before I fly out. This will allow me to take this trip without having to worry about dialyzing while there, which is a HUGE relief.  Of course, I'll get off the plane on Sunday, come home and have to dialyze again, but at least it'll be at home, and I don't have to stress about that stuff.  Wish me luck!

Another surgery this Friday

I met with the vascular surgeon yesterday and things are moving quickly.  I've got a revision surgery scheduled for this Friday morning.  The plan is still the same.  I'm creating 2 new buttonholes because the angles I had the needles in before seemed to be causing a lot of machine alarms during dialysis, so I just decided to create new ones all around.  I did it last night and my arterial numbers were a lot better.  We also agreed to run at a blood flow rate of 400ml/min, instead of my prescribed 450ml/min, and that makes a difference.

I'm overall feeling better, but the incision used for the removal of my kidneys is so sore.  The random vomiting isn't helping (happened again last night as I was standing in the kitchen talking to Joacim about dinner).  I started getting nauseous today which sucks, but "yay"...at least some warning to take some medicine to prevent it.  I have no idea where it's coming from or why.  I'm not eating or drinking much.  My blood pressure was really high yesterday, so I added a second dose of the one BP med I had started.  I'm just keeping my fingers crossed that it eventually works.

It annoys me when people asked if the surgery worked, and I tell them I'm not sure because my blood pressure is high, and they respond as though I said "no, it didn't work".  Ugh, drives me fucking nuts. I didn't say it didn't work.   I said that my blood pressure is higher than it was in the hospital.  Did it work?  I don't have a clue.  No one does.  But I'm not going to throw in the towel over a few high readings.  If I've learned anything through all of this crap I deal with, it's patience.  And I don't understand why or how, but I know that sometimes these things just settle out over time.  It makes no sense to me that you take a pill and don't see immediate response, but experienced it more times than I can count.  So I'm just not going to freak the hell out about anything right now.  I had a major surgery, I'm still in pain, and time will tell.

This brings ups something else that I feel like I need to get sometime off my chest.  At this time, I'm not looking in to pursuing another transplant.  I'm not listed.  I don't think about it.  But I always feel like I need to defend this decision.

There are other people with FSGS that have had it recur, only to go on to get one or two other transplants.  Honestly, when I read their stories, I just wonder "Why in the hell did they do it?"  Some of these people didn't have it recur for a few years....some people had the transplant when they were younger, had FSGS recur, went back on dialysis and now are adults and want to try again...some even think that maybe everything wasn't done in order to prevent a recurrence in their case.  Whatever the reason, the one thing they all have in common is some hope that things will be different.  And maybe that's where I'm different...I mean, I don't really have that hope anymore.  I'm not trying to be all melodramatic or anything, I just don't.

I'm confident that my team and I did everything possible to prevent recurrence of my disease.  When I look back on those days, there isn't one single thing that I'd change...other than the outcome, of course :)  I mean, I did Rituximab, and then switched to hemo from PD, and then plasmapheresis before transplant, and then plasmapheresis after transplant, and more Ritximab, and IVIG.....and just every single thing that I put my body and my mind and my family through, and yet this is my reality now.

I don't know if that helps, but maybe someone will get it and not secretly wonder "for me" whether or not I'm making the right decision.  You have no idea how you'll handle it unless it happens to you.

There are just so many things....

Whew.....shit is DIFFICULT right now.  Every time I think I'm on an upswing in terms of my health, something happens that crashes it all back to my current hellish reality.

It's 5:07am right now (and on a 2-hr late start for Izzy, no less) and anyone that has met me knows that I'm not a morning person, yet for the last several weeks (maybe even months) I wake up around 4-5 am....sometimes I'm able to go back to sleep, but sometimes not (which is what's happening today).  I've been sleeping with the windows open and I wanted to blame it on the little birdies that wake up around 4:430am, but that doesn't seem fair.  I actually woke up at around 4:15am because of coughing.  I tried to go back to sleep, but my lungs are wheezing so much now that it's impossible.  Physically, it's labored breathing.  It takes work to inhale to get enough oxygen.  Mentally, it's freaking me the hell out because the wheezing and crackling is not getting any better. If anything, it's worse that it's ever been.

Here I am at urgent care Tuesday getting a nebulizer treatment

What is happening to me happens to so many other people (not the coughing and wheezing and lack of sleep).  I am stuck in a vicious cycle of seeing multiple doctors, none of whom are communicating to each other.  There is no one managing my overall care and seeing me as a person.  Here are the number of doctor appointments/trips to Urgent Care/Emergency Room/Hospital admissions that I've had since I started dialysis and the issues they were addressing (or the "diagnoses"):

1/24/17 - regular office visit with PC (just updated meds I was already taking)

• Major depressive disorder, Hypothyroidism, Acute Maxillary Sinusitis (regular office visit) with PCP

1/31/7 - Urgent care (prescribed guaifenesin/codeine cough medicine)

• Acute cough, congestion (nasal)

2/5/17 - Emergency Room (prescribed doxycycline antibiotic for 7 days)

• Upper respiratory infection, pneumonia

2/7/17 - ENT appointment (had a myringotomy performed on left ear)

• Eustachian tube disfunction, acute ethmoidal sinusitis, dizziness

2/7/17 - Emergency Room (subsequent admission to hospital...ambulance ride...yay........)

• pneumonia

2/7-2/10 - hospital

• pneumonia

2/17/17 - hospital follow-up with PCP

• hospital discharge follow-up, pneumonia, recurrent sinusitis, ear pressure, snoring, tinnitus

2/23/17 - CT scan of sinuses

3/1/2017 - Pulmonology in prep for sleep study

• sleep apnea

3/7/2017 - ENT appointment (new doctor - reviewed CT scan and found that sinuses 95% full)

• chronic pansinusitis - referred to allergist

3/14/17 - Allergist

• nasal congestion with rhinorrhea (talked about IGG levels and how IVIG infusion may help)

4/13/17 - Urgent care (prescribed tamiflu and levaquin)

• tested for flu (negative), clinical pneumonia

4/20/17 - Urgent care (prescribed levaquin, but a higher dose)

• another chest x-ray, clinical pneumonia

5/2/17 - IVIG Infusion

5/5/17 - called PCP to prescribe antibiotic over the phone because pneumonia not any better

5/9/17 - Urgent Care (prescribed one-a-day inhaler and nasal spray)

• RAD (reactive airway disease) with wheezing, chronic rhinitis

That's 15 appointments/admissions, and they're all surrounding the same thing.  Why is that??????  What do I have to do to get someone else to see that this is a problem.

