4 weeks post AV fistula surgery update

It's been 4 weeks since I had the AV fistula surgery in my wrist, and things are actually going fairly well.  The first two weeks were ROUGH.  I didn't think it would hurt as much as it did, but I was woefully mistaken.

Of course, I need to catch up on the last 4 weeks, starting with surgery day.  I was really nervous for the surgery, as I had written about in the previous post, so I took a Xanax on the drive down (don't worry...Joacim drove me ;).  My surgery was at 9:30am which was nice because it didn't force us to leave at some ungodly hour and freak out about what we were going to do with Izzy before school.

This is the band that they put around my wrist when I checked in for surgery.  It's done to protect my arm from anyone mistakenly trying to put an IV in it or use it for a blood pressure cuff.  Ever since I had the initial ultrasound done to plan for the surgery, this arm has been off limits to any usage for blood pressure or blood draws in order to protect the veins.  It was good to get used to it prior to the surgery, because it's now a forever-thing since I have the fistula now.

After everything I've been through, one of the things I hate most is getting an IV.  I mean, GEEESH they hurt.  But I'm glad I had it this time because it meant SEDATION DRUGS, and I needed them.  I was fairly calm due to the Xanax during pre-op check-in, but once I was on the gurney and being wheeled down to the OR, all of the awful fears kicked in.  I went to the same OR that I had been in the last surgery (which I haven't written about yet, but it was an emergency surgery and it was scary as hell).  The hallway to the ORs is completely deserted of people yet filled with equipment.  The staff waiting in the room are always wonderful to me, and extraordinarily considerate of my fears.  I start to panic once I'm moved to the OR table....it's so narrow and hard and cold.  When they put the arm wings on to the table is when my fear REALLY kicks in and I ask to be put out.  Thankfully, they do it quickly (yay for IVs) and I don't remember anything else.

 This is what I saw when I woke up from surgery.  It didn't look nearly as bad as I had envisioned, but I was covered in a thick, sticky iodine surgical wash.

It went from my wrist of my right hand, all the way up my arm, into my armpit and across my back and chest.

And this stuff does not wash off.  It's supposed to wear off, which it does eventually, but every hair on my arm was trapped in it and pulling and it was generally awful.  Thankfully the aphaeresis nurses rescued me once again by giving me these cleaning packets specifically for the iodine wash.  It took a whole bunch of them, but I was able to get all of the iodine off by the 3rd day.

We were encouraged to get was a stethoscope after the surgery in order to check the bruit, which is the sound of blood flowing through the access.  I have this awesome audio clip that I took of my bruit using my iPhone (guess I could've saved money on the stethoscope had I known the iPhone microphone would pick up the sound), but it's too damn complicated tonight to be able to share that on this blog, so here's a link to a YouTube video of one to give you an idea of how it sounds.

This is what it looked like 2 days after surgery.  The bare spot in the middle of my arms is where the hair was violently ripped out when I removed the tape keeping the bandage on :)  The dotted line drawn on my arm by the surgeon shows the mapping of the vein that returns blood back to my body.

Here is a close-up picture (sorry if it grosses you out).  I don't think it looked all that bad.  The surgeon did an amazing job of closing it up evenly, and I'm thankful that they use stern-strips to hold the wound together instead of stitches or staples, as they don't create any additional scars.

DAYUM.  This surgery hurt.  A lot.  I denied a take-home prescription of oxycodone like I was some kind of warrior (I clearly must've still been under the influence of some drugs), and it was a big mistake.  I denied them because they COMPLETELY mess up my GI tract...like for weeks, and it's so difficult to get things back to "normal".  But I regretted it about 2 days in....I was in HELL.  It hurt to do anything....you're supposed to walk a lot post-surgery (to help keep things normal) but walking was painful because GRAVITY.  Ugh...I don't think I went anywhere the first 2 weeks without an ice pack.  I just sat a lot and iced a lot, and started to get REALLY nervous that this was how things were going to be.  I tell you...when I'm in THAT kind of pain for THAT length of time, my brain thinks some pretty terrible things.

I took this picture 2 weeks after the surgery.  The scar healed REALLY well, but I'll always remember how painful those stern-strips were when they fell off.  The area around the incision was extremely sensitive, and my long-sleeves kept rubbing against it, tugging on the hair on my arm, adding to the awful.  I was SO happy when that last strip finally fell off!  You can see the fistula best from this angle...it's the raised surface right above the stern-strip.

Honestly, I don't think anyone would really notice it at this point.  It hasn't really gotten much bigger yet, which means I probably need to do more hand exercises in the near future.  I'm at a point now where I have full use of the arm/hand again, but the wrist is still a little weaker than I'd like.

I had an ultrasound yesterday morning on the fistula..actually the ultrasound covered my hand to my collarbone, but they were focusing on how the fistula was developing.  So far, it's going fairly well, but as my history dictates, there are some things that are happening that are a bit rare.  In the above photo, you can see a slightly raised area on the right of my forearm (midway between the sleeve and wrist).  That particular area is where the problem is.  The flow is being directed down 3 separate branches down my arm, and that's reducing the overall flow rate, which is on the low side at 670 ml/min.  The plan is for me to come back in 4 more weeks for another ultrasound, and possibly a plan to have another procedure done to ligate one or more of the branches (ligate means to cut off blood flow) in order to "force" the blood to go a different direction.  This isn't a certainty, but seems the most likely course of action.  And the reason we're waiting 4 more weeks is because it takes 8 weeks in order for the vein wall to be thick enough to do anything with, so we wait.

The good news is that I've been cleared to start doing yoga again, and ride my bike...essentially all normal activities, which is what I was hoping for.  I've been going a little stir crazy in the house lately and I need to direct it somewhere.  It'll be tough to find the balance between working out and not sweating (due to chest catheter).  We've had a few rather warm days lately, and I've found it difficult to go for a walk without sweating because I am THAT out of shape, so I'm not sure how yoga is going to go, or bike riding for that matter.

I've noticed that my body isn't as able to handle the heat as it did before.  I sweat quicker, and feel light-headed so I need to be careful.  I am absolutely hating putting on sunscreen, because that means I have to shower every day.  And I hate showering due to the chest catheter.  So I find that I stay inside a lot because I don't want to deal with it, and that sucks when the entire state of Minnesota is outside once it gets nice enough :)  

I was freakishly skinny post-surgery, and having a very hard time getting my appetite back.  I got down to 58 kilos at one point (that's 127 pounds), and although it looked good on the scale, it felt awful in my body.  I was just so weak, and even yoga pants would slide right off.  That's just wrong, no matter how much I wish that number was my normal weight.  I'm back to where I should be, and even though I'm not necessarily comfortable with how it looks sometimes, it physically feels better.  Unless I'm retaining fluid, because it seems that I'm retaining it in my belly right now, and I dread the day that someone asks me if I'm pregnant.  I wonder how I'll laugh that one off and try not to make the unsuspecting offender feel awful.  

