bump in the road

Mom developed a fluid collection around the new kidney, which caused an "indentation" on the kidney, because of the pressure. The kidney appeared to be functioning well, however the surgeons recommended drainage of the fluid because so much was leaking from the wound. The drain was placed by interventional radiology on Friday 7/18 and seems to have worked. Now we're just waiting to see if the collection reaccumulates.

Mom feels quite well, and is going on four walks a day and has a good appetite.

Mary Jean and Max arrived yesterday from Cedar Rapids. Welcome to Baltimore, hons.

Hon is short for honey, and it's the quintisential Baltimore word. We even have Cafe Hon and Hon-fest.

That's all for today!
Sarah

update

Mom's still admitted to UMMS, working on getting her medication doses adjusted. She's very stable, with a good appetite, and the kidney is working well. She's working on resting and recuperating, and we expect her home in a few days.
-Sarah

Back to UMMS

Mom was re-admitted to UMMS tonight in order to adjust some of her medication doses. She is in good spirits and will get in touch with everyone when she is discharged in approximately two days. Kidney is functioning well :)
sarah

all's well that ends well

Well the living related renal transplant is Complete! On July 2, 2008 I went to the hospital. Mom had been admitted 6/30 for a heparin gtt, immune suppression rx and bowel prep, all of which she handled like a champ. I had pre-anesthesia testing on 6/30 which showed a low k (3.3), and trace hematuria (although only 0-2 rbc--i think it was myoglobinuria from the hard work of moving) so the tranplant nurse called 7/1 and threatened to cancel the whole thing. I had a major tantrum, and they agreed to repeat the labs on the morning of surgery. I ate bananas until I yacked (literally) and drank oj, and rested and drank about 4 liters of water to try to get rid of any myoglobin.

I got to UMMS a little after six on 7/2, and gave a urine sample and got an IV and blood work. I was still pretty uncertain about whether we would be having surgery or not. My senior surgery resident was my friend Jared from medical school, who'll be joining me at Hopkins for his fellowship next year. Coincidentally, Mom's senior resident was a surgery resident I knew from residency and fellowship. After almost two hours the student nurse anesthetist showed up with a syringe of versed and said we were a go with a k of 3.5. all i said was high-five for 3.5. I found out 3 days later that there was still trace blood in the urine, but I guess it didn't matter. I hugged by dad and stepmom and that's the last thing I remember until 6 pm in the pacu.

The nurse kept telling me to quit crying and my belly would hurt less. I wanted to see my mom, but they said no. Apparently she was still intubated, and pretty combative herself. I told the nurse Michele that she was a very mean person and to get OUT. I was nice to my tech, Toni, who was nice back. The charge nurse, Randy came over to yell at me and tell me Michele wasn't mean, but he was FOS. She was mean. Lots of people are teary as they come out of anesthesia, that doesn't mean you should be mean to them. Thankfully she was a rare exception to a generally kind group of doctors and nurses.

Anyway, I did finally get to see mom in the PACU before I went to the floor. She was still intubated, I guess because she was acidotic, but she was able to communicate. That night on the floor I stayed in bed. I had 3lpm NC and kept desatting to the 80s, I guess from sedation and mild OSA. At 6 am, my nurse came in and took out my foley, took of the nasal cannula and I walked (without assistance!!) to my mom's room. She was pretty chipper and quite pink from the 3 units of packed cells (her pre-op crit was 24, but they hadn't planned on txfusing her because they didn't want to expose her to more antigents). Matt stayed at her bedside all night long, and then heroically drove to Essex to feed Ally and let her out.


I was discharged on post-op day 2 in the care of my brother, Matt. He and I went on a trip to the grocery store, then home to my house on the bay. The next morning we picked up Dora from the kennel at Rocky Gorge, and I started to try to get back to normal. The first two nights my aunt Kathryn cooked fabulous dinners for me, and the third night my friend Alexa brought her two adorable kiddos and an excellent black bean lasagna. Now it's post op day 6, and I'm off the oxycodone, taking tylenol only, and thinking about driving to the hospital to see my mom. They said I could drive in a week, and technically the week is up today! We'll see, first I'm planning a test drive around my neighborhood.


Thanks so much to Dad, Matt, Chris, Kathryn, Heidi, Grandad, Cathy, Carol, Trisha, Teddy and Bill for visiting :) It was great to see all of you.

Thanks to ALL of the Zimmers/Franks/Fleishmans/Spencers/Leibels who sent Mom and I each our own beautiful arrangement in our favorite colors (the bouquet is the lovely white and purple arrangement above).

Thanks to my fellow fellows for the bouquet you sent me, I loved it!

Thanks to Kathryn and Heidi for the cheerful daisies and colorful houseplant for my new place, they're both great! Also, thanks for bringing dinners to me, they made my day.

