Tuesday, July 17, 2018

kinda of a shitshow day

It feels like everything took a turn for the worse, or maybe not, but at the end of the day, I had very few answers to things that I had placed a lot of hope resolving.

The day started out with going to our dentist to get Izzy's tooth pulled.  I can't believe that I miss the days when my own dad would just make me let him pull them out, but that's just not a battle I want to fight with Izzy, because it WOULD be a very dramatic battle.  So off to the dentist we went.  I don't think she realized it would hurt, which is weird because it isn't the first tooth we've had pulled, but maybe this is the first one that actually hurt.  She cried gentle tears all the way home, and then for the next half hour, and NOTHING I did/said could console here.   I was a little taken aback at the emotional outburst...I think I did a poor job of handling her sensitive nature.  I just think sometimes that I'm so ill-equipped for all of the emotional outburst that are headed my way in the very near future.  The last week has been full of them, and I honestly can't tell if it's hormonal things starting or if it's just her feeling a lack of attention.  Somedays I'm so checked-out that I don't hear half of what she says...I'm just trying to get through the end of the day so I can go to bed, but that's also a terrible feeling with the amount of guilt that goes along with it.  I sure hope the tooth fairy doesn't forget to visit like she did the last time ;)

She's fine now and sleeping in my bed because Joacim moved to the spare bedroom again to get a good nights sleep. Those are hard to come by for us lately due to the intense coughing, and on dialysis nights it's even worse because of the incessant beeping.  Nearly every time, through the middle of the 8-hour run, it starts pinging with an alarm from a kinked tubing that's nearly impossible to find initially in a sleepy stupor.  It seems unavoidable due do my current setup, which means I'm going to have to change it in order to increase the chance that it won't keep happening..

I'm coughing all the time now....sometimes it's productive and there's mucous I can cough out, which helps (but is gross in a million ways and unacceptable/impossible in certain social situations).  Other times it's dry and related to a tickle somewhere in my throat and chest.  The mucous that I have (and will always have due to bronchiectasis) changes daily too.  Some days it's loose but there's a lot of it, and other days its hard and sticky and very difficult to cough up.  I call this mucous plugging, and I can feel it with every breath...probably one of the most annoying things that happen because it's in my ear all the time.  It's probably caused by dehydration, but I'm pretty limited on how much fluid I can take it because, at the end of the day, the only way that fluid comes our is through a 15 gauge  (i.e. HUGE) needle.  And now, on dialysis days, I've been waking up 2 hours or so from when the run is actually over, so I just have to lie here and think about all this crappy stuff floating around in my head until it's over.  Winter will be better because it'll still be dark, but I really need some light blocking curtains in my bedroom.  I have the blackout blinds, but they don't fit perfectly and there are still some gaps that I need to address, but that means I have to pick curtains.  It took me 6 years to find curtains for our loft so I'm not holding out a lot of hope that I'll get this done in the next decade.

I realize Im rambling a little....it's just there were a lot of unrelated things today and I haven't updated in while and it's all just dripping from my brain.

So, onto my most pressing issue right now. A little timeline on all of the appointments/procedures/hospitilizations due to bronchiectasis since the beginning of the year:

1/19 - hospitalization for pneumonia
1/30 - office visit for follow-up to pneumonia
4/30 - office visit for lower-respiratory infection (pneumonia)
5/15 - outpatient bronchoscopy
6/4 - office visit for pneumonia
6/11 - hospitalization for pneumonia
6/13 - inpatient bronchoscopy
6/29 - outpatient bronchoscopy

As you can see, there have been a LOT of issues with my lungs and a LOT of visits to Methodist hospital to try to remedy them.  This most recent episode started on 7/6 with the beginning of some pain in my upper right back, right next to my rib cage.  It was mild at first....honestly I thought it was a kink in my back or a muscle spasm, but not a big deal.  My breathing was better than it had been in weeks, and I was entertaining the idea of FINALLY returning to yoga after a hiatus since Izzy got out of school.  I started taking Tylenol, did a little foam rolling and stretching, but it just kept getting more painful, and it started to affect my ability to cough, which is crucial to bronchiectasis management for mucous removal. So by the following Wednesday, I was in so much pain that I went to Urgent Care.  It was starting to feel like more of a lung issue, but getting into my pulmonologist isn't easy so I went there instead.  Good doctor, listened to my history and symptoms and did a chest X-ray that still showed pneumonia (but in my left lung which is where it was found on 6/4, but after several weeks of antibiotics and a hospitalization).  Worse, the Xray showed nothing of note in the area where my pain was.  The urgent care doc prescribed a muscle relaxer because he thought my acute pain was muscle spasms and some lidocaine patches, but suggested I update my pulmonologist, which I did that evening when I got home.  I didn't get a call back until Thursday because my pulmonologist was in hospital that week and it's always hard to get a quick response because she's so busy, but we got an appointment with her for today and they were able to squeeze a CT scan in for me so we could have some better pictures than an x-ray can provide for these kind of things.

