You’re certainly doing all the right things! So, hang in there. Remember, everyone’s bodies are different. And, our bodies all adjust differently to our transplant surgery and our meds. And, healthy eating and exercise, at least to the ability one can, is the best practice for our bodies.
After surgery I was in the hospital on a dreadful feeding tube for a month and a week, and then sent home with it! I wasn’t getting enough protein and struggled to gain weight. And, still haven’t gone back to my pretransplant weight. But, at least my liver doctor doesn’t tell me I’m malnourished anymore!
Thanks for the encouragement and I certainly wouldn’t want the feeding tube. Glad to be getting healthy and I actually look forward to going to the gym. Home exercising tends to other things happening that interrupt my workout and don’t give me the same kind of reward.
@linmarie ...thanks for suggestion about the books. I must sound
Ungrateful. I am not. I just did not know or were told about the
Possibility of developing a hernia. The side effects from the drugs
Not feeling myself till before my surgery in October of 2020. It is what it is. The patients who went thru a transplant and felt no change or effects from the drugs I salute them. But thank you.
You might enjoy these videos. I found them fascinating and informative! NOVA episode titled, “Transplanting Hope -https://www.pbs.org/wgbh/nova/video/transplanting-hope/.
It is intense and very emotionally affecting. However, I gained an even stronger appreciation for all of the people who played a role in my “transplant journey.”
The Surgeon’s Cut, Episode 3, Living Donor, is another excellent show, available on Netflix - https://www.netflix.com/us/title/81004466. It discusses some of the early groundbreaking transplant surgeries and portrays Dr. Nancy Ascher, the first woman to perform a liver transplant. It also follows a family preparing for a living donation from a daughter to her mother.
I watched Transplanting Hope twice, it was really good. I have not seen the other so I will look for that.
The best book I read is "When Death Becomes Life: Notes from a Transplant Surgeon" by Joshua D. Mezrich, MD.
Another is "Last Night in the OR" by Bud Shaw, MD: "Hundreds of Interlaced Fingers" by Vanessa Grubbs, MD and "Surviving Kidney Disease" by Michael Fisher MD.
I have a number I have not read yet sitting on the shelf-started a collection!
@linmarie ...thanks for suggestion about the books. I must sound
Ungrateful. I am not. I just did not know or were told about the
Possibility of developing a hernia. The side effects from the drugs
Not feeling myself till before my surgery in October of 2020. It is what it is. The patients who went thru a transplant and felt no change or effects from the drugs I salute them. But thank you.
I understand. I feel a little ungrateful sometimes. 🙂 I mentioned the books because those readings made it so clear to me that transplants did not work until the medicines were discovered. Many animals and desperate people died as they tried to figure out why a transplant would reject so quickly.
My home doctor says "they are nasty drugs but you need them".
My phone alarms several times a day for medicines. Mentioning medicine side effects, i have stomach ulcers and low Magnesium, both related to the drug side effects. So it's been scopes and Mg infusions and side effects of side effects (the gut doesn't like a dozen Mg pills daily!) I did have a hernia (it hurt!) fortunately caught and repaired one week after transplant. .
I do not feel like myself either! Five years, but my beloved husband died of pancreatic cancer shortly before my transplant, and now I have been isolated with COVID for over a year--I have much to be grateful for, but it is hard. Hang on--both of us.
@linmarie ....thank you for your reply...u are all angels.....I think when
I was told I had liver cancer and it full of cirrhosis I walked around in denial. Usually I get on the internet and type my brains out.i went thru a lot of mri’s...and blood testing. I was told I will have to take
Drugs the rest of my life..I said oh, ok.did not ask name of the drugs
So no research...my head was in the clouds or up my ... I went on to have two procedures interventional radiology y90 and ablutions.
Did not drink any alcohol watched food intake. Then all of a sudden
Out of no where I got the phone call a liver was found, I thought it
Was a prank call, the women on the other end of the call assured me it was not. She said b here at hospital in an hour, so I just did the motions of getting ready called the cab, said good bye to my little furry booboo, gave him to my neighbor and left. When I got to the hospital and was in a room to undress, I never met with the
Anasthesia dept.was wheeled in surgery have no recollection of
Anything. Next thing I woke up a week later in ICU with a tube in my
Throat. Apparently could not wake up....so I did not research my
Situation, but I have in Dept since I got my hands on my iPad..
