Monday, January 27, 2014

Watch out for those speedbumps!

I got an email from my coordinator today; the results from my hypercoagulopathy study redraw came back.  One of the numbers is still pretty high.  I'm not 100% sure what that means from a donation standpoint.  There are a few things that cause it and there are a few things that it can cause.  The results are going to be sent back to nephrology and rheumatology, and we will go from there.  I am anticipating having to have more tests run, and I don't mind at all.  I knew that there was a small chance that something like this could happen; they are analyzing every single system in my body, and with the amount of blood they have taken from me, I'm surprised that the results didn't just pop up from one of the tubes.  So basically, I have defective blood.  Based on the rest of the lab results, it has no effect on my kidney function, which in turn will not affect function once said kidney (from what I have been told, the left one is being transplanted.  Let's call it Lefty from now on, shall we?) is transplanted.  Lefty and her counterpart Steve are functioning exceptionally well, so my defective blood is solely a "me" issue.  Also, there are unconfirmed rumors floating around that we may be doing this transplant in 5-ish weeks.  I've not heard that officially, but I'm planning as though this may happen in 5-ish weeks.  I am looking up freezer and crock-pot meals, amassing reading material and quiet projects like crocheting and knitting (or some semblance of said activity that will likely look like I took the yarn and knotted it into a "scarf"), and ways to entertain a toddler when he begs to sit on my lap in the first few days.  I have also considered making "cough pillows" for myself and J.  I'm thinking of a Doctor Who theme, and a small patch on his that says "I have new kidneys!  I don't like the colour. ~12"  I think it's quite appropriate, don't you?

We (J and I) have had a couple conversations about whether or not he will "inherit" some of my quirky traits after transplant.  Apparently this is a thing; recipients sometimes start exhibiting similar behaviors to their donors.  We were also just joking about our in-hospital accomodations.  As it was described to me, I will be staying in a private Donor Suite, the Hospital Hilton if you will.  I am not sure what kind of room J will be in, but I can only assume it will not be a stretcher in the hallway.  We also have a friendly wager going on who visits whom first.  The stakes: french fries from McD's.  We are simple creatures.  

All righty friends, it is late and I must shop for a new couch.  And do the dishes.  And switch over the laundry.  See, I'm really just an ordinary girl!

Peace out!

Monday, January 20, 2014

Well that was a fun week...

No, I did not fall off the face of the planet.  A mere two days after the fun of Donor Day, I was hit squarely in the face by the evil Flu.  Had the tiniest of tickles in my throat after work on Saturday, then woke up Sunday feeling like a fleet of Mac trucks had driven over me, stopped on top of me, and decided to idle for a week.  Oh, and I also infected my son.  So there was me, sick as all get out, dealing with a really sick 19 month old.  It was the best week ever!

Anyway, all my lab and imaging results came back great except two.  My hypercoagulopathy studies came back abnormally high, which is not awesome news because it can be an indicator of clotting issues.  I will have to have them drawn again.  After the results come in, we can schedule surgery.  We're coming down to it folks.  I am in a place where the anxiety feels overwhelming sometimes, but I just keep telling myself that it is all for a very good reason.  I remember that as intimidating as this process can be at times, the end result is that a friend will be healthy!  I'm just glad that I have the support that I do.

Having said that, let me be very frank; there are people in my life that flat-out refuse to even discuss this process.  Let me be very clear: this has not deterred me from the end goal!  The decision to donate is a very personal one.  It is my decision and mine alone.  No one can make it for me, nor can anyone make the decision for me not to.  I have been deemed an excellent candidate for donation by a very competent team of surgeons, nurses, social workers, psychologists, radiologists, nephrologists, and a bunch of other -ologists.  My intended recipitent is also very much on board, because he has just as much say in whether or not he takes my kidney as I do in whether I give it to him.  In truth, I made the choice to be an organ donor nearly 20 years ago when I signed a little piece of paper at the DMV.  The only difference here is that I am still alive when I donate.  My detractors have not really expressed their feelings about this donation to me, nor do I expect it.  I've gotten a few "what-if" questions, but that's about it.  I respect them for those opinions, but aside from my medical team and myself, the only other opinion that matters is this process is that of my husband.  He's cool with this.  I have spared him no detail that has been shared with me along this journey; what I know he knows, right down to how many vials of blood they take when I go to the lab.  I have been completely transparent.  I have created the opportunity for dialogue with everyone I know.  There are some that have embraced that opportunity, others that feign interest for a short time and then let it go to the wayside, and as I stated above, those that don't want to discuss it at all.  That's fine with me.  Not every wants to know or cares to know.  

So friends, I'm going to have those two labs drawn tomorrow or Wednesday if the weather is too bad tomorrow.  Hopefully we will be scheduling surgery by next week.  I know I'm not the only one who's ready to get it done!  =)

Til next time!

 

Thursday, January 9, 2014

I'm Not Glowing!

