Torn-The Good and Bad of our Healthcare System

This is kind of an unscheduled post. I was having a great conversation with a good "interweebs" friend of mine last night and again this morning about my blog. She said my posts are starting to remind her of her experiences with healthcare. Her bad experiences. And she lives in the United States.

While she wasn't in anyway criticizing what I was saying but it struck a giant chord with me. It's been bothering me the last week or so as I've written many of these posts and in doing so have re-read my journal and iPhone notes about my hospital experiences. It does sound more negative than positive. And I hate being that person, although I do believe I've been objective in communicating what my experiences were. I have not gone out of my way to be negative (I've just been honest) and have tried to highlight the great people and treatment I've had along the way.

It's tough and I've grappled with these feelings from the day I was admitted to the hospital as a kidney donor. I love our Healthcare system. I am thankful for it, grateful and appreciate we are very lucky as a country to be able to sustain such a system. Sure, in places like the US where healthcare isn't "free" there might be pockets of extraordinary healthcare but that is often at the expense of other pockets of their communities that are almost criminally under served. I want to be clear-I believe in our system and how it works. There are always ways to grow and improve any organization and I don't think we should shy away from that.

I did however receive some pretty craptastic care and attitude at the hands of medical professionals who are a part of that system. I don't want to point fingers but it was more often than not the nurses and the administration. I don't know if that was a result of something in our healthcare system that does not allow them to excel in their professions or if its just a case of me having bad luck and getting a few bad apples. I'm also not sure if my somewhat "foreign" presence on the trauma ward was part of the cause of the sometimes bad care I received. If that is the case, that is an easier fix with the development of a stronger, more efficient living donor process which I know the Living Donor program is deeply committed to.

I guess I just didn't want this blog to become a bitchfest about our healthcare system as a whole or make it become about the crappy treatment I received from time to time after donating Leftie. I especially don't want to deter other donors from donating thinking they will have the same treatment. I know in my case, the Living Donor program is very interested in all the ups AND downs I experienced (and asked me to be sure to blog about them) so that they can take steps to fix them for the next guy or gal who wants to donate. And I really do believe that they will do everything in their power to make those changes. They are really great people and their hearts are in this 100%. And to me that counts for a lot.

So please don't use this as a tool to blast our healthcare system and say that its broken o it doesn't work and we need something else. And certainly don't be deterred by some of my bumps in the road if you want to donate in Canada. It still is worth it and you will get the care you need.

That being said if you are from Alberta Health Services and/or Foothills Hospital-you aren't fully off the hook. I want you to do well-I am rooting for you. Take my experiences and see what you can do to make it better for the next person in my place or for the next patient in general. Remind your people why they do what they do. Remember we all end up as patients one day.

Thanks.

One, Two, Three, Pee

After the glorious moment that the catheter came out, my favourite nurse told me the downside was that for the next 12 hours, they had to measure my pee-doctor's orders. The put a "pee catcher" in the toilet (the same kind I had when I did the 24 hour urine test). Every time I pee'd I was supposed to buzz the nurses station and tell them to "come measure my pee". Really? Apparently so. She told me they knew they had to do it so they shouldn't give me a hard time.

Off she went. In the two-three hours left in that shift, she came in a few time on her own to check without me having to call (remember she wasn't even my nurse).  Maybe this wasn't going to be so bad. Then shift change happened. New nurse-one I don't think I had had before. She introduced herself, writing her name on the Alberta Health white board. I told her I had, in fact, just pee'd and invited her to measure it. She did and wrote it on the white board. She told me if I didn't feel comfortable saying "come measure my pee" to the nurses station, just to tell them I needed to see my nurse. Great! That sounded easy.

Now remember I'm still drinking a ton of water and juice as per the doctors orders. I would say on average, I was using the "facilities" every hour (plus I was nervous about it so I think I was going more). After the first time I have to go after our initial introduction happens, I call the nurses station:

"I pee'd-can you come measure it?"

