Kevin will be part of delivering a free seminar at UVic today on the kidneys, his disease and training for the Tough Mudder while on dialysis.
Andrew Jeffery, a 2nd year Island Medical Program medical student and Dr. E. Paul Zehr will also be discussing this issue.
Thursday, March 29, 2012 at 3 pm in the Medical Sciences Building room 150 at UVic.
Light refreshments will be served.
Check out the poster here and we hope to see you there!
http://imp.uvic.ca/news/2012-mar-27.php
Thursday, 29 March 2012
Thursday, 22 March 2012
Kevin is home in Victoria!
So after a few more procedures, a few more nights of intravenous antibiotics, and one last time in dialysis, Kevin was discharged from St. Paul's today! What great news. We caught the 3 pm ferry for Victoria and headed home.
What a week!
Here are some photos of the last procedure Kevin had:
Jane
What a week!
Here are some photos of the last procedure Kevin had:
Kevin before his cystoscopy
During the cystoscopy
Everything was clear - no problems found in the bladder - good news!
Kevin had a great experience at St. Paul's Hospital overall. Everyone was fantastic and he received great care. Thanks to you all!
Jane
Tuesday, 20 March 2012
Kevin Needs a Kidney!
I just wanted to clarify something, as it seems that maybe we have confused some people with this blog. Kevin came to Vancouver for his pre-assessent for a kidney transplant. This just gets him on the transplant list. It does not mean that he is having a transplant. Far from it.
Kevin's blood-type is O+ and the wait time for a deceased donor in BC right now for his blood type is 10- 12 years.
If he is approved after this visit, then he gets on that transplant list.
Of course, in the meantime, Kevin could get a kidney from a living donor. He needs a kidney to get him off of dialysis. This is a much preferrable option.
I hope this clarifies things.
Consider registering to be an organ donor!
http://www.transplant.bc.ca/pre_livingkidney.htm
Jane
Kevin's blood-type is O+ and the wait time for a deceased donor in BC right now for his blood type is 10- 12 years.
If he is approved after this visit, then he gets on that transplant list.
Of course, in the meantime, Kevin could get a kidney from a living donor. He needs a kidney to get him off of dialysis. This is a much preferrable option.
I hope this clarifies things.
Consider registering to be an organ donor!
http://www.transplant.bc.ca/pre_livingkidney.htm
Jane
Sunday, 18 March 2012
St. Paul's Hospital Becomes a Temporary Home
Wow. I have no idea where to begin this blog entry. So much has happened since the last entry. I guess we talked about the pre-assessment visit and how well that all went and where Kevin was at with meeting with surgeons etc. Wednesday was a good day here in Vancouver. Paul and Kevin got some great work done and Kevin had dialysis here at St. Paul's for the first time. That was a great experience and he really enjoyed the dialysis team and clinic here. Especially the nurse who needled him - Leo. He was great and Kevin and him had a great connection right away.
And then he had to have a lumbar puncture to rule out the meningitis.
We were then sent up to room 7003 on the CTU (Clinical Teaching Unit) and he was on precautions still. This meant that everyone around him had to wear masks and he had to wear a mask if he left the room. This lasted the whole first night.
By morning, the results came back and precautions were removed. No meningitis! This was great news.
He was poked and prodded all day Friday to try to figure out what was going on. He had blood and urine samples taken and then had to head down to dialysis again Friday morning.
Leo was there again to needle him, so they were both pretty happy about that. Leo commented on how different Kevin was compared to when he saw him 2 days before. He was just so sick. Dialysis was not a good time at all. The results from his bloodwork showed that he had a gram negative rod infection. This was not an expected finding. These are usually associated with an infection in the gut - not from his catheter (which is what they suspected). His arm swelled up a bit but luckily his fistula did not burst, he had to get a swab of his catheter to see if this was the site of a possible infection, and he was feverish and sick the whole time. I stepped out for 1 hour to check out of the hotel and when I came back I heard that he had not had a good time at all. He was very sick, had had an episode of Reiger's (extreme, uncontrollable shaking and almost convulsing due to fever) and was not doing well.
Friday ended with lots of doctors and nurses coming and going and plans for many more tests, another CT of his abdomen and some ultrasounds and lots of medication. Some for pain, some antibiotics, some for hiccups, some for acid reflux, some for sleep, heparin to prevent clotting, some for blood pressure, some calcium for eating and on and on...