We're also going down to 1/week plasmapheresis treatments to see how my kidney handles it.  If we see that I'm retaining more fluid and my creatinine rises (it's currently at 1.9) then we'll go back to 2/week, so keep your fingers crossed that this works, because that puts me one step closer to my new normal.

I dread tomorrow....

Tomorrow, I'll be going to Mayo for a planned AV fistula surgery in my right wrist (hopefully).

I've been dreading this day since the middle of 2014 when I realized I'd need to be on dialysis.  It was the fear of a fistula that was probably the primary reason I chose to do peritoneal dialysis (among several other factors).  Go ahead, I dare you to Google AV Fistula and look at the images and not freak out a little.  They're mostly horrifying, and I just couldn't handle the thought of that in my body.

But things have changed now and it doesn't seem as though I have a plethora of choices.  Before I explain, please understand that my transplant is STILL working, and I AM NOT on dialysis at this time, and HAVEN'T been since the transplant.  I do, however, do plasmapheresis twice a week right now, and that requires a large access, which is why I still have a large access via my chest catheter that I've had since the middle of October, 2015.

The catheter itself is still functioning very well.  The staff at Mayo do an EXCELLENT job of taking care of it, and I do a good job of doing the same while at home, which includes a rather arduous pre-shower routine and a significant amount of saran wrap and tape.  This catheter hasn't bothered me so much in the winter because I've been able to keep it covered so no one can see it.  It doesn't bother me that people can see it, but what DOES bother me are the strange looks or the awkward, sometimes intrusive conversation with strangers that I have to have.  Most of the time I'm happy to engage in any conversation about the transplant, but there are times that I just don't want to, and there are enough of those to make me consider the fistula.

When someone sees this thing sticking out of my chest, they can't help but look.  Hell, I'd do the same thing if I were in the other person's shoe.  It's just that I don't want that to be the very first thing people see, and it usually is.  And I hate it.  It makes it IMPOSSIBLE for me to be anything other than a sick person in their eyes, and I'm just done with it.

That's not to say that people won't do the same thing with the fistula, which they will, but it's location won't make it the first thing that people see (hopefully).  I'm having it put in in my right wrist which is good for the convenience of it.  Having a dialysis access point that isn't easily accessed in every season isn't ideal, and having one in my upper arm in winter is dreadful, because I ALWAYS have to plan what I wear around it, and honestly, I don't want to have to do that.  Normal people don't have to do that, and I don't want to either.

In my wrist, it should be relatively easy to access no matter the season.  Another good thing about starting in my wrist is that once this fistula fails, then they can still try other locations on the arm further up, which is good because I'd like to avoid my left arm as long as possible since I'm left-handed.  And ANOTHER good thing about getting it now is that the nurses on the aphaeresis floor will be the first ones using it.  Plasmapheresis is run at a MUCH slower rate than dialysis (800 ml/min vs. 400 ml/min), so I'll get to sort of "ramp up" I guess.  Plus, the nurses on the floor are amazing, kind and gentle, and they'll do everything to get me comfortable with it.

But the MAIN reason I'm going forward and doing this now is because of Izzy.  I lost a lot of fun time with Izzy while I had my PD catheter and previous chest catheters because I couldn't get in the water (I did on vacation but that required herculean efforts sometimes).  Anyway, I don't want to rob Izzy or myself of another summer of pool time and the lake and whatever else.  I'm tired of missing out, and I'm tired of her paying the price.  

I guess I should try to explain what a fistula is.  According to Wikipedia, an AV fistula is an abnormal connection or passageway between an artery and a vein.  So I guess it's not quite accurate when I said I'm having my fistula put in; it's more accurate to say I'm having my fistula created tomorrow.

Image from:  Blausen.com staff. "Blausen gallery 2014". Wikiversity Journal of Medicine. DOI:10.15347/wjm/2014.010. ISSN 20018762. - Own work, CC BY 3.0, https://commons.wikimedia.org/w/index.php?curid=31339214

I worry about several things:

• the surgery itself (I have PTSD after the last surgery I had, which I haven't blogged yet as a lot of things have happened in the last 6 weeks and I've felt crappy through most of it and haven't felt like blogging)
• the way it will look - the point of the fistula is to create a high blood velocity so that I can adequately dialyze (normal velocity is 85-115 ml/min....a month after the surgery it'll be 700-1000 ml/min), which means BIG VEINS.
• I will be able to FEEL the blood flowing...it's called the "thrill" (which makes it sound so much better to some but makes my stomach churn).  There will never be another peaceful moment in my body, as I will always feel it
• I will be able to HEAR it - fuck, this just messes me up
• I'll "kill" it by accidentally putting a ponytail holder around my wrist like I've done a bajillion times before.  That action alone could cut off circulation enough that the fistula essentially collapses, which would require me to get another chest catheter while waiting for another fistula.
• that it won't work at all....sometimes fistula's don't mature (the process takes 1-2 months) but for some people it just doesn't work.  What if I'm one of those unlucky people???

This is what my right wrist looks while I'm sitting with my arms essentially parallel to the ground

And here's how it looks while down by my sides (horizontal to the ground)

Do you see how that being pops out?  And that's only at 85-110 ml/min!!  What the hell is it going to look like at 700-1000 ml/min?????  Fuck, I don't want to find out, but I guess I will soon enough.  My check-in for surgery is at 9:30am, and I'm sure I'll be a mess.  I'll get the fistula tomorrow, and in 1-2 months it'll hopefully be ready to use, which is just in time for Minnesota's summer to kick in.  Once we know it's working, I'll be able to get this chest catheter removed and on to some fun in the water again!!!  And no more arduous showers!!!

Please, send the good juju my way tomorrow, and to my surgeon.

2 years.....maybe?

I REALLY wish I would be more consistent posting here.  I used to block off an hour every Thursday night to write a post on my other blog and it was great.  For so many reasons I find that habit nearly impossible to stick with on this blog, and it's immensely frustrating.  So much happens between each post that I am daunted by the task of trying to remember and document it all.  I honestly wish that I'd stop putting myself in this spot, yet I continue as it's been nearly 20 days since my last post ;(

I've been continuing along with regular plasmapheresis since my last post.  I was at 3 days per week, and now we are trying to wean down to two days per week which is better, but it's still 8 hours of driving every week.  My schedule is Tuesdays and Fridays at this time because we're finding that Mondays are starting to get difficult to get me scheduled in PP.  As I've explained earlier, they have to do stem cell patients first, and there are apparently a lot of them lately.  Actually, there are a lot more people seeking help at Mayo right now than ever before.  Even the doctors and nurses are saying that they usually see a dip in the winter because people don't want to come to Minnesota then, but that wasn't the case this year.  So a schedule of Tuesdays and Fridays works right now.

