I would like to invite our members to share in a discussion about planning for that "phone call" when your new liver is waiting for you. I'm sure all of us have different thoughts and have different methods for planning for that magical moment that we all pray will happen sooner than later for those of us on the transplant list. We have a certain amount of time from when the call comes and when we must be at the hospital for surgery. A lot is going to go through our minds at the time, and it will be easy to panic and forget all that we need without some good pre-planning.
I'd like to ask as many of our members that have been through a transplant to share how you prepared, or the lack thereof and anything you learned from the experience that might help those of us who are waiting for a liver to be better prepared for the call. Of course we welcome any and all thoughts from those who haven't been transplanted but have a good plan. This includes things like what to pack, what not to pack, who to call or email and how you prepared for that. So many things to do in a short amount of time. Let's make this as informative as possible so we can all benefit from a wealth of information that we can all contribute towards.
Thanks Jeff for the response. But I really am serious about coming up with a list. Any suggestions you or the others in the group may have would be greatly appreciated. Thanks!
14. Although I did not bring this, I have seen it recommended-a roll or two of your favorite toilet paper. This makes sense, because what the hospital calls toilet paper, I call sandpaper.
Thanks Jeff for the reply. I appreciate your input. I've also appreciated the good responses you are giving to our new members. We certainly want to be an encouragement to them as we can. It was a scary thing when first diagnosed to see your whole life go by in an instant, thinking of your wife and family and what could happen. We all certainly need daily grace for this disease.
Jeff - Necco wafers?? I love those, haven't seen them in ages. Surprised to see on list though! My last hospitalization in Nov I brought along oranges which saved my life - fresh and juicy, opposite of the nasty glop served up. Light biscuits a good idea, I have those along too. If recovering from transplant, could be stricter re outside food. ?
Alix, I am sure they would be somewhat more stricter than when I had my surgeries. Nothing was said about restricting outside food. I guess once you are out of ICU, then they might be a little more relaxed, but do not know.
We had our check list and just went right down it to pack. In fact my wife that very morning had been impressed to go ahead and begin packing, so when I called her close to lunch that we had received the call to go to the hospital she was nearly finished. It worked out fine. Did you see the photo I posted of that old dead liver of mine Jeff? It's something how Providence overrules the formulas and plans of men to get someone a liver when he desperately needs it. I'm so thankful to be the recipient of this gift of life. I want to continue to serve the PSC family here as I move forward after my recovery. As you know, the days in recovery are up and down but I'm going to make it by God's grace.
Mark
JeffDC said:
Mark, did you have your stuff ready when your call came in?
I am so amazed and impressed that you were able to post so quickly after the transplant. Congratulations and best wishes for a continued strong recovery.
Thank you Rivermouse. I am so thankful for this new gift of life that has been afforded to me. I know there are struggles ahead but I am thankful I don't have to walk this road alone. Me and my family have been so blessed beyond words. We are truly humbled that we were able to get this transplant. I want to keep this liver going for a very long time. Today marks the 10th day since my transplant and I'm doing well. I finally have weaned myself off of the narcotic pain meds and am only on Tylenol at this point. Trying to get my digestion back up and running as it should but we are making progress. There is uncomfortable pain at the incisions but it's tolerable with the medication. I'm still a little unsteady on my feet. Have to get up slow and not turn around too quickly. The blood pressure and pulse rate are still getting used to all this amazing new blood filtering mechanism of this liver so I've got to be careful. Haven't fallen yet, so that's good. Need lots of exercise right now and plenty of fluids. There sure is a lot of medication to take though. I was adding up the cost of the meds if I didn't have insurance and it adds up to over $3,600 per month right now. Probably 40 pills a day. I know this will go down over time which I look forward to. Take care everyone. I will be in touch.