Author |
Message |
S17
Member Username: S17
Post Number: 1 Registered: 09-2011
| Posted on Tuesday, September 06, 2011 - 01:31 pm: |
|
Hey guys I'm 17 and finally after my pre assessment, and 2 ercp's (they didn't work too great) I've been put on the waiting list! I was diagnosed with PSC and UC when I was 3. And I was just wondering if I could ask you guys a few questions.. |
Mariel
Member Username: Mariel
Post Number: 70 Registered: 02-2008
| Posted on Tuesday, September 06, 2011 - 01:39 pm: |
|
Ask away! My huz has PSC and I am an amateur expert! ;)
Mariel, wife of PSCott www.caringbridge.org/visit/scottcarr |
|
S17
Member Username: S17
Post Number: 2 Registered: 09-2011
| Posted on Tuesday, September 06, 2011 - 01:43 pm: |
|
Well the first thing I was wondering was that if post transplant the spleen stays enlarged? |
S17
Member Username: S17
Post Number: 3 Registered: 09-2011
| Posted on Tuesday, September 06, 2011 - 01:51 pm: |
|
and how long does the jaundice normally take to reverse? Also does the bloating of the abdomen disappear as well? And after did you notice he has a lot more energy? Less fatigue? |
Dave
Member Username: Bill200
Post Number: 3 Registered: 09-2011
| Posted on Tuesday, September 06, 2011 - 02:24 pm: |
|
Spleen can stay enlarged for a year after and may not ever completely return to normal if fibrotic. Bloating due to fluid I would think goes right away but the puffy tissue from surgery is supposed to go away in a year. Mine has not after six months. Energy's subjective. Some people are great some or fatigue. They say a lot of it depends on how you were before the transplant and your mental outlook after, and exercise and how you take care of yourself. I find it's a combination of things and you may be both. |
DAND33
Member Username: Dand33
Post Number: 7 Registered: 08-2011
| Posted on Tuesday, September 06, 2011 - 02:40 pm: |
|
If you Google "Dan's Liver Blog" You can see what experience I had. I was lucky. I am 6 months post transplant and I look at it like something in a previous life. |
S17
Member Username: S17
Post Number: 4 Registered: 09-2011
| Posted on Tuesday, September 06, 2011 - 05:02 pm: |
|
Thanks guys, also does age have anything to do with how you may recover post transplant? Goodjob Dan, I can't believe you left the hospital so quickly! |
Joe Berry
Forum Leader Username: Joe910
Post Number: 293 Registered: 08-2008
| Posted on Tuesday, September 06, 2011 - 07:21 pm: |
|
Hi S17, Diagnosed with PSC and UC at three - that is quite a cross to bear, I am almost four years post (transplanted due to PSC) and my spleen is still enlarged. I was 58 when I was transplanted. My jaundice was noticeably less within five days, but took three or four weeks to completely fade away and leave my eyes, As for the bloating, it took almost four weeks for me to feel like I wasn't bloated. As for the fatigue, mine was backwards. I had fatigue only twice with PSC, The first was in 1990 when I was diagnosed. It lasted until the bout of cholangitis was over. I had it again six weeks prior to transplant. After transplant I had fatigue for 15 months. I exercised my body and mind as much as possible and it finally went away and has stayed away. As you already know PSC is really unique for almost everyone who has it. I know other PSC'ers who have regained their energy almost instantly. Post-transplant has its ups and downs, but it is still miles ahead of where it was.
|
S17
Member Username: S17
Post Number: 5 Registered: 09-2011
| Posted on Tuesday, September 06, 2011 - 07:58 pm: |
|
Thanks Joe, Disappointing to hear about the spleen still being enlarged but everything else sounded promising, the jaundice going away and the bloating as well. Thanks for responding I'm actually admitted in te hospital right now due to an infection from my 2nd ERCP. I've been in since Sunday night on antibiotics and water through IV and I'm getting another ERCP tomorrow and stent replaced. |
S17
Member Username: S17
Post Number: 6 Registered: 09-2011
| Posted on Thursday, September 08, 2011 - 02:23 am: |
|
Going in for prepping for transplant tomorrow. I know you guys don't really know me but if you could pray for me I'd really appreciate it. My names Seann, yes there's 2 n's :p |
Mariel
Member Username: Mariel
Post Number: 71 Registered: 02-2008
| Posted on Thursday, September 08, 2011 - 06:15 am: |
|
You got it. Sending up prayers for a successful stent this time. Let us know how it goes, we'll be watching for updates. eHugs!
