Everything looks great! Patrick's levels have been stable ever since his plasmapherisis in late June, and the surgery was three months ago, on May 14. Patrick sees a nephrologist every couple of weeks, and has blood labs regularly. His doctors have said they will watch him especially closely, given the complicated nature of his disease. They said that the kidney should have a healthy life of at least 10 years. He's feeling well again finally! And taking a hefty amount of medication for anti-rejection. It's such a blessing to see Patrick have an opportunity to heal and recover. Right now, no news is the best news!
I'm doing much better than I was in June!! And simply amazed at the body's ability to heal itself. After my surgery, it took exactly 6 weeks to feel back to "normal" again- just like they said it would at UNC. The only thing I have to complain about now is scar tissue- and I'm looking into PT for help with that. It feels so good to be back on my bike, in the woods, and on my yoga mat again.
Since the second half of 2013 has rolled in, I've felt a deep sense of peace and calm for the first time in a while, and I hope and pray for abundant blessings for all as the seasons change this year. The harvest time is almost here! August is my favorite month- my birthday month. There's still plenty of time to enjoy summer, and carry on as life gets more exciting when school begins again and I turn another year older. If all goes as planned, this will be my last year of school EVER AGAIN, as I should complete my masters degree at UNCG next May. Celebration will be in order! And already is.
Friends and family, You are a blessing to us, Patrick and our family, for the tremendous outpouring of love and support. There are no words to express our gratitude for the love that we've received. Thank you for giving so much of your energy, love and time to take care of us through the illness and the surgery. It certainly has been a group effort! Lots of love to you all~
Kate
Thursday, August 15, 2013
Thursday, June 13, 2013
One month post-transplant
Hello all!
Tomorrow is the one month anniversary of our "bean swap." I apologize for not posting more updates or keeping in better touch after receiving so many uplifting messages and calls. We feel blessed beyond words for the outpouring of love and support, and will be eternally grateful for all of the care and concern.
The first three weeks after the transplant, Patrick's new kidney is functioning better than was expected! He is peeing now a lot, since his body is cranking out urine after 2.5 years on dialysis :) Now that he is taking immune-suppressants, he has to be extremely careful about his diet and surroundings. The great thing is that he is now off of the dialysis diet, which was really strict and ruled out a lot of otherwise healthy and nutritious foods. He's felt so much better with the new kidney functioning, it's like his body is just thriving on it. So he has more energy, and recovered really nicely from the surgery.
About a week ago, Patrick was given a lab report indicating that his disease is starting to come back and affect the function of the new kidney. Its called recurrence and it means that the disease (FSGS) has started to move into the transplanted kidney. This has always been a possibility-and while it is disappointing it is not a surprise. The good news is that it was caught very early on-before serious damage has been done to the kidney. AND most importantly-there is a treatment that can be performed that has worked to stop the recurrence and allowed patients to keep their kidneys for years. This treatment is called plasmapheresis and will take place 6 times over 2 weeks.
The health care team has told us to stay positive at this time! Once again we are asking for positive thoughts, prayers, love and light to lift him up and stop the recurrence from progressing. Patrick asks that you also remember his family, close friends and loved ones as they are invested in his health and wellness. Thanks to all who are involved, your support has, does and will make all the difference.
Tomorrow is the one month anniversary of our "bean swap." I apologize for not posting more updates or keeping in better touch after receiving so many uplifting messages and calls. We feel blessed beyond words for the outpouring of love and support, and will be eternally grateful for all of the care and concern.
The first three weeks after the transplant, Patrick's new kidney is functioning better than was expected! He is peeing now a lot, since his body is cranking out urine after 2.5 years on dialysis :) Now that he is taking immune-suppressants, he has to be extremely careful about his diet and surroundings. The great thing is that he is now off of the dialysis diet, which was really strict and ruled out a lot of otherwise healthy and nutritious foods. He's felt so much better with the new kidney functioning, it's like his body is just thriving on it. So he has more energy, and recovered really nicely from the surgery.
About a week ago, Patrick was given a lab report indicating that his disease is starting to come back and affect the function of the new kidney. Its called recurrence and it means that the disease (FSGS) has started to move into the transplanted kidney. This has always been a possibility-and while it is disappointing it is not a surprise. The good news is that it was caught very early on-before serious damage has been done to the kidney. AND most importantly-there is a treatment that can be performed that has worked to stop the recurrence and allowed patients to keep their kidneys for years. This treatment is called plasmapheresis and will take place 6 times over 2 weeks.
