My Pre-Transplant work up.

[pagandialysis]

I would like to share with you the Facebook status updates I made through out the day today while at my pre-transplant workup that took all day.


1: "I'm up at 6 am to get ready to go to the hospital by 7 am for a day, yes an ENTIRE day, of transplant blood workup.......yay me."

2: "So far I've been through transplant education, an ultrasound, 18 tubes of blood work, financial consulting, a medical background check, and a brief psychological evaluation.

I was just told that I'm not even a 1/4th of the way finished.

Yay..... -_- "

3: "The surgeon comes in with a very beautiful punk girl who is shadowing him. He lays me down and checks my body...he then pulls my boxers down and checks my pelvises...thanks for waving my penis around doc........"

4: "Individually all of the doctors and staff say that I am a good match to be put on the transplant list. Now I just have to wait for the weekly meeting where they all get together and talk about me and then hopefully approve me for the list.

There are two huge problems that won't stop me from getting on the list but will prevent me from actually being offered a kidney.

I: I live alone.
II: If my sister is the donor then who would transport me from the hospital and then to all of the subsequent check ups?

The first is a problem because for the first month I can't really do much for myself at all. I would need someone to stay with me and help take care of me. That couldn't be my sister if she was the donor and my mother is just to weak.

The second one is also a huge issue because for the first month after transplant I have to be seen at the hospital twice a week. My sister's husband would have to watch my sister and the kids while she recovered so he would have to watch her and the kids so that's out.

So right now my biggest problem is my lack of a large support network. At least if they approve me I can start accumulating time on the off chance that my sister isn't a match.

So I'm happy but worried at the same time."

5: "I called the ride service at 3:30 pm for my pickup from the hospital. I called back at 4:30 pm and the lady had no clue what I was talking about, they didn't know that I had called earlier so they didn't have someone on the way. I got picked up at 5:30 pm.

Then thanks to the snow storm outside a twenty-five minute drive took an hour."


So yeah, today has been a long day.

[Joe]

Pagan, I had someone drive me to my first two appointments. After that, I drove myself and I'm an hour and 20 minutes from the hospital. As for appointment frequency, I was originally told that I would be on 3 a week appointments for 4 weeks, then to 2 a week for 4 weeks and then to once a week. The reality was I did an appointment the day after discharge, 2 the next 2 weeks and am now on one a week. In speaking with the Dr today, he said if it wasn't Christmas in two weeks, he would put me on every other week now, but he wants to see me next Thursday and then, if all is ok, he will release me until after the first of the year. A lot of it depends on how you do after your transplant and how you feel. You kind of have to play it by ear.

[jeannea]

Joe, that's really unusual to drive yourself. Because they cut those abdominal muscles, it's harder to control some leg muscles. So the doctor says you cannot drive for 4 weeks. That's what I was told. Then if you drive during that time, you are NOT covered by your auto insurance.

Pagan, sounds like you did ok. It's an awfully long day. Even being used to blood draws, that 18-20 tubes thing made me almost toss my cookies. Except that I was fasting. I agree with you that you should get on the list and accumulate time. You can work on the support system. This is the time to start asking for favors. Don't think "I don't want to bother anyone." If you have a friend who can help, ask him. Do you belong to any groups like clubs or a church type org? Ask them.

Good luck!

[MooseMom]

I'm not sure why you believe that for the first month, you won't be able to do much for yourself.  That certainly wasn't the case for me, but then again, my surgery was without complications.  I was released from the hospital after only 3 nights, and once I got home, I was able to just get on with things.

I had only my husband as my "support system".

You mentioned a "ride service"; could you not use them to transport you to/from the tx center post surgery?

I agree with jeannea.  Ask for favors and offer something in return.  This is your survival you're talking about!

[Deanne]

Are you on speaking terms with any of your neighbors? Are any of your neighbors retired or on disability so they'd have the available time? I talked to a couple of mine about the potential for having them take me to appointments if necessary. I'd pay them for their trouble and I think this made them agreeable. Of course, the time hasn't come yet, so I don't know if it would really be a solution in the end. Otherwise, are taxis or public transportation an option?