Mariel, wife of PSCott www.caringbridge.org/visit/scottcarr |
|
S17
Member Username: S17
Post Number: 7 Registered: 09-2011
| Posted on Thursday, September 08, 2011 - 10:03 am: |
|
I'm actually going for a transplant, it happened so suddenly but I am going to start getting prepped soon. Goodthing there's this forum for people who can relate |
Joe Berry
Forum Leader Username: Joe910
Post Number: 294 Registered: 08-2008
| Posted on Thursday, September 08, 2011 - 10:23 am: |
|
Wow, that was quick. Sending prayers that everything goes smoothly and for the donor's family. Keep us posted.
|
S17
Member Username: S17
Post Number: 8 Registered: 09-2011
| Posted on Thursday, September 08, 2011 - 01:12 pm: |
|
Thanks Joe, I'll update as soon as I can. |
Mariel
Member Username: Mariel
Post Number: 72 Registered: 02-2008
| Posted on Friday, September 09, 2011 - 03:00 am: |
|
Seann, hoping and praying everything went well with your transplant!
Mariel, wife of PSCott www.caringbridge.org/visit/scottcarr |
|
Angela
Member Username: Angie2011
Post Number: 27 Registered: 07-2011
| Posted on Friday, September 09, 2011 - 10:35 pm: |
|
Seann, may God bless you and your donor. Hope the transplant went well, and I wish you a speedy recovery. You and your family will be in my thoughts and prayers.
Living Liver Donor to Mother in Law 6-2-11 New York Presbyterian Hospital in NYC.. Magnificent Team The good we do today becomes the happiness of tomorrow... Unknown |
|
Liver Giver
Forum Leader Username: Beteboop
Post Number: 856 Registered: 10-2007
| Posted on Sunday, September 11, 2011 - 10:10 am: |
|
Thinking of you and hoping all is well
Dawn Forum Leader Living Organ Donation Liver Donor 11/19/07 to brother Anthony Good and bad things happen in life, but what matters, what defines us, is how we handle them |
|
S17
Member Username: S17
Post Number: 9 Registered: 09-2011
| Posted on Sunday, September 11, 2011 - 08:42 pm: |
|
Hey you guys it's been a little after 48 hours I got out at 6 pm 2 days ago and made a quick recovery in ICU I walked twice yesterday, once today, took out my catheter and one IV left in my neck. Thank you so much for the prayers and thanks god it's been such a smooth recovery. |
Joe Berry
Forum Leader Username: Joe910
Post Number: 295 Registered: 08-2008
| Posted on Monday, September 12, 2011 - 09:58 am: |
|
Great news. Sounds like the journey has been smooth so far. Keep us posted on your continued progress.
|
Angela
Member Username: Angie2011
Post Number: 28 Registered: 07-2011
| Posted on Tuesday, September 13, 2011 - 09:19 pm: |
|
That's amazing! I'm so glad everything went well, and that you are recovering so quickly. You will continue in my prayers, and may God bless you! Take care!
Living Liver Donor to Mother in Law 6-2-11 New York Presbyterian Hospital in NYC.. Magnificent Team The good we do today becomes the happiness of tomorrow... Unknown |
|
S17
Member Username: S17
Post Number: 10 Registered: 09-2011
| Posted on Wednesday, September 14, 2011 - 05:27 pm: |
|
Thanks guys, I got one of my drains pulled out today and boy did that feel weird :P How many weeks were most of you in the hospital for? Did getting out of the ever become easier? Haha I'm on solid foods now so I needto get out more often. Send me your thoughts/prayers, thank you guys so much :D |
Joe Berry
Forum Leader Username: Joe910
Post Number: 296 Registered: 08-2008
| Posted on Wednesday, September 14, 2011 - 08:39 pm: |
|
I wouldn't describe the removal of a drain as weird. Both of mine hurt like crazy. I was in the hospital for four days and spent two more weeks in a local hotel. The hospital had a floor at a local hotel and I was transported back and forth every other day for Labs and any other things they needed. Everything gets easier with time. In a month I was walking at the local mall almost daily. Solid foods will help you get stronger much faster. It took me a little over three weeks before I lost all of the surgical weight gain and was able to get in and out of bed without any help at all, but after that things started improving rapidly. Its great to hear you are doing well. It gets better each day.
