We didn’t get a call today from the transplant team. So, we’re still waiting. My dad & sister’s contact was on vacation this week. So, we’re hoping the team still reviewed their case and she’ll call on Monday. But, now we’re wondering if we’re another week off. They were supposed to review the case last Friday but the nursing home is pretty disorganized and couldn’t find his TB test results to fax to the team. So, he had to have the test redone which put us out a week. The team got the results this past Monday so hopefully they looked at them and made their decision today and we’ll get our answer Monday.

Otherwise it’ll be another week.

Till later…

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Today’s kind of a weird day for me. Today the transplant teams meets to determine a date for the surgery. I’m sort of anxious, not a bad anxious a good/excited anxious. But, I keep remembering the last transplant. This one is different and hopefully the after will be very different. But, I just need to dump some stuff from my brain…get it out, so here goes.

My dad was diabetic since just before I was born. About 13 (ETA oops, it was 14) years ago he started going through kidney failure which is a common problem for diabetics. The doctors offered the option of a kidney and pancreas transplant which would, if successful, mean he didn’t have to take insulin shots any more. At the time none of us “kids” were eligible to donate an organ to him because of our age and the thought of not having to watch his blood sugar was a huge draw. So, my dad chose that option and went on the list to receive a kidney and pancreas. The one downside — it had to come from a cadaver donor.

The list for kidneys is really long, the list for kidneys and pancreas’ is a little shorter so we began our wait. Unfortunately (or fortunately for my dad it ends up) my dad ended up in the ER at one point with extremely high blood sugar levels. When I say extremely high, by all medical “rules” he should have been dead, but he was awake and talking. I believe, but could be wrong, that this ended up moving his case up in priority level for him.

We were tied to only going a short distance from home in case we got “the call”. My dad had to wear a pager at all times and be reachable. This was back when pagers were somewhat popular (LOL) and I remember times sitting in church when someone else’s pager would go off and everyone in the whole congregation would turn to my dad holding their breath. It was a very trying time…lots of patience needed.

Luckily, the kidney failure never got so bad that he had to go on dialysis. (Knowing what I know now I’m even more grateful for that.) So, in April of 1995 (I think it was 1995 - was corrected, it was 1994)) we decided to go camping. My dad and I went up early on Friday. I towed our trailer up and we got the campsite set up. After we were all set-up we decided we better test the pager function so we went to a payphone and called it….it worked so we were OK.

My mom came up and some friends of ours showed up. My brother was there but I can’t remember if both my sisters were or just one. We had a great weekend camping then on Saturday afternoon the pager went off. I remember this very vividly. We were sitting at the table in our friend’s trailer and it started and my dad threw it on the table like it was going to bite him. It was exciting and scary at the same time. They called to hospital and were told they were testing things but wanted to make sure he was local and feeling good enough to undergo surgery if these organs were good. A few hours later we got the second call and left for home. Literally, we just left…our trailer and everything was left there and some friends packed it up and brought it home for us.

We went home got some stuff and headed to the hospital for the longest night ever. He went in to surgery Sunday morning. The surgery was long but went well. They wheeled him in to ICU after surgery and we got to see him. He looked good but there were tubes and machines everywhere. I wasn’t really expecting that. But, everything went well.

I spent every day he was in ICU at the hospital. I’d go up in the morning and stay as long as I could. My grandpa (my mom’s dad) came up and he went with me most days. I remember one day, I think the scariest day of my life, my grandpa and I went up to see him and when we got there they said I couldn’t go back. The doctor came out to talk to me and said my dad had slipped in to a coma and they didn’t know why. They were taking him for some tests. Shortly after that they wheeled him out right by me. Talk about SCARY. It was HORRIBLE. On top of that I was at the hospital by myself, well, Grandpa was there but he hated hospitals and started freaking out on me and left to go smoke outside. I had to figure out how to tell my mom so I called our pastor who went to the house to talk to her and get her up to the hospital.

My dad spent most of the six months after surgery going back and forth into and out of the hospital. It was an extremely trying time for all of us. I knew the hospital very well. I knew which days the cafeteria had the really good food (and I will say that Stanford Hospital cafeteria has great food!). I knew which specials I liked best. It was just part of life being at the hospital. We knew all the nurses by name. Could find many supplies on our own. It was an experience.