So all this past weekend long I'm dealing with some pretty intense pain....breathtaking as I've described to anyone who'll listen.  No position is comfortable, nothing works to dull the pain, bras are excruciating and I feel this with every breath.   Bending over is THE WORST.   Nothing I've tried has helped at all, and it's starting to wear on me.  But I've also tried to maintain a drop of hope because the radiologist reviewing my urgent care x-ray from last saw the pneumonia, but also thought he saw a pleural effusion in my area of pain, so I was hopeful that the CT scan would confirm the same thing and then we'd figure out next steps.

But dammit all to hell, nothing showed up of significance related to my pain.  And worse yet, my pneumonia is worse and in both lungs now.  I don't seem to grow any specific bacteria in my cultures that they get from the bronchoscopies....it just shows their's anerobic microbes in there, which indicates aspiration while sleeping due to GI issues.  She asked a lot of questions to try to rule things out, and we've tested my immuoglobulines (which are completely normal), but honestly, nothing seems different.  There's no obvious explanations as to why I keep getting these bilateral lower lobe infiltrates....it's not normal, which means there are no answers today.  She suggested I get a full-body wedge for the bed, even though I have an adjustable bed, because even the bend at the waist from my bed could cause some abdominal pressure that could cause GERD-like symptoms.  I've got an esophagram scheduled for 2 weeks to see how my body swallows and if there's anything that could be causing food or acid to be getting back up throat that could mimic the aspiration typical of that anaerobic culture.  It all feels like an incredible long shot, but I'll go down whatever rabbit hole is necessary in order to get the bottom of it.  And also a follow-up x-ray in 4 weeks to see if the pneumonia is resolved with 14 more days of antibiotics and some percocet to help with the pain.  Antibiotics are dosed differently for dialysis patients...we get them every 2 days as opposed to every day for other people.  I'm not sure if that means that they work slower in dialysis patients or what....it was something I forgot to ask when I went in. And Dr. Google was really not helpful today and I"m feeling a bit defeated,  I can handle a lot, but this level of pain for this length of time is starting to wear on me.  What I feel, in the long run, is that I'm going to be adding a GI doctor to my list of specialists that so far include nephrology, ENT and pulmonology.

My pulmonologist called in the percocet prescription in while I was in the room with her, and when she stepped out my pharmacy called to say that the requested dosage they didn't have and was abnormal, so I asked my doctor's nurse if she's make sure to get the message to my doctor.  Since it's a narcotic, I know she's the only one who can fix this, but OF COURSE, when I went to pick up the prescription after Izzy's gymnastics practice tonight, it wasn't there.  The amount of shit that I have to do just to pick up the medical pieces that other people are missing is staggering, exhausting and infuriating.  It's all the fucking time now.  A similar thing happened at Urgent care with lidocaine patches needing some prior authorization from a doctor.  Again, pharmacy called for a follow-up to the doctor, but he never got back to them, which means I didn't get them.  And honestly, I'm sick to death of trying to get a hold of doctors through their office staff....it's just taking too damn much emotional effort right now.  Can't they just hold up their end of the bargain and FIX things without me ALWAYS having get a few follow-up calls from me?????  Please?  Luckily I had some leftover oxycodone to try to help with pain management, but that also means I'm going to be fighting some pretty severe constipation soon.

My life isn't easy.  Here's my daily regimen JUST to maintain my current state of shitty health:
  • dialysis 4 nights a week
  • sinus rinse 2-4 times a day, which includes an antibiotic component that has to be refrigerated and thus not easy to remember to add
  • 2 inhalers twice a day
  • nebulizer
  • compression vest therapy 2x/day for 20 minutes
I just feel it all spiraling...there's no relief.....no health security to even make a loosely-planned drive to Indiana right now because I"m scared something will happen while I"m there and I won't have my care team. 

The only good thing today was the beautiful weather and I completed 2 applications to be a dog/cat foster.

The irony is not lost on me that I thought FSGS and dialysis would be the worst obstacles I have to face.  This lung disease is so much worse right now.

Wednesday, April 11, 2018

Catching up....

 I gotta be honest....I don't feel much like posting here lately.  So many times I start writing the post kind of "in my head" but it all starts to sound stupid and self-centered.  I ask my self questions like "why in the hell do I think anyone actually wants to read any of this?" and then that pretty much kills any ambition I have.

