Saturday, April 13, 2013

Back Home Again

Hi Everyone,

Well, we made it to Michigan yesterday. Lauren had her ultrasound and saw Dr. Sonnenday. I think things will start looking brighter now.

We got to Michigan at about 12:30 yesterday and went straight to the CVC (cardiovascular center) for Lauren's ultrasound on her legs. We had a really nice technician that explained everything to us. I am happy to report that Lauren had no blood clots!!! Yippee!!

Lauren is supposed to walk as much as she can, but she was so tired from the ride up and the CVC was so far from where we parked, that she rode in a wheelchair. When I pushed her all the way back to the cancer center, I asked her at the elevator if she could walk the rest of the way and she said yes. So we parked the chair and got on the elevator. She walked to Dr. Sonnenday's waiting area with  little problems. She does get out of breath quickly because she is carrying about 30 pounds of extra water weight since the surgery. It is so weird because her face and neck look so much thinner, but her body and legs below the waist are bigger!!

She sat and kind of dozed off while waiting to be called back. The nurse called her back and her blood pressure was still really low. I think it was 100/40. It was 80/40 in the hospital and she was really light headed. While we were waiting in the exam room, Sis called and asked where we were. She had finished up her work and was heading over from the children's hospital called Mott, where she was working this week. Sateesh, Dr. Sonnenday's surgical fellow, came in first to examine Lauren. He had assisted Dr. Sonnenday in Lauren's surgery and came to see Lauren most days when she was in the hospital where he lead rounds. He is the nicest guy, always smiling and happy. He informed us that he was flying out in about 20 minutes to retrieve a liver for a transplant. He removed the stitch Lauren had from her drain and I don't think Lauren felt a thing. He asked her a lot of questions about her swelling and medications she was taking. He said the oozing of her incision at the top was ok and not to worry about it. It was not infected and would be ok. The bottom half of her scar looks great and is really healing nicely. I'm sure they aren't too worried about the scar because it will be cut open in a few weeks anyway. Maybe one day, Lauren will let me take a picture of it. My Mom and Dad were shocked at how big it is.

Sateesh left and went to brief the big kahuna, Dr. Sonnenday. We are all so in awe of him, I'm sure we look like big dummies just sitting and staring at him. Haha. He is so easy to talk to and I have never heard one person at U of M say one thing bad about him. Every time any nurse or tech asks who Lauren's surgeon is and we say Dr. Sonnenday, they always say "He's the best." Every single time. He checked Lauren over and told her to keep taking the lasix and he will call her next week. If she loses weight, it is working, if not he will up the dosge again. He said other than her potassium being low and Wo being anemic, her labs look much improved. Her liver functions were all normal which is awesome. He said her hair could be falling out for numerous reasons. Stress from surgery or her liver regenerating are two reasons. One of my our friends wrote to me on FB and said after her liver surgeries, her hair fell out too. I was worried Lauren was developing ascites, which is swelling and fluid around the belly that has to be removed by paracentesis, which is basically sticking a tube in the belly and draining huge amounts of fluid. Dr. S and Sateesh both felt it was fluid from the surgery and not ascites. Thank God for that!! Lauren asked Dr. S why she had to have an MRI on the 28th and not a CT. If you follow this blog, you know how much she hates MRIs. He said it would give a better picture of the side they removed the tumors from in making sure no new tumors had grown and to make sure the two they removed were completely gone. It was a good enough reason for Lauren, so she quit her grumbling. Dr. S wants Lauren to have labs done again this coming week at Mercy so he gave us orders to take with us. Other than the fluid and the other things I mentioned, he felt Lauren was doing well and quite happy about things.

We decided to go for a late lunch after that. Sis and Bruce met us at Applebees. They have a 550 cal. menu that Sis, Wo and I chose from. They had steak and shrimp and I had steak. Bruce had buffalo wings. This was good for Lauren since she needs to eat a lot of protein. Too bad she only ate about 1/3 of it and was full. Bruce tried to eat the rest.

 We said goodbye and were on our way back home. I stopped at a rest stop about 80 miles into our trip back home because I couldn't keep my eyes open and I knew Lauren should get out and walk. I got a big Starbuck's coffee and it did the trick. I was dancing in my seat all the way home!! Lauren was having a really hard time in the car. Every bump really hurt and her legs were killing her. I gave her an ativan to try and calm her down and she dozed a bit the rest of the way. She was so happy to get home. It is 10:30 this morning and she is still sleeping. Poor kid.

 She hopes to start walking on the treadmill today to try and get rid of her extra fluid. I'm sure if she puts her mind to it she can do anything. We are hoping she will start feeling better and have a turn around this week. This has all been harder than we ever could have imagined. Thak you so much for your support. I will update you of anything new. Until next time...



