Hospital Stay

Our hospital stay at Good Samaritan was a great experience, but not without it's ups and downs. The second day is when the true healing begins. I was warned that this would be a difficult day because they make you get up, walk, and sit in a chair, and the pain is excruciating, even with a pain pump. I was pushing that thing every six minutes as long as they allowed me to.

James was finally brought down to the ninth floor (the kidney floor) by that afternoon. The difference between a transplant recipient and the donor is striking. His IV was the biggest I have ever seen. It had six different regulators all going at once. He had massive amounts of tubes plus the catheter and bag. It's amazing he was able to walk at all! I had just had the regular fluids plus a pain pump. James was able to eat regular food right away while I was finally given soft food by the third day. The biggest difference was that he got a single room and I got to have a roommate.

This roommate I had was an elderly lady. She had been there at least a few days before me. I never quite figured out what was wrong with her but she had a cough you would not believe! The first night after surgery she kept me up all night coughing and then she got out of bed and started wandering around, almost fell down. The next day, people would call me to find out how I was doing and she thought I was talking to her. She would yell at me through the curtain and think I was the nurse or that I should call her nurse. I finally started talking back trying to tell her where the call button was and how to turn on the TV.

The nurses there were fantastic. As I said, the second day was tough. I had a hard time going to the bathroom after the anesthesia, and my nurse had a hard time helping me. My roommate's nurse was Nathan and he had this knack of getting me up and down without hurting. I would wait to go until she called for him and then asked him to help me. After a while he started checking in on both of us. By the end of the day, I was just asking for him. My nurse finally came in to help him with me and said, "I need to learn your trick. She won't let anyone else touch her now!" That was very true. He was great.

The third day, I got off the pain pump, and things got easier. I was put on a super Ibuprofen and it finally took the pain away. Nathan was still the other ladys' nurse, but he helped both of us when he could. James also really liked his cute nurse, so we both had our favorites. This was Thursday and that night, my mom-in-law and I went into James' room and watched American Idol together. Everyone on the floor thought James and I were very cute. It's rare enough to have husband and wife, but even more rare for them to be just a few doors down from each other, young and cute that we are.

The doctors wanted me out Thursday night, but I talked them into discharging me the next day after they let me have real food and get out of bed by myself. Mom-in-law was staying in Guest lodging just one building away and that's where I went Friday afternoon. James followed by being discharged on Saturday.

Surgery Day

We had been told to be at the hospital a 5:00 am on March 8. James, myself, and my mother-in-law were all there, although we were about 10 minutes late. The waiting area around registration was packed full of patients and families waiting for surgery. Every few minutes someone in scrubs would come down, read off a few names, and take a group up to pre-op. By 7:00 am, there was just us and another couple left. We started talking to them and found that their surgery involved the same group of doctors that did our surgery.

After sitting there for 2 hours, we finally realized that we weren't the first surgery of the day after all. I'm not quite sure why they asked us to be there at 5, but oh well. We pulled out our favorite card-game, Rook, and started half-heartedly playing. I called my transplant coordinator and found out that we were second in line for the day.

A little after 8:00 am they came to get us and it was like winning the lottery! We got up to pre-op and they let James and I be next to each other. There became some confusion about which doctors were going to perform the surgeries and that was the only time I really got nervous. Dr. Cashman performed my mother-in-law's surgery, and had been treating James, knew his brother, basically our whole family. He was supposed to my my doctor! I don't know how they worked it out, but he came through for us and I was so relieved. I put a lot of trust in his hands.

We like Dr. Cashman because he is compassionate, aggressive, but also has a sense of humor. When he came to see me before surgery he asked if I had any questions. I only really had one and I wanted to know if my kidney went right into James and if not, where did they put it. He responded that they have up to 6 hours to get it into James, but it wouldn't be that long. "In the meantime, we put it on ice in a bucket. I move my beer to the side to make room for it."  I laughed and thought, "What a kidder." Then, not 5 minutes later, the O.R. nurse passed through my room to get paperwork and was carrying a 5 gallon bucket full of ice that read "KIDNEY" on the side. I couldn't believe it! I exclaimed, "Is that where my kidney goes???" She looked down, and basically ran out of the room. We all just burst out laughing.

