A long, long day

Yesterday was my first trip back to UCSF. I saw the surgeon, and he is delighted with my progress. The appointment was for 8:30 A.M., so we had to get up early and drive in a bunch of traffic. I walked from the parking garage to the clinic. He adjusted my meds and I got more pain pills. I asked him about a pulling feeling that I have in a place far away from the incision. He said that if I knew what he did in that area, I would know why it is so sore. I have cut down on the pain meds and notice all sorts of sore spots throughout my abdomen. The bottoms of my ribs are also very sore due to the retractors.
We decided to go home through Half Moon Bay along the Coast. It was very pretty and we got some peas (Karen, they were even more delicious than the ones we got). We had to stop at Kaiser to pick up the prescriptions and I had to do some labs. Finally we got home, only to go back after dinner to get more meds and another lab test. I was tired!
Tomorrow I have to go back for my regular labs. This is hard work!

and...and....and

The range of guesses for the total length of the incision was a low of 13 inches (thank you Brian!) to a high of 32 inches (what were you thinking Randy?). Dad measured and the total is 16 and 3/4 inches. Congratulations Christine! The staples were a bit trickier. Dad had to start over because he lost count. The range of guesses was a low of 26 to a high of 75. Sadly (for me) the high of 75 was closest to the actual count of 64. Congratulations Karen! They get removed next Tuesday--I think that will be the last big owie for awhile.

Contest Anouncement!

The kids have decided to guess on how many staples and the length of Cathy's incision, horizontal plus vertical. Results to be announced tomorrow!

Lab results and a little more

UCSF called this morning. They tweaked one of my meds (less!!!) and the lab values are good. Creatnine (kidney function) was higher, but that was due to to one of the meds. I am still anemic and very weak; I didn't need a lab test to figure that out. I spend most of the time on the couch or in bed. The surgery part feels OK and if I had any energy I'd at least be walking all over and maybe sorting and folding clothes.

Amyloidosis

Amyloidosis is a strange disease. I've seen probably about 50 with familial and 20 with primary. I also belong to a nationwide online support group with many members. The common thing between all of these people is that the amyloidosis affects each of them very differently. The protien fibrils basically destroy organs and tissues--personalized. The only way to diagnosis it is with a tissue sample--there are no blood tests or x-rays or anything. For those reasons it usually takes awhile to diagnose it after symptoms have appeared.
Tonight at 10:00 pm (9 central?) on ABC there is a TV program about a guy with amyloidosis. I've also heard there are a couple of "House" episodes that feature amy and one "Mystery Diagnosis". I'm looking forward to watching it. Might be interesting....

Win-Win

Today I got to get out of the house. I was actually looking forward to it, but car rides still jostle too much to be fun. I looked at the lab slip. I go every Monday and Thursday for I don't know how long. The lab order was for 100 visits and expires in a year. I'm tested for eighteen different things. Luckily it only needs four vials of blood. I'll be able to get my results online. When I gave her the choice of arms, she kind of gasped. They look awful!
I'm wondering how anemic I am. I have a chair at the top of the stairs as a "pit stop" when I go to bed. I took a couple of short walks to the door last night and am beginning to walk like a human being--good foot positioning and good posture.
The house cleaner comes this afternoon. It's shaping up to be a better day!

Help

I need about an hour's worth of housework today or tomorrow. If someone can help and email me I would sure appreciate it. Thank you so much.

Buttermilk pancakes

I just finished eating almost a whole buttermilk pancake, a strip of low sodium bacon, and a glass of grape juice at the table. It sure makes getting up something to look forward to! Lon makes them from scratch and makes them often enough that we can use up a half a gallon of buttermilk before it spoils. Thanks honey!

