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Message |
hopefulgirl
Member
Username: Hopefulgirl
Post Number: 1
Registered: 12-2011
| | Posted on Thursday, December 08, 2011 - 12:53 pm: | 
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Hi, I'm new to the site, really glad I stumbled upon it! I am being evaluated to be a liver donor for my mum. She has primary biliary cirrhosis, end stage. Excited that this is an option but frustrated by the process. It all seems to be taking a long time. My sister is also being worked up. We are going next week for the extensive 2 day evaluation at Lahey clinic. Wish us luck, hoping for a Christmas miracle! |
DonR
Member
Username: Don62
Post Number: 28
Registered: 09-2011
| | Posted on Thursday, December 08, 2011 - 02:23 pm: |
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Welcome, the screening process certainly does drag on, but for good reasons. There are a lot of people here that can give you guidance, advice and support. If you have questions, concerns or need to vent there are many people here willing to help. Good luck to you all.
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
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hopefulgirl
Member
Username: Hopefulgirl
Post Number: 3
Registered: 12-2011
| | Posted on Monday, December 12, 2011 - 11:10 am: |
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Thanks for the reply, can anyone out there give me an idea of how long this will take? My sister and I are both very healthy, no meds, no surgeries, initial labs were acceptable. Ct scan and surgeon discussion this week. Any feedback would be really appreciated! |
DonR
Member
Username: Don62
Post Number: 29
Registered: 09-2011
| | Posted on Monday, December 12, 2011 - 12:17 pm: |
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This is a copy of a post I made to another potential donor who had the same question. It's a pretty accurate time line of how long it took me. I'm sure every center is different and judging by your use of the word "mum" I'm assuming you're somewhere in the UK. This is how it worked in Hershey Pennsylvania.
I donated part of my liver back in July. It started with a questionnaire that I filled out and mailed in. Then a blood test I had done locally to simply type my blood to ensure I was a compatible type to the recipient, my brother. Next was a battery of tests at the medical center. They took 25 vials of blood and tested it for what I am assuming was every disease known to man. Then an abdominal duplex, which was an ultrasound of my major arteries fore to aft to rule out clots, etc. Then an EKG, a chest x-ray, and another different kind of abdominal ultrasound. I had to fast for all that so they let me eat after the second ultrasound. I then had a pulmonary function test because I was a reformed smoker. That was it for the first day.
I got a call from the center that my ferritin level was slightly elevated and that they wanted to test it again when I came in for the next battery of tests. I went back about two weeks later and was examined by a medical doctor and had another blood test for the ferritin level. After that I met with my coordinator who explained the whole procedure with me and took more background info. Then a social worker came in to discuss my support structure at home and financials. My brother's medical insurance covered everything so that wasn't a problem and I was eligible for 60% disability for 3 months. It didn't really seem that I would be disqualified based on my finances, but it wasn't an issue so it wasn't brought up. That was it for that visit.
The next visit was the following week with a psychologist. I had to show that I was doing it under my own volition, that I wasn't being pressured to do it, and that I wasn't going to make any money off of it. Apparently they didn't look at my brother's tax return because he was more broke than me so I definitely wasn't any money on the table. I had two more testing visits one was a CT Scan with dye and then I went back a few weeks later for a biopsy. The biopsy was the only invasive test they gave me. In between this time I had a genetic test to rule out hemochromotosis the ferritin level had them worried, but it turned out negative and my ferritin level went back to normal anyway.
I went back two more times once to meet with the liver doctor and the surgical team, this was when I got the final clearance. The next time I went back was the Friday before the surgery, other than two trips down to bank my own blood. On the Friday appointment I had some blood tests, met with the anesthesia team and signed the consent forms.
To give you a time line. We found out he needed a transplant on the last week of October 2010, but I couldn't offer myself as a donor until he was listed. He was listed on Christmas Eve. I called on 12/27/2010. My first appointment at the medical center was on 2/18/11. I got the final clearance the Friday of Memorial Day weekend. The surgery took place 7/5/2011.
