Waiting, again

I'm stuck thinking about the waiting...if it's this hard for me..what must it be like to know part of your body is dying. And there is hope for a new part, somewhere out there. And you can't get to it yet. Not that it isn't offered, but there are so many hurdles to be jumped first. What is it like to wake every morning, wondering how well you body, your kidneys are going to do today. Will they function ok, will they get worse. How will you feel? Tired? Or just unwell? and how long will this drag on...and the biggest fear I think is, will I wind up on dialysis? and what will that do to my body.

Strangely, there was a book about my favorite topic, The Camino de Santiago de Compostella, called "Fumbling" by Kerry Egan. I'd wanted the book for sometime, even before we hiked the Camino Portuguese to Santiago. But, as luck would have it, I didn't get a copy of the book until just last month. In it, Ms. Egan describes how she deals (or rather doesn't) deal with her fathers death, from diabetes and kidney failure. She describes in graphic detail some of the side effects of the dialysis, esp. the bodies inability to handle phosphorus and the granules that form under/on the skin. The skin becomes a method for the body to excrete minerals and other waste since the kidneys aren't working and dialysis can only do so much. It's not pretty.

It leaves me wondering what must V be thinking and fearing. What do all transplant patients feel as they sit and wait, hoping and praying. Hoping someone will step up to the plate and say, test me. Hoping someone will allow Dr's to turn off the machines keeping a loved one alive, even if that "life" itself is no longer there. Hoping someone will allow parts from that loved ones body to be taken and allow another life to go on.

The happy/sad part is that today so many donations aren't made. For one very simple reason, medicine has come so far in recent years, that many accident victims who would have been donors, now simply walk out of the hospital. Wonderful for them, but it adds to the growing list of sick people for whom organs are desperately needed.

So for now, V and I wait. For more tests, for more Dr. appts, for more samples, blood, urine, patience!

Waiting...tick tick tic....

Sort of all done till my meeting with the Nephrologist. Then apparently...later another meeting with the actual surgeon! That won't occur till April 30th. That's when I get to deliver two fresh half gallons of Pee!! Chilled to perfection..and then of course get more blood drawn...wonder if it's going to be 19 vials for each specimen??? That's what they took the last time!! But in all honesty I think those were for some of the original matching stuff and also initial checking of my health. Don't think they'll need that many the next time...doesn't matter! They always remind me that I can quit at any time and they'll cover for me...like that would happen...! I guess it does..but I know I won't, there just doesn't seem to be anyway to not do it. This really is someone else's life, how do I turn away at this point! It would just feel wrong. So now I just try to be patient, and wait...two weeks to go.

Mammo's are fun!

If your into S & M ! But also highly necessary... So today immediately after work, I bolted to the nearest purveyor of Mammography and had my boobies smashed! One more step to my complete physical! I actually remembered the name of one of the surgeons in the transplant team, so they can then forward my results!

Saw V right before I left for the Mammo, and was able to report my happy colonoscopy results!! Which seemed to make her day. It was nice to be able to thank her, because I'd been putting it off for quite some time...like three years! Such an easy exam (your asleep for Gods sake!) and now I have the comfort of knowing that I don't have to do it again until I'm 60!! 7 years from now.

Same thing with the Mammo's...I've been known to skip years! With my family history, I ought not to do that! So now this year I'm smack on time! So there is a real upside to all of this running around and testing! Tomorrow...gotta think about doing my 24 hour urine specimen..Since the previous results were protein contaminated.

Funny thing today, when the nurse/technician asked why I was getting the Mammo..Duh, cause my mother died from breast cancer...I also told her why I needed the results sent elsewhere...and she looked surprised....I'm surprised that more medical people aren't aware of live donor transplants...I'd be really curious to see some stats on medical professional awareness! I'm beginning to suspect that a lot of them really don't know much about it. And that's a lotta lives that could be saved! For want of a little open mindedness and sharing. Not that I want any. ohhh your so brave crap, but step up to the plate people! These are actual LIVES we're talking about. People we know and care about...living and breathing and continuing on because we're willing to push our own "braveness" envelope a little bit. I don't think I'm any braver, tougher or courageous than the next person. It's just that when I ask the question about why would you do this I can only answer, Why Not? For me there is no reason not to...so I do it.

Clean Colon = Clean Bill of Health

Ahh finally finished all the prep work...all the drinking of vile fluids and becoming one with the porcelain throne! Drove my self to the Colonoscopy & Endoscopy Unit. A tad week but clear headed. Found rinsing the mouth with water and the spitting it out kept me from feeling totally dehydrated.

I have to say the people who work there really do go out of their way to make you feel comfortable with what is unquestionably an uncomfortable situation. They really could not have been any sweeter or more efficient. I was only in the waiting room for maybe 5 minutes.

Once in the back I was told to strip and put on one of those fabulous backless gowns. Although, I must say this did have a side tie for some degree of coverage. Grace got me a pair of socks, as I'd wandered in wearing only a t-shirt, jeans and sandals.