|
Amy Tippins
Member Username: Amytippins
Post Number: 88 Registered: 06-2009
| Posted on Thursday, September 15, 2011 - 02:46 pm: |
|
Hey S17! I am probably the closest to your age in being transplanted since I was transplanted 18+ years ago when I was age 17. Best things that I can recommend....listen to your body, but push yourself to a healthy extent! Ask how quickly you can start working out because this will help with getting your stamina back and getting the weight off! Also, believe....believe that anything is possible. I went to college the fall after my transplant on time with the rest of my class, I went on my senior trip, prom, etc,etc. You can create the life you want...don't let your transplant define you, but define it!
RockScar Love is where we celebrate the scars of new life! www.Rock Scar Love.com A portion of sales credited to Transplant Buddies goes to COTA! |
|
S17
Member Username: S17
Post Number: 11 Registered: 09-2011
| Posted on Saturday, September 17, 2011 - 01:21 pm: |
|
Yeah Joe it does hurt but I was being positive because I still have one to go. The worst part is getting in and out of bed for sure. I'm in the hospital still but ill probably be getting out pretty soon... Hi Amy yeah I'm age 17 now, and thanks for the tips, I also worked out before the transplant so it won't be to hard to start up again :p I'm actually really skinny so I'm looking forward tp putting on some weight. And another question, did any of you use abdominal bindings while recovering post transplant? |
S17
Member Username: S17
Post Number: 12 Registered: 09-2011
| Posted on Monday, September 19, 2011 - 01:54 pm: |
|
Just getting discharged from the hospital today! One small step for me, one giant step for my new liver :p Thanks for the answers and the prayers! |
Mariel
Member Username: Mariel
Post Number: 73 Registered: 02-2008
| Posted on Monday, September 19, 2011 - 03:26 pm: |
|
YAY you! A blessing indeed and hope for those still waiting... Take it easy and keep in touch!
Mariel, wife of PSCott www.caringbridge.org/visit/scottcarr |
|
Angela
Member Username: Angie2011
Post Number: 31 Registered: 07-2011
| Posted on Monday, September 19, 2011 - 09:39 pm: |
|
Great news! Glad you're doing so well. Everyday is a new beginning to a better life. My blessing goes out to you and your family. Take it easy!
Living Liver Donor to Mother in Law 6-2-11 New York Presbyterian Hospital in NYC.. Magnificent Team The good we do today becomes the happiness of tomorrow... Unknown |
|
mrmajestyk
Member Username: Mrmajestyk
Post Number: 51 Registered: 11-2010
| Posted on Monday, September 19, 2011 - 10:27 pm: |
|
Very proud of you S17, you have a lot of courage, and a great attitude. I don't know how I would have reacted if I had to go through a transplant at age 17. God is Great!! Please let us know how everything goes, and know that your story is a great example of hope.
Hope is the feeling you have that the feeling you have isn’t permanent. -Jean Kerr |
|
Liver Giver
Forum Leader Username: Beteboop
Post Number: 858 Registered: 10-2007
| Posted on Monday, September 19, 2011 - 10:44 pm: |
|
fantastic new S17!!! May you and your new liver have a smooth recovery!
