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