Transplant Nurse

Okay, so I talked to the transplant nurse. She told me that they don't do the screenings ahead of time, because they would just have to repeat everything when the time came (the five years cancer-free mark). Apparently, things change and the test results could be different later on. Anyway, she said the letter was just for now and in 2010 I can contact them again.

She also put a little different spin on the whole requirement to wait until 5 years after the cancer. I'd always thought the reason behind it was that I would be too high a risk to waste their time and a healthy kidney on. But what she said made me think of it differently. She said, that because of the immune suppressing drugs, if there were any cancer even on the cellular level, then it could grow and spread more rapidly than otherwise and they wouldn't be able to stop it. The fear is that the transplant could hasten a cancer death so they want to be really sure no malignancies are still lurking. The "too big a risk" was really for me, not them. I no longer feel like I'm not worthy of a transplant, due to the cancer.

Well, that's the news from Natchitoches.

I forgot!

I was reading over my posts and saw where I was looking at Hawaii vacations. Well, we decided instead to go to Greece. We've made a deposit on a trip for 11 days - 8 days on the mainland and a three day cruise to see some of the islands. We'll be going next May.

We're really excited. We've started reading up on ancient Greece to learn all we can before we go to get the most out of the trip. It's a lot of money in these uncertain times, but hey, you only live once.

Uh-0h

I received a letter today from the Willis Knighton transplant committee. It said they reviewed my case and they are sorry, but I'm not a transplant candidate. Just like that. No appointment or anything. It said they reviewed my records and decided I wasn't a good risk. The reason they gave was "chronic malignancies." The letter said I could apply to another transplant center. It also said I could call the transplant nurse if I had any questions.

I had just gotten home when I opened the letter so I tried calling, but she had left for the day. When I asked what her hours were they told me 8 to 4:30. It was 4:10. I said, "Eight to four thirty except for today?"

All I could do was leave a message. I guess I'll try back on Monday. I don't know whether the letter meant I was turned down for transplant surgery forever, or just until five years after the cancer. Or even if they think I still have the cancer. The letter made it sound as if they thought I had malignancies currently. I'm quite confused as I expected an appointment, not a decision.

I'm not going to worry about it right now, though. I can't do anything until I speak to the transplant nurse.

Well, I finally came back to make an entry. I've been very selfish with my time these last few months. When I have free time, I just want to read, or play with clay, or surf the web, or hang out with Luke, or just watch a little TV. I forget that I set this up and had a goal.


But I'm here now for a moment to make an update. At work they finally officially gave me the promotion, so I'm no longer "acting" Area Manager, but actual Area Manager. I hired my first employee - an Administrative Coordinator 4, which is basically a support person that acts as receptionist, and all around clerical person. We only have one so we needed someone good. I'm happy to say she seems to be working out well. She's smart and pleasant and enthusiastic, so she's already doing more than the previous girl who had been here three years and was totally familiar with the job.

The rest of the office is coming around and getting over the resentment they had about me being given this position. All except one, but she's a hateful person and nothing will win her over. She's the one who said I got cancer because I wasn't "right with God." You just can't win over someone like that. With her, I just had to lay down the law and make sure she understands she's not going to win in battle of wills with me as I have all the power now.

The other desenters have either quit or have realized they really didn't want the manager position after all. And they see the improvements that are happening in the office that have been long overdue. It's amazing how much cleaning up the office, and getting repairs done after years of neglect, can lift morale in an office. Also, I have one person working from home now which the previous manager would never have allowed. And I managed to keep us from losing a worker who was moving to Lafayette, by arranging for her to continue to work for us, but from the Lafayette office. This is big as we're short four workers and Jindal's idea of governing is to not allow us to replace workers we lose. Four workers is a lot in a small office. It's not easy to spread out that much work to the remaining eight workers.

I am getting a new worker after all, I found out yesterday, but I don't get a choice in the matter. I was informed by the powers that be, that a manager from another office has moved to Natchitoches and agreed to take a demotion to work in my office. So I'll be supervising a man who has been the manager in another office for years. You may be wondering why he would want this transfer - well he's the pastor of a church and has been "called" to this area. This doesn't bode well for me, I've got to tell you.

Okay, enough of that. I went to the nephrologist for a two month checkup. The good news is that the efforts I've been making to lower my phosphorus have been working and my numbers have gone down some. All I can really do is continue what I'm doing and hope it's enough to slow down the kidney failure long enough.