Well it is official, received the call on Friday that my surgery for abdominal wall reconstruction is cancelled until this “surge” of COVID is lowered again. ICU beds and staffing are maxed out. Though I am a little disappointed, I am once again reminded how thankful I am for a 2nd chance at life and also for the fact that I am not in one of those ICU beds struggling for my life. So today I anxiously await for my surgery date, as that will mean that once again, we might be able to return to some sense of normalcy.
Well it is official, received the call on Friday that my surgery for abdominal wall reconstruction is cancelled until this “surge” of COVID is lowered again. ICU beds and staffing are maxed out. Though I am a little disappointed, I am once again reminded how thankful I am for a 2nd chance at life and also for the fact that I am not in one of those ICU beds struggling for my life. So today I anxiously await for my surgery date, as that will mean that once again, we might be able to return to some sense of normalcy.
@melody12, I can feel your disappointment at getting the official cancellation of your surgery. I think there must be some comfort in the reassurance that you are on the 'radar' of your surgical and transplant team and will be notified once things open up again. I have felt that way when my transplant team or any of my medical providers have contacted me about any changes or disruptions.
Melody, I admire your positivity as you recall the gratitude for your gift of life. I know that you will be relying on that strength as you once again wait for a call to proceed to surgery that will bring you to the next stage of healing.
Well it is official, received the call on Friday that my surgery for abdominal wall reconstruction is cancelled until this “surge” of COVID is lowered again. ICU beds and staffing are maxed out. Though I am a little disappointed, I am once again reminded how thankful I am for a 2nd chance at life and also for the fact that I am not in one of those ICU beds struggling for my life. So today I anxiously await for my surgery date, as that will mean that once again, we might be able to return to some sense of normalcy.
I had liver transplant 5/30/20 and all went extremely well and even left hospital 2 days early. In Nov., I mention I had gained 5 lbs. and did this until I successfully had gained 45 lbs. Not until Feb., did I start having pain in lower R side and near belly button. Three trips to ER, many tests and no sign or indication that anything was wrong. By then, I became extremely discouraged, exhausted and at this point angry. Finally, in May this year a baby size belly popped out my front right side. NOW, I couldn’t get enough help. No scientific evidence or test detected it, but seeing is believing. I was told by a Trauma surgeon that, I needed a complete abdominal was reconstruction. Operation would require him as the Trauma Surgeon and a Plastic Surgeon doing a tag team match sort of thing. I was just about ready to be scheduled for surgery when it was put on hold due to COVID.
Needless to say I am currently waiting as patiently as I can, due to the situation. (I hope I don’t deliver in the meantime). Had to add a little humor. Has anyone else had this type of dilemma?
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Thanks for the encouragement and I certainly wouldn’t want the feeding tube. Glad to be getting healthy and I actually look forward to going to the gym. Home exercising tends to other things happening that interrupt my workout and don’t give me the same kind of reward.
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Helpful -
Hug
2 Reactions@linmarie ...thanks for suggestion about the books. I must sound
Ungrateful. I am not. I just did not know or were told about the
Possibility of developing a hernia. The side effects from the drugs
Not feeling myself till before my surgery in October of 2020. It is what it is. The patients who went thru a transplant and felt no change or effects from the drugs I salute them. But thank you.
-
Like -
Helpful -
Hug
2 ReactionsI watched Transplanting Hope twice, it was really good. I have not seen the other so I will look for that.
The best book I read is "When Death Becomes Life: Notes from a Transplant Surgeon" by Joshua D. Mezrich, MD.
Another is "Last Night in the OR" by Bud Shaw, MD: "Hundreds of Interlaced Fingers" by Vanessa Grubbs, MD and "Surviving Kidney Disease" by Michael Fisher MD.
I have a number I have not read yet sitting on the shelf-started a collection!