Pain

I think the surgical pain (envision a piece of barbed wire wrapped around your stomach and being cinched) is getting under control. I have had a horrible stomach ache from all of the meds I have to take. I take the next batch around 10, so I'll see if I need to call the doctor.
I'm really walking and sitting well. I climbed a flight of stairs at the hospital yesterday because the physical therapist and Lon got all buggy on me. When I went to bed at 11 I climbed right up the stairs. I sat to brush my teeth though.
We didn't get home until seven last night. It was a long drive home in traffic and we had to get a few more meds at the pharmacy first.
Today the order of business is to get a few groceries. After being gone for a week we need to get a few things. Whatever will Lon do without me? He has been at my side the entire time--he'll never know how much that has meant to me. Looking forward to feeling a little better today.

And things are looking up???

Just when I'm getting ready to make a gushy post to the heroes in my family, they offer more help. Brian wants to come and read to me Eclipse. Robert wants to find a copy. Alan wanted to get a bucket of silverware and shake it ouside my door every half hour so I wouldn't miss the 4 am blood tests, the 1 am weighing, the vitals, etc. etc. Obviously that post will wait.

HOME!!!

Holy Smoley!!!

I guess I'm going home today. Everybody thinks I will do much better in my own home with my own pain meds.
The holy smoley is my kidney function. It has recovered to where it was in January! The med. team was in the room and told me and I threw up both arms to a rousing, "Yee Haw!" They laughed with me. What a great blessing!

Lillys Freshen The Day

Alan brought by these beautiful Lily flowers. The hospital room now smells like a flower shop. I think we get extra people coming into the room so they can smell the flowers. Almost everyone that comes in comments on them.

We are still working on getting a pain meds schedule. Other than her high blood pressure all her numbers look good.

Lon

Sunday afternoon

I love watching the fog outside my room in the morning. This morning was no different. My Dad used to tell me that it's a good day for a nap. It was an excellent one because we each had at least a couple!
My kidney function improved overnight as did my hematocrit. Very grateful for that.
I was disappointed in myself this morning--I didn't feel well at all after breakfast. I don't know what it was--it could have been oral steroids, or low oxygen saturation, or anemia or plain old laziness. This afternoon I did take a short jaunt to the nurses' station. That will have to do.
The plan is to go home tomorrow. I'm OK with that.
Thank you for all of the well wishes and prayers.

Wow!

I got to spend some time with Mom today. She is making great progress and will probably come home on Monday.

Saturday Morning

At least that's what the clock says. The clock in my room tells the day of the week along with the time. Normally I would consider this extra information, but things get skewonky around here.
I've had breakfast and a walk around the floor up here. I've had morning meds, blood work, vitals, sugar levels, insulin, and probably a few more things done. Safe to say that I've been busy, but haven't accomplished much.
Lon is fantasizing about a shower and change of clothes, so maybe Alan will spot him for a couple of hours.
I'm a little more anemic, but that's hardly new.
We are lucky today. My little section of hallway is getting waxed! It's noisy and I'm blockaded in. Must be patient.
Thanks again to all of the well wishers and prayers said in our behalf. They are certainly appreciated.

Settled In

Cathy is doing very well. We just did a lap of the hospital floor with the physical therapist. Cathy was up and down mock stairs as well. The big news is that her kidney function has improved slightly. Her doctors don't think that she will need dialysis while she is here at the hospital and the shunt in her neck can come out today. She is happy and up beat and tapering off the pain meds some.

Lon

A Good Night

This is Karen. I talked to Mom this morning and she said she had a good night last night. She had a really nice nurse and she got out of beds several times to use the bathroom or to walk. She even took some laps around the nurses' station. While I was talking to her her breakfast tray arrived. Apparently the hospital food is pretty bad when they have you on a renal/diabetes diet.

Here are some before and after pictures of an IV in her arm. It made quite a nasty bruise. (Mom has always been capable of pretty impressive bruises though.) It's always a good sign when they start getting rid of IV's!

Mom mentioned that they're planning on removing the PICC line in her neck. They were keeping it in case she needed dialysis. The transplant and medications can take a serious toll on her already damaged kidneys. That was one of the major concerns doctors had about doing a liver only transplant. They were worried she might come out of surgery already on dialysis. Her kidney function has improved enough today that they don't think she'll be needing dialysis during this hospitalization. What a blessing! Thank you for all your prayers on her behalf!