Annoyed silence from whomever was on the other end followed by "Okay we'll send your nurse". I went back to reading my magazines. An hour went by. I had to go again. Hmmmmm. Still no nurse. So I buzzed the station. "Can I see my nurse?"  Sure I could. Another 30 minutes went by. This was a bit ridiculous.  I went in the washroom and review my initial deposit. Based on the number written on the whiteboard I knew which of the measurements she was taking. I recorded the number on the board, dumped out Round One and moved on to Round Two.  I was a little worried I'd get in trouble so I left it in there, thinking she'd show up soon. I waited awhile and decided to buzz the nurses station one last time even though it stressed me out. "We'll let someone know". It's not like they said she was busy or even seemed to think this might be a repeat request. Just that they'd send someone.

Now I know from my numerous laps around the floor past the nurses station that tin addition to a least one floater for the ward, each nurse is assigned to three rooms which would give them three to six patients (but in most cases more like three). There had been no code clues and no code 66s (I learned the night before the kidney donation surgery that meant the nurses think the patient is going downhill but not at a code blue yet). So I am not sure what was going on. All I know is that our first meeting at shift change was our last till after 10pm (right before shift change again). She came in and saw the list (including her original one) of my seven pee amounts. "Oh good.  Someone came in and counted-I need to record that on your chart". I tilted my head to the side and gave her a look. I saw the wheels turn in her head. She said "Oh.......did...you record them?"

Yes, yes I did. DIY healthcare.

At least she said thank you. I was one of those moments I wished very hard that they could be in the patient's shoes for a second and see how things are. Awkward. It wasn't a hard thing for me to do but should I really have been doing it?

Turning the Corner

My Day Three post breakfast nap was definitely a turning point in my post kidney donation hospital recovery. I would give credit to the red Jello except I didn't eat it.

I woke up to find myself surrounded by almost the entire Doctorpalooza  crew, smiling away at me. It was the first time in my stay at Foothills where I had been "caught" sleeping and hadn't woken up to people entering the room. Dr. Y seemed to be in charge that day vs. Dr S or Dr. W. I kind of wonder how they determined who was alpha doctor each visit-rock, paper, scissors? Dr Y did the usual check of my incisions, asked the gas and poop questions. He asked how my pain was and I told him my arm hurt way more than anything related to the surgery. They all kind of leaned in, glancing at it and there were a few cringes.They told me I should be off the morphine now-and I was. I did ask them why the nurses kept offering it to me if I didn't need it-they just grinned and didn't really answer. Dr Y then got a very serious look on his face, paused and then asked me why I hadn't eaten my jello. "Really?" I asked, "Do you want it?". They all started to chuckle and he waved his hands, backing away from the tray. "Exactly" I said. More laughs. 

Then he gave me the best news ever. I was allowed to shower, the IV could probably come out (they had put a needle in my hand after the other arm failed but hadn't hooked me up to anything) and the catheter could most certainly come out. Yahoo! On top of that, they were buying my "If you want me to poop give me more than consomme and jello" argument. While I was still going to get that for lunch, I was going to get to have dinner! I mean it was still going to be hospital food but I had learned to appreciate that some levels of food were better than others.

Doctorpalooza left. I was already feeling a million times better just knowing I'd soon be free of all the machines and gadgets. A nurse came in later and I asked her when the catheter was going to come out. She looked at me blankly. Seven or eight doctors and not one had communicated this to her or put it in the system. Awesome! She did have good news though that someone was going to come in and help me with the shower and also change my sheets. 

Moments later that person did arrive. Now, I have never felt fatter, more bloated, greasier, dirtier-I think you get the point-as I did at that moment. I'm also normally a fairly modest person-even if you are a nurseor a doctor, I'd still feel weird being naked or partially naked around you. But as this lady helped me out of was most certainly a stinky gown, and helped me turn on the shower, passed me the shampoo etc from my makeup bag-I didn't care. I was going to get to wash my hair! I was washing my face! I didn't care what she saw or how awful I looked. I was clean. Another huge uptick in the recovery status. If I could have done a happy dance I would have.

