I'm making gradual progress

Its now been two full weeks and one full day since surgery. For the most part, I am feeling fantastic. But there is one small issue I am dealing with....orthostatic hypotension. This is the feeling you get when you are crouched down and you stand up too fast and then get dizzy. Its happened at one point or another to nearly everyone. Since the surgery, its happened to me every time I get up, whether I'm sitting or lying down. The standard advice is to get up slowly, but I am getting up slower than before the surgery because of my incision. And at the very least, I am certainly not getting up any faster. Its so concerning to me that I called my care team. My nurse Nancy brought it up to my nephrologist and they both agreed that it is "weird". My labs are normal. The doc suggested that its possible that I'm not eating enough salt. Hmm. So from now until Tuesday, I have been advised to increase the salt in my diet to see if it makes a difference. Bring on the chips!!

Other than that, I am feeling great. I went for my second bike ride on Tuesday (17.5 straight miles!) and today, I swam 1200 yards. The biggest difference is that after my workouts, I feel wiped. Most normal people feel energized after a workout, but when I finish a workout (and I use that term gently, I'm hardly "working out" at my normal level), I feel super tired. And I did expect that, but its one thing to expect a sensation, and its another thing to actually feel it.

12 days out and I'm back!

I rode 18 miles today :). Not fast, and we planned a mid-point soy chai tea latte break, but I did it. Greg and Johnny were my noble escorts this morning as we left Somerville at a blazing 13.5-14 mph pace and rode out the bike path to the Ride.Studio.Cafe in Lexington, which is 9 miles from home. We sat and had lattes, then I rode a bit up the road to surprise my LUNA teammates who were leading a 37-miler at 10am. It was nice to meet some of the ladies who we are helping train for a century later in the summer. It was great to see them all.

They took off on their ride and Greg and I headed back to Somerville (Johnny went ahead of us). I was feeling good on the road back until about two miles to go. My legs felt pretty tired and flat. But not so flat that I couldn't finish! But it did raise my awareness to just how tired I really am. Three weeks ago, I ran 29 miles.....gah......now I'm pooped riding a slow 18. But I will improve quickly, I just know it.

Beyond the fatigue, the only other challenge was the bumps on the road. OUCH! They are bothersome in general, but with a 12-day old six-inch gash in your gut, they really smart! I stood up for pretty much every bump, which meant I stood up a lot.

I had told myself that I would take two full weeks off before I returned to activity. So I get a big "F" in physical restraint, but my doc said I could get back into gentle cardio "as tolerated". Apparently he doesn't know how much I am willing to tolerate before I throw in the towel :).

Day 10...getting strong!

I had my follow-up appointment with my surgeon yesterday and he said I was doing well and looking strong. Yeah! I've been progressing my walking distance each day and what's better, my time has been going down, so I've been walking further, stopping less and going faster. Mind you, my pace is still pretty slow. To illustrate this point, read about my morning outing: I had to go to the supermarket to pick up soymilk, so I decided to venture out on my own. I grabbed a cart, flopped myself over the handlebars and pushed my way through the grocery store. I was walking down an aisle and I hear "move it!". I turn around and behind me is a cranky 137 year old man in a motorized wheelchair who was pissed that I was walking too slow. What's most ironic about the situation (beyond my age and fitness level) is that my research at MIT has centered around building an empathy suit, which helps younger individuals feel physically older, and helps them to empathize with their challenges (theoretically, of course...) When we calibrated the suit last summer, we found that when folks in their 20's put on the suit, they are as physically mobile as folks in the 70-79 y.o. range, based on standard norms of physical function. While my research is typically well received, here and there the critics will say "well, you really DON'T know what it feels like". YES I DO!

Anyway, the only disconcerting piece of my recovery thus far has been the dizziness. When I get up from the couch, I get uncontrollably dizzy, to the point where I feel like I am going to black out. This has been happening since I got home, and while I am cognizant that its not wise to get up too fast from a lying down position, I don't think I am getting up any faster than before the surgery. I mean, I can't, I've got three holes in my gut, so it hurts to get up fast! They took some labs from me yesterday to see what might be going on. Hopefully its nothing, but it is something I would like to pass.