Another reason I don't feel like posting is because things are going pretty OK right now, honestly, and this is the place I come to to vent or rage, and I don't have a lot of that right now.  But in all of the reading that I used to do on all of the kidney blogs that I used to follow, I noticed that, when all the drama was over (for the most part) they all stopped blogging, and that frustrated me.  I wanted to know what they were doing....all of the little mundane things after all of the monumental crises....I wanted to hear stories of their new normal and the journey as to how they got there....I needed to know that it was possible to live again on the other side of transplant or dialysis.  So knowing this, I'm going to work on becoming a more frequent poster again.  Even if it's literally the mot mundane things ever.

I'm a lot frustrated at myself for the entire last year, especially when I realize how far I've come.  We went on a pretty significant walk tonight with Rosie, and I kept thinking in my head "I couldn't do this last year because I was SO sick".  So many things happened in the last year....one of my best friends came to visit me with her family for a few days and it was incredible, another friend of mine decided that her life was much better without me in it and it's hurt me more than I can describe.  I've tackled doing hemo at home, and we finally took a vacation that required me to dialyze while on it, and I finally got back to doing hot yoga again and none of these are really documented well in this blog.  I will forever kick myself for not writing about it, but there were times that I just couldn't, and other times where I just didn't care enough about anything.  I was seriously depressed for part of it, medicated myself, and then finally saw light again.

My best friend and her family with my family during their visit last year
We just got back from vacation last week, and it was probably the most important thing I've done lately.  It gave me the confidence, and it made the world big again.  I was feeling SO restricted by dialysis, and focusing on all of the things I wouldn't be able to do because the travel aspect just seemed to be too much.  But I found a woman who's been dialyzing for years, and called her up....she helped me so much!!  And I sure as hell didn't spend time during the day thinking about dialyzing.  Our days were filled with so much walking that I was actually a little relieved have an excuse to just sit down for a few hours at the end of the day :)

I am suffering a bit from a fairly intense, dry tickle cough that I've had for months.  It'll get better for a couple of weeks in the midst of antibiotic, but it keeps coming back.  I've thought the entire time that it's because of my sinus issues (of which I'm getting surgically remedied on Friday....at least I'm hoping for some remedy) but I did some research today and think it may just be one of the shittiest side effects from my bronchiectasis.  I put in a call to my pulmonologist, who is, of course, not in this week, so we'll see what she has to say.  I honestly get sick to death of dealing with medical crap now that I let things go WAY too long, and then by the time I get a hold of the doctor I'm in a full-blown panic, yet this is the first they're hearing of it and are kinda blindsided by my frustration.  I'm sure there's not much that can be done for this cough, but I hope not.  Joacim has essentially moved into the spare bedroom now because I cough about every 15 minutes ALL NIGHT LONG.  I cough so hard that I vomit.  Frequently.  It sucks all to hell.  I need it to get humid again, because I never seem to cough in the shower, so I'm hoping humidity helps....it's been brutally dry this winter.

My blood pressure is SUPER LOW now, sadly not from the removal of my kidneys but due to a new med.  Now it's a little too low and is causing some dialysis issues, but we'll work on weaning off of some or lowering the doses to figure out what the sweet spot is.  I just cannulated my fistula in the area from my January surgery and it's going well...pressures are good.  I should have a buttonhole established by next week, and then hope to start training for nocturnal dialysis.

I did get to do a fun thing last week with the NKF.  Optum is a healthcare company based here by me, and they have a team of people who were putting together bags full of goodies for dialysis patients that they were going to deliver to city clinics.  I went there to talk to them all about my story and what it's like for me on dialysis.  I didn't have a prepared talk...kinda just went from the hip on this, but it went well.  I got great questions and overall really great engagement from everyone.  Didn't think I could do that a year ago either, but look how far I've come......I hope to get the chance to do a lot more speaking events in the future.

And now a bunch of vacation photos because they're fun and happy :)

Dialyzer (101lbs) and medical supplies (54lbs)

diaysate delivery

first vacation session
First impression of Harry Potter World:  AWESOME!!

Ice cream break

Train to Diagon Alley

Talking photos in Hogswarth

Wet clothes from a ride that, according to Joacim, "we wouldn't get too wet on" ;)

Giant connect 4 at the hotel pool area one night...

Family selfie on the first day at Volcano Bay

Funniest activity with Sue the Raptor

Good to see smiles....

Volcano Bay was amazing

Obligatory family selfie at the end of the day

Boxes of dialysate delivered the day before arrival
First vacation session...

Friday, March 2, 2018

Fistula ultrasound and all the worries, again :(

It's been a little over a  month since my fistula surgery, and I had my ultrasound this past Wednesday. I went into this thing thinking only that they were going to tell me that everything was good to go and that the fistula was ready to use on the lower end.  The thrill and the bruit are super-strong again, so it never even occurred to me that this wouldn't be the result.  Methinks I might have been wrong.

