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Message |
JDB
Member
Username: Jdb
Post Number: 9
Registered: 01-2010
| | Posted on Monday, October 03, 2011 - 11:52 pm: | 
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Hi,
I donated the left lobe of my liver in July 2009 to my nephew and I still feel I haven't fully recovered, even though my blood tests for liver function come back normal. I had afib before the surgery but it got much worse after. My main problem is being tired all the time, or most of the time. Also notice that my eyes are often bloodshot. Which makes me wonder if my liver might not have fully regenerated. Does anyone here know if that sometimes happens? I need to get an ultrasound but they're expensive and my insurance doesn't cover it. Any feedback would be most helpful. My nephew died of a hemorrhage a few days after the transplant, so my recovery has been both physically and emotionally difficult.
Thanks so much.
John |
Heather
Forum Leader
Username: Heather
Post Number: 3332
Registered: 05-2003
| | Posted on Tuesday, October 04, 2011 - 07:34 am: |
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Hi John. Welcome. I am sorry you still are not feeling recovered. Have you had a CBC to see if something else is going on? perhaps this has nothing to do with your liver. I can't say.I am a kidney donor. I hope things turn around for you. There are a few iiver donors on here who hopefully will see your post and be able to help you out.
I am also so sorry for the loss of your nehpew. That was one thing I wondered how in the world I would deal with if it happened to my dad.
hang in there.
Heather
Heather
Forum Leader - Living Organ Donation
Heather's Blog
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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DonR
Member
Username: Don62
Post Number: 9
Registered: 09-2011
| | Posted on Tuesday, October 04, 2011 - 02:37 pm: |
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John,
I donated my right lobe to my brother this past July. I haven't had any negative side effects yet. I had an issue with the surgical staples and my bowel function was slow to start due to pain killers but it corrected itself pretty quick. I had an ultrasound at 2 weeks post op, and CT's with dye at weeks 4 &12 which showed my liver had regenerated. I haven't had an issue with fatigue, I've actually had more energy after 3 months of rest. It probably won't last as I'm phasing right back into 60 hour weeks. The transplant center told me that 3 months post op I could return to doing anything I did before. I still have some pain at the incision site, but my recovery there was slowed due to the staple allergy/infection. I was eating and drinking (obviously non-alcoholic beverages) normally by week 3 or 4. Have you had a check up with your regular doc recently? I tend to agree with Heather it may be something to do with something other than the transplant. I am also very sorry to hear about your nephew. My brother developed a blood clot and was re-transplanted 7 weeks after the original surgery. We haven't lost him yet, but it was close several times and he's still in the hospital; although, it looks like he's probably out of the woods. I kind of know what you went through as I tried to mentally prepare myself for the worst when he went into full blown liver failure during post op week 4 and 5. He was intubated, sedated and on constant dialysis.
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: 861
Registered: 10-2007
| | Posted on Thursday, October 06, 2011 - 05:13 am: |
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Hi John,
I am sorry that your nephew passed away. My brother also passed 9 months post transplant. It is a most difficult journey.
I pretty much had a text book recovery except for a bout of constipation (which I'm finding is common). The fatigue I experienced was during the regeneration time and I took iron supplements per the surgeons orders.
Were you followed post resection by your surgeon? Have you had any ct scans after the surgery? The centers I know do both. They told me my liver was pretty much completely regenerated 6 weeks post. It is now 83% of the original volume but by know means not whole.
Unfortunately, not having insurance adds to the stress but if need be have them order the ct scan and then pay a little bit at a time on it.
I shall be praying for you. Keep in touch
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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JDB
Member
Username: Jdb
Post Number: 10
Registered: 01-2010
| | Posted on Thursday, October 06, 2011 - 10:20 am: |
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Thanks Heather, Don, and Dawn,
I had an ultrasound at six weeks post-op and the radiologist said, "The left lobe of your liver is gone. There's nothing there." Which made me think I was just off to a slow start, perhaps because of my age, 53 at the time. Now I'm thinking the regeneration process hasn't been normal for me. But I'll get an ultrasound and/or CT scan and find out for sure.
I'm so sorry about your brother, Dawn. That's such a powerful relationship and such a huge loss. Do you think having only 83% of original volume affects your energy level? Or your health in any other way.
Sounds like your recovery has been pretty smooth, Don, though not so for your brother. I do hope he gets through all this. I can't imagine going through two transplants. I had my transplant in Kyoto, where my nephew was living and teaching English. I had four weeks of follow up there but no contact with the hospital since returning to the states, except a couple emails.