My surgery was at 11:00 am, but James' wasn't until about 2:30 pm. I was glad I was first. I finally got scared when they wheeled me down the hall because I did not want to see the surgery room. I don't think I could have handled that. They gave me twilight medicine to make me fuzzy. I remember getting wheeled to just outside the O.R. doors, where they scrubbed in. They had to stop me to let another patient through and that is the last thing I remember until I woke up in recovery.  I guess I was in recovery for a few hours, but I only remember waking up a few times and there was no one around. There must have been a nurse around, but I never saw one. My mouth was incredibly dry from the intubation tube and it also gave me a fat lip.

From what I've heard, as soon as they hooked the blood supply from my kidney up to James', it started working. We had heard it could start working at a minute, but mine was immediate. The surgeon told my nurse that my kidney was "beautiful" and she had never heard him say that before. James had carried so much fluid without having kidneys for 6 weeks, that my little kidney started working overtime and he went through six catheter bags the first night alone. We call it "Liquid Gold".

James came out of recovery smiling and waiving to him mom, but when she came in to see me, I wouldn't even move. I was afraid to move because of the pain. I've never experience pain like that and was pushing my pain pump every six minutes. I would watch the clock. Bless his heart, James walked down 2 floors from ICU that night to see me. He looked so different. I could already start to see color in his face and he just looked amazing. At that moment, I didn't care what kind of pain I was in because it was worth it to see him and know I had saved his life.

Last Night

We have made it! It is now the night before the big day. Kim, James and I drove down to Phoenix yesterday. It was tough saying goodbye to the kids, especially LJ who is only 2 and doesn't know why mom and dad are leaving. The girls are taking this all very well. I explained to them that it's ok to be nervous. We are all nervous, but we aren't scared. Daddy and mommy are going to be just fine.

We took our time driving to Phoenix and had a nice last meal. We stayed the night at a little hotel on the hospital grounds. It's really just a hallway of rooms inside a medical plaza, but it's right next to the hospital. We will be staying there again when we get released.

We got a great call first thing this morning saying that not only are James and I totally compatable, but also that our surgery has been moved up to 7:00am. That means we need to check in at 5:00am. I'm so glad we don't have to sit in pre-op all day.

James and I are nervous, but mostly just grateful that this has worked out and it almost over. "Tomorrow, tomorrow, I love ya tomorrow..."

Preparations

My mom Claudia flew in yesterday. She has come to take care of the kids while James, Kim, and I are down in Phoenix. It is so nice of her to come and having her here has really made it seem real. This surgery is really going to happen! James is at dialysis for the last time here right now. He is scheduled one more time at a center in Phoenix on Monday.

The three of us, James, Kim, and I are leaving on Sunday so we can take our time and relax before this. On Monday I am on a liquid diet and James has to eat light. Then neither of us are to eat on Tuesday. We check into the hospital at 11:00 on Tuesday. My surgery is scheduled to start at 2:30 and then James goes in at 4:30. He has to wait in that pre-op for a long time, poor guy. 

Just a few more days now!

Hurry Up and Wait

March 1 has come and gone. It was difficult to not spend the day wishing we were in the hospital. Who actually says that? It's just so hard knowing this could have been all over today if I had gotten my wish, but I didn't. Hopefully now that today is over, it will be easier to look forward to next tuesday when we really will be in the hospital. At least that is for sure.

I say hurry up and wait because I know that this week is going to just drag on and on. James goes to dialysis in the morning and only two more times thereafter. We have actually heard that every day of dialysis can take up to 5 years off your life, it is that hard on your body. It is not the solution. James is being brave, though, and I really admire him. People are calling me a hero and I'm so grateful to be able to give James my kidney, but he will always be my hero for enduring his PKD.

How I Became a Kidney Donor - Part 3

On Tuesday night we announced to everyone that we were doing this and that it would be on March 1. That is the date we had been hoping for, but by Wednesday morning, the chances of that faded away and I was devastated yet again because we were so close, yet so far. I called and asked the living donor advocate if there was anything I could do that day, but she said no and she would be doing everything on her end for us.

Wednesday slowly dragged on because James had to be really careful with his diet since he couldn't have dialysis until Thursday and we were just on edge, not knowing what would happen. Somehow we passed the time because it finally became Thursday. Thursday was huge because our biggest hurdle was meeting with the surgeon, Dr. Cashman. He was the one who originally did not want me as the donor because he "Doesn't want to put both parents under the knife,"

We were afraid that he might say no, but actually I was able to plead my case to him and he jumped on board just like everyone else had. He is really nice and saw that I am very healthy and motivated, and ready to do this. He saw from my CT SCAN that my left kidney is the best, so that is the one they are going to take. He showed me what he will be doing during the surgery.

