Happy Birthday!

 

 

Daniel knows exactly what to do!

 

Hmm, not sure i like being so dirty!

Man this is good!

Today is the twins’ first birthday.  Happy Birthday Daniel and Sophie!

Thinking about the day one year ago when this all started, it feels somewhat surreal.  I certainly never thought anything like this would happen to me.  For those of you who did not live through the episode last year, I was 33 weeks pregnant the weekend after Thanksgiving.  I had felt really good in my pregnancy until the end when I developed lots of swelling.  On Sunday that weekend, I developed nausea, which turned out to be because I was in acute renal failure.

I went to the doctor that Monday morning and they sent me directly to the hospital; the babies were delivered by emergency c-section at 2:02 pm and 2:03 pm.  At first everything seemed well in post-op, but soon it became clear that I was still bleeding and developed DIC.  The next two weeks for me are a blur, but eventually they diagnosed me with Hemolytic Uremic Syndrome and treated me with plasmapheresis and dialysis.  It was pretty scary for a while but after five weeks the babies and I went home.

Now a year later, here I am with a kidney thanks to Sarah and Brutus and (at least so far) there is a happy ending. My creatinine has been stable around 1.25 and the HUS has not recurred.  I started back at work on Monday and am exercising and feeling really pretty good other than some side effects from the medications.

I had family in town for Thanksgiving, which was wonderful, and Daniel and Sophie got to hang out with their cousins.  On Friday we had a small birthday party for the twins.  We gave them each “smash cakes” – Daniel knew exactly what to do and dug in immediately.  Sophie liked the cake but didn’t really want to get her hands dirty – too squishy!

And best of all, on Sunday, everyone went home and I was in the house alone with the babies.  I am so appreciative of the help that you all have given me – I couldn’t have made it without you, but now 5 weeks after the transplant I have been cleared to lift and take care of the babies on my own!!  You can’t imagine how good it feels to be able to lift my babies.  At one year they are cruising and pulling up, waving at each other, and at us, although Papa (my father) is Sophie’s favorite waving target.  They babble nonstop, are great sleepers, massive droolers, and the sweetest babies ever!

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Loss

To some degree I’ve been at a loss for words….

But I had someone ask me today if I feel a let down at this point post-donation. And I had to stop and think. If you recall, one of the concerns pre-donation is that the donor could have this sense of loss, or post-partum like depression post donation. The concept being that there is a whole bunch of hype and attention heaped upon the donor pre-surgery, and once the deed is done, the attention shifts to the recipient. And you might recall that my response was that while I understand the concept, I don’t like attention, I don’t crave it, I prefer to just be me. So, in that respect – nope, don’t feel any profound loss. I do feel some itching though…my large incision itches. Oops, that was a tangent….

My good friends Billy and Stephanie had to give up one of their dogs this weekend. They are so sad. And I know it was a really hard decision for them, but the circumstances made it necessary. But, it’s really made me think more about this concept of loss. The reality is – I don’t think I could ever give up Brin or Gabby (or Sebastian or Kirby). And if something happened that I needed to – that would be a harder decision for me than donating a kidney to help someone else. So, I’m willing to suffer a loss in some circumstances and for something that has really so far proven to be with little consequences to me, but when it comes to breaking my own heart with the loss of one of my pets – I’m not so courageous.

Shifting a bit – I needed to have my annual appointment with my PCP (primary care physician) this morning. And it was kind of amusing. I pretty much had to tell her what to expect in the coming months regarding monitoring my health. She is totally knowledgeable about what impacts kidney function, etc – but has never treated a living donor. She was so fascinated with the surgery and my recovery. She looked at my scars and thinks everything felt okay and seems to be healing very well. My blood pressure was a bit high so I need to start monitoring that, but for some reason my BP does seem to fluctuate a bit. If it stays elevated though, I will need to start taking meds. I’ll blog more next about the impact of hypertension on the kidney(s).

For all you pet(dog) lovers, please be thinking about and praying for Billy and Stephanie and hoping Newman the Corgi finds the perfect home for the holidays.

Thanksgiving

After eating too much over the past couple days, I need something to keep me busy. So before I head upstairs to finish HP: Deathly Hallows so I can go see the movie tomorrow I thought it would be nice to revisit my pre-surgery hopes on Thanksgiving.