The ultrasound took 1 1/2 hours....anyone that's ever had an ultrasound knows that that's a LONG ultrasound.  The radiologist appeared to be relatively new, at least to AV fistula ultrasounds, and had to call in a different radiologist on 3 separate occasions.  Already, my spider-sense was armed....whether it's right or not, I'm instantly thinking that she was doing it wrong, and so any result is in jeopardy.

I thought the ultrasound was only going to be on the part that was operated on, but it started all the way up in  my neck...actually the left side of my neck, then the right side, around my collar bone, through my upper and then lower arm.  Once it was done, I went to another clinic room because there were some leftover stitches that I asked to have removed by a nurse.  I had tried to do this at home, but no amount of tugging was budging them....even Joacim had a go at them, but then we both worried that we were doing more damage than anything else, so I asked them to do it when I got to the ultrasound.

After they were removed, a totally different person came in the room with a rudimentary drawing that shows the upper part of a body, with a couple of darkened areas on the right arm.  She briefly mentions the "bad news" in that there's stenosis (narrowing) in 2 separate places.  Ummmmm....what????  Did the surgery not work?  Did they even ultrasound the right part?  Where, EXACTLY, is the stenosis?  Now at this point, I know it does me no good to ask her any questions because all of these places pretty strictly forbid radiologists from commenting on ultrasounds.  She told me to go home and that she'd call me later, but I wasn't having any of that.  I mean, what's the point?  What is she going to tell me over the phone?  Was she going to point at this ridiculous drawing and try to explain to me where the stenosis is?  I mean, fistulas are a pretty complicated beast....I wanted to go over the results with a doctor; in the same room, so he could tell me exactly where the stenosis is.  So that's what we scheduled, which will be this Monday at 8:45am.

I'm so fucking nervous for this appointment.  That ultrasound wrecked my day, much like lab results used to do at Mayo near the end of my treatment there.  As the day went on, my thoughts kept spiraling, and I had worked myself into a pretty heightened state of anxiety by the end of it.  As I understand it, there are 3 possible scenarios that we'll discuss:

  1. fistulagram and/or stent : essentially, another rotor-rooter of my fistula and possibly a mesh stent to keep open the area (but they can't stent a particularly long section, which is my issue, and why this seems an unlikely option)
  2. replace fistula with graft - grafts are artificial veins...they are prone to infection, and I can't use buttonholes with it.  They also don't last as long as fistulas.
  3. new fistula in new location - this would likely be my upper right arm.  I have no idea how I would cannulate this are myself, or take out the needs at the end of a run, without making an unholy mess.  I worry about how it would feel, having that fistula on my inner arm....I would constantly be rubbing against it and I fear it'd drive me batshit crazy.

Options 2 and 3 would be absolutely crushing to me, but it's something that could happen.  I have no idea how I'll handle it.  The thing is that this fistula is still pretty new...I mean, it's only a little over a year old.  There are so many people that have fistulas that are 20 years old, and I thought I'd be one of those.  The thought of getting a new fistula only a year into a lifetime of dialysis is so scary to me...I mean, once you run out of places, what do you do?  Do you die?  The end?  Do I give up?  Is it life with a chest catheter?  Oh fuck...I just don't know.  And I'm going to fret about this until Monday.  Even after my appointment, I'm not sure if I'm going to be settled on the answer.  I've considered contacting my surgeon at Mayo Clinic again...I'll have to see how it goes on Monday before I decide that.

Shit, is this going to affect my vacation?  I mean, we leave in 3 weeks.  It took 40 minutes for my arterial buttonhole to stop bleeding today.....40 minutes is a really long time when you're holding pressure, and when you're late for your doctor's appoinment, which I was :(  It's never taken 40 minutes before...usually 5 minutes....15 tops.  But 40???  Dr. Google says that "prolonged bleeding" is an indication of stenosis...this isn't looking good.

This crappy news has me in a complete fog now...I mean a serious brain fog.  All I can do is stare at the TV...I can't read a book or do anything that requires brain power.  Hell, I can't even organize a closet right now because my brain is just not working.  Based off of my numbers, I'm getting adequate dialysis....is this the anxiety that's wrecking things?  It just feels like there's never going to be any significant period of stability in this whole nightmare.  I thought I'd be talking to my team about starting nocturnal home hemo, and returning to some normalcy in my life.  Now everything is completely up in the air again....

Monday, February 26, 2018

What's new?

So....what's new in my world, you might ask?  Well...not a whole heck of a lot.  I'm still going stir crazy in this house.  I'm still not willing to take Zoloft.  I've sucked at meditation.  I started back up with yoga.  I even jumped in like I said I wasn't going to and took the huge step of taking not one, but TWO classes at Lifetime....one of them was a very slow yin-like class where you hold a few poses for a long time....GREAT STRETCHING. But then the class right after that was by an instructor I knew, so even though it was a flow vinyasa, I knew I could rest at anytime and I was excited because I really liked this instructor.  I didn't make it through every pose and sequence in the class, but I didn't give up either, and that always feels good.