Visiting Cathy's Liver

On Cathy's afternoon stroll we visited the room next door, where Cathy's domino recipient is. She was happy to meet us. She also had a rare disease. Her disease doesn't allow her to eat many foods and causes her constant itching. She has been suffering for 3 years. She is doing well also. (I did run this post past her to see if it was OK to share this information.)

Hi Ya'all

Here I am at about 39 % mental, which is an improvment. I have appreciated all of the prayers and comments.

Up and Walking

This is Karen. I just talked to Dad and they have Mom up and walking. You go girl!

Every time I have tried to call today they have been busy with nurses or doctors or some other thing. I guess they're on a pretty tight schedule over there. I hope they give Mom a break and let her rest.

Keep up the good work Mom!

Main Floor

Cathy passed to the next level (Main Floor)! She has a private room and there is a unusual chair that folds out into a sleeping slab. I was a bit unsure once I unfolded it, what kind of night was ahead of me, any rolling at all would end me up on the floor. There is only about a 1/2 inch thick mattress and it is about 18" wide and about 5 feet long. It did beat my first night curled up on a chair in the waiting room.
We have had a lot of visitors this morning. They had Cathy up and brushing her teeth at the sink and Physical Therapy was here to help her walk down to the end of the hall. They tuckered her out. She is to walk three times a day.

Getting Ready to Move out of the ICU

This is Karen. I just talked to Mom. It was so good to hear her voice! She sounded pretty tired. We talked about how cool it is that she gets to meet the woman who got her liver. She also told me that there's a nephrologist who is now seeing her who is totally interested in her disease. Finally! He's been researching it and trying to find out how he can protect her kidney function. That is such great news!

They are getting ready to move her to a regular floor. They're going to give her a PCA (patient controlled anesthesia) pump to help control her pain when she's there since she won't have a one on one nurse to give her IV meds regularly. She'll be able to push a button and get almost instant pain relief. That will be good because she mentioned that she's had her pain get away from her a couple of times since they started switching her over to the oral meds and making the other ones PRN (as needed).

She has loved all of the comments she has received on here. Please send her your love and if you don't want to comment publicly you can email her at cathytidwell@gmail.com.

Love,

Karen

Progress

She is slowly recovering. It was really hard for her to get rest last night because the nurses came in so frequently. When she is moved out of the ICU the sleep interruptions should be less frequent; however, there is a tradeoff: The tube from which they are taking blood samples every four hours will have to be removed, meaning that every new blood test will require another needle poke.

Also, Mom has been given insulin to counteract some temporary diabetes caused by another drug she has to take.

UCSF is a teaching hospital, so there are medical students everywhere. Five minutes ago, there were four doctors and a nurse in the room, with about 15 med students gathered out in the central ICU area just outside the door.

Dr. Stock (the one who lead the transplant surgery), came by about 15 minutes ago. He had some great news! The woman who received Mom's liver is "ecstatic" and wants to meet Mom ASAP. She is currently three floors up, but in a day or two they will be on the same floor and able to visit each other's rooms. It's really miraculous.

Dr. Fix was just in the room now asking Mom about how she feels. It is really good to see that Dad doesn't have to speak for her. She is totally lucid and apparently out of her anesthesia haze She is sharp. I think she is joking with the doctors just a little more than they would like.

Anyway, when the doctor was talking to Mom I glanced over and unintentionally caught a glimpse of the very top part of the incision. It does not look as scary as I expected. (Mom wants me to report these types of details.)

Sitting in a chair

Mom is sitting in a chair. She had a lick of a popsicle but they took it away.

Recovery will be slow but so far so good.

ICU Update

Cathy is fairly comfortable unless she moves. We have moved her around in her bed twice. The first time she was, I think surprised by her surgery pain, but the second time she made the move with no problems. They even changed her sheets while she was in bed. I don't think it is a technique that I will be using on our beds at home. Cathy has a one-on-one nurse. She handles any issues or requests quickly. Even though Cathy is pretty doped up and doesn't start any conversations, she still has a quick wit with her responces to questions!