And do you know what the worst part is?  I'm not any better...I'd actually say my cough right now is worse than ever.  I've had 2 weeks since the end of January where I wasn't having sinus/lung issues, but I'm sure those two weeks were missed due to dialysis sucking.  Oh yeah, remember that ALL of these appointments are happening either on Tuesdays or Thursdays because I've had dialysis every Monday, Wednesday and Friday since January 25, 2017.  If anyone ever wonders why people on dialysis don't work, this should give you some ideas.

I'm so frustrated.  Since leaving Mayo's care, I have honestly just been scared for my life.  There isn't a single doctor that I see right now that is looking out for my overall care and that terrifies me.  Honestly, I'm scared of dying from a heart attack (from dialysis) or a stroke (from the ridiculously high blood pressure).  I found out during yesterday's visit to Urgent care that my last chest x-ray showed that my heart was enlarged.  I did a little research and found that this happens with dialysis patients and people who have high blood pressure.  The long-term effects are that the heart becomes less and less efficient at pumping blood.  That kind of seems like an essential function, and it doesn't look like there's a whole lot I can do about it except get my blood pressure down.

My blood pressure is a whole different issue.  As a dialysis patient now, any doctor I talk to about blood pressure INSTANTLY thinks it's a fluid-overload thing.  It's ingrained in them and that sucks.  That is the case in most dialysis patients (and me sometimes), but the thing is my blood pressure is astronomical no matter what my weight is.  I can come off that dialysis machine at my dry weight, and my BP will still be 180/113.  Early morning, middle of the day, late at night.....always high.  What's stranger to me is that most people during dialysis have issues with their blood pressure dropping too low.  That's literally only happened to me 4 times so far.    Most people have to put their feet up and recline their chairs to help keep their blood pressure high enough (did you know that lying down is when your BP is the highest??) but not me.  I sit in that damn chair with my legs down and the back upright.  It's probably the LEAST comfortable chair you can imagine.  If I'm lucky I'll get to put my feet up for 1/2 an hour, but then the next BP check will show it jumped right back up and down my legs go (which does great things for the edema around my ankles and feet).  Yesterday, I was having a pretty decent run, BP wise, but then near the end it jumps right back up for no apparent reason as nothing has changed in the physical process at that point.  Then, during rinse back (when they give you back your remaining blood with a saline flush) it goes higher just because of the extra fluid coming back into my body.

Yesterday's blood pressures

My nephrologist doesn't show enough concern about it.  I can contact her via MyChart, and she's great about responding, but she first talks about dry weight (insert eyeroll here) and then prescribes another BP med.  The thing is that she never checks up after she's prescribed something. I should be seeing her at least every month in clinic, but that hasn't happened.  When you're a dialysis patient, the doctor's come to you, but she can't seem to find the time.  I've seen every other dialysis patient's doctor in my clinic, but I've only seen mine twice.  MyChart is a poor substitute for in-person visits and conversations, so I've got to make some changes.

Today I'm going to start the process of switching to home hemodialysis.  It'll just start with a phone call, but it's a big step.  I've been waiting for a longer period of stability, but after 3 1/2 months of nothing but issues I think it's time.  Everything I've read and heard tells me that doing hemo at home overnight (nocturnal) will provide me the best quality of life.  I'm not sure if that's the route I'll go, but I'm at least going to start the process of figuring it out.  This means I'll have to stick myself with those gigantic needles, which sounds awful, but hell, I climbed out on my roof this spring to help Joacim and I am TERRIFIED of heights.  So I figure if I did that, I can stick myself with gigantic needles.  It's a mind over matter thing, and I think my mind is pretty strong and determined.  This also means I'll have to find another nephrologist, which may be a good thing for me (not all nephrologists take on patients who do home dialysis).

Tomorrow, I have an appointment with my PCP again.  I'm going to convey my concerns to her and ask what she thinks I should do.  She's actually a really great doctor who takes the time to listen, so I'm hoping she has some good suggestions on where to go from here to address the sinus/lung issues. Many may be wondering why I don't go to her every time I'm sick.  I would actually prefer to do that, but she schedules out a month ahead, so there isn't a way for me to see her while I'm in the middle of a sickness.  I go to the Urgent Care clinic where she is (same system so she can see all of the notes) but that's the best I can do.

May 10 2017 - worries from Jenn Trunk on Vimeo.

May 11 2017 - early morning voice from Jenn Trunk on Vimeo.

Part of me is so self-conscious about these videos because I look so worn.  Dialysis is very hard on your body, and on your skin, and it ages you prematurely.  There is a man in my clinic who is technically 2 years older than my dad, but he looks like he could be my grandpa.  But these videos also remind me of where I am at this time.  I often look back on old posts now to see how much has changed.

I posted a few entries last week about my IVIG infusion and arm infiltration (another shit week).  The infiltration sucked.....it's painful and terrifying because I didn't understand what could've caused it.  Luckily, through United Health Care, I have had access to a dialysis nurse case manager, and she explained it perfectly.  Remember me talking about the janky way that the veinous needle was put in by the new tech?  I could feel the tip of the needle, and it's likely that she punctured the other side of my fistula when she cannulated me.  The needle didn't go all the way through or it would've infiltrated immediately, but it was resting on the surface of the inner vein wall.  And 27 minutes in to dialysis, it's likely that my vein moved, causing a vacuum-like effect on the needle against the wall, and then the needle went all the way through causing the infiltration.  You see, THIS is good information to have!  I mean, the explanation I received at my clinic was "well, sometimes it just happens".  Um, no.  THAT'S not a reason....that's an excuse.

This was my arm last Thursday at my extra dialysis session

This is my arm today, 7 days after infiltration

There are a few other issues that are concerning to me as well:

• I can't smell anything (not even my dogs' breath)
• I can't taste anything (not even vinegar)
• I've lost at least 1/4 of my hair, and the texture has completely changed
• My fingernails are brittle and tissue-thin.  I've been getting gel-manicures just to keep them from tearing off of the nail bed, but I may have to stop that soon because taking the gel polish off is causing problems.  I'm not sure what my next options is after that.  This isn't a vanity thing...this is a pain thing.  Imagine all of your fingernails tearing off, leaving your nail bed exposed.  Or having your fingernails break in tiny little places along the side, and then getting snagged on every article of clothing you come into contact with.  Imagine trying to run your fingers through your hair, and getting stuck because your hair gets caught in the cuts of your fingernails.
• I notice than when I'm having more issues with my sinuses then I get migraines during dialysis.  The last 2 runs have produced some whopper headaches, and oddly-enough, the thing that eases them is standing up, which is essentially the last thing anyone with a headache wants to do.  I was getting OK with going to dialysis, but when the headaches come back, I dread it with every fiber of my being.