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
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hopefulgirl
Member
Username: Hopefulgirl
Post Number: 4
Registered: 12-2011
| | Posted on Tuesday, December 13, 2011 - 07:22 am: |
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Thanks for the information. My mum was listed 2 weeks ago, we were already in touch with the live donor team so we had our labs drawn then and we were both compatible with no factor 5 or 2 issues. The first visit seems like it will be meeting with the surgeon and the advocate a ct scan and then a large battery of blood tests. I am thinking that based on that initial eval one of us will be called up for more tests. My mums liver MD who is involved with the transplant team told her that if all goes smoothly with the testing that the transplant could possibly be at the end of January. I really hope it moves that quickly as mum is getting sicker and sicker and at some point will not be a canidate for a live donor and cadaver donors are so hard to come by. Thanks so much for the reply back, I will report back what we find out on Friday. By the way how are you feeling? and how is your brother doing? Be well |
Liver Giver
Forum Leader
Username: Beteboop
Post Number: 872
Registered: 10-2007
| | Posted on Tuesday, December 13, 2011 - 06:23 pm: |
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Hi Hopefulgirl.
Lahey was my transplant center as well. Great team! Have you met Denise yet? Dr Pomfret?
You are in great hands there. The process moves along rather quickly but waiting for the results from the CT scan seem like waiting forever.
Keep in touch and let us know how things are moving along
Dawn
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 |
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DonR
Member
Username: Don62
Post Number: 30
Registered: 09-2011
| | Posted on Wednesday, December 14, 2011 - 07:36 am: |
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Some of our delay was that my brother's wife is a teacher and he wanted to wait until she was going to be off to help him out. It worked for me too because I needed to bank time off at work as I used a few days during the screening process. His numbers were stable and he didn't seem too sick. I would have to assume that the center would have pushed it faster if his situation were more dire.
My brother developed a blood clot in my liver late in week 4 post op and was retransplanted with a cadaver's liver late in week 6 post op. He had a rough road but made it and came home about a month or two ago. I am back to work at full duty. This was first time since Penn State Hershey started doing live livers that they had to retransplant as it's pretty rare. We shared a very teary-eyed Thanksgiving Dinner together and the whole family will be together on Christmas so I'm sure that'll be even more teary-eyed. Thanks for asking.
Good luck on Friday, oddly enough I have a six month check up in Hershey Friday too. Definitely keep in touch and don't hesitate to contact me if I can help in any way.
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
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hopefulgirl
Member
Username: Hopefulgirl
Post Number: 5
Registered: 12-2011
| | Posted on Wednesday, December 14, 2011 - 11:31 am: |
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Hi Liver Giver, nice to hear from someone familiar with Lahey. I have spoke with Denise several times she is so easy to talk to and very impressive. I will meet Dr Pomfret tomorrow which I am really looking forward to. My mums team has been amazing so I feel very confident with the program it seems like a tightly run ship! How was your experience,how long ago was your resection? Denise warned me that the ct scan results were the thing that took the longest but she did suggest that the end of January was not an unrealistic goal for a surgery date . Thanks for chiming in I look forward to hearing form you.
DonR I'm sure christmas will be a joyful time. Good luck at your 6 month check-up. |
Liver Giver
Forum Leader
Username: Beteboop
Post Number: 873
Registered: 10-2007
| | Posted on Wednesday, December 14, 2011 - 03:34 pm: |
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Hi Hopefulgirl,
My experience with Lahey was the BEST! Dr Pomfret is amazing and when you look into her beautiful blue eyes you know you are back from surgery...lol..
My resection was November 19, 2007. My family stayed at the suites just around the corner which did provide a shuttle service if needed. In fact, it was Thanksgiving week and my family had dinner in the private dining room at the suites.
It is a tight run ship and everyone is awesome. The nurses on 6central and 6 west are incredible. Denise is an absolute peach
Let me know how you make out with Dr Pomfret. Oh, have you met Maria? She was an angel to my brother, he used to half joking say he was going to marry her....lol...
Do you live in MA? Let me know if there is anything I can do to help or if you would like to get together to chat about things.
Good luck tomorrow. I am praying for you
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 |
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hopefulgirl
Member
Username: Hopefulgirl
Post Number: 6
Registered: 12-2011
| | Posted on Friday, December 23, 2011 - 05:57 am: |
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Hi There! things are moving along well.My Ct scan showed I have a perfectly resectable liver! yeah, Liver biopsy the first week of January, this is requirement because mum has autoimmune liver disease. Still shooting for the last week of January for the transplant. Loved Dr Pomfret and feel really good about the plan so far. Needless to say we feel very blessed this Christmas. Happy Christmas to everyone and wishing everyone a healthy new year! |
Liver Giver
Forum Leader
Username: Beteboop
Post Number: 874
Registered: 10-2007
| | Posted on Friday, December 23, 2011 - 10:17 pm: |
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lol.. at first I thought you said you have a "perfectly respectable liver" I thought hmmm, how odd... then I read it again.... reSECTable makes far more sense.... silly me.
