Success Stories

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Sometimes it's hard to find Success Stories, Positive Discussions or groups that are uplifting on the site. We want to make it easier for you to find them....

So if you leave a link to a positive Success Story or a Blog Discussion post on the site in the comments below, we’ll move it into the main body of this post for easy access for everyone!

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At Last – The Liver Transplant!

As some of you may have noticed, I have been absent from postings for some time. My prayers and many on my behalf were answered on September 21st, receiving a healthy new liver. The seven hr. operation went well! Post-op pain was well controlled.

I could not find the discussion group regarding post liver transplant issues (if there is one). The past two months have not been easy, by any means, but I have learned a lot. Here are the top twenty insights or surprises that I wish I would have known about prior to surgery:

  1. “Dry runs” (where the donor liver is not appropriate for the patient) happen much more often than transplants. I had three before I finally got the right liver.
  2. If your MELD # gets to the top of the list, expect to be in the hospital for a week or more, being very sick, and waiting for a liver to arrive.
  3. You may lose almost every ounce of fat on your body and most of your muscle. I lost over 55 pounds from m
  4. y pre-disease state (185lb).
  5. Get some clothes for that smaller body before it’s too hard to shop.
  6. As liver damage progresses, our immune systems can’t fight off many bugs, bacteria, and viruses. I had a terrible time with a type of mite & skin rash called scabies.
  7. Your caretaker will need backups – two or more. The primary caretaker, ideally, should have some scientific/medical experience or be very obsessive-compulsive.
  8. Get used to a low salt diet prior to your transplant.
  9. Try to keep your walking ability up every day as permitted by the docs. Walking without help is a “get out of jail free” card!
  10. Try to get to know the nurses and other help on a friendly basis. Greet them warmly. A “dissed” nurse can make your life miserable.

10. The nurse call button is a very important item for your comfort. Without it you may be uncomfortable for hours. When anyone starts to the leave your room, make sure your call button is in your close proximity.

11. Cell phones very easily get lost or stolen in hospitals. Have an arm holster or other way to keep close track of it.

12. Make a drawing as to how you would like your hospital room set up (bed angle, bedside table, commode, waste basket, call light, chairs, etc.) The nurses and staff can then keep things in order to your liking.

13. Don’t fear having our stomach (ascites fluid) tapped off or a catheter in your bladder. They are not very painful and very relieving.

14. The liver is very important to the health of other organs (heart, kidney, pancreas, etc). They can go haywire while the new liver is starting up.

15. Dietary needs may change dramatically after transplant.

16. Your veins may not tolerate all of the blood drawing that is necessary, thus you may be offered a “PIC” line, central line, or dialysis line. I have had all three of these alternatives, and they have saved me many painful IV sticks.

17. Dialysis for the kidneys 3X/wk is frequently necessary for a month or two after liver transplant.

18. Get to know what your medicines look like and their purpose. Have the nurse or caretaker go over each medicine you are about to take.

19. You and your caretaker need to be proactive as possible – especially when things don’t seem quite right.

20. Be tough, ask questions, and be ready for the unexpected. Respect the unfortunate donor, everyone who has helped and prayed for you, and your new lease on life, by following all of the rules and schedules set up by your transplant team!

3

At Last – The Liver Transplant!

As some of you may have noticed, I have been absent from postings for some time. My prayers and many on my behalf were answered on September 21st, receiving a healthy new liver. The seven hr. operation went well! Post-op pain was well controlled.

I could not find the discussion group regarding post liver transplant issues (if there is one). The past two months have not been easy, by any means, but I have learned a lot. Here are the top twenty insights or surprises that I wish I would have known about prior to surgery:

  1. “Dry runs” (where the donor liver is not appropriate for the patient) happen much more often than transplants. I had three before I finally got the right liver.
  2. If your MELD # gets to the top of the list, expect to be in the hospital for a week or more, being very sick, and waiting for a liver to arrive.
  3. You may lose almost every ounce of fat on your body and most of your muscle. I lost over 55 pounds from my pre-disease state (185lb).
  4. Get some clothes for that smaller body before it’s too hard to shop.
  5. As liver damage progresses, our immune systems can’t fight off many bugs, bacteria, and viruses. I had a terrible time with a type of mite & skin rash called scabies.
  6. Your caretaker will need backups – two or more. The primary caretaker, ideally, should have some scientific/medical experience or be very obsessive-compulsive.
  7. Get used to a low salt diet prior to your transplant.
  8. Try to keep your walking ability up every day as permitted by the docs. Walking without help is a “get out of jail free” card!
  9. Try to get to know the nurses and other help on a friendly basis. Greet them warmly. A “dissed” nurse can make your life miserable.

10. The nurse call button is a very important item for your comfort. Without it you may be uncomfortable for hours. When anyone starts to the leave your room, make sure your call button is in your close proximity.

11. Cell phones very easily get lost or stolen in hospitals. Have an arm holster or other way to keep close track of it.

12. Make a drawing as to how you would like your hospital room set up (bed angle, bedside table, commode, waste basket, call light, chairs, etc.) The nurses and staff can then keep things in order to your liking.

13. Don’t fear having our stomach (ascites fluid) tapped off or a catheter in your bladder. They are not very painful and very relieving.

14. The liver is very important to the health of other organs (heart, kidney, pancreas, etc). They can go haywire while the new liver is starting up.

15. Dietary needs may change dramatically after transplant.

16. Your veins may not tolerate all of the blood drawing that is necessary, thus you may be offered a “PIC” line, central line, or dialysis line. I have had all three of these alternatives, and they have saved me many painful IV sticks.

17. Dialysis for the kidneys 3X/wk is frequently necessary for a month or two after liver transplant.

18. Get to know what your medicines look like and their purpose. Have the nurse or caretaker go over each medicine you are about to take.

19. You and your caretaker need to be proactive as possible – especially when things don’t seem quite right.

20. Be tough, ask questions, and be ready for the unexpected. Respect the unfortunate donor, everyone who has helped and prayed for you, and your new lease on life, by following all of the rules and schedules set up by your transplant team!

4

Thanks so much for your valuable insight. I will keep it for future reference. Hope your recovery is going well!

5

Thanks EAD3 :slight_smile:
This is the info which unfortunately everyone on this community will need a day :frowning:

6

Having a hard recovery following my colectomy, I completely agree with #8-the walking. That was the best thing I could do for myself while in the hospital.

Two things I can add that helped me a lot:

1. Keeping focused on the long term, although getting through the day to day "stuff" is tough.

2. Having a good sense of humor will help you get through the bad days, for you will have them.

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I'd like to second Stephan motion on humor. The more time laughing, the less time for negative thoughts, and the nurses need a break from all the illness they see.

EAD3