Going to dialysis now is getting harder, mentally, because the weather here in Minnesota has been PHENOMENAL the last week or so.  Spring is here, and it's glorious.  I'm realizing I have no tolerance for heat anymore, so these few weeks we have here before it gets too warm are important to enjoy.  That's why leaving for dialysis at 1:45pm sucks.  Dialysis sucks.  After dialysis has been sucking too.  It all sucks.

I'm reading Sheryl Sandberg's new book called "Option B:  Facing Adversity, Building Resilience, and Finding Joy".  I'd been hearing her interviews in the media about how little she understood grieving until she lost her husband unexpectedly, and this struck a nerve with me because that's what I'm doing every day....grieving the loss of my other life.  This book isn't wow-ing me right now because it seems to focus on traumatic events rather than chronic things, but I'm not finished yet so I'll reserve final judgement.  I really want to get to the "finding joy" part, because I am really struggling with that.  One of the things she (Sandberg) did was to write down 3 things she was grateful for every day, so I'm attempting to do that to see if it makes a difference in my emotional state.

This was a very long post, but I had a lot to say.  It's 8:15am, and Izzy's still asleep, so I'm going to go enjoy the silence for a little bit more.  Thanks for reading.

I couldn't make it up if I tried

I went into the clinic early today to get the extra fluid pulled off.  There is a new tech at the center (I don't think she's new to being a tech, but she's new to the clinic and is replacing a permanent tech that's been at the center for a few years).  Anyway, she stuck me for the first time today, and it felt like a disaster from the beginning.  Granted, it's always hard for me to tell what's going to be a disaster because I'm literally fearful of anyone that comes near my fistula that hasn't needled it before.   It's fucking terrifying.  She got the arterial in just fine, but the veinous needle she put in a completely new position (you can see it's the needle closest to the bottom of the photo below).  It didn't hurt, mind you, but it didn't feel right either.  It's like I could feel the tip of the needle in my vein, and it was just strange.

It's at this point where any knowledge of fistulas I have runs out.  I have to trust these people because they've stuck a lot more fistulas than I have, and I have to assume they know what they're doing or HOLY SHIT.....so I did.  And I wish I did't, because my gut was telling me this wasn't right.

I got through the hour of UF and successfully pulled off 2 kg right away, so that was great, but 27 minutes after we started actual dialysis (cleaning), I was lying down (because my bp was low...weird right?) and sleeping (see previous post) when this searing pain started in my fistula.  It turns out that, somehow, it infiltrated (needle through fistula) and we had to stop the run entirely for the day.  My arm blows up like a tennis ball is tucked under the skin, and it is indescribably painful.

I think the worst thing for me in that moment is how angry I was at myself for not trusting my gut.  I'm confident that if I would have asked/demanded that she move the janky needle, then this would not have happened.  And they were all so blasé about it (by they I mean the clinic staff).  I know that they see this shit all the time, but I haven't.  I've infiltrated my fistula one other time, and that was my own fault because I had a cramp in my foot and stood up (stupid, stupid mistake), but I was literally just lying there, perfectly still, sleeping, and it STILL happened!!!  What am I supposed to do with that?  "Pray" that it doesn't happen again?  That's not fucking good enough.  I'm pissed.  I'm pissed because of how little I know about hemodialysis.  Or about accesses.  I asked right away for them to start training me on self-cannulating (sticking myself) because I need to suck back some control in this whole never-ending nightmare I find myself in.

And it feels like there is this weird dynamic with clinic staff when you start asking questions.  Immediately, there is a sense of defensiveness that I sense.  I realized today that the nurse in clinic (there's only one) has no idea how to run the machines.  Now maybe that's not her job, but it sure as hell seems like something she should know.  I mean, there are only 3 staff members at my particular clinic (it's 10 chairs)...there's the nurse and 2 techs.  And when you have a new tech, and a tech at lunch, and a nurse who doesn't know anything technical, well.....it feels scary.

Surely this can't be how it's meant to be.  I just wonder how many things will happen that I'll just "have to get used to" or accept without a reason.  I'm not good at that, but I think it'll save my life in this case.

This is what it looks like a few hours after I left the clinic.  I've been icing it, but I think I need to switch to heat at some point (although I'm to sure when) to help the pooled blood re-absorb.  Now, because of this, I have to go to a DIFFERENT clinic tomorrow morning at 7:30am and do dialysis since I didn't really get any today.  As a dialysis patient who has to be connected to this machine nearly every other day, any extra sessions feel like they're stealing time away from me.  My nephrologist added another blood pressure medication yesterday, but one of the side effects of it is edema (fairly common side effect with BP meds that I've avoided thus far) so now I'm worried that this extra fluid is something I'm going to have to deal with in order to have lower blood pressure.

I'll have spent ever day this week doing something kidney related, and I just want a break where the sun is shining and I have energy and am at a reasonable weight.  

I should be...

...in a beautiful dress at the NKF Orange Gala taking place right now with my Adam, Noel, Jen & Pepper.

...feeling better.

...able to write anything legible.

...able to plan for something next.

...enjoy a good day when it comes.

...able to tolerate dialysis better.

...myself again.

But none of these are coming to fruition.  I'm not able to check a single one off of the list today, or any day recently that I can recall.

I stop blogging because the thoughts in my head get so jumbled up now that it's hard to keep grasp of all of them before they slip from my memory.  If I think back to when I started dialysis in January, I'd say that most of the days just kind of blur together...I have this "fog" that seems to have settled in and made itself all comfy in my brain and I just can't shake it.

Some days I wake up and my brain is razor sharp again....I can feel my "edge".  I feel witty and wise and hopeful.  But then I sleep, and wake the next day to find that the fogginess has returned.