[pagandialysis]

Well I just moved to NY in March and I just moved in on my own in September. I don't trust any of the neighbors that I do know and I don't have any friends yet. I do belong to the local UU Church but since I moved 40 minutes away I just can't get there anymore.

Also they won't allow me to leave the hospital without someone.

My sister and I have a plan so it all depends on what the doctors say after my next visit.

[paris]

First -- get on the list. Then there will be time to figure logistics. You will do much by yourself after surgery. You will be amazed how good you feel.  My husband would go to work for 10 hours and I was able to get my food,  walk the hallway and I also slept a lot.   Can you stay with you sister for a week or so post transplant? You could take care of each other!   But 1st, just get listed and start accumulating time!  Good luck.

[jeannea]

That sounds good paris, but many centers will not allow you to be on the list until you have worked out some of these details.

[Simon Dog]

Joe, that's really unusual to drive yourself. Because they cut those abdominal muscles, it's harder to control some leg muscles. So the doctor says you cannot drive for 4 weeks. That's what I was told. Then if you drive during that time, you are NOT covered by your auto insurance.

Can you cite a law or insurance regulation that allows this?  It's very hard to deny others the protection of your auto insurance - for example, you insurance is still valid even if you are in a wreck and convicted in DUI.

[jeannea]

I'm getting so tired of being asked to prove everything I say, even if I say I thought I heard. I'm not going to spend my time doing this. You should probably call your insurance company and ask since they have your policy.

Think about why they tell you not to drive. When they cut your abdomen muscles, it makes it harder to control your legs until healing takes place. This can lead to slower reaction times. So why would you want to drive? Do you want to be responsible for hurting people because you were selfish? You couldn't give up driving for a lousy 4 weeks? Your drunk driving analogy is actually perfect. Maybe your insurance will cover you (before they drop you forever) but you could be subject to civil and criminal penalties. Who wants that? Oh, but I drove when the doctor said not to and I was fine you might say. Same excuse as the drunk driver until someone gets hurt.

Doctors don't make up this crap to annoy you. They want you to be safe and healthy. But as usual there are lots of people who say the rules don't apply to them.

[Joe]

And Jeanna, I did ask my transplant Dr about driving. He told me that they were concerned about putting stress on the surgical site by possibly having to react to situations that occur when driving. He did give me permission to drive, just said be careful.

[Deanne]

That's good to know, Joe! I'm really hoping I can start driving myself within a week or two of surgery.

I had to give the hospital a care plan and I listed several people who can provide for transportation, but reality is that it would be very inconvenient for each of them. One friend said she's planning to have me move in with her for a month. Not gonna happen! She's a wonderful friend and I'm grateful and touched, but being mother-henned would just make me want to kill her in her sleep. She's also 80 years old, has Parkinson's, and travels frequently, so I don't even know for sure she'd be in town. If she is, one aspect of Parkinson's is a tendency toward anxiety and I've all noticed that she worries about even the smallest things now. My other friends work full-time. My family is in Minnesota. My parents said they're going to come out, but my mom has vision problems and doesn't drive anymore. My dad is 82 and still drives, but I think I'd feel safer driving myself than riding with an elderly mostly deaf driver who doesn't know his way around.

[pagandialysis]

For anyone who didn't see the other post I am now on the transplant list!

[Joe]

Congratulations!

[Simon Dog]

I'm getting so tired of being asked to prove everything I say, even if I say I thought I heard. I'm not going to spend my time doing this.

Part of dealing in facts is is a willingness to back up what you say, rather than respond with "I said it, I am not going to waste my time proving it".

But, everything you said about the practical and medical advisability of a non-driving period post-surgery is absolutely true.

[jeannea]

I cannot prove what I was told on the phone. There is no way to prove it. Don't worry. I will not contribute to threads since I cannot prove that I am telling the truth about my experience.

[Simon Dog]

I cannot prove what I was told on the phone. There is no way to prove it. Don't worry. I will not contribute to threads since I cannot prove that I am telling the truth about my experience.

I absolutely believe someone told you that.  There is a way to prove it by examining statutes, policies and case law, however, I lack the time and expertise to do so.   Insurance is a tricky issue - auto insurance serves not only to protect the car owner/driver, but the public at large - and I seriously doubt that public policy would prevent someone from receiving compensation because the driver who hit them had had surgery and drove AMA.