I was better prepared to ask questions at this appointment. I asked if I had to wait two years to have a transplant or if I had to wait two years to start the process. Since it takes so long to jump the hoops before you get to the actual surgery, I was wondering if I could get all the screenings and stuff out of the way, so when I get to the two year mark it could be set up to happen. The doctor said there was no reason to wait to start the process and in fact, that would be the best thing as it takes months to get an appointment with the transplant surgeons. They have to do evaluations of your fitness for a transplant and counseling and screenings for matches for anyone willing to donate a kidney to you. Everyone has to be evaluated for physical and mental fitness, etc. The whole thing actually takes years.

My point is that the nephrologist has submitted my name to the transplant specialists and told me to expect an appointment in a couple of months. He said I should hear from them by early Jan. Perhaps, I can get it set up and ready before August 2010, when I'll be permitted to go ahead with the transplant. Wouldn't that be cool? That is, of course, if we can find a match. Otherwise, I can't get on the list until 2010 and really organs go to those with greatest need, so it could be a long time.

They do the transplant surgeries in New Orleans, Shreveport and Dallas. I was quite surprised that they do them in Shreveport.

So, if you are one of those that has offered a kidney then you may be hearing from me in the next couple of months to find out if you were serious. I'll find out when I go for my first appointment what the whole procedure is.

And now I must go to work and put out fires.

Sunday

Things have been rather hectic around here and I've been working a lot of overtime. But I have managed to think a little about things and I've done some research into kidney transplants. It's a little less scary now. And while transplantation is a long way off (at least 2 years) before I'll be actually seriously dealing with it, I was compelled to read about it. Here are couple of links, if you're interested, that aren't technical or too in-depth. One is about transplantation and the other is about effects on donors.

The dance class is going well. Lots of fun. And who knew I could actually learn this stuff? Not me.

Now I'm off to peruse Hawaii vacations on the net. I'm saving my pennies and trying to decide on a really cool vacation Luke and I can take next year for about two weeks. We haven't had a real vacation in a while so we want to make it a big one.

It's a new day (it's me!)

I've decided to start a new blog, because I have some new issues. Since there are no longer "cancer events" I didn't want to continue in the old blog. I don't know if I'll keep this one up or if I'll ever have anything interesting to say here. Or even when or if I'll post after today. But I do have a lot to say today. And again, I thought this would be a good way to inform family and friends.

I'm sitting watching the wind from Ike whip through the trees. Occasionally a spurt of rain with slash against the window as if there were a sprinkler rotating back and forth across the lawn. I wonder if this one will be like Gustav. That one made the sky glow a weird gray orange and though it was pouring rain and wind there was no thunder or lightening. When the violence stopped there was this misting for about 24 hours.

Anyway, back to it. To start with, it's been three years since the surgery (August 2005) and nearly three since the end of chemo (November 2005). Radiation went on into March of 2006, but the cancer free clock starts, depending on who you talk to, with the surgery date or the end of chemo. Three years is the magic number or the goal in my type of aggressive cancer. For most breast cancers the goal is 5 years. What that means is at this point the chance of the cancer returning is greatly reduced from what it was during those first three years.

Of course, cancer is evil, so you don't just develop cancer, go through treatment, and then go on your merry way, back to normal life. Cancer treatment leaves scars. (At this point you are saying to yourself, I thought this wasn't going to be about cancer. Please bear with me. This is the introduction leading up to what I have to say today and the reason I started a new blog.)

One of these scars is the daily nuisance of the "the big hand" from the lymph edema, which is much better these days, but still interferes with fine motor skills in my right hand (the important one). For example, I prefer fat pens (like a preschooler with fat pencils and crayons) because they are easier for me and my big hand to grip. You can imagine what an aggravation this is considering most of my hobbies involve fine motor skills.

I won't outline all the left over effects of cancer treatment, but I'd like to mention that my heart was also damaged by the chemo. When I saw the cardiologist the first time he did an echo cardiogram and discovered my heart had weakened (I knew this already, because I could feel it. I had to insist on the echo, because he wanted to stop at the stress test, which appeared to be fine). The left ventricular ejection fraction was 45 percent(normal is 55 to 75).

Fast forward six months - I had started exercising 4 to 5 days a week and lost 12 lbs. Yes, only twelve, explicative. I was riding my bike or on the stationary bike mostly. When I went back to the cardiologist and had another echo my EF was 50 to 60 percent, "a significant improvement" and I no longer have to go back to the cardiologist unless something happens. That's the good news.