So, as we move forward….what I’m hoping:
1. That both Lisa and I have the outcomes the UCD surgical team seems so sure of…
This one seems to be so far so good. I’m feeling quite fine, but the amount of food I’ve eaten these past couple days may be causing my stomach to press on my incision area and thus re-awake some discomfort. At last check, the kidney is doing well with Lisa and she is mending as well.

2. That I don’t get a headache!
The coke at 3:15 am pre-surgery did the trick. No headache when I woke up from surgery. I did have major cotton mouth and all I wanted was water. Which I was denied for hours! I got ice chips. Yippee! But, the hope was realized.

3. That only having one kidney will mean I pee less often (and anyone who shops with me should have this hope too!)
This is the one that really pisses me off. Still peeing. A lot. Might need to give away part of my bladder. (just kidding!)

4. That I don’t drive Mary and Bob nuts during my forced stay in Denver
As far as I know they weren’t having midnight discussions about how to get me out of their house earlier than planned. On the day I left, Mary did NOT take me to the airport 6 hours pre-flight just to get rid of me – so don’t think I drove them tooooo crazy. As I’ve mentioned before, so entirely thankful for their hospitality and lovely place to recuperate.

5. That my dogs are super well behaved and LOVE leash walking when I pick them up
Hmmm…this is a tough one. They are much better trained. They are especially good at “waits” – they have to wait before going outside, going out the gate, eating, getting in the car. They are MUCH better at stays – as long as Gabby’s tail wagging doesn’t count against her. Brin is better at stay then Gabby. Leash walking – they are better – but still need constant reminders. Overall, it’s up to me to keep them trained – but having them at DDW for 3 weeks was an incredible blessing.

6. That Bingley, Brin and Gabzilla are having a wonderful time at Denver Dog Works
They don’t talk. I don’t know.

7. That our families and friends aren’t too distressed by all of this.
Overall, I think this hope has been achieved as well. I know I have family members that continue to think I’ll need some special sort of attention since I only have one kidney – but I think I have everyone else firmly convinced that I’m perfectly fine.

So for me, once again – it’s time to be thankful for everyone who has sent notes of support and who have really buoyed my spirits during this journey. I’m extremely thankful (and blessed) that I continue to be in excellent health and it allowed me to donate in the first place. I could go on and on and on – but will just say – thanks to all of my friends and family and those of you who continue to help Lisa out! Hope everyone had a wonderful Thanksgiving.

The Other Shoe

Graphic of biopsy of native kidney using ultrasound guidance

I have been too nervous to blog for the past few days.  My creatinine, the measure of my kidney function, which had been beautiful at 1.11 (normal is 0.4 – 1.2) had gradually crept up to 1.20, 1.22, then and 1.29 yesterday.  I was afraid that we were heading towards another episode of rejection.  Today, fortunately my Cr. was down a bit to 1.24.  The doctor told me that this is not what rejection looks like and I need to relax.  There are many reasons the Cr could go up.  The major one is probably my ProGraf (tacrolimus) level, which was high.  This is one of the anti-rejection drugs and it actually causes kidney toxicity long term or at high levels.  They aim for levels in the 6-8 range and mine have been hanging in the 7’s for the past few weeks, but yesterday, for some reason, it shot up to 13.  Today it was still a bit high at 10.  Other reasons besides rejection for an increased creatinine could include dehydration, a bladder infection, use of the antibiotic Bactrim, or just random variation.  People have told me that the Cr will just normally bounce up and down for a while.

The problem is every bounce causes my heart to stop! I really really REALLY want this kidney to work for a long long time.  Not being on dialysis is SUCH a good thing! Eating a normal diet is such a good thing! So I end up going through half the day holding my breath waiting for my lab results and the other half stressed for my results the next day.  It is a fine line between wanting to have enough information so that we can act on a true problem quickly but not so much that normal random variation makes you crazy.

So what would we do had it been up again today? If it had been up a little bit, they probably would have done an ultrasound of the kidney looking for problems, a urine culture to look for infection, etc.  Had it been really up, they would have done a biopsy.  A biopsy means they use a gun-like device to shoot a retracting needle into the kidney and get a core sample of cells to see what is really going on in the kidney, i.e. is there evidence of rejection, and if so what kind – antibody mediated or cellular-immunity mediated.  I had a biopsy of my native kidneys back in February, which is what told us that my kidneys were not going to recover.  A biopsy of native kidneys is a bit sticky since your kidneys are on your back side under your ribs.  It is a tough place to get to and if you bleed from the biopsy, which is a rare but not unheard of complication, you cannot easily compress the kidney to stop the bleeding.

