Update

Today, my mom and I were in Sacramento, down the street from UC Davis Medical Center, where the transplant center is. We decided to stop in just to see if we could find out anything new, as we hadn't heard anything from anyone in a while. We walked in expecting to have to make an appointment and come back. The receptionist made a couple of short phone calls and said if we could wait about ten minutes, someone would be out to talk to us. We moved the car from the 15 minute parking into the parking garage and came back in. A minute or two later, a lady comes out and introduces herself to us and leads us to a part of the room where we could talk privately. I didn't catch her title but she has worked for the transplant center for over twenty years. She talked to us for almost a half hour, talking to both of us, not just one or the other, making sure to answer any questions either of us had. She was very personable and spoke in terms we could understand instead of all crazy medical terminology. She talked about how the transplant list worked and how the donation process worked, explaining both in several different ways. It was very easy to talk to her comfortably instead of feeling rushed or having unanswered questions. She treated me like a real person instead of a patient or a number/name on a chart, made sure that I was comfortable with what she was saying, and tried her best to see things from my point of view of having to go through all of this. Upon leaving, we didn't really know anything more about where I am in relation to the transplant list but we felt much better about the whole process and understood more than we have before. We were also given a donor information packet that explained things about donating a kidney and were told that someone from the donor system at the transplant center was going to give us a call to answer any further questions or to reinforce what we already found out.

I'm asked at least once a week if I've heard anything new about the transplant list or anything of the sort. I usually just say no, as it is an extremely system and it's not just a numbered list of names that you progress up. They don't call you and say "Hey, you moved up a spot!" Today was the first time I've talked to anyone from the transplant center in months. I usually thought when asked if I had heard anything, that if I had heard anything, I would be in the hospital having the surgery. This isn't necessarily the case as there are backups for the best match, backups for the backups, and all kinds of things. There are several different things that have to be tested and matched for a kidney transplant. There are blood types, tissue types, all number of different kinds of antigens that have to be there or not be there. The lists from each center are put into a registry combining all of the different centers and when a kidney becomes available (as they are not just on a processing line. A kidney doesn't just show up. It has to come from a donor or a person who has died.), the people on that registry are checked against the available kidney to see what different things match that particular kidney. The registry is narrowed all kinds of which ways then and only when people have the same match for the available organ, does the time spent on the list even come into effect. At that point, there are still many different factors to look into, such as if the top match on the list is available to get to the hospital in the set amount of time, have they been sick recently or in the hospital?, is their information up to date? Then the person has to go to the center, get an even more extensive series of tests done than have ever been done before to make sure everything will work with the information from the available kidney. If not, it goes to the backup person, who has to have all these things done, and so on. All of these progressive tests have to be done in a very limited time frame as a kidney for transplant is only able to be used within a very short span of a few hours.

It's not an easy process at all, but the people at the transplant center definitely know what they're doing and although it may feel more comfortable to know that you're a certain number on a list, it certainly doesn't work that easily. The person we talked to today explained this in several different ways and I probably just explained it in a pretty confusing way, but it's a lot to take in at one time. I'm really glad we did decide to stop into the transplant center today, as even though we don't really know anything more than we did before going in about the time I have to wait, I feel much better about the whole process and the donor idea.

Another procedure

Yesterday, I arrived at the hospital at 7:15 in the morning. I was supposed to have a procedure done on my right arm at 9:30. I went into pre-op, got the IV set up, and waited for them to come get me, and waited, and waited, and waited. The nurses/techs came to get me right before 2 pm. I was taken into a room with a bed in the middle and 3 monitors hanging on the left side of it, with a small xray machine over my right arm. I watched the whole thing on the screens through the xray. The doctor numbed the area over the fistula then inserted a wire which he pushed up to my shoulder. Watching that on the monitor and feeling it was quite unnerving, although it didn't hurt, just a little poking. There was a narrowing at the upper end of the fistula that was causing the branches to occur in the lower part. The doctor inserted 3 different sizes of balloons over the whole procedure and blew them up in the fistula. OW OW OW OW OW. He put in a stent to make sure the fistula doesn't narrow again at that location. This all took around 15 minutes, really quick considering I waited for hours.