They will put one probe in right under my ribcage and another, with the camera, on the side. Then they will cut a three inch incision through my belly button and pull the kidney out through there. It's not a very big kidney, just the size of my fist, but it will be a great one for James. They will reattach the kidney on James' right side by his hip.

The surgeon then looked at the schedule and the 1st was not available, but he said he will do it on March 8. A few new arrangements had to be made, but we are all very happy with March 8. James and I together met with the team one more time this morning to get our picture taken for the scrapbook and to get our transplant books with instructions on what to do before and after surgery.

In 5 days I went from being the sad, frustrated and helpless wife of a kidney patient, to being the strong and tough kidney donor. It has been quite the transformation. There is hope again and I cannot wait for 10 days from now when I get to give my husband that gift that only I can give.

How I Became a Kidney Donor - Part 2

On Monday, Feb 20, first thing, I called up the transplant committee. They oversee the donors and recipients for all organ donations. They, of course, knew all of us very well and when I called and explained our situation they were very understanding. I told them that I had cleared my schedule for the rest of the week and I was willing to do whatever it took to get through the process quickly, because it is a process.

The first thing they did was schedule my blood test. I had to be fasting and had eaten half a piece of toast at 6 AM, so I had to wait 8 hrs after that, but it did work out luckily. I knew that James and I had the same blood type, but they also had to check everything about me to make sure I was healthy enough. Then they scheduled me to come in on Tuesday and to meet with everyone. You sit in a little room and person after person come in from their perspective backgrounds, ie, finance, social work, nutrician. They each tell you what to expect with becoming a donor. The truth is, as they like to point out, there is all risk and no reward for the donor, except that you are saving a life.

For me that is not to true because I get to have my wonderful husband back. I don't have to watch him suffer anymore. My children get to have their father back and hopefully someday soon we will get to move on with our lives together. That's all I have ever asked for, so getting to be the person that makes that happen is actually an honor.

After everyone there cleared me to move forward I spent the afternoon going back and forth between James' hospital room and the tests downstairs. I had to have an EKG, a chest X-RAY and a spiral CT SCAN. James pushed himself to get out of the hospital and he was discharged by Tuesday night.

How I Became a Kidney Donor - Part 1

I didn't want to write daily this week even though I could have because I was overly emotional and I didn't want that to come out in my writing. It really started two weeks ago with a stressful week and we weren't able to get the surgery date scheduled how we wanted it. Every day was a ticking time bomb as James was getting worse every day. The stress of it all finally caught up to him by Sunday morning the 19th. He woke up and was unable to breath, even with his oxygen.

It is what we have all been worried about because since he has no kidneys, every drop he drinks has no where to go and it just builds up inside of him. Eventually that fluid will end up in his lungs and heart. Dialysis is supposed to take that out, but if it doesn't, it can be very dangerous. On the other hand, if he doesn't drink enough, he passes out during dialysis. He was admitted right away once we finally got to the hospital and he was put straight up to dialysis for an extra treatment. His blood pressure was also a problem because it had risen again and was uncontrolled. They gave him new medication, but he doesn't feel like it is working even now.

With James under the hospital's care and me being away from all the family influences around, I was finally able to take a good look at where we were in regards to the transplant and family affairs. On Sunday night I had to make a decision and I believe it has been the right one for everyone. I decided that I needed to step up and be the kidney donor for James. It actually isn't a decision I struggled with because neither of us were going to make it much longer and I knew that there was no one else in this world capable of fighting for him like I knew I could.

It was a shock to everyone on both sides of the family. My dad wasn't happy when I told him, but he has since come around. Everyone has come around, actually, and that is really only because it has worked out so well and that everything has fallen into place.

A new donor

New events have transpired. I rushed through the process today and got a bunch of tests done. I am going to be james' kidney donor. I never though I could be so excited about being a donor. The surgery will be next Tuesday. I can't wait to move our life forward finally!