I talked to my friend Amy about it yesterday....she's really the only one that gets anything I'm saying anymore :)  I'm worried about the side effects of Xanax, which I take to keep myself somewhat sane. I started taking it when I started PD because it was SO difficult to sleep with all of that fluid initially.  I'm taking the XR (extended-release) version and it's not supposed to be as "addictive" but I'm not so sure.  I honestly haven't tried sleeping without it recently...it's just become another pill.  But I'm experiencing significant memory gaps that I can't quite explain, and it's honestly frightening.  The great thing about Xanax is that, in regards to dialysis, it alleviates a lot of the symptoms I have after treatment (i.e. complete attack on my central nervous system).  They'll go away eventually, but I swear I don't think I'd ever fall asleep waiting for the symptoms to fade, so I take the Xanax.  I've started to do a little research, but I think this is certainly something I need to address.  I'm going to take up my friend's advice and try to work on getting to the point of taking Xanax on dialysis days, but it's going to take some time.

Anxiety is like this velcro creature that seems to be wrapped around my chest.  The battle in my brain feels like the biggest fight I'm in.  I spend SOOOO much time in my own thoughts...feeling every little weird sensation that happens in my body, and then I run wild with all of the worst thoughts.  It's impossible not to.  This sucks every single day.  I hate it.  And I'm scared that this is all there is now.  I'm REALLY scared of that.

There's always been something in the future to look to (even though it wasn't always good).  But there's always been SOMETHING.  Now there just isn't.  Every day is just swimming into the next.  It's the end of April now.....summer will be here soon, and then all of a sudden it was last Christmas.  I mean, seriously...that's how it feels.  I'm here for everything but missing out on it all.  I just can't seem to re-engage.  I can't envision what the future holds.  People talk about living in the moment more, and I gotta say I'm not all that much a fan.  I want a future to imagine.....I want to think about a dream vacation that doesn't involve the nightmare that is dialysis.

Dialysis is working according to my labs.  My clearance is good, my electrolytes are within range, my hemoglobin is going up and so is my albumin, but I feel worse now than I did on plasmapheresis. I had pneumonia in February that landed me in the hospital, and I have it again now.  I caught it early this time, going to Urgent Care the moment I noticed the grumblings in my chest.   Pneumonia is a big damn deal, and it's really difficult to function.  I feel fortunate that I stayed out of the hospital this time as they gave me stronger antibiotics in Urgent Care, but I've gone through 2 rounds now and I'm no better, nor will I be until I get an IVIG infusion.

I had one scheduled 2 weeks ago, so I drove downtown to the U for my 3:00pm appointment.  When my doctor's assistant scheduled the time, I messaged her and expressed concern that they couldn't start it earlier as I told her this was usually a 5-6 hour infusion for me.  She negated my concerns and told me that the infusion center told her it would take 2-3 hours.  But I went anyway...once there I told the nurse how my previous infusions of IVIG went at Mayo (usually takes 5-6 hours because of uncontrolled blood pressure) and we both agreed to postpone it, so now it's set for next Tuesday.  Until then, I'm just trying not to get any worse.

I bought tickets to Wicked for Izzy and I this Sunday.  Fingers crossed that I'm going to be able to keep up my end of the deal on that one and actually take her.

I'm putting a lot of hopes on this IVIG infusion....that it's going to be the mystery cure for the weird yet all-consuming things that plague me.  I have severe issues with my sinuses that aren't seasonal anymore and I've got everything crossed that an immune-system boost will alleviate a lot of it.  I have a sleep study scheduled for next Wednesday that I will probably have to cancel because I can't sleep lying down right now (which kind of makes that time spent studying my crappy sleep useless). This sucks in SO many ways because they are renovating the sleep center right now, and they're only down to 4 beds.  I've been waiting 2 months to get in to this appointment because apparently my snoring is hideous (enough to make Joacim willingly sleep on essentially a glorified futon for 3 weeks in March), and it's certainly not better with pneumonia/sinus-y issues.  Fuck, I'm an awful mess right now.  And in the back of my head I'm wondering what to do next if the IVIG doesn't work.

And a crappy week wouldn't be complete without another trip to the ER and a stay in the hospital for a few days

I need to update about what's been happening the last week or so.  The last post I made had me in the ER on a Sunday night due to problems breathing.  I was discharged to go home that same night, had a crappy night of sleep and then dialysis that Monday morning (which would've been Feb 6th).  That dialysis session was also quite rough, and I had one of the worst migraines I've ever had after that.  I came home, went straight upstairs to my bed with my clothes on and laid there all night.  There was just no relief.  I took the Imitrex the last half-hour of treatment, and I took it again at 7:00pm, but by 9:00pm it was STILL throbbing and I was out of options, so I just sat there in my room, as dark as I could get it.  I couldn't lie down because my lungs were so full of fluid that I'd just cough, which exacerbated the migraine.  I can't remember being more miserable than I was that evening.  I could LITERALLY hear the ceiling fan cutting through the wind and it was killing me.  Times like that make it hard to see any good in anything.  I got frustrated with Joacim because all I wanted/needed at that moment was for someone to take are of me...to know what my migraine medicine was and where it is without me having to provide every single detail.  I just wanted a nurturing, caring home nurse who would attend to my every need.  Joacim sometimes has a hard time with this because he doesn't know what to do, and he thinks that leaving me alone is the best thing.  Sometimes he's right, but sometimes it feels uncaring.  He can't read my mind, and when a headache is that bad I can barely talk, so I take what I can get.

That next morning I woke up and walked around the house and saw the sad, sorry state of affairs.  When I have a migraine, time moves so fucking slow.  Like I'm just trying to figure out how to get through each block of 5 minutes until I hopefully become so tired that I just pass out.  But then I wake up (usually headache free) and it feels like I've been out for days.  Maybe my head is finally clear enough that I can see how far things have deteriorated.

This picture is of our spare bedroom, where Joacim took up residence about 3 weeks ago.  Doesn't look comfy, does it?  But apparently it's a whole lot better than trying to sleep next to me, and I can't say I blame him.  I sleep upright now and have been for the past few weeks because of the coughing, and most nights I only get 5-6 hours of sleep.  Even when I do sleep, I apparently snore now, and it's loud.  I'm embarrassed, but I believe it because I've woken myself up a few times doing it.

This is where I sleep.  Notice the large volume of pillows (I think there are 5 of them there) needed to help get me through the night.  The lack of sleep is not helping me heal in any way, shape or form.

Because of the snoring and the constant sinus issues I've been having, I made an appointment to see an ENT and it was on Tuesday.  I'm greeted by this form, which I've mentioned before is just awful.  Luckily there were a lot of check boxes that didn't require actual writing, because it's worse than ever now.