So that brings us to today. I'm going along, exercising, feeling strong and healthy, mostly. The only issue has been my creatinine levels. The chemo did "speed up" my kidney disease and my creatinine has been rising since the third or so chemo. It's now at about 2.7. My nephrologist had told me some time ago that when it reaches 10 that's when dialysis enters the picture. Well, I found out that's not the clear cut situation.

First let me back up. I've been a bit tired the last few weeks. I didn't think much of it because in the last few weeks I haven't been exercising due to one thing or another (hurricanes, company, other various situations). I'm always more tired when I'm not regularly exercising. Also, I've been promoted to Medicaid Area Manager and I went from being a worker bee to supervising 12 people. I had no training and have no supervisory experience. Also, the office wasn't well managed before I took over (read - almost a disaster). Oh, and half of the people don't particularly like me and never have. And 4 people have more seniority, two of them by about 15 years, and weren't even considered for the position. I took over a crew with at least three major factions. All, but one, of my workers are women. Need I say more? What all that amounts to is that I've had more than normal stress lately. I wasn't surprised that I've been tired lately.

Okay, now to the point of starting this entire blog in the first place. Went to the nephrologist for a regular checkup. I usually go every six months, but somehow it turned into eight between this one and the last. Here's what she said. My phosphorus is way up and combined with the creatinine, click click click on the calculator and ... "your kidneys are only functioning at 23%." This wouldn't be too terrible, I mean they work, except that last year they were at 26%. They have declined considerably more than expected in one year. When function gets to 20% they normally start the process of arranging a kidney transplant. Unfortunately, I won't be able to have a transplant until I'm 5 years cancer free. Regardless of the type of cancer I had. If function gets close to 15% I'll have to go on dialysis. She's afraid this may happen before I can get a transplant. Once on dialysis life sucks and death comes within a few years.

What can I do, you ask? Good question. Sad answer, not much. One thing is I have to reduce my phosphorus intake as much as possible and take an expensive pill twice a day. How do I reduce phosphorus? All food contains phosphorus, but some have a lot more than others. I have to avoid all dairy products, beans (kidney beans, red beans, baked beans, etc - I can eat green beans), organ meats and processed meat products (hotdogs and sausage) nuts and seeds (peanut butter!!), whole grains, biscuits, pancakes, colas, pizza, chocolate. Basically, most everything. She gave me a list and I swear, except for the cream soup I had eaten every one of the foods on the list that week. Some of them several times.

Basically, the diet I have to follow is almost counter intuitive. For example, because I've been trying to eat better I've been eating smaller meals and have mid morning snacks of fruit and a piece of cheese or a spoonful of peanut butter, or yogurt. I've been making smoothies, also with yogurt or milk. Or I'll have some nuts, like cashews. And I've been buying whole wheat bread instead of white. All this has been poisoning me by provided too much phosphorus for my kidneys to process. I think the best thing is for me to eat broccoli and call it a day.

There you have it folks. I'm going to need a kidney transplant in a few years if I can make it that long or I'll be on dialysis in a few years. I don't know how the kidney transplant thing works yet, but the last nephrologist told me the kidney doesn't have to "match" so much anymore like they used to. In other words, it doesn't have to be a close family member or that rare matching stranger. The important thing is blood type. I have some research to do. The thought of dialysis terrifies me. I remember all too well the pain my mother and sister went through. I don't want to go there.

I'm saving all my spare change to take a really cool vacation next year. Just in case I have to go on dialysis. I'm hoping for time so that I can have a transplant instead. As scary as that is, I'd much prefer it to dialysis. I've met a few people who have had kidney transplants and they all say how strong and healthy they feel, like they haven't felt in many years. I want that.

That's that. Health update 2008. How did I manage to get such a lemon for a body? I remember how strong I was as a kid. I used to run everywhere. I had to be doing something physical all the time. I've tried to get that back with the healthy eating, bike riding and other exercise. Now I know why it's not been working as well as I'd like.

On a happy note ... What, there's a happy note? Kinda. For fun I'm taking a West Coast Swing dance class. You know, like the jitterbug. Pretty funny, huh? I know, rhythm less me! But I've always secretly wished I could jitterbug. It's a lot of fun. Only bad thing is that Luke had other obligations and can't take it with me. I have a girl friend who wanted to take it too. There are three of us without male partners, but it doesn't matter because we rotate around and everyone dances with everyone.