Thanks to Alexa, Aiden and Sam for bringing a delicious dinner, and wonderful company. A special thanks to Aiden for the beautiful handmade potholders he brought--they're brightening up my kitchen already.

--Sarah

back to square 1

We got a call yesterday at about noon about what sounded like a good cadaveric kidney that mom's nephrologist recommended we accept, but no further instructions. Initially, it sounded like the kidney would have less than 12 hours of "cold time" which is very good. However, we called the transplant division back at 6 and at 9 pm, and they finally told us to come to the hospital at 11 pm, and the surgery would either be overnight or first thing in the morning.
We waited, and waited and waited. We waited at home, in the admitting waiting room, and finally in a telemetry bed on 3D. At about 9 am the OR transport team showed up to take mom to the PACU, leading us to believe everything was ready. However, as mom was being wheeled out on a stretcher, they got a call not to bring her. No explanation. The only person who ever knows anything is the attending, who is almost never available. Finally at about 10 am Dr. S arrived. It turned out the initial biopsy of the cadaveric kidney was insufficient but had signs of significant long standing hypertension, which could significantly shorten the useful life of the graft. A this point there was still a few hours left until the kidney was 24 hours old, so we elected to re-biopsy the kidney while Mom had an ultrasound of the iliac vessels where the kidney would be attached.

The repeat biopsy came back with some signs of hypertension, although with much less severe damage than the initial biopsy had suggested. However, at this point, Dr. S had told us that the medical history of the patient was not very comprehensive, and there was no way to get more information. At this point, Mom, Nathan and I talked and we decided to pass on the kidney and continue with our original plan for a living related donor transplant on 7/2/08.

It was not an easy decision for any of us because there isn't a crystal ball to tell us what the future will hold as a result of our decisions. Lots of tears, especially since we hadn't eaten or slept all night. In fact, it was Wednesday and I hadn't slept for more than two hours since Sunday, because I was working nights. After our last all-nighter in the hospital, I bought a Coleman air mattress and a pump and stored it in my car. It was definitely more comfortable than a chair or the floor, and I would definitely recommend it.

Now, I'm reviewing my schedule to see when I can pay back the fellow who kindly and generously covered my Tuesday and Wednesday night shifts.

The only outstanding issue prior to our transplant 7/2 is whether or not the transplant surgeon will require mom to get an MRI followed by dialysis prior to the surgery. I truly hope not, because I believe that benefit of the diagnostic information does not outweigh the risks of the study.

Well, take care blog readers, and we'll update again as soon as we know more.

Sarah

Here's Mom on the phone with the transplant division. Looks like we have a possible match for a cadaveric kidney. We're going to UMMS at 11 pm to be admitted for heparinization, and to start immune suppression. As soon as we know more we'll post. We love you all!!

Laura and Sarah

A day at the doctor's

Mom and I went to Dr. Zimrin's office on 5/23/08 for a hematology consult. Dr. Zimrin is mom's regular hematologist. The transplant surgeon wanted her advice about mom's anticoagulation pre-op/post-op. It was a pretty fun day. First we stopped by Hopkins (my work) so I could check on an experiment in lab and get my annual TB test read.

Then we motored over to UMMS. We parked in the Redwood garage, and mom walked all the way to the Weinberg cancer center. Then mom had vital signs and we went to an exam room. Much to my surprise, my friend from medical school, Amy K. was our fellow. I was completely reassured. Amy is a very intelligent, but also very kind woman. Going with the small world theme, she knows Bev, a nurse in the NICU where I work. Pretty funny. We talked with Dr. Z and Amy about our concerns regarding the MRI, and they recommended we talk to the transplant people. I'm working on a letter to email them, because that seems to be the most reliable method of communication. I'm going to finish it by this weekend.


After our appointment, we went to Donna's for lunch. Much to our surprise, mom's friend Amy is now the manager of the UMMS Donna's. They were really happy to see each other. Mom met Amy 5 years ago, when she worked at the Donna's in Columbia. We were glad to hear she delivered a healthy (but ornery :) ) baby boy, who is now 13 months old. Very kindly, she made our lunch complimentary.

Next we dashed back to my house to wait for the stove repairman, who fixed the electrical part of my *new* stove. We got the stove back in October, and about a month ago the electrical element caught fire. I quickly turned of the electricity to the gas stove, worried that the gas line could explode, and the fire went out. Apparently the position of the knobs on our fancy stainless gas stove allows water in, which shorts out the electric. Next time, buy a stove with knobs on the front. Live and learn.

Mom got to spend time with her grand-dogs, and work on her knitting. Then Nathan came home and we had Indian food leftovers for dinner (yum!). All in all, a very nice day.

