Where are we 11 days post-transplant

 It's hard to believe it's already been 11 days since I had my kidney transplant.  I'm feeling better every day, but there are a couple of things that are holding me back.

I still have a drain at the top of my incision that is highly irritating. This was put in because the sac surrounding the kidney was damaged, so my surgeon removed most of it before implanting it in me (but it will grow back eventually). This sometimes causes the kidney to be a bit leaky, so they put a drain in to make sure fluid wasn't collecting around the kidney, which would put pressure on it and possibly affect it's functioning. 

picture of drain and incision

It has been draining a significant amount of fluid since then, so there was some concern that there was fluid around the kidney. I had excess lymphocele fluid collecting around my previous transplant, and ended up having a laprascopic surgery to put a drain window in my peritoneal wall ,  I was able to meet with my surgeon this past Friday (May 23) and he scheduled an ultrasound. Thankfully, the kidney looked great, and there were no fluid pockets, so essentially this meant that the drain could be removed, but it was late afternoon Friday, before Memorial Day weekend, so I'd have to keep it at least until Tuesday. The fluid that's leaking from the kidney into this drain will essentially be reabsorbed by my body.

The problem right now is that I don't have any follow-up appointment with the surgeon, and none scheduled with my transplant nephrologist. This has been a little bit frustrating, because I'd like to see my entire week of appointments laid out so I can feel like there's some measure of a plan. That's not quite happening, but I met with a social worker today who suggested I reach out to my nurse coordinator (who I have technically not met yet), and they can help reach out to the team to move things along.  It is my very desperate wish to be rid of this drain by the end of today.

This thing leaks...a lot. And the fluid gets on my clothes, and it's gross and smells, so we're doing more laundry than I thought we would. They gave me supplies to change the dressing, but I leak through it within an hour of putting it on, and then it leaks through to my clothes. I was getting so frustrated about this over the weekend that I came up with what I thought was an ingenious idea: maxi pads. That's right, my friends, I'm using maxi pads strategically taped around the area to absorb the fluid while keeping me dry. This worked well the first day, and I thought I was so smart, but it's either leaking more than it was, or we are't placing the pads the same way. Anyway, here's a pic of our handiwork:

the sticky backs and wings are annoying

Here's a video of Joacim changing my maxi pad bandage.

I'm still dealing with higher than desired potassium and phosphorus levels. I'm terrible about taking phosphorus binders...they're supposed to be taken with meals, but I'm not really eating meals at this point...too full. I picked up a potassium binder medication yesterday, so pending today's labs I'll take that to try to bind the excess potassium in my digestive track.

Speaking of digestive track, I've FINALLY started having bowel movements. 10 days is a ridiculously long time to go without one, and I've been feeling so incredibly full all the time that it's negatively affecting my eating, and causing a great deal of heartburn. My abdomen is quite distended still, so I'm hoping that this will help soothe everything and slowly start to shrink my belly and let me be hungry.

One of the immunosuppressive medications that I take is called Tacrolimus. I currently take it 2x/day and have trough levels determined pretty frequently. It's important that I have a trough of 8-12, and I currently achieve that taking 5mg in the am and pm. The issue is that this medication causes me TERRIBLE tremors, and I feel that they're starting already, My movements are shaky, and sometimes jerky and uncontrolled. I feel quite shaky inside and unsettled...I don't know how else to describe this feeling but it's terrible. My arms are getting so tired when holding things up, like a book, from the tremors. I spoke to my transplant neph about this and that this affected me quite negatively the last time. There's a long-acting version of this that doesn't cause quite the same intensity of side effects, but they want to make sure they've got my dosage where they want it before switching me.

I mean, this med makes it hard to put on makeup, forget about even writing anything legibly (it's kind of a jerky scribble when I try). I do my own gel nails now too, and take a lot of pride in that, but I don't now how I'll do it with this tremor. I'd also like my body to feel normal inside. I'm not anxious, but that's what it feels like in my chest.

On a good note, all of my water retention is gone. I actually stopped the diuretics I was taking because my toes and legs were cramping. I was keeping track of how many times I was urinating throughout the day..it was every 2 hours at first, and then every hour. On Thursday I lost track after 18 pees.  I still pee every few hours, but I'm at least able to get some sleep in between them. I have my ankles back, mu knees, my collarbone. My abdomen is still quite swollen, but I expect that'll take more time to heal. I think that, the way my scars are from both transplants, that I'll never have a flat stomach again, no matter how much I exercise. I'm still vain enough to care about this.