I was fortunate that I never had to have a liver biopsy but I would imagine they make it as easy and quick as possible. I will be watching for your post about how that all works out.
It is a special time of year, Christmas, and feeling blessed is a wonderful feeling. Stay hopeful, faithful and positive. The road isn't always smooth but you are on it and we are here to help you as much as possible through your journey.
Merry Christmas!
Dawn
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 |
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hopefulgirl
Member
Username: Hopefulgirl
Post Number: 7
Registered: 12-2011
| | Posted on Saturday, December 24, 2011 - 07:19 am: |
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Hi Dawn, I would like to think my liver is respectable as well! that's so funny!
The biopsy is a protocol because I am a first generation relation to my mum whos liver disease is caused by an auto immune disorder. They have to make sure I don't have it too. My labs and ultra sound did not indicate that I have it so I'm feeling ok with it and it's just because they have a strict protocol. I'm a nurse and have seen a biopsy its pretty simple, just another step that takes time! Where in Mass do you live? I'm in Brewster on the Cape.
Maybe we can touch base after the holidays. Merry Merry! |
Liver Giver
Forum Leader
Username: Beteboop
Post Number: 876
Registered: 10-2007
| | Posted on Saturday, December 24, 2011 - 08:12 am: |
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I'm glad to hear you "know what's coming" so to speak. Also happy that you do not have any autoimmune issues.
I live in RI about an hour from Falmouth. Would definitely love to touch base after we end 2011
Have a great holiday!
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 |
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DonR
Member
Username: Don62
Post Number: 32
Registered: 09-2011
| | Posted on Monday, December 26, 2011 - 07:16 am: |
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Great to hear that all is progressing well. Hershey does a biopsy with all live liver transplants; it's the final phase of the screening. It wasn't too painful and my usual "luck" hit me and they had to stick me twice. The local burned a little on the way down and then there was a final "kick" in the side. It was numb almost immediately though. Right after the doc took the sample I had a bit off pain shoot up to my right shoulder and neck. I don't think it would have been as bad if they warned me about it. I panicked a little and calmed when they told me it was normal to hurt there. It was a little sore that night and I was back to normal the next day.
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
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kimco
Member
Username: Ckra1990
Post Number: 1
Registered: 12-2011
| | Posted on Friday, December 30, 2011 - 10:16 pm: |
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Hi, I'm new here and would love some advice. My brother in law has been sick since August. We finally got concrete info today that he is indeed in End stage liver failure and has a MELD score of 33. From what we understand, he isn't eligible to be on the transplant list until February (6 months sober) My husband wants to be a living donor to help save his brother. I have many questions but my first one is: does my husband have to wait until his brother is officially listed to start the testing to see if he is a match or can he start that now? We are really afraid that he may no make it until February or much past that and so would hope that if my husband is a match that it could all happen as soon as possible once he is listed. Any help or advice would be greatly appreciated. Thank you! |
DonR
Member
Username: Don62
Post Number: 33
Registered: 09-2011
| | Posted on Saturday, December 31, 2011 - 09:04 am: |
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I don't know about other centers, but Hershey Medical Center required my brother to be listed before I could offer myself as a donor. My brother originally went into liver failure, MELD in the low 30's, in early 2007. He quit drinking and drastically changed his diet and spent a significant amount of time in the hospital. He was misdiagnosed at our local hospital and signed himself out and went to Hershey. He was told there that he may not survive. Hershey is 3 hours away from us so I don't know the particulars of his original hospital stay. If transplant was on the table then, and I'm sure it had to have been, nobody talked to me about live donation. He got out of the hospital and it started to heal. It wasn't until the fall 2010 when his MELD started to creep up again that transplant and live donation discussions started. Quitting booze wasn't an issue because he had been alcohol free for 4 1/2 years by that point. If you or your husband have any other questions feel free to contact me either on the forums or via private message.
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
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hopefulgirl
Member
Username: Hopefulgirl
Post Number: 8
Registered: 12-2011
| | Posted on Saturday, December 31, 2011 - 12:50 pm: |
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Lahey required my mum to be on the list before the donor eval started, but it's not to early to bring up the discussion with his physicians now so they know what your intentions are. If your brother inlaw has a TIPs procedure, he would never be a canidate for a live donor transplant. A TIPs is something that many MDs suggest to reduce the portal hypertension which causes variceal bleeding. There is a point where the recipient is too sick for a partial liver transplant and they need a whole cadaver liver. It is great you and your husband a there to support his brother. This site has been very helpful in my journey so I hope it will offer you the same help and support.