The nicest thing was a visit from Leo. He came up to say good-bye to Kevin because it was his last day at St. Paul's and he was also heading off to the Philipine's to visit his family. That really meant a lot to him that Leo cared that much to come see him.
Then, they decided to remove his catheter. They thought that it just wasn't safe for him to have an infection and to keep it in. So it was removed and a piece of it was sent off to be cultured.
I should end by saying that Kevin is actually doing much better. The fever and infection seem to be under control, his pain is not as bad as it was and he is on the mend. It's just frustrating to be in the hospital this long, to not be able to eat very well and to have so much happening day after day. The rest will be good though.
-Jane
Pre dialysis
Leo needling Kevin
Thumbs up!
The next day, we went to UBC for the volunteer fair in the SUB. We met the UBC Chapter of the Kidney Awareness Club and Vincent from the BC Chapter of the Kidney Foundation. Bobby and Vik joined Kevin's Tough Mudder team and they are onboard with supporting Kevin on this journey and in raising awareness.
Vik, Kevin, Jane, Bobby and Vincent at UBC
It was nice to meet them all and we look forward to coordinating our efforts to raise awareness with them!
The next day (Thursday) I went off to work, Paul was at home in Victoria, and Kevin headed back to the hotel. I got a phone call within a couple of hours that he was not doing well at all and that he was feeling really sick. I rushed back and took him over to Emergency at St. Paul's. He almost didn't think he was going to be able to walk there. He was feverish (39 degrees!), chilled, his muscles were aching and he was not looking good at all. They sent him straight back to the Acute Care part of the ER and started assessing him.
It started to seem as though he may have meningitis. So we were quarantined within the ER and everyone had to wear masks from then on.
He was sent for an x-ray and then he was sent for a CT scan.
And then he had to have a lumbar puncture to rule out the meningitis.
We were then sent up to room 7003 on the CTU (Clinical Teaching Unit) and he was on precautions still. This meant that everyone around him had to wear masks and he had to wear a mask if he left the room. This lasted the whole first night.
By morning, the results came back and precautions were removed. No meningitis! This was great news.
He was poked and prodded all day Friday to try to figure out what was going on. He had blood and urine samples taken and then had to head down to dialysis again Friday morning.
Leo was there again to needle him, so they were both pretty happy about that. Leo commented on how different Kevin was compared to when he saw him 2 days before. He was just so sick. Dialysis was not a good time at all. The results from his bloodwork showed that he had a gram negative rod infection. This was not an expected finding. These are usually associated with an infection in the gut - not from his catheter (which is what they suspected). His arm swelled up a bit but luckily his fistula did not burst, he had to get a swab of his catheter to see if this was the site of a possible infection, and he was feverish and sick the whole time. I stepped out for 1 hour to check out of the hotel and when I came back I heard that he had not had a good time at all. He was very sick, had had an episode of Reiger's (extreme, uncontrollable shaking and almost convulsing due to fever) and was not doing well.
Friday ended with lots of doctors and nurses coming and going and plans for many more tests, another CT of his abdomen and some ultrasounds and lots of medication. Some for pain, some antibiotics, some for hiccups, some for acid reflux, some for sleep, heparin to prevent clotting, some for blood pressure, some calcium for eating and on and on...
The nicest thing was a visit from Leo. He came up to say good-bye to Kevin because it was his last day at St. Paul's and he was also heading off to the Philipine's to visit his family. That really meant a lot to him that Leo cared that much to come see him.
Then, they decided to remove his catheter. They thought that it just wasn't safe for him to have an infection and to keep it in. So it was removed and a piece of it was sent off to be cultured.
So the catheter also came back with a different infection. He has 2 separate bacterial infections. So the antibiotics were increased.
Early Friday morning he developed hiccups. They have basically been non-stop right up until now. It is maddening for him. This then turned into acid reflux and now he has some damage to his esophagus that makes it hard to eat and swallow - even water.
Saturday morning he started peeing blood and then it was black by Saturday morning. He had right-sided pain that made everyone suspect gall bladder or pancreatitis. He was sent for his abdominal CT and nothing of any significance was seen - more good news.