Dawn Forum Leader Living Organ Donation Liver Donor 11/19/07 to brother Anthony Good and bad things happen in life, but what matters, what defines us, is how we handle them |
|
Richard Owens
Member Username: Richardindy
Post Number: 704 Registered: 07-2007
| Posted on Tuesday, September 20, 2011 - 09:14 pm: |
|
S17 Congratulations on a new beginning! Sounds as if you are hitting the ground running. About workouts and exercise: Please tell your doctors/surgeons what you have in mind. Incision hernias are far from rare with liver transplants. You will need to follow their instructions carefully. I met a liver transplant who was in physical fitness, too. He had followed instructions and had a personal trainer but still got a hernia anyway. Just trying to save you some trouble. Have a happy recovery! May you enjoy a long run with your new liver. Richard
Kidney Transplant - Aug 30, 1986 - Type One Diabetes Liver Transplant - May 15, 2007 - Hepatic Carcinoma due to Hepatitis C |
|
Diane
Forum Leader Username: Mary_diane
Post Number: 637 Registered: 02-2009
| Posted on Tuesday, September 20, 2011 - 09:19 pm: |
|
Hi S17, I haven't had a chance to post before, but I too am wishing you best wishes and a speedy recovery. I had my transplant nearly 3 years ago, and things have gone well with my liver. Keep us posted how you are doing. Take good care
Diane Liver Transplant Nov 20, 2008 Vancouver General, BC “Sometimes our light goes out but is blown again into flame by an encounter with another human being. Each of us owes the deepest thanks to those who have rekindled this inner light.” Albert Schweitzer Diane's Blog |
|
S17
Member Username: S17
Post Number: 13 Registered: 09-2011
| Posted on Wednesday, September 21, 2011 - 07:59 pm: |
|
Thanks Richard, a hernia would be horrible. And Diane I got transplanted at VGH too! I'm doing pretty good, my house is 2 floors and the stairs aren't bad at all, it's a little easier getting out of bed, what are you supposed to do during the recovery period? All I've been doing is sitting down and watching TV, eating, and sleeping after the occasional walk. Also I get my staples or some removed tomorrow, does it hurt? Is it easier without them in? |
Joe Berry
Forum Leader Username: Joe910
Post Number: 297 Registered: 08-2008
| Posted on Thursday, September 22, 2011 - 09:48 am: |
|
I walked quite a bit after transplant to help with the boredom. You'll be back to an active lifestyle soon. The staple removal is not painful. When mine were removed it did seem like I was able to get around better. Mine did occasionally feel like they were too tight and pulling a little bit. Good luck on your journey. Keep us posted on your progress.
|
Diane
Forum Leader Username: Mary_diane
Post Number: 640 Registered: 02-2009
| Posted on Thursday, September 22, 2011 - 11:31 pm: |
|
Hey S17, Wow, that's great. You are in good hands at VGH. The support if wonderful at the outpatient clinic. Do you see Irene or Jo Ann? I agree with Joe, the staple removal is not painful, and you feel less pulling afterwards . Those early mornings going to clinic, having your lab work done, and then seeing the team were pretty tiring in the beginning, and it is such a relief when you get to the point you are only going in once every 2 weeks. You will quickly gain more strength. Joe's advice around walking is great. It really helps and speeds up the process of getting stronger. Short walks a few times a day, and you will quickly notice a difference. Best wishes, and let us know how you are doing.
Diane Liver Transplant Nov 20, 2008 Vancouver General, BC “Sometimes our light goes out but is blown again into flame by an encounter with another human being. Each of us owes the deepest thanks to those who have rekindled this inner light.” Albert Schweitzer Diane's Blog |
|
S17
Member Username: S17
Post Number: 14 Registered: 09-2011
| Posted on Saturday, October 01, 2011 - 03:11 pm: |
|
Thanks guys, but due to fluid build up, and infection in my liver from my hepatic artery clotting, I've been told that I'm going to have to be re-listed because they don't think they can take out all the infection built up in the liver. I'm going to need some more prayer please! |
Mariel
Member Username: Mariel
Post Number: 76 Registered: 02-2008
| Posted on Saturday, October 01, 2011 - 04:08 pm: |
|
Oh Seann, this sucks! You can do this, you've already come this far... Praying for miraculous healing, or Godspeed to Liver 3.0!