We've been noticing that my hemoglobin has been really low the last few blood draws...hovering around 8.4.  I had one weekend where we were shuffling Izzy around to multiple birthday parties on a Saturday and all I could think about was the sofa at home with a blankie.  If there was an app where I could change the channel on the TV with my mind, I'd be all over it because my arms were tired.  Everything was tired.  And no matter how much I wanted to go go go, my body kept saying no no no.  My doctor ordered 2 units of RBC's (blood transfusion) and I had them on March 4th at the infusion center.  The infusion center has become one of my least favorite places lately because the infusions I get are long and boring, and now something always seems to go wrong with my body while I'm there, and this was no exception.  My body does not like blood products.  At all.  And the more I get them, the more extreme the reaction, which usually includes hives and super-high blood pressure.  The nurses started the first unit, and within the first 20 minutes I could feel something happening, but it wasn't awful and I was tolerating it, so I went on with it and made it through the first unit.  Then they hung the 2nd unit, and things started to change.  The nurse took my blood pressure and it was higher, but within my crazy bp range so I wasn't too worried.  I was warned by my doctor that my bp would rise a little, so I still felt okay.  But then I started itching a little, and I felt a hive on my left upper torso.  Just one, but it was a relatively big one, and that's all it took to stop everything.  It's protocol, but it's still frustrating.  We ended up losing an hour of time waiting on calls to doctors and meds (IV benadryl and solumedol (steroids).  Eventually things started rolling again, but slow, and I didn't end up getting out of Mayo until 7:30pm that night.  It ended up being an 8 hour infusion, and I ended up being there for 12 1/2 hours that day.

Somewhere between the infusion center and Applebee's (where I stopped to get something to eat because I hadn't had much that day) I realized that I lost my debit card, so I spent the snowy and windy drive home trying to convince my bank that I was who I was saying I was and to cancel the card and send me a new one.  Since Joacim has taken over the banking, I couldn't answer the simplest questions, and I was starting to think they thought I was a fraud case, but eventually I made it through the list of 7 questions and apparently answered enough right that I passed the test.  A pain in the ass, but I'm glad for the precautions.

Getting IV solumedrol is no picnic.  I'm glad that it stops the reactions I get.....SUPER glad, in fact, because they're miserable.  But the next 3 or 4 days after receiving the solumedrol is not fun.  Let's revisit some of the side effects:

• high blood pressure
• sleeplessness
• noticeably red face that feels very hot to the touch
• facial swelling

In previous cases it's looked like this:

red face, but not too much swelling

Can you see the difference in the width of my nose?

 Here's how I looked 2 days after the steroids this time:

No red face, but nose swelling again.

I didn't take a picture of my red face this time because we took Izzy to a movie (Star Wars, finally) so I could get out of the house but hide my weird face.  I'm glad it all goes away, and I'm glad that this drug is available to me and that it works, but MAN, I wish the side effects were less invasive to everyday life.

The great thing about all of this hassle is that my hemoglobin went up to 12 by the following Tuesday.  I.  Felt.  Amazing.  On Monday (March 7) I had a stupid amount of energy, so much so that I finally took some of the Christmas lights down.  That task has been completely out of my reach.  The subtle taste of spring we were experiencing didn't hurt either.  Even Tuesday, at Mayo, I did a lot of walking around during my waiting time, just soaking in how good I felt.  Last week was, by far, the best week I've had since Nov 3rd.  Absolutely no doubt in my mind.  I had also been getting weekly Aranesp injections at Mayo, but the waiting time was killing me at the infusion center, and I could totally do these at home, so we got that switched around now which is just one more thing within my control.

The one that doesn't appear to be fully within my control yet is my blood pressure.  I had a biopsy scheduled this past Monday as protocol for 4-months post transplant.  We also wanted to see if the FSGS was visible in the biopsy slides now, as I've been spilling a lot of protein for a while now. The last biopsy I had was on December 22nd when I had my peritoneal window surgery, and no signs of FSGS were there.  We know it's back because of the protein spillage and my history, but when it shows up in the biopsy it means it's more advanced, and we're all wondering if it has.  Logistically for us, it's a nightmare.  We have to kennel the dogs, find a kind soul (thank you Jessica and Blake) to watch Izzy, get her on the bus, take her to gymnastics, feed her and nurture her, and Joacim and I have to stay in a hotel in Rochester due to the risk of bleeding.  After working through all of that, I had it scheduled for Monday.  I did labs early in the morning, and then met with my PA to review them (but they weren't ready yet), and my biopsy was scheduled for 12:45pm.  We had checked my BP in my PA's office, and it was a teeny bit elevated, but it normally is at Mayo (I have an EXTREME case of white coat syndrome now :(  ).  When we checked in in the pre-op area for the biopsy it was a little higher, and each subsequent reading got higher, until it was 171/100...in other words, TOO high to do the biopsy because the bleeding risk is even greater.

I was frustrated, which doesn't help my blood pressure.  I went back upstairs to talk to my PA, he prescribed a quick acting BP med, and I took my regular 2:00 meds plus a Xanax, and went back at 3:15 to try again.  Blood pressure EVEN HIGHER this time.  So the biopsy was cancelled for the day.  We did get an ultrasound done though, and that turned out good.

I felt so guilty for all of the people I inconvenienced.   I know the whole BP thing is out of my control at this point, but it's MY body that keeps failing on me at every point, and there's no escaping the guilt I feel when Joacim misses work and my neighbors have be inconvenienced.  I honestly don't know what happened with my BP.  It's been well controlled at home for the last 2 weeks, so I don't know why, which frightens me because I can't say it won't happen again.  We're going to try again next week (I think) and I'm going to double up on BP meds, take the xanax earlier and ask for sedation (which sounds like a stupid amount of overkill from a couple of big needle pokes) but it's necessary.  We NEED to see what's happening with the kidney.  I could be experiencing rejection and not know it yet because it isn't showing up in the labs, so that's another source of worry.

I did a 24-hr urine this weekend, and I'm currently spilling 14 grams of protein.  It's awful, but it is what it is.

I had a blood draw and random urine this morning.  I have really great veins (not to brag or anything :) but phlebotomists tend to use them...a lot...and they're tired now.  It hurts when getting poked, and I'm having it done two to three times a week now, and they're just tired, so I asked the phlebotomist to use a different vein and showed her the one I wanted to use.  And then she said "but this is a good vein" and did exactly the opposite.  It was a misunderstanding at the end I realized, but it still sent me reeling.  I literally had to go find a quiet corner after it was done to just cry.  I am a walking a tightrope of emotions and sometimes, unpredictably and usually inconveniently, get the best of me.  There's no use fighting the tears and crying, because it just builds and my bp rises and bad things happen.