A biopsy of a transplanted kidney is much easier though.  Remember the kidney is right there in my right pelvis so it is easy to access and much easier to compress if it bleeds.  It would have meant an overnight stay in the hospital however, and since I have family in town for the holidays, I am very glad we don’t have to do that right now! If I had evidence of rejection, treatment would depend on what type.  Treatment options are many include more high dose steroids (my face and neck are quite fat enough thank you), more plasma exchange, or other options.

But for now, we are actually dropping my prednisone to 15 mg.  Hopefully this will help with the fat face, the shakiness and the hunger.  Next lab check is Friday.  We will probably continue to check my labs twice per week for another 4-6 weeks or so since we need to monitor for recurrence of the HUS now that I have had my last dose of eculizumab.

Happy Thanksgiving everyone – there is much to be thankful for this year.  Next Tuesday is the babies 1st birthday and marks the one-year anniversary of this journey.

Mysterious Ailment

a little bit of ornery

Those of you who know me, know that I’m the direct, sometimes step on toes, not always diplomatic in my approach type person. So, you may question this new ailment I mentioned the other day as actually being “new”. As part of this donating a part of my body to another, I’ve really been taking a hard look at my life. Not spending too much time dwelling on the past, I can’t change that – but focusing on the present and the future. This is allowing me to determine what am I most thankful for, what I actually ENJOY doing and what are those things that perhaps I can do without. Unfortunately, for those that work with me – this introspection has crossed over into my professional life. And where in the past – I may have answered a request with – of course, I’d be glad to do that for you – I’m now finding myself questioning why I’m being asked to do something, and sometimes saying – get ready….NO! This has kind of surprised some folks. What? I asked someone to present or to review and fill in blanks and they are questioning it? Now, I am being diplomatic and trying to be helpful in this process, but I’m really learning that people don’t like to be questioned. Thus, in a conversation with a very bright more medical friend – she suggested that the removal of Brutus has stopped the suppression of a sort of orneryinhibitor enzyme. Yep….I’m more ornery with only one kidney! What has been interesting – is a number of things I’m asked to do – when I push back – the person isn’t sure why I’m doing it. It’s just the way it’s always been done. And you know what – this type of thing spills into our personal lives too. So while maybe questioning behaviors and expectations is a bit heightened in me, I don’t think it’s the result of only one kidney, but more the result of a fairly significant life change. One that is making me realize the importance of simplification, streamlining, getting rid of baggage, etc – and it’s something that everyone can do. I’m convinced we make this world much too complicated.

 

Now then – this was my first full week back at work. I think I only took a nap one day. I’m having some minor problems with my IV site. I sent Lisa a text on Wednesday asking her if it’s normal for my IV site to be escalating in pain. I guess that’s a no! I was meeting some friends for lunch that day – both MD’s – who graciously looked at it. Basically, (from my internet research) it seems to be fairly common – but there is nothing that can be done other than hot compresses to reduce the swelling. However, if my wrist area or arm starts turning red – I’ll be presenting to the ER. For now, hot compresses seem to be working – my pain is reduced (no longer radiating to my fingers) but there is still swelling. I do have to say, if this is the extent of my surgical complications – I really feel blessed! I’m mainly back to wearing “normal” clothes – in that I no longer need to wear sweats to alleviate pressure on my tummy. Today I’m actually in jeans I haven’t worn in a year! The dogs got an 80 minute walk this morning – and we all felt great afterwards. Well, I assume they felt great, they came home and ran around the yard like idiots. I then finished my fall planting of mums and some more spring bulbs. The Buckeye football team prevailed yet again this week and I learned while one of our blog followers hasn’t actually converted to a Buckeye fan from a Wolverine status – Brutus is encouraging some more open-minded thinking (hmmm…wonder if this could work in our government some how?).

So with that, I encourage everyone in this week of Thanksgiving to also think about the concept of importance. What’s important to you? What can you change in your life so that you have more time for those important things?

A very short blog

One month anniversary! At least 4 weeks….
The (Ohio State) Buckeyes are in the top 10 in not one, but two sports. Go Brutus!

And we have finally diagnosed a complication for me: suppression of orneryinhibitase enzyme. More to come on this phenomenon in a future blog.