Feeling fresh and new I did several laps of the floor that day, each one bringing me less discomfort and higher spirits. The catheter didn't end up coming out till mid afternoon. The awesome "floater" nurse took the time to call the doctor after 2PM when an order still hadn't been put in the system. She said he razzed her a bit because he is a "surgeon" and they don't normally deal with those things but she pointed out to him he was the one to tell me it was coming out and his name was on my arm. Good woman! She came in my room waving the tools to help her take it out. I think she was as happy as I was. She also took the time to shut my door to make sure no one barged in on us-that was a nice touch. When she was done I yelled "I'm free". I think we just about high-fived.

One thing I was really reminded of in this process is how awesome the little milestones in a journey can be and how the simplest things like a shower, a few laughs and some nice people can make such a difference in how you feel.

My Marshmallow Man Arm

I woke up day three feeling off, around 5AM. I was hugely uncomfortable. I think terrible was the word I used at the time to describe it. I tried to pinpoint what was making me feel so off. My abdomen had a small bit of pain-nothing to write home about though. I hadn't showered it what felt like an eon but I was pretty sure that wasn't it either. I felt heavy, achy and sore all over but especially on the left side of my upper body. I adjusted the bed to try to get more comfortable. AS I was doing that I realized what the problem was. My left arm was extremely swollen, to the point it was numb in places, with pins and needles in others.

Remember the efforts they took to get Righty working a bit harder? Well sometime after the diuretic was administered and the new bad of IV fluids was hung, my IV failed. The better part of 1 litre of fluid had drained into my arm overnight with nowhere to really go. My arm looked like it belonged to the Marshmallow man.

I couldn't bend my fingers or wrist. My whole hand ached-the kind of bone ache you get if you put your hand in icy water. I couldn't really grip anything or put weight on my hand or wrist (kind of key when you are trying to sit up after abdominal surgery). Conversely my elbow and upper arm were numb. I could bend it somewhat but couldn't really feel it. My shoulder and collar bone area hurt as well. I touched the skin-it was burning hot although wasn't pink or anything. You could feel the heat coming off of it.

At this point in my stay I had developed an aversion to buzzing the nurses station because it usually meant I'd get a grumpy voice on the other end (in one case on nurse actually was angry at me for accidently hitting a button twice). It also almost always meant nothing would happen (i.e no one would show up or would take an hour plus to show which is about the same thing when you are in a hospital bed). What would I say anyway? I think my IV has failed? No they wouldn't like that because that would be self diagnosis. My arm hurts? That would likely have the same response rate as a request for ice chips. It was probably stupid on my part but I waited another hour until shift change before doing anything.

A little after shift change a nurse showed up-she was the super nice one who had pushed me to the nurses station the day before surgery. She was just checking in-she wasn't my nurse (was a floater for the day) but thought she'd say hi and see how I was doing. I told her I was okay but something was wrong with my arm-maybe the IV had failed? She came over to check right away. She took one look and agreed that was exactly what had happened. She immediately took steps to stop more liquid from flowing into my arm. She couldn't believe how hot my arm was-she had never seen that before. She was also surprised my arm hadn't been noticed earlier. I told her I wasn't checked on a whole lot so that was probably why. She shook her head and said compared to some of the other patients on the floor and the nature of their injuries, I was a walk in the park. She went on to acknowledge and confirm some of the feelings I had had about my level of care-I don't want to get into details because I'd never want to see her get in trouble for speaking the truth. It made me feel better to know that my concerns weren't all in my head.

Depsite the IV being out, my arm still felt terrible and it was really impacting how I felt overall. My spirits were buoyed however by the arrival of my breakfast (vegetable consommé and red jello). (Okay not really!)

At least it was red Jello and not lime. Things were looking up. And it was time for a nap.

Righty Takes the Afternoon Off

Late in the afternoon of Day Two, when the daily handful of doctors made their rounds to me, two of them became a bit concerned with how Righty was adjusting. Dr. W (the nephrologist) asked me if any nurses had emptied out my catheter bag at some point since the morning. I couldn't remember-maybe? Had I known I was supposed to keep track I would have.

