Eleven Months

bzzzzzzzzWhat the heck have you got on?

Daniel with his favorite toy, my father's walker!

Yesterday the babies were 11 months old. It is hard to believe that this all started eleven months ago. That is when I took the bizarre leap from doctor to patient. I had a bit of a disorienting moment lying in express admit on Friday in my lovely hospital gown wondering how the hell did I get there? I am supposed to be on the other side of the bed helping other people.

As Karen wrote, Brutus had a little hiccup the other day. I had a feeling of what we call “impending doom” on Wednesday and Thursday and sure enough my creatinine was elevated on Thursday to 1.3 and up to 1.5 on Friday. The reasons could be many (perhaps it was an extension of the pummeling Ohio State gave the Minnesota Gophers on Saturday) but the most likely reason is early rejection. According to Alex Weisman, the chairman of the transplant program, about 20-25% of kidney recipients will have an episode like this within the first month after transplant. There are several different kinds of rejection and without a biopsy you don’t know exactly what you are dealing with. Because I was on the low molecular weight heparin (blood thinner) shots, and have a really low hematocrit (18 on Saturday),they were not too excited about a biopsy and the surgeons and nephrologists recommended empiric treatment.

So on Friday I got the first of 3 doses of high dose steroids. As if my face wasn’t getting fat enough! They admitted me to hospital, yuck, and I also got a round of plasma exchange. Saturday, good news, my creatinine was back down to 1.33 and today it was 1.34. I completed the three high dose steroids – did not sleep at all last night. Tomorrow if it is still elevated will probably get some plasmapheresis.

Daniel and Sophie with Nina and me

Happy Halloween! Had a very fun day today although definitely overdid it (a lot) and I am super sore tonight. Thank you to all the folks who came over to help with babysitting yesterday and Christine for the help today, especially with handing out the Halloween candy. I had two massive bags of candy from Costco and cleaned out the pantry and was totally out by 7pm. Crazy! Enjoy the pics!

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Easier on the recipient…

That really doesn’t make much sense to me.

But first, as Karen asked last night – let’s keep praying and hoping for a rebound by Brutus! Of course, I believe this is a little stumble and Lisa will come through with flying colors. Ironically – for those of you unaware – I AM A BUCKEYE (by default so is Lisa’s new kidney); she is a GOPHER. And the teams meet today on the gridirion. And both Lisa and I live in states where the game on ABC will not be the important one. Boo. Anyway – let the best team (Ohio State of course) win and Brutus prevail as well. For those of you wondering (and you know you are…..) the Ohio State mascot is Brutus Buckeye. I think Lisa should count her blessings that I dropped out of Alabama – or else the kidney would be named after an elephant.

Now than back to the whole experience being easier on the donor and my assertion that it doesn’t make sense.

I should also state that health and releated experiences are totally subjective and very dependent on the individual. The reality – a donor goes into surgery with a full battery of tests behind them indicating they are HEALTHY. This evaluation (described in an earlier post) is to assess if the donor can live with one kidney and if he/she is healthy enough to donate. Now, by default the recipient NEEDS a kidney – not that they are the unhealthiest person on earth, and also need to be cleared for surgery, but a person NEEDING a kidney to live is at a lower health status starting point due to their kidney disease.

I think some of the myth of the recipient doing better may come from history and the fact that kidney removal was much more invasive. It’s now laproscopic – I have 2 1 inch incisions on my left side abdomen and a lovely larger one over my belly button. I don’t know what Lisa’s are – frankly, I don’t like looking at my own, so asking to see hers is not particularly interesting to me. Anyway, prior to surgery, Lisa had been on dialysis 3x per week, plus her super special treatments for the 1-2 weeks prior – and while she felt pretty good and has been optimistic throughout this – it’s not the same as a donor who walks/runs every day, has not been on dialysis and has no discernable health concerns. Some folks who need a kidney are actually in much worse health status at the point of transplant – so really it doesn’t make sense to me that a healthy person and person with kidney disease walk into surgery and everyone expects the not as healthy person to do better?

So we should move onto perceptions. My hypothesis here is that since the donor is healthy prior to surgery and has an organ cut from them – thus body has been invaded – they may FEEL worse. You walk in whole, you walk out with your tummy carved up; you’ve been sedated so your body is reacting to that, you need pain meds which make you feel like crap and it seems to me like everyone WANTS you to feel bad. The recipient, on the other hand, has a new lease on life and a new organ doing those things their body failed to do. Thus, perception wise – perhaps when compared to the donor – they do feel better.

With that… I personally think it’s all about perception, it’s all about the pair (donor/recipient), but in this specific case – the myth didn’t jive. I certainly wish Lisa’s receovery was as easy as mine has been but sometimes our bodies just don’t listen!

