Ain’t Love a Kick in the Head?

November 23, 2009 at 9:56 pm | In CKD, Daddy-O, Family Ties, Kidney Disease, The Crap that Men Do | 2 Comments
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We cleared the final pre-transplant hurdle today.  During the Summer, Alex had a Thallium Isotope test to check out his heart and it came back with an indication that there was some damage.  The test “revealed” that part of his heart was not receiving oxygen.  This could have been a major setback.  However, the Doctors felt that the test was “inaccurate” due to a number of things:

a) They had to use Thallium instead of Molybdenum (thank you AECL!)
b) he had just come out of ICU
c) his body was going a little nutso trying to heal itself

His Cardiologist also said that if the test had been correct and that his heart was as damaged as it “appeared” to be, he would have had to have been treated for it already or would have been dead.  So, we had a strong indication that the test was incorrect.

He was sent to St. Mike’s today to undergo a Cardio Chemical Stress Test.  Basically this means that they fill him full of drugs to make his heart think he’s running on a treadmill when he’s really not.  They said there might be some complications.  Here’s how his day went:

  • We got there at 1:00.
  • His test was booked for 2:00.
  • They took him in close to 2:30.
  • Around 3:30 the Doctor came to tell me they couldn’t get the IV in.  (Lately Alex has had problems with his veins, the needles tend to go right through instead of into.  They are very fragile.  Four different Doctors jabbed him trying to find a vein.  They had to page the Phlebotomist and ten seconds after she appeared, she had the IV hooked up.)
  • They finally pumped him full of drugs, the first to get his heart rate up and the second to get it “excited”.
  • His blood pressure shot up to 240/170.  Normal is 120/80. 
  • He got a splitting headache, which he equated to the pain I had when I had the “stroke” (Eclampsia) after Lexy was born and the blood vessels in my brain ruptured.  If that’s the case, I’m so sorry honey that must really hurt.
  • He said as soon as the drugs went into his body and he could feel the rapid beat of his heart, it felt like someone was banging a drum with a sledgehammer inside his head to the same rhythm as his heart.
  • It took him twice as long as normal to recover from this test.
  • We finally left after 5:00 (this was only supposed to take an hour, it took four).  Thank goodness I had my iPod with me (I watched “Coraline“, played countless games of Gin and Euchre while listening to a lot of music!).
  • I thought he was going to pass out on the train platform.  At one point, his eyes rolled upward and his eyelids closed, he was pale, in excruciating pain and just wanted to be in bed.  I so wish he didn’t have to go through this.

The good news is that the Cardiologist said that he is going to recommend that they proceed with the Transplant.  They just want to get his blood pressure stable first, as it’s still high but normal for him (150/90 range constantly).  The test today was our last hurdle.  His Dad has been cleared as a donor.  Alex is being cleared as we speak.

Maybe Christmas is really coming.

I have been reading a blog that I found when trying to find some more information on Kidney Transplants.  It is called My New (Transplanted) Kidney.  It is written by a man named Allan who lives in British Columbia.  He found out he had Polycystic Kidney Disease and was about a year away from Dialysis.  His Brother-in-law donated his kidney in a kidney swap and this in turn gave Allan a new kidney this past July.  It’s a pretty scary (as in learning the real truth) blog site, but it has been an eye opener.  The thing I really like about it is that he holds nothing (and I really do mean nothing) back.  He writes what is “numbers” are at each blood test.  He showed a picture of his incision site.  It is really informative and helpful.  It helps to see what we will and could be facing.  Thanks Al for your blog, please keep it up if you are able.  I wish you the best in your recovery.

Kudos to Al’s Brother-in-Law for his altruistic, selfless act.

Kudos to Alex’s Dad for the same reason.

Kudos to everyone who has (or will) donated an organ.  Organ donations save lives.  Please support the green ribbon campaign.  Please sign your donor card.

Crazy Week

November 3, 2009 at 12:06 pm | In All Things Doodle, CKD, Caityisms, Daddy-O, Family Ties, Kidney Disease, Miscellaneous Crap, Sisters | Leave a Comment
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We’re off to the hospital in a few minutes.  Alex is having his PD Catheter removed because the silly thing never worked and it got infected.  They want him healed before he has the transplant.

Tomorrow I’m taking the kids to the Doctor’s office to get their H1N1 shots.  My doctor is holding a ‘clinic’ for his patients only on Wednesday (for high risk) and Saturday for the rest of us.  I’ll go on Saturday.  I’ll likely have to bring the kids too because Alex has Dialysis on Saturdays and Lord knows how long we’ll be at the office.

My Sitter’s daughter is really sick, fever, sore neck – don’t think it’s H1N1 but I’m kind of worried about her being there with the wee ones running around … She even has one of the babies sleeping in the sick girl’s room … eek.

