Being listed

[merryfl]

When I was finally notified that I'd been approved to be listed, I expected to be thrilled, excited and totally beside myself. Instead, my first reaction was total and complete terror. What have I done? My life is no longer my own and everything I do has to be reported to "big brother." I can't even go out of town without reporting to the powers that be.

I have nine million tasks at hand that must be done right now. And I am second guessing my decision on a daily basis. I have to wonder if I am doing this for my own sake or to please every one else. Was I talked into this? Or was it really my choice?

I suppose these are normal thoughts when facing any huge change, and I'm sure I'll work my way through them. But, I wanted to be honest and let you all know it's not all "peaches and cream" after acceptance. Prayers for my peace of mind are certainly welcome!!

My daughter tells me to relax. Anything that needs to be done will be handled one way or another when the time comes. And if it is not, the world will not come to an end. It will be handled after I get home. If the bills are late, so what? As long as we have someone to watch the dog, the rest of it will be resolved. Easy for her to say.

[Toby]

Merry that has got to be a very scary feeling. I believe you will sail through everything just fine. You could be on the transplant list a long time. I will and I'm sure everyone on this forum will be praying for you!!! Please let someone in your family notify us here if you get called. I know that if Colleen gets called, Toni is suppose to be notified, but I haven't heard you say if you have someone or not.

I'll be praying for you!

[kenaz]

Merry I understand what you are feeling. I think it is quite common when we are facing such a life changing situation. I don't know how much input was given by others but I am sure they were trying to help. In my case, the first thing I said when TX was mentioned is, I will not have a TX period. My wife and family did not question my decision and did not try to change my mind. It is not that I don't believe in TX, I am a registered donor. For me, I don't want it. I hoe you just sit back and rest in the knowledge that we have the most advanced techniques in the world of medicine. TX is a common thing today and there are many alive because of it. Joy and I will pray for your peace with the decision you have made.

[Colleen-NC]

OK, first Merry, WOOOO HOOO !!!!!!!!! How exciting!!

Second, if the call comes and your not ready you can say NO! Its not unusual what your going through. I do that still to this day. Most of the time I am more than ready, so sick of being sob and not being able to do things I used to be able to zip right through. Some day my house will be spotless again but that's not whats important today. Today what is important is that I keep myself as healthy as I can so I can be here for my kids. The house is not as clean as I like but I had to give it up!! Can't afford weekly cleaning anymore so it is what it is!

Try to get your monthly bills as organized as possible, I made a list of whats due when and I have a little book with my passwords for my sister so she can go to my accounts and pay them. That way all Dan has to do is give her money for my account. He is not good on the computer and most of my stuff I pay on line and my sister is good with that. Most places have auto pay if you choose that so all you have to do is make sure funds are there. Gave me peace of mind. anyway. Dan will be with me most of the time anyway.

I try to keep things stocked up at the house also. Freezer is full and I stock up on toiletries and paper goods and laundry stuff so there is a months reserves at all times. This way the kids will be covered and my sister will not have to worry about the essentials at first. I realize you don't have kids at home so this will not be an issue for you.

I have a little bag packed with clean undies and a couple pair of button down PJ's and my toiletry bag is ready. This is all I am bringing to the hospital, if I need anything else, people will be down almost daily so it will be taken care of if I need any extras.

Most of all, just try to calm down a little and try not to jump every time the phone rings. Its easier said than done, the first few days I about went into heart failure when the phone rang, the first morning I was in the shower, talk about panic and sob LOL!!! I did calm down and its a darn good thing, its been 26 months!! I would be in the looney bin if I didn't LOL!!!

Great news!! If there's anything else I can help with, let me know.

Now, go take a klonapin and relax!!

[Colleen-NC]

Had to come back and add that doing all this stuff give me a sense of control. If I try to stay organized it will be easier and less to worry about when the time comes.

[blondie]

Merry, when the time arrives, grab ahold of it. Your life will improve so much. I knew a lady in my rehab class that got a 40 year old's lung and her life improved to where she didn't need oxygen anymore and she could walk and talk without sob and she was becoming more independent. You're going to love the end result and it doesn't take that long to recuperate. You're ready for this my dear. Pat

[maryaz]

Merry, That is good news. Relax and just get your priorities in order, calmly. Look to God and you will be fine. I say that based a lot on what Colleen shared with you. So nice to have someone to talk to that has been where you are.

You are brave ladies and this will sure be so worthwhile for you. I will be praying for you.

[roadtrip]

When my girlfriend was approved for her heart transplant she started meditating. I think it really helped her to find her center. The transplant journey is a long, long, long journey and nothing has to be decided overnight.

simeply getting your arms around the fact that you have been accepted is huge. I am very happy for you. take care of yourself. You will need to conserve your energy.

[sue]

Merry, I'm sending you hugs, good thoughts, and prayers.

[merryfl]

Thanks everyone. I really appreciate your love and support. As far as letting you know, the Social Worker at Shands suggested I bring my laptop with me when I come. They have free WiFi and lots of their patients spend their time pre-surgery e-mailing or blogging. And the same after surgery as soon as they are able. I will try to do that for you all.

I know down deep you are all right. It just all comes down on me sometimes. Today we went and got our cell phones (a requirement) so that is one step. You are right about how much I will need to take with me. Someone can run to WalMart and pick me up some sweats, etc. I need new clothes anyway!!.

I think I will take a day and set up auto pay - it has always made me a little nervous, but I'll give it a try for all the important stuff (mortgage, electric, phone, insurance and credit cards). Good idea. Sure would save me time. And since Lee and I both get disability checks auto-deposited, the money is there. Another good idea. Thanks Colleen.

Okay -- I'm gonna take a deep breath and decide it will be fine. (I still have some pred in my system, which doesn't help )

[virginia]

Merry, My brother had a Tx. He was so thrilled.. and the day they called he called me and was sooo happy, because he had been so sick for so long.
then afterwards I think I was a litlte jealous , he had no use for any of the breathing equipment. He had a second chance at life...
I'm happy for you, hold on to Gods hands he will see you through, and while your waiting he will give you confort, just rest in him...
A big hug Smiley,
Like Colleen says if you change your mind you can say no...
Sending you and Colleen a big hug....

[Cherylmcc]

Oh boy -- that's marvelous news. I too think it's natural to be afraid. I think we'd all be frightened. But it is amazing what the Dr's can do today and this will be such an improvement for you.
I'm rooting for you.