Meet the new "Us"

Wow!  It has been a year since I last posted to say that we were expecting our first child.  Well he is here and is already 10 months old!  We were blessed with a beautiful baby boy named Ryker. 

The past 10 months have gone by so quickly.  My delivery was very long and just as I feared Dwayne did have to miss dialysis to be there for me.  Once Ryker was born Dwayne had to rush off to dialysis and it was so hard for him.  Ryker was born under distress as we had a hard delivery and he was placed in the NICU ward for the first 12+ hours of his life.  Dwayne felt like his heart was being ripped out when he left the hospital that morning...as the week went on it got harder for him to go and on one morning during the first week he arrived at dialysis in tears and a panic...he told his nurse he just couldn't be away from us that day and they arranged for him to go home. 

Since then we have settled into a routine.  Dwayne still does his dialysis 4 days a week but it is hard on him a lot of days.  He gets home eager to spend time with Ryker (who is more mobile and more energenic as the days go by!) and finds most days he just needs to lay down and try to find energy to be able to play with him.  I will be going back to work in April and Dwayne will be the "stay at home Dad"...it will be hard, we have switched his dialysis to the evenings during the week and have found a balance between our schedules so that we do not require daycare. 

This past year has been incredibly hard financially and without our families I don't think we could've made it.  With Dwayne being on disability and me on maternity leave we just scraped by.  Dwayne continues to hope to get back to work as time will require us to have money for sports, school and all of the other things kids require. 

One of my other fears was to have Dwayne go into the hospital once Ryker was born.  How would I juggle that?  In the past I would be at the hospital with Dwayne from early in the morning (7:30am) to late at night (sometimes as late as midnight).  Dwayne had to have surgery to remove more of his parathyroid in December.  Ryker was only 7 months old, but he was such a trooper.  We did spend a lot of time at the hospital for 4 days, but we were able to make it work.  We got a good laugh too when Ryker pulled Dwayne's IV right out of his arm!  It is a reality that Ryker will see a lot of hosptial rooms in his life as we look after Dwayne's health.  It is hard because it is not an ideal place for a baby to be, especially when they are learning to crawl and walk. 

Sometimes there are moments where I feel like I am the only one...dialysis isn't like a job where if there is an emergency or special circumstance you can take the day off if needed.  Dialysis is necessary for Dwayne to be with us.  Ryker did have to go into the hospital over the New Year and we stayed on the pediatric floor for 4 nights.  We were in isolation and I had to stay in the room with Ryker at all times unless someone else was there to watch him.  Dwayne still had to do dialysis, so I really had to look after this on my own.  This was also hard when I first got home from the hospital as most Dad's can take the first week or two off when their child is born...I was a really new Mom with hours to spend alone with Ryker 4 days a week, and as hard as it was on me I know it is really hard for Dwayne to not be able to be there every time he would like to be. 

On a more positive note, Ryker was the best decision we ever made :)  He brings a smile to our face every day, even when we feel there is not a lot to smile about.  He gives us a reason to get up and keep going.  We are so lucky to have this sweet little boy. 

I hope to be a little more faithful at posting now that life has more of a routine, and I hope to share the challenges we have as a new family with dialysis in our lives. 

Thanks for reading!

Change...

I alluded to the fact that life might be changing for us in the near future…

I may have already known that we were expecting when I wrote that comment.  Dwayne and I will be welcoming our first child into the world with an anticipated due date of May 20th, 2011.  This is really exciting for us as most of our news coming from doctors contains “doom and gloom” this time it is great news.

With this come worries however, most of which we really scrutinized before making the choice to start a family. The number one concern which never gets discussed ~ what if Dwayne dies? I know, horrible thought, but a serious concern for me, especially after the awful life expectancy talk. I decided it was more important for me to have a child with Dwayne with the likely chance of raising it together instead of waiting for the right moment and potentially never having children, and more importantly, never having a child with Dwayne. I know that Dwayne and I will both be here to raise this child, but sometimes you have to talk about the hard things before you make a lifelong commitment!

The other decision we now have to consider is do we go ahead with any risky procedures we had previously discussed. Will he be too sick and tired to enjoy his new baby? Do we attempt it before baby arrives? Do we wait until baby is older? Do we just go for it? Many things need to be considered. We are planning on going to Vancouver next month and hope to walk away with some answers.