Dialysis

People are often asking me how a person can live without kidneys. Well, it isn't any fun, but you can survive. Three day a week for 4 hours a day, James has to go to dialysis. If you don't know what that is, it's a machine that, over the course of your treatment, removes all of your blood and puts it through a filter and cleans it. It then puts the clean blood back into your body. A few months ago James had a fistula put into his arm. A fistula is a tube inserted into his vein that enlarges the blood flow. When you put your finger over it, you can actually feel the blood flowing through.
During dialysis they insert two needles into his upper arm, one that takes out the blood and another to put it back in. He has to sit, for four hours, totally still. If he moves his arm at all, the needles pierce through his vein and cause horrible bruises. Personally, I can't imagine how hard that would be to sit totally still for 4 hours. He absolutely dreads it and I don't blame him.
Sundays are the worst days for him because he has to go an extra day between treatments. Today was a particularly bad day. His lack of kidneys has caught up to him today. He is really starting to bloat up and he didn't leave his room all day. I came in to see him and his throat and face is totally bloated. The fluid is really starting to build up. He's having trouble breathing, not to mention that the first thing he did this morning was throw up and then he didn't eat the rest of the day. Poor guy. I know I said this morning that he was hanging in there, but today was bad. Let's all pray that tomorrow is a better day. Love you all.

Setting the Date

I know you are all anxious to know the date of the transplant and we are too. James and his dad drove down to Phoenix on Thursday and the surgeon cleared him to have the surgery, but since then we have run into a delay. I can't say more than that, but we need your prayers that this delay will resolve itself so that we can move forward. James is hanging in there, but it's hard on everyone. We thought we would know by now so that plans can be made. My sister needs to book her plane ticket and my boss and my sister-in-law's bosses need to know ASAP so we can get the time off. There are a lot of things in play that need to be planned and we need a date! Please say an extra prayer for us on this Sabbath Day. We need the Lord now more than ever. I am always grateful for all of you who love us and pray for us. We are so close and we need to push through to the end.

Side Effects

I wrote earlier that we are three generations of PKD and I just want to talk a little about my mother-in-law. She found out she had PKD when she was in her 30's and had the exact same procedures that James is going through right now. She went into kidney failure and had her kidneys out by the same doctors and same hospital. She was 46 when she finally had her transplant and that was coming on 8 years ago. When it comes to her new kidney, she is doing great. It's the side effects of all this that have really taken the toll on her.
A few years ago she developed a very rare side effects to the anti-rejection drugs that all transplant candidates must take. She lost her hair. It was very hard to see because she had always prided herself on her long beautiful hair. It was tough for her, as I'm sure you can imagine. She also has, what one doctor called, "A tortured colon". I can't say this definitively, but I think that is because when they cut her down the middle to take out her kidneys, they also took out her intestines. Those are impossible to put back in exactly the same way and she has suffered terribly because of this. This week it happened again. She just gets agonizing pain and what my mom likes to call, "lower abdominal distress".
It just makes me remember that while we want to think that once he has this transplant, all his problems will finally go away, but there are side effects that he will also have to face. PKD isn't going to go away just because the kidneys are gone, unfortunately.

One Week Down

We are definitely in count-down mode since he is almost 2 weeks post surgery and we came home one week ago today. When people ask how James is doing, I'm not sure how to answer. He is still very sick. Today he was pale and had no energy, but overall I would have to say that his spirits are high and he is fighting through this like a champ. Our goal is to get him out and about at least once a day. Just getting out and walking around really seems to help. Not only is it good for his body, but also good for his spirits to know that there is a whole world out there waiting for him to get better. He is so smart and talented and still has a lot to offer this world and the people in it. I'm amazed at him, as I always have been. He is such a blessing to me and I'm grateful for every day we have together.

Are We Having Fun Yet?

Well, we've only been home for three days and already we are visiting the hospital. It wasn't for very long, but James hasn't been able to sleep since we've been home. Kim and I took him to the ER in Show Low tonight and they found that when he lies down he has low oxygen. When he tried to sleep his oxygen levels kept going up and down. He also has some fluid build-up in his lungs already, the thing we are most afraid of during this time. Doctor Wilson, who was really great, says that dialysis should be taking that out, so let's hope they are able to do that. We had an oxygen machine delivered to the house by the time we got home and are hoping that James is finally able to sleep tonight.
We knew that this recovery time was the most risky and we are counting down until the blessed day when he will finally get his transplant. It cannot come soon enough.