My doctor and I had a good amount of time today to discuss the status of things, and we both agree that the numbers aren't encouraging.  I'm slowly spiraling and the kidney is starting to show it.  He's has been and continues to be very nervous about my chest catheter, and I continue to be annoyed by it.  I've talked about a fistula before a few times, but he wasn't ready to discuss.  I think he truly fears that I feel like he's giving up on the kidney if we talk about things like that, but nothing could be farther from the truth.  I have such admiration and respect for him for trying so hard and being so invested in my long-term outcome.  I've realized he's a wildly optimistic man, and that has been exactly what I need as events unfold.  I continue to need that, but I also need a dose of realism and a plan.  He said today that I'd probably get a couple of years out of this kidney. He's can't predict it...no one can, but we both know that this beautiful kidney will fail sooner than any of us want and I'l be back on dialysis.  Peritoneal dialysis won't be an option for me this time, sadly, so it's a life of hemo for me.

I miss working out.  I've been slowly starting yoga, but I can only go so far because I start sweating, and that's kind of a no-no with the chest catheter due to risk of infection (at least the kind of sweaty I want to get with hot yoga eventually).  I can't swim with it..hell I can't even take normal shower or bath with it.  And wearing a bra is so hideously uncomfortable because I have to tuck it in the bra, and there are some really sharp edges.  It's also a huge source of infection, even though mine still looks great.

I will be able to use the fistula for plasmapheresis, and there's something appealing about getting use to using it at a lower run rate(60-90) than what's typically done for dialysis (300-400).  I'm terrified of fistulas, of course, because the pictures I've seen are absolutely hideous, but you're all going to have to help me get the hell over that because it will become my lifeline.  Somehow I'll have to embrace it, and you all are going to have to look at it because I won't hide it.  So I have an ultrasound scheduled next week to map my veins for the best location, and I'll be meeting with a surgeon to discuss the surgery itself and what the fistula will look like because, even though I look like hell most of the time, I'm still vain deep down inside.

Also, my hair is falling out at a pretty good amount now.  I posted about this the other day, but here's a comparison from 2 weeks ago to today:

 


Things are tough, no doubt about it.  But when I physically feel better, as I have the past week, I am MUCH better at handling all of the adversity.  A fistula will allow me to go swimming with Izzy this summer.  They take 6-8 weeks to mature, which means I'll have this chest catheter a least that much longer, but I'd rather get this moving right now as opposed to starting in June and missing out on another summer.

I saw this on Instagram today (@elephantjournal) and it sums up how I feel perfectly.  I want to get to the point of being healthy enough to enjoy that beautiful place.  And I've realized that the best word to describe me is not "strong" or "warrior"...it's resilient ((of a person or animal) able to withstand or recover quickly from difficult conditions.).  Yes, that's definitely me.

A photo posted by Elephant Journal (@elephantjournal) on Mar 15, 2016 at 8:41pm PDT

An unexpected bright spot to today

First off, I want to say THANK YOU to everyone that communicated such love and support to me today.  I had to re-read what I posted last night for fear that I wrote something that made me sound like I was completely losing it.  Luckily I hadn't, but what I had written was the real, raw truth, and I'm always happy to convey that at least.

One thing I forgot to mention in my post yesterday was another side effect that I'm experiencing now....neuropathy.  Some of the symptoms of neuropathy (according to Mayo Clinic's website) are:

• Gradual onset of numbness and tingling in your feet or hands, which may spread upward into your legs and arms
• Sharp, jabbing or burning pain
• Extreme sensitivity to touch
• Lack of coordination and falling
• Muscle weakness or paralysis if motor nerves are affected

I've actually had these symptoms for awhile now, but I would always attribute it to a plasmapheresis treatment.  Some days I would come home and not feel awesome, so I'd like on the sofa until I felt better, only I never got better those days.  I'd have these symptoms and remain "couch-ridden" the rest of the day.  But then it happened on the plane ride home on Sunday from Florida, and I just couldn't move my limbs and wanted nothing more than to lie down.  It had been 4 days since a PP treatment by that point.  I described this to my nurse at PP on Monday and she said that it wouldn't be  due to PP, but maybe to some other medicine.  It happened again Tuesday afternoon when I had sat down to read a book, and I couldn't deny that something was off.

So, of course I turn to my trusty friend Google, and researched neuropathy and it was describing exactly how I was feeling.  It's good to have a name for something you experience when describing it to others.   And then I drove to Mayo this morning for plasmapheresis treatment #47.  All went well and I was able to see Dr. Cosio to talk about the neuropathy.  Can I mention AGAIN how much I love the nursing staff at the Plasmapheresis unit????  They never make me feel crazy, and really take a good deal of time to ask if I'm experiencing anything unusual, then asking a lot of questions and documenting it all.  My nurse today did that, and then sent a note to my doctor and, lo and behold, there he was at the end of my treatment today.  I don't have an answer yet, but he's going to add some labs to my appointment next Tuesday, specifically to check my ionized calcium.  Plasmapheresis can strip the body of calcium during treatment and I usually need a dose of calcium at the end, but that might not be enough.  Calcium depletion could help explain some of my symptoms too, so we'll see what Tuesday's results show.

Another reason that it was important for me to talk to my doctor about this was so that it was documented in my case notes.  I had gotten a call from my case manager at Cigna yesterday, and he congratulated me on making the trip to Florida.  And then I was like, "Wait..how did HE know I went to Florida?"  And then I realized that my doctor probably wrote it in his notes, and Brandon (my case manager) had just received an update..the SAME case notes that were just sent to my disability company!!!!

So all night yesterday and this morning I've been thinking that there's NO WAY that they will approve my Long Term Disability claim knowing that I went to Florida!  And I was feeling completely doomed.  But, and here's the bright spot, my coordinator at the disability company called this morning and told me that my claim had been APPROVED and that I was good until August!!!  She actually had a doctor look at my file, instead of the committee of people that make these decisions, and he agreed that I was eligible and saw no reason to revisit until August due to my treatment and health status.  This is HUGE news, and a MUCH needed bright spot.  Now, I have no intention of being off of work until August, but it's good to know that I don't have to add the stress of returning to work before I'm ready into this already intense mix of things.  So yay me!

I hate to end on a bad note, but my hair started falling out.  This is from the prograf, and I completely expected it (hell, I've already experienced it before in 2007) but it still completely wrecks the vain woman that lies buried in here.  

Guess it'll be time to try out a few new hairstyles soon...

113 days post-transplant update

How do I begin to cover everything that’s happened since my last post?  I know that I'm going to regret terribly the fact that I haven't been blogging frequently throughout this period of my life, but I just need a break.  It's funny that I think of blog posts in my head all of the time, I'm just too tired to sit in front of the computer and put my thoughts into words.