Other things we have considered are how Dwayne feels on a daily basis. Will he have enough energy to raise a child when I go back to work after maternity leave? What about when he gets admitted into the hospital at the last minute for a 4-day stint (or longer, its happened!) It isn’t feasible to bring a baby to a hospital from 7am-midnight like I would generally do. Even most recently with the pain in his arm ~ he told the doctor it needs to feel better as he has to hold his baby in 3½ months. Most people think about financials, daycare, lifestyle change when considering starting a family. We thought about those things too, but for those who wondered what took us so long to start a family, you can see we had some big things to think about.

On the brighter side…we are VERY excited to have a little de Ruiter in May and can’t wait to see the joy this baby will bring into our everyday lives and our families.  Stay tuned!

The weekend of surgeries, delays & disappointments...

Well the emergency surgery that was to take place in October was delayed. It turns out lack of communication resulted in Dwayne not being able to have the pre-surgery scans he needed due to allergies to the contrast die for the scan. Unfortunately our hospital system does not go through the same interview process as the hospitality industry as the secretary that was to rebook things for Dwayne was “too busy to deal with it” when he called after a couple of weeks of waiting for a call. To make a long story short it took Dwayne’s fabulous specialist to get involved and he was finally booked for a surgery on November 10th.

November 4th I took Dwayne into emergency with a very painful arm (his fistula). It was not making any noise, and we could not feel the “thrill” as it’s called. When we got to emergency we were told it was clotted. Dwayne then spent the next 4 days in the hospital. The original surgeon and his secretary had held off too long to rebook the initial appointment which is why Dwayne’s fistula clotted, it just didn’t get the treatment it needed fast enough. While in the hospital his first procedure was delayed and delayed until finally they did a 2.5hr procedure on his arm to try and remove the clot, but it was too late. They then did an emergency “perm cath” which is a tube inserted near his collarbone into his artery. The tubes come out of his chest so that they can hook up dialysis. This was Dwayne’s worst nightmare. Any chance of fixing his arm was lost when the surgeon continuously postponed the surgery all weekend and in the end Dwayne had a graft put into his arm next to his old fistula. This graft is made of a Gore-Tex/Teflon type material and it was placed inside his arm. Dialysis is now done through the graft. Dwayne just had the tubes removed from his neck last Thursday and they are using the graft on a full time basis.

The performance of the graft has become a concern. The dialysis staff will be testing the new fistula to see how it is working. The result so far is that Dwayne’s potassium is very high. This is hard on his body and can potentially cause very serious problems with his muscles and heart. We will see what the results of the testing will bring and hope that Dwayne will be feeling better soon.

It's been a while...

Well summer has come and gone, the days are shorter and darker...

We successfully did a few trips this summer.  Dwayne was able to do dialysis in Calgary, Abbotsford & Powell River.  Too bad we couldn't collect airmiles!  All in all it was fantastic to have some time away.  As much as dialysis is a nuisance while traveling it is nice to be able to spend time with friends & family.

Now that fall has settled in we continue the rise & fall of Dwayne's health.  He is coming back from quite a dramatic weight loss which had me quite concerned and they have been balancing out his dry weight.  If I haven't described "dry weight" before it is Dwayne's weight without any fluid on board, his ideal weight.  Every time he goes to dialysis he has to weigh in.  This weight tells the nurses how much fluid he has above his dry weight (ie. everything he has drank, every ounce of fluid retained from food etc.) as Dwayne does not get rid of fluid like the rest of us.  The dialysis machine then filters out that fluid, as well as takes out any toxins and hopefully brings him back to that dry weight.  So if the dry weight is incorrect (too low) he can suffer really bad cramping in his legs, hands, feet but if the dry weight is too high he will have too much fluid on board causing problems with the fluid building up around his chest (very painful, makes it hard to breathe).  This was the battle we faced the last couple of months but it is starting to stabilize now. 

Dwayne is also having problems with his fistula (the vein/artery in his arm where they insert the needles).  It appears there is a clot which means he is going in for emergency surgery within the next week or so.  This is VERY painful afterwards as his arm is so sensitive and he has to continue dialysis following the surgery pretty much right away.  It is times like these I realize how tuff my softy husband is!

