Boy, looking back at my last blog, I guess sometimes you really do get what you hope for in life! Believe it or not, I got THAT phone call! My kidney doctor and transplant nurse both called to tell me that I have a live donor who will be giving me her kidney this year. I found out that she is a good friend of my brother and sister-in-law. She's just a 48-year-old average girl with four kids wanting to do something nice for someone else in the world, and something bigger than just a normal cash donation. Wow, whoever thought I could be on the other end of her generosity of her organ?
We are both very excited to meet each other but we don't want to jinx anything. I've been nervous to even mention getting a transplant at all, but I need everyone's help. I really need all my friends and family and neighbors to come together as this next year will probably be a very difficult one for me, at least the first six months. After talking with my brother and hearing about his experience, I learned your body goes through a lot of physical changes, mostly related to the post-op and medication changes. My doctors tell me I'll be taking about 40 pills a day, and that I'm sure is not going to make me feel my best. Until they get me to my right perfect dose for my body size, I'm sure I'll have my ups and downs, and that's what Jeff said is the hardest part.
Secondly, per the protocol at U of C, I will be required to personally travel there three times a week for the first three months after surgery. That will go down to two days a month and then one day a month once my dosages and labs are stable. I'm hoping this comes sooner than later as being blind requires me to get rides to all my doctor appointments. Just in the first three months alone, that's 36 rides. I can't expect my husband to take off 36 days of work, nor can I expect one friend to do it, and Tyler will be at college.
Perhaps I can ask all of you great friends to sign up for one day, and then I'll hire an Uber driver for the rest of the days. Please let me know if you are interested in driving and I will be happy to put you on the schedule or let you know who is in charge of it. This will start probably mid February as my transplant is scheduled for Feb 5 at U of C and I'll stay in the hospital for 10 days. (FYI, my surgery and these follow-up appointments will be at the University of Chicago, which is about a 1-hour drive from my house without traffic, and my appointments will be very brief, about 30 min. I'll just be getting blood drawn and seeing one of the nurses or doctors. I don't know what time my appointments will be yet but I can try to work them around your schedules.)
In addition to driving, I need everyone to come together and say their prayers for me as I've been very nervous about this whole process as it gets closer. As of now, it is 35 days away and I have 15 more dialysis days. As much as I'm excited, I am also nervous because I have a clotting disorder they told me could possibly cause problems during the surgery, which is very vascular.
In addition, I'll have both my kidneys removed the same day before transplanting the new one. That's going to be complicated by the fact that my kidney tumors and cysts are quite large and I have a lot of scar tissue built up from previous surgeries and radiation for the tumors, plus I had a punctured lung in the past that could puncture again. So, the doctors are willing to try to move aside and bag both kidneys laparoscopically. Then, to remove the bags without leaving any cancer cells behind, they will make an incision from my sternum down to my pelvis to remove both organs. If they have any complications, they will not move forward with the transplant. They will not remove the donor's kidney until they know I'm stable and within two hours of getting the new kidney put in.
The removal surgery itself will take 6-8 hours depending on the approach, plus they need two hours to put in the new kidney. If my blood pressure is not stable enough to have the new kidney put in, I'll have to stay in the hospital for a week and remain on dialysis for eight weeks before they can try again. I really need lots of prayers and good wishes for everything to go just perfectly on the first try, including before, during and after the surgery.
The good news is since it's a live kidney, it should immediately start to work, which means I'm immediately done with dialysis (or I may require just one more). They'll also pull the catheter out of my chest, which will be great as I'm so excited about taking a shower again.
The interesting part I find is the location of where they put the new organ: it's in your pelvis, not where your kidneys normally are. That's because there is nothing else in your pelvis that's in its way, so it's the most open area to operate without any complications of hitting another organ.
This transplant is coming at a great time because if there was no kidney to be had, I would be having my kidneys removed regardless because of my tumor growth, which would have meant a separate surgery.
If this girl backs out, or one of us gets sick, or something else happens, I'm also signed up at Madison, WI, and will start working on Plan B.
So, needless to say, my life has been somewhat busy due to the excitement of this news, getting ready for and living through the holidays, and preparing for what I have on my plate for next month before surgery. In addition to my dialysis schedule, I have to see the transplant surgeon twice in January plus I'll see anesthesia, hematology, endocrinology, and pre-op.
And then there are the eye appointments. I had done one cycle of Avastin injection and saw no progress, so I took a month off to see if anything would change. Unfortunately, my vision is still completely gone and I can barely see light perception at all. My retinal doctor decided rather than doing an invasive surgery, he suggests radiation to see if this could bring back some shadows. The problem is I need to go in for five consecutive days of radiation for two straight weeks, but I still also need to do my three days per week of dialysis and I cannot miss any of my pre-op appointments. So, my next month is just going to be critically busy. Good thing we got all the shopping, partying, and baking out of the way!
I am still waiting for that department to call and arrange the radiation to begin, but they would like to start it ASAP. I'm hoping to get it in before the kidney surgery on Feb 5. I have still have yet to see anything since the first week of August, which was two weeks after my dialysis began. I wonder if some vision will come back on its own after I stop dialysis? Hopefully it's not permanent damage.
Between all that has to be done, and the transplant getting closer, I'm getting more nervous and excited. I'm particularly worried about getting all the rides scheduled. I'm waiting to hear my sister Robin's schedule but I know she cannot come out in January at all. My brother Jeff offered to come but his condition right now is very poor with his own medical problems.
Regarding my recent brain scan and spinal cord scan (3.5 hours in the MRI), everything was unchanged and a-ok, which is great news. Once I take care of this kidney, really my only health problem is the blindness right now. Too bad they can't do dual kidney/eye transplants. Wouldn't that be nice?
It was great to see everyone this last month at the many holiday parties/dinners. Christmas Eve was spent with my kids watching all the old Christmas movies, and then Christmas day the kids woke up and got lots of wonderful gifts. They were both very happy with their presents this year. We spent the afternoon and evening at my cousin Curt and Kate's home in Naperville and had a big feast and dessert, played some games, and the kids even enjoyed the Jacuzzi outside in the cold for quite a while. It was really nice to catch up with everyone in a happy setting. The last few times were at funerals or something more depressing.
This break has gone by so quickly. Alyssa goes back to school on Monday and Tyler follows two weeks later. I sure enjoyed having them around again. We just went to the Trans-Siberian Orchestra as a family, probably a once in a lifetime event, and we're going to see Elf the play on New Years Eve followed by a neighborhood New Years Eve party. In addition, Sheila's family is in town from Atlanta for a few days. If all goes well, we plan to go on a ski/snowboard trip with the kids on Sunday. We've had such a warm winter but luckily the resort is making snow. The kids are so excited to go.
Thanksgiving was first spent in dialysis and then followed up with a very large dinner at my cousin Debbie's house in Lisle. No matter what anyone else said, I think I have the most to be thankful for this year. Thank you to all the drivers who have helped me since July to get me through my dialysis appointments three days per week. It really does not go unappreciated. A special thanks to Suzanne who always goes above and beyond getting me to dialysis but my other doctors. In addition to Steve, she is like a mom always checking to make sure I have food and other necessities in my house. I am so blessed to have her as well as everyone else.
My New Year's resolution is to come through the surgery with flying colors, and hopefully without whining and complaining too much to my friends and family. And without pain, of course. Hope you all had a very merry and wish you all a happy happy 2016!
