WE HAVE A LIVER!

Thank you all. (((HUGS)))

We went back to clinic today. They haven't gotten the results back yet from today's labs. If any changes are to be made, they'll call us. All three surgeons were tied up (that's a good thing-means someone else is getting a liver) and not available to look at Harvey's incision. I continue cleaning and packing it. No signs of infection :) I'm feeling much better now. My sinuses give me a problem at night and I cough in the morning. Harvey is just taking it in stride. He is such a trooper! He managed to walk all the way around the block yesterday.

I heard horror stories from other patients at clinic today. They had the same sad story to tell about how the established centers turned them down for transplant or were resistant in getting patients listed. If I've learned one thing, it's to remain vigilent. When a center is trying to establish a liver transplant program, they are extremely eager to list patients and get them transplanted. They must do this to get Medicare Certified and establish a reputation. I know that Florida Hospital transplanted a gentleman for free during this period. Keep a lookout for these centers. It could make all the difference! It did in Harvey's case and at least 3 other patients we met today. One gentleman was transplanted 2 days after being listed!

Never give up. Love you guys!

Penny

I got a call from the clinic to reduce Harvey's Prograf down to 2mg in the am and 2mg in the pm. His blood pressure has been running a little high, so they prescribed Norvasc 5mg per day. The more he walks, the lower his blood pressure gets. His blood sugar is between 95 and 132, so I haven't had to administer any insulin. He doesn't have much of an appetite, but he must eat in order to rebuild his muscle mass. Looks like this will be our biggest challenge.

Harvey's Sister is staying with us and she is helping in his recovery. She is wonderful and has been a God send. I rested for a little while, but then I returned to work Friday. I've got a lot of catching up to do.

Hope all is well with everyone. You continue to be in my thoughts and prayers.

Penny

I know nothing bout Norvasc. I am worried because he never had high blood pressue until the varices appeared. He was treated with Metoprolol to ease the portal vein pressure. I would have expected this to resolve after the transplant, but was sadly mistaken. I would prefer this scripting to be left to his cardiologist, but then again, it must be something that will not interact with his transplant regiment. I'm trying to be patient. We'll see how it goes. It seems the more he exercises, the better his blood pressure gets. Perhaps when he gets stronger, he will no longer need the high blood pressure meds.

I wouldn't be so concerned about Harvey's weight except that his healthy weight was right around 185 lbs. He currently weighs 139 lbs. He eats, but I have to stand over him. Hopefully, his taste for food will return soon.

The wound I have been packing seems to be getting smaller with a lot less drainage. I don't see or smell any signs of infection. He will return to the clinic tomorrow so the surgeon can take a look at my handy work. I've been very careful not to allow anything to contaminate the wound. Hopefully, all is well.

I see many new members coming into the forum. I am happy to see they found HealingWell, but it is a testament to the many people who are suffering with ESLD. I pray for a cure.

I'll be in touch. (((hugs all around)))

Penny

It's good to know that Harvey continues to do so well.  I can't believe he is doing that amount of walking such a short time after his transplant!  Simply amazing!

Having his little sister here has proved invaluable. She is very health conscious. If I told her he had to do 100 jumping jacks (of course it's too soon for that) she would see to it that he did 101! She doesn't take no for an answer. She takes his vitals, ensure he eats properly and takes his meds on time. I have confidence when I leave to go to work that he is in good hands.

It seems the more he exercises, the better he feels. So he is giving it his all. I am so proud of him. I told him that when he is completely recovered, I will allow him to be the BOSS again. Until then, I call the shots. He's learned to trust my judgement and he has really been cooperative. It's taken our relationship to a new level.

We will celebrate our 25th wedding anniversary in September. We have been to hell and back and our bond cannot be broken. Our love for one another is stronger than ever. I remember the day he went into surgery. I shut the door and we put all of our feelings on the table. We knew he might not make it through the operation and we ensured nothing was left unsaid. We were at peace. During the operation, my daughter was one pins an needles. She was frightened and crying and couldn't understand how I could be so calm. I explained that this was the culmination of everything we fought for. If he didn't make it, it was God's will and I was satisfied with that.

His looks like a frail little old man now. But when he looks in the mirror, he doesn't get self-conscious. He knows it doesn't matter. When I look into his eyes, I see the same man I fell in love with all those years ago. He knows I will always be by his side. True love is a powerful force. It's where I get my strength!

Love ya'll.

Penny

Penny, I am so glad that you have some reliable help.  That takes quite a load off of you and you don't have to worry about Harvey while you are at work.  He seems to be recovering beautifully.  A surgery like that takes a huge toll, but in time he will start looking better as he feels better and stronger.  I know it doesn't matter to you and you are just happy that he has had a second chance.  However, our appearance reflects how we feel, so I think you will see improvement in that area as he recovers more.  I didn't even realize how bad I looked before and just after my liver surgery for cancer, until people started mentioning it as I got better. 

Thanks everyone.

There was no medication adjustments at clinic yesterday. They want to do iron studies (blood work) on Monday. His hemoglobin dropped 1 point, but it is still above 9. Otherwise, he is doing great and only has to go to clinic once a week.

My Sister-In-Law, Darlene, is wonderful and she was right there with me back in Novermber when Harvey slipped into Hepatic Coma. She knows how far he has come and is enjoying the time she is spending with him. She is a very giving person and very compasionate. She has done a great deal of work for the Red Cross. If there has been a disaster in the country over the last 15 years, I guarantee she was there.

I feel very blessed to have so much support. (((hugs all around))). I'll keep you posted on Harvey's progress.

As always, you are in my thoughts and prayers.