There is one more surgery being planned and that is to go back into Dwayne's neck.  It looks like they will have to remove more of his parathyroid.  This too is a painful procedure as Dwayne literally gets cut right across the neck!  (He will tell you it was when he was playing hockey and some guys skate got him in the neck...boys-insert eye roll).

So that is the latest...we will tackle these things before we meet with the doctors again to discuss options for a transplant.  Life is changing for us so we shall see what is on the horizon!

Don't Shoot the Messengers...

I must try to remember that the people delivering the bad news don’t enjoy saying it anymore than I enjoy hearing it.

We just met with the transplant team at St. Paul’s and have a much better understanding of where things are at. We didn’t really learn anything “new” but more we had the opportunity to speak with a new doctor that spoke our language. The result ~ we now understand the look of pity we have been receiving while at these visits.
 A few months ago Dwayne met with his specialist in Victoria that deals with his dialysis. Dwayne and I have always understood that dialysis is what keeps you alive and going when your kidneys fail, and that you may feel like crap a lot of the time but that there is no “life span” on dialysis. In a round about way the conversation came up of “life on dialysis” and more specifically how crappy Dwayne had been feeling. That is when the Dr referred to the general lifespan of someone on long term dialysis in Dwayne’s condition, speculating that reaching the age of 50 could be a challenge. ((insert deep breath)) We did not know that there was a life span placed on dialysis patients. Of course hearing this was emotional for both of us, but then we snapped back to reality and thought “this is the worst case scenario and just a speculation…this isn’t us.” This is when I began the blog, began the search for the perfect kidney donation, paired exchange candidate and began looking at the support we’ve received from the St. Paul’s team and really questioning everything and anything to make this situation better.

Then we went to St. Paul’s…

We may have been a bit naive in thinking that a transplant was likely to happen…let me rephrase that…I may have been a bit naïve…Dwayne is always too realistic. Don’t take this as I’ve given up hope…deep down I know Dwayne will have another transplant…probably just not the way I anticipated it. The short version of the story is still the same…his antibodies are too high…the chances of him matching a donor’s blood type and antibodies are virtually impossible. The 2% of the population we keep referring to…well we were a bit off…that is 2% of the “B blood type” population ((insert deep breath)) so…what does that mean now? We still need “B blood type” donor options, we are still looking the same way we were before, only now the difference is what they will do to Dwayne to make it happen.

We will revisit this in 6 months, but the probability is that they will filter out the antibodies in Dwayne’s blood and give him new plasma. This is a dangerous time for him as he will be removing all of the antibodies in his blood that keep him from getting sick. Once they take the antibodies out to a point of matching a donor, they will do the transplant. He will then be placed on an intense amount of medication and will spend 6 months being poked, prodded, and monitored beyond belief. He will likely feel like garbage during this time as the drugs will be pretty intense. If he and the kidney get through the first 6 months together…then there is a chance it will work for a few years!

Us at the Hoover Dam just outside of Las Vegas this February 2010

So where things stand now…we revisit this in 6 months to decide if Dwayne wants to take the risks involved in removing the antibodies. We then wait to see if we have a donor that matches his blood type. Once we do he would begin the procedure and go from there. None of this would take place right away and at this time we will just continue with life the way it is right now…

Travel on Dialysis

Not as easy as one would think...
Dwayne and I have not done a lot in the way of traveling because there is just so much involved in making it happen. 

First, we don't travel abroad...in the States alone we would be looking at around $1000 per run.  I believe we would get a portion ($200) back from the government but it really adds a solid cost on to the travel arrangements.  Dwayne also can not purchase travel insurance, so if something were to happen to him on dialysis, well...let's not think about it...

We can travel within Canada as our health care works across the country.  No complaints there, we are very fortunate that is the case.  Booking dialysis in Canada is like booking a popular resort (only not as fun!)  Most larger hospitals may have a bed or two reserved for people traveling, but many locations do not have any extra beds at all.  Calling in to these hospitals you generally put your name in to hold space should it be available.  Our experience has been that you never really know if the space is confirmed until a month before, at that time you should learn if you get the space or not.  Even if you get the space we usually don't find out the times until a few days before.  Makes it a little hard to plan!  Driving is our mode of transport as we can not rely on the dialysis dates to book a flight, and we can't rely on flights to get us where we need to be in time for dialysis.  Thanks god we love road trips!

