October 30, 2014
A quick update for anyone still reading these posts. Today marks one week since I have had to go up to Emory in Atlanta, so I am excited about that. It seems like I was up there daily or weekly since last January. My labs last week were the best seen since 2013 and I am guardedly hopeful they will continue that way. This week also marks the first week I can actually tell I feel just a little bit stronger than I have in a long time. I have a long way to go to get my strength and stamina back to baseline, but feel I have "turned a positive corner." I appreciate everyone's positive comments and assistance. It has been very helpful! Thank you so much!
September 13, 2014
Sean continues to heal up in Atlanta with frequent med changes as the doctors attempt to get med dosing correct. He is having a "borderline to mild early stage of rejection" for which the doctors are NOT concerned at all, as this can be part of the medication adjustment process. The treatment is to increase a couple of meds, one just a mg but the other goes from 5 to 100 mg. No worries though, the biggest problem is that it keeps Sean in Atlanta longer, for continued frequent monitoring, but luckily this is all being handled as an out patient.
September 4, 2014
One week out - Sean and Kyle are both doing great! Sean is still in a lot of pain but his labs are looking pretty good and each day he feels a little better. Thank you again for all of your well wishes and support!
August 28, 2014
Sean received a kidney yesterday and up to this point we have not shared much about the donor due to his request for privacy and desire no one make a big deal out of his unselfish act. However, now that the transplant surgeries have been completed, we are excited that Sean's donor, Kyle, will finally let us brag about him.
Kyle Lythgoe and Sean first met in 1992 during grad school at The California School of Professional Psychology. While Kyle tends to downplay the traits that caused him to be a consistent role model for other students, Sean remembers Kyle was very well liked, an excellent problem solver, and had an extremely busy, yet well balanced life. Kyle arrived at school already married to the love of his life, Rhonda. Prior to graduation, they adopted a baby girl, Becca. Her adoption was followed by the adoption of two boys, Beau and Chase.
Kyle has not slowed down. He is an officer in the Army National Guard, is the clinical director of several behavioral health programs at a VAMC (one that is run efficiently), and still manages to ensue both his immediate and extended families know they, along with God and Church, are priorities.
In January, long before we realized just how quickly Sean's kidneys were going to fail, Kyle offered to get tested with the understanding his kidney may have been filled to excess with Diet Mountain Dew. Understanding the "risk," Sean accepted the offer. There were plenty of times during the evaluation process that if it were not for Kyle's assertiveness, the evaluation may not have been completed because Emory was in the midst of chaotic programmatic changes. Furthermore, due to Sean's disease progression, surgery had to be rescheduled several times. Kyle's commitment, all the way from South Dakota, was unwavering. For example, sandwiched between the surgical pre-op and surgery, Kyle took Becca to college in Utah.
Long before Kyle "went under the knife," he had already made countless sacrifices of time and garnered the support of his employer and family, to whom we are also appreciative. With the gift of his kidney, I become eternally grateful to them all. Kyle is a genuinely good person in all areas of his life. He has not made these sacrifices for attention, material gain, or for any reason other than to save the life of a friend. That friend is me, wanting more quality time with my own wife and son.
Why did Kyle do this for me, I wonder-- a lot. Kyle is already an honest person who walks the walk and is a role model for what I wish all of humanity, including myself, could be. When asked, Kyle simply says "We were a match so it was meant to be." However, I could never have guessed that making a friend almost 25 years ago would literally save my life, physically and emotionally.
Glinda sums up my feelings very nicely in the musical Wicked. She sings, "I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you...
Who can say if I've been changed for the better?
But because I knew you
I have been changed for good."
I hope that Kyle can be an inspiration for us all; not just because he donated a kidney, but rather because he makes the World a better place with many good deeds and numerous personal relationships, all demanding sacrifice. THANK YOU, KYLE! LOVE, Sean, Erica, and Kendal
August 23, 2014
Transplant Tuesday, 8-26th!!!
Sean had a pre-op on Monday. Emory called yesterday and said the transplant is a go for Tuesday! I'll keep posting updates. Thank you all again for your continued support!
August 16, 2014
The countdown is on! We go to pre-op on Monday. Sean is still having some health issues that may delay the transplant, but if all goes well on Monday, only 10 days left!
August 7, 2014
Well, we are back at Emory trying to figure out the source of fevers and possible infection. Lots going on but no answers yet. As of right now, the transplant is on hold (meaning it may or may not have to be rescheduled depending on what they find). I’ll update when I know more.
July 27, 2014
Thank you all, once again, for the continued support. Sean is still recovering from the second nephrectomy at home and getting used to his dialysis treatments three days a week. Overall, he is doing well – still lots of pain and nightly low-grade fevers – but blood pressure and other issues continue to improve. Still waiting for 2nd kidney pathology and a few other things to clear, but the transplant is tentatively scheduled for the last week in August. Fingers crossed. Can’t wait to give lots of positive updates!
July 19, 2014
Sean was discharged from the hospital today. He is still in a lot of pain, but he did much better than the last surgery. Recovery has been easier, with less complications. Sean started dialysis in the hospital and will continue it as an out patient on Tuesday. The date for the transplant has been pushed back because Sean's red blood cell count and blood pressure are too low and time is needed to bring them up.
July 18, 2014
Sean's recovery continues to be slow but steady. He is still having issues with low blood pressure, especially after dialysis, and lots of pain but overall recovering well. If all goes well tonight, we may get to go home tomorrow after dialysis. His transplant had to be moved back a little to give his body time to recover and rebuild his hemoglobin. It will likely be September now.
We are anxious to get home to our snaggle-toothed boy. He lost his third tooth last night and we missed it again because we were in the hospital. We are hoping to be with him for tooth four, which is already loose.
July 13, 2014
We are now a few days post-op from 2nd nephrectomy and while Sean’s spirits and energy level seem better, he is still unable to get out of bed due to intense surgical pain and blood pressure being too low (56/36 – when he stood). Another big issue is that his red blood cells continue to drop (hemoglobin 6.3 today). He has had one dialysis session which went pretty well, but they had to stop a little early due to low blood pressure. On a positive note, since surgery, Sean has not been nauseous and isn’t freezing all of the time anymore (fingers crossed). Thank you for your continued well wishes.
July 2, 2014
We just got word that our donor was approved – THANK YOU DONOR – YOU ARE SAVING A LIFE –WE LOVE YOU!! Hooray!
On to the next step: Sean will have his left kidney out on July 10th and start dialysis. If all goes well he will get a transplant in August or September!! We are all ready for him to be better. Thank you again for your continued support, it makes a real difference!
June 21, 2014
Sean has been out of the hospital for a few days, the doctors reluctantly agreed to let him out as long as he went to the hospital at least every 12 hours for monitoring and IV medications. We meet with a kidney transplant infectious disease doctor on Tuesday, at Emory, who will help make the determination as to the timing of removing his kidney. He is currently scheduled to have the kidney removed on Thursday morning, but if he is capable of waiting, we would prefer to wait until the week of July 7th as both of his main doctors will be out of town for 10 days right after his scheduled surgery. We should know more next week and will update at that time.
June 19, 2014
Sean was admitted back into the hospital for another cyst infection in his left kidney. He will now have to have the left kidney removed next week and start dialysis. We are very hopeful a transplant will occur shortly thereafter, hopefully early August - just in time for Sean to celebrate his 45th birthday!