First day at home was spent going on a long walk (by how I feel today- maybe too long), and running some errands with my mom. Today, we’re going to do some yardwork – I need to get my tomato plants pulled, some grass seed planted (window of opportunity since the dogs are gone for 10 more days), and my spring bulbs in the ground. We’ll then head up to the Hyatt Tamaya to meet some friends for dinner. If you’ve never been to Tamaya – let me know next time you are in town – absolutely lovely! We’re having beautiful fall weather.

Creatinine up – Lisa down

This is Karen, with a quick update.  Lisa has been going in for routine checkups since leaving the hospital.  They monitor how her new kidney (Brutus) is doing, to make sure it’s working and her body isn’t rejecting it.  The amount of creatinine in her blood or urine is an indication of how things are going.  Well, it’s been creeping up.  When it reached 1.5, it triggered a visit back to the hospital.  That’s not in the panic range, and could just be a little adjustment in the healing processes.  But it’s enough of a concern for her to be checked.  So as of this morning, she’s back at the hospital, and had a plasmapherisis treatment this afternoon.  She’s annoyed, but trying not to make any assumptions.  She’ll stay there overnight for monitoring.  Keep up the prayers and healing thoughts!  We’ll keep you posted.

The Rollercoaster

OK, so maybe my expectations were unrealistic but I really thought I would be feeling pretty great by now.  I think they even told me that the recipient felt better so quickly he/she often left the donor in the dust.  Well for me, not so much.  Yesterday I felt really terrible.  I have lots of reasons – the incision hurts, my red blood count is really low, the drugs suck, I developed a urinary tract infection and on top of it all, I stopped taking my estrogen so I am getting hot flashes.  As I mentioned earlier the prednisone makes you feel really terrible, like you are racing, and I am nauseated and don’t have an appetite.  My face is already getting cushinoid, that fat face that is associated with steroid use.  It’s enough to send a person over the edge! I am so glad that Sarah is feeling well however and she was able to travel back to New Mexico.

Today I had an appointment at the transplant clinic – I got the first of four post-transplant doses of eculizumab, the drug that is hopefully going to keep the HUS from recurring.  The clinic itself is a bit of an ordeal.  You go in between 7-8am and get your blood drawn, then they wait until the results come back and see you on a first-come first-served basis.  We didn’t leave until after 1pm.  My red blood count was up a little bit- to 25. I do have a UTI so started antibiotics.  My creatinine, the measure of Brutus’ function, was elevated, to 1.32.  Possible reasons include the infection, a dose of Bactrim that I took yesterday, or possible early rejection.

Despite that, I am actually feeling much better today both physically and emotionally.  The doctors were very positive.  UTIs are common because of the catheter. The blood that I am still having in my urine is to be expected because of the stent in my  bladder.  They did an ultrasound to look at Brutus and everything looked OK.  I will go back tomorrow for more lab results and if the creatinine is still elevated they will probably do a biopsy to see what is going on.

I am feeling optimistic – I ate better today,  my children are giggling nonstop which is SO cute, it was a beautiful Denver Indian summer day, and it is supposed to be in the high 70s tomorrow.  I think my labs will be better tomorrow.  My mood, of course, is conditional on Gretchen not winning tonight on Project Runway.  If she wins, I am going to sink into a deep depression because clearly all is not right in the world.

Home….

Back in New Mexico – a nice sunny day, close to 70. Kirby and Sebastian (my feline roommates) seemed happy to see me – but maybe they were just hungry. Post-op visit was perfectly uneventful – other than I got some special adhesive removal pads – yes – that is a highlight for me! Blood pressure was perfectly normal, nobody seemed concerned about my incision sites so I guess they are doing well. Kirby has already tested them as well and they withstood his pressure. I guess I won’t hear from the transplant unit for 6 months when I’ll receive orders for kidney monitoring bloodwork. It is very strange to think that a week ago I had 2 kidneys. And I really don’t feel much different.

Special thanks again to the Hothem family for housing me these past few days. Mary and I went to Snooz, in Denver prior to the airport – most excellent breakfast spot – but if you ever go – go hungry. Very hungry! Now onto that pile of mail…..

Fully cognizant…

I think.

