General
What advice would you give to someone waiting for an organ transplant?
I was ask this on another forum. I thought it would be somewhat of an eye opener for some. I'm not really the one to ask!
I really can't say a great deal about the waiting process. I was a 0.001 percent chance. A blessing of God, in that I got placed on the list at 3pm and got "the call" at 7 pm. and was out of surgery by noon the next day.
I had gone through all of the preliminary stuff for about 6 months. However, when I got bad, I got really bad and my MELD wentfrom mid 20's to 34 virtually over night. I am not a patient person so I am truly doubly blessed by not having to wait. I was teaching two weeks prior to transplant.
With that being said, I would advise anyone to trust the process. These people are the best in the world. Try to keep your strength and body mass (you will need it). Last but not least have a caregiver that you trust and is patient with you. You will need them and they will definately need patience with you.
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Transplant Patient
I had a really chaotic, traumatic transplant surgery, and what I’d heard while waiting was “best case scenario” stories. Which if someone had told me pre transplant what my journey would look like I probably would have panicked. But I’d say anticipate it’s going to be really hard. Just because it’s hard doesn’t mean it’s bad, and you can do hard things.
also find a good therapist! Mental and emotional support is so under rated, and so vital. Surround yourself with people who can support you, do the work to connect with yourself and work through your issues, and don’t be afraid to admit you need help.
I ditto finding a therapist or some sort of care team that is outside of your medical team. I would also say that its okay if the hope you have ebbs and flows, but always do your best to hold your head high and never be afraid of asking for help. You are not a burden.
This discussion might also bring some perspective to this discussion.
https://transplantlyfe.com/discussion/844/one-word#latest