It's a lot harder right now to try to start up yoga because I'm so terribly anemic.  The last time my hemoglobin was checked it was at 7.1....super close to needing a transfusion.  I declined it at this time, hoping the EPO and venofer will do the trick.  Being this anemia makes it feel like my muscles don't respond when I ask them to....it's like walking through honey sometimes.  And the recovery is twice as long....my body was SO sore from yoga last week that I had to take 3 days off.  I did tiny amounts of stretching on those off days, but WOW, this is going to take forever to get back into shape. But I'll get there, dammit.  I try not to mentally abuse myself when I don't do it every day because, if there's one thing I've got, it's time.

In the meantime, Izzy's sick.  This kid has NEVER been this sick for this long.  She's missed 2 days of school already, and will miss tomorrow as well.  I took her to urgent  care, fearing the flu, but luckily it's just a viral infection that needs to run it's course.  I guess it's times like these that I'm thankful I'm not working.

 While we were sitting in urgent care, I could feel my bronchiectasis acting up in my lungs....the mucous was growing and my oxygen sats were decreasing rapidly.  I kept thinking that I was going to end up in the hospital myself in a day or two, so I came home and did a breathing treatment with the nebulizer and compression vest.  Those things work wonders, because I was actually better this morning and much less fearful of another hospital stay.

I seem to be having some serious issues walking up/down the stairs lately.  I think I've fallen 3 times in as many weeks, and I can't tell you why.  Today was the scariest, by far.  I slid down 3 or 4 of them on the area that had the vein harvested and broke open the incision at the top.  This was literally right after dialysis, and maybe there was some shock involved, but I was certain that I had royally screwed up something.  I was on my way to my ENT appointment at the U of MN, so I had to cancel that (which sucks because this specialist worked me in to deal with the never ending tickle I have in the back of my throat and she might think I'm a complete flake of a patient and not see me again :(.  I called the vascular center because I think they should've brought me in to check it out, but they told me to go to urgent care and I was like, "Well, if they don't think it's that big of a deal, then neither will I".  That may not have been my smartest move, but so far so good.   This is the underside of mt arm, where they harvested the vein for my fistula. No serious bruising, and the would closed up again on it's own.  It's sore and bruised inside, but I think it'll be okay.  If it was my fistula, this would've been a totally different tale, but thankfully it wasn't.

My toes, on the other hand, took beating.  You can see, although not the greatest, that there's some pretty good bruising starting to form on my pinkie and the toe next to my big toe.  It hurts like hell....even putting a blanket on it is painful, so it looks like I'll be keeping that foot out of the covers tonight.  I just can't understand why I'm so clumsy on the stairs lately....I mean it's honestly strange....

I've decided to wait to try nocturnal hemo until after I get back from vacation.  I decided that I don't want to train on it, and then end up reverting back to daytime hemo while on vacation because I'm nervous anyway, or try nocturnal on vacation and have it go badly so as to affect our vacation, so the plan is to start right away on it when I'm back.  Yay....just in time for summer!!!

Life without my Murphy has been sad.  It's so quiet in this house.  We had him cremated, and I'll be honest in saying that I felt so much better when he was returned to us for forever in his beautiful little box.  I can say good morning to him every day, just like before.  I don't give a crap how weird that sounds....it's good to have him home again.  I am seriously thinking about fostering now.  I have thought about it in the past, but it didn't make sense with two dogs and a cat already.  But now I think I have the time and we have the space.  I want to wait until it's a bit warm out, because I don't want all of the walking duties to fall onto Joacim.  He's not totally into this fostering thing yet because I'm sure he worries that he'll end up doing all the work.  I can't blame him :) But our neighbors just started fostering this week, and she's the cutest pup ever!  I'm lucky to be able to help out with potty breaks, where I get my share of puppy breath and sharp puppy teeth.  It just might be the thing I need to push me back over that edge.....

Have I mentioned that I'm still going bat-shit crazy in this house? Have I mentioned that we've gotten about a foot of snow since the last time I posted?  I mean, it's super-pretty, and awesome having all of this snow, but with Izzy being sick and me possibly with broken toes, I'm not sure we're going to be able to take advantage of it.  I had hoped to try out snowshoeing or cross country skiing this weekend...guess we'll have to wait and see!

Thursday, February 8, 2018

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!

AV Fistula surgery follow-up and other odds and ends (contains some graphic images...you've been warned).

