WE HAVE A LIVER!

Hello everyone,

Well, I have good news and bad news to report.  Harvey’s liver is performing flawlessly.  He suffered a minor hernia a couple of weeks ago and seems to be feeling better.  The transplant team sent him for CT scans of his abdomen and pelvic area just to be sure.

We got the results of the CT scans and they were not what we expected.  The scans revealed that Harvey has an Aortic Aneurysm (4.1 cm) and nodules in his lungs.  The director referred him to a vascular surgeon as well as a pulmonary specialist.

This has really gotten Harvey down.  Just when he starts feeling better, more bad news.  He is frustrated and so am I.  I guess this was a blessing in disguise.  Had they not done the CT scans for a hernia, they wouldn’t have found the other problems. 

We have an appointment on 4/16 to find out the results of the thyroid biopsy.  I’ll keep you posted on how things progress.

I hope everyone is keeping a chin up.  I can’t seem to get off the rollercoaster either.

Penny

Thanks Mer,

I’m not so concerned about the nodules on his lungs.  He had a recurring pleural effusion (collapsed lung).  Each time the fluid was removed and his lung reinflated, he would cough up large blood clots.  This is normal.  I imagine the nodules are indeed scars.

My concern is for the aortic aneurysm.  If it bursts, it could take him out in moments.  The transplant director said that a vascular surgeon wouldn’t do surgery unless the aneurysm is 5 cm or more.  Looks like I have more research to do. . . .

Anyway, I’m hanging tough.  I’ve been worried about you.  I hope things improve for you and your husband.  You’re in my prayers.  Take care.

Penny

 Thank you so much for all your post during your hubbys transplant. I am 24 years old and am on the waiting list for a new liver :P due to AIH I am extremely terrified of this whole ordeal, and reading what you went through has given me a better understanding of what is to come, which makes things less scarry Im sure i can get through this, im just worried about my family and how im going to be such a horrible burden. Was the pain really bad for Harvey? I also want to give my condolences to you about your bro-in-law, but he is in Heaven in a wonderful place there, my daughter lives there and i know she is happy :P No suffering. Anyway just wanted to say thanks for sharing your journey :P

Thanks everyone.

I’ve been really busy at work.  Our director is coming in for a tailgate meeting with my team on Thursday.  I have to take Harvey in for a CT scan of the chest before the pulmonary doctor will schedule an appointment.  He goes for blood work at the lab on Thursday, but says he can handle this on his own.  He goes to the vascular surgeon on April 30^th.

I’ve done some research on the Abdominal Aortic Aneurysm (AAA) and I’m not as concerned as I once was.  They are now repairing aortic aneurysms much the same way that they place stents in the human heart.  They go in through the groin with the graft and place it in the middle of the aneurysm.  They used to do major surgery that required a hospital stay of up to 10 days!

I just want a break.  So does Harvey.  I told him to be patient.  Tomorrow will be his 3 month transplant anniversary.  He is still only 148 lbs, but he seems to be getting stronger.  He is now walking more than 3 miles per day!  He lifts 5 lb weights as well.  He’ll work his way back to health.

I’ve been reading your posts on the MELD scores and it makes me angry.  I met a man and his wife in clinic the other day and she was frustrated because her husband got a transplant and she didn’t think he was sick.  The only symptoms he experienced were fatigue and itching.  I told him he really dodged a bullet.  He seemed grateful.  She said they almost turned down the liver.  Her daughter was about to give birth to their first grandchild and the transplant would interfere with their travel plans to Jersey.  In her words, “I figure they had a type B liver laying around and decided to transplant it into my husband.”   Needless to say, I was furious and had to leave the conversation.

I hope everyone is calculating their own MELD scores using copies of the blood tests.  Here is the weblink in case you’ve misplaced it . . .   http://www.unos.org/resources/MeldPeldCalculator.asp?index=98

Butterflythree, we are just trying to stay positive.  Without the transplant, Harvey would not be alive today.  We have to remind ourselves of our blessings. 

