This is a very difficult part of this process. I remember telling someone during the evaluation that I felt as if I were waiting for 'permission to hope'. Just know this, the caring doctors, nurses, coordinators etc. really do have to focus everything, time, services, etc. based on priority. Know that when the time comes that they need to get with you TODAY, they will get with you TODAY. And right now maybe someone else is getting that today response. Be strong. Believe. Thoughts become things, so think the good ones.
Oh, I'am so blessed to have you! You said it all, "Thank You." You are the answer to my prayers. I can't "Thank you" enough for your words of wisdom! I so much agree with every word you said, and your offer to help is heartfelt. I can see our little community will be greatly blessed by you and your knowledge. Please post any and all information you have about liver diseases, pre&post transplant, etc. anything. I'm looking forward to being your partner and friend in helping others learn about transplant. God Bless you, friend!!! Kande
Hi I like your posting to others. Thanks a lot for being here. I am a 13 on the meld score now and have assisted others through our non profit outreach program become listed and transplanted.
It is amazing how quickly this illness progresses once it gets a foot hold. I feel that keeping posative is paramount in the ability to heal and recover from major chronic illness and severe medical procedures.
Diet is a huge part of my life now as it has been for years but with this going on it has many benefits which are plainly seen by my resilience and rebounding in the health arena. I am not in denial: I need a new liver. I am an optimist and fully feel that our thoughtforms help guide our future so for this reason I remain hopeful and educated.
The transplant procedure may be overwhelming but just remember the end is the desired goal and not the in the middle things we have to do to make sure we are able to take the surgery and also have a support system in place. I found with my "kids" I took for evaluation that if they did not have a good support system for following up after transplant they were often rejected so get this together before you make the try for a liver. Often it is the most difficult thing to acheive and we have to really feel we are worth it so to speak.
Keep on keeping on and never give up! Keep a posative outlook even in the face of severe pain and suffering. Help another person who is in worse shape than you are today. Follow directions from other persons who have been through this and also pay close attention to the needs of your transplant center because there are a ton of others needing livers out there. This is why all the hoopala and for good reason really.
Be well! Listen to your doctors and study and educate yourself as best you can. Support groups are a great thing and hopefully there is one in your area or you may start one. If anyone needs help setting up a support group just ask me ok?
Hi patsyanne, I probably can answer most of your questions. I know transplant centers are a very busy place, but always feel free to call your coordinator. The next step will be to get you set up for various tests. The test are to determine if you are strong enough for transplant surgery. Your coordinator will set up your appointments for evaluation. The tests will include heart, lungs, x-ray, labs, counciling, and a few more. The time frame varies from each transplant center. All of my tests were completed in 3 months. After you complete your tests, you will get a pager to carry on you at all times. You will go to your regularly scheduled doctors appointments, and have labs done. The lab work will tell the doctors how well you are doing and what medicine you need to take. You will need different medicines as you progress along. The labs also tell the doctors your MELD score. The MELD score determines when you need to transplant. You will most likely be put on UNOS list when your MELD is around 16/18. That is also determined by UNOS and your transplant center. The center I went to believes in low MELD score transplants, (I was a 15 when I transplanted). So you pretty much wait at that point and time. Your doctors do keep a close watch on you. I think I have covered everything, but feel free to contact me if you have more questions. :o) Kande
I'm on a liver transplant list also. I was assigned a coordinator. She is my liaison whenever I have a question or concern. I've been on the list since 2002.
Hello Mare, You are so up beat sweetie! There is no doubt in my mind that you will be fine. That ole paper work is a pain, but once it is done thats it. It will take 6months to be approved for SSI, then you will get your check the 7th month. You will be approved. If you have any problems, make sure your doctors know. They will write a letter for you so you won't have any problems. Take care sweetheart!
Hi Kande, Today I went to Medicaid office they wanted info as far back as 20 years they want to see if I did anything to cause my disability- and then told I have to apply for SSI - it will make it move faster -
The Tx is going to be a breeze once I get all this paperwork taken care of for the government - sometime I fall back into Mute & feel or think nothing and then again I am rejoicing because I am given a chance to live healthy so I Will Rejoice
Thank you Kande for the word POSITIVE
Hi Mare, I have had a liver tx., and would love to help you. Start your questions, and I'll do my best to answer them. One thing I do want you to know is tx. is not as bad as you may have heard. If I can do it you will to, and be health and happy! So think positive, and you will be thru this before you know it. Promise!!!