The health care team has told us to stay positive at this time! Once again we are asking for positive thoughts, prayers, love and light to lift him up and stop the recurrence from progressing. Patrick asks that you also remember his family, close friends and loved ones as they are invested in his health and wellness. Thanks to all who are involved, your support has, does and will make all the difference.
 |
| Patrick and Kate after the successful kidney swap at UNC in May. |
Wednesday, May 22, 2013
Surgery Successful!
The kidney swap was successful and Patrick and I are both doing wonderfully well after the transplant. We could not be more grateful or more pleased with the outcome at this point. It's been a week since the surgery and Patrick's new kidney is doing great! It literally started working while he was still on the operating table, which is the best case for a transplanted organ. There are numerous indicators that the doctors will be monitoring closely for an ongoing period of time, such as lab work and dietary/liquid intake measurements, weight, and medication cycles. He may still require additional plasmapheresis or dialysis if his blood/urine levels show a discretion, and so we are not to be worried if he does end up needed continued treatment. For now, doctors are leaving the dialysis access catheter in his chest in case it is needed in the near future. Hopefully, he'll be showing more signs of improvement, and be getting it out soon. Watching him heal from the surgery, accept his new kidney and regain his color, strength and energy has been AWESOME!!!
I apologize for not updating the blog sooner. While I was in the hospital, in the first days after surgery, I tried to recruit a few people into updating it for me, but that didn't ever happen, and I've just now been feeling up to returning phone calls and responding to email. My recovery is definitely going more slowly than Patrick's, that was to be expected. I am still taking medication around the clock and not able to lift more than ten pounds. It is difficult to live with so many limitations and have to ask for help. It is very humbling. In the next week, as I settle back in at home, I'll work on posting some more news about our recovery as well as some pics from the hospital, and write some thank you cards to the friends and family who are and continue to be by our sides, who bless us with their presence, and for the presents, letters, and donations that have been made in out honor. THANK YOU for your love and light.
always,
Kate
I apologize for not updating the blog sooner. While I was in the hospital, in the first days after surgery, I tried to recruit a few people into updating it for me, but that didn't ever happen, and I've just now been feeling up to returning phone calls and responding to email. My recovery is definitely going more slowly than Patrick's, that was to be expected. I am still taking medication around the clock and not able to lift more than ten pounds. It is difficult to live with so many limitations and have to ask for help. It is very humbling. In the next week, as I settle back in at home, I'll work on posting some more news about our recovery as well as some pics from the hospital, and write some thank you cards to the friends and family who are and continue to be by our sides, who bless us with their presence, and for the presents, letters, and donations that have been made in out honor. THANK YOU for your love and light.
always,
Kate
Sunday, May 12, 2013
Countdown to May 14 :)
From last week's fundraiser, the Raven Rock Ramble 100k bike ride, to the OR bright and early on Tuesday morning, the month of May is off to a hell of a start! Though we were not able to ride in the RRR (our docs forbid riding even 10 miles in a "victory lap"), being out there with countless of organ recipients and donors who are competitive athletes was incredibly uplifting and inspirational! Now we have just 24 hours to go until the transplant, and we're laying low, taking care of each other, resting up and visualizing a healthy and successful "bean swap."
After the surgery was postponed in March, it's been challenging as the date grows closer this time to proceed with cautious optimism. We are aware that at the very last minute, something could change, and the surgery is not garuanteed to happen on Tuesday morning. That, and the fact that the outcome of the surgery remains unknown, are the main concerns that we face as we head into the transplant process. We are not afraid of the surgery, or lying on the operating table, being in the hospital, or recovering. It is a tremendous blessing to have this opportunity and we are grateful for every moment, every chance, every breath and every smile that bring meaning into our lives.
In the next few days, updates will be posted on the blog, as well as on FB and email by our friends and family, particularly by Patrick's girlfriend, Rhiannon, and our FB friends. Mom and Dad will need lots of love and support, so please send it to them and keep us in your prayers!
love and light to you and yours~
in peace,
Kate
After the surgery was postponed in March, it's been challenging as the date grows closer this time to proceed with cautious optimism. We are aware that at the very last minute, something could change, and the surgery is not garuanteed to happen on Tuesday morning. That, and the fact that the outcome of the surgery remains unknown, are the main concerns that we face as we head into the transplant process. We are not afraid of the surgery, or lying on the operating table, being in the hospital, or recovering. It is a tremendous blessing to have this opportunity and we are grateful for every moment, every chance, every breath and every smile that bring meaning into our lives.