Other than that it’s been three days I think since I’ve last visited Facebook.  Apparently that’s the right amount of time to get over an addiction.  I no longer think about having to check it all the time.  Finally some peace.

Caity’s sleeping in her big girl bed now, has been for the past two nights.  On Sunday night, we couldn’t wipe the smile off her face, she was so proud and happy to be in the bed.  It was very cute, seeing her all snuggled, clutching her blankets to her face, smiling.  She looked so little in the single bed, like a little baby in a crib.  My baby’s growing up – she’ll be three in February.  Eeek!

Lexy has decided that since Caity has a new bed, she wants one too.  She tried to tell me that she’s nearly outgrown her current single bed (not likely).  She said “look Mommy, my feet almost touch the bottom” … yeah almost touch the bottom in another two feet … nice try kid.  You’re keeping that bed for a bit.  At least until we get enough money to buy you a proper bedroom set.

Enough is Enough

October 31, 2009 at 11:53 am | In CKD, Family Ties, Kidney Disease | 4 Comments
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***UPDATE***

Before reading my rant below, it should be said that this isn’t directed at the circle of friends infamously known as “da boys”.  It’s targetted at a different group of people I know and everything I’ve heard from people all around me.  As I’ve said to a few people already, maybe I’ve finally lost my mind.  I apologize to that circle of friends for the misunderstanding, your friendship and opinions are valued and I hope I haven’t hurt anyone because of it.

——————

I’ve deactivated my Facebook account. I don’t understand why people feel the need to post the fact that they’re in the bathroom having their daily constitutional via Facebook Mobile.  I’m getting so sick and tired of that silly site and everyone’s soapbox.  The only thing worse than Facebook is Twitter and all those Twitheads who care about this crap.  Really, who cares about what super expensive and ugly shoes Kim Kardashian “tweeted” about buying five seconds ago?  I’m more concerned about being able to pay the bills and keeping a roof over my kids’ head when my husband will be off work for three months, post surgery.  What really annoys me the most is all the alarmists out there who have heard the latest scare about H1N1 and continue to listen to, and spread the propoganda.  The reliable sources (i.e., mainstream media) have said there’s no truth to the neurological problems created by the H1N1 vaccine, yet even my MIL has been harping about it, frightened that she will be “the one” that it happens to.  Give me the proverbial break, you’re not that lucky. Play the lottery if you believe in odds like that.  Read this:  http://www.healthzone.ca/health/newsfeatures/swineflu/article/718829–vaccine-phobia-runs-deep.  Yes, it’s not the New England Journal of Medicine, but mainstream nonetheless.

The only reason to not get the shot is if you have an allergy to eggs or metal.  Zip.  That’s it.

You have a greater risk of dying in an airplane crash than from receiving the H1N1 Flu shot, yet people still fly … funny isn’t it?

And thank you to all of you assholes who refuse to get the shot because of some propoganda you read in the Enquirer for putting the rest of us who haven’t received it yet at risk.  Just because a story is in print, doesn’t make it the truth.  Elvis does NOT live in your neighbour’s refrigerator!

I’m so fucking sick of all the drama.

There are enough real problems in the world that we have to deal with that we don’t need this bullshit on top of it.

I’m sick of “if you get the shot you’ll die/become paralysed/have your head fall off (insert flavour of the day here)”.

I’m sick of “if you get the shot, you’ll harm your kids”.

I’m sick of “if you don’t get the shot, you’ll harm your kids”.

I may not be university educated but I certainly don’t need a lecture on how to live properly from those who are or who think they are.

Can’t wait to hear the outcome of this one…

The Flu and You

October 28, 2009 at 1:46 pm | In CKD, Kidney Disease | 2 Comments
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I received this email in my inbox this morning.  Last year when a co-worker’s infant son passed away, I made a donation in his name to the Sunnybrook Foundation and I guess I’m still on their mailing list.  I’m kind of glad I am.   Printed in its entirety, as I received it:

“Dear Sunnybrook supporter,

The shear volume of, and sometimes conflicting, information about H1N1 that you’re receiving through the media may be leaving you a bit confused about what to do next.  We can help you.

Dr. Mary Vearncombe, the medical director of Infection Prevention and Control at Sunnybrook, has some straightforward and simple advice for you. She gave a public presentation on the subject last week at Sunnybrook. If you missed it, or if you’d like to see it again, we have posted it online so you can view it in the comfort of your home or office.

Topics covered include:

  • What is a pandemic and why is it causing so much stress?
  • What are the symptoms of H1N1?
  • Who is most likely to get sick?
  • When is it time to call a doctor?
  • Who should get a vaccination, and when?
  • How you can protect yourself and your loved ones?
  • Behind the scenes planning at Sunnybrook

 The video presentation can be viewed here.  Just click on the title “H1N1 and You.”  You can use the controls to watch the presentation at your own pace.