*WARNING: TODAY'S POST IS LONG!*

All in all, Donor Day was a rousing success.  Nevermind that I was deliriously tired, having worked last night and having gotten up at 6 this morning, and let's forget the fact that a good part of my day was spent going between two different buildings for the various appointments I had to keep.  Let's go ahead and visit this lengthy process for a bit:

7:45 am: Check in with the Transplant clinic, meet with the Donor Coordinator's Assistant and review the upcoming appointments for the day.

8:00 am:  Meet with the Donor Coordinator and have a "presentation" about the donation process.  This included a Power Point presentation (we went through the printout, as I was the only donor there today.).  We discussed what the surgical procedure was like, what to expect from my hospital stay, what my restrictions would be post-operatively (no lifting anything over 10 pounds for two weeks, which is easier said than done with a 19 month old, pain management, etc.), how often I would have to follow up with the team after donation (I will be followed by the transplant team for 2 years, this is standard protocol for the hospital I am donating at), and the various risks of donation.  As a whole, the risks are fairly standard as surgeries go; blood clots, pneumonia, wound infection, hospital-acquired infection, and that ever-present risk- death.  Those are all pretty minimal, but they have to be discussed with the team.  There is also a risk for depression and/or anxiety.  This mainly ties into the fact that they will be removing an organ and that there will always be an uncertain possibility of rejection.  These risks are discussed almost to the point of beating a dead horse; it is important to always keep these risks in the back of your mind though; being caught unaware would be undesirable.  We also discussed the long-term implications of having only one kidney.  My remaining kidney will grow a bit to make up for the fact that it has to take up the slack for its counterpart being taken away.  I'm sure that if organs had thoughts, up until this point, my pee makers were pretty oblivious to what was going on.  Then they got flooded with radioactive contrast, at which point they were probably screaming "What the bloody hell is going on out there?!?!"  More on that in a minute.  With only one kidney, I will not be able to take Ibuprofen or other medications that are broken down by the kidneys.  My kidney will have a slightly tougher time handling their job on a day-to-day basis; throwing anything extra its way would not be very nice.  We also discussed that while this is a necessary surgery for the recipient, this is 100% elective for the donor, and that I should in no way feel obligated or pressured to do this (I know this, I don't feel obligated.  The choice to donate is deeply personal and while the team would help me should I change my mind, I don't think this will be an issue)  This wraps up the Donor Presentation, so then we move on to Radiology.

9:10 am:  I am waiting in Radiology to have a chest x-ray and CT Angiogram done.  The angiogram is to check the structure of the kidneys, adrenal glands, and surrounding blood vessels.  This is important, because this test will show the surgeon what he can expect before surgery from an anatomy standpoint.  It will also alert the surgeon if there are any stones, cysts, or abnormalities that are otherwise undiagnosed.  The chest x-ray is fairly standard.  It will show any abnormalities in your lungs and ribs, make sure you have no fluid in your lungs (pneumonia), masses, or other abnormalities.  Go in, hug the metal plate, inhale, hold and wait, exhale.  Turn to the left, raise my arms above my head and inhale, hold and wait, exhale, done.  The angiogram was a little more intense.  If you've never had a CT scan with the contrast, hold on to your undies, you're in for a ride (literally)!  I went in to the freezing cold CT room (wearing 2 hospital gowns, my socks, and sneakers.  I was one sexy woman!) and was warmly greeted by the technologist.  She explained the procedure and then we started.  She placed an IV into my arm, tested it with some saline, and hooked me up to the pump that administers the contrast.  We did 3 scans: a "scouting" scan, where they just quickly scan to get a sense of my anatomy, the second scan during which they fill the blood vessels with a little saline and contrast, and the third during which they pump the rest of the contrast as the scan is happening.  The last is to see how the kidneys filter the contrast out and into the bladder.  Now, one important thing to note is that the contrast had a weird side effect: it gave me a brief metallic taste in the back of my throat, which was quickly replaced by an intense feeling of heat from the back of my throat to my nether regions, almost like I had peed my pants.  Not at all pleasant.  After the scan, the IV was removed and I was on my way!

12:15-12:50 pm:  Lunch.  Panera Bread, nothing too exciting.  Lots of water to rid myself of the taste from the IV.

12:50 pm:  Meeting with the donor nephrologist.  I had to pee in a cup again (I probably could have filled that damn bucket!) and had an EKG.  My ticker is fine. Kind of a bland guy, went over my medical history for the billionth time.  Reviewed my lab work for the millionth time.  Had my second physical exam of the week.  Discussed the risks of the surgery again, discussed again that the team would help me should I change my mind about donating, and he wished me well.

1:20 pm:  I had to meet with the Social Worker.  We discussed the whole process again, but in more detail.  We talked about my support system (I am fortunate enough to have tons of amazing family and friends who will help me through this process), who will be home with me after the surgery, trying to uncover any underlying risk factors that could potentially halt the process (mental health issues or prior drug abuse are two of those things), making sure my mental faculties are intact, making sure that finances weren't going to be an issue (I am not paying for any of the testing, surgery, hospital stay, or after care.  The finances in question are any lost wages while I'm out.  There are grants available to help with basic bills.  All I have to do is call.  We also discussed whether or not my job is supportive of my being out; they are super supportive!  We finished up with a "See You Soon" and I was on my way.