6 days post-surgery and I’m done with the vicodan. I tried going to 1/4 of my dose and still felt all fuzzy in the head, then took a 1/2 dose before bed last night. I was up most of the night with cold sweats and nausea. I don’t have enough pain to justify the side-effects. So today’s plan is to go cold turkey and take some tylenol before bed. I really don’t have significant pain, more discomfort and I think by just listening to my body, I can manage on Tylenol. So, I just did another 2 miles on the treadmill and worked up a sweat for the first time in over a week. 🙂

Back to the whole experience of donating a kidney and what to expect. I think what I’ve learned is that its really subjective and there are a lot of parameters that go into it. I really had no expectations other than I knew my belly would be carved up a bit, I’d be missing a kidney and there might be some pain. The nausea, dizziness, iv’s, catheter – those were all foreign concepts to me. I described the whole immediate post-op experience a couple days ago and that really felt like a breeze (other than the bed ride over bumps!), I kept waiting for the bad part. The evening after surgery, I pretty much felt out of it – well drugged, with a pain push button in hand (which I kept losing) for anytime I felt discomfort. At that point, my diet was still ice chips and water. Which was fine until I heard Lisa had moved on to broth and jello! Actually, that didn’t sound much better to me either. But that night, I was checked, prodded, bp measured constantly. Oh – and they were worried about my urine output – so someone would come in hourly all night long to wiggle my catheter to be sure it was working. Lovely…. Moving hurt. They wanted me to shift off my back at times, but moving onto my side was rather painful. There are also orders at this point to work on deep breathing and coughing. I could handle the deep breaths – coughing – no. The suggestion is to roll to your side, double up a pillow to compress against your belly and cough. I was really, really bad at that. It just hurt. This is all to keep your lungs clear and hopefully prevent pneumonia. I made it through that first night, but with very little sleep. It felt like every time I dosed off – the nurse or aide would come in. And because they were worried about my lack of urine output – I started worrying. How could Brutus be working and the one left (who remains nameless) not be performing up to par?

On Friday morning came visits from the surgical fellow and resident team, typically a whole slew of really young people would walk in my room. By the end of the stay, I found these visits to be quite a joke. They were pretty much my assessment prior to the surgeon making rounds. The assessment lasted all of 2 minutes how are you feeling, how is your pain. The first day they also looked at my incision sites. (this was the only time a physician did so while I was in the hospital!). I did have a lab draw on Friday to check my creatinine which was a bit high, but that was expected. About 2 hours later the surgeon rounded with same flock of fellow/residents. He spent even less time in the room – rather a cold experience. But I managed to get approval for cath removal and move to oral pain meds. The pain pump med was causing me to itch. I was fairly convinced I had bed bugs. I guess this is a normal side effect.

So Friday’s milestones were that my cath came out, I moved to oral vicodan and I started having goals of sitting in a chair and then going on walks. I was still wearing a pulse-ox and heart monitor, and had my iv liquids so walks were cumbersome, but it felt good to be up and about. Breakfast and lunch on Friday were broth, sprite and jello (yummy!); and I progressed to solid foods by that evening. My choice: toasted English muffin with peanut butter and hot chocoloate!

A quick update on the dogs – I have been having trouble reaching Michele from Denver Dog Works so wasn’t exactly panicking but getting kind of concerned. I spoke with her earlier today and it seems like her emails aren’t getting through to me. Both dogs have been on a hunger strike – they will only eat if Michele puts a dab of canned food on their dry food. Gabby is catching on to training, Brin is being Brin. One day he cooperates,the next day he is too good for the trainers. Michele is trying to get a picture to get up on Facebook, but is faced with 2 dogs constantly in action. November 8th – when I get to see them again, cannot come soon enough.

Post-op Day #5

Today was my first full day home.  It is good to be home although would prefer to be feeling better.  I don’t know why, but I really thought I would be much perkier when I got home.  I still feel like this has kicked my butt.  Part of the issue is the meds- I am currently on 3 immunosuppressants and the prednisone especially is just the pits.  I am on a moderate dose now and hopefully will pretty quickly be able to titrate down to a lower dose, but it does make you feel weird. Sort of like your body is racing through time even though you are standing still.  It also makes it pretty hard to concentrate and to make decisions.  I have also tried to not take any pain medicine today to somewhat clear my head, although think I need to be a bit more liberal tomorrow.  I had the last of the scheduled plasma exchange treatments today. My labs so far are still looking good – no evidence of recurrence of the HUS and Brutus is working well.

I have been trying to figure out how to put to best use all the wonderful offers of help for the babies and me.  I think during the week, we are in pretty good shape with Vilma having primary baby duty.  Over the weekends, we will probably have a few shifts – around 10:30-2 and 4-7:30 or so, where if we can get help with the babies it will give my mom a bit of a break and allow her to do things around the house etc.  I know we have volunteers already – thank you Caz and Karen for collecting, and hopefully we will have a few minutes tomorrow to go through the lists and nail down some times.  Thank you all for your offers.  It might take a little while to get this right – so flexibility is appreciated.  It will be most helpful to take the babies for a walk and keep them entertained. I am not sure I will be up for much in the way of visiting.

I go back to clinic on Thursday for labs and further evaluation.  My red blood count is pretty low – they were going to transfuse me a couple of units of blood before I left but we decided to hold off.  It may be a good idea at some point though to help with my energy level.  Off to bed!