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!
Wednesday, October 20, 2010
Friday, July 23, 2010
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!
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…
Friday, July 9, 2010
Travel on Dialysis
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!
Wednesday, June 23, 2010
"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...
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
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!
Monday, June 14, 2010
And so it begins...
After a few days of trying to figure out the world of "blog" I am attempting my first post.
Dwayne and I like to think of ourselves as independent. We try hard to handle his health issues on our own, not bringing down those around us. What others consider "so sad" or "so hard" is our regular life. We might be guilty for taking it all on and not really talking about it. This of course drives our families crazy, but sadly has kept us from keeping in touch with people that aren't in our daily circle. Inevitably when catching up with those farther away (or even those in Victoria we don't see often enough) the conversation and questions come up about Dwayne's health. Sometimes I think we feel like a broken record...things are the same, yup, still not great...waiting for a miracle...etc.etc.etc. We always appreciate all of the care and concern, we always appreciate the questions especially as people try hard to understand what we are going through...but for us it just seems hopeless sometimes and we don't like to bring others down with our stories. So to avoid sounding negative, we unintentionally miss out on keeping in touch with some of our greatest friends & family!
I am hoping with this blog we can include those who wish to be included a little more in our life on dialysis! Thank you for all of your support ~ Kris & Dwayne
Dwayne and I like to think of ourselves as independent. We try hard to handle his health issues on our own, not bringing down those around us. What others consider "so sad" or "so hard" is our regular life. We might be guilty for taking it all on and not really talking about it. This of course drives our families crazy, but sadly has kept us from keeping in touch with people that aren't in our daily circle. Inevitably when catching up with those farther away (or even those in Victoria we don't see often enough) the conversation and questions come up about Dwayne's health. Sometimes I think we feel like a broken record...things are the same, yup, still not great...waiting for a miracle...etc.etc.etc. We always appreciate all of the care and concern, we always appreciate the questions especially as people try hard to understand what we are going through...but for us it just seems hopeless sometimes and we don't like to bring others down with our stories. So to avoid sounding negative, we unintentionally miss out on keeping in touch with some of our greatest friends & family!
I am hoping with this blog we can include those who wish to be included a little more in our life on dialysis! Thank you for all of your support ~ Kris & Dwayne
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