Tissue Typing & Crossmatching

Today we went downtownt to Transplant Hospital.  We took our daughter with us as well to heck out the hospital where it will all happen.  We wanted to include her in certain things that aren't to deep just yet, introduce her a little at a time.  Tissue typing and cross matching consisted of each of us having blood taken.  The Receipient had 5 viles taken and an ECG and the donor had 9 viles taken.  That's all there was to this process, it's now the 3 weeks of waiting until we find out if we match one another! 

John 13:35   
By this all people will know that you are my disciples, if you have love for one another.”

Sicknesses with Kidney Disease

Finding it difficult with my husband being sick with a cold while having kidney disease.  When he gets a cold, he gets it triple times worse then the normal person, why his immune system is low.  We need to keep him clear of infections, he needs to be strong on a consistant basis in hopes a transplant happens, so it can happen.  He started a course of antibiotics tonight so that should assist his healing.

Psalm 41:3The LORD sustains them on their sickbed and restores them from their bed of illness.

Organ donation: What you need to know - Canadian Living

Organ donation: What you need to know - Canadian Living

Full Speed Ahead

Got the call, all First Phase Tests are good!  This means 2 things!  I'm overall healthy and we move on to the next step in the kidney donation process!  On my Phase papers it didn't have an insert for Tissue Typing and Crossmatching but that is what they tell me is next.  It makes sense to do this at this stage since they need to ensure my husband will accept my kidney.  They have scheduled it for December 3.  If they results come back negative then we can still proceed, but it will be with the paired exchange program which I will update more once we know our results.  Once testing is done it takes 3 weeks to come back.  It seems like a lifetime away just to get the testing done, and eve further for the results.  However the saying goes,

Lamentations 3:25

The LORD is good unto them that wait for him, to the soul that seeketh him.

Another Kidney Check Up

Another Kidney check up was today.  The Dr's and Nurses are amaxed at how we are keeping the nutrition level under control for the kidney's, this is a definte reflect on prolonging the need for kidney dialysis.  The creatnine level is at 734, up from last time.  Every time we make a visit to the Kidney Care Clinic, we wonder will this be the day we are told dialysis needs to start.  Today the Dr did not suggest dialysis yet, again mainly because there is a kidney donor being worked up, however he does hope it happens sooner then later as it is taking a lot of time to progress.

Time is not on our side, every minute counts in the race to get a transplant completed.  In saying this, if you are a donor of a kidney or any other organ, you need to know that time is of the essence for the receipient, there is no time to waste, no time like the present.  Think of something that you would have wanted done yesterday, this is what your receipient is feeling.  Although it is not all about the receipient, the donor needs to know that the receipient is not in good health, in dire need of the transplant; whereas the donor doesn't really feel the uregency since they are not sick and going through the everyday stress wondering if this is their last day off of machines. 

Nobody can predict the future, anything can happen to anyone at anytime, driving to work, going to swimming lessons, going out for supper, etc.  But we can as human beings can care about one another to give. Give blood, give support, give organs, give love.  It's called humanity.  It's in YOU to Give!


Deuteronomy 15:10Give generously to him and do so without a grudging heart; then because of this the Lord your God will bless you in all your work and in everything you put your hand to.

Happy Halloween Testing

Yesterday I need my 24 urine test, and wow did I think I wasn't going to have enough room in that jug, I did but barely.  I brought that into the lab this morning and the technician looked at it with widened eyes.  After that I had to do another urine test and then 1 more vial of blood.  So we wait again!  Sounds like a waiting game doesn't it, it sure feels that way as well!

Have a Safe and Happy Halloween!

Pass Out

Today I went for my first Phase bloodwork, had to fast for 12 hours, did a urine sample, then they took 16 viles of blood (in which I felt faint and nausea from), and then they had to do an ECG.  The technician was fantastic, taking care of me every step of the way today.  And for those of you who know me understand that I needed that.  The second part of the testing comes next week, keep a look out for that post!

Results are In

Glucose results are in, and they are CLEAR for diabetes!  Feel on ttop of the world!  They called to say we're moving on.  They were going to send me the requisitions in the mail, whic I requested to have everything done via email since I want this to MOVE!  They sent me some papers in which I had to sign to get them to start emailiing, but that is all done now, and I have my First Phase testing Requisitions in hand to officially start the testing. 

What is Glucose?

Today I went for the mandatory testing for Glucose!  What is Glucose it is to check if I am diabetic, or borderline diabetic.  My mother was a diabetic (late onset) and because of that they need to rule this out.  The test involved a blood test, then to drink a thick drink, wait 2 hours and then have another blood test, that's it!  Simple!  Now we wait again for those results!

Thank you to my awesome family for getting up early and coming to sit with me while I waited, you both are so awesome and loved!