I've got a whole bunch of emotions that I'm dealing with right now, and I don't even know where to begin.  Whenever this happens, I turn to the photostream on my phone to help me get started (which explains why this post is so picture-heavy :)  I figure that (maybe) if I start writing things about these photos, then all of the other emotions may come to the surface and slowly seen out.  This blog is my therapy and I'm in desperate need of some.

This is my friend Mindy.  We "met" a fear years ago on a blog of someone we both followed.  I don't even remember the exact way it happened, but we discovered we were both in Minnesota, and our friendship grew slowly from there.  We've had lunch a few times here in the cities when she and her family come down (they're in the northern part of Minnesota), but this time she offered to come and help out with my fistula surgery (since I was so hammered from my nephrectomy), and I took her up on it.  It's never easy for me, or us as a family, to accept help, but it's something we know we need to work on.

Mindy is the kindest soul...what I love about her is how positive she is and how openly appreciative she is of her friends!  She's a transplant here too (from Vegas), and I've often marveled at how easy it is for her to make friends, which is something I've struggled with here.  Anyway, it was really great having here here...Joacim and Izzy loved her as well, and we're all looking forward to seeing her again soon!

These are pictures from surgery day.  The original plan was for general anesthesia, but I had had one terrible experience with that prior, and that was enough for the anesthesiologist to think differently, and I ended up with a nerve block.  This is the doctor using an ultrasound machine to find the nerve in my neck/shoulder to block the full length of my arm.

I'll admit that I was REALLY nervous about this surgery.  Partly because I wasn't even healed from the one I'd had 8 days prior, but also because the last time I had a surgery on my fistula was incredibly painful....I mean the WORST.  But having this nerve block changed everything.  I woke up happy and smiling and requesting a popsicle :)

And I was amazed that I could use it the next day. I had started creating new buttonholes the week before in preparation for the surgery, and they worked fine the day after surgery, even though one of them was SO close to the incision.

The surgery scars initially after are pretty ugly.  This was the first time that I'd had actual stitches in all of the surgeries I've had in the last 2 years...usually it was just stern-strips keeping everything closed.

This is the vein they took to repair the actual fistula.

Random addition to this post, but we finally had a real snow day....around 9" of beautiful snow!!!

Ahhh....and here are my buddies....I love these pups....

Our neighbor brought over her old snowboard for Izzy to try....she's quite a natural athlete, but the gymnastics training she's been doing for the last 5 years has been superd-helpful for her balance.


So the other day while dialyzing, I noticed that the venous (return) needle was starting to "back out" from the pressure.  I didn't have it secured properly and needed more tape, so I reached over my arm to get the roll of tape, and the whole needle came out while the machine was running.  I spent a good 4-5 seconds panicking and then just starting closing any clamp that was close.  That wasn't working so I just stopped the machine entirely.  Holy shit, that was a lot of blood.  The venous site was spewing blood, as was the dislodged needle....all over the chair, heating pad, my face and hair.  There aren't a lot of things grosser than being covered in your own warm, sticky blood.  Ahhh...a day in the life of a dialysis patient.  Luckily I usually only make these mistakes once ;)

Post-op from nephrectomy

It's been a long time since I posted here....I'm not going to even try to catch everyone up, so let's just dive in, ok?

Anyone who ever tries to minimize the "majorness" of a bilateral (both sides) nephrectomy (kidney removal) can fuck the hell off.  Never listen to a surgeon, who seems to equate any surgery to a dental cleaning.  I vaguely remember hearing one of the nurses is post-op mention that this is considered a same-day surgery, meaning most people leave the same day (and that she thought I was being dramatic when describing my pain).  Fuck off whoever the hell you were.  Fuck.  Off.

Since I've been away from a hospital for a whole 2 months and away from any kind of a surgery for a year (except sinus surgery back in August), I had blocked out a lot of the memories of how bad physical pain feels.  Not being able to put your socks on because you can't engage your stomach muscles....an abdomen so full of gas that any position feels like you're being stabbed with a thousand tiny knives....vascillating between sleeping and being awake.....feeling nausea and begging all forces in the universe to stop it because you fear your guts may fall out if you vomit.  Yep, all of it came rushing back to me, and it's not over yet because I will probably have another surgery later this week or early next week.  I'll get to that in a second...

So I'm home now, which is good, but it isn't restful.  Joacim and Izzy aren't reading my mind every second wondering how they can help me, and when you actually have to verbalize to another person everything you want, you sound ridiculous and demanding.  Which is why I usually end up doing things myself.  I get mad because they don't know what I want, and sometimes I get resistance when I ask for something.  I'm sure it's annoying to them to have to wait on me, but I don't really get it from them like I wish I could.  After this particular surgery, it's really kind of painful to talk, especially to yell to another room, so I just do it myself.  It's a particularly shitty part of all of this, at least in this house.