Along with the chronic sinus infection and bloody noses (in part due to Minnesota winters) and snoring, I've been having issues with the fluid in my ears.  It feels as though my Eustachian tubes will never fully drain, and it leaves me feeling like I'm walking around with a plastic bottle on my head, only on one side.  I also started to have this horrible high-pitched ringing in my ears.  I've done everything I can think of (the scuba-divers method and everything) but nothing works, and I think this is contributing to the migraines.  The ENT wasn't the best (smarmy little man who I felt wasn't taking my concerns seriously enough) but they did the full exam.  I have some hearing loss in my left ear that I'm confident occurred during the X-Ambassadors concert during the Basilica Block party last summer.  My friend Steph and I went, and we had VIP passes (awesome) that stuck us right in front of the enormous speaker and I didn't have my earplugs with me.  BIG, HORRIBLE MISTAKE. Anyway, this doctor didn't seem to think that there was much that was wrong.  He did a culture of my sinus mucus (which included numbing of my nose and throat and a very long metal probe in my nose, and a visual examination of my eardrums to see if there was fluid collecting behind them, but he didn't see anything.  I was desperate for relief and he suggested that we could try a myringotomy, which is a small cut in the eardrum, like what toddlers get when they're getting tubes put in their ear.  He did the myringotomy, and I'm pretty sure that was the dumbest idea I'd ever had.  There doesn't feel like there's any pressure anymore, but I also feel like I'm completely lopsided because I can't really hear anything out of my left ear, and whatever I CAN hear just sounds echoey.  It's just awful.  And there's still ringing.  Fuck, dumb idea.  He said it should take a few weeks to heal and gave me a prednisone taper to take.

The scariest thing about that entire trip was the enormous difficulty I had walking from my car to the parking lot.  My shortness of breath was terrifying, and I had to stop 2 times on the way to the office (it's not a very far walk).  I went straight home after that and headed upstairs, having to stop on the half-landing to catch my breath.  I made it to a chair upstairs and pretty much stayed there the rest of the night.  I'll admit I was terrified.  I had been to the ER for pneumonia and they weren't really confident, and I was afraid that they weren't going to take me seriously since I had just been there, but they DID say to come back if it wasn't getting better, so I did.  I had Joacim take me this time because I honestly didn't think I could drive myself.  It was later at night (my usual time to decide to go to the ER) so I had Izzy and him wait in the car until I was in back and sent them home so they could get some sleep).  My pulse O2 was below 90 when I arrived and my BP was 190/117, so clearly it was a good idea I came.  The doctor I saw this time was much more urgent with her action and decided relatively quickly to admit me to the hospital.  I was honestly so relieved I just wanted to cry.  I wasn't feeling any better, but I felt I was going to be in good hands, except for this IV which hurt like hell.  Nurses always go for that vein because it's so big and juicy (as you can tell by the blood splatter which is in part due to my high blood pressure), but there's so much scar tissue there from all of the plasmapheresis that it hurts like crazy.

My friend, Jessica, saw my post on Facebook and came to the ER to bring me a few things (including snacks because I was starving), and I can't thank her enough.  It was just nice to have someone there to talk to and distract me.  About an hour after I arrived I took an ambulance ride to Methodist hospital (which is about 20 minutes away).  They were quick to put a pink bracelet on my fistula arm so that no one would try to draw blood or take a blood pressure in that arm.

And I was thrilled that they moved the IV into my wrist (well, as thrilled as one can be with the thought of another poke).

And then respiratory therapy started to come in for albuterol breathing treatments.  They also gave me this spirometer to use 10 times an hour to help work on the deep chest congestion.  At this point it was confirmed that I definitely had pneumonia, so they started a course of daily IV antibiotics and 40mg Solu-Medrol (steroid) every 8 hours.

I got very little sleep that evening because they started the IV antibiotics at 3am, plus all of the vitals checks and whatnot.  I had to do inpatient dialysis on Wednesday, and it was the worst.  There were 4 of us in a really cramped room, I had had enough of lying in bed, and I got literally THE WORST MIGRAINE IN THE HISTORY OF MIGRAINES.  The worst part about this is that the doctor on call wasn't comfortable giving me Imitrex because apparently it's contra-indicated in people with high blood pressure.  Triptans (most migraine meds) have a tendency to cause high blood pressure, so it's not a great idea to give it to someone already suffering from it.  This was totally news to me because I've been using Imitrex for the last year whenever I have a migraine, and especially the first 5 dialysis treatments.  That information pretty much scared me straight and I won't be using Imitrex for a high-blood pressure migraine anymore.  That being said, I spent that entire night in bed writhing in pain.  I mean, this migraine just would not lessen.  All of the muscles in my neck and upper back seized up and I wanted to lie down, but I couldn't because then my lungs would fill up with fluid and I'd start wheezing and coughing.  I must've slept a little but when I woke up the next morning I STILL had a headache.  The doctor gave me an oxycodone to help with the pain (thankfully) and that did take the edge off of the pain.  Eventually my BP dropped enough that he was comfortable with the Imitrex, which was administered subcutaneously in my stomach.  That was a mistake, because my BP shot up sky high after that and I spent the rest of the day trying to walk it off on the 4th floor of the hospital.  Luckily my headache was gone...I'd take high blood pressure over a headache any day.

I fought hard to go home that day, but after my BP rose I knew it was pointless to try to argue, so I had to stay one more day for another round of antibiotics and Solu-Medrol.  The doctor wanted to make sure that we kick this pneumonia squarely in the teeth before I was discharged.  Luckily, Izzy and Joacim were able to visit me that night and bring me some stuff from home, including a soft nightgown (hospital bedding and dressings are notoriously bleached and crunchy and irritating).

And my dear sweet daughter tucked in a few caramel candies that I love in my request for chocolate chip cookies.  This kid knows me well :)

I took a picture of this bruise at some point because I've had it since January 5th.  These things just don't go away with any expediency.

I was able to check out Friday morning and my friend Ellen came and picked me up because Joacim was at work.  It was important for me to be able to dialyze in my regular clinic on Friday, and I had just enough time to get home and soak in the tub before dialysis that night.  Check out this ghastly pale skin....hard to tell where my legs end and the tub begins :(

So last Friday's dialysis went remarkably well....dare I say "good".  I kept my legs down the entire run because putting myself in a reclining position (which is pretty typical for dialysis patients) makes my BP rise, so by dangling my legs it stays lower.  The awful side effect of this is enormously swollen ankles.  After dialysis, Joacim and Izzy picked me up and I felt so good that we decided to go get sushi.  There's a great little restaurant in town that we've missed dearly, and I said screw it, I'm hungry.  I didn't eat any raw fish (only rolls and rice) but it was delicious and awesome and felt normal.

