Friday, August 7, 2020

Transplant / Living Donor Info for me (edited)

I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info.  I've got to take advantage of every single person's interest because YOU JUST NEVER KNOW, right?

If you are reading this and are curious about the living donor process, a great website to investigate is  

I'm looking for an O+ kidney.  If you already know that you're not O+, don't worry.  If you're willing you can sign up for the kidney paired exchange program.  You can learn more about that here.

Okay, so here's the info for my transplant center.  I'm currently listed at the University of Minnesota.  Here is the contact info for the Living Donor Team:

When you call, you need to specify that you're interested in being tested as a possible living donor for Jennifer Trunk.  Please know that I am never notified of who is being's completely confidential.  I wouldn't know that anyone got tested until someone actually came back as a match.  The living donor and recipient teams are completely separate as well.  I say this because I imagine it's an emotional thing to go through the process....maybe you want to try but are worried that you wouldn't be able to donate for whatever reason.  And maybe you find out you are a match, but something happens and you change your mind.  Please understand that I'll never know unless you're a match and agree to move forward.  Also, all of the costs are covered by my own insurance.

For me, this waiting can be discouraging.  I don't get a call saying someone is being tested (at least not that I remember), so I'm always wondering what's happening.  Sometimes it can feel like I'll never find a donor.  

I have a LOT of antibodies built up in my immune system....this is from pregnancy, my first transplant, and 4 blood transfusions after it due to severe anemia.  What I'm saying is that I'm looking for a needle in a haystack, but maybe that's you....

Thank you for taking the time to read, and please share across your own social media sites :)

Thursday, August 6, 2020

Back from a 2-year absence....

This is the first time I've logged onto my blog in 2 years!  I only thought it had been a year since I last posted, but I was way off on that I guess.

So what made me come back?  There are a few reasons:

  • First and foremost,  I need another transplant and I hope this blog ends up being seen by someone willing to donate their kidney to me, because a living donor is still my best option.  I've been on dialysis for 3 1/2 years now, and while I'm doing well on it, I would still rather live a life that's not dependent on a machine.
  • Last week I participated in the National Kidney Foundation's Big Ask Big Give webinar and it was motivating.  This is a webinar for people looking for a living donor kidney as well as their friends/family.  It was a shortened version (I think) but still great.The purpose of it is to help us better tell our stories in the hopes of finding a living donor.  There's a lot of info that I need to go through, and actually go through the process of working through all of the worksheets, but it's the first time I've been motivated to do anything in regards to the search for a living kidney donor.
  • Lynnda ;)  Lynnda is a woman I met several years ago via the interwebs.  Her husband, Tony, has the same disease as I do, and we went through our transplants around the same time, and had similar experiences (she somehow stumbled across this blog).  We've become friends over the years, and occasionally she asks me when I'm going to re-start my blog.  She finds value in my perspective, and she's never given up on me.  It'll be nice to finally tell her that I re-started it ;)
  • I think writing down my thoughts/feelings is cathartic for me.  I've noticed my anxiety level is much higher now than when I was regularly blogging here, but my health is actually more stable now than it's ever been.  Maybe getting the words out of my head and into the world will make me feel better.
Last night I had a terrible run.  Well, I didn't actually run at all.  I think I have a narrow spot in my fistula, and the needle that "pulls" blood from my body to the dialysis machine feels like it's sucking a big vacuum, and it doesn't like that at all...the machine just can't run, so I had to abort the whole thing.  When I physically palpate my fistula, I can feel a narrow spot right where the tip of the arterial needle hits.  I called the vascular surgery center today and they initially said that they couldn't get time in until next Tuesday.  I'll try to dialyze again tonight, but my concern is that if it doesn't work, then that will have been 4 days since my last good run.  That means 4 days worth of fluid and electrolyte build-up, and I've already been having problems with high potassium levels (and those are no joke....they can stop your heart instantly, without warning). It's been 3 days and I already feel the effects of no dialysis.  Luckily my dialysis nurse was able to explain all of this to them and they got me in for a fistulagram tomorrow at 11:45am.  A fistulagram is where they go into the fistula itself and inject a dye to see if/where the narrowing is, and if there is one, then they use a balloon angioplasty to try to widen it.  It's a pretty common procedure (one I've had several times), but this is the first time I've been in a hospital since COVID, and it's a lot nerve-wracking.  It should all go smoothly, fingers crossed!!!

Thursday, August 16, 2018

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 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 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.  

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'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 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'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 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'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 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 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 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'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 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 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's like walking through honey sometimes.  And the recovery is twice as 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'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, 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'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'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 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'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 ;)

Transplant / Living Donor Info for me (edited)

I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info.  I&#...