ICU--Doing as well as can be expected

We just visited Mom in the ICU. She is conscious but still very tired and groggy. Her nurse is named Miriam.

The nurse asked Mom which hospital she was in and what day it was, and Mother answered correctly. The nurse said that at this point many patients can't remember.

Blood pressure and breathing rate are normal. She is being eased her off the oxygen. They are taking frequent blood samples to monitor liver and kidney function. She is receiving Dilaudid for pain.

Miriam said that Mom may be able to get up and sit in a chair today. It will hurt, but apparently it is much easier to get moving sooner. Mother is agreeable to the idea. At this point, she seems to have a great attitude about everything. Could leave the ICU within the next two days.

Surgeon came down in his scrubs to talk to us

The head transplant surgeon, Dr. Stock, just came down and spoke with us. We will possibly be able to see Mom in about half an hour. The breathing tube is out and she is coming back to consciousness.

Surgery went well. The new liver seems to be functioning fine. Mother lost 400 cc of blood, which is very good. Her own blood is being returned to her.

The doctor said he "heparinized" her. Not sure what that means, but I guess is to help with coagulation of blood. Apparently, it comes with a slight risk of bleeding, which means they will monitor her closely for the next 24 hours.

Going forward, the antirejection drugs may really impact the remaining kidney function she still has, but Dr. Stock said that it will be days, weeks and months before they "see if we can nurse her kidneys back."

The domino operation is a couple of hours behind. It is really touchy to ask about the recipient of the liver because the hospital enforces strict privacy rules, but the doctor disclosed that the recipient was a 62-year-old female. That operation is going very well. It is a separate surgical team.

We will update the blog when we see her.

A new dawn. . .

The sun is rising in San Francisco. Dad and I slept about four hours in the waiting room. We got a voicemail about an hour ago saying that things were going well. We anticipate she will be in the ICU within an hour or so. It's likely she will be very groggy and possible that she will not even remember being admitted last night. I will post another report when we have more information.

Cathy is currently in surgery.

This is Alan. I arrived about 45 minutes ago. I went upstairs and Mother was in the rolling bed in her gown talking to Dad. We reminisced about the time Dad was in the hospital with his shattered ankle. We met the anesthesiologist, Dr. John Taylor. He seems really nice.

At 11:05 Pacific Daylight Time, they wheeled mother into the operating room. Dad and I came downstairs. We were told this operation could take five to ten hours.

Normally the surgeons just throw the recipient's liver away, but in this case, Mom's liver is being donated to someone else, so extra care is required in removing her liver.

We learned about the donor: From Central Valley, female, 35 years old, died of head trauma. What a tragedy! A daughter and granddaughter and a sister and very possibly someone's wife. Someone's mother. Surely that family needs our prayers right now. We are grateful for their decision to go forward with the donation. We think the organ network will allow us to reach out to the family to convey our gratitude.

Will post more when we have new information. Could be a long wait.

Order One of These Please

Mom's telling the doctors she wants her scar/stomach to look like this one when they're done. Hopefully they can deliver. That would be a definite win-win.

I love that even on her way to the hospital for this major surgery she still has the sense of humor to joke about this picture with me. Love you Mom.

Karen

Go!

UCSF called and we're on our way. Yes, we are both terrified. Just this week I made a decision that this disease would NOT be my identity. I will get better, and this will be a blip in the road. I hope to be home within the week ready to rock n' roll. Prayers for our family, the family of the donor, and the family of the person who will receive my liver.
Alan and the kids will keep the blog updated.

A good daughter

Waiting for this transplant is the pits. Karen visited me a few weeks ago, then went to Utah for her sisters-in law double wedding (how fun!). She wanted to leave her boys with her mother in law and bring baby Claire and come and help me. She waited and waited and waited and it was time to think about going back to Virginia. Then she had a great idea! Rent a car and drive with the four kids and come to visit. She left bright and early. Lon and Alan met her in Reno and helped her drive the rest of the way. We had so much fun together.

