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.

First time solo

I'm spending my very first night without Joacim since I started dialysis.  We pushed it out as long as we could, but we eventually knew that he'd have to travel, and now is as good a time as any.  There isn't anything eventful happening (hopefully not, anyway :) this week, so we should be good.  I have a couple of early meetings far away, and I need to figure out how I'm going to navigate that with Izzy, but I'll make it work somehow.

Dialysis is going well still.  I've had a few more cramps, but I'm also hoping that my workouts are contributing to them somewhat...muscles seem to be a bit more "touchy" lately.  I did pilates on my reformer on Saturday, and I was INCREDIBLY sore on Sunday (but the good kind of sore :) so I decided to rest.  I've done some sort of exercise every day (except for 3) so far this year, and I'm very proud of that.  It wasn't easy to get started again, and it isn't always easy to stick with it, but I'm finding that I feel better when I do some sort of exercise, even if it's only 30 minutes of pilates, or a shorter yoga class....anything is better than nothing.

I hope this helps to offset the extra 500 calories from the dialysis solution.  Some days I'm not as hungry as others and I don't worry about it too much.  But then there are THOSE days where I feel like I'm snacking all day.  I have a few of the in a row, and I see my weight climb, and PANIC sets in.  But then I have a day like Sunday (started to feel REALLY bad late afternoon...horrible gas pains) where I don't eat much at all, and the weight just falls off.  I ALWAYS need to remind myself that this is fluid balance, not weight swings.

We planned our vacation this past weekend as well for the spring.  The first place we selected was a home to rent on Don Pedro Island off the cost of Florida.  This should've been no big deal, but there was a ferry that you had to take from the mainland to the island, and I was worried that there would be an issue with my dialysis supplies being delivered to that.  We ended up selecting another home for the week that's on the mainland just to ensure safe delivery (the other place ended up being booked too).  This is the first time I'll be traveling on dialysis so I'm hoping all goes well.  The house we rented has a private, screened-in pool, which will be great for Izzy, but I won't be able to enjoy it this year.  At least we're close to the beach where I CAN swim :)

Kettlebells are Killer.....

So I've been doing yoga lately.  I've not gotten into a good rhythm, which I believe will be absolutely impossible with my job, but I do the best that I can.  But there are some days where I just don't feel like leaving the house, which is how I felt yesterday.  I felt guilty for not having worked out for a few days, so I decided to pick up my kettlebell and get to work.  I picked http://kettlebellsworkouts.com/ as my resource to start back up again.  I had a Bob Harper DVD, but that thing was killer from the very beginning, so I wanted to ease into it.  I picked what I thought was a relatively simple, easy workout:

Workout 2 – The Buttocks Lifter

• Kettlebell Reverse Lunge – 10 each side
• Kettlebell Swing – 20 reps
• Kettlebell Squat – 10 reps
• Rest 1-2 mins and Repeat 3-5 times

I only did 3 repetitions of this workout, but I already felt it immediately after I was done.  By the evening, I had a hard time getting out of the chair.  By this morning, I was nearly bed-ridden.  Lucky for me in that my husband doesn't believe in pity (insert all the sarcasm you want here) and got me out of bed to do some yardwork, which feels AWESOME (again, note sarcasm).  How in the HELL can a 10 minute workout hurt SO bad the next day????  I STILL can't walk up and down stairs...I took a soaking bath in epsom salt and I'm lying here typing this with a heating pad on my butt.

Effective?  Yes.  Will I do it again?  Yes.  Will I complain as much the next time?  Probably. :)

It's a BIG week ahead!  Thursday is my transplant evaluation.  It feels like a dream, honestly, to be here now.  I'm a little nervous about all of the info I'm going to get, but excited to feel like I'm making progress in this whole nightmare.  My swelling went down for a day or two, but it's back again, but thankfully much more manageable.  It's all in my belly right now, and a little bit around my ankles.  It's certainly uncomfortable, but at least I'm not embarrassed to show my ankles right now, and I can wear bigger shirts to cover up the bulge.  Wish me luck this week!!!

Day 2

Day 2 of what?

I'd say it's Day 2 of my promise to myself to exercise (as well as day 2 of being without my little girl :(  )

Today I did 25 minutes of yoga.  I found a yoga app on my receiver by Tara Stiles, and it had something like 90 different little yoga routines.  There was yoga for strength, morning yoga, yoga for killer abs, yoga for lower body strength (you get the idea)...

I picked 3 (abs, lower body and hip openers) to start off with, and I think that was good.  I wanted to do more, but I stopped myself because whenever I try to get healthy and work out, I over-do it.  I'm trying very hard to take it slow...my muscles have completely wasted away due to the water retention and protein loss (there goes  my plan to be a body-builder) but I WOULD like to be able to open a jar of peanut butter without my husband's help.  And I want to be able to go sledding with Izzy and not be so out of breath after one run.  All good reasons...all achievable.

I also had this AMAZING little salad tonight that I saw on Pinterest:

Source: l-i-t-t-l-e-w-o-n-d-e-r-s.tumblr.com via Jenn on Pinterest

OMG.  So good.  Just the right amount of tang and saltiness....I think the thing that topped it off was a salad mix I bought today that had herbs and peppery lettuces in it.  PERFECT!