A female Dr. with a very heavy Indian accent came and took more vital information...and was very charming a sweet, making sure I was comfy etc etc. They then proceeded to put in an IV site on my hand. I got a bit nervous, after my exciting episode with a CT scan in Philly a week and a half earlier. Nothing untoward happened. In fact they were very good at it!

From here they rolled me into the actual 'scope room and I met my nurse anesthetist aka the woman of my dreams. Basically ... knock me out and you can do any test to me...damn near anything! One white syringe full of Milk of Anesthesia and I was out for at least a half an hour. Best sleep I had all weekend!

Twenty minutes, a glass of grape juice and I'm dressed, walking out the door for Peter to ferry home again!

Sweetest part of the whole deal...having Dr. Taub tell me he won't be seeing me for about 7 years!! :-) Nice guy but nicer interval!

Squeaky Clean!

Today I get to do penance for all the over eating of the winter! I'm prepping for a colonoscopy tomorrow morning. So after stuffing myself with lovely wonderful warm spicy Indian cuisine last night, I get clear liquids all day long!! Good thing I did my weekend bike ride in the hills yesterday! I think it would be a little rougher to do 30 miles on nothing but clears!

Funny thing is a young man I know who lives in Florida is prepping today too! So we'll be sharing the pain! Gary has Crohns (same as my oldest son) so for him this is actually a fairly routine sorta thing. Could probably teach me a thing or two. I did send him a suggestion that some beers might also be considered a clear liquid. Just stay away from the Hefeweissen's!!

During lunch on yesterdays hill ride, I had a fairly long chat with the friend I was riding with about telling and not telling people about this upcoming event. Although I'm "posting" here, I haven't actually told a soul about this blog. So far it's more of an electronic diary. I will probably post it publicly later. For now, I'm laying low.

There are a variety of reasons. One, first and foremost is the privacy of the recipient. It won't take a rocket scientist to figure out who it is and connect us. Second, while I have no questions in my mind about doing this, the negative questions, while well intended, get old. Not that people aren't supportive, but they frequently project their own fears about surgery and all things medical onto me and my situation. I want to be able to support and encourage others, but would never in a million years dream of trying to push or persuade someone to do this. This is something others have said, as though they feel guilty because they're not or can't see themselves doing this. My feeling is it's gotta be from the gut/heart! You the donor just plain want to do it. And if you don't that's really ok too!

One thing to be said for all the testing it's making sure I get all the tires check, rotated, fluids checked etc. I will have one clean bill of health when we are finished!! Gonna have to go now...I hear some green Gatorade calling my name...yum!! Hcccccckkkk (basic hairball sorta noise there!)

Things to be mindful of..

It's been a week since my dramatic swooning in the hospital awaiting my CT scan. Feels much longer.

Had a terrific Easter, although I never got of my chickies in the same place at the same time. But, you learn to be grateful for small things. Patrick & Adrianne came early, straight from church. Peter and Jen came late after work for her and yard work for him. So...over the course of the day, all were accounted for and I'm happy with that.

Now begins the waiting for this, waiting for that. There is a lot that goes into being a donor. Things I wouldn't have thought about, but when explained made absolute sense.

A donor has to be in really good health. Duh. A donor has to be younger than 60 (at least at the U of P) ok, makes sense too. The older we are the slower the recovery, also the more "worn" the parts. Donors are checked for everything you could think of. I'm having to provide results for or have done, Pap test, Mammogram (must be within one year), colonoscopy (Monday!) Glucose testing (fasting, my favorite thing) What they're trying to make absolutely certain of is that in addition to my own ability to handle the surgery, we don't want to pass on any cancer cells. The recipient will be taking anti rejection drugs for the rest of their life. All designed to suppress their body's natural reaction to a foreign substance, my kidney. Now add cancer and you can see where this would leave them. Totally vulnerable.

Then there are the ever popular 24 hour urine specimens! For men...easy peasy! For women..a bit rougher. Usually this gets done twice in the vetting process. I get to do it three times, due to female issues contaminating the first go round w/protein (ie, blood). Not to be to gross, but essentially you have a "hat" as the pros call it, that you place in the toilet and then pour into a half gallon brown plastic jug. Lots of fun! Especially when you have to figure out how to do this in a stall at work. Discreetly. No one at work knows I'm doing this. And then the urine must be kept "fresh". As in refrigerated. Try doing that discreetly at work. I've found using those frozen things for plastic "Ice" things that you put in picnic baskets work pretty well, esp when combined with an insulated tote bag.

Now if this all weren't enough, the samples need to be delivered to the hospital....which is an hour away. Not really a big deal, just hard to do when you work full time. So since I'm lucky enough to have a very good kid, who works 10 minutes from the hospital, I've made arrangements for him to stop by the house on his way back from grad school, pick up my carefully packaged sample, and deliver it on his way to the office the next morning. Think about that...is this a good son or what!

On the upside of it all, I will have as complete and clear a bill of health as any 53 yr old anywhere!

Why

Or as I prefer to think of it, simply, why not.