Today has been a day of lots of rest and sleep for Kevin. He has been getting some good rest.
They would like to keep him here until at least Tuesday, so he will do dialysis here once again. Leo won't be there though.
Kevin has been so grateful for all of the medical care and attention that he has received here at St. Paul's. From the ER team on Thursday night, to the nurses in the CTU, to the people in the dialysis clinic and the expert physicians and fellows on his team, everyone has been kind and helpful and supportive.
I should end by saying that Kevin is actually doing much better. The fever and infection seem to be under control, his pain is not as bad as it was and he is on the mend. It's just frustrating to be in the hospital this long, to not be able to eat very well and to have so much happening day after day. The rest will be good though.
-Jane
Tuesday, 13 March 2012
Pre-Transplant Assessment Trip to Vancouver
After a restless night, emotionally I was exhausted thinking about getting a passing grade at this kidney assessment, my day started out pretty emotional. I shed a few tears about how overwhelming this can all be for one person. After gently putting my emotional state back together, I walked over to St. Paul's Hospital. I went through the pre-assessment tour.
The first part was meeting with a nurse to talk about medications and various parts of my life and health. I was very grateful to have Dr. Jane Gair there with me, not only for support, but to also ask the right questions. She could think of things that I may not have been able to think about.
Next, we went to go see Dr. Gill. He explained all aspects of the transplant process, checked in about my health, explaining the donor process, that the A blood type only has to wait 1-2 years while the O blood type has to wait 10-12 years. This certainly makes it a bit darker when you hear things like this. I could feel myself starting to well up - you start thinking about your future rather than hanging on to your faith.
We learned a few great things. We found out that donors actually live longer than the average person. This is likely due to the fact that they are screened so well and are therefore very healthy people already, but also that they are closely watched medically after the donation. Pretty cool eh?
Also, less then 1 % of the population end up in renal failure and on dialysis. So donors don't have a lot to fear about their own kidneys ever failing in the future.
Also - donors get moved up the transplant list once they have donated a kidney. So if a problem ever did happen - nothing to worry about!
I am a poster child for eligibility for a transplant, due to my fitness and health so this is good news too. One thing that was explained to me was that kidney disease is a vascular disease so my heart has some issues. There is a bit of hypertrophy, so this means that my heart doesn't pump quite as efficiently as it could or should. This means that I will have to see a Cardiologist and think about this when I am training for the Tough Mudder. I will have to be a bit more cautious about my training because of this.
My blood pressure was 140/80 today, so that was good.
After going through all of these assessments today, I felt like I played a couple of football games in a row.
The last part was with a social worker and I was almost falling asleep, but it was good to hear. A donor is up and walking around the day after the surgery and leaves the hospital 3-4 days after. I would be in hospital for 1 week and would have to relocate to Vancouver for 6-8 weeks while they follow me post-transplant.
So hopefully sooner than later, we can start spreading this joyous news about the living kidney donor and hopefully I can find someone willing to donate. One thing to think about is that blood types don't need to match. Anyone can enter into a partner program or a chain where someone can donate a kidney to someone else and then I can get a kidney from someone I may not know and so on. Also, there are drugs that I can take that will help me accept a kidney from someone that is not my blood type.
It would be so nice to not have to be on dialysis 3 times a week anymore. It would be nice to have my normal life back.
We are in Vancouver until Friday so I can complete the pre-assessment process and meet with the surgeon.
The first part was meeting with a nurse to talk about medications and various parts of my life and health. I was very grateful to have Dr. Jane Gair there with me, not only for support, but to also ask the right questions. She could think of things that I may not have been able to think about.
Next, we went to go see Dr. Gill. He explained all aspects of the transplant process, checked in about my health, explaining the donor process, that the A blood type only has to wait 1-2 years while the O blood type has to wait 10-12 years. This certainly makes it a bit darker when you hear things like this. I could feel myself starting to well up - you start thinking about your future rather than hanging on to your faith.
We learned a few great things. We found out that donors actually live longer than the average person. This is likely due to the fact that they are screened so well and are therefore very healthy people already, but also that they are closely watched medically after the donation. Pretty cool eh?
Also, less then 1 % of the population end up in renal failure and on dialysis. So donors don't have a lot to fear about their own kidneys ever failing in the future.