In the next few days, updates will be posted on the blog, as well as on FB and email by our friends and family, particularly by Patrick's girlfriend, Rhiannon, and our FB friends. Mom and Dad will need lots of love and support, so please send it to them and keep us in your prayers!
love and light to you and yours~
in peace,
Kate
 |
| HUGE THANK YOU to everyone who donated and supported our involvement in the Raven Rock Ramble. The event raised approx. $20,000 for direct patient services at the UNC Kidney Center. For Patrick and I, the opportunity to meet other recipients and donors at the bike ride was invaluable. These new friends are friends for life! |
Thursday, May 2, 2013
Getting ready! Following doctor's orders...
Hey Folks!
Everything looks good for the transplant for now. After our close call in March, we've been cautiously optimistic about the surgery happening on the new date, May 14. But as that date gets closer, we are encouraged that Patrick's blood pressure and titer levels are stable and he is beginning a series or plasmapheresis, to strip his blood of antibodies, and immune-suppressant drugs this week. We both need to stay healthy for the next two weeks, and stay clear catching a cold or the flu, and even risk factors for injuries.
For that reason, it's been recommended by the transplant team that we both refrain from riding in the Raven Rock Ramble (RRR), the annual bicycle and skating fundraising event for the UNC Kidney Center. You might hear a story about this event in the news, it's very popular with the avid cyclists and skaters in the area. Our friends, Linda and Tim, are even coming down from Asheville to roller-blade a 30 mile section of the coarse! We are very proud of them, and a little disappointed that we won't be able to ride even the ten mile loop this year, but our surgeons say that it is an unnecessary risk, and since the surgery is only one week after the event, we should both save our energy for the transplant. But don't worry- next year we'll be putting some serious rubber down on the road!
Thank you to everyone who's made a donation to the RRR. We're still accepting donations, as a volunteer team, at the link:
http://www.active.com/donate/RRR2013/UNCkidneytransplantd
It is such a blessing to be able to carry on with the transplant, and to have the opportunity for Patrick to regain his kidney function! I don't need to tell anyone what a miraculous and precious thing it is to appreciate good health after it's something you've lost. Given that there are no guarantees that the transplant will be successful, we remain cautiously optimistic. And we thank you for your prayers, from the bottom of our hearts, and hope that you all receive the many wonderful blessings of friendship, love and health.
We will continue to share the news of our transplant here and on FB as well. Thank you for your support!
with love,
Kate
Everything looks good for the transplant for now. After our close call in March, we've been cautiously optimistic about the surgery happening on the new date, May 14. But as that date gets closer, we are encouraged that Patrick's blood pressure and titer levels are stable and he is beginning a series or plasmapheresis, to strip his blood of antibodies, and immune-suppressant drugs this week. We both need to stay healthy for the next two weeks, and stay clear catching a cold or the flu, and even risk factors for injuries.
For that reason, it's been recommended by the transplant team that we both refrain from riding in the Raven Rock Ramble (RRR), the annual bicycle and skating fundraising event for the UNC Kidney Center. You might hear a story about this event in the news, it's very popular with the avid cyclists and skaters in the area. Our friends, Linda and Tim, are even coming down from Asheville to roller-blade a 30 mile section of the coarse! We are very proud of them, and a little disappointed that we won't be able to ride even the ten mile loop this year, but our surgeons say that it is an unnecessary risk, and since the surgery is only one week after the event, we should both save our energy for the transplant. But don't worry- next year we'll be putting some serious rubber down on the road!
Thank you to everyone who's made a donation to the RRR. We're still accepting donations, as a volunteer team, at the link:
http://www.active.com/donate/RRR2013/UNCkidneytransplantd
It is such a blessing to be able to carry on with the transplant, and to have the opportunity for Patrick to regain his kidney function! I don't need to tell anyone what a miraculous and precious thing it is to appreciate good health after it's something you've lost. Given that there are no guarantees that the transplant will be successful, we remain cautiously optimistic. And we thank you for your prayers, from the bottom of our hearts, and hope that you all receive the many wonderful blessings of friendship, love and health.
We will continue to share the news of our transplant here and on FB as well. Thank you for your support!
with love,
Kate
Tuesday, April 9, 2013
Kidney Transplant Coming Soon!