Its been one week since surgery

And dammit, I got my period last night. The normal misery that a woman experiences once a month is certainly magnified when one is recovering from surgery. But it sucks even more when one is down a kidney. Why? The kidney is involved in red blood cell production. So getting your period reduces your blood count all that much more.

The kidneys produce EPO, which is the hormone that stimulates red blood cell (RBC) growth. (It is also the illegal doping product that many endurance athletes have been caught using in the past....). Since I am in the acute recovery phase, I am producing 1/2 the amount of EPO that I am used to producing. And I can feel the difference! When I walk up and down stairs, I feel like I am living at altitude.....that feeling of "holy shit I am out of shape". My heart races with gentle bits of activity and I get tired pretty easily. I find myself occasionally gasping for air just like I have found myself in the past when I've been at any significant altitude (+9000 ft). The reason for this is because the red blood cells deliver oxygen to the tissues. My oxygen carrying capacity is acutely reduced because for the past week, I've had half the ability to produce RBCs. This is why people who have kidney disease feel so tired all the time....their ability to produce RBCs slowly decreases. Mine is just a result of the transplant.....and this will change. I've been told it takes about six months for my sole kidney to fully take-over responsibility for the functions of my entire body. I'm banking on the fact that I am pretty healthy and strong, so maybe it will be a bit quicker.

And note, this is just my understanding on what is going on, from what I know about kidney function. I am not a kidney expert by any means, I only know what I feel, so I have attempted to tie together what I feel with what I know.......

Day 6

So, I may have failed to mention that the night before the surgery, my wallet was lost/stolen. Of course, I didn't figure this out until 5:30am on Tuesday when I needed to be at the hospital at 6am. Ugh. I was able to muster up the energy to cancel the two cards I know I had in the wallet on day 2 post-op, but haven't really done much about it since then. Last night Greg took me to the mall to buy a new wallet. That was when I realized that I was NOT ready for public showing. Being in the mall was overwhelming and exhausting and I had never been so excited to make it home and climb back onto the couch.

Today, I have to make my way into the bank because they wouldn't replace my ATM card over the phone. Grrrr....REALLY?!? So that is my outing for the day.

My other plans for the day are to try and write down everything I think I had in my wallet that needs to be replaced and then maybe a short walk. Yesterday was a big day - having taken a long walk and a trip to the mall really took it out of me. Today is also Greg's last day at home with me, so it will be nice to just have some downtime with him before he heads back to work.

Recovery Day 5

Today is my second full day home. What a difference a few days makes. Yesterday was day 4 and my first full day home. That meant a lot more moving around the house and less assistance in getting up and down. I took it pretty easy and that seemed to be the right thing to do. I was also blessed with a few visitors, which helped the time pass.

I woke up today at 8am and took my painkillers, which promptly put me back to sleep. When I woke up again at 11am, Greg, Boston (our pup) and our friend Johnny (our former roommate) were going to walk to Bloc 11 to get coffee. I figured it would be great to start the day with a short walk. I didn't think I could go the whole distance, so I decided to join them for part of the way. When we got to our first uphill, I decided to give it a try. I had only been walking on flat ground and wasn't sure how I would respond. Uphills seemed to be OK! I kept on going until we got to the downhill. This was a bit more painful, but I figured that at this point, I was halfway to the cafe, might as well keep going (as there would be treats at the end......). I made it all the way! I was tired when I got there, but I did it! Each way is about .75miles, so in total, I walked about 1.5 miles in 45 minutes. And it felt great! (and as a side note, it also helped me go to the bathroom, which I am finding out is one of the biggest challenges to this recovery......the location of the incision combined with the amount of painkillers I am on make for an unresponsive/unhappy colon.......walk, walk, walk is the take home message here......)

I feel like today is the first day of "training mode". It is May 16, and I walked 1.5 miles in 45 minutes. In 3 months, I will swim/bike/run 70.3 miles. Two days ago, this felt like a completely ridiculous goal. Today, it feels more achievable than I could have imagined.

And on another note, my dad is getting out of the hospital today. He is doing great and his (my) kidney is working well. His levels have just about normalized and he hasn't shown any signs of rejection. It hasn't even been a week and yet things seem to be on the up and up.