A Visit Downtown - More Education

Another visit today to the Transplant hospital.  Had a Doppler Ultrasound to be done, which came back normal.  This test is done to provide the surgeons assurance that the iliac arteries and strond, unclogged and free of disease.  This artery is what the new kidney will be attached to in the abdomen of the receipient. 

We then met the Transplant Nephrologist, he filled us in on the risks involed, what the best is for Ken.  He said Ken is overall a helathy guy (except for the kidney failure), and that a transplant would be his best option at the moment since he is so healthy.  He also said that if he is to start dialysis and cannot get a living donor to come forward the chances are of getting a deceased donor are very low because of his blood type.  He informed us that there are many more things they can do to the receipient when a living donor is invovled as there is time to do it, whereas a deceased donor there is only a 24 hour lifspan on the kidney to transplant it.  He also explained that Ken would most likely wait well over 10 years for a deceased donor kidney, which at that time his health may be to poor to have the transplant.

Because the process of our donor is taking so long, Ken will have to start tests over again, normally by now the transplant has already ocurred (or a date has been set for surgery).

We definitly need him to get a transplant soon!  As always, Hoping, Praying & keeping Faith!

A Journey Through Kidney Disease

It's been almost a month since I last blogged.  It's been a crazy month, with a lot happening.  But now down to more thinking about kidney disease and the fight my husband takes each day.

I came across an amazing story today, think out of everything I have read it brought the most real answers of the road from diagnosis to transplant recovery.  Amazingly written and pictures to make it that much easier to follow.  Click here to read all about this exceptional journey into someones struggle with Kidney Disease and someone's kind, unselfish heart that makes this story that much more meaningful.  To know there are people out in this world that are so giving of themselves (literally) amazes me.  So read A Journey Through Kidney Failure it will amaze and inspire you, believe me!

Transplant Assesment Finally

Transplant Assesment Team received my questionnaire and blood type, and finally received a call to say we're moving on to the next step!!!  So excited!  Now to wait to get my forms in the snail mail!

Blood Type Back

My blood type is back and we're a match, at this stage!  Having faith that these matches will continue as we move along this long but worthy road!

Blood Type Importance

Did you ever realize the importance of your blood type?  Well I realized now!  My husband needs to find a match for a kidney donor, more now then ever and I am taking the steps forward to do so.  The first step is to know your blood type, which I do not know.  I have an appointment today to get that blood test done so I can find out.

1 Thessalonians 5:16-18Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.

Time

Can you imagine that for 14 months someone was going to help save your quality of life?
Can you imagine having time ripped away from your life in an instant?

That's how it felt tonight!  For just over a year we have had a willing donor of a kidney. The process has been extremly slow.  Not knowing exactly how this process works made us believe this is how it is.  Now we have learned that it shouldn't be this slow, unless the tests are being booked by the donor as they should etc.  This came into our minds in June, when we spoke to the donor, asked openly if they still wanted to do this, and the answer was, "Yes, I'm just scared"....this went onto July, when face to face was asked the same questions and we received the same response.  On August 30th after visiting with the Social worker at the transplant hospital they explained how to approach the donor, so it was done again that same evening and the answer was the same, "Yes, I'm just scared."  Understandbly so, we understand the scared factor.  Scared for us is to be hooked up to a machine 3 times per week, 4 to 5 hours a time, that for us is scary and to watch the body deteriorate from there, that's a scary thought. 

Nonetheless we move on from there.  Today we went to the regular routine kidney clinic appointment to find out that the creatnine levels have gone up again.  The nurses were very concened and when the Dr didn't mention his concern about it, we asked him about what he thought of the creatnine level.  He said, "I'd be worried if I saw this number and you didn't have a donor, but since you do we'll work with it."  This prompted us to contact that donor today.

We explained to the donor the situation that had happened today.  And the donor went on to mention needing to work because of money and needed the weeks.  We went on to explain that surgury wouldn't be until they were not working anyway, which then brought out a whole other conversation, about not sure if they could go through with it.  The reason behind it is the welfare of the donor in the future which the concern was made by their child.  Neither one has been educated, been to social working, nothing. The donor has merely had a blood test done and urine sample.Understandably we know there is concern for anyone going to do surgury for anything.  But what bothers us isn't the fact that they most likely will back out, it's the way this has been drawn out.  In April testing had started on the donor, and it has been nothing but stalling, we walked on egg shells, trying not to pressure, giving the out at anytime, always asking the questions and making the statement, "If you don't want to we understand!"

To hear tonight that not sure if they can go through with it made us extremly upset, and angry.  Stalling in this situation just means that it has taken time from my husbands life.  It's taken nothing from their own. 