The last 12 years have been great. My dad’s been doing well until last year when he had that horrible reaction to some medication. That’s what triggered the second kidney failure and got us on this new path. This is his first time on dialysis and, quite frankly, it sucks. So, this experience has been different. This time he’s getting the organ from my sister so it will be planned. That will be nice because we’ll know when it’s happening and it won’t be sprung on us. This time, I pray, the experience will be much nicer because he isn’t going to have the problems afterwards that he had last time.

Many people ask me why I spend so much time at the hospital. You know what, I LIKE BEING THERE. My dad is comfortable with me there — meaning he sleeps and generally is more relaxed if I’m there. I am more in control of myself if I’m there. I actually LIKE being at the hospital. If I had my life to do over again, I’d go into social work and work in a hospital with patients. (Don’t get me wrong — I love my job and at this point in time would NEVER change what I do.) I don’t like my dad being in the hospital but when he’s there that’s where I want to be. I like knowing what’s going on and I like hearing it first hand rather than getting someone else’s interpretation (and we won’t go there on my opinion on that).

So, today, hopefully, we’ll get the call telling us when this surgery is scheduled for. Then I’ll figure out when I leave for CA. There I’ll so what I really enjoy doing…take care of my dad when he’s sick and help my sister while she recovers. For various reasons I was not an option for getting tested to donate my kidney to my dad. But you know what, I’m OK with that and, I think, so is he. This give me the chance to do what I do best…support the patient in the hospital.

Yeah, I know this was long — if you read it all…wow, I’m amazed. But, it was a post I needed to make for me. So…

till later…

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I just need to complain, OK. One of the joys of living alone — there’s no one there to vent to. So, I guess you’ll have to listen. PLEASE. I just need someone to listen.

So, first, I need to find a chiropractor here in town. My back has been spasming for over a week now. This sucks. It’s going to be a while until I’m back in CA and can get adjusted. Ice only helps so much.

Second, I have decided, and you can hold me to this, I will NOT ever buy a condo. EVER. If/when I move from this apartment I want space. I do NOT want to be able to hear my neighbors annoying dog bark. I do NOT want to hear my neighbor’s music. I do NOT want to have to think about whether it’s too late to run my dishwasher or washing machine. I do NOT want to think that my neighbor are listening to me take a shower. And, I want to be able to hose off my front porch not have to sweep it.

Yes, I said I’m living here until I die or can hire someone to move me. I’m leaning towards hiring someone to move me. I’m also leaning towards acreage somewhere where my neighbors can’t bug me. Am I really that anti-social? No. I just want to be able to work without having to listen to a dog that’s not mine bark. I want to be able to watch a movie and listen to it not the movie my neighbor is listening to. I want to be able to sit on my porch or have my windows open and not have to smell someone else’s cigarette smoke. I want to be able to run to the mailbox in my pajamas. I want to be able to go to the grocery store and not worry about how much I’m buying and whether I’ll be able to carry it all up the freaking stairs in one trip.

I love where I live, don’t get me wrong. But, dang it, I’m not an apartment person. All I can say is at least I figured this out BEFORE buying something!

Till later…

(I really do feel better now :)!)

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When I moved I got a new phone number, pretty normal, right? The first week I had the phone I got a ton of calls. Unfortunately, none of them were for me. Most annoying, they were all collection calls and the people on the other end very rudely did not believe me when I told them they had the wrong number.

For the past seven weeks the calls for this other person have continued. Mostly from one creditor and luckily I think I’ve finally convinced them that this person doesn’t live here. But, this week the calls have gotten weird. Now I’m getting calls from stores that her “order’s in” and calls from some college. But, last night took the cake.

At 2:30AM, yes AM, my phone rang. I answered it and a voice sounding very much like my brothers starts saying “mom”, “mom”. I asked who it was and he replied “Brian” (uh, my brother’s name) like I was the idiot for not knowing who he was. At this point I’m planning the harm I’m going to do to my brother because if he’s calling me at 2:30 in the morning some bad has happened and I’m furious that he would call me to deliver bad news. Dude, if something bad has happened to Mom or Dad get your butt in your car and drive over here to tell me in person. Don’t CALL me and give me the news over the phone where I’ll be left to deal with it alone.