And I'm sure some people might be reading this and wondering "why didn't she ask me for help?"... because I don't want to ask.  It's embarrassing.  I sound needy and spoiled.  I just wish for someone to do it without me having to ask.  Joacim still has to go to work...he lost 3 days last week because of my surgery and the snow....he has responsibilities too.  And Izzy....poor little Izzy....I mean, she's only 9 but I throw a lot at her, and she doesn't deserve it.

Speaking of Izzy.....I'm a little worried that this last week has had a significant negative effect on her.  Because of a series of things, Izzy ended up seeing me right after surgery but before I had really come out of my anesthesia.  They took me straight from post-op to dialysis because my potassium was super-high (I'm probably lucky that they did the surgery at all), but I was pretty adamant about not wanting dialysis I recall.  I had done it at home the 4 days prior, and I had JUST come out of surgery and was groggy and in an excruciating amount of pain....I didn't have my blunt needles with me and I couldn't have cannulated myself anyway due to the pain, and I think I was delirious.  I remember seeing Joacim, with a smile on his face because he came back to the hospital after going home to get Izzy while I was in surgery and has no idea of my mental state, and I remember Izzy trying to tell me that Simone Biles sent her a letter back from a class project and she was so happy.  But I was barely listening...I was moaning and crying that I don't WANT to do dialysis....I could see the look on her face that she was scared of what she was seeing, and I couldn't communicate that to Joacim.  And I knew all of this in my head, but it was too late and he was too late getting her out of there and it was all just awful.

He took her home, but she cried on the way home, and then a little more at home.  Ugh.  And then I almost threw up on Friday (and she HATES it when that happens), but even worse today was that she was with me when I drove to see my doctor (yes, driving to see a doctor still has to happen) and I threw up while driving and she was freaking the hell out.  I mean, who wouldn't?  Who likes to be around someone that's vomiting?  But especially when it's your mom.  Your mom who is literally  driving to the dialysis clinic to meet her nephrologist after she just had her kidney's removed.  What can I do?  I don't even know why the hell I threw up....I felt fine.....it was weird.  Thank god I had an emesis bag handy or it would've been REALLY awful instead of just awful.

Everyone tells me how much compassion she'll have when she's older.  I think people say that to make me feel better, and that's fine, but what do I do in the present?  How do I help her through this?  Am I supposed to just ignore her reactions because "she'll be compassionate when she's older??".  Fuck no.  THIS part of my whole illness is sucking so much.  She needs me, and there are times when I just physically and mentally can't be there.  This has always been the case, but now she's old enough to notice and understand that it's scary.

So, did the surgery work?  Well, who knows.  I don't actually think there's going to be a solid answer to that right now.  My BP is back up again, but not as high as it was before the surgery.  This could be due to the fact that I literally vomited right before they took it in the clinic today.  It could also be higher due to the amount of pain.  Whatever the case, I'm going to start taking one BP med tonight and see what happens over the next few days.  I have an escalation plan with my doctor if it doesn't go down or rises, so I guess I'll just keep my fingers crossed.

Note:  I DO have nausea meds, but understand that I'm not nauseous.  I didn't take any pain meds today (because I had to drive and because they cause constipation), and I wasn't feeling sick or nauseous.  The vomit comes on in under 10 seconds and then it just....happens.

There were no guarantees that this surgery would work, and there aren't any other options except more meds (many of these with debilitating side effects) if it doesn't.  I'm just going to put one foot in front of the other every day and not jump ahead to "what if" it all.  Hour by hour, day by day.

This is what my abdomen looks like 5 days post-op.  The incision above my belly button is where they took the kidneys out.  Yes, I'm still swollen and full of gas.  And yes, my belly is terribly hairy, but that's one of those nasty side effects that I was mentioning.  I've been taking minoxidil for my BP for the last 2 months, and it works well, but it has the side effect of hair growth.  It's also more widely known as Rogaine.

I mentioned "another" surgery earlier.  Home hemo is going well, but I've been having some issues with my access lately...my arterial pressures are high, unstable, and getting worse. I had a fistulagram a few weeks ago to try to widen it, but it didn't really work, so now a vascular surgeon is going to harvest another vein from my arm and use it to "patch" a section of my current fistula.