The realities of recovery

This blog post may be filled with a little bit of "TMI" (too much information), and I debated how much I wanted to share. While this blog is intended to serve as a chronicle of my recovery primarily related to my goal of getting back into riding/racing, I also want to showcase the realities to those who are considering donation themselves. I knew a lot going into this, but there are certainly some painful and uncomfortable unknowns that have popped up and while it wouldn't have changed my decision to donate, it would have been nice to anticipate some of these things.

My last few blog posts were updated by cell phone while I was in the hospital, so I wasn't able to share much. This will also serve as a summary of those last few days.

The day of the surgery was probably my best day. The anesthesia was still roaming around my body, so I was constantly passing out. They had put me on a patient controlled Dilaudid drip (which means I push the button when I want some), which is a pretty heavy narcotic. One of the side effects is itchiness, and it had hit me pretty hard. I scratched my way out of recovery and into the next morning, so I didn't get too much sleep. Because I was so out of it, I didn't notice, but once it was discontinued, I stopped scratching. Greg was with me for much of this time and he told me that I was constantly scratching. Had I known that this was a side effect, I think I would have asked for a different narcotic (like Morphine) to be placed in my IV drip. It may or may not have made a difference, but it would have been nice to try. At the time I was thinking it was just itchiness from being in the hospital beds, or the pneumo boots on my legs, but not a side effect.

On day 1, they discontinued the drip and put me on PRN IV Morphine (not a patient controlled drip). Unfortunately, this meant that the nurses controlled when I got my doses. This didn't help to control my pain as well, so day 1 was a tough day.

Day 1 was the day that they took out my catheter and I was expected to pee on my own. And pee I did!! It took about 4 hours from the time when they took the catheter out and from when I could actually pee. That was an uncomfortable time! I could feel that I had to go, but my body was still numb from the anesthesia so I couldn't go. Ugh! But when I did start to go, I pretty much went on the hour. That was hard, because that meant that I had to get out of bed every hour to go to the bathroom. And since it was only day 1 post-op, getting out of bed was really painful. I have three incisions on the left side of my abdomen. The lowest one is my biggest one, probably around six inches long. This, in combination with a belly full of surgical gas, made for some constant sharp pains in my gut.

The surgeons use surgical gas to inflate your abdomen so that there is enough space for them to use their instruments in your belly with a lower risk of nicking something unintentionally when they remove the kidney. Otherwise, all of your abdominal organs just lay on top of each other, so the gas keeps them apart.

Day 2 was much of the same. Unfortunately, this was also the day I was assigned the nurse from hell who pretty much ignored me all day. Luckily, Greg was with me most of the day, so he helped me get in and out of bed when I had to pee. Later in the day, after one of my many walks around the unit, I started getting severe cramps in my belly after I returned to bed. I couldn't breathe, and that made me cry from pain, and all of this together made for a very painful experience. I called the nurse for more pain meds, but he ignored my request and then when Greg went out to yell at him, he told Greg "I've given her everything she has orders for, there is nothing I can do!". The MDs came in with the nurse (the MDs and NPs rocked, by the way) and listened to what I had going on. The MDs and I decided that a muscle relaxer would be helpful to calm down all the spasming in my belly. One of the downsides of being fit is that they had to cut through a lot more muscle than normal so the pain tends to be much greater than in the less fit population.

Later on the nurse came in to tell me that "when your boyfriend was yelling at me, I was trying to call your docs to see what we could do, so I apologize for doing my job". Jackass. Meanwhile, it was my friend Shelby who came to visit me who changed my bedsheets, the NP who had to come in later in the day to back-document all of my intake and output (since my nurse hadn't seen me all day, there was no record of my input-output and for a kidney patient, this is very important. And this is NOT the NP's job, it is the responsibility of the RN). He came back one more time at the end of his shift to give me a dose of pain meds and told me "I've taken you off my patient list". I got fired as his patient!! Which was a good thing, but wow, what a jerk.

The overnight of day 2 into day 3, I had a wonderful nurse who stayed on top of my pain meds and helped me control my pain. Finally. And since I was experiencing good pain control, I was able to go home in the afternoon! I was still experiencing a lot of pain from the surgical gas, but I had slowly started to pass the gas, so I was anticipating that this would continue.

