Exit Consultation

Today we had our Exit Consultation with Dr. Holmberg. The meeting was a summary of what I had been through and all the potential problems that could come up post transplant and what to watch for. It almost sounds like the transplant was the easy part and now that they've totally beat up my body, it's open for a whole host of new problems. Thankfully, most of them have low percentages so we're keeping our fingers crossed that all goes smoothly. I will still have doctor visits weekly for the next couple of months. In addition, there will be tests done throughout this first year including several bone marrow, CT and of course blood draws. After that it will be yearly visits to the clinic for the whole battery of tests that I went through pre-transplant to monitor any changes. My blog postings will not be daily (or so) as they have been, but I will try to keep you all informed of how I'm doing. I truly appreciate everyone's thoughts, prayers, cards, emails and encouragement. I know you all helped me get through this ordeal. I especially want to thank all my caregivers and everyone that helped me out at my house and at work. We couldn't have done it without you all. And to Marc, it's been a hell of a ride and I've put you through the ringer and you were there for everything. I Love You!!

It was "Pulled"

Went to blood draw for my first appointment. Even though the nurses bring me back to do it, there is always confusion as to what type of port I have and Tim ends up being called and gets it every time! After that it was up to gynecology for my exit interview there - all good. Next came the clinic visit (and removal). My PA, Matt, is always amazed that I still answer no to most of the routine questions they have to ask. They have told me the problems I should have as a result of my trip to ICU, and I haven't had any (knock on wood). Time came for the removal of my line and he was he was going to pull it out. They protected the area on my clothes, snipped the stitches and told me to hum. I was a bit puzzled but they say it's a way they have found to keep people exhaling while it's removed. So Matt and I hummed for about 10 seconds and whaa-laa, it was out. He proudly tried to show it to me, but I told him I wasn't interested. Didn't feel a thing. All they did afterward was put pressure on the site for 10 minutes and I was free to go. Wow! One more appointment with Oral Medicine and I was released from them as well. Nothing tomorrow and on Friday I have my Exit Consultation with Dr. Holmberg. At that time I should be released from the (transplant) team but that doesn't mean it's over. I will have visits with my doctor weekly until at least the beginning of June. That in addition I'll have blood draws and bone marrow biopsies along with whatever else they throw me. But for now, I have no hardware in me and I'm at home. What could be better?

I'm REALLY home!!

Yesterday I got my IGG infusion and after all my concerns about the side effects (fever, chills, rigors - just like when I went septic and into ICU) I'm happy to say I had no problems! They're still having problems taking my blood from my new line, but my pal Tim in Blood Draw makes it work every time. After the infusion I had the dressing changed on my line and they told us we were good to leave and head home. So that's what we did today! It feels wonderful to be home but also I'm kind of restless with all the things I would like to catch up on. But I know I can only do very little at a time so I just have to keep reminding myself. Not only that, but I do a bit and I have to rest for a while. Tomorrow I have three appointments at the clinic and the plan is to take my line out. While that will be a good thing, again it makes me nervous that they will take it out without any drugs or anything. I say they're going to yank it out, Marc says they will remove it. We'll see......

Ready for Monday

Went to the clinic today and got my schedule for Monday. I will begin my infusion at 9am and should finish it by 3pm. Then I have a clinic visit as a follow up. Since it's dry and kind of sunny today we're going to try going for a walk across the street at Lake Union. I just have to remember however far we go, I also have to get back! Probably won't blog tomorrow so Happy Easter to everyone and thanks for everything!!!

Still Low

Our clinic visit today was good but uneventful. The blood culture results were still not available and would not be until later in the day. But all vital signs and lab results were good and stable. I got a call late this afternoon and got the word that my immunoglobulin number had gone down further. This means that on Monday I will get an infusion of immunoglobulin which has some unpleasant side effects some of which I've already experienced. They say it takes about 6 hours for the infusion which does not include the premedication process. Since I received this message on my voicemail, I don't know what the follow-up will be. I will be sure to call up there tomorrow to get the details, but it really doesn't sound like a big deal. We were hoping to be homeward bound this weekend, but will probably stay at the hotel until at least Tuesday just to be safe.

No News Today

Thought maybe today was the day they would tell me when I was getting released, but my clinic visit got cancelled. My doc called and said my immunoglobulin’s were lower on my last blood test and they wanted to retest and make sure they didn’t have to give me more before they pulled the catheter from my neck. So I had to go up and give up about 7 tubes of blood so they could run all their cultures and now I have a clinic visit tomorrow at 9am. I’m feeling good and antsy to go home. I would love to be home this weekend, but I’m not pressuring them. Yesterday we had a visit with the nutritionist and I need more protein which really isn’t a surprise. We’re eating a lot of beans and my diet is becoming more solid rather than the soups. After that was the Discharge Class – what a snoozer!!! The lady instructing basically lost the interest of everyone in the room within the first 10 minutes. Much easier to read the information than to listen to her for an hour!

Days are good

Sunday was another good day. Mary and Don came over and took care of me and my pump. I felt really good. Monday went in to the clinic early for a blood draw followed by a bone marrow biopsy. Thankfully that all went pretty smoothly. I had to go back for a clinic visit later in the afternoon but they had no news and all went well. Then about 3:30am today Marc woke up and found that I was warm. So we started taking the temperature which varied from 100.4 to 99.7 over a three-four hour period. Again I felt fine, just wanted to go back to sleep. Continued to monitor the temp throughout the day and the highest it got was 99.7. The clinic's marker is 100.4 before we are to call in and tell them what's going on. Hopefully we will have another uneventful night and I just have a couple of classes to attend tomorrow.