So, as all this is going through my head “Brian” responds with “Is this Janelle Bakers house?” I inform him no and he apologizes and lets me know he’s probably forgot to dial the correct area code. At which point I kindly informed him that his mom had changed her phone number and I’d been getting lots of calls for her.

Afterwards, as I was laying in bed thinking about the whole phone call and pondering the fact that it came in at 2:30 in the morning I realized this kid was probably either in jail or drunk at a bar calling his mom for help. (Of course, I didn’t think about the fact that he obviously hasn’t talked to his mom for a while since he didn’t know she hasn’t had this number for a while.) As I’m laying on bed, I can’t fall back to sleep at this point, I got curious so I got up to check where the call came from — a personal cell phone — at least I know he wasn’t in jail. Hopefully he had another way to get in touch with his mom, and hopefully, if he needed a ride home from some bar he found one.

I wish I would have asked him to ask his mom to pay her bills and to give her creditors her new phone number so they’d leave me alone.

Hope I don’t get any more wake-up calls.

Till later…

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My niece (and her brother and parents) has been on vacation for almost two weeks. They got home last night and we went downtown this evening. Lots of fun tonight seeing the Art on the Green vendors. But, the fun stuff starts now. LOL

The first thing Ally wanted when they got home last night was a “slumber party at Aunties” house. It’s our fourth LOL and I love every single one. Ally brought her special present from Grandpa over tonight — a special chair for Auntie’s house. When she told me about it she said it was blue like her pants — and it is blue denim. It’s a special chair for her to sit on so she doesn’t spill any more milk on my new couch. LOL She loves the chair and I’m happy that I don’t have to clean up spilled milk on my cool new sofa — everyone’s happy.

Today Ally got her special present from Auntie. I bought her a “very special big girl book”. Her absolute favorite movie is Charlie and the Chocolate Factory (preferably the old one not the new Willy Wonka’s Chocolate Factory with the “scary Wonka”). So, I bought her her very first big girl chapter book. I know, she’s 3, but she really loves the movie. I didn’t know if she’d sit still for the book (there’re no pictures!) but I got it free from my paperbackswap so I figured we’d try it. We read three chapters tonight and the only reason it was only three is because it was way after 9 and she needed to get to sleep. She LOVES the book. Only sad thing for me is that after tonight her mommy and daddy will be reading it to her. Which is good.

Tomorrow I’m not 100% sure what we’re going to do. Probably go swimming at the river. I brought her life vest over and we’re going to the swimming area I like. It should be fun. It’s definitely still hot enough.

Well, I need to get to bed — she’s sleeping in the hallway (yes, I have an extra room that she’s declare “her room” but the hallway is cooler and stays dark later than “her room”. Unfortunately, that means I have to get to bed early so the light out here isn’t on keeping her up (although I think that’s not a problem because I’m fairly certain she’s already asleep).

Till later…

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My sister (the one who’s giving her kidney to my dad) sent out an e-mail today about the updates. I wanted to share a part of that with you:

For anyone who is interested, after we have a definite date, they have asked for blood donations in our name. There is a 1% chance I will need blood but a 25% chance my dad will. So, if you are willing to donate blood in either of our names, please let me know so I can get more information to you.

PS. Every one keeps asking if I’m scared… the answer: There is not an ounce of me that is scared. If I could, I’d leave right now and have the surgery. Nothing will make me happier right now than to see my dad not suffer anymore from the dialysis and it’s awesome to me that that day is coming sooner and sooner I’ve prayed about this whole process and know that everything is happening the way God has meant it to be and I’m grateful for the confidence He’s given me in that plan.

Now from me to you: if you are interested in donating blood in my sister or dad’s name let me know. You don’t have to be local to them to donate, from what I understand. If you donate to your local blood bank I believe his blood bank is notified that someone donated in his name. Let me know if you’re interested and I’ll get more information for you. If it’s the same as last time they get some sort of “credit” for having blood donated in their name. So no matter your blood type or location you can still give.

Till later…

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