None of the doctors said anything further on the subject. However later in the evening after visiting hours were over, my nurse came in with some extra saline type solution. "the doctors are worried about your output-your kidney might be a little slow because of the drugs etc". She basically was under instruction from one of the surgeons to give me a ton of liquid via IV, then later would give me a diuretic and more liquid until Rightly stepped up. For those of you wondering, a diuretic is anything that promotes the formation of urine by the kidney. (The word "diuretic" comes from a combination of the Greek "dia-", thoroughly + "ourein", to urinate = to urinate thoroughly). I knew I had been peeing but I guess it wasn't enough. The nurse hooked everything up and off she went.

The overnight nurse came a few hours later with the diuretic (in another IV bag) and some more fluid.  She seemed surprised at that point that the extra fluid hadn't really made a difference but at the same time offered me more morphine (one of the contributors to the slowdown). I declined, she left and I lay there awake for awhile wondering if Righty was okay. I gave her a pep talk and soon thereafter fell asleep

We need not have worried. The diuretic was like a cattle prod to my kidney. Within two hours I was awakened with an extreme urge to pee (as my mother would say, 'my back teeth were floating'). I wondered why I was having that urge and discomfort as the catheter should have just done its thing while I slept. After some consideration,  I guessed I was maybe sleeping on the tubing funny and it might be slowing down the flow.  I carefully stood up, thinking a little gravity might help get the pressure feeling to subside. Did it ever! I think I stood there for over 3 minutes feeling things drain a bit more. Finally I was much more comfortable and I went back to bed. The nurse came in an hour later because the IV pump alarm was sounding and she also wanted to see my "output". I heard her say "Holy shit" in the dark. She was bedazzled my my output-understandable really. I looked at her and giggled. She saw I was awake so she said "Your right kidney is clearly working fine now". Phew. She hooked me up with a new bag of liquid just to keep things moving.

I let Righty know that was the last break she was allowed to take for a least another 65 years.

Day Two-Let's do lunch...or dinner?

There are five basic things that you need to accomplish post kidney donation in order to be discharged from hospital. You will see they are all very much inter related-some will not work without the others happening.
Here they are in no particular order:

You need to be passing gas: this is probably the first thing you can easily cross off your list as you don't have a lot of control over it. All that co2 that goes in during surgery eventually will make its way out...

You need to be up,walking around. This is definitely required because it helps get everything going-the tooting , the "outputs" and helps with the breathing as well. Day two I started off feeling a little sad and just kind of "bleck" in general but as soon as I was up walking around I felt 1000 times better in all ways. I was shaky at first and appreciated having Charlie there for support.

You need to be peeing "enough". I don't know what "enough" actually is. As of midday, day two, I was doing okay but not great in this category-not enough for them to remove the catheter yet. (PS...walking laps with a catheter dangling between your legs is both the most bizarre feeling and somewhat embarrassing even a hospital setting. I was thankful for the giant mu-mu gown they had found for me to use as a housecoat as it meant you could hardly tell what was going on under my gown). It's too bad there aren't pictures really.

You need to poop. Basically quantity, quality or proof arent important here. If you can say that you did, you get the check mark, no questions asked (unless Dr. S is the one doing the asking then he seemed more interested in getting output info). However ice chips and IV fluid with a dash of apple juice and a twist of powerful meds for 2+ days doesn't really motivate one's digestive system. I'm just saying.

You need to eat and tolerate it. To me, the second goal depends so much on this. I was ready to eat something the morning of the second day. I had thought as a result of what Dr W had said in the morning I'd get something to eat at lunch but nothing ever came. When the evening nurse started at 4 I asked her when I might be able to eat and she said according to my chart I should have started at lunch.  But when Dr W showed up after 4 (with Dr. S, Dr. ?, another doctor from the original Doctorpalooza group and some other medical lady in tow), he said dinner was always supposed to be the first one. And to not eat too much.