Hello family and friends,
Just want to share the good news that the transplant has been scheduled again for Tuesday, May 14, so we are back on track. Waiting for this surgery to happen has been prolific, and we still believe that everything happens for a reason. I feel ready for the donation, and finishing out the semester is really good timing. Patrick is beyond ready for the transplant, and we know from our experience counting down until the initial surgery date that our support network of friends and family is rock solid. It's such a blessing to have each other.
We have been given another awesome opportunity this spring- to ride in the Raven Rock Ramble bicycle race to raise money for the UNC Kidney Center on Sunday, May 5. The ride is an annual event, in the state park at Sharon Harris, that benefits direct patient care, and organized by director David Cole, who received a kidney transplant from his sister, 12 years ago. They're both doing really well! David is a lifelong cyclist, and his vision of passing on the gift of life through his passion and sport is truly an inspiration.
Patrick, his girlfriend Rhiannon, and I are going to ride the 10 mile track, but the race itself goes to 100 miles of terrain. For us, it's about giving back, and empowerment, and a positive goal to feel strong, fit and prepared for the transplant. Training for 10 miles may feel too strenuous for Patrick right now, and if so, no matter, because after the surgery, there will be many more opportunities to race, ride, hike and climb again.
If you'd like to contribute to this cause, you can make a donation to the Raven Rock Ramble at http://www.active.com/donate/RRR2013/UNCkidneytransplantd. You can chose to be an anonymous donor or be listed, and you can leave a message for Team Patrick in the comment box. So far, the race has raised about half of its goal- about $1,400 out of $3,000.
Thank you always for your continued prayers, love and support. It means so much to our family. We'll be keeping the blog updated for the final countdown and when the surgery happens. May this spring bring a shower of blessings to all.
yours truly,
Kate
Just want to share the good news that the transplant has been scheduled again for Tuesday, May 14, so we are back on track. Waiting for this surgery to happen has been prolific, and we still believe that everything happens for a reason. I feel ready for the donation, and finishing out the semester is really good timing. Patrick is beyond ready for the transplant, and we know from our experience counting down until the initial surgery date that our support network of friends and family is rock solid. It's such a blessing to have each other.
We have been given another awesome opportunity this spring- to ride in the Raven Rock Ramble bicycle race to raise money for the UNC Kidney Center on Sunday, May 5. The ride is an annual event, in the state park at Sharon Harris, that benefits direct patient care, and organized by director David Cole, who received a kidney transplant from his sister, 12 years ago. They're both doing really well! David is a lifelong cyclist, and his vision of passing on the gift of life through his passion and sport is truly an inspiration.
Patrick, his girlfriend Rhiannon, and I are going to ride the 10 mile track, but the race itself goes to 100 miles of terrain. For us, it's about giving back, and empowerment, and a positive goal to feel strong, fit and prepared for the transplant. Training for 10 miles may feel too strenuous for Patrick right now, and if so, no matter, because after the surgery, there will be many more opportunities to race, ride, hike and climb again.
If you'd like to contribute to this cause, you can make a donation to the Raven Rock Ramble at http://www.active.com/donate/RRR2013/UNCkidneytransplantd. You can chose to be an anonymous donor or be listed, and you can leave a message for Team Patrick in the comment box. So far, the race has raised about half of its goal- about $1,400 out of $3,000.
Thank you always for your continued prayers, love and support. It means so much to our family. We'll be keeping the blog updated for the final countdown and when the surgery happens. May this spring bring a shower of blessings to all.
yours truly,
Kate
 | ||||
| At Via Ferrata, Nelso Rocks Preserve, WV 2010 |
Wednesday, February 27, 2013
Re-schedule, Re-set for spring
On Monday morning, Patrick went to see the transplant surgical team at UNC for a check-up, and was told that the surgery will need to be postponed indefinitely because his blood pressure is too low. Our understanding is that since October (when he had two seizures due to high BP), the medications that he has been taking to stabilize his blood pressure have actually caused it to steadily decrease, and that his meds now need to be adjusted and re-stabilized before the surgery can take place. He also needs to be quickly weened off the Dilantin that he has been taking for seizures, and is now under the supervision of a pharmaceutical team and has a follow-up appointment in two weeks. At the earliest, the transplant could take place in April. Finding ourselves back in this position of uncertainty is frustratingly familiar. It's a very good thing that the doctors caught this in time. Of course it's very important that the surgery has the best possible chance for success. Please continue to hold Patrick in your thoughts and prayers, shine your love light on him during this transition period, and continue to offer up healing, strength, endurance, patience and grace.
with a grateful heart,
Kate
with a grateful heart,
Kate
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