Today, I'm 113 days post-transplant.  I wanted to do a post at 100 days, but that was the first day of normal after a 3-day migrant so I just didn't.  My last post at the end of January was right when I got the second dose of Rituximab and we were going to take a break from plasmapheresis to see if the drug worked.  It was a nice break....a MUCH needed break.  I did labs locally, and as expected, they couldn't do them correctly.  I did it 3 times at my local clinic, and my protein came back at 7352, then 920 2 days later, and then back to 4587.  Needless to say, all of that variability gave us nothing useful to go on, and the experiment turned out exactly as I had suspected.

So, I went back to Mayo on Friday, Feb 5 for a follow-up and labs with my doctor.  My blood pressure was creeping up again and I was having some discomfort around the kidney.  I swore I had another fluid pocked, so my doctor ordered another ultrasound.  Luckily it came back ok (meaning no fluid pocket), but it put even more doubts into my mind about my own body and my ability to recognize when something was off.

My protein that day was up to 7314, so we decided to start back up with plasmapheresis that day, and we were going to be intensive about it.  I did it Friday, Saturday, Sunday, Monday, Wednesday and Friday.  I took a break over the weekend (thankfully) but went back on Monday for more PP and also some IVIG.  This time he increased my dose 3-fold, but kept the infusion time the same.  IVIG infusions start slow, and they do frequent vitals checks and then start increasing the flow rate, but it didn't go so well for me that day.  Within the first hour my bp shot up to over 180/100.  We slowed it down, got me a couple more bp meds and then restarted but didn't speed up the rate this time.  This made a 3 hour infusion take 7 hours.  I left my house that morning at 5:00am, and didn't get home until 9:30pm, and I had to drive in a windy snowstorm on the way home.

When I got home, my migraine hit.  And it was intense.  I stayed in bed the entire day that Tuesday..didn't eat anything and definitely didn't drink enough.  The Imitrex wasn't even touching this one, and eventually I ended up throwing up.  I didn't feel much better after that like I usually do, so I just took a bunch of meds to try to help me sleep.  I had PP that Wednesday, and I had to have Joacim drive me this time because I just didn't think I could do it.  I had lost a lot of weight over those couple of days and was pretty dehydrated, so they gave me a bag of saline during PP to help out.  As you can tell, things have generally sucked.  A lot.

I'm dealing with a shit-ton of anxiety right now, and it's manifesting into heart palpitations.  I don't know if any of you have ever had them, but its truly awful.  I feel as though everyone in the room can hear my heartbeat.  Like if you set a bunch of glasses of water around me on a wood floor, you'd see my heartbeat in the glasses of water.  And the worst thing is that they happen at night.  So I lie there in bed, feeling like I'm going to die of a heart attack before this kidney thing takes me.  It's even worse on my left side (and of course I'm a left-sided sleeper) so I lie on my back and ponder the state of my life, which adds even more anxiety.  I find myself googling all sorts of awful things to explain the palpitations, like congestive heart failure and lovely things like that.  Google is my best friend and worst enemy.

I have discovered, however, that if I take my Xanax at 8:00pm with my evening meds, then I'm pretty drowsy by 9:00 when I turn in, and the palpitations are not nearly as bad.  I would usually take my Xanax right when I went to bed, but it clearly needs a little more time to work than I was giving it.  It's working for now...hopefully that continues.

I tried to do some yoga the other day, but I clearly overdid it because the incision area hurt the rest of the night.  And this wasn't a tiny twinge of pain but pretty intense.  It was much better by the next morning, but made me realize how truly fragile my body is right now.

I'm taking keyexalate to help pull more potassium out of my body.  I currently have hyperkalemia (elevated potassium) which effects the functioning of the heart muscles.  One of my bp meds makes the body hold on to more potassium, so in order for me to take that bp med (which is one of the better ones for me to take) I needed to reduce the potassium.  I've been working on it with diet, but I need a little more help.  The probably with this medicine is that it can sometimes induce H.O.R.R.I.B.L.E cramps and diarrhea (yippee....) so timing of the medicine is an issue for me right now.  And I can't imagine how in the hell I'm supposed to manage this, along with everything else, and go back to work.

Speaking of work, I found out a couple of weeks ago that the position I had when I left has been discontinued and now they're creating new ones.  I'd have to apply for this job, but the only way I can do that is if I terminate my leave (which I'm clearly incapable of doing right now) so my company is going to post a job and hire someone.  They say they'll have an equivalent position for me whenever I return, and no doubt they will because legally they have to, but it doesn't have to be a position that I'd actually want to do.  So, another spec of shitty news.

My employer's long term disability company (Prudential) is questioning whether or not I’m actually ready to come back to work.  Back in December I had been working really hard to start walking, and was trying to walk a 1/2 hour to an hour a day.  Some days I was up to 3 miles, and my doctor noted that in his notes.  To both he and I, this was a good sign.  To Prudential, it is apparently the equivalent of "okay to return to work".  Ummmm....if my job was solely doing nothing but walking 3 miles a day then I might understand it, but clearly that's not it.  How in the HELL would I return to work when I spend so much time at Mayo still?  I mean, is ANYONE thinking here?  And I just found out that they're trying to make this decisions on my future based off of doctor's notes from December.  They've never reached out for current notations (which is dumb..honestly...should I have to be the one to tell them to get updated notes??????).  Fuck, this frustrates me to no end.  I'm terrified that they're going to force me to go back to work.  I can't handle it. I'll fail, and then I'll get sick, and this will all be for nothing.

I feel, by far, more week and pathetic now than I ever have in my life. 

I’m battling what feels like depression.

My labs are getting more awful now…protein up over 8700…it might be higher but the range for the lab only goes so far.

So now what do we do?  What other tricks have we got up our sleeves?  Well, there really is only one at this point, and my doctor is trying to convince himself that it’s worth the risks.  There was a paper published in the NEJM (New England Journal of Medicine) in 2013 that talked about a drug called belatacept.

I’ve had a LOT of things done since transplant…a lot of medications, all with some inherent risks.  Adding another heavy-duty immunosuppressive adds even more risk to my already fragile state, and there isn’t a lot of evidence that it works.  That’s the thing about my disease, and I’ve mentioned this plenty of times before, but most of the papers that are written and published use REALLY small sample sizes….nothing that is statistically significant.  And this disease is probably not just one disease, but most likely a host of diseases, so there’s just no way of knowing whether it will work or not unless we try it.  I’ve watched my doctor closely over these last few months, and it’s made me realize that nephrology is a combination of science, art, and whole lot of hypothesizing and experimentation.  I’m sure it’s that way with a lot of other disciplines, particularly transplants, but it’s still cool to watch the method behind the madness unfold (unless you’re in my shoes and none of the art, science, hypothesizing or experimentation works to kick your disease to the curb).