I have no doubts Dr. W was being totally serious when he told me not to eat too much for dinner. But when dinner is a bowl of chicken bouillon, and apple juice and a cup of really rubbery lime Jello, it's easy to see there is a joke in there somewhere. Beggars can't be choosers I suppose but it was so unappealing I really had issues even attempting it. I ate the consume until I couldn't take the blandness any more. I tried valiantly to nibble the jello but I just couldn't do it-the texture was just not working for me and the flavour was very strange. It doesn't even strike me as being something with any nutritional value? There might "always be room for Jello" but not in this case.

The best  news of day two was that Dr. S thought it would be good to take the surgical bandages off and just leave me with the steri-strips.To me this is a good thing because it means you are healing right? He pulled at them gently at first but then ripped them off in true bandaid removal style. I think I must have glared at him a little because he kind of smirked back and said "that's the part that hurts the most".

Clearly he doesn't have to eat the food :)

Root-a-Toot-Toot

One of the things we all (well mostly all of us) grow up being taught is that passing gas, while natural, is kind of taboo. It's embarrassing, some consider it to be bad manners and we won't even get into how the smell of a bad toot can both clear a room and invoke hostility. If you are female, it's especially bad form-there have been many a TV episode plots based solely around the horrors of farting in front of one's significant other.

The average, everyday, healthy person produces about a half litre of gas a day and needs to pass gas around 14 times. Men seem to do it a little more and seem to care a little less. 

Most laproscopic abdominal surgeries require that the patient have their abdomens pumped up with gas. Carbon dioxide causes the abdomen to swell, which lifts the abdominal wall away from the internal organs. This gives the doctors more room to work. However after the surgery is over with, this will leave the patient with the gassiest stomach imaginable. Over time, the body will absorb some of the gas itself and will also expel it via good old fashioned tooting.

Early in the morning the day after my surgery I could feel my belly start to rumble. I was feeling incredibly bloated. For the ladies, imagine your most bloated point in your monthly cycle-the day where a baggy dress or track pants are the only thing you felt remotely comfortably in. You know how you can sometimes feel like you suddenly have a Homer Simpson gut? Well imagine looking down and you actually do-and it's all gas.

In the case of what we'll call "surgical gas", it can actually be quite painful and for some people can go on for days, weeks, even a month or so. You have strange sharp pains even in areas outside your belly, from your chest, to your shoulders to your collarbone area. It can make you feel nauseous, dizzy  and crampy. Some people have reported that the pain are so severe, they are certain they are having a heart attack. In my case it never got that bad, I think because I tried to move around as much as I could and do the breathing exercises (which to me seemed to help things get moving) as often as possible. I felt like a beached whale and was uncomfortable but not to the point of agony.

I knew that walking around would help so as soon as I was able to do it, I did as many laps of the floor as I could (taking breaks when required). I'd do a circuit, up the hall, past the nurse station and back down the other hall in a loop. The whole time I was walking I could fell my stomach tossing and turning as gas bubbles shifted. Usually after one lap, I had a feeling I could "produce" a little gas.  So I'd wander into my room and do a few extra paces. ROOT-A-TOOT-TOOT. HISSSS. KA-POW. BURRROP OP OP. POPPITY POP POP POP. 

The first few times I'm sure my face reddened as I looked around my empty room. Open farting like this went against every bit of etiquette I was raised with. "Excuse me" I said out loud. PFFFFFFFFTTTT. Another hissed its way out, almost in response. I giggled. This must be what it's like to be a 12 year old boy. Once the barrage of tooting would slow down and stop, I'd do another lap of the ward. Rinse and repeat. Every lap brought more farting, less discomfort (marginally) and more giggles. There is something liberating about medically required farting. I couldn't help it and I was SUPPOSED to do it. Whenever in my regular life would I ever get to be this way without it being bad manners and "not what a lady should do"?

Never.

For the next few days, every root-a-too-toot elicited an audible cheer from me. In my head, every one was getting me one step closer to feeling better and going home (passing gas was one of the four things I needed to have completely before I could be releases). If Charlie and Charlie Jr. were visiting and I had the urge to pass gas, I'd walk into the bathroom away from them but only after I announced matter-of-factly that I had to toot/fart/cut the cheese. 

And once in the bathroom I'd still giggle and cheer.