But all in all, things look great. My numbers are slowly coming down (good thing) and we currently don't see a recurrence of the FSGS. I almost hate typing that as I fear jinxing it, but I should also celebrate the good while it's good, right? Not good, no....freaking amazing!!!!

Joacim and I are still doing quite well living in in this hotel room together. We were able to take a couple of road trips this weekend to get out of our room. I used Claude.ai to come up with a plan to road trip around the "drift less area" and that's what we followed. Saturday was a drive to LaCrosse, where we walked around and ate a few things. Joacim can't pass up a German sausage, so I knew we'd be going to LaCrossse bierhaus ;). We also hit Pearl St. ice cream, which was AMAZING. I had butter pecan and J had blueberry cheesecake.

a chicken schnitzel instead of sausage

I look absolutely possessed in this photo

But we ended up leaving earlier than planned due to my drain line leaking through my clothes. I was also quite tired that day, so we are home, and I took at 2 hour nap.

On Saturday we went to Lanesboro, which is known for pleasure biking. What a cute little town! Joacim had more ice cream and I had a latte. There was a cool vibey store next to the ice cream where Joacim surprised me by buying me a new Labradorite ring. I LOVE rings....he also surprised me with one when I got to our hotel the first night. It was so sweet of him and I love them!

gold/silver ring

labradorite ring

On Sunday we just hung around Rochester, going to the grocery story, bookstore, Scheel's, return stuff at Target. And lots of rest.

We're spending our evenings watching either the Timberwolves or the Pacers in their respective conference finals. It's a nice, easy life right now. It's like living in a little bubble...sometimes re-entry into real life feels kind of hard because there's so much more to do/think about. I'll enjoy this time while I have it.

I GOT A KIDNEY!!! (part 2)

Warning: there are some photos that might make you squeamish....I'm sorry if it does but want you all to see what this is like 

Okay, where were we? Yes, slumber and surgery.

My surgery started at 3:00pm, and Joacim made it to Mayo at 3:20pm, so I didn't get to see him before it. I wonder what that was like for him...you know, having a 4 hour drive from up north to contemplate what was happening and start planning for how we'll handle everything logistically. Then going home to pack who knows what for a stay here for who knows how long, get Izzy and Tucker settled and THEN driving to Mayo and finding a hotel for us and my parents....it just must've been so much.

And all on his birthday. That's right, I got a new kidney for Joacim's birthday!!!! He won't ever forget the date of this transplant.

Anyway, surgery went well. The kidney was put on the left side this time because Adam's kidney is still in my body on the right side...they don't remove non-functioning kidneys unless they're causing problems, and his is not. Physiologically this is a more difficult location due to anatomy (here's what Claude.AI gave as an explanation for this:

The left-side placement for your second kidney transplant is indeed more challenging for several anatomical and surgical reasons:

Vascular anatomy differences: The left iliac vessels (where transplant kidneys are typically connected) have a different configuration than the right side. The left common iliac vein lies deeper and more medially positioned, making it harder to access and work with during surgery. The surgeon needs to work around more complex vessel branching patterns on the left side.

Previous surgical scarring: Since you already had surgery on the right side, placing the second kidney on the left means working in a completely new surgical field. However, the left retroperitoneal space (where the kidney sits) can be more technically demanding to access initially compared to the right side, which is typically the preferred side for first transplants.

Anatomical space constraints: The left iliac fossa has slightly different anatomical relationships with surrounding structures. The sigmoid colon and its mesentery can create more crowded conditions, requiring more careful dissection and potentially a larger incision to safely place the kidney and create the vascular connections.

Surgical approach complexity: The angle and depth required to access the left iliac vessels often necessitates a longer, more extensive incision. This allows the surgeon better visualization and working room for the more technically demanding vascular anastomoses (connections between blood vessels).

Ureter implantation: While not dramatically different, the path for connecting the new kidney's ureter to your bladder may require slight modifications in surgical technique when working from the left side.

The larger scar and longer operative time reflect the additional technical complexity, but left-side kidney transplants are still very successful. Your surgical team chose this approach because it was the safest option for your specific situation.

By 7:18pm, Joacim had posted in a group text the following:

Jenn is in recovery. They did an ultrasound and everything looks great. BP is a little low but Doc isn’t worried. She might go to the ECU for monitoring. I should be able to see her in a couple of hours.