2:15 pm:  The final meeting of the day, and it's with the surgeon and Donor Coordinator.  Of course, me being me, the first question I ask is what happens to the adrenal gland.  He kind of chuckled and pulled up my CT scan from this morning.  He showed me that because the way my anatomy is, the adrenal gland will likely be unaffected.  He also said that my kidneys are in great shape, the blood vessels look awesome, and he sees no real problems with proceeding with surgery.  He also did a quick physical exam (again).  The surgeon and Donor Coordinator let me know that they will review my results this coming Monday and assured me that I should hear back from them by Wednesday next week as to an approximate timeline for surgery. From there, we schedule surgery, do our pre-operative testing, and do this thing!

So, the moral of today's post:  I have had more physical testing and labwork in the last month than most people have in 3 years, I should get paid for my urine and blood, and I got no super powers from a radioactive injection.  Good Night!

Saturday, January 4, 2014

Happy New Year!!!

Now that the hustle and bustle of the holidays are behind us, and I have a few minutes to post, let me begin by saying that I hope everyone enjoyed their holidays.  There are really no new updates on the transplant process itself.  We are still in a holding pattern pending my Donor Day visit to the hospital and possibly a few more tests for J (not really sure, we've both been crazy busy!).  This is more of a "how am I feeling about this process" post.  

I have to be honest: the closer we get to the actual transplant, the more nervous I become.  I realize that this is a totally normal reaction to having surgery.  I've had a grand total of 2 surgeries in my life; one when I was 15 to have my tonsils removed, and one when I was 27 for abdominal surgery.  The tonsil surgery was a little less nerve-wracking because I got to look forward to being able to swallow normally, and I was too young and naive to know how it would affect me, physically.  When I woke up, I heard the heart monitor beeping and thought I was dying.  The second one was a bit more anxiety-inducing because I knew that I didn't do well with waking up from anesthesia (I wake up thinking that I'm dying, remember?).  This time, I have that knowledge coupled with the fact that laparoscopic surgery makes you feel (and look ) like an over-inflated balloon because of the gas that the use to inflate your abdominal cavity so they can better navigate around your internal organs.  Sounds like a blast, right?  Not really!  When I woke up from the second surgery, I swore an elephant was sitting on my chest and that the surgeon had tried to use me as a party decoration.  The nurse did her best to reassure me that this was most certainly not the case; I was too heavy to float above the table, and the elephant was too large to get into the room.  I'm fairly confident that there will be no large pachyderm sitting atop my body as I wake from this surgery, so there is one less worry.

No, my worries are much more sane this time.  I'm worried about being away from my husband and son while in the hospital.  I've never spent a night away from my son.  I'm worried about the logistics of surgery day: who will stay with the kiddo when I go in for surgery?  Should I have Husband stay home with him that morning and have someone drive me in?  I've briefly discussed this with my best friend (Son's Godmother) and she is okay with doing this.  Husband is a little bit on the fence; while he wants to be there when I go in, I want to keep the disruption to Son's schedule as minimal as possible.  I'm worried about how I'm going to keep from going crazy while in the hospital.  I'm I do plan on bringing a couple of books with me, maybe a crossword book or something, but I don't plan on bringing any electronic devices other than my phone because I don't want to chance having them go missing if I have to leave my room for something.  All these weird, random questions keep running through my mind about how I'm going to deal with this process.  That's another reason why I started this blog.  I feel a sense of calm being able to put these nagging questions down on "paper" without having to talk my friends and family to death; I sometimes feel like they are sick of hearing about it.  

And speaking of stuff to worry about, I really need to remember to ask the surgeon about which kidney they usually remove for donation and what happens to the adrenal gland that sits atop that kidney.  For those that aren't versed in human anatomy, the adrenal glands are paired glands.  One adrenal gland sits atop each kidney.  Both glands have several arteries bringing blood to it, but only one vein taking blood away.  That's where the similarities end.  The right adrenal gland empties directly into the Inferior Vena Cava, a large vessel that carries blood from the lower body back to the heart.  If this kidney is removed, there is no interruption to the arterial or venous supply of the gland.  The left adrenal gland does not; it empties into the renal vein, which in turn empties into the Inferior Vena Cava.  If the left kidney is removed, the venous access to the adrenal gland is removed, and the gland has no way to rid itself of blood.  This can lead to some bad things happening, like blood clots forming in the gland causing the gladular tissue to die or become infected.  I'm pretty sure those are worst case scenarios; I'm still doing research on the subject, and I will be discussing this in-depth with my surgeon on Thursday.  Other than the adrenal gland issue, I really don't care which kidney they take, I'll miss either one just as much as the other.  They have both played an integral part in eliminating waste from my body.  I'm quite fond of them, and proud that one of them will go on to help someone else pee.  GO KIDNEYS!!!

Good night friends!