My husband looks well, but his numbers don't.  People don't see the numbers only what he looks like.  We'll work with whatever God throws our way, with or without a donation.  Forgiving the donor for backing out can also be done, but we'll never forget what was taken, time.  Time can never be given back.

Praying God will give us strength to get through another hurdle in our lives.

But even when I am afraid, I keep on trusting you - Psalm 56:3

Give the Gift of Life

Today we did the Give the Gift of Life Walk!  Amazing day, weather was great, the turn out was awesome.  Got to meet a donor named Max who shed a lot of light onto what being a donor was to him.  Amazing story, of an amazing person!  If the world had more people like Max around it would be a much happier place! 

The goal to reach in our area was $6,500 we surpassed that to almost $13,000....truly amazing people getting invovled for a great cause.  Hoping this grows year by year.  Gaining funds for the foundation to go out and teach about kidney disease, but also bring major awareness to the community about the disease.

2nd visit

We had our second visit to the Toronto General Hospital (Transplant hospital), it was to go through the social work aspect of the transplant steps.  It was an amazing visit.  We got to understand so much more, the process, the way to afford the rejection drugs for life, the donor side of things, etc.  We left there feeling more at ease, comfortable with everything that will happen during the process.  On our last visit we were a ball of nerves, scared, worried and more, but this one visit to understand things that much clearer made everything calm in our minds.

Amazing is how we feel about this process now!

Care to Donate for the Kidney Foundation?

Click on the link to take you to donate for something that will benefit from someone we know at somepoint in our lives! Give the Gift of Life Walk 2012

Sponsor for the Gift of Life Walk 2012

First Visit To Transplant Hospital

We visited for the first time last week the Transplant Hospital.  We were excited, nervous, anxious & overwhelmed.  We got to the hospital with just seconds to spare, Toronto traffic is brutal!! Then to find where we were going we needed directions.  We made it to the first appointment, the blood clinic, 14 viles of blood later and an ECG then off to visit our Transplant Assesment Co-ordinator (TAC). 

When we frist went down we thought that Ken was cleared to be operated on, but that however was not the case, he needs the Transplant Nephrologist to clear him first. We don't see him until October, and we may be in need of more tests for the clearance. In fact, just yesterday we were contacted to get another Echocardiogram completed, and to our amazement is being done this Thursday.

We got up to the transplant floor, which got us quite emotional......it was really beginning!!!!!

At first it wasn't what we expected, we were 3 other families who were going through the same pocess as we were.  We couldn't speak about the details of our own cases, just more of a generalization.  We went through what is taking place prior to a transplant, what happens during a transplant and what happens after.  A lot of details, that were a lot to take in (thank goodness for the 186 page manual) which we've already ready cover to cover.

When we were in the meeting with our TAC, having the other family members there really helped.  They had questions that we never thought of and likewise.  There were certain things that the receipient will have to undergo, that Ken has already had to undergo and he was able to explain how he had felt going through it.  The great feeling about all of it, that we were all on the same page, able to understand eachother as well as help. 

The one question we all had was about our donor's.  What support they will receive?  We all said it's all about the receipient, and she said it is with her since she is working with us, but the assistance the donor gets is as equally involved, which we were all happy to hear.

We were told that the recipient will be in hospital for 10 days, and then will need to return to the hospital 3 times per week for 6 weeks, then they start to reduce the amount of visits to bi-weekly to monthly, etc.  Then the receipent will be on rejection drugs for the rest of their lives, which can cause many side effects.  A kidney transplant is not a cure it's a different way of life other then dialysis, more freedom.

We were also told that the donor is taken in the morning for the operation, and then will remain in the hospital for 3 days, and go back to see the transplant team of dr's a couple times.  They said that the donor receives Laposcopy surgury to have their kidney remove, which is why it takes less healing time.

Overall a week after going to our first visit we feel more at ease.  Immediately after the appointment our emotions were so high, we were frightened of the effects of the rejection drugs & the cost of them, but somehow, someway it will all get sorted out one way or another.  The key to all of this is to be able to live a normal life, free of dialysis.  

All we need is faith, love, encouragement and support and we can get through this.

SURPRISED!!!

We came home tonight from a week away in PEI visiting family.  We were going to write about what an amazing time we had with those we got to spend time with, but instead we are writing about the surprise we came home to......wait for it.....a message from the Toronto General Hospital, in the message she said that she would follow the call up with a letter, so our next step was to rush to the mailbox.  To our surprise there it was.....what does it say you ask?  We are set up for our first appointment downtown with the transplant team.....OMG pinch us, is this moving forward?  Well this Wednesday we have our first appointment, what could be any better then that?  We also have dates that take us into October!!!  Coming back from vacation, feeling that feeling, getting back to the grind, when in fact we're feeling more hope then we have in a long time......is something going right for us?  Amazing, purely, amazing!