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.