We left the hospital and went straight to Walgreen's to pick up my meds. When I was walking around the pharmacy, I could feel that I had to poop. YAY! One side effect of narcotics is that your stools get hard, and in addition, the surgery itself shuts down your GI system, so pooping is one of the last functions to return. Greg and I promptly returned home so I could bunker down in the bathroom and go to work. Because my incision is where is it, bearing down is risky and painful. Starting at 5pm, I sat there and just waited....and waited....and pushed...and waited. This may have been one of my lower moments of recovery. I was impacted so badly that I couldn't go. And I couldn't push because it would have overstressed my incision. It was so awful that I actually spiked a bit of a fever, probably because my body was reacting to all the toxins in my system. Finally, at around 10pm after five hours of misery, Greg went to the pharmacy to buy a dreaded enema. Greg deserves a medal of honor for all that he has does for me thus far, but he really went above and beyond on Friday night. I don't know what I would have done without his help. Greg administered the enema, I let it sit for 15 minutes and lo and behold, after some pretty painful pushing, I was cleared. I know that this may be a bit more than you wanted to know, but again, I think its important for those who are consideration donation to be aware of the challenges. Looking back, I'm not so sure what I could have done differently to prevent this, but I am sure if I thought enough about it (and asked the right people), there could have been some dietary changes I could have made to have minimized the impaction.

Once I took a shower (one of the best ever...) I went to sleep in my own bed. It was the first time I had laid down flat, so it was pretty painful at first. But it was nice to start back my normal routine again. I think things will only get better from here....:)

I'm on my way home! I want to thank everyone for all your well wishes, kind words and gestures over the past few days and weeks. Its been a tremendous help.

Day 3 recovery. I'm more pain meds along with a muscle relaxer and that seems to have helped me a lot. I may even get to go home today!

I'm in a lot more pain than anticipated so I will be in until at least Friday. I had an awful nurse today who ignored me all day - it was AWFUL. More later.

Day 2 of recovery. Ouch. The surgical gas isn't moving yet, so the pain is still pretty severe, all the way up into my shoulders. Just gotta keep walking!

Surgery was a success. I'm definitely in a lot of pain, but everyone says I look great, so I'm hoping I recover fast. I've also heard my dad is doing well. Yay!

I'm sitting here in my johnny, getting ready to go. Other than being hungry, I'm feeling good and ready to go!

24 hours to go

Its my last day with two beans. As such, I intend to live it up. Now that intention may sound morbid, but I believe that any reason is a good excuse to treat yourself well. I'm starting my day getting a little bit of work done (I teach a graduate course at Tufts starting June 7, so I want to be ahead of the game), then I am going for a mani/pedi, then I have a two-hour massage scheduled and I will top off the day with a mellow mountain bike ride with my LUNA Chix teammates and friends. Sweet day :)

I'm also going to be packing myself a bag for my hospital stay. I was told by my "new" friend Kelly (a fellow living kidney donor) that I should be prepared with some items. My packing list includes:
-sneakers for walking on the MRSA laden floors :)
-bra (I just don't want to be walking around without one....)
-Magazines and books
-Laptop
-Phone charger
-LUNA snacks (hospital food MAY get old......)
-My own tea (Lipton doesn't cut it, I need my foofy herbal tea)
-Hairbrush, deodorant, etc (don't to offend my visitors, or myself!)
-And I may just bring my own pillow to the hospital. Maybe that is a little high maintenance, but I'm OK with that.....I've been told I am going to feel pretty uncomfortable that first night, so I might as well do my best to reduce the discomfort.

I kinda feel like I am prepping for a vacation! And in some ways, I am! When was the last time I was offered breakfast (lunch and dinner) in bed and had free reign of the remote control 24/7? And was expected to relax? And while I won't be served margaritas pool-side, I will have a controllable morphine drip.......I'd say that's a good second prize :). And while I don't mean to make light of the situation, I believe that you have to look at the good side of any situation you are in. Every situation presents itself with opportunities and challenges (no matter how terrible a situation may appear), and I choose to see the opportunities.

Preparation.

There is a lot of preparation involved with donating a kidney. First and foremost, you must ensure that you are adequately matched with your recipient and that you are healthy enough to donate. This involves many, many appointments at the transplant clinic. First, you get your blood drawn, and they cross match that with your recipient. Once you are a match, you decide whether or not you want to proceed to be the donor. In my case, I was one of two matches. Both my sister and I were matched to my dad, but her and I decided that I would be the best donor because she is a massage therapist and needs her body for work, more so than myself. I am currently in school and have much more flexibility to take time off from "life" to recover.