To actually begin as close to the beginning as possible, I've always been a donor. Of sorts. I've given blood ... sporadically I admit. I've had my license marking me as a possible donor from day one. I've been listed on the bone marrow registry for about 4 years now. So the idea of giving up pieces and parts ain't a new idea to me, or to my family. They know and hopefully remember when the time comes that I'd rather be "useful" than just a pretty body in a box !

So why this extreme and why now? While I've know others who have had kidney problems, V is the first person I've known who was geographically close by. That sort of has the effect of making it more "in your face" if you will. The 2 others I've known were thousands of miles away. So it made any thought of donating very difficult and time consuming to say nothing of expensive because of traveling.

No one asked me if I would. But simply in the conversation, it came out that she'd gone straight to the top of the list for transplant. That tells you how bad her health is now. Usually people can spend a lot of time...gradually getting worse, being watched etc. Not in this case. Her kidneys are simply shutting down, throwing in the towel.

Her illness seems to be inherited so her own kids wouldn't be a good idea. They may be next.

I on the other hand, have no kidney issues, nor any other real health issues. I am of a great age to do this. My kiddies are grown, gone, 2/3rds married! No one "needs" me to mommy them or anything else.

So I simply said to her hubby that I'd be willing to be tested. To say it shocked him is putting it politely. But like I said at the beginning, why not. For myself I can't think of a good enough reason not to do this. Sure it'll hurt. Surgery usually does..but these things pass. Yeah it's a bit of a pain having to go back and forth to the hospital....taking blood (22 vials in one sitting a week ago!) Urine specimens, or as I prefer to think of them, product samples. But really, these are all inconveniences... not real hurdles or difficulties. They pass. But with out a kidney, so too could V. All because I didn't "feel" like being inconvenienced...I think not.

So I guess in a nutshell that's my thought process. It fit's my life "philosophy"...what's the worst that could happen if you do this!! And as long as I'm ok with the answer to that question at that moment...I say Do It!

My favorite books begin in medias res. Smack dab in the middle of the story. So appropriately enough, I begin my tale somewhere in the middle of this journey.

Today was the day I went to the hospital for a CT scan. Specifically of my torso. For the purpose of checking out the lay of the land. Where do my kidneys sit inside me. How are they in comparison to other bodily parts and organs. And via that lovely hot flash of contrast...how well do they appear to work. Which one of them appears best for the plucking. While this is all rather routine for folks at the hospital, some parts of today's journey sure weren't.

I arrived late due to staggering amounts of traffic in Center City, on what should have been a fairly light travel day. After all a good number of business give off on Good Friday. So I thought getting there would be a piece of cake. I figured and hour plus to get to the U of P Hospital would be plenty. Wrong. Sitting in the Vine St. express way, watching the gas gauge go lower and lower and starting to sweat with anxiety, I actually called my youngest and had him check on line to see if there was any news of an accident...nada! I finally did a grand tour-de-tour thru down town and arrived at the hospital only about 15 to 20 minutes late.

Fortunately U of P is a big place and builds in a fair bit of play to their schedules. They also have the most fabulous valet parking system. So all I have to do each time is find my way there, and hand over my keys. Sweet system!

I bolted across the street via one of the terrific overhead walkways, and into the Perlman Building , down the escalator and into Radiology. The receptionist gives you one of those discs that restaurants use to let you know your table is ready. Hmmmm. Table for one...interesting!

They seem to streamline my waits (guess they like me!) and I'm in the changing/waiting room after only one page in my 900 page book. Yes, I am that prepared. I find myself sitting, elegantly clad in large blue, grey and maroon hospital gowns together with two other women. They get the ever popular milkshakes of indeterminate flavor that everyone just loves to chug before getting a look see at their innards. Me...I get nothing.

In fact at this point I haven't had anything 'cept a cuppa coffee early in the morning. It's now approaching 1:15! No water...no food...zip. Actually those chalky cups of goodness are actually starting to look really good! Now that is desperation.

Moments later a cute young man calls my name and the fun begins. I need to have an IV site put in for the contrast that will be coming later. Now mind you I've already had lots, and lots and lots of blood drawn as well as other stuff done to me. But today my bod decides it wants more contrast of a different kind. As we're chatting about blood, blood transfusions, blood stains not showing on these gorgeous gowns...stuff I really do find fascinating...I felt light..fuzzy. I know this feeling well, unfortunately, very very well. I don't play this game lightly and promptly look at him..and say "I need to lay down. NOW." Apparently the bit of blood that got spilled (but didn't stain my gown!) was the last straw to my usual low pressure, after a morning of dehydration.

According to sources I went down three times! I dunno I wasn't really there...but apparently they still use the same nasty formula for those ammonia thingys! Eww! But I did get my stretcher and nice warm blankies! After about 45 minutes of embarrassment and a bag of saline and a little begging on my part...I finally get my CT scan! I mean do they really want me having to go thru this again...???? Why not just do it and get it over with. Apparently they agreed!

So now I await the return of the prodigal surgeon, who had a family emergency.

Ok, I guess the why needs to be answered. I am a living donor for a kidney transplant. Or as I told them today...I'll do anything to lose a pound or so of weight. Anything!