Thursday, February 2, 2012

Surgical Consult

Tuesday morning at dialysis Anthony got to see Dr. Paul. Doctors only visit the clinic on a rotating schedule on Mondays and Tuesdays. Dr. Paul said the radiologist who took Anthony's X-rays at the hospital now thinks that his kidney failure is congenital. Meaning, he thinks it's been going on for much longer than we had ever imagined. He is basing this theory on Anthony's loss of bone density. According to the x-rays he's lost a LOT of bone density and that it had to have been happening for quite some time, we just didn't know. They are saying this has been caused by Anthony's parathyroid that is excreting hormones that eat his bones. Now he has to take another pill in the evening to suppress the parathyroid from kicking out all that hormone so his bones can regrow and he can begin to recover. The doctor even said that his foot pain, for those who know, that has not allowed him to run for years may be reversed! Meaning: he may be able to run again once his bones are restored! Now that was super news to Anthony's ears! 
Tuesday afternoon we went up to Lenoir for a surgical consult with Dr. Bast for Anthony's stomach catheter. This is so he will be able to do dialysis at home instead of sitting in the chair 4 hours, three times a week. This catheter will be in his abdomen, with tubing in his peritoneal cavity. It is different than dialysis at the center because it doesn't deal with his blood at all. This will put fluid into his peritoneal cavity and as it cycles at night, the lining of the cavity will allow for the toxins to be kept in the fluid so it can be drained out and discarded. From what we understand, this will be an overnight process. About 8 hours a night. Every night. There will be a dialysis unit that sits beside his bed and is plugged into him. Then there will be tubing that carries toxins out that runs to the toilet. 
Hopefully this will still allow him to sleep easily. He's not a terribly good sleeper anyway, but since starting dialysis his insomnia has already improved. Of course we had tons of questions. The catheter in his jugular that runs into his heart will be kept for several weeks. The surgeon said there are several reasons: they need to be sure the peritoneal dialysis (PD) is working and will do blood testing to check; we have to be sure it's something Anthony wants to do. If he hates it, he'll need to use the catheter into his heart again. He just had the stitches removed from that but it is still uncomfortable and is what's causing most of his pain and trouble. He's hoping it won't have to stay the full 3 weeks after the PD catheter is placed. 
We asked about taking a shower. He can't get it wet still, so he's showering with the hand-held kind so he keeps it dry. The surgeon said this PD catheter will need to be kept dry for 6 WEEKS!! That's a realllly long time without a nice hot shower! How do you take a shower/bath without getting your stomach wet?! Dr. Paul at the hospital had said probably about 10 days, then Dr. Bast said 6 weeks. Yikes! I doubt Anthony waits that long. He said total knee patients weren't even that restricted so he figured he'd probably be Ok too. I was concerned about New Baby Girl and whether Anthony will be able to get out of bed to help when she gets here. I wondered how long it would take for him to unhook/hook-up if I needed an extra set of hands. Dr. Bast said the unhooking process is pretty quick and easy, then he'll be able to stay unhooked for a short period of time before becoming uncomfortable. The hook-up process will take longer, he has to clean it all again and use "clean technique" with gloves and such. He said that could take as long as 30 minutes each time. Ant's not sure it'll take that long. He has done wound care as a therapist for years now...and he is very comfortable with the process of keeping things clean.
So for now, Anthony has an official "pre-op" appointment Friday morning to fill out paperwork and such. He is scheduled to have the outpatient surgery at Caldwell Memorial Hospital on Monday, February 6. We don't know the time yet, but we are sure it will be early. He will go straight from the surgical procedure to his dialysis center. There they will begin his training process. Next week he has to go to the dialysis center all day, every day for training. We think he's going to have to do the PD there at the center with them until they're comfortable and feel sure he can do the whole process himself. Needless to say he will not be working next week.
He worked a full day Monday and Wednesday of this week. Yesterday he had a really good day and came home feeling like his old self. He was peppy, energetic, and feeling good. So for now, his last day of hemodialysis, with the blood, is Saturday. Beginning Monday he will use his PD catheter to begin PD at the dialysis center and be trained all week. After that he should just be able to do PD at home every night and have a regular, normal schedule. He should be able to go back to work full time, providing he feels well enough. No more missing two days of work and half a Saturday. Hopefully this will allow us all to feel like things are getting back to "normal."
He has requested the information and materials for a kidney transplant. There is a wait time while the proper channels are followed and then there will be a huge packet of information in the mail that will need to be filled out. After that Anthony will have several full evaluations to ensure that he is a good candidate to receive a donor kidney. Once he's been through the blood testing, tissue testing, psychological evaluation, financial evaluation, and all the information they need is gathered we'll know what kind of kidney we're looking for. This will enable his friends/family who are interested to be evaluated as potential donors. They will also have to undergo thorough testing of the blood, tissue, psyche, and finances. We'll keep you updated as that process continues.
For now, the only way to answer most of your questions is: "We're doing Ok." Every day is different, every dialysis is different, and we're living together day to day. We're not making long-range plans, other than the birth of our child in 7 weeks. (YIKES!) We have to live in the moment, take each day as it comes, and help each other. Please continue to pray for us. Not just Anthony, but our whole family. This is a strain on everyone for many different reasons and we all appreciate your prayers. We certainly feel them, and I definitely need them! Thanks for your love, support, and help. We appreciate all you have done for us so far and can only be humbled in our thanks for your help. 


Anonymous said...

Hey Kyla, you don't know me but my sister Kamie goes to church with you and told me a little bit about your story. I just wanted you to know that I have been thinking about you and praying for your family. Last June my husband had to have heart surgery for an anuerysm on his aorta. I was about 15 weeks pregnant when he went in to the hospital. Things didn't go as expected and he spent a little over a month in the hospital. No one knows for sure what happened but something cut off blood supply to the right side of his heart and organs started shutting down. He had a device implanted in his right side and was kept sedated and paralyzed for 10 days to let his heart rest. It was the hardest thing I've ever been through. During all this he had to be put on dialysis and at first there wasn't much hope that his kidneys would come back. We drove back to Charlotte a few times even after he was released from the hospital for dialysis. His creatinine levels were as high at 10 at times. Long story short, kidneys returned and now his levels are about .8! I know your husbands situation may not be exactly the same but just know that God still works miracles and we will be praying for your family. My husband still has to go for check up for his heart but slowly things are getting back to normal and we have a beautiful 2 month old baby girl now. I know how you feel and even though we don't know each other if you ever need to talk to someone who kind of understands what you are going through, contact me anytime or find me on facebook!

Shauna Wyatt

Ren, Anna & Tristan said...

Thank you for your update! I have been wondering. I wanted you to know we have been praying for ALL of you. The first thing Ren said when I told him about your situation was "Can I give him one of mine??" :) We love you...keep us posted on everything that happens.

Catie said...

I love you. All day. Every day. God's got this under control. (((((hug)))))

Lynette Ryhal said...

Your family remains in my thoughts and prayers!

Kyla and Anthony said... guys are so precious! Tell Ren to send his kidney on over! :) Thanks for thinking of us, and continuing to keep us in your prayers. I certainly need them!

Shauna...Your post is very much appreciated. I know our lives are changing forever.

erin4209 said...

I think we could make Anthony a tutu out of shower curtain and duct tape it to him when he wants to shower. No problem. Too bad I would probably fail the financial consult to be a donor ;) HaHa!! Hang in there friends.