The doctor says that the branches should go down in a week or two and he wants to see me sometime next week to see how it's doing. My arm stings a bit over the insertion site and kinda pokes me in the upper arm but it's not terrible I guess. I'm glad the procedure's over though. Now I can add right arm fistulogram to my repertoire.

april

I realize I haven't posted anything for over a month now, oops. There's not really anything going on health wise. I've been feeling well over the past month or so and have been relatively stable.

In terms of getting a transplant, it's all about the wait now. I'm waiting the time until they find a match and I'm at the top of the list, which according to the center may be 3 to 5 years. Thinking about being on dialysis that long isn't really appealing, but looking at it another way, it's better than what would happen if I didn't have it, so I think I can deal with it.

The alternative to waiting the time is to get a live donation from a friend or family member. This is able to be done even if the person isn't a match, as the transplant system is set so if someone has a willing donor, they are bumped to the front and a swap can be done with someone else's donor that does match. Getting a live donor would be the best in relation to health and to the wait time, but it's kinda hard to just ask people "Hey, can I get a kidney from you?"

In other news, my best friend is flying out from South Carolina next month, pretty excited for that. I'm still trying to figure out what to major in for school in the fall. I think I'm getting close though.

I'll try to update more often, even if nothing is really going on.

Wahoo

The financial coordinator assigned to my case called me today to answer any questions I have and to let me know that I can call her if anything new comes up.

And

She let me know that as soon as we got off the phone she was going to approve the financial standing for the transplant list, which means that as soon as she did that, I would officially be on the transplant list.

Woohoo!

Update time

This week has been soooooooooooooooooooooooooooooooooooooooooooooo much incredibly better than the past 2 weeks. Physically I've felt almost completely better, my blood pressure is slowly but steadily going back down to around normal, and I've almost got my normal energy level back. Mentally, I've felt much better too, more relaxed, more at ease. It's definitely been a much better week. Getting back to normal finally.

I found out last week that my disability stuff will be starting on the 23rd. Woohoo, finally. It's nice to have some red tape out of the way. I still won't be able to work with it I don't think, but at least it will help me be able to live a little. If I don't have to spend it all on these insane gas prices, that is.

Also, I found out this week that I've been admitted to California State University, Sacramento for Fall. I've been trying to get into various schools for a while now (having trouble with the stupid government budget cuts messing up the acceptance numbers at the schools), and since I can't really be too far from Sacramento for any length of time for the transplant things, this works out extremely well.

I could still use some people to talk to, but this has been a very good week. Keep it up.

Faith

I've always been a Christian and believed in God and Jesus, but all of this that has gone on in the past few months has really made me rely on faith even more. I can't even fathom how someone could make it through all of this without some type of reliance on God.

The physical aspect of it all is rough enough, having tests done, being hooked to a machine for 3 hours every other day after having 2 GIGANTIC needles stuck into your arm. I've been extremely blessed in all of this that that's the only real pain I've had to deal with. Yeah, I said blessed to have two nails stuck in my arm 3 times a week. It's so much better than it would be if I was in pain all of the time, and I have constantly thanked God since this all started that I've been able to get by with just the poke of the needles.

The mental side of things is even crazier. It's a great deal of things to have to deal with. No one ever really expects to be saddled with these kinds of things in day to day life before they're elderly. Going to dialysis and being the youngest one there by far, so much that the social worker whose job it is to relate to the patients can't even relate to you is tough. I try to keep a positive attitude and smile and things like that, but it's really hard sometimes. My family does all they can to help. None of my friends really understand though. I don't expect them to, it's not something anyone would normally understand when they're young. I'm still learning about it all even months later. It's a day to day process. Without my family and faith, I don't know how I'd be able to deal with it all.