So now we’ve got to decide whether the risks are worth it.  As a patient, it’s hard to imagine not trying something that might have a chance of working at this point.  I mean, I’ve tried everything else.  The thing that stops me is that I’m just so tired of feeling so awful all of the time.  It would be so nice to have a break from all of this…to gain some strength back, lose this catheter and just pretend that I’m okay for a little bit.  To go swimming, sit in a hot tub, take a freaking NORMAL shower.

But there are risks from stopping everything and just letting nature take it’s course.  If we were to stop plasmapheresis right now, my albumin would drop within days and I’d swell up like a ballon.  Albumin is the magical stuff that keeps me from severe edema like this:

When I’m doing PP,  my albumin is within range, my weight is stable, there’s no swelling in my lower extremities or my back.  The negatives about PP is this chest catheter that I’m still sporting, and the effects of the calcium depletion that occurs for me.  It’s a feeling of tingling that starts at my nose and spreads across my face, sometimes moving to my chest.  My head feels like I have an instant sinus infection (no mucous, just the swelling) and my eyeballs are all wonky.

We're going to try to wean down PP to 2 times per week to see if the swelling stays in check and the albumin remains stable.  I think I need to start giving myself EPO injections at home again because the exhaustion is overwhelming.  Fuck, I just want some good news.  Something worthy of a celebratory dinner or something.  Is that too much to ask after all of this????

I'm sure there's probably more to say, but I have to get up early for PP at Mayo tomorrow, and I'm just beat right now.  I'll try to get better about post frequency as I know some people are actually reading this, although not nearly as many as were reading it when I was going through the transplant which saddens me.  

Another Rituximab infusion today

The last time I posted was just after I had gotten some bad lab results regarding my protein spillage.  Since then I've pulled myself out of my little hole again.  I'm getting good at doing this lately because, well, I get a shit-ton of bad news lately it seems.

I did plasmapheresis 2 more times last week and was a little wiped out going in to the weekend.  I had been experiencing a lot of pressure in my upper torso (which I've written about a gazillion times), but on Sunday, it all went away.  And my blood pressure finally started dropping.  It just felt incredible.  That feeling of fullness or pressure is absolutely miserable...wouldn't want to wish it on anyone, but it's clearly blood pressure related.  It's so hard to be patient waiting for meds to work because I've gotten very used to quick results..not always the ones I want, but they're quick.  Blood pressure meds are a different beast and can take a few weeks for the full effect (at least that's how it is for me...I'm no doctor....I'm just relating my experience).

I went to Mayo again on Monday to have labs done and plasmapheresis.  The plasmapheresis was uneventful, but the labs weren't and I got crappy results in regards to my protein again:

One day it's up, then it's down, and then it's up again.  It's been INCREDIBLY frustrating because it really feels like there's no scientific rhyme or reason to the change, but what's worse is that, when you look at the graph, you can see that the overall trend is increasing, and that's not good news for this kidney in the long run.   So, we're going to try Rituximab again.  I had a dose of it 3 weeks ago, but we started doing plasmapheresis rather aggressively right after it, and my doctor thinks there's a chance that some of it was removed through the plasmapheresis.  So THIS time, we're going to do a Rituximab infusion and STOP plasmasphersis for a week or so to see what happens.  I actually was at Mayo this morning for the infusion and I didn't experience a reaction this time because I received IV Solumedrol (steroids).  Steroids are amazing (yay, no reaction) and awful (book...EXTREMELY HIGH BLOOD PRESSURE RIGHT NOW) at the same time, so its important to use them cautiously. Even though my BP is through the roof right now, I'm still glad we used it because the reaction I experience is awful and scary.  The bad effects will wear off quickly and hopefully my bp will drop tomorrow.

We also are trying to wean off of the amlodipine due to the fluid retention issues I have with it, so now I'll be taking a half-dose of it in the evening, and adding a new med called Tenex.  The side effects of the Tenex are sleepiness (so I'll be taking it at night), dry mouth and depression.  I'm at a low dose so I don't anticipate any problems, but at least I know what to look for.

I'll do labs on Friday and Monday locally, which will be a first since transplant.  It makes me terribly nervous to do them locally because I KNOW that they're done right when I go to Mayo, and my doctor can see them easily and instantly.  When I have them done here locally, they aren't always processed correctly, and sometimes they don't even run the right tests.  Then the results are faxed to my doctor, and they aren't in the medical system in the same way, which means I won't be able to see them on my Mayo app on my phone (which is one of the most incredible apps I've used, btw), so there are delays built in already.  Fuck, I actually hate doing them locally, but it makes no sense to drive 4 hours for labs.  And I've got to get used to doing them locally, and getting all of the kinks worked out for my long-term sanity.

I had a pretty frank discussion with my doctor today about long-term issues.  Have I mentioned how great my doctor is?  I mean, he knows I'm an engineer and we got into a discussion about fluid mechanics in the kidney.  Nerdy, yes..but awesome.  Anyway, I'm concerned about long-term implications with the high potassium, fluid retention and protein spillage but mostly I'm worried about the day my doctor gives up, and I told him that.  And I'm happy to say that he won't give up on this kidney, even though we both know that 6 grams of protein spillage means a much shorter kidney life than either of us hoped for.  Anything we can do to lower protein loss is a win and that's what we're going to focus on with the Rituximab and the break in plasmapheresis.  Some of the meds I'm taking increase potassium, but those doses will either lower or go away entirely in the next 3 months. The fluid retention is directly related to the protein loss, and thankful the Lasix is keeping it in check for now.

I was REALLY down last week.  I'm being totally honest when I say that there isn't a single minute that I'm awake where I'm not thinking about this kidney, and it consumes me sometimes.  I'm a terrible wife, mom and friend right now, but I'm a great patient, and I guess I have to be OK with that right now, knowing it's not for forever.

Feeling defeated tonight.

My albumin/creatinine ratio today had risen from 3159mg/g on Friday to 5986mg/g this morning.  That's nearly double in 3 days.  And for the LIFE of me, I can't come to any reasonable conclusions as to why.  I was on such a good, DOWNWARD trend up until today.

I haven't spoken to my doctor yet about these results, so understand that everything I'm writing is my own brain coming to it's own worst conclusions.  So last Friday, we changed up my amlodipine to stop taking it in the morning, yet continue with the 5mg dose in the evenings, which I've done since Saturday morning's dose.  I did notice, over the weekend, that I was feeling less and less good.  I was retaining more and more fluid, my weight was increasing as well as my blood pressure.  I explained away the blood pressure by the amlodipine dose change.   I understand that these things can sometimes take a few days to level out, so I didn't want to freak out too much.  By Sunday, I could REALLY tell that my blood pressure was high again, and sure enough it was 160/97 Sunday evening (which is terrible, for anyone that doesn't know that).  I had easily gained 2-2.5 kilos since Friday as well, and I was feeling every single one of those, with seemingly all of the fluid accumulating around my ribcage and my eyes.  Fuck, it just feels truly awful.