Once you are identified as the donor, you proceed with the "Mother of all Health Assessments." Your assessment includes the following:
- a 24 hour urine clearance test, in which you must collect all of your urine over a 24 hour period and then you bring it into the hospital for processing, which reveals your kidney function.
- Blood tests - LOTS of blood tests. Luckilly I have garden hoses for veins (that's what one nurse told me) so getting blood drawn is a cinch. At my last blood test, my phlebotomist didn't even use a tourniquet!
- EKG
- Chest X-Ray
- CT scan of your kidney with contrast dye
- Meetings with a nephrologist, a psychologist, the surgeon and my donor coordinator nurse.
- I also had to have my annual physical, with a pap smear and if I were over 40, I would have needed a mammogram as well. (But I'm 35, so I didn't need that).

Finally, once this is all done, you are cleared, and you are ready to go, you schedule the surgery and then have to report to the surgical suite and the transplant unit for pre-op procedures. This day-long event was yesterday. At this appointment:
- They draw more blood (they actually had to draw from me twice!)
- Another EKG
- Another Chest X-Ray
- Anesthesia intake with the NP
- Surgical interview with an RN
- Meeting with the surgeon
- Meeting with the donor coordinator nurse.

Throughout the process, you learn a lot. As a future NP (one more year!), I asked a ton of questions and each staff member I dealt with was so patient and so helpful in helping me understand the process.

A larger part of the preparation period for me has been to get myself in great shape. To be honest, I've never really been in BAD shape (not in a long time at least...), but I wasn't feeling my best. I focused on eating better, training in a more well-rounded manner and setting a goal event for the weekend prior to surgery (this was the 13Relay I ran last weekend). In the process, I dropped 8 lbs and feel as though I have a handle on some of my bad habits (like too much sugar and diet soda!) that I wanted to break before having to sit still for an extended period of time. I've always been able to get away with some of my bad habits because my exercise volume is pretty high, but that will change quickly, and I didn't want to look back and say "I stopped exercising but my diet didn't change, and oh shit, I gained xxxxx lbs". That happens to a lot of athletes who retire and then take an extended break from exercise. Next thing they know, they've gained weight and feel guilty for letting it happen. It happened to me once. I had broken my ankle my senior year in high school. I then had four surgeries over a two year period as a result of the ankle fracture. Fifty (50!!) lbs later, I was fat, out of shape and miserable. I was a fat kid and high school athletics helped me overcome part of my weight problem. Or so I thought. Here I was, a sophomore in college, and my weight problem had returned with a vengeance. It took me YEARS, but I overcame it again. I never want to have to fight that fight again.

So now I sit, poised with a much greater body of knowledge, a much stronger sense of discipline, and future goals that I decided upon in my preparation process. And while my fears of a historical repeat still silently mull in the back of my mind, I have a much greater sense of confidence in myself that I was ultimately come out stronger from this experience, physically and mentally.

Tapering down with one week to go

Sort of.......

This past weekend, I ran the 13Relay with my pals at the Training Room (www.trainingroomboston.com), and ran from Quincy to Provincetown with 5 friends. My run legs were 8.7, 11.5, and 8.6 miles, at 7pm, 3:45am, and 2:30pm and I averaged a 9:24 pace over the 28.8 miles. We came in 2nd in our category, thanks to my super speedy teammates (we nicknamed me the turtle)! I felt surprisingly good, so on Monday night, I went out for a fast MTB ride with my LUNA Chix teammates (www.teamlunachix.com). I have to be sure that I am well rested and not over-trained, because too much exercise could result in a higher level of creatinine in my kidneys and if it is too high, it might postpone the surgery since they draw levels on the morning of the surgery. With one week to go, it is time to drop the intensity (rather than the volume). I have to teach four spin classes, and am planning on 4 rides with the Chix (2 MTB and 2 road), one trail run and 1-2 lifting sessions in the gym. When I think about it in my head, it doesn't seem like a lot, but when I read it, YIKES! That is a lot! I plan to go easy on the spin classes and maybe cut out the trail run if my body is feeling tired.

One week until go time!