 For Sunnybrook breaking news on H1N1, visit our website.

 Please note that Dr. Vearncombe’s presentation was made possible thanks to Roche Pharmaceuticals, whom Sunnybrook thanks for its support.

 Sincerely,

 Kevin Goldthorp

CEO

Sunnybrook Foundation”

I’ve heard arguments from both sides of the fence.  My daycare lady was waffling because she said the last time she got a flu shot, she got really sick with the flu.  I reminded her that she works with little kids.  She did some research and decided to get the shot.  We’re getting the H1N1 shot and the Seasonal Flu shot too.

I hope the link to the presentation above will help you come to an informed opinion.  The only thing scarier, in my mind than getting the H1N1 shot, is not getting it.

I’m interested in hearing your opinion on why you would or would not get the shot.  We’re still waiting to hear if Alex should get it.  “They” recommend overall that people with renal issues should get the vaccination, but the clinic where he has his dialysis done are waffling. 

Alex’s PD Catheter has become infected at the exit site so they moved his surgery to remove it up to next Tuesday (from mid-November).  It will be so much better for him without that thing there.  It hasn’t worked since they put it in for whatever reason.  It’s too bad he had to go through that in the first place, all the pain and suffering.  It held such promise though, the promise of an easier lifestyle. 

Now we’re waiting for the transplant, which if all goes well with the final tests the surgery could take place in the early new year … keep your fingers crossed and your good wishes coming – they seem to have helped :-)

It’s Been a While…

October 21, 2009 at 8:16 pm | In CKD, Daddy-O, Family Ties, Kidney Disease, Miscellaneous Crap, The Crap that Men Do, Toeses and Noses | 2 Comments
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Sorry I haven’t written in a bit, been a lot going on lately.  Last Thursday was my husband’s 30th birthday.  I don’t think he was particularly looking forward to the great event.  I tried to surprise him by taking him to Dave and Busters with our friends Candace, Greg and Sib, but he claims he “knew”.  I think he knew something was up, I mean how could I forget his big birthday?  Why on earth would I want to go to the Bass Pro Shop (that’s the line of bull I fed him)?  I can’t imagine this is what he thought it was though.  Our other friends (Scott & Jessi, Brian & Sophie and Paul & Kelly) were waiting for us when we got there and it was so nice to see everyone.  Some of our group couldn’t be there because they were working, but they were thought of nonetheless.  We hadn’t been together in a long time, too long I think.  It was a wonderful night, good conversation, lots of games and too much to eat and drink!  By the way Paul, where is my Stella glass?? ;-)

On Saturday, Alex and I will have been together for ten years.  A huge milestone, especially when you consider that the longest relationship I had prior to meeting Alex lasted a total of 8 months …

In those ten years:

  • We’ve had two beautiful babies.
  • We’ve bought a house together.
  • We got married.
  • We’ve loved.
  • We’ve cried.
  • We’ve laughed.
  • Most of our friends have careers.
  • Most of our friends had either gotten married or engaged.
  • Most of our friends now have children.
  • Most of our friends have homes of their own.
  • Most of our friends have just turned/will soon turn 30.  1979 was a popular year!

In other words, we’ve grown up.

In those ten years, I finally learned what our friends’ real names were (having being introduced and only ever referred to by a nickname:  Bear, Sib, Shrigs, Suddes, Whopper, Fox).

The best part of the last ten years is that no matter what happens, no matter how long it’s been since we’ve seen each other last – if you really need them, they will be there for you.  They truly are friends and they’ve never shown it more than over these past few months that we’ve been dealing with Alex’s illness.  Thanks again everyone!

I have a good husband.  He is an amazing father.  Our children adore him, as do I – even when he’s bad ;-)

*I let Alex read this post and his only comment:  “I’m never bad” … my reaction:  pfffttt!*

A Modern Day Hero

September 24, 2009 at 6:26 pm | In Daddy-O, Family Ties, Kidney Disease | 1 Comment
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There’s an article in today’s Globe and Mail that’s very near and dear to my heart.  It’s a story about Lisa Sayer who decided after reading an article on Organ Donation, to donate her own kidney – to a perfect stranger.  This precious gift had a domino effect and four people received new kidneys as a result of Lisa’s generosity. Incredible.

You can email questions to Lisa, via the Globe and Mail and she will try to answer them.  They will be published next Tuesday.  If you want to ask Lisa about her amazing journey, write to her at this address:  lifediscussions@globeandmail.com before 2 p.m. (EST) on Friday September 25, 2009.

I simply sent her a comment.  I said “Thank you”.

As an update on our end, it’s been pretty trying.  A real roller coaster.  Alex’s PD catheter does not work. at. all.  It was a waste of a procedure, an unnecessary procedure that caused him so much pain but gave him some hope that he would be free from Hemodialysis.  His Dad’s last blood test, for tissue matching, came out positive!  He only has one more thing to do, a stress test, and then the two of them could be on the operating table by Christmas!