I woke up Saturday and felt pretty awful.  This wasn't kidney related, but it was related to the fluid in my ears still.  I was pretty useless when it came to doing anything around the house other than breaking things.  Joacim was trying to remove a clog in the dryer venting and that took awhile (unplanned), and then I went and broke the garbage disposal by allowing the tiniest glass bowl to slip through and it shattered.  So, my dear, handy husband had to take everything apart, remove the garbage disposal and clean it out (along with the pipes) and put it back together.  I tell you, at that point, we were all feeling pretty low.

The one bright spot to the weekend was a special delivery from a friend I met on Instagram.  Social media is sometimes awful, but it has bright spots for people like me.  She sent me this colorful little care package to lift my spirits and it did the trick!  A nice cup of chai that evening, spent reading a book with Izzy, was the perfect end to a crappy day.

And then on Sunday we had a little bit of normal.  I don't remember much of the day, but near the end we all sat down and helped Izzy study for her math test that next morning.  I'm glad I was healthy enough at that point to help out, and to just appreciate the moment.

Still sucking in every way imaginable

So when I posted last Friday, I was in a dire place where I didn't know what I should do.  Sadly, I'm still at that place but for different reasons.

I woke up Friday morning still feeling like I was drowning in my lungs and started calling the clinic and my doctor's office.  I found myself in the vicious cycle of waiting on hold, leaving voicemails in general mailboxes and speaking with the nurse at my clinic who has a way of talking that leaves me frustrated.  My observation is that she's noncommittal in her answers.  What I mean by that is when telling her my symptoms and my frustrations with not knowing what to do, she'll say "well, you should probably go to the ER".  What in the hell does "probably" mean????  I think I asked her that but in a nicer way.  I missed my team at Mayo right then more than I ever have.  Mayo understands patient-centered care.  If I were at Mayo with these symptoms, my doctors would be actively working to create an action plan to attempt to address these immediately.  Now that I'm outside of that, I have to do all of the work and nothing feels immediate.

But my prodding and freaking out worked this time because my new nephrologist and clinic came up with a plan.  I went into dialysis an hour earlier on Friday, and for the first hour we just did ultrafiltration (which means I'm connected to the dialysis machine and it's only pulling fluid out of blood instead of pulling fluid AND cleaning it).  Doing this, they can remove up to 2 L/hr which is awesome.  After the ultrafiltration I'd do my regular run, where they'd pull another 2 L overall, and the combination worked.  The ultrafiltration part was much nicer than dialysis, and the only thing I noticed was that I started to get really really cold...small price to pay to be able to breathe again.  I felt a noticeable difference after Friday's run, but sitting in that damn chair for 4 hours nearly drove me batty.  This is a picture of the machine near the end of the run...at that time they had pulled 3845ml!

Even though I was nearly 4kg lighter (8.5 pounds) my legs and ankles were incredibly swollen.  The 2nd half of the run I sat with my legs down (instead of lying back on an incline) because it kept my blood pressures lower, but that meant that gravity became my enemy again and dumped all of the fluid in my ankles.

That night (Friday night) I'm particularly grateful that Izzy was still staying at a friend's house because I think I threw up 5-6 times.  And it really freaks her out when I vomit (who can blame her).  No idea why....it started about 2 hours after my run, and just continued intermittently for a few hours.  I remember sitting on the toilet, pooping and vomiting at the same time, with snot running down my face from the puking thinking "yes, this is the very definition of hell".  It's like my entire body was rejecting everything inside of it, all at the same time, which is why a bucket is now a regular feature in our bathroom.  I'm not sorry for talking about the graphic details, because it's the truth of what's happening, and I write this to capture all of the gritty details.

So after spending the evening vomiting and somehow drifting off to sleep, we had to get up at 5:30am the next day to drive to another center in Bloomington for a 2-hr ultrafiltration run to remove the rest of the fluid.    It was a nice clinic with upbeat staff.  And I have a feeling I'm going to make a lot of friends as my time on dialysis progresses, as most of the people in there are almost twice as old as I am, and they're pretty sweet.  This is a pic I took before, and you can still see all of the swelling around my eyes.

We were able to pull off another couple of liters of fluid at the end of that, so from the time of my initial weigh-in on Friday afternoon to my weight after Saturday's run, I was 13 lbs lighter.  A HUGE difference.  I felt human again....lighter....no headache.  Just an incredible difference.

Sadly, the giddy joy I was feeling didn't last long, because in addition to starting dialysis I've been fighting a sinus/upper respiratory infection all at the same time.  Fuck, I don't know what issue is caused by what problem anymore, but I was still having trouble breathing.  I sucked it up through Saturday, but by Sunday I really couldn't walk up and down the stairs.  I waited and waited for relief...took a bath...sat in a dark room and watched Netflix...anything to try to keep my anxiety from making it worse.  By late afternoon I started to get really worried.  I have been feeling lately like I'm breathing through a straw...you heard it on the video from my last post.  By Sunday, that straw had become a coffee stirrer, and I swore that something really bad was going to happen to me if I didn't go to the ER.  Again, I've covered how terrifying that could be, but this time I just didn't care.  I needed relief, and I was so afraid that I was overthinking it or being silly that I just drove myself there.

Now you may be wondering why I would drive myself to the ER.  Joacim and Izzy were both at home, and I could've wrangled them up to take me, but most people don't understand why I do it.  I just hate the fear that I could be causing in Izzy every time she has to see me in some medical distress in a medical setting, and I can't stand having people sit and watch me as I'm suffering.  Honestly....it doesn't do me good in that setting to have people around.  I can't really talk much as I'm having a hard enough time breathing....they're kind of anxiously looking around wondering what's happening and I know it's going to be a couple of hours before anything happens, and I just hate that scenario.  So I drove myself while they stayed home and had the most normal evening they could while I dealt with my shit.

So I went to the ER (one that I've been to before but not recently) and they were very nice and kind.  I felt better going there because I knew that this wasn't fluid-overload related (meaning I felt my issues could be separated from my kidneys, which made me feel safer).   They took me back right away because my BP was so high (170/110), did a chest x-ray and labs and I waited.  I waited for quite awhile, actually, which was frustrating because my BP was rising and my breathing became more labored.  Finally, after 2 hours of lying in that bed watching the Super Bowl, they came back and told me that they *might* have found the beginnings of pneumonia in one of my lower lobes (guess it's harder to tell on people on dialysis???) and were going to treat me right there with an IV antibiotic and change the one I was on at home to a stronger one.