My bp readings during plasmapheresis were high today as well (not as high as at home, but higher than the last few sessions had been).  I spoke to my doctor about how I'd been feeling lately, and he agreed to increase the lasix for a couple of days to see if that helped with both the fluid retention and the blood pressure.  He didn't want to change the amlodipine again because we both know that it's going to cause lower extremity swelling on me, so the hope is that losing some of this fluid will lower the bp, and I'm on board with that theory.

But tonight, right before Izzy's gymnastics class (which I had actually planned on going to for the first time since transplant) I casually checked my lab results from today and just felt like I had been punched in the gut.  I just can't understand, and I just can't stop my mind from swirling around the number.  What does it mean?  What is this kidney trying to tell us???  Is it unhappy about the higher blood pressure?  Is it upset about the fluid retention?  What does it NEED to be appy again?  I just feel so defeated.  I'd love to think that this lab result was an outlier, but I don't.  My gut has been telling me something is off all weekend, and my gut was right.  I'd love to think that when I get labs done on Wednesday again that it'll be back in the 3000 range, but my protein hasn't ever dropped that fast.  Once it gets high, it takes weeks to recover.  In my brain, seeing that number tonight set me back 2 more weeks.  That's 2 more weeks of plasmapheresis....2 more weeks of this catheter...2 more weeks of the early morning drives...2 more weeks of a less-than-ideal existence.

WHY did I even check the results?  It's completely ruined my night, and made me think of all sorts of horrors.  Even though the results wouldn't be any different, I still wish I had heard them from my doctor.  And I think that might be a problem for me too.  I realize that I'm becoming very dependent on him for my mental stability in regards to all things "kidney", and I think that's dangerous.  SOMEDAY I'm going to have to deal with setbacks like this possibly, and not have the luxury of a face-to-face or scheduled phone call with my doctor the next day.  I have been INCREDIBLY fortunate in that my nephrologist continues to have regular contact with me this far post-transplant.  I'm not sure if "lucky" is the right word because the reason for the continued contact is due to the intricacies and complications of my case.  Most patients at this point have been either released to their local nephrologists, or are seeing PAs (physician assistants) regularly and seeing their doctors with much less frequency.  I haven't even had one set of labs done locally yet, and I'm terrified for that day for fear that they're going to screw up the processing of the labs, and then throw off my meds.  

I'm guessing this happens to a lot of people who have been through some sort of trauma.  And let me be clear...the transplant itself is not the trauma I'm referring to.  The transplant has allowed me to be here to bitch today :)  The trauma is the recurrence of my disease, and the assorted complications due to it.   I'm strong, yes, but a part of me is terrified of being released from my team at Mayo.  I guess  a part of me may also be thrilled when that time comes, because that means I'm well enough to be on my own, but I'll probably always be a teeny bit terrified.  It's clearly time for me to start seeing my therapist again to help me work through these issues.

Living by the numbers....

I feel like I'm letting "numbers" dictate my life right now.  Between the scale and my blood pressure cuff, I feel like numbers dictate everything about my day.  More specifically, it's affecting how I feel physically.  I may be having a good day, but then I'll step on the scale to see how the diuretics are working, and when I see that I've continued to gain weight, I freak out.  That makes me want to take more diuretics, which are inherently bad for my new bean.  And then I start to feel like I'm drowning in fluid, even though I felt find 5 minutes before.

I swear, all of this shit is really starting to mess with my head and I need to figure out how to get in front of it because I'm sick to death of reacting.

The weight really bothers me, I can't lie.  I think I should be lighter than I am because of all of the muscle tone that I lost after surgery.  And I also only eat half as much as I used to, so I don't understand why my weight is nearly the same or a little more.  I know that I'm retaining fluid, but it feel like it's set up residence in my torso lately and it's uncomfortable.  I've spent a lot of time this weekend lying on the sofa with my heating pad because it's unbelievably cold here in Minnesota right now, and it feels like I feel worse the longer I sit here.  Once I get up and move around, I feel a LOT less pressure in my chest and lungs.  But at the same time, I've been sitting a lot trying to keep my legs up to prevent swelling in my lower legs.  It's gotten a lot better since we switched up the amlodipine (blood pressure med) on Friday, only taking it in the evenings now as opposed to mornings and evenings.  That's made a HUGE difference in my ankle swelling.

With all of the protein I'm still spilling (which is certainly less than it was but not as little as we'd like) I'm bound to have some swelling, but it's hard for me to deal with any of it.  My expectations after transplant are to have a normal life.  No one goes into a transplant thinking about all of the sacrifices they'll have to make, or the substandard parts of their life.  I sure as hell didn't.  I don't want to be a whiner, but my expectations after transplant are to live a completely normal life (except for all of the meds....I can deal with those), but I don't want to have to watch how much potassium or phosphorus I consume, and I don't want to have to freak out about salt because I'll retain fluid.  I just want to live like a freakin' normal person.

Since we stopped the amlodipine, my swelling in my legs/ankles has gone down, but my blood pressure has gone up, which I'm sure will make my numbers shitting tomorrow when I go to Mayo.  I can't get into plasmapheresis until 1:30pm any day this week which makes for long days when you have to get blood work (which has to be done by 8:30am).  Luckily, tomorrow I only have urine labs, and I can do those at any time, so I won't have to drive at 5:30am!!!

I was talking to my doctor last Friday, and mentioning that both Izzy and Joacim were showing signs of getting a cold, and he then wanted to do an IVIG infusion (bleh), but with plasmapheresis being so late, I'm not sure how we're going to fit it in, so I have absolutely no idea what I'll be doing this coming week except for tomorrow.  The rest is totally up in the air.

Right at this moment, I'm just not feeling great.  I can tell when my blood pressure is high, and I can feel every kilo of weight that's extra.  It makes every breath noticeable, and a constant reminder that I'm still not OK, and that there's still not an end in sight.  I wish I could go a whole week without having to check my weight or blood pressure....to see if it would change how I feel physically.  I mean, I wonder how much of this is in my head and how much is real.  I honestly can't tell anymore.  And what's in my head can be manifesting physically too, so I don't know if I'm ever going to know.

69 days post-transplant

There were a few times over the weekend that I wanted to get on here and blog about how great I was feeling, but I was feeling so great that I didn't feel like blogging!!