Sarah

Weekend update

laurapreston2005 said... Today is Saturday, 5/17 and for the first time this week I have the energy to do the exercise video I use as part of my wgt. loss program. I have a list of things to do but am purposefully only going to do the most needed items (like tackling 2 days of dishes). I am trying to learn the "pace myself" mantra so I don't get to the point I was at on Wed. night where I didn't have the energy to even cry (as those of you who know me, I am an easy crier). Any way, Sarah has started the Preston/Skelton countdawn to 7/2-in my case 7/1-it's about 7 wks. away. Today I am in a good place and am looking forward to ditching the exhaustion the seems to be my nemesis.
Laura/Laurie/Lori/Mom

Happy 32nd Birthday to Sarah a day late!!

Posted by Laura on May 16, 2008 11:55 AM




We started celebrating on Mother's Day and wrapped (a movie term from Matt) yesterday. Fun was had by all. Sarah received lots of lovely gifts and Nathan surprised her with a video camera-She wants to film the kidney saga-however I'm undecided about that at the moment.




Laura

PS.. Sarah is modeling a Laura Preston original scarf.

Our Surgery Date

Is July 2, 2008 at 7:15 am.

Still no news

Well, we don't know anything new this morning. Apparently the possible cancellation on Friday is still up in the air. Wish we knew more.

Moving forward with the transplant

Greetings blog readers--

Dr. Phelan consulted with some other specialists, and after reviewing my results, has given the go-ahead for a donor nephrectomy.

Now, Mom and I are waiting for an official OR date. It may be as soon as this Friday, May 9, 2008. We'll know more this week.

Take care,
Sarah

no news is ???? news

Theoretically, the transplant folks met 2 days ago, but we still don't have a decision about whether or not I'm healthy enough to donate my kidney (a problem with my history of kidney stone and my urine calcium level). I'll let you know when we hear...
-sarah

Guts on film

Here's a photo of Sarah's kidneys from a spiral CT.

The light blue arrow points to my left kidney, the teal arrow to my liver and the green to my right lung. Pretty odd seeing oneself from this perspective.

Smile :)

Here's a funny picture from our one night stay at the hospital 1 1/2 weeks ago...

We were pretty surprised to notice that the pillow case on Mom's bed at the University of Maryland was actually from Doctor's Community Hospital, in Lanham, Maryland. Mom worked as a registered nurse in the ER at Doctor's.

Happy Birthday, Kathryn!!!

Today is my aunt Kathryn's birthday, best wishes for a great day and I'll see you tonight!

In unrelated news, here's the kidney update...

I sent in my urine this morning to check the calcium level. I expect the results by Tuesday, which is coincidentally the day the transplant committee meets. Hopefully we'll know by Wednesday if Mom and I are a go for surgery. Matt is sending his blood in on Monday to check the antibody status. In the meantime, we're evaluating offers of cadaveric kidneys as they come in, and we'll re-evaluate our openness to that option on Wednesday.

The weather in Baltimore is beautiful, sunny and warm. Mom is continuing to do a great job with her diet and exercise. She had an ankle injury last week that seems to be healing well. Work is very busy, as usual, working on a new set of experiments and attending in the Hopkins newborn nursery (where the heathy-ish newborns reside). Nathan is working hard, too (starting at 5 am some days) at his new company. Ally and Dora are eating too much of the spring grass, causing me to run around the yard in my pajamas yelling at them to spit out grass. At least it gives the neighbors something to laugh about, I guess. Matt is working six days a week on his current film, "When in Rome," a Disney production and riding his new bike to work in Brooklyn.

-sarah

home again

we're home, with only 4 kidneys between us. the cadaveric kidney was not up to snuff, a problem with the flushing procedure when it was harvested. we have to schedule an MRI with dialysis as an outpatient for mom, and i have to do another 48 hour urine. that's all the news that's fit to print.

limbo

mom and i went to umms for our "final" testing today. i still had one test pending, my 48 hour urine collection. we found out tonight that it was abnormal. my doctor wants me to do it again, but is in now way certain that the repeat will be normal. for now, i am not approved. we will not be having surgery 4/23.

then mom got a call tonight. someone died at 5:30 am today (4/15) and a kidney was offered for donation. they are doing a cross match right now, and we're waiting for the results. we should know in a few hours. we will try our best to update this site as soon as we know anything.

keep us in your prayers,
love,
sarah

the urine's in the mail...

well, i completed my 48 hour litholink urine collection, and mailed it back to the company yesterday. it was pretty fun, carrying a jug of pee around the icu during my week of 14 hour night shifts. i'm going to call tomorrow and try to get them to put a rush on the results. less than 2 weeks until surgery day...

i'm off this weekend so mom and i are planning to go shopping for fun things for our stay at chez umms. perhaps fuzzy slippers and matching house coats. don't want our hineys showing in the skimpy hospital gowns. i ordered us matching bags online but they're backordered until 4/23 (ironically enough).

