I think part of my brain is still in shock! I stayed up til 9:30 tonight doing whatever I wanted because I can. I haven't done that in years. I still look at my stomach and am amazed that there is a kidney in there....and it works! I don't know how long it will be before it actually all sinks in and feels normal. All I know right now is I like this new life that as been given to me. I feel like I just got out of prison or something. I spent the evening in Lindsey's room hanging out with her and her sister. Everytime I look at Lindsey, I see this glowing circular object hoovering around her head. I still can't believe she did this for me. I love the way my body feels and that just feels good! Once all the extra caths and tubes are removed, I know I will feel even better! I feel so good, I might just make Chris take me shopping tomorrow!!!
Will def being getting out of hospital today. Hope everything goes smoothly. I will be back Friday to have the foley cath removed.....YAY and also have the Hickman cath removed out of my chest/neck area and have my port which will be my permanent way of getting soliris placed. So, its time to start packing up the hopsital room and get ready for the hotel! Maybe I can spend some time with my sweet Lindsey before she leaves. I am trustung in God that even though I am nervous, He knows whats best and if it is time to go, then it is time to go! I will leave after my Soliris treatment today!
I am either going to have to figure out a way to change the name of this blog........or start a new one with my new life!
Today might bring changes. Doctors were talking yesterday of possible discarge from hospital. I still won't be free to go to Arkansas but I can at least get out and enjoy Iowa...which is a beautiful place. I think this part of Iowa is one of the U.S.'s best kept secrets.
Why amm I nervous to leave hospital? I still have a foley cath placed. My bladder hasn't had to work in two and a half years so it needs time to catch up and remember what to do. I also have a drain coming out of my side to drain off fluidand lyphmphatics from my abdomen. Both of these tubes are really uncomfortable and I would like to see them gone asap, but I want my bladder and abdomen ready too. Also, my hemoglobin is on the low side. It might just be from the surgery but I would like to see this number climb. So far it is holding steady. I might have a small amount of hemolysis go on as well. Ths is not a good sign but it could also be from the surgery itself. I would just like answers before I leave the safety net of the hospital, doctors and nurses! On the bright side, my creatinine is 0.8. When I entered the hospital it was like 11?? This is just proof at how awesome Lindsey's kidney is. My blood pressure is running slightly high but we think with time it will level off to a regular and normal number. All I can compare this to is having to leave the hospital with your newborn for the first time. I want to protect this new kidney and will at all costs. It is so precious to me and I have been so blessed to recieve it. This whole experience has been amazing and def a God thing. I got a healthy functioning kindey and two new sisters out of the deal! Lindsey and Heather have been wonderful to me. I am adjusting to the antirejection meds pretty well. The first day of the steriod was a doosy. I thought I was losing my mind, but high levels of steroids will do that to ya. I got a massize