Also - donors get moved up the transplant list once they have donated a kidney. So if a problem ever did happen - nothing to worry about!
I am a poster child for eligibility for a transplant, due to my fitness and health so this is good news too. One thing that was explained to me was that kidney disease is a vascular disease so my heart has some issues. There is a bit of hypertrophy, so this means that my heart doesn't pump quite as efficiently as it could or should. This means that I will have to see a Cardiologist and think about this when I am training for the Tough Mudder. I will have to be a bit more cautious about my training because of this.
My blood pressure was 140/80 today, so that was good.
After going through all of these assessments today, I felt like I played a couple of football games in a row.
The last part was with a social worker and I was almost falling asleep, but it was good to hear. A donor is up and walking around the day after the surgery and leaves the hospital 3-4 days after. I would be in hospital for 1 week and would have to relocate to Vancouver for 6-8 weeks while they follow me post-transplant.
So hopefully sooner than later, we can start spreading this joyous news about the living kidney donor and hopefully I can find someone willing to donate. One thing to think about is that blood types don't need to match. Anyone can enter into a partner program or a chain where someone can donate a kidney to someone else and then I can get a kidney from someone I may not know and so on. Also, there are drugs that I can take that will help me accept a kidney from someone that is not my blood type.
It would be so nice to not have to be on dialysis 3 times a week anymore. It would be nice to have my normal life back.
We are in Vancouver until Friday so I can complete the pre-assessment process and meet with the surgeon.
Me on the ferry from Victoria to Vancouver
At the Kidney Pre-Transplant Clinic at St. Paul's Hospital
Relaxing after an exhausting day at St. Paul's Hospital
Sunday, 11 March 2012
Susan Jacks concert/ organ donor awarenss event in Victoria
Team Embody Life Fitness helped represent me at the Susan Jacks kidney foundation benefit concert at UVic in Victoria, BC, Canada last night. We wanted to show our appreciation for Susan stepping forward and raising more awareness and funds for the kidney foundation. Every time we go to these events, we recognize all of the ways that we can be involved as a team in helping this issue. We observed the silent auction to prepare for our own upcoming silent auction on May 5, 2012. More details to come. We had a great opportunity to share this new video:
We shared it with Susan Jacks' manager and team, with 98.5 Ocean radio station here in Victoria and with the BC Chapter of the Kidney Foundation.
Thanks so much to Susan Jacks' manager, Esmond Shong for allowing us the opportunity to meet with her in a special VIP reception after the concert. It was very gracious and kind of you. We look forward to future collaborations with this team to get the awareness about the donor situation in Canada out there. We want to change things so that all Canadians are born donors.
I had the privilege of speaking with and meeting Susan and telling her my story of how I got to this point of being on dialysis and that I definitely appreciate the hope that she shone on my story as I don't have a kidney donor and I am waiting - sometimes it gets pretty dark, but I have to remain positive. Hopefully at some point someone will come forward with an O blood type kidney to save my life.
Really enjoyed the music, all of the band members and the special guests that came in to sing. It was a real privilege and an honour to come in as someone with my illness and enjoy it with my Embody Life Fitness team. Thanks to everyone who came out - Jane, Ricki, Wendy, Elissa, Spiro, Daphne, Susan, Keith and Nicole!
We shared it with Susan Jacks' manager and team, with 98.5 Ocean radio station here in Victoria and with the BC Chapter of the Kidney Foundation.
Thanks so much to Susan Jacks' manager, Esmond Shong for allowing us the opportunity to meet with her in a special VIP reception after the concert. It was very gracious and kind of you. We look forward to future collaborations with this team to get the awareness about the donor situation in Canada out there. We want to change things so that all Canadians are born donors.
I had the privilege of speaking with and meeting Susan and telling her my story of how I got to this point of being on dialysis and that I definitely appreciate the hope that she shone on my story as I don't have a kidney donor and I am waiting - sometimes it gets pretty dark, but I have to remain positive. Hopefully at some point someone will come forward with an O blood type kidney to save my life.
Really enjoyed the music, all of the band members and the special guests that came in to sing. It was a real privilege and an honour to come in as someone with my illness and enjoy it with my Embody Life Fitness team. Thanks to everyone who came out - Jane, Ricki, Wendy, Elissa, Spiro, Daphne, Susan, Keith and Nicole!
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