More Holes Than I Thought

I got another look at James' belly and as if one huge cut down the middle isn't enough, they also must have used the laproscopic machines because he has 3 holes on each side, too. Poor guy. It really was a tough surgery and a tough one to recover from.  He got up a lot today, though. He is even starting regular foods tomorrow. The surgeon came in and gave him a checklist he needs to accomplish before he goes home and he is on his way there. I really think we will be home by Sunday.

How He Looks

Before I go to the hospital today, first of all, thank you Greg and Lynette for letting me stay with you all this time. They have been so gracious and kind and it is fun being with the bussle of a household instead of a hotel.
Second, I wanted to describe for everyone how he is looking after a double nephrectomy. Dr. Cashman removed his dressings yesterday and I was able to see the incision. It is at least 6 inches long and since he has never had a belly button, it's hard to guage where the incision is, but it is pretty long straight down his center.  It was a clean cut and the stiches will dissolve over time. The nurse will be instructing me on how to take care of it when we get home.
Underneath the incision are two little tubes that are taped to his belly and attached to an external pump that he has to carry around. These were put in to administer antibiotics and pain medication directly to the site where the kidneys were removed. Then coming out each side is another tube that drains fluids, again, straight from where the kidneys were. They currently are still red, but eventually the fluid will turn yellow and then they will be removed. We may actually go home with those tubes still intact. Of course he also has the IV fluids that go into a Central Line in his neck. They did that so that he wouldn't have to have his arm stuck a million times. That will come out before we get home.
So, he is full of tubes, but eventually these will get removed one by one and it will get easier to get around. He got up 3 times yesterday and also slept a lot, both of which are very good for him. The doctors and nurses are pushing him, but that's what he wanted. I keep reminding him of that so he remembers.
I'm looking forward to another long day, but hopefully a productive one. Thanks again for all the well wishes, thoughts and prayers. You are all with us and it helps so much to have the support.

Out of the ICU

James is doing fantastic. He had his first dialysis last night in the ICU. He was funny about it. When they came in with the big machine they were asking him the standard questions. He stopped the lady and said. "I know about dialysis. I've had it before, I've just never had it without kidneys!"
Today he got up and walked around the nurses desk. He's very alert and pushing and fighting. I'm so proud of him and how hard he's fighting to get better.

He made it!

What a day! He was scheduled for 11, but didn't get in till 2:30. He was in a lot of pain and sick in pre-op, but the doc came in and put us at ease. He did great and is heading for the ice soon.

The day is here

That sounds ominous. Really though,it is nephrectomy day. It's a good thing too because he had another cyst burst yesterday. Time to get these awful things out! Please pray for him and the doctor today surgery starts at noon.

Feeling Fussy

Tonight we are getting ready. I am feeling fussy. I am running around doing laundry, getting the kids' clothes laid out and packing my bag. It has been an emotional weekend for all of us, but now we are ready to move forward. I don't blame anyone for freaking out because i think it was good in a way for everyone to get all their feelings out. In such a stressful time as this, i think it was bound to happen. I have been walking around with a fake smile on my face, but internally I have been in turmoil. I deliver the mail and that is a lot of time alone on the street thinking of all the good and bad things that could happen, all the whille pretending nothing' wrong.
We have asked for a lot of prayers and I know all of you have been offering them on our behalf. That gives me so much comfort. I am feeling peaceful tonight because it is in the Lord' hands now and there is nothing more I can do. I have faith that we will be taken care of.
James and I head to Phoenix tomorrow after dialysis. His surgery is on tuesday at 10:00 am. I will keep updates coming as much as I can.

Back in the saddle again

I love the movie "Sleepless in Seattle" and that is my favorite song. We are back in the saddle, well actually the hospital. James had an incident at dialysis where his blood was clotting in the machine and they weren't able to give him all his blood back. That caused him to pass out. It also made him very sick. There was blood in his urine that came along with a fever. The nephrologist advised him to come to the ER.
I got home from work at 6:30, put James in the car and drove the two hours to Flagstaff. He got admitted that night and put on the normal regimine that we have grown accustomed to. It seems like every little thing makes him get infections. He probably just needed oral cipro, but the doc wouldn't just prescribe him that.
Instead, we have to be away from our kids. i had to beg some church members here to take me in because the hospital refused to let me stay in his room. James was trying so hard to stay out of the hospital until his surgery in three weeks, but it seems we are back in the saddle again.