A little recap.....my doctor started me back up on Lasix (a diuretic) last Monday (40mg 2x/day) as I was having some issues with fluid retention.  By Thursday, I had gone from ~66 kilos to ~62 kilos, which is a pretty drastic weight loss in that short of a period of time.  Diuretics aren't exactly good for the kidney (and my creatinine had gone up since I took them), so I stopped taking Wednesday night and wanted to see what would happen.  Honestly, I was surprised that things went pretty well.  As I said earlier, I felt really good this weekend.  I cooked some meals, walked A LOT on the treadmill, laundry.....NORMAL things.  And I could breathe....it finally felt like I could take a deep breath (figuratively and literally).

By Sunday I started to notice that the weight was creeping back up again, and I had a difficult time falling asleep last night, so I took 20mg of Lasix this morning to see if I could pull off a little extra fluid today.  I'm glad that my doctor has taught me enough, and trusts me enough, to adjust my dose as needed.  He wants to make sure I'm comfortable, but not too dehydrated (as that can happen quickly on diuretics).  Since I was getting uncomfortable, I started again, but at a much lower dose.  I'll weigh myself here in a little bit and see if I need to take another dose this afternoon.

I drove down to Mayo this morning for labs and plasmapheresis.  Have I mentioned how freaking cold it is here right now?

My labs have to be done before 8am in order to get my Prograf trough level, but my plasmapheresis wasn't scheduled until 1:00pm, so after labs I headed over to the 19th floor of the Mayo building, ready to spend the morning binging on Netflix and napping as that area is really quiet with comfy chairs.  And the view isn't so bad either ;)

I was so happy when the apheresis unit called at 8:30 and said that they could get me in at 9:30am.  WOOHOOOO!  Saved from spending the whole day at Mayo!!!!  The session was uneventful and they changed my site dressing.  And with a new year comes a new deductible, which is why I now know that it costs around $120 in supplies just to change this dressing and I have to have it done every 7 days...

It was time to do it anyway, as the last site change had been last Monday.  After my shower on Saturday night I noticed that the Tegaderm (that's the thin plastic film covering the entire site....it's what they use to cover an IV when they put one in your arm) wasn't keeping everything sealed, and the antibiotic disc that surrounds the actual site coming out of my skin was completely soaked.  I, of course, freaked out a little, and then got my mental shit together and covered it as best as I could utilizing my PD catheter training.  It seems to have done the job as the site still looks great, but I'll confess that I'm starting to get anxious about getting this thing out.

* Side note:  Just checked my lab results and numbers are better.  My protein is still going down (albumin/creatinine ratio is at 4484 mg/g, which is down from 5509 mg/g on the 6th), potassium is still high but I'm retaining fluid so I'll explain that one away, and my prograf level is 6.9, which I think my doctor will find acceptable right now.

I can tell you that plasmapheresis is really starting to take it's toll on my body.  I was curious, so I took a look through my medical records, and would you believe that I've had 32 plasmapheresis sessions!!!  That is a freaking LOT of hours lying in those beds, getting my plasma removed and replaced with albumin.  When I first started doing them, I didn't really notice a difference (you may recall that I did 4 of these sessions the 4 days before transplant).  But now, I can definitely can tell.  I always ask for the calcium during the last bottle in order to remove the tingling sensation in my body, and I'm terribly exhausted when it's over.  I can make the drive home without issue because I'm just sitting, but the ache starts to set in during the drive, and by the time I get out of my car when I get home I'm pretty sore in my hips and legs.  I'm not sure why this is, but it's definitely a side effect that I experience.  And I'm usually pretty wiped out the rest of the day, so now I don't plan on doing anything on the days I have plasmapheresis.

Even through all of this, I'm trying very hard to walk for at least 30-60 minutes a day on the treadmill.  Even if is a slow walk, at least it's movement.  I also started using my pilates machine as well (very gently, of course), knowing that the journey to regaining muscle tone is going to be a horribly long one and the sooner I get started, the better.

One last thing.....Prudential (who is the company that is managing my short term disability) is processing my long-term disability claim in case I'm not ready to return to work by February 16 (which is the last day of my short term disability coverage).   This kind of freaks me out a little, as I can vividly recall the following words coming out of my mouth, "if I need long term disability, then something has gone horribly wrong".  I guess it's good that Prudential is on the ball and wants to ensure that I don't have a gap in benefits, but I'm still hoping that there will be a way to get back to normal somehow soon.

After 2 days of Lasix.....

I've been feeling pretty poorly lately, no doubt about it.  I feel full and swollen to an extent that I can't quite convey.  It feels like my lungs are getting squished under a bunch of water.  I feel swollen in my feet, ankles, lower legs, abdomen, chest, neck, nasal cavity and eyes.  Seriously, nearly everywhere.

I spoke with my doctor during plasmapheresis on Monday and voiced my concerns/symptoms.  I was thinking that this was caused from either the Cellcept (immunosuppressant) or the amlopidine (blood pressure), but my doctor could see that I was really swollen, and suggested we start up the Lasix (diuretic) again, and I could not have been more thrilled.

I started it yesterday as soon as I was done with plasmapheresis, and took another dose around 4:00pm.  When I woke up this morning, I felt like a new person.  I mean, I could BREATHE and I had energy and I wasn't so damn shaky and unsteady.  It was awesome!  So I totally took advantage of it and got my hair done, went to the grocery store and the dry cleaner, back to the grocery store (because I forgot my bags at the drive-up window...idiot move) and then the pharmacy and finally back home in time for our new treadmill to be delivered and assembled.

I'm sure people are wondering why I did all that, and the answer is because I COULD.  I know that the weather is going to make a MAJOR shift this weekend, and it's going to become extremely cold and extremely dry, which means people are going to get sicker and sicker as the week progresses, which means I'm probably going to end up being inside most of next week.  Of COURSE I'm worried about germs.  I'm ALWAYS worried about them, but I also want to live my life, and when an opportunity presented itself this morning in the form of me actually feeling human, I decided to live like I was one.

The tiny little problem here is that, when Joacim got home, he said that I looked swollen, and ever since then I've FELT swollen.  I've appreciated Joacim's honesty when it comes to the swelling because it was validating how I felt.  But today I wasn't feeling swollen when he said it, yet it totally affected how I physically felt after he said it, and I've been miserable ever since.  I had been wearing compression stockings since I got home because my ankles and feet were enormous, and those things work really well but tend to make me feel....well....full, for lack of a better description.  I just took them off and feel better, but my abdomen is still pretty puffy, so I don't know what's going on.

I feel like something's still not quite right.  I thought that 2 days of Lasix would put me back where I wanted to be and get my blood pressure under control.  My weight has lowered, but my blood pressure is still as high as before (160/100), and that's with 2 bp meds currently.  I have labs, plasmapheresis and an ultrasound scheduled tomorrow to see if anything is going on with the kidney (more fluid pockets????) so please keep your fingers crossed for a drama-free day and drama-free results.  Thanks all!