They gave me a breathing treatment too to try to alleviate the issues I was having.  Sadly, that didn't do much.  I panicked a bit because I didn't want to be released from there feeling as bad as I was. I couldn't imagine trying to go home and sleep one more night in that condition, but that's exactly what I had to do.  I felt that the ER did a great job of addressing all of my concerns, but there are so many factors for me now that nothing is a quick fix.  Maybe I just needed someone to tell me I wasn't going to die in my sleep that night...because I swear that's what I'm fearing right now.  I fear that sometimes I'm "too" strong and push my body too much, because I just don't know where the bottom of this whole thing is.

I saw this following pic in my FB feed while I was at the ER on Sunday night and I literally laughed out loud at the absurdity that is my life.  Do you know how many times someone asks me how I'm doing a day?  It feels like hundreds. When I'm on 5-minute BP checks during dialysis, she asks me how I'm feeling every 5 minutes, and there are only so many ways to say "horrible".

Guess what? Even people like me are susceptible to cracks in the medical system.

After 11 years of dealing with this disease in one form or another, I feel the I'm fairly proficient at knowing exactly who to call when, yet there are times, like tonight, that I was at a complete loss.

Just a recap:  dialysis sessions #3 (which was on Monday) and #4 (Wednesday) were awful but in different ways.  On Monday (#3) I got a migraine 1 hour into the session that couldn't be relieved.  The tricky thing with dialysis is taking certain medications while you're actually getting a treatment.  Sometimes this will be ok, but for some meds, it doesn't really work because the dialysis machine cleans them out of your blood.  So when I get a migraine or my BP goes high, I have to wait until it's already full-on and 1/2 hour before the end of my procedure to take the meds, and those meds take 2 hours to really kick in, so it's a shitshow.  Thankfully, this time, I did NOT vomit on my ride home with a different friend (win!).  But I felt like my lungs were so full of fluid that I just couldn't sleep from all of the coughing.   On Tuesday I woke up feeling not right and was coughing quite a bit.  I went in and sat on our recliner and started coughing so hard that I actually starting vomiting mucus (which is just gross).  Well, that kinda freaked me out.  I mean, a lot of bad things happen to me, but that never had, so I freaked out a little and worried that I was getting pneumonia.  My weight had been on the rise because the 1st two dialysis sessions we didn't remove any fluid, and we only pulled 1.7L on Monday, so I was still on the heavy side by Tuesday.  After the vomiting, I decided to head back to Urgent Care to see if there was pneumonia or bronchitis developing.  Another low point happened when I got to Urgent Care because it was time to take my meds, and one of those meds that I've mentioned before caused me to vomit in the patient room.  But I seriously vomited for about 10 minutes, peed all through my pants and just sat there crying.  The doctor was kind enough to give me a pair of scrubs and the nurse gave me a bag to put all of my peed-on clothes in and give me time to get myself together.  I'm really worried about how labored and shallow my breathing had become, especially upon lying down, so she did a chest x-ray but it was clean.  She gave me a cough medicine with codeine in it to help me sleep, which it did last night, but I woke up this morning with a slight tinge of a headache still. I can handle a lot of things, as described in this blog, but headaches are not one of them.  I just want the world to go dark, silent and on pause when I get them.

I had an appointment scheduled at Mayo today for a 4-week follow-up for my fistula.  I guess we're just calling it a new fistula right now as opposed to a revision, but whatever.  I was so happy/surprised when Joacim said he'd drive me this morning, as it came out of the blue.  He didn't think I could really do it, but even though my stubborn self said I could, I was SO glad and comforted that he was there with me.  I had a REALLY difficult time walking around the campus with my breathing incredibly labored.  The ultrasound took longer (as always) and I had comments such as "wow, I've never seen that many scars before".....good thing I'm not sensitive about the way it looks at this point.

After the radiologist reviewed the films, we left and picked up some extra migraine and nausea meds at the pharmacy because trying to move things like that to a new doc is a lot of administrative energy that I haven't had since starting dialysis.  Then we met with one of the access nurse coordinators to review the results of the ultrasound and come up with next steps.  The dialysis access nurse coordinators are in the outpatient dialysis unit of Mayo, which is not run by a DaVita or Fresenius (major important difference!!!!).  But it still saddens me every time I'm sitting there waiting for an appointment.  As I watch these (mostly elderly) people being wheeled in and out, I just sit there and think about the shitty fate I have.

Yeah, I took the pictures in B&W, but they aren't any better in color.  It's sobering, and I encourage anyone, ANYONE that knows someone who is on dialysis to go sit with them, and watch what it entails.  See if you don't feel like you're going crazy after 3 1/2 hours of not being able to move.  Or just sit with them and keep them company.  I didn't think I'd like that, but I had a friend who did and it was the most enjoyable time I've ever spent on that hemo machine.

Anyway, appointment with the access nurse.  The good news is that the fistula is growing nicely, and the average flow rate overall is 1.297L, which is great!  The minimum is 800ml/min, so it's ready flow-wise.  There is one spot where the diameter of the fistula is smaller than necessary, so I've got to do some hand exercises that I've been neglecting in order to hopefully grow that section and make the entire vein wall stronger.

I'll admit it that I'm TERRIFIED of getting stuck the first time at a dialysis clinic by people who don't know me who don't have vials of lidocaine laying around.  TERRIFIED.  So I was a bit relieved when she thought we could wait another month.  Granted, it's another month with this crappy chest catheter that has gotten even crappier since being transitioned to DaVita.  Make no mistakes, DaVita is a FOR-PROFIT business, and they aren't interested in going the extra step for patient safety unless Medicare says they'll pay for it, and Medicaid doesn't seem to be all that interested either in some of, what I could consider solid safety practices (it's all about the dollars...not about my living or dying).  One of the things that's MOST perplexing is this chest catheter.  I posted a pic a couple of posts ago about what it looks like after a dressing change at Mayo:

See how nice that was with a great little biofilm around the catheter exit site and a tegaderm-like plastic secure bandage around it that's good for 7 days?????  The changes of infection in a chest catheter are high, but Mayo did a phenomenal job of minimizing that.  You know what my dressing looks like after one change at DaVita?