I hardly remember being in recovery...the only thing I remember were multiple people telling me to breathe deep. I tend to be hard to wake up after a general anesthesia, and I breathe so slow that my heart rate drops too low, so they try everyone to wake me up but all I want to do is sleep. I didn't feel any pain at this point as I was still pretty knocked out, but I was in recovery for a little longer than usual (I think) because of my low blood pressure. They were trying to decide if I should go back to my original room under General Care, of if I should go to the ICU for closer monitoring. They eventually decided ICU because of my BP, and I spent 3 nights there monitoring me, giving me infusions for transplant, giving me meds to raise my blood pressure, pumping me full of prednisone and antibiotics. It's all pretty standard stuff, but I'm glad I was there. It's a very low ratio of nurses to patients and I needed all the care and help I could get. 

My first night there was brutal though. My bed was in the middle of the room, right under a vent that blew ALL NIGHT LONG, and we couldn't get the temperature to stay where I wanted it, so it felt like cool air. I eventually got the chills and those bone-deep shudders. It was painful being that tense, and I felt like I was strangling in blankets. I even tried to cover my head, which helped but wasn't very practical. I hate breezes blowing on me in the hospital. I had great nurses, and the food was pretty decent. My nurse eventually moved my bed closer to the door and wall in order to avoid the breeze which was a lifesaver!

I sat up the day after surgery 2 times in a chair. I think I had dialysis again this day to help with my electrolyte balance. By the 3rd day I was started walking, at first assisted with a walker and a nurse associate (I know that's not the name for them, but I don't know what to call them).  It's pretty painful at this point, and I can't stand up straight at all...I feel like I have absolutely no deep core muscles, and the skin around the incision feels so tight.They told me about a Methodist Mile competition in that if you walk a mile while in the hospital you could get a free t-shirt, and I was determined to get it. I was moved from ICU to General care the afternoon of Day 3 and walked assisted by pushing a wheelchair all the way over there. Day 4 had no dialysis or anything, so I watched a lot of cringey TV shows (think Charmed or Bones) and was happy. Day 5 came, and I finished my Methodist Mile and got my Foley catheter removed (bladder), did more labs (this was a multiple-time per day occurrence, and was discharged to go to the hotel

Methodist Mile t-shirt

I got fairly decent sleep throughout this time (except that first night). Most of the people coming in started around 5:30-6:00am, with my nurse coming in to give pain meds and check my urine output and incision drain output, and then labs, and then nurse again to give Immunosuppressant meds, and then General Care rounds, and then Transplant rounds, and then more nurses and meds, and sometimes hanging a bag of lasix to help my kidney remove some of the extra weight I was carrying, and then remind me or order meals, and then someone to bring them in. An ever rotating cast of care providers.

To give you an idea of how much weight, my "dry weight" the day before my transplant was 69kg. This is a term used to estimate your "true" weight when you've pulled off all the "extra" fluid. After surgery, I think I was up to 77kg. If you need a conversion, that's 151.8lbs to 169lbs. I felt so full....it was so hard to breathe, but I asked for one of those breathing things you see that help you train you to draw deep breaths again because I didn't want to get pneumonia. I was given fluids during surgery, and told that my body was in shock, and my internal organs were also, and they were holding on to a lot of fluid, so it was going to take some time for it to come down. I'm down to 73.4kg (161.5lbs), so the kidney is perking up. We estimate I'm making somewhere along the lines of 2.5L of urine right now (based off the frequency that I have to go and the amount I go each time, which I'm estimating to be 250ml). It's going to take some time for my tiny little bladder to stretch and expand to that of a normal person's, and it's good to do this slower so as not to risk that sutures that are there from connecting the donor kidney's ureter to my bladder. At some point during my hospital stay I looked at my belly button and freaked out because it was essentially "missing" due to the swelling. At first I was swollen everywhere....eyelids to toes. But each day I saw a little improvement, starting from the top and moving down, and so I just stayed patient with everything. 

eyelid swelling right after surgery

That's what was so different about this time. My first transplant was full of emotion (mostly anxiety), trying to absorb everything and all the numbers. But this time I was just....chill. Like not dead inside but not anxious. I keep my hope under wraps because it's too hard, but I'll say I'm better off at this point now than I was the last time, both mentally and physically.