It's hard to do anything together because we have to take two cars to do anything together. We are lucky that Grandpa is such a willing babysitter. He watched the boys while Karen and I and baby Claire went to Half Moon Bay. Why Half Moon Bay? Fresh peas!! There is nothing better to sit and eat than fresh peas. We got to the pea stand and tried a couple. They were divine! I asked the guy if he had any crates of peas for sale. He did. I asked when they were picked (yes, I am turning into my mother), and he said just that morning. Karen and I looked at each other and said we'll take a crate. A crate weighs about 28 pounds. He opened the lid and crammed more in. I guess he recognized desperation and adoration in our eyes. He put it in the trunk for us. We got two grocery sacks and stuffed one with peas (we used the other one for the pods) and drove back home. We finished the bag before we got home. The remainder of the week we carefully monitored each other's pea consumption. Heaven forbid one of us gets a few peas more than the other one. She became very solicitous of my potassium consumption. I couldn't find any definitive information, other than dried peas were high in potassium. Since raisins are high in potassium and grapes are low, I thought the same must be true with dried peas and fresh peas. She fired back that eighteen or so servings of anything has to be bad. It was an uneasy truce.

On Friday we got home from the Temple and she was eating peas and putting the empty pods behind her. She claimed that the boys were helping her blah blah blah. I found it highly suspect. Lon called it the "Wall of Shame." I got a lot of good mileage teasing her about it. Soon all the peas were gone. Mother and daughter remained friends.

She also made cinnamon rolls. She can make some good cinnamon rolls. The only bad thing is that they never last 24 hours.

We also went shopping to the outlets, and made several trips to In 'N Out Burger. We had a couple picnics with the family and picked a ton of wild blackberries. It wasn't quite a repeat of the pea adventure, but close. While we were shopping Grandpa and the boys caught a lizard. It wasn't Gizzard (the lizard they caught last time). I don't think this lizard was very sociable--he bit Cameron when he let him go the day they left.

Sadly it soon became time to go home. Her husband has an internship back east and has to work a ton of hours this summer so she was pretty much on her own with Mrs. Right Hand and Mrs. Left Hand for helpers. She left from SFO with the four kids, three giant suitcases, three backpacks, two carseats, a stroller, and had to change planes in Minneapolis then fly to Virginia. After she got to Virginia it was about an hour and a half drive to her home. She bribed the big boys (five and three years old) with any toy from Toys R Us. Four month old Claire is a good baby, but still needs a lot of care. Two year old Tyler was the wild card. He has a mind of his own and could melt down for just about anything. They were all smiles when they left. They got home lately and word on the street says they won't be needing to go to Toys R Us. She wasn't ready to talk about it yet. I think all five of them should go to Toys R Us and get whatever they want. Thanks for coming, Karen. I sure love my little girl!

New meds again

At my last appointment with the kidney doctor I was having a bad day--just felt crummier than I usually did. My anemia was worse. The kidneys produce a hormone that regulates the utilization of iron in your blood. He prescribed an artificial substitution for it. The bad news is that it must be injected every week. We picked up the prescription and went to the injection clinic so Lon could learn how to do it. Right. My squeamish husband is going to keep his eyes open long enough to give me a shot. I will admit I was in a bitter and perhaps less than cooperative mood when we went. I sort of wanted to be in the other room, but since I was getting the injection, I had to be there. The nurse taught Lon how to do it. He was very attentive, bless his heart. We both wanted her to give it to me--you know, for complete instructions. She went ahead and did it. The anticipation was much worse, and I think Lon kept his eyes open. Sadly, I got quite an impressive bruise. When it was time for the next shot, we again went to the injection clinic. Lon said he didn't want to hurt me (thank you) and wanted a nurse to give it to me to see if I bruised again. I didn't. Time comes for the third injection. Karen was visiting and she was hot to trot to give me my shot. I remember visiting her when she learned how to give shots in the BYU nursing program. We got there and she had a syringe and was squirting saline all over the place and in general was pretty maniacal about the whole new skill thing. She had the same maniacal glee when she gave me my shot. She did a great job and I didn't bruise.

I don't know who will give me my shot next week. She went home. The absolutely great news is that I do have more energy. It is great to have a little sass back!