Heather, I have had a CBC, though not real recently. My blood work was always OK. I have afib and that causes fatigue—almost had a heart attack right after my surgery—but I just have a feeling my liver's not right, or not fully regenerated.
Thanks so much for your support and good wishes and helpful feedback. I'll let you know what I find out.
Stay well.
John |
Liver Giver
Forum Leader
Username: Beteboop
Post Number: 865
Registered: 10-2007
| | Posted on Thursday, October 06, 2011 - 10:43 am: |
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John,
Your left lobe is gone because that is the lobe you donated. I donated my right lobe so now I have a full volume left lobe liver. Once the resection is performed the remaining lobe is what regenerates to volume. We can lever be living liver donors again because we now have technically a big one sided liver...lol... sounds a bit silly but true.
As for effecting my energy level or health, absolutely not. I started running and ran the Boston Marathon last year in memory of my brother. I was recently accepted to the American Liver Foundations Run for Research team and will be running that same 26.2 miles again in April 2012! I am hoping for a better time but finishing in 6hours 6minutes is still finishing and sooo worth the journey.
Your blood tests should be an indicator if your liver is functioning properly or at least if something is amiss. Definitely have the ct scan.
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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JDB
Member
Username: Jdb
Post Number: 11
Registered: 01-2010
| | Posted on Thursday, October 06, 2011 - 12:10 pm: |
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Thanks, Dawn. I didn't realize that the lobe that wasn't taken would do all the regenerating. I thought the left lobe would grow back. I'm still curious how much of a liver I have now. Just wish I didn't have to pay an arm and a leg to find out.
Congrats on running the Boston marathon! That's a huge feat even for someone who hasn't been what you've been through. I'm up to 3 miles a couple times a week and that feels good. Just wish I wasn't so fatigued so much of the time. I'm going to find a naturopath here in Portland and see if that will help.
Thanks,
John |
DonR
Member
Username: Don62
Post Number: 12
Registered: 09-2011
| | Posted on Thursday, October 06, 2011 - 01:01 pm: |
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I'm a little surprised at only having four weeks of follow up. After I got out of the hospital I had an abdominal duplex at 2 weeks, CT at four weeks, CT at three months (all w/ clinic appts w/ tx surgeon and blood work, I'm scheduled for a 6 month clinic appt. I think they said a CT too, then a one year lab and clinic appt next July. Then I have to go back every July after that.
They also told me the same thing that Dawn said about having one big liver lobe and that I would technically be considered as having a half liver. The Friday prior to the surgery my wife asked the surgeon if there was a chance that my liver would not regenerate. She answered that it only happens when the donor is not left with enough liver mass immediately post op. I know that calculating liver volume was a big part of the screening.
Dawn, Awesome job on the marathon. Running is starting to become my new thing. I quit smoking last December and have absolutely no urge to start again. I am almost back to my Academy time from about 15 years ago, albeit on a treadmill. My knees can't handle the pounding on the road, especially our roads.
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
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JDB
Member
Username: Jdb
Post Number: 12
Registered: 01-2010
| | Posted on Thursday, October 06, 2011 - 06:20 pm: |
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Hi Don,
I had the surgery in Kyoto. Follow up care there was excellent but once back in the states I was kind of on my own. I did have blood work done several times in the first year after but no abdominal duplex (what is that?) and no CTs. Hope to get back on track with a naturopath here. Have lost a lot of faith in conventional doctors due to a botched flutter ablation to correct my atrial flutter but which ended up giving me atrial fibrillation instead.
Congrats on quitting smoking! That's one the best things you can do for yourself and not easy. I quit 17 years ago, thank goodness.
Take care,
John |
DonR
Member
Username: Don62
Post Number: 13
Registered: 09-2011
| | Posted on Thursday, October 06, 2011 - 07:24 pm: |
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The abdominal Duplex was an ultrasound where they also measured the pressure running through the arteries and veins, at least that's how I remember them explaining it to me. I had one on my neck and down my right arm too because they wanted to rule out a blood clot as my right hand had numbness. It turned out to be a positional thing due to how they had my arm positioned during the surgery. I was in for almost 11 hours due to my liver being high up under my ribs and an extra vein that they didn't see during the screening process.
I always try to go the homeopathic route too, just remember that all those supplements are processed by the liver though. My homeopathic chiropractor actually took me off supplements for a month prior to the surgery. She tested me for what I needed and has just been kind of keeping track until the four month mark or so. She wanted me to completely heal before she gave me anything.
As for the smoking thing, I have become a total smoking snob, the smell drives me crazy. I was never very successful at quitting until now. Of course no booze helped that too.
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
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