Pam - I am so sorry! My deepest condolences. The story of your final moments together is so beautiful. You have a special guardian angel watching over you and your family. Sending you lots of hugs!!!...
@mamalama - yes the creatinine is definitely something that is looked at very closely and we do get very anxious when it starts to creep up. Does Mike take Prograf or the genetic Tacrolimus? How...
@ MamaLama - she has her good days and bad days. Her WBC have always been low post transplant. The neutrophils, monocytes, the absolute lymphs, etc (I don't know if these are called the differentials...
Still waiting for this weeks blood test results. I do have another question about labs - do those who are post transplant, find that their WBC's tend to be low? Also, I find that the CBC such as the...
Thank you David and MamaLama for getting back to me. It's not her creatinine level that I am worried so much about - that is ever so slightly elevated. It's more the liver enzymes being on an upward...
Hi David. Did you doctors decrease your prograf dosage to see if that helps your creatinine level but still maintain a trough level that is right for you? My mom is diabetic so that does not help her...
Hi! My mom is 2 years post transplant. Never had an issue with the liver enzymes (ALT, AST & ALK phosphate) - they have always been in the mid normal range. Within the last few weeks, they have all...
Hi. I am sorry to read that the HE is getting worse. It's a good thing that you organize and research for your relocating plan now - it's never too early to get all the wheels in motion. I can not...
Hi! I know Mike has waited a long time for his hernia surgery as have you. However, my opinion would be to delay the surgery a few more weeks until they find out why he's having that pain but most...
@david - isn't "prograf" the name brand? Did your drs need to write a letter to your insurance provider explaining why you need prograf versus the generic (Tacrolimus)?...
For those who are post transplant, I understand there are different generic brands/manufactures of Tacrolimus. Which do you use? Our local pharmacy dispenses the generic by Accord and another...
I agree with themiz - what is your current meld? If your meld is low, even though you are being dual listed, I don't think it would help your chances of getting a liver sooner. However, the higher...
Hi Lostson, I am so happy to hear that your dads appointment went well and he's on the road to a successful recovery! It's not unusual that a liver with cirrhosis has liver cancer. But definitely...
Have you thought about being dual listed?...
Hi Lostson. So happy to hear that your dad is progressing and he is home. However, I am a bit surprised that they let your dad go back to your home state so quickly. I would of imagined that they...
I hope your dad feels better soon!...
Glad to hear that your dad is doing better. Right after my mom had her transplant, she said that the water had a " metallic" taste to it. It was a good few weeks before water tasted normal to her. I...
@tomwinn - either resection or transplant give you a better chance of hopefully having no other HCC reoccurance. As you must of already been told - HCC can also come back in the new transplanted...
@ tomwinn - you asked if you should still have a transplant if the cancer does not come back? There is no way to know if it will come back or not. However, TACE and RFA are a "bridge" to transplant,...
@mamalama-once your tumor hits 2cm, you automatically are given "exception points". The ultimate goal of TACE or RFA is to decrease the tumor and therefore is a "bridge" to transplant. The point I am...
If your AFP went down to 9 and your TACE was successful, then why are you "inactive" on the transplant list?...
Hi Lostson, I am sooo happy that all went well. Love the title of your new thread "post transplant" - those words are such a miracle! Continue to keep us posted. Speedy recovery to your dad :-) -WD...
Hi. My mom was in ICU for less than 2 days and then on the transplant floor for 5 days. In total, she was in the hospital for 7 days. I understand exactly how you are feeling -my belly was in knots...
Hi Lostson, It happened the same way for us too - I got the call while I was at a meeting with my child's teacher - my mom had an offer! Ran out of there as fast as I could. Having my mom dual listed...
That is FANTASTIC news!!! Good luck to your dad and keep us posted when you can :-)...
Hi Lostson, How is your dad doing? WD...
Susan, If you are considering Columbia Presbyterian, why not reach out to them and speak to one of the coordinators or have them put you in contact with the transplant psychiatrist. She/he may be...
Lostson, That is FANTASTIC news!!! Your dad must be extremely happy :-) Did they mention where on the list your dad is? Although this could change day to day depending on people's meld score, it's...
Lostson, Can you call his doctor and explain the situation and tell them how your dad is feeling? Maybe they can advise you if you should take him to the ER or, possibly try to move up your dad's...
@david... You had HCC?...
I wonder if what your doctor was referring to regarding 10-15 years, has anything to do with "extended criteria" livers. Sometimes the "extended criteria" livers may come from an older person, they...
I am NOT looking to get a diagnosis...that's what Doctors are for. Just looking for help with what exactly that sentence means. I feel that having the word 'definite' almost negates the word...
What does this mean: "Without definite washout..." Does it mean there IS washout Or Does it mean there is NOT washout? The word 'definite' is actually confusing me. A simple sentence and it has me...
@bblt... Thank you for clarifying for me . My mom has HCC so I definitely can understand and sympathize. @zoraie... I do get your entire posts... It was just a little difficult for me to piece it...
Hi Zoarie, I am a bit confused... When you were first diagnosed, was it with a single tumor that you had treated with RFA? Then, you were followed up with a Scan (either MRI or ct scan) and then 2...
Hi Zoarie, Did you have a resection when you first had HCC? Just curious if that's how you got a pathology report. Were the doctors concerned bc it was moderately differenciated? This last time, did...
Hi Zoarie, Your hepatologist is 100% correct HCC can definitely come back in the new liver. There are many situations where HCC does reoccur in the new liver. There are also many situations where HCC...
It all depends. You will need to take it day by day. That's the best advice. You should hopefully have most of your questions answered in 2 weeks, at your evaluation appointments. Then, you can set...
Hi Lostson. It may honestly be a year, depending on the situation, it could be less or even more. Each facility has their own protocol. This is something that you will need to address with Iowa....
I "think" that blood type O can only receive from a blood type O donor. But I am not sure about that. I read that patients with O blood type wait longer on average, and patients with B, A & AB blood...
Hi Lostson, Did u hear back from the Iowa coordinator w your dad's schedule? I forgot to ask what blood type is he? The thinness that you see is the loss of muscle mass. Liver disease eats away at...
Congratulations, Mae! Beautiful name....
I agree with TheMiz...your dad will probably be at the top of the list at Iowa...since you mentioned they transplant with meld of 22 and your dad is higher than this ( I couldn't find where u...
That sounds great! 2 days is not bad. My mom had to go for 5 days when we dual listed her...lots of doctor appts, tests, scans, meeting with various members of the transplant team, etc.,. I assume...
Lostson, That's FANTASTIC news !!!...
Hi Lostson. I read on your other thread that your dad has an appt with Iowa? I hope that with your father knowing that, it will motivate him and help him get out of the depression he is feeling....
Hi Lostson, I am sorry to hear that your dad is getting depressed. It is a difficult time for him as many things are going through his mind... Things that you, your mom and your family can't...
That's not an MRI report. What you have is basically a summary note. Did you specifically ask for a finalized copy of your MRI report? Sometimes a radiology facility is not allowed to release the...
Hi. Usually, the report does not mention the actual diagnosis. The report gives the findings within the specific area that is being scanned. For example if it's an abdominal MRI, it will give...
Hi Melissa. Very happy to hear that your hubby is home and your able to begin his "new life". The medication process does become easier and easier as the weeks pass... Especially since, he will be...