  1. Pam,
    I’m very relieved Lauren doesn’t have blood clots! My daughter also experienced fluid retention, hair loss, low blood pressure and her incision was slow to heal.
    One of the transplant nurses preformed therapeutic massage on Heather with amazing results! Within a couple hours her digestive system started working and her water weight went way down. Perhaps this might help Lauren so I wanted to mention it.
    We were told the hair loss and slow healing was caused from lack of nutrition. Drinking something like Boost a couple times a day was helpful. Heather lost 30 pounds from each of her surgeries. Once the water weight dropped off she looked pencil thin. Heather developed bile leaks as well as retaining water. In her case the bile broke through areas her liver was weakest. These are diseased livers that are being operated on so unfortunately sometimes the recovery is up and down. Heather’s blood was tested and she was given bags of potassium and magnesium on a couple occasions. Her wounds healed practically overnight as a result. She also felt much better.
    Pam, going through this is a grind and I’m so glad you have good family support. There are many ups and downs with these big surgeries, but remember, Lauren is healing each and every day. Her body is trying to cope to her reduced liver function plus her liver is regenerating. Slowly, but surely she is getting there. Heather said that the thing that helped her most after her transplant was being forced to be active. We walked the halls of the hospital and around the neighborhood when she got home. I lost a few myself and also earned a few grey hairs in the process! Take care and tell Lauren I’m thinking of her.
    You’re in my prayers and I wish you and your family the best.
    Hugs, Cathy

  2. Thanks so much for all of your wisdom and experience, Cathy. We tried and tried to get someone from occupational therapy to come and wrap Lauren's legs and massage them. We had a physical therapist that was really nice and wrapped them and then my daughter, Kristen wrapped them for her. That was one thing that I was really upset about. Occupational therapy never came and we were told they were too busy. That is just not acceptable and I wonder if Lauren would have felt better if they would've seen her. Lauren walked on the treadmill for 15 minutes today and seems less puffy. This whole process is so slow!! And difficult. I never dreamed it would be this hard. Thanks again for making me feel better, Cathy. You are an angel!!

    Love to you and Heather,

  3. Pam,
    Lauren is a fighter and she will get through this! I understand how much worry is involved and what a grind this is. I hope I don’t sound like a know it all. I’m just a mom who’s been through something similar. It helped me when people shared and gave me a better understanding that things sometimes take longer. Pam, you know Lauren the best and will know if something is seriously amiss.
    On a few occasions we paid for Heather to go to a massage therapist near our home who offered therapeutic massage. In the hospital we were fortunate that a compassionate (male) transplant nurse had the knowledge and time to help. We learned from that experience and added it to our toolbox of helpful things. The massage gets their lymphatic system moving.
    During surgery they are put into weird positions for long hours and then spend a lot of time in bed so it’s no wonder they are achy on top of trying to heal from surgery.
    In Heather’s case it took 3 months to recover from her liver resection. I’m not saying it will take Lauren this long, but it’s not uncommon for the recovery to take a while. Heather was physically in the hospital a month from her complications. They would release her then something would crop up and she would be readmitted. You have the advantage of having Kristen and her husband on your team, which is truly a blessing.
    I hope things really go Lauren’s way soon and her fluid issue is resolved. A couple days can make a huge difference and remember she is healing even with the fluid. Praying and thinking of you all.
    Take care, Cathy

  4. I appreciate anything you have to say, Cathy. I looked up therapeutic massage and it said to lightly massage toward the heart, so I massaged Lauren's lower legs and she said they felt better. They don't seem as puffy. She really doesn't want to go to anybody for a massage. We went one time to a place for cancer patients and she got a massage that made her so sore she cried that night. So I will try and massage her legs every day and see if that helps. Did Heather take Lasix and if so did it help? Lauren will have to go to the bathroom once, maybe twice after taking it then nothing. I wish it would make her go all day. I think the reason Lauren's neck and shoulder are still sore is because of the way they positioned her during surgery. I can't imagine laying in one position for eight or ten hours. Ouch!! I'm sure she will feel way better one of these days. She is already much better than right after surgery. It is so difficult and anyone that says it's not is lying!! You do not sound like a know it all whatsoever. I am so grateful for your help. God bless and thank you so much.

    Love and hugs,

  5. Pam,
    Heather took Lasix after both her surgeries. After her liver resection she started looking several months pregnant and it was discovered it was due to a bile leak. We didn’t learn this was the reason for several weeks though. Her doctor’s thought it was from the cut part of the liver weeping or fluid retention. She was prescribed Lasix, but that didn’t help. She had a HIDA scan, but the bile leak didn’t show up on it. When she was released from the U of M she would see her gastro specialist that lived near us. He took care of things he was able to handle, but she had to return to the U of M for more serious problems. Her gastro doctor had her abdomen drained and that is when a gallon and a half of bile was removed. Up to that point we were not sure what the fluid was. Because the HIDA scan was negative they thought it was weeping from the cut side of the liver. The gastro doctor inserted a drain and bag in her lower abdomen which gave her relief and prevented the fluid from accumulating in her abdominal cavity again.
    Heather went to a meet and greet with a new hepatologist at the U of M since her old doctor left the hospital. He took one look at Heather and said she had a bile leak and admitted her immediately. I told him she had a HIDA scan that was negative, but he said he knew it was from a bile leak. The next day she had an ERCP preformed and they patched the leak and she felt much improved and it fixed the problem.
    After her transplant when she was still in the hospital she developed a large amount of fluid retention in her hips and legs. She was able to laugh about it, because it looked like she had Kim Kardashian’s booty! In this case the Lasix worked like a charm and resolved the problem quickly.
    I’m not saying Lauren has a bile leak, but we went through something similar to what Lauren is experiencing. Once the fluid issue was resolved Heather recovered quickly.
    I hope they can get to the bottom of what is causing Lauren’s fluid retention so she can feel better. The extra fluid made Heather hot and just not feel well. I truly sympathize with what you’re going through and hope this can be diagnosed and resolved quickly.
    Praying and thinking of you all!
    Hugs, Cathy