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Post by Colleen-NC on Feb 19, 2009 12:23:42 GMT -5
I have an appt. at the transplant clinic on March 5th and Dan is going to Daytona for bike week (I am making him go he needs it) and I am going with a good friend of mine and I am trying not to get too stressed about Dan not being there with me. I know this is just ridiculous but sometimes any changes to our routine are enough to send us into a tail spin and I am trying not to let this happen. I trust Lori with my life and she will be here for me after transplant to help out so she is great, its just me, god help me LOL I know there are a lot of others who are much worse off than I and I am trying not to be such a brat for lack of a better word !!!! Hopefully just writing about it here will make me feel better, thanks for putting up with me!!
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Post by blondie on Feb 19, 2009 14:15:37 GMT -5
Colleen, you have a real solid reason for being nervous. You are facing major surgery and all the scary stuff that goes with it. But I know a couple of ladies who had transplants and they are doing amazingly well. So will you. I know you're just going for an appt, so keep your chin up. They know what they are doing...Hugs for you, Pat
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Post by Toby on Feb 19, 2009 14:24:06 GMT -5
Colleen, is this an appt. or is there a chance they will be doing the transplant? You must be a wreck over it but you are so young that getting a new lung for you will be like being born again! I'll say a prayer and think of you that day. This is what the forum is all about! Helping each other in sick and stressful situations. I'm sure your girlfriend will be very supportive.
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Post by mystyblu1119 on Feb 19, 2009 17:21:43 GMT -5
Wow!! How fortunate you are to be considered for transplant, but I would want my man with me too. My Doc said to me, "if you were 20 yr. younger you'd be a good candidate" big consolation! Best wished for a great outcome. Bobbi
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Post by sue on Feb 19, 2009 17:21:44 GMT -5
Colleen, you have every right to feel the way you do........and you are handling so well! I think you're intitled to be a "brat"......glad you have such a good friend by your side!!
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Post by mystyblu1119 on Feb 19, 2009 17:22:07 GMT -5
Wow!! How fortunate you are to be considered for transplant, but I would want my man with me too. My Doc said to me, "if you were 20 yr. younger you'd be a good candidate" big consolation! Best wished for a great outcome. Bobbi
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Post by mystyblu1119 on Feb 19, 2009 17:22:48 GMT -5
Wow!! How fortunate you are to be considered for transplant, but I would want my man with me too. My Doc said to me, "if you were 20 yr. younger you'd be a good candidate" big consolation! Best wished for a great outcome. Bobbi
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Post by Colleen-NC on Feb 19, 2009 17:30:44 GMT -5
Hi Mysty, I already am on the list, its just a check up. Its just that I am so used to Dan being with me that I am out of my element with someone else taking me. I have been on the transplant list for over 2 years so I pretty much know what to expect. Its just going to be strange with out Dan taking me. I will be fine and Lori is an awesome caretaker so I am worrying for nothing!  |
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Post by maryaz on Feb 19, 2009 23:59:28 GMT -5
Colleen; I totally relate to you wanting Dan there. In the beginning I was trying to get Joe to back off some. Now I have got so use to him being there, and if he is not I can get uncomfortable.
When Joe was doing the cancer, I did do really well with my youngest son taking me places, including the root canal dentist. I think anyone else I would not feel right.
You will be fine. Besides, remember, we will all be surrounding you too. You just won't see us.
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Post by roadtrip on Feb 20, 2009 10:03:16 GMT -5
I am like you, my husband is the person I turn to for medical issues. He 'balances' me. I too would want my husband at the appt. because he would know 1st hand what to expect when the time comes.
However, life goes on and it sounds like Dan really, really needs a break. I am glad he is going to bike week in Daytona. He will come back refreshed. Sounds like Lori is a real friend.
Good luck at your appt.
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Post by virginia on Feb 21, 2009 9:26:58 GMT -5
Colleen , you just rely on your friend some, and you will be fine, want be for long, I know how you feel , I'm the same way,
You just be really careful and maybe you and you and Lori can enjoy some girl time ...Be thinking of you...
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Post by diannelou on Feb 27, 2009 0:21:28 GMT -5
C olleen, If you dont mind, would you tell me what constitutes the criteria for a lung transplant? Did you ask your Dr or did he/she mention it to you first? The reason Im questioning is because it seems like there are so many people with COPD that would be well served with a transplant yet it also seems like very few get them. Im sure there is an availability issue as there is for all organs but I still feel like there must be something else.
Thanks, Dianne
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Post by Colleen-NC on Feb 27, 2009 7:10:22 GMT -5
I believe that you have to have about or less than 20% lung function and other than lungs be in pretty good health overall. My Doctor was very persistent that I go because I was so young. I was 37 when first diagnosed and was foolish and did not quit smoking for almost 6 more years and ended up with 14% left. I am now 46 and have been on the list since 10/06. Lung transplants are harder, many lung are just not suitable for transplant, they are very fragile organs and there's a 25% chance that I will make it as far as the operating room and be sent home because the lungs are no good. So I go every 4 months to the clinic for a PFT, 6 min.walk test and blood work, weight check and overall check up. Life is good!
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Post by Toby on Feb 27, 2009 9:37:22 GMT -5
diannelou, to add to Colleen's post. My pulmonologist told me that you get to a certain point where there is nothing you or a doctor can really do for you. He told me, although I am not in need of a transplant now, I would be pretty soon. He said the testing is very intense and takes a long time as Colleen stated, so to get all that done now. The paperwork would take time too. Does any of that make sense? Maybe Colleen can tell me if I stated that right.  |
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Post by jojo on Feb 27, 2009 22:30:14 GMT -5
Colleen, best of luck to you next Thursday, I know you know how blessed you are to have such a friend! It's great that Dan is getting away for the race, but betting his mind will be on you. Maybe you can relax w/ a martini . .after tests  |
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Post by roadtrip on Mar 4, 2009 18:51:26 GMT -5
Good luck to you tomorrow Colleen. We will be thinking of you!
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Post by carole on Mar 5, 2009 16:28:51 GMT -5
Hi Colleen this is my first time here reading and posting. I'm praying all is well with you today too. I go to Cleveland for my 3 month check Sunday but I'm not listed yet as you already know. But others here don't.
Toby I would say if anyone thinks they might consider transplant start while you do feel good and your organs are all good. And stay active in a pulmonary rehab program. That has kept me going. I'm about at 17% as of last trip lung function. Still to healthy they say although I sure would question that one.
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Post by Colleen-NC on Mar 5, 2009 17:16:37 GMT -5
SO good to see you post Carole, good luck at your check, let us know how your making out. There is another member here that is on the list, her name is Merry and she is listed in Florida. Things are the same for me, not much changed, fev1 still at 14%. When its time, ,its time and not much you can do except try to stay in good shape and not get sicker!!
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Post by muffin on Mar 5, 2009 22:52:53 GMT -5
Colleen, wish I had seen this sooner. I know it is hard to out of your element and with someone although you love her, does not take the place of your husband, the one you share your dearest and nastiest of times. I think once started out you will settle right in. Good luck with your appointment and I'll be thinking of you.
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