It’s not all good news though.  One of Alex’s tests came back and there’s some concern now with his heart.  It appears as though some part of it is not receiving enough oxygen.  You know that saying “when one door closes, another one opens?”  Here it feels more like “when one door closes, another door closes”.  He had a test earlier this summer whereby they injected him with the Radioactive Isotope Thallium.  Because of the current Chalk River Isotope crisis (stoopid short sighted arrogant AECL), they didn’t have any of the normal short half-life Isotopes available that they normally use, so they had to use Thallium which has a half life of 12 days.  I don’t know if the test results are the same with both but we’re hoping that there was some sort of explanation that is easier to bear than heart failure.  We’re not sure what caused the damage to his heart, it could have been the drugs he’s taking as a result of his disease, the disease itself (although it’s rare that IgA attacks anything other than kidneys), or the drugs he was taking to control his blood pressure before he was diagnosed, or simply damage done from the undiagnosed high blood pressure in his early 20’s.

I hope they won’t stop the transplant.  I hope it’s minor.  I’m so stressed right now I can’t sleep.

He has another test coming up where, get this, the MANDATORY prep is:  eating a bowl of Jello.  Yes, seriously.

I wonder what test you have to take that requires you to each chocolate.  You can sign me up for that one please.

Arrrgggh

September 3, 2009 at 9:51 am | In All Things Doodle, Caityisms, Daddy-O, Family Ties, Kidney Disease, Miscellaneous Crap, Toeses and Noses | Leave a Comment
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Why is it every. single. time. I take vacation days, someone ends up sick?  I’m so frigging frustrated that I can’t get any time off to myself I think I’ll scream. 

Last holiday weekend I took two days off and Alex ended up back in Emerg.

This holiday weekend Caity’s sick.  She’s got a really bad cough that kept her awake most of the night.  I know what you’re thinking, but I can’t blame this one on Grandma.  Caity’s all stuffed up too and really whiny – a winning combination!  She moaned and groaned her way through her sleep last night.  I put the vapouriser on but it didn’t do much except make her sweat.  Her room was quite sauna-like from the vapours.  She woke up at one point and pointed to her chest, she then said her tummy hurt.

On the ride to the sitters, she said “I tider Mommy”, a.k.a. tired.  Poor kid.  Hopefully Lexy won’t get it before she goes to school on Tuesday.

I went and found her class and teacher yesterday.  I found out what we’re supposed to do with the kids the first day.  I can’t believe she’ll be a “Grade One-er” this year.  I’m going to be a wreck on Tuesday, I know it.  Lexy told me she wants the same thing she had last year for lunch.  All she would eat was those crackers and cheese from Schneider’s.  I told her that she was going to school every day now so I suggested a sandwich one day, crackers and cheese the next, then a sandwich, crackers and finally a sandwich. 

“Oh Mommy, a pattern!”.  She loves patterns.  She thought this lunch pattern was a great idea.  We’ll see how successful we are.

I’m getting an oil change and then an emissions test on my car today.  I’ll have to get a vehicle sticker tomorrow as it expires on Tuesday, my birthday.  Another year older, not necessarily wiser.  I’ll admit I know more now than I did ten years ago, but I wish I had those ten years back – age wise that is.

My husband and I are finally going out on Saturday.  We’re using that gift certificate that Colin gave us about two months ago.  Thank you again Colin, it was such a sweet thing to do.  We haven’t been able to use it before now because Alex hasn’t been well enough to go out to eat.  Everything was making him sick – I guess his levels were off and he needed to get that under control.  He’s feeling a bit better now and we have a babysitter booked so ‘hallelujah’ we’re going out!  I haven’t been out on a date with my husband in months.  I think we both deserve it.

Next month is a big month for us.  October 9th is my parents’ 50th Wedding Anniversary.  Holy crap! 50 years!  I’d like to take them out to dinner, us three kids as this is a helluva milestone.  I’ll need a sitter for this though so I’m not optimistic.

October 15th is Alex’s 30th birthday.  Honey, I hope your 3oth is better than your 29th was.  I’m planning an outing on the 17th with his friends (if they ever get back to me that is).   We need a sitter for this one too.  I might be able to get one.

October 24th is Alex and mine 10 year anniversary of the day we met.  This is the day we used to celebrate before we got married.  He told me that once we were married, I wasn’t allowed to have two anniversaries.  I don’t see the logic in that … it means more presents!  I’d like to get out for dinner with him then but again, the sitter thing is a problem.   I can’t believe we’ve been together that long.  In that time we’ve had two beautiful children, bought a house and got married.  It’s been a fun ride (except this past year)… can’t wait for the next  ten. :-)

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