BrokenMommy, you asked about Harvey’s pain.  The pain he suffered was internal.  They cut the nerves of the abdomen during surgery, so he didn’t have pain at the site of the incision.  He was prescribed pain medication, but never took it until he had the hernia.

Connie, I’m certain you know exactly what Harvey is going through.  You are a real trooper yourself!

Take care.  You are always in my thoughts and prayers. 

Penny

Penney

Please tell me how that Man received a liver with very little symptoms.  Did I miss something/  I read your post twice.  I know I'm off in some other world these days.  I'm really having a hard time concentrating.  I think its just over load BUT I'm still mad.  We battle that darn MELD score thing every day.  We now go to the Dr. for blood work every week.  Praying that Jerry won't have a stomach bleed again!!!  Sorry I just had to vent.  I think Harvey will be OK.  I just know it.  You two have been through so much to get to where you are now.  This just has to be a small bump in the road.  Hang  in there.

JoAnn

JoAnn,

You didn’t miss a thing.  The man only suffered fatigue and itching.  He had Primary Sclerosing Cholangitis (PSC) just like my husband did.  As you know, my husband was turned down at Shand’s Hospital.  He would have died had it not been for Florida Hospital.

This is what I’ve been trying to tell everyone.  This is a new liver program and they must demonstrate their ability to perform in order to succeed.  location, location, location.  Livers are allocated to the sickest patient in the local area first, then to regional, then to national.  It’s a ripple effect. 

Compatibility, patient health, distance, and a center’s ability to actually perform the surgery are taken into account.  60% of livers are turned down for various reasons.  A center that is trying to make a mark generally stand on the ready and are very eager to get the job done.  For this reason, the sickest patient is not always the one who gets the liver. 

You are in my thoughts.  I know how very frustrated you are.  Hang in there an don’t give up hope.

Penny

Connie,

With that being the case, you need to be very careful about putting on additional weight.  It will just make another hip replacement harder to get over. 

Lighten up!     

Penny

JoAnn,

You are mentally and emotionally overwhelmed.  Yes, I know exactly what you are going through.  Don’t apologize for getting things off your chest.  If you don’t, you’re head may exploded (figuratively of course).  It is an extremely heavy burden to carry and sometimes you’ll feel helpless and alone.  This forum proved invaluable to me when I was in your position.  It is a place where people understand what you are going through and you are not speaking in tongues. 

Harvey was so sick and the doctors kept putting us off.  It was so discouraging.  I would never break down in front of Harvey because I was always reassuring him that everything would be okay.  Our primary care doctor is great, but this was way out of his league.  He did everything he could to support us, but it was up to Shand’s to get him listed and transplanted.  They are the ones that kept stalling.  When Shand’s finally told us they were not willing to list him because of a cardiac issue, we were devastated.   They told us we could seek a second opinion from a more aggressive center.  This was my wake up call.  They could have helped him, but they chose not to.  He was running out of time and I had to find the most aggressive center.  You know the rest of the story. 

As soon as I get some free time, I’ll do some research in your area and let you know what I find.  Hang in there.  Find a quiet place and let it all out.  You probably need a good cry.  (((HUGS)))

Penny

Hello Everyone,

I haven’t been able to touch base lately.  Work has kept me extremely busy.  In my free time, I sort out meds, pay medical bills, or take Harvey to the doctor . . . etc.  He has been doing well.  He currently weighs 159 lbs.  His appetite has returned and he continues to walk everyday.  He lifts 5 lb weights as well. 

We finally got information from both doctors regarding the nodules on Harvey’s lungs and the Aortic Aneurysm (AAA).  Both doctors want to wait 3 months to monitor for changes.

Harvey and my Grandson, Austin, really seemed to enjoy the camping trip.  It turned out to be quite exhausting for me, but it was worth the while.

I’ve read over some of the posts and am sorry to see so many individuals and caregivers still suffering.  I pray that someday a cure will be discovered to put an end to the nightmare.

Stay strong.

Penny