I had an ultrasound on it while I was in the hospital and the tech did a nice mark-up of it to help figure out where the surgeon would actually operate.  I needed to know this because I needed to understand where I could no longer cannulate due to the surgery, and I am now trying to develop another buttonhole higher up on my arm.  And I'm doing THAT in order to avoid having a chest catheter put in.  Dammit....I hate those things, and I'll do damn nearly anything in order to avoid them.  It's not hard to create another buttonhole, but the location of this one is right in my elbow and it hurts because, during treatment, I can feel the tip of the needle (using sharps) inside my vein with any arm movement, so all of the relative freedom I've had has gone away right now until it's established (switch back to blunts).  This means that I can't really do dialysis at home by myself for ow because I need someone with me the entire time to push buttons on the machine when I need them to (also partly because I have 7 fucking holes in my stomach and I can't get up from the chair to reach the machine while running).  Which means I'll go back to doing it in the evening when Joacim and Izzy are home, and that sucks for all of us.  I can't lift the dialysate bags right now anyway, so I need Joacim to do that for me the night before I run.  But if I'm stuck staying still during the run until I'm healed from this upcoming surgery, then I'm looking at at least 6 weeks, because that's how long it'll take to heal and establish ANOTHER buttonhole.  Ugh.

This is a top view of my fistula.  The long line is the actual fistula vein itself.  The horizontal hash marks are where the surgeon is going to patch.  You can see that one of my buttonholes is in this area, which is why I'm working on a new one in my elbow where you can see some work being done there.

This other mark shown here is the location of the vein that will be harvest and used to patch the fistula.

What I am finding now, on this other side of transplant, is to literally try to remain focused on the present.  It's sometimes overwhelmingly depressing to look out any further than that.  The only time I'm going against that is thinking about a real vacation...I mean longer than 2 nights.  We're thinking about taking Izzy to Disneyworld over spring break.  It seems like a place that would be great at accommodating my medical needs (doing dialysis in the hotel room with my machine) yet having a ton of things to do for Joacim and Izzy when I need to dialyze.  Those of you that really know me understand that this isn't ever a place I've wanted to go in the past...too overwhelming...too busy....too much.  But I think, considering I spend at least 15-18 hours a week dealing with dialysis, that it may be a good option to start learning how to vacation again.  If there's a day I don't feel well, then they can go swimming.  We'll stay on-site to avoid the time lost driving back and forth, and we'll keep our expectations of what to see small.  We'll get a meal plan so we don't have to deal with "what's for dinner".  I've been in touch with a few awesome friends who have done Disney several times, so I hope it's not too bad.  We aren't going to tell Izzy yet....hoping to make it a fantastic surprise for her.

Wednesday, January 17, 2018

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.

Sunday, May 14, 2017

Mother's Day Blues

Mother's Day, at least for me, never lives up to what I think it's supposed to be.

At this moment, in my current emotional and physical state, I should feel lucky for each and every Mother's Day I get to "celebrate".

I put celebrate in quotation marks because there's really no "celebration" here.  There's just Joacim and Izzy, and Joacim usually focuses on a present 3 days before the event, orders something last minute that doesn't arrive for the actual day, and is not necessarily something that I really even thought about wanting.  Then they'll go to Target a couple of days before and each get a card. That sounds harsh, but truth hurts sometimes.

My little Izzy came through today...she had made a book of poems in school and they're really cute.  There seems to be a strong theme about cooking and cookies throughout all of them.  I'm thankful that the theme wasn't sick and dying...glad she's not focusing on those aspects of life at home.

But dammit....it's the partner's job (in this case, Joacim) to teach Izzy why we celebrate Mother's Day, not just at the start of the day, but ALL DAY. It's a day to make Mom's feel special for everything they do.  For me on Mother's Day, I just want acknowledgement of these things.  I want to know that THEY know what I do that makes me invaluable to this family.  I'm really feeling the need to feel valued at home because I'm not contributing anywhere else, and if no one here values me, then sometimes it's hard to figure out the point of all of this.

I feel like I work on that with Izzy when Father's Day comes around.  I haven't asked Joacim if he feels I've been successful though, so that's something I should do.

Joacim's birthday is Tuesday and I asked him if he wanted a special dinner and he's like "nah"...


For PETE'S SAKE....we should ALWAYS be celebrating birthdays (all of ours) with fanfare!!!  The birthday person should be celebrated!!!  I want Izzy's birthday to be the best day of the year for her, every year....that's what I strive for.  I'll never be the adult who says, "No, I don't need any presents....."   TOTAL LIES!  I LOVE ALL THE PRESENTS!!!!! :)

I'm feeling a lot on edge today because my blood pressures have been at stroke level several times this weekend.  I've need to take a hard look at my daily sodium intake to see how much I'm really consuming daily and see where I go from there.  Hopefully I can get in early again tomorrow for a UF run before dialysis to pull off the extra fluid that I think is due, in part, to a new blood pressure medicine.  It's all kind of a nightmare and I'm scared to go to sleep with my BP so high (203/117 at last check at 9:21pm) so I'm going to keep taking clonidine until it goes down enough to sleep.  Wish me luck.

Thursday, May 11, 2017

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.

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.

kinda of a shitshow day

It feels like everything took a turn for the worse, or maybe not, but at the end of the day, I had very few answers to things that I had pla...