So, Joacim and I are staying in a Residence Inn for at least the 2 weeks post hospital discharge. I usually have labs in the morning, and various other appointments during the day. I meet with the transplant nephrology team most frequently but there are also visits with a social worker, dietitian and pharmacist. It's not terribly busy, and there's lots of down time, which is nice. Joacim can get some work done and calls made, and I can rest and keep my feet up to help the swelling in my legs. I left the hospital with an incision drain that's stitched to my abdomen inside and out. I was having some leakage at the site where the drain line comes out, so they put a urostomy bag around it to contain that leakage too. I have to empty the little bladder for it fairly frequently, as I'm draining about 450ml of fluid from the area around my new kidney per day, and write down the times and amounts. So now I carry a little plastic measuring cup around in my purse and a notebook everywhere so I can do that. Also trying to get my head around my meds. Some have to be taken at exact times so trying to stay on top of that too.

too many meds

We've got a nice room...it's a newer hotel and they have breakfast available so it was an easy choice. It's like a studio with a bed, sofa and nearly full kitchen, so we're set. Sometimes we go out to eat, and sometimes we just hang out here and eat groceries we've bought. The last 2 nights were spent watching the NBS conference finals. We had AMAZING food at a placed called First Meeting Noodles. Think hand-pull noodles stir fried or in soup. I ordered pork wontons in chili sauce and Mongolian Beef Friend Noodle, and they were AMAZING. The chili in the wontons set off like a volcano the heartburn I've been dealing with. Even the hot green tea was irritating. Coffee too. Anything temperature or spicy hot wrecks me. I had heartburn the last time due to prednisone, but it's 10 times worse right now. All of my abdominal swelling is aggravating the reflux that I have, so I eat very bland foods, and very small amounts. And drink a lot of water.

My bland snacks

Water is my best friend!

We were done with appointments today by 11, so we've been back at the hotel. I'm resting in bed, online shopping, keeping up with my email, reading ALL the newsletters I subscribe to, and writing these posts. Joacim's gotten some work done, attending a few calls, and is now working out in the hotel gym. He still has his annual summer solstice mountain bike race in Canada in June that he's trying to stay in shape for it. Being here can make that so challenging, and it's easy to lull into lazy, but I'm proud of him.

my current setup

He's been a great caregiver so far, attending to all of my needs. We haven't argued about anything, and he's been kind and patient. Honestly, just perfect.

I'll have labs again tomorrow, and there was some talk about doing an ultrasound around the kidney due to some of the swelling and pain that's happening around there, so we'll see. I've got a gnarly scar that goes from my left hip all the way across my pubic bone (probably 6 or 7 inches??), and this drain line sticking out of my abdomen, and some of the worst bruising I've ever seen. I have a bruise that covers the entire front part of a bikini...like DEEP purple, extending down the front of my thighs. The bruising doesn't hurt, thankfully.

this is what I'm dealing with

You can get an idea of the bruising too. It's solid dark purple under my underwear

Okay, I think that about wraps things up and brings us current. I probably won't post on here daily, but every few days as things develop. Thank you all for caring and for reading and commenting...looks like we've got a lot of people rooting for us!

I GOT A KIDNEY! (part 1)

I can't even believe it, but I had a kidney match and got a transplant Friday, May 17th. I'm so out of practice writing here that I'm not even sure where to start.

Catch-up since last post in 2020

Not much other than dialysis. That's a good thing....everything was pretty stable, health-wise. We traveled. I really got into exercise (lifting weights, pilates and hot yoga) during COVID and it's continued up until Thursday. But I was having a period of being really tired of dialysis. Some blood pressure issues and unexplained weight gain were really getting to me. I was perimenopausal too, which complicated these things.

Thursday, May 16 & Friday May 17

Joacim had left for a fishing trip early Thursday morning that was planned to go through Sunday afternoon. He'd then come home, probably do a bunch of laundry, and was then supposed to be off to Sweden on Monday.

I went to hot yoga in the morning at 9:30am, and then did a leg workout after that, so I was pretty sore when I got home. I decided to take a hot bath to relax and soothe my body, and then my phone rang and it was a 507 area code. I answered it, and the surgeon on the other end of the line said that they think they have a kidney for me and did I want it. I only remembering answering yes...too stunned to think of any questions to ask. Of course I was also thinking "how is Joacim going to get home? He drove up with one o the other guys and was still on his way there. The surgeon said that donor was deceased, and that the planned surgery would be 10:00pm. If they called me after that, the kidney was mine, and if they didn't call well....it wasn't.

I dread this. I'd like call either way, but that's not how it works. Anyway, I called Joacim to let him know about the call, but we decided it didn't make sense to do anything different at that point because what if they didn't call? Plus, I was scared to jinx it.