Once all of this is organized I tend to relax.  Not Dwayne.  I won't get into details, but prepping for a trip to another facility is NOT fun.  It involves testing for the "Super Bug" which for lack of a better word makes him feel pretty violated!  He has to argue pretty hard with the nurses to conduct that test himself.  He has to carry his EPO in a little cooler and has to ensure that all of his labs are up to date and that the nurses have faxed the loads of paperwork back and forth before we go.  Then there is the stress of being in a new facility with different doctors and nurses...kind of like your first day at a new school or new job, but not as exciting. 

That is the process ~ as much as it hinders our adventurous sides we are pretty excited for this summer.  We are off to Calgary for a week with 3 runs in a facility there...then we head home to Powell River where we managed (by miracle of all miracles) to snag one of the three beds in that facility for one day.  This is the first time in 3 years we will be able to stay more than 2 nights in my home town. 

So the next time you travel, be thankful for the ease in which you can book your flight, the vast number of locations you can select from and the freedom to plan whatever you like with no other commitments!  We are thankful for the assistance we received from Dwayne's amazing nurses to assist us in getting our vacations this summer!

"When will he be better?"

A question we get a lot is "When will he be better?"
The short answer ~ when he gets a transplant...but the more accurate answer is this is something Dwayne will live with for the rest of his life.  Even after his previous transplant he took a cocktail of pills in the morning and at night to keep his body from rejecting the kidney.  He will always need to go to specialists for regular blood work to ensure things are in working order...but all of that is a joy compared to living his life without that transplant, which is why "the transplant" is the short answer.

The next question is quickly followed up with "I thought his sister was a match?" 
Well, yes she is...but there is more to it this time around.
Dwayne's body has built up a tremendous amount of antibodies.  There were the antibodies developed with the last transplant as his body tried working with a foreign organ.  There are also the antibodies developed after he had so many blood transfusions when he was sick.  The trouble for Dwayne now is that the "perfect match" is not as easy as his sister matching him.  The antibodies are very aggressive in his system and want to attack anything foreign (his blood beats up her blood - and you think it ends when they grow up - haha) making a transplant pretty difficult.

So where does that leave us for options?
Well, for any of you Grey's Anatomy fans...you may remember the ultimate kidney transplant when they had a number of patients that were willing to switch kidneys with each other?  In Canada this is referred to as the "Paired exchange program".  Basically, we need friends, family, strangers that are willing to give up a kidney for Dwayne to first be cross matched with him (you never know, you could be one of the 2% in the population!) and if that person does not match Dwayne, then they can register on the paired exchange list for Dwayne.  This information will then run through the system across Canada hopefully finding a series of "connect the dots".  One example is of a man who was willing to donate to a person in Vancouver, he matched a person in Calgary, whose wife matched a person in Toronto, whose spouse matched another person in Toronto, who matched the original patient in Vancouver.  Confusing?  Not for the transplant teams.  They ensure that all of the surgeries happen at the same time, flying the organs to the designated cities and instead of helping just one person (ie. Dwayne) suddenly at least one other person if not a chain of people get their dream of a transplant filled too!

How does this impact the donor?
Well ~ the transplant team and website have a far more detailed answer...but my "non medical" version is this.  Minimally, if at all! 
Many people can live with just one kidney.  In fact, I read recently that there are quite a few people born with just one kidney and it may never be discovered because it just doesn't cause a problem.  The prescreening is so extensive to rule out anyone who may have potential health risks where donating a kidney may not be in their best interest.  I believe the one risk is a heightened blood pressure, but again, this is part of the prescreening process.  I can not stress enough that the team at St. Paul's is thorough in their testing, but also in the information they give potential donors to ensure that any decision made is a well informed one.

The last bit I have time for today is to note the contact information...

Donor nurse coordinator ~ St. Paul’s Hospital

604 806 9027

donornurse@providencehealth.bc.ca

Thanks for taking the time to read my long winded post today!  Still working my way around the "blogging" world and appreciate you reading what I have to say!