What purpose the gauze tapped round the lumens (that's the things hanging down) serves is unknown to me other than to add weight.  The shoddy piece of gauze with paper tape around isn't even secured properly.  Add to this that they'll take this off to change it every Monday, Wednesday and Friday, thus increasing my risk of infection by 3-fold every week.  Now, I could go in and request that I do my own dressing changes and purchase my own supplies and that might be fine.  But some clinics do not appreciate that, and I haven't figured out if this is one of them.  I've learned that it's important to build the relationships in order to get the best health care, rather than bullying them through like I used to do.  I can ensure my catheter stays as clean as possible in the meantime (but dayum what I wouldn't give for a shower), but I need to figure out if it's worth it too.  If we start using this fistula in a month, it may not be worth it,  but we'll see.

This was not the worst part of the day, though.  I've been steadily retaining more and more fluid since stopping plasmapheresis last Monday.  Each day it's a little more than a kilo, which adds up quickly over time.  I know that this is going to happen because I'm not getting that beautiful albumin anymore which has been helping keep my edema in check.  But it seems that my kidney has nearly completely stopped producing urine too, which is unexpected.  The first two dialysis sessions we didn't pull fluid, but we started to on Monday.  It's a slow process for fluid removal because it's harder on the body, and I'm already having my own share of difficulties right now.  I met with my new doctor on Wednesday, and she's great.  We've got a solid game plan where she'd start looking at alternatives to blood pressure meds (particularly the one that makes me vomit relatively frequently) and increase my Lasix and one other BP med.  So today, when I woke up and weighed myself I was at 66.3kg.  Not awesome, but not the worst I've ever been either.  Joacim and I went to Mayo, and I didn't really eat or drink much during the day, but I could feel the swelling in my abdomen, knees and lower legs/ankles.  When I got home I weighed myself (which was around 3:30pm) and I was already up at 68.3, which was a whole 2 kg gain in less than 12 hours!!!  I started freaking out, panicking.  I know I have dialysis tomorrow, but there's no way we can pull off enough fluid tomorrow to account for 2 days of no dialysis on Saturday and Sunday, and 68.3 is eclipsing the heaviest I've ever been since kidney problems began. In my brain, I'm thinking that I need to be checked into a hospital for a few days to do dialysis to get more fluid off, but how do I go about it?  I tried to get a hold of my new nephrologist, left a message with her on MyChart, called my nephrologist at Mayo, ended up at the nephrology center at the U of M and then called Fairview Southdale to be referred to the nephrology on call (which they didn't have).  All of this effort was in order to try to stay inside the medical system that my new nephrologist is in, which is not one that I've been in before but this was all happening after 5:00pm.  So then we (Joacim and I) were faced with making some decisions and here's what comes into play for someone like me:

• Option A.  I could go to the ER of the hospital affiliated with my new neph.  I spoke to the nephrologist on call there and he said it was unlikely that I would be dialyzed tonight unless I was having trouble breathing (which I was) but he sort of sounded like it probably wouldn't happen.  I told him that this wasn't my first time on dialysis (even though I had started again recently) and that this felt different, that I was having trouble breathing and lying down was impossible.  He was kind and said that I could come to the ER at the U, or I could go to Fairview Southdale (which is closer to me and a nice hospital) ER. He suggested I call the hospital there and ask to speak to the nephrologist on call, and the operator said that they didn't have one.  Um.  Then I asked if they have inpatient dialysis there and she said no.  So I knew that wasn't going to work...I didn't want to be sent to an ER because it was close only to have to be moved by ambulance to a different hospital....I'd rather go to my final destination.  The doc at the U that I spoke with gave me his pager number but I didn't call back.  It felt a little hopeless.  I didn't want to drag my family downtown to an ER we had never been to in the hopes that someone would hear my plea and not make me feel like this fluid thing was all in my head (because that happens).
• Option B.  I could go to the hospital ER where I went when I had internal bleeding from a biopsy back last Easter.  They are part of a different network than my new nephrologist and she doesn't have privileges there which is the biggest downside.  But they treated me well when I went to the ER and got me the care I need quickly and effectively.  And even though they didn't have the most updated records, I felt like I could communicate the last 3 weeks fairly effectively.  But then my new nephrologist was out of the loop, and maybe they'd start pushing drugs for high potassium (which we're trying to rectify via dialysis, and having it done "the hard way" in an ER setting is not pleasant).

In either scenario, I won't going to get there until around 8pm anyway, and by the time I got back for someone to see me, even if they DID decide to start dialysis, it wouldn't be until around midnight.  So I thought rationally for a bit (with the help of some of my FB friends who were out to dinner kindly giving me medical advice :) and decided to just wait it out.  I felt like I was going to suffocate, but I wasn't LITERALLY going to suffocate.  The panic becomes very real and palpable. 

We were worried about Izzy either way.  She has a math test tomorrow that I didn't want my problems to affect so another friend of ours (the newish one that had to hear me vomit) is watching Izzy tonight with her own kids and will get her on the bus tomorrow.  That way, if I do have a freak-out panic moment tonight, it's only Joacim and I that will have to pull it together and Izzy won't miss school.  I took the rest of my scheduled BP meds before Joacim drove her over to their house, and measured my BP when he returned.  It's still not ideal, but much better than it was getting so I feel comfortable in the decisions so far. It's very difficult to breathe and isn't getting better which is one of the most troubling things:

I just want you all to hear what it's like, having kidney disease and renal failure and dialysis and a husband who works a lot with a job that's changing requirements and odd hours and an beautiful 8-year old who we're trying to raise as normally as possible in the most non-normal environment.  Oh, and to cap things off, our dog Murphy made a huge pile of vomit as Joacim walked out the door.  Just awesome tonight.

It's rather late and I'm going to try to sleep.  My plan is to call the clinic first thing in the morning to see if they can get me in. Then I'll be able to speak with my doctor and maybe come up with a different plan over the weekend to remove this fluid quicker.  I didn't expect this to be such an issue so soon, but I also didn't expect this kidney to stop working nearly entirely.  Maybe tomorrow will be different.  I can only hope it is but prepare that it won't.

What I DO know is that we, the Trunk family, need more people in our village.  Many people have offered to help whatever we need, but that's vague and difficult to figure out.  We're working on things we need that will really help us day-to-day, but in the meantime rides to and from dialysis are appreciated, as well as anything that gets Izzy out of the house for some fun sometimes.

Thanks to all of you for listening and commenting.  It keeps the ghosts away.