Now for a new question from me, did anyone here have trouble with the crossmatch. I am a bit frustrated with the donor team, they forgot the crossmatch aspect of my work-up! If I understand correctly this may negate me as a donor for my mum which is very frustrating as we have spent so much time already on my eval and now we might have to start from scratch with my sister. Oh well I'll keep you posted. Happy New year everyone!
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DonR
Member
Username: Don62
Post Number: 34
Registered: 09-2011
| | Posted on Saturday, December 31, 2011 - 05:03 pm: |
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Are you talking the cross-match blood test to make sure you're a compatible blood type? If so that was the first step at Hershey. They sent me a prescription and I had it done at a local lab in my town and they sent the results to the transplant team. If you're not a compatible blood type it would negate you, but I think that is pretty unlikely between mother and daughter. I understand your frustration completely. The eval, the surgery and the recovery basically consumed the year 2011 for me. It still hasn't ended because I keep getting an abscess on my scar. It may be an internal suture that didn't dissolve properly. which would be one of those quirky, rare, stupid things that seem to make up my luck. I have to talk with my coordinator on Monday and it'll probably cost me a day off and a trip to Hershey on Friday. I also know how scary and upsetting it is when you are faced with the potential of not being able to donate. I was there with the ferritn level in my blood. They had to do a genetic test to rule out Hemochromatosis; which would have bounced me as a donor. I barely slept all that week waiting for the results. It worked out in the end though so think positive. As for the TIPs thing I guess my brother never had it. I know he had a clot in the portal vein that the surgeon had to bypass; which was why he was in surgery for 20 hrs. Good luck, I'll be thinking about you and hoping everything works out.
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
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Liver Giver
Forum Leader
Username: Beteboop
Post Number: 877
Registered: 10-2007
| | Posted on Saturday, December 31, 2011 - 11:20 pm: |
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I'm surprised about the cross-match as well especially with all the blood that is taken in the testing phase. Don't give up hope if you aren't a match then be thankful you have a sister who may be the "one". I was the only matching blood type to my brother out of our family. Well my Dad wasn't tested due to his age and other health issues. I know that is difficult especially as your mom is so ill but keep your faith.. I am praying for you all.
Hi Kimco! Sorry to hear about your brother-in-law. I believe that it is standard for a patient to be listed before a living donor is explored and not all patients are candidates for the living donor option.
Sobriety is HUGE with all transplant centers and I do believe that it should be so. There are so many people who are waiting for livers drinking alcohol to a newly transplanted liver would not be good and could be fatal. The centers need to be as certain as possible that the recipient is going to be able to handle their responsibility post transplant.
Remember that MELD scores go up and down. Your brother-in-law may be a 33 at his last appointment but that can go down.
I hope to hear more from you and will be praying for your family.
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 |
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kimco
Member
Username: Ckra1990
Post Number: 2
Registered: 12-2011
| | Posted on Sunday, January 01, 2012 - 10:28 pm: |
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Thank you everyone for the information and support. I do have a follow up question. My BIL's doctors were talking about the TIPS procedure just today and I saw that hopefulgirl mentioned that if he has the TIPS procedure then he would never be eligible for a live donor transplant. Why is that? I don't feel he is getting all of the needed info from his doctors and I want to make sure he doesn't do something short term that would limit his donor options going forward. Thank you! |
DonR
Member
Username: Don62
Post Number: 35
Registered: 09-2011
| | Posted on Monday, January 02, 2012 - 10:16 am: |
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Unfortunately, I don't know the answer to that one. I did some reading on TIPs, but nothing substantial. My brother had a clot in his portal vein and had a lot of problems with stomach and esophagial varices prior to transplant. He was also dealing with ammonia problems which made him confused, disoriented and off balance. He may very well have been a candidate for TIPs, and I don't know if it was discussed. I can tell you this though, due to his prolonged liver disease, he developed a hypercoagulating disorder. He developed a clot almost immediately post-op in his leg. Then in week 2 post-op, after I had gone home, he developed a clot in an auxiliary vein in my liver. The liver continued to grow, but in week 4 about 1/3 of the new (half) liver stopped working. He was re-listed at the end of week 4 and received a new, whole liver, at the end of week 6. He's alive and well now, but he had a huge up hill battle. When he was re-listed he was intubated, on constant dialysis, he had turned yellow again; these factors put his MELD off the charts. This coupled with being a failed live recipient put him at status one on the list.