Mariel, wife of PSCott www.caringbridge.org/visit/scottcarr |
|
lori
Member Username: Liverlori
Post Number: 49 Registered: 04-2010
| Posted on Saturday, October 01, 2011 - 11:45 pm: |
|
I am so sorry to hear that. I hope everything turns out well for you. You are in my prayers! Lori
Pre-transplant Toronto Liver Centre Dr. Gideon Hirschfield PBC/Lupus |
|
Diane
Forum Leader Username: Mary_diane
Post Number: 644 Registered: 02-2009
| Posted on Sunday, October 02, 2011 - 02:40 am: |
|
Hi Seann, Such a bummer, but you can do this. You will get through this and on with the rest of your life. Sending prayers and healing energy your way, Hang in there, in the meantime. Are you still in hospital? Take good care Diane
Diane Liver Transplant Nov 20, 2008 Vancouver General, BC “Sometimes our light goes out but is blown again into flame by an encounter with another human being. Each of us owes the deepest thanks to those who have rekindled this inner light.” Albert Schweitzer Diane's Blog |
|
Joe Berry
Forum Leader Username: Joe910
Post Number: 299 Registered: 08-2008
| Posted on Sunday, October 02, 2011 - 09:36 am: |
|
I am so sorry to hear this news. Prayers and good thoughts are coming your way. Please keep us posted.
|
Frank J.
Forum Leader Username: Txaggie86
Post Number: 262 Registered: 03-2009
| Posted on Sunday, October 02, 2011 - 01:37 pm: |
|
Seann, I am sorry to hear that. It's unfortunate that your body is not responding to the new liver as well as it should. From my experience, I can tell you the second transplant is not as difficult as the first, mainly because you know what to expect. I will keep you in my prayers
Frank Jones Liver Transplants at Emory University Hospital, Atlanta, GA April 2005 and April 2006. I am proud to be an American. Because an American can eat anything on the face of this earth as long as he has two pieces of bread. - Bill Cosby |
|
DonR
Member Username: Don62
Post Number: 7 Registered: 09-2011
| Posted on Monday, October 03, 2011 - 05:45 pm: |
|
Seann, I've just recently joined and read through this thread. My brother went through a similar situation with the liver he got from me. He got re-listed and got a second one. He's been doing great and should be home soon. So keep the faith and stay strong. You will certainly be in my thoughts and prayers.
Don R. Liver Donor to Brother 07/05/2011 Penn State Hershey Medical Center Hershey PA |
|
S17
Member Username: S17
Post Number: 15 Registered: 09-2011
| Posted on Tuesday, October 04, 2011 - 11:07 am: |
|
Thanks for the support! At the moment I'm in the hospital, but I think I'm supposed to be getting a PICC line so I can do home antibiotics. 3rd livers the charm :P |
Frank J.
Forum Leader Username: Txaggie86
Post Number: 264 Registered: 03-2009
| Posted on Tuesday, October 04, 2011 - 11:26 am: |
|
The 3rd was the charm for me. Best of luck. You are in my prayers.
Frank Jones Liver Transplants at Emory University Hospital, Atlanta, GA April 2005 and April 2006. I am proud to be an American. Because an American can eat anything on the face of this earth as long as he has two pieces of bread. - Bill Cosby |
|
Liver Giver
Forum Leader Username: Beteboop
Post Number: 863 Registered: 10-2007
| Posted on Thursday, October 06, 2011 - 05:22 am: |
|
S17, have you connected with Jordan yet on transplantfriends. He started a forum there for teen transplant patients. He is 18 years old and amazing. I hope you are feeling better
Dawn Forum Leader Living Organ Donation Liver Donor 11/19/07 to brother Anthony Good and bad things happen in life, but what matters, what defines us, is how we handle them |
|
Mariel
Member Username: Mariel
Post Number: 77 Registered: 02-2008
| Posted on Thursday, October 06, 2011 - 05:27 am: |
|
Praying for you buddy! Keep the faith that soon you'll be over this hurdle once and for all.
