Out of hospital

Hi again!

I just did my weekly update yesterday, however I wanted to let you all know that I was discharged this evening (Sunday) and got to come home. My fevers are low grade and although they will continue IV antibiotics, they're going to monitor me closely daily as an outpatient starting tomorrow morning. I'm just glad to be home and finally get a good night's sleep. As soon as I have a better idea of what my schedule will be like for the week I'll let those of you that would like to visit know :)

Erika's Treatment Update -- Week 11

Hi!

I'll start out by saying it's been a rough week so my apologies for being a little slower than usual on emails/returning phone calls. The beginning of the week I was feeling overly fatigued and disoriented which we found out was due to my sodium level being very low. When your sodium level drops it affects your brain function therefore you're not really yourself. Even having simple conversations can be difficult, which is what was happening to me. So all week I've been consuming as much Campbell's soup as possible as well as pretzels, chips, anything high in sodium. Finally Thursday my sodium started to climb back up (not at a normal level yet) and I began to feel better. I was so relieved, however that evening I spiked a high fever and had to be admitted to E1 yet again. Ever since then I've been back here at the hospital battling daily fevers. I don't know exactly when I'll be able to go home again, my fevers have to stay under control before they will even consider it. Because of my history of gaining so much water weight when I'm admitted, they're not hydrating me so it's up to me keep hydrated and continue the high sodium diet. I'm not allowed near water or any other clear liquids. I'm restricted to broths and/or juices, which I'm sure you can imagine how difficult it is to get 2 liters of.

I know several of you inquired about visiting this past week and I replied stating I simply just wasn't up for it, I hope you understand. I know things will get better soon and I will be up to seeing people again, but for now I just want to rest.

Hope you're all staying cool, I know it's been a warm last couple of days.

Erika's Treatment Update -- Week 10

Hi!

My apologies for taking so long to update this blog, I have received numerous emails/phone calls concerned about my condition since I went back into the hospital. Well I'm no longer there, I was discharged Wednesday, phew... My fevers finally went away on their own after my WBC started to come up, although for a few days I thought I would never get out. I'm still dealing with some other issues, but I guess the doctor's aren't very concerned. I got an allergic reaction to one of the antibiotics they were giving me and it just caused a nasty rash all over my body. It has gotten better, but it's still visible and it looks like I laid out in the sun for 24hrs w/out sunscreen. I also gained 20lbs (water weight) in the few days I was there from the hydration, being in bed, and that nasty cyclosporine. This has been the most difficult part, because I'm not able to move much and need assistance with everything from getting up, walking, etc. It's very uncomfortable and VERY unattractive. I even have to sleep sitting up (because my lungs were starting to get some fluid in them) and I have to keep my legs elevated. The trip to Stanford today was definitely an interesting one considering I can't stand up for more than 15secs. Fortunately, they're giving me all sorts of diuretics to try and help get the water out, but they're working very slow. I have never wanted to pee endlessly so much. Lucky for me, they're giving me tomorrow off (probably cause it's so hard for me to get there), but I will be back Sunday morning. The good news is that my counts are steadily climbing (WBC 2.6, HCT 35.1, PLTS 252) which is a pretty good indication that I'm engrafting! This is usually about the time transplant patients start engrafting so that is a great sign. Of course with this engrafment process comes some not so pleasant times like I've experienced the last week. The only other exciting thing I can think of is my diet is getting stricter by the day (not that I have an appetite)...low microbial, no dairy, and now they have added as much protein as possible. I guess the protein helps with pulling in some of the water retention and trying to get it out. My meal today: canned tuna for lunch, hard boiled egg for dinner...how exciting? I'm so craving an In N Out Burger or even better yet.....SUSHI! I swear I can taste the unagi & hamachi in my mouth without actually eating it cause I've been thinking about it so much. Not sure what the next week will bring, one day I'm fine and the next day I'm in the hospital so it's just a day by day situation. Thank god the Olympics are on to keep me occupied :)

Well all, hope you're doing well, you're always in my thoughts, especially through the difficult times!

Love always,
Erika

Erika's Treatment Update -- Week 9

Hi everyone!

Thanks for all the emails regarding my transplant and the pictures I posted. I was feeling great up until Wednesday evening when I got a fever. I've had fevers ranging from 100.5-103.0 since then and so they have decided to admit me back into E1 again. I spent the night last night and the doctors said today that I probably won't be able to go home until the fevers are under control and they try to find the source. I had some cultures done earlier in the week and this afternoon they will be doing a CT scan to see if they can find something.

If any of you are up to visiting me, I'm back in the E1 unit of the hospital, room #135. I'm not sure when I will be here until, but for sure through tomorrow. If you do decide to visit I would appreciate it if you could call before coming, my room phone # is (650) 498-3210.

Well that's it for this week, it started out pretty uneventful, however things always change so quickly! Hope you all have a great weekend, it looks like the weather is going to be beautiful!

Love,
Erika

Transplant Day!

Hi everyone!

I had my transplant today at about 12:15pm. It took about 45min to infuse and everything went smoothly. The donor had a great collection, so I actually received three times the amount of stem cells that were needed! I have attached some pictures of the procedure (you can click on them to enlarge). If you look closely at the picture of the red tube you can see some white stuff inside, those are the stem cells!!! It was so neat to actually be able to see them as they were working their way through!!

Erika's Treatment Update -- Week 8

Hi everyone!

Sorry for taking so long for an update, I wasn't feeling so well earlier in the week...

Yesterday I began taking Cyclosporine, which is an imperative drug to the transplant. This drug is given to all transplant patients (heart, lung, bone marrow, etc.) to lessen the chance of rejection. The problem with it, is it has some major side effects and is very difficult to tolerate for some people. Since my first dose I've been getting an extreme burning feeling in my chest, throat, fingers, and groin. Last night it was pretty intolerable and I thought Chris and I were going to end up back in the hospital or the ER, but I took some Benadryl which knocked me out instead. Today the doctor's lowered my dose in hopes that it will minimize the side effects so we will see how I do. This drug is usually taken for a year after transplant so I'm really hoping they can work something out.

Tomorrow I will spend the entire day at Stanford receiving two rounds of radiation, a 5-6 hour infusion of antibodies, and platelets. Friday is the BIG day...I will have my transplant in the morning. The procedure is outpatient and it takes about 2-3 hours. From what I've been told it will be just like getting a blood transfusion. In the next few weeks my body should start engrafting the new donor cells and on Day +28 (transplant is Day 0) I will have a bone marrow biopsy to determine if my body has fully engrafted.

Donor information that I know so far:

• Female
• 53 years old
• Located in Germany (not sure if she's of German descent)
• Blood type = A+ (I'm currently O+, but will convert to A+ in the coming weeks)

Thanks for all the emails, I'm still working on replying to a lot of them so bare with me. I don't have Internet access when I'm at Stanford as an outpatient and I'm there the majority of the time so it's hard to find time to reply to everyone promptly.

Love always,

Erika