That's the caveat in the story. If he had not been a failed live recipient he would never had made status one, even if he got as sick as he was at the time. At least that's what the surgeon told me. Could it have been an attempt to make me feel better? Sure. I am still very proud of what I did. I once jokingly referred to myself as the interim donor and my brother blew up on me. He told me to never down grade what I did and that he never would have made number one on the list without me and that my liver kept him alive long enough to get the new, whole one.
I'm simply telling you this to pass on information. My best advice to you and your family is to trust the doctors as they know what they're doing, I'm a cop not a doctor; I can only tell you my experiences, and I'll never hold anything back or sugar coat. Before my brother and I, Hershey had a 100% success rate for live donors and recipients, we put our faith in them, had some pretty big bumps in the road and came out on the other side. Maybe TIPs would take a live donation off the table, but it also may eliminate the need for transplant or at least put it off for a long time. Good luck, you and your family will be in my thoughts and prayers.
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
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hopefulgirl
Member
Username: Hopefulgirl
Post Number: 9
Registered: 12-2011
| | Posted on Monday, January 02, 2012 - 05:43 pm: |
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Hi there, from what I understand the TIPs basically does a bypass on the portal vein, a shunt is placed to aleviate the pressure on the liver. My mums surgeon said that if she had a tips she had had a tips in the past she would not be eligible for transplantation. He led us to believe that it would permanently change the vasculature to the liver. She did have a clot in her portal vein and maybe that complicated things. I am an RN and work in a really good hospital, that being said not many of our doctors knew anything about liver transplantation, especially live donor. I would continue to know that you bil docs are doing the best of what they know for him but I would ask to be referred to hospital with a transplant program. It's a fine balance, having faith in the team and advocating for care. Keep the faith.
As for my crossmatch issue. The crossmatch is different from the blood typing. Apparently because during childbirth my mum was exposed to my blood she possibly has made antibodies against it. The crossmatch mixes our blood to see if her blood will attack mine. If it does she has been sensitized to me and will reject my liver! kind of a big step to miss
Hopeful that it will be ok. Hoping the test will be this week, complicated because we both have to be present at the same time at Lahey 2 hrs away. Mum is so unwell that a 2 hr car ride each way for a blood test is really tough. Keeping our fingers crossed! Thanks for listening! |
kimco
Member
Username: Ckra1990
Post Number: 3
Registered: 12-2011
| | Posted on Monday, January 02, 2012 - 07:16 pm: |
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Thank you so much for your responses Don and hopefulgirl. I really appreciate your time and thoughtfulness. My bil finally has an appointment with a specialist on 1-13 and we hope to then hear more about what comes next. Unfortunately, he recently lost his private insurance coverage and is being treated at the County hospital which I fear has slowed down his access to specialists. I'm anxious to find out if this also effects him being seen by a transplant team at UCLA or USC which are the two choices by him. I am praying that one of these transplant teams will take him on regardless of his lack of private insurance. Talked with him today and his amonia levels were down so that he was able to communicate clearly which was good. I think he has had every complication of ESLD since getting sick in August and has been in the hospital about 10 times in that short amount of time. Ongoing ascitis that has to be drained about every week, esophagial varices that had to be banded, high amonia levels leaving him not even knowing his name, low sodium levels, kidney problems, bacterial perontonitis...It has been a very scary 4 months for sure and it looks like this is only the beginning as this seems to be a very long road for many. Hopefulgirl: best of luck on your cross matching. I will say a prayer for you. |
kimco
Member
Username: Ckra1990
Post Number: 4
Registered: 12-2011
| | Posted on Monday, January 02, 2012 - 07:16 pm: |
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Thank you so much for your responses Don and hopefulgirl. I really appreciate your time and thoughtfulness. My bil finally has an appointment with a specialist on 1-13 and we hope to then hear more about what comes next. Unfortunately, he recently lost his private insurance coverage and is being treated at the County hospital which I fear has slowed down his access to specialists. I'm anxious to find out if this also effects him being seen by a transplant team at UCLA or USC which are the two choices by him. I am praying that one of these transplant teams will take him on regardless of his lack of private insurance. Talked with him today and his amonia levels were down so that he was able to communicate clearly which was good. I think he has had every complication of ESLD since getting sick in August and has been in the hospital about 10 times in that short amount of time. Ongoing ascitis that has to be drained about every week, esophagial varices that had to be banded, high amonia levels leaving him not even knowing his name, low sodium levels, kidney problems, bacterial perontonitis...It has been a very scary 4 months for sure and it looks like this is only the beginning as this seems to be a very long road for many. Hopefulgirl: best of luck on your cross matching. I will say a prayer for you. |
hopefulgirl
Member
Username: Hopefulgirl
Post Number: 10
Registered: 12-2011
| | Posted on Monday, January 09, 2012 - 07:30 am: |
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Just checking in. Medical eval last week went well, psych, social work, nutrition, pharmacy, GI, chest xray, more labs and EKG. Back to Lahey tomorrow for a liver biopsy and to meet a cardiologist for clearance, I have an irregular heart beat and they just want to be sure it is ok. If everything checks out I will be presented to the team next tuesday and hopefully by Wednesday we will know! Mum is doing well at the moment, she is excited! Keeping all our fingers crossed! |
DonR
Member
Username: Don62
Post Number: 36
Registered: 09-2011
| | Posted on Monday, January 09, 2012 - 08:11 pm: |
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Good to hear that everything is going well. Good Luck!