I've never really been one to ask why me. I've always accepted since I was a little child that this is just something I'll have to always deal with. Since all this came up last August, I haven't really been angry about any of it at all. What is there to be angry about? It's not like it will help anything. I'm not upset with God for sticking this stuff on me. It's just my situation. Being angry with God wouldn't do me any good at all.

I have to thank God constantly for giving me such a wonderful family to help me through all everything. It does make me feel terrible to think sometimes that I'm dragging them through this everyday and hurting them with it, but He helps me to realize that that's part of what families are. I'm blessed for having such wonderful, caring parents and brothers.

I also am very blessed to have a fantastic team of doctors, nurses, and technicians at the dialysis clinic. They do their absolute best to make every patient feel the best they can and to give the best treatment possible. Sometimes talking to them totally changes my attitude around. I know it's not coincidence that I was put into this clinic instead of a different, possibly closer one. God knows what's best in every situation.

I've always believed in the power of prayer. Having so many people praying for me is so very encouraging. I've certainly prayed more in the past few months than I ever have and I don't intend to stop. Not only is it talking to God, thanking Him, and asking for healing and other things, it's also a very helpful stress relief. I'm constantly praying whenever, wherever now.

I have also started reading the Bible a bit at a time to try to read the entirety of it. Getting through the Old Testament can be a little tough, but if there's a book worth getting through, this is the one right?

I have to thank God for everything, honestly it could be a lot worse.

Usually with faith related things, church is one of the first things people think of. I've been going to church a bunch more in the past few months, although I still don't think we've found the right one to go to on a regular basis yet. Some are too big, some just don't feel right. I'm sure we'll find the right one soon enough.

I think this all has also changed my outlook on people and things in general quite a bit for the better. It's easier for me to give people chances and not immediately think badly of them for insignificant things. I'm never going to really be a people person (like my crazy brother who is wonderful with people!), but hey, I can always work on how to handle people a bit better.

Overall, I don't know how I would have made it this far through this without faith in my life. I know I just have to trust God and know that He has everything under control.

So I heard kidneys kinda do sorta important stuff maybe huh?

Everyone knows they have two kidneys (usually). You can survive perfectly well on one kidney. I was perfectly fine with one kidney for years. Most people don't truly know what kidneys do, although they know they are important. What's a kidney? What's it do?

Kidneys are bean shaped, fist sized organs located on either side of the spine in the middle of your back, just under the ribcage.

They clean and filter your blood to remove waste products. This includes ridding your body of toxins as well as creating urine.

Blood pressure is regulated through the kidneys. If your kidneys are damaged, your blood pressure can be messed up. On the other hand, if you have bad blood pressure, you can damage your kidneys.

Production of red blood cells is also stimulated by the kidneys. The primary reason I went into the hospital in August/September was because I was severely anemic. My hemoglobin was very low because my one kidney that I had wasn't functioning properly any longer. Bring on dialysis and fix it all.

Kidneys help regulate various substances in your blood. Minerals such as potassium, phosphorus, sodium, chloride, calcium, and many very important others are all controlled through the kidneys.

They keep the volume of water in your body constant also. Damaged kidneys may cause swelling caused by too much fluid, also known as edema.

These are the most important functions of the kidneys. They can also have part in a person feeling tired too often, having cramps, loss of appetite, having trouble concentrating, itching (I had this problem when I was younger, but it wasn't ever diagnosed as a kidney issue, but now that I look back on it, it's obvious that was the cause.)

Now that you know they're not simple organs that you should take lightly, make sure to take care of your own kidneys! There wasn't anything I could do about my situation since I was born with it, but most of the people that have kidney problems get them from other reasons. High blood pressure, bad diets, diabetes, and other things are all causes of kidney disease. It's easy to dismiss the things you see that say check for certain health issues, but this is definitely one that no one should pass up. All it takes to check is usually a simple blood test.