on monday we meet with dr bartlett, mom's surgeon, for the first time. we've met with 3 surgeons so far. mine, and 2 others that work at the transplant division, but aren't doing our surgery. we're making a list of questions for him. tuesday is pre-op day, and an appointment with the anesthesiologist(s).

on a completely un-kidney related note, i'm really thankful that this week of nights is over. i haven't seen nathan since last weekend and i really miss him. the dogs, however, are in heaven--they're only alone for a few minutes in the morning and an hour in the evening.
sarah

day of a thousand tests

First, some very good news--Mom had blood work 4/1 and there wasn't any worsening of her BUN/creatinine, so there shouldn't be a need for dialysis before surgery.

Nathan and I spent Thursday 4/3 at the hospital for more donor evaluation testing. It was a very long day, and started early in the morning.

The first order of the day was a CT-angio. This is a special scan to evaluate the number of arteries and veins connected to each kidney. Usually there is one of each, but some people have more. Mine are normal with one each. The technician thought he saw a stone on the scan, which brought on an awful sense of dread. I had a kidney stone in 2003 and if I had additional stones on the CT I would likely be excluded from donating.

Next was an appointment with a social worker for an hour, followed by more blood and urine tests. Nathan and I (and two other potential donors) met with a nurse educator. She told us some more details about the surgery process. Then I went to a different building for a chest x-ray. Since I was at this hospital for medical school and residency (8 years in all) I knew how to get a copy of my CT scan. I used Nathan's MacBook to go view my scans--no stone that I could see. Finally at about 5 pm we met with my surgeon, and he agreed, no stone.

However, he was concerned about my history of a kidney stone. He ordered two 24-hour urine collections to make sure there are no metabolic reasons I would form more stones in the future. Having a kidney stone could be more dangerous in a patient with only one kidney, if it wasn't treated expeditiously. I'm working 6p-8a nights all week, so it looks like I'm going to be carrying a big jug of urine to the hospital...
Sarah

and the winner is...

Well everyone, we have a donor. My results came back yesterday and mom does not have antibodies to my blood. We are so relieved. Although I'm not a perfect match, I'm thankful that Mom won't have to undergo plasmapheresis.

Surgery is tentatively scheduled for 4/23/08, and I have my final work up on Thursday, April 3rd. This visit will include CT-angio scan, chest x-ray, more blood work and urine testing, meeting with the nurse educator and transplant social worker and a doctor's visit with my surgeon. We may try to change the date to 5/2/08 because Nathan has a huge deadline at work on 4/30/08 and I'd like him to be at the hospital the day of my surgery. That change will depend on Mom's blood work next week.

This whole thing is starting to feel so real... I'm thinking about which pajamas to pack for our hospital stay, and whether I should bring my regular or my electric toothbrush. I wish the dogs could come with us--maybe I can buy "Seeing Kidney Dog" vests for them online :)

I think Ally (my nine year old Rottweiler) might actually thinks she's qualified to do the surgery because she's spent so many hours studying with me over the years.

Special thanks to Deb in the living donor office for putting a rush on my bloodwork. It feels like every day counts at this point. I should also mention that everyone at the transplant office and in Dr. Light's office has been very helpful and very understanding. Their empathy is really appreciated.

Take care,
Sarah

Welcome to our blog

I thought it might be helpful to have a website updating everyone about how thing's are going with Mom's health. This way you won't have emails clogging up your inbox, but you can check in on how we're doing whenever you want online.

Good news and bad news, I guess. Surgery is tentatively scheduled for 4/23/08, however we don't have a definite suitable donor.

As you know, Matt and I are undergoing the work up to donate a kidney to Mom. We have the initial results of our blood work. Matt and I are both 4/6 HLA matches (tissue type).

Unfortunately, Mom has antibodies that attack Matt's cells. This "cytotoxicity" index should be less than 49 and it was 104. These antibodies can be a risk factor for rejection of the kidney, requiring that it be removed and Mom start dialysis. The risk of having antibodies increases with subsequent transplants. We are waiting for my results for this test.

Mothers often have antibodies to their children because while they are pregnant a tiny amount of the baby's blood can cross the placenta through small breaks. We're certainly hoping that Mom doesn't have antibodies to my blood. To receive a transplant from someone to whom she has antibodies she would have to undergo a relatively invasive procedure called plamapheresis. Unfortunately, this procedure isn't a complete fix, and her body can still make new antibodies after the procedure.

On a more humorous note, March is National Kidney Month, and the Onion had a hysterical (but kind of gross) video: Anonymous Philanthropist Donates 200 Human Kidneys To Hospital

Tomorrow I will start two weeks of NICU service, followed by a week of night shifts, so I'll post more as time allows.

Take care,
Sarah