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
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Nichole
Member
Username: Nichole8
Post Number: 10
Registered: 08-2011
| | Posted on Wednesday, January 11, 2012 - 05:31 pm: |
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Hi fellow donors i have a ? for you all.... I donated part of my liver about a month ago and have a follow up appointment on monday. The last 2 days i've had some cramping on my right side and it seems to worsen with deep breaths and certain positions. Has anyone else experienced this pain? i know you aren't suppose to feel your liver but this cramping makes me think i do and that something may be wrong. if anyone has thoughts on this it would be greatly appreciated.
Thanks |
Angela
Member
Username: Angie2011
Post Number: 44
Registered: 07-2011
| | Posted on Wednesday, January 11, 2012 - 09:29 pm: |
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Hi Nichole,
First I would like to express my most sincere admiration for your unselfish act. May god bless you and your mom and I wish you both a speedy recovery.
In reference to the cramping, I had the same issue a few weeks after the surgery. The pain was horrible! I think it was worse than giving birth... The doctor mentioned to me that my ribs were moved during the surgery (I donated my right lobe) and because the ribs were trying to get back to its normal position, it was causing the cramping. It was much worse when I used to take deep breath because you need to compress and expand your ribs. I used to take 2 Tylenol before going to bed (recommended by the doc), put a heating pad on the right side, and lots of pillows. If you have gas, it's even worse. Try to eat every 3 hours, and try to walk straight (I know is not easy). Don't worry about the cramping and the pain, it's all normal and it should not last more than a week.
The first 2 months are the most challenging but everything will get easier. Best of luck at your next follow and I wish both of you all the best.
God bless and I will be praying for a speedy recovery!
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 |
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Nichole
Member
Username: Nichole8
Post Number: 11
Registered: 08-2011
| | Posted on Thursday, January 12, 2012 - 12:43 pm: |
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Thank you so much for the info. It's more of the fear of the unknown that is so scary to me. Everytime i have a mysterious pain or cramp i think the worst i know i'm a little crazy but this is all so new to me, i've been quite fortunate and never had any medical issues prior to this so it's safe to say i'm a bit of a hypochondriac. I just wanted to hear that it's normal and part of the healing process. I did feel like i was dying last night but i'm much better today. I'm feel so blessed to have done this and am extremely happy to have support like this from all of you.
Thanks again and God Bless |
DonR
Member
Username: Don62
Post Number: 37
Registered: 09-2011
| | Posted on Thursday, January 12, 2012 - 07:52 pm: |
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I had some cramping too. You're right, you don't feel your liver, but the liver doc told me there is a sack around the liver that has a ton of nerve endings. He also said this is why the donor usually has more pain than the recipient. I'm used to that as my brother always did cause me pain lol! It'll get better. Just take it real easy and avoid the ever threatening hernia. It is great to hear from you as well. Keep us posted.
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
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kimco
Member
Username: Ckra1990
Post Number: 5
Registered: 12-2011
| | Posted on Thursday, January 19, 2012 - 05:36 pm: |
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I have good news to share. My brother in law finally got transferred from the county hospital to USC in care of the transplant team. It took a lot to finally get him there but so thankful he is safely in their hands as of last night. They have already done more for him today then I think was done the past 5 months! They are currently evaluating him for transplant. Hoping to hear this week if he can receive a live donor transplant. Then we will move to getting my husband evaluated as the donor. Anyone here in So Cal and received/donated at USC? |
