arm surgery

Okay, so I asked the man, how much cutting is involved? And when will I be able to return to work? And how will this limit my use of that arm and for how long?

He responded with a shrug and said, "Well, it's outpatient surgery, you should be able to go back to work at what you do, immediately." But, hey, we'll schedule it for Friday, that way you'll have the whole weekend to recoup. The "you idiot!" was implied. Of course, he says, there's always the chance he won't be able to do the fistula, in which case, he'll put in a graft. You know, instead of connecting the vein to the artery, he'll have to insert an artifial vein. But not to worry.

I asked him about sleeping, because I had read that it might be a problem if I was side sleeper. He waved his hand at that and said, "Oh, don't worry about that. It's not even an issue."

This was the extent of my preparation for this life-changing surgery. And that is why I hate surgeons. No matter how you ask, they will not tell you what you need to know. And you will be surprised at what they have done to you, when you wake up. (Having said this, I warn anyone who writes to me and says anything about having to be your own advocate - you give me this advice at your own risk. I did research on the internet and I did ask the questions.)

He did not tell me that I would lose all the strength in my arm (I hope that's temporary). Or that it would be four incisions, three of which have 9 or 10 staples. Or that my skin would be pulled so tight, my arm kind of sticks out away from my body at a strange angle. It almost feels like he detached my arm and sewed on someone else's.(Someone asked me if I had hurt my back, because of the way I was walking.) I usually carry a pillow under my arm in order to prop my arm at the right angle so it isn't pulling the skin too hard.I cannot sit or stand comfortably.

As for sleeping, which I asked him about specifically - I have been unable to sleep in a bed. I have to sleep propped up in a recliner. I don't know when I'll be able to lie down again.

After the surgery, as you'd expect, my arm was swollen huge and all black and blue, but it's been a week so most of the discoloration is gone. I still have swelling and constant pain in my arm, though. I cannot lift my arm easily.

My poor skin reacted to the bandaids and so I can't cover the incisions. When I took one of the bandaids off, it pulled some skin with it, leaving an open sore in the elbow bend.

While my arm feels hot to the touch, my fingers are cold. This is a circulation problem, and cold fingers in this hand may be something I'll have to live with forever.

It feels like I have giant tubes under my skin and it itches just below the surface of the skin (you read right) where the graft is.

I'm posting a couple of picture so you can see my Frankenstein arm. Yes, I know it's red around the staples of two of these incisions and that may be sign of infection. But the redness started yesterday, and being a holiday, I was advised by the doc's answering machine to wait until Monday or call 911. I am taking levaquin, which I just happened to have on hand, and I will call on Monday.

Thanks for letting me vent. Now it's time for more pain meds. I hate to take too many of these, so I go as long as I can without taking them, and then I cave, pop the pills, and turn on the TV.

Time marches on

I guess it's high time for an update. I've been back to the nephrologist a couple of times since my last entry. I go every two to three months. I'm driving to Shreveport for each appointment now, because they rotate the doctors that come to Natchitoches. I want to see the same doctor each time now. She's been my nephrologist for ten or twelve years. I like her, because she's very straight forward and confident. Unlike some doctors, she talks to me like an equal - like I'm perfectly capable of understanding what she's telling me. She's never been patronizing like so many other doctors I've been to over the yeas. And I really don't have as much confidence in some of the other doctors in the group. I'm sure they're capable, but they don't know me from any other patient.

My phosphorus is okay, so either the pills or the diet is working okay. But my creatinine was 2.8 this last time. My function is steadily getting worse. The next step is to go have my veins mapped and then have surgery to put in a fistula. This is where they attach an artery to a vein to increase the blood flow to the vein. This causes the vein to grow and get stronger and better able to withstand the needle sticks and for use during the dialysis. Sounds awful, right? They do this before you need dialysis so that it has 8 to 12 weeks to heal before you need it. Otherwise you need a catheter inserted to use while the fistula heals.

Dr. N wanted me to have the vein mapping as soon as I get back from our trip, - the same week. But they wouldn't schedule it that far in advance. Her nurse then scheduled it for April 27th and left me a message letting me know the day. I've tried to reach her about that as I don't know if it makes a difference how much time passes between the mapping and the surgery. The nurse may not have been aware that I was leaving for two and a half weeks in May, when she made the appointment. There's no way I'm having the surgery before my trip. But we played phone tag for two days and then they were off for Good Friday. I'll try again on Monday. I read that once they do the mapping they don't want you to have any needle sticks, like blood drawn, until after the procedure is done. Considering I have blood drawn every two months or so, I'd think they'd want to schedule the mapping and the procedure pretty close together.

Our trip to Greece is only 4 weeks away! It has changed a bit from the original plan. Our original trip was canceled as it didn't fill up, but another company had a similar trip starting a day later. It was a day longer on land and an additional day on the cruise, but they were offering a special rate on the airfare, saving $800. This means we ended up with two extra days for almost $300 less then we originally planned. Of course, we'll need spending money for the extra days, so we really aren't saving money, but how could we pass it up? Our other option would have been to reschedule the original trip to three weeks later. I'm glad we decided not to do that, as time is getting to be a real issue with my health and three weeks could make a difference in when they do the fistula surgery and healing times, etc.

Now it's time for me to go walk. We're trying to walk and/or exercise every day before the trip so we can keep up. I've not been doing this as faithfully as I should have been, so we really need to be sure to get it in every day. I'm worried, because it does seem to take something out of me and I'm sure we'll be doing a lot more on the trip. Especially, up and down stairs and uneven terrain.

In any case, it's going to be great and I can't wait. I just hope I'm prepared. I'm trying to figure out what I'll need to have with me and how to pack when you can't take too much, but you can't wash clothes (except by hand) either.

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.