I then went down to my good friend Julia's house and told her, and she was as excited for me as I was. We talk about it a lot because I complain about the dialysis struggles and the impact on my every day life. I also asked her if maybe she could drive down there with me if they called so she could drive my car back home. Then I called my Dad. and then I saw my friend Jill while walking our dog, Tucker, and told her. She also lives nearby and between her and Julia knew that they could help out Izzy too. And then I texted my college roommates Andrea, Carrie and Holly. And, of course, I told my first kidney donor, Adam. He was so happy for me, and it felt really great.

When Izzy got home and I told her what was going on, and gave her the option of coming with me or staying home. We felt staying home was the right thing for her...she was having her bestie over the next day anyway, and had work both Saturday and Sunday (yes, she has a JOB now...and is DRIVING!!).

And that was it. I tried to stay busy all day. Did some gardening, watched some shows with Izzy when she got home..just chill. I don't know....I can't explain it (likely a trauma response) but I didn't feel any emotions about it all day. It was in the back of my head, but not consuming me. I've gotten one call before, 3 years prior, and it gutted me when they didn't end up calling. I wasn't going to do that again, so I just went on and if nothing was happening. I went to bed around 10:00pm, scrolled TikTok for an embarrassingly long time, and finally, when it was 1:00am and no call, I assumed it was over. I took my sleeping/anxiety meds and went to sleep.

And then 42 minutes later the surgeon called again and gave me the miraculous new. I had a kidney. "How long would it be before I could make it down there." I said 4:00am and he said "we'll plan on seeing you then". And then I called Julia to tell her so she could get ready to come with me. I woke up Izzy to let her know, and her hug and excitement for me I'l remember forever. And I called my dad. I started packing furiously (yes, I didn't even pack a single thing cause jinxing...). I wasn't even sure what I threw in there and if it made sense, but I had to pack for a week of being in the hospital and then the time after in the hotel, plus toiletries and things to do during all the downtime I'd have.

Julia arrived about 20 minutes later, I grabbed a couple of cheese sticks and a sleeve of crackers, and we  headed to Mayo. I started trying to get a hold of Joacim, but he was about 4 hours north, on Lake Winnie (for the locals), and without a vehicle. I texted, called and left messages, but the service is not great where they were staying, and I knew I had to wait until he woke up and read his text messages.

Julia and I got there around 4:00am. She came in with me to check in because I was worried that they'd say no if they saw I came there by myself, but they weren't so then she was able to leave and get home to get her girls ready for the school in the morning (on basically no sleep....sorry Julia :) And things went fast from there. I got to what was supposed to be my post-op room, had labs come in and draw a lot of tubes of blood. Then I had plasmapheresis in the room and a thymoglobulin infusion to reduce the risk of rejection. And THEN I had to get dialysis for 3 hours, partly because I would've dialyzed that night normally, and my potassium was a little high. And after dialysis I went to get a chest x-ray, and then we headed back up to our room and they were ready to take me to post-op. The surgery was scheduled for 3:00pm, and it was around 1:30pm at this point. I finally did get a hold of Joacim, and one the guys fishing up there was driving him back home (thank you Mike!!!), but he didn't make it to the hospital before my surgery. I had to get a pregnancy test (blood) because I didn't make urine and I was still getting my periods, even irregularly, so that added some extra wait time. 

But pretty quickly I was rolled to the OR. I'll never forget this...I see 2 surgeons in the corner of the room hovering over the donor kidney. I looked at it and it was white....like no blood in it at all. This kind of mentally prepared me for delayed functioning. I found out eventually that the kidney had been on ice for 19 hours prior to getting to me (I know, the math ain't mathin' but who cares?) It was so weird walking in there and having my hope for a new life in a container. We had to wait about 20-30 minutes in the OR on the pregnancy test, but as soon was we got the result I started drifting to sleep and the surgey started.

Okay, it's 10:00pm here.  I'm tired and have labs tomorrow at 6:50am, so I'm going to head off to bed. I'll cover the rest tomorrow in a part 2. Good night! 

(and I don't know why the photos are wonky...there aren't a lot of options in Blogger) but they are as follows:

1. pre-op activities

2. labs....so many vials

3. dialysis

4. a photo that I sent to my friend Holly during dialysis

5. me, still in disbelief in pre-op

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 https://transplantliving.org.  

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.  https://www.kidney.org/transplantation/livingdonors/incompatiblebloodtype

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 tested....it'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 :)

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!!!

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

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

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

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

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

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

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



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

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

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

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

Our car (and me taking a picture of it)

her car

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

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

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

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

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

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.

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...