-
Like -
Helpful -
Hug
2 ReactionsI understand. I feel a little ungrateful sometimes. 🙂 I mentioned the books because those readings made it so clear to me that transplants did not work until the medicines were discovered. Many animals and desperate people died as they tried to figure out why a transplant would reject so quickly.
My home doctor says "they are nasty drugs but you need them".
My phone alarms several times a day for medicines. Mentioning medicine side effects, i have stomach ulcers and low Magnesium, both related to the drug side effects. So it's been scopes and Mg infusions and side effects of side effects (the gut doesn't like a dozen Mg pills daily!) I did have a hernia (it hurt!) fortunately caught and repaired one week after transplant. .
I do not feel like myself either! Five years, but my beloved husband died of pancreatic cancer shortly before my transplant, and now I have been isolated with COVID for over a year--I have much to be grateful for, but it is hard. Hang on--both of us.
-
Like -
Helpful -
Hug
2 Reactions@linmarie ....thank you for your reply...u are all angels.....I think when
I was told I had liver cancer and it full of cirrhosis I walked around in denial. Usually I get on the internet and type my brains out.i went thru a lot of mri’s...and blood testing. I was told I will have to take
Drugs the rest of my life..I said oh, ok.did not ask name of the drugs
So no research...my head was in the clouds or up my ... I went on to have two procedures interventional radiology y90 and ablutions.
Did not drink any alcohol watched food intake. Then all of a sudden
Out of no where I got the phone call a liver was found, I thought it
Was a prank call, the women on the other end of the call assured me it was not. She said b here at hospital in an hour, so I just did the motions of getting ready called the cab, said good bye to my little furry booboo, gave him to my neighbor and left. When I got to the hospital and was in a room to undress, I never met with the
Anasthesia dept.was wheeled in surgery have no recollection of
Anything. Next thing I woke up a week later in ICU with a tube in my
Throat. Apparently could not wake up....so I did not research my
Situation, but I have in Dept since I got my hands on my iPad..
-
Like -
Helpful -
Hug
1 ReactionWell it is official, received the call on Friday that my surgery for abdominal wall reconstruction is cancelled until this “surge” of COVID is lowered again. ICU beds and staffing are maxed out. Though I am a little disappointed, I am once again reminded how thankful I am for a 2nd chance at life and also for the fact that I am not in one of those ICU beds struggling for my life. So today I anxiously await for my surgery date, as that will mean that once again, we might be able to return to some sense of normalcy.
-
Like -
Helpful -
Hug
3 Reactions@melody12, I can feel your disappointment at getting the official cancellation of your surgery. I think there must be some comfort in the reassurance that you are on the 'radar' of your surgical and transplant team and will be notified once things open up again. I have felt that way when my transplant team or any of my medical providers have contacted me about any changes or disruptions.
Melody, I admire your positivity as you recall the gratitude for your gift of life. I know that you will be relying on that strength as you once again wait for a call to proceed to surgery that will bring you to the next stage of healing.
What will you do during the wait?
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Helpful -
Hug
2 ReactionsHi @melody12 May I ask which hospital location called to cancel your elective surgery? Is it Jacksonville in Florida? Thank you!
I had liver transplant 5/30/20 and all went extremely well and even left hospital 2 days early. In Nov., I mention I had gained 5 lbs. and did this until I successfully had gained 45 lbs. Not until Feb., did I start having pain in lower R side and near belly button. Three trips to ER, many tests and no sign or indication that anything was wrong. By then, I became extremely discouraged, exhausted and at this point angry. Finally, in May this year a baby size belly popped out my front right side. NOW, I couldn’t get enough help. No scientific evidence or test detected it, but seeing is believing. I was told by a Trauma surgeon that, I needed a complete abdominal was reconstruction. Operation would require him as the Trauma Surgeon and a Plastic Surgeon doing a tag team match sort of thing. I was just about ready to be scheduled for surgery when it was put on hold due to COVID.
Needless to say I am currently waiting as patiently as I can, due to the situation. (I hope I don’t deliver in the meantime). Had to add a little humor. Has anyone else had this type of dilemma?
Sorry, I had to have a complete abdominal wall reconstruction.