Mariel, wife of PSCott www.caringbridge.org/visit/scottcarr |
|
Angela
Member Username: Angie2011
Post Number: 33 Registered: 07-2011
| Posted on Thursday, October 06, 2011 - 09:55 pm: |
|
Seann, You will be in my thought and prayers. Hope God will heal you soon. Stay positive, and miracles will happen. May God Bless
Living Liver Donor to Mother in Law 6-2-11 New York Presbyterian Hospital in NYC.. Magnificent Team The good we do today becomes the happiness of tomorrow... Unknown |
|
S17
Member Username: S17
Post Number: 16 Registered: 09-2011
| Posted on Thursday, October 20, 2011 - 02:39 pm: |
|
Almost 4 weeks since I've been readmitted into the hospital, I had a drain placed in my largest abcsess and I'm still on 4 antibiotics, just waiting but I'm doing okay, just wanted to update! |
Angela
Member Username: Angie2011
Post Number: 42 Registered: 07-2011
| Posted on Thursday, October 20, 2011 - 10:19 pm: |
|
May you find comfort in knowing that many of us are thinking about you and we hope good health will be restored to you soon. You are extremely strong, and I admire you for your strength. You will be in my prayers and thoughts. Keep the faith, and God will answer our prayers! God Bless
Living Liver Donor to Mother in Law 6-2-11 New York Presbyterian Hospital in NYC.. Magnificent Team The good we do today becomes the happiness of tomorrow... Unknown |
|
Mariel
Member Username: Mariel
Post Number: 84 Registered: 02-2008
| Posted on Thursday, October 20, 2011 - 10:25 pm: |
|
Do they have to wait for your infection to clear before redoing the transplant? Godspeed, we're all pulling for you!
Mariel, wife of PSCott www.caringbridge.org/visit/scottcarr |
|
papillonbleu
Forum Leader Username: Papillonbleu
Post Number: 2085 Registered: 10-2007
| Posted on Friday, October 21, 2011 - 08:55 am: |
|
I will be sure to keep you in my thoughts and prayers. I hope that your infection can soon be shown the door and quickly kicked out so it can not return. I hope that you may then soon get your third gift of life. May you find new sources of strength and hope to uplift you each day. Many hugs and best of wishes for healing and renewal are being sped your way on the wings of hope.
Bobbiejo Forum Leader-Multivisceral dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004 multivisceral transplant, 6 organs, 10/06/05 University of Miami/Jackson Memorial Hospital
|
|
S17
Member Username: S17
Post Number: 17 Registered: 09-2011
| Posted on Monday, October 31, 2011 - 06:05 pm: |
|
Prayers are comforting :p No they don't have towait because the infection is in the liver itself, Also found out that I had cholangiocarcinoma but I'm still waiting for that liver 3.0!!! Thanks for the support! |
Joe Berry
Forum Leader Username: Joe910
Post Number: 306 Registered: 08-2008
| Posted on Thursday, November 03, 2011 - 08:34 pm: |
|
I am praying for you. PSC and CCA at your age is quite challenging. Keep positive - its not a hill you can't climb.
|
S17
Member Username: S17
Post Number: 18 Registered: 09-2011
| Posted on Thursday, November 24, 2011 - 10:26 am: |
|
Thanks joe. Just had second surgery saturday and found out after i was asleep in OR Instead of icu i was in the recovery room, they could not transplant the liver due to the small tumor they found inside my abdomen. So im back in the hospital recovering from my incision and im getting a drain placed in my lung and abdomen, btw im 6 days post and was wonderjng if ascites in the stomach is normal after? Thanks, seann |
Joe Berry
Forum Leader Username: Joe910
Post Number: 311 Registered: 08-2008
| Posted on Thursday, November 24, 2011 - 10:14 pm: |
|
Yes, ascites in common. It took me over three weeks to lose the ascites. Some may take longer. You are still in my thoughts and prayers.
|
papillonbleu
Forum Leader Username: Papillonbleu
Post Number: 2122 Registered: 10-2007
| Posted on Monday, November 28, 2011 - 02:42 pm: |
|
I will also continue to keep you in my thoughts and prayers. Many hugs and best of wishes.
Bobbiejo Forum Leader-Multivisceral dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004 multivisceral transplant, 6 organs, 10/06/05 University of Miami/Jackson Memorial Hospital
|
|