Penny

Thanks everyone. Harvey continues to do well except for his blood pressure. It is still high. It really concerns me. I don't understand what is driving this. We have to go to the clinic for labs tomorrow (iron study). Harvey's hemoglobin dropped 1 point. We're going to stop in and speak with the doctors.

JoAnn - Hang in there. I'm glad I could give you a boost. Watching a loved one decline day in and day out can become very discouraging. Love keeps hope alive. It makes you more determined to stick it out. It's worth the effort!

I hope someday medicine will advance enough that the transplants aren't necessary. The liver is such a remarkable organ. Heck, it's the only organ that can regenerate itself. Perhaps the scientists will crack the code some day and people can stop suffering.

I hope you have a good evening. ((hugs))

Penny

Yes, he is on a low sodium diet. The transplant team up'd his Norvac to 10mg per day. His blood pressure last evening was 138/90. Still not where I would like it to be, but it is improving. We go to the clinic tomorrow. I'm going to make several inquiries to try and determine what is causing the problem.

I'll let you know.

Penny

Hey Connie, we actually go to the clinic on Thursday.  I thought it was Wednesday. Anyway, you know me . . . I'm not going to rest until I figure out what his problem is.  Stanford University has an excellent resource that discusses post transplant care.  Upon reviewing the material, I believe the problem is associated with the drug treatment for anti-rejection.  I'm still going to plug the doctors though. 

 

According to the material, increased toxicity (from the anti-rejection therapy) can cause; high blood pressure, tremors, paresthesias (numbness & tingling), and headaches.  He developed paresthesias in the last day or two and it really starting to disturb him.  It is suggested that the doses be reduced.  Of course, that will be up to the transplant team, but it makes sense.  They ask him every time they see him if he has any headaches and they also check for tremors.  They've never asked about numbness or tingling.  Guess what, I'm gonna let them know. 

 

I'll let you know what they determine.  Oh, by the way, the Stanford site is http://med.stanford.edu/shs/txp/livertxp/outpatient.management/management.html

 

I found it very informative.

 

Hugs back at ya!

 

Penny

 

Well, we went to the transplant clinic today and saw the surgeon prior to seeing the rest of the team.  He removed the bandage and gauze packing from Harvey's wound and said, "They're really doing a great job with this wound.  It looks very good."  I said, "They who?  I've been packing the wound."  He thought we had a visiting nurse come in a do this.  He said he needed to hire me.  Ha!

 

We explained the issues with high blood pressure and the numbness/tingling.  He asked when it started.  We explained that he's had numbness since his accident in the mountains (4 skull fractures, a broken pallet, 4 broken ribs, and 3 brain bleeds).  But the tingling just started recently.  He said that ProGraf can enhance any existing neurological disorders.  He figured that the doctor would recommend a CT scan of his brain to rule this out.

 

The doctor came in and we had to explain the symptoms yet again.  He was certain it was the ProGraf but ordered a CT scan to be on the safe side.  We haven’t heard back from the clinic yet so I’m pretty certain it’s the meds.  Labs on ProGraf levels take the longest to get back.  Once they get the results, they will call to make any necessary adjustments.

 

His blood pressure at 6:30am was 140/89.  By the time we got to the clinic it was 122/78.  It has been coming down gradually.  At least I’m not as concerned about it as I once was. 

 

Harvey is walking at a faster pace these days.  This is very encouraging.  He still has a very positive attitude and is grateful for the gift he has received.  His appetite is starting to return and he is enjoying his meals more.  So far, he has had no issues with his blood sugar.  It is in the low 90’s in the morning and around 105 in the evenings. 

 

I’ll let you know if his meds change.  Thanks again to everyone for the wonderful support you’ve provided me here.  I continue to pray for you all.

 

Penny

 

Penny, It is so encouraging to hear how well Harvey is doing. I continue to pray for you both.

 

Thanks PG!  I hope it helps to let those waiting for a transplant in on what happens on the other side.  I'm encouraged every time we go to the transplant clinic.  Yesterday, I met several newly transplanted individuals. 

 

When Harvey was going to Shand's and we weren't getting anywhere, one of the guys at work told me that his Uncle got a liver transplant for free at FL Hospital.  I thought it was a load of bull.  I asked him to get me some more info, but he didn't right away.  He eventually gave me his Aunt's phone number, but Harvey was already in FL Hospital by then.  I was too overwhelmed at the time to call her.  Well, I met his Uncle yesterday! 

 

We always swap war stories in the waiting room.  He said he was transplanted 15 months ago.  When he said they did it for free, I asked if he had a Nephew named Chris.  He did!  He said he had been going to Shand's when he had a shoulder injury.  Shand's told him that this had to be resolved before they would consider transplanting him.  He developed a bad case of encephalopathy and his wife rushed him to FL Hospital.  The director approached him and asked if he would be interested in letting his new team perform the transplant.  His insurance wouldn't cover it, and the director said not to worry about a bill.  He was the 13th individual to be transplanted there.  He looked fantastic!  If you met him on the street, you would never suspect he had a serious health issue. 

 

I'm certain he is not the only one that got a transplant for free.  In the course of going to the clinic, I've notice a couple of people coming in to get their meds free of charge.  This is why I've been suggesting that anyone desperate for help who is getting pushback from their center needs to look elsewhere—particularly at a center that is just getting off the ground.  A newly formed transplant team needs to perform transplants successfully in order to earn their Medicare Certification.  Without this certification, their program is doomed.  Insurance companies will not cover a center that is not Medicare Certified.  In effect, they are as desparate as the indiviuals needing their help.

 

I hope this knowledge helps someone out there.

 

Love ya,

 

Penny