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.  

AV Fistula update: 8- 11 weeks out

I realized that I never blogged about how everything is going with my fistula, so that's what this post is about.  Back in the middle of June, I had my 8-week follow-up appointment to check on the progress of my av fistula.  First off, we started with an ultrasound, which was a MUCH shorter appointment than it was for the 4-week one.

This is what the ultrasound room looks like.  For my fistula, I lie on my back and my arm is outstretched over the technician's lap.  The ultrasound goes from my hand all the way up to my neck and shoulder.

I had an appointment with the surgeon as well and I was nervous about what he'd this of his handiwork, but he was actually pleased with the development.  I'm up to 740ml/min which is a good enough flow to start attempting to use it during my next plasmapheresis treatment.  Because my fistula is pretty small, the doctor wanted to put the return needle the vein in my elbow (just like an IV), and the blood would be pulled from a needle in the fistula.

I wanted to take a few photos of the fistula before we started using it to remind me of what it looked like.  The more use it will have means the more changes it will undergo (i.e. growing larger and possible more gnarly :(  You can see in these photos already how the veins have already started changing on the underside of my wrist.

Honestly, it doesn't look NEARLY as awful as I had feared (yet, that is).  It's still pretty easy for people to completely miss that I even have it, which is a relief at this point because I still have my chest catheter.

My next plasmapheresis appointment was actually the next day, which would've been a Wednesday.  I was nervous, no doubt, and I had Joacim take me down to Mayo that day so that I could take a Xanax before we tried it.  They give me local lidocaine at both the access and the return, so I don't feel those needles going in, only the short painful pinch of the lidocaine (think about like whenever you've gone to the dentist and had to have a numbing agent in your gums).  The return was accessed without any issue, but we DID have problems on the fistula itself.

I was pretty upset by all of it.  I had the WORST thoughts running through my head, and Joacim took this picture at the exact moment when I felt that all hope was lost.  I was already (in my head) at the point where I was going to need a new fistula and it was going to be ANOTHER surgery and another 8 weeks of waiting.  That's just how I'm wired...I go to the very worst case scenario first, feel out all of the emotions associated with it, and then figure out how to process and get through it.  I'm fortunate in that it wasn't as I had feared.  What happened in this case is called an infiltration, which is essentially when the access needle goes all the way through the fistula instead of stopping within it.  The hole that's created on the other side bleeds a lot internally and internal bleeding is incredibly painful.

This can happen to anyone, and will most likely happen again.  I have a very shallow fistula that requires a smaller angle of entry.  I think a lot of nurses are trained to start at 45 degrees, which is too much for mine.  In order to get plasmapheresis done, we kept the return in my elbow and used one of the lumens from my chest catheter as the draw.

My wrist and hand were pretty tender to the touch, so the nurses got me some ice packs to use during the rest of the treatment.

You can see how the swelling starts right above the fistula.

The swelling became really noticeable once I removed the gauze wrap at home.

The bandaid that is used is a compression bandaid that also has some medicine on the pad that helps coagulate blood.  The square mark on my wrist is where the pad of the bandaid presses on the whole created from the needle to help the site close.

I wanted to show the difference between my fistula hand (on the left) and my other hand (on the right).  You can see how the veins are much more prominent on my other hand due to the swelling on the fistula hand.

Thankfully, things finally took a turn for the better 2 days later when we tried it again.  The video is a little long, but shows the process.

And this is what it looks like when it's working.  The blood is being pulled from the fistula, processed through the machine and returned in my elbow.  SUCCESS!!! 

I wanted to show how big the needle is that goes in the fistula, but the pic is a little blurry.

Compression bandage but reduced swelling.

The next few photos show the progression of the bruising.  It's been 19 days since the first time it was used, and there's still a little bruising along the forearm, but not near as bad as it was.  I'm glad that, even though it looked awful, it wasn't painful (well, for the most part).  I mean, I had bruises in the strangest places, from the lower knuckle on my thumb, to the outer wrist bone.  It was interesting to watch it all develop, but I still hope it never happens again :)

So, that's about it for the fistula.  The BEST news that I've had in awhile is that we're FINALLY talking about getting my chest catheter removed!!!  It looks like we'll shoot for the week after this coming one, so wooohoooo!  Having this chest catheter in the summer has been so difficult.  I mean, any amount sweating can loosen the tegaderm bandage covering the exit site, thus essentially rendering the coverage useless.  It happened today while I was outside talking to our neighbors.  We were just standing there, enjoying the day, but when I got home a few hours later, I noticed that the bottom of the bandage was completely detached from my skin.  I quickly covered it with some tape, hoping that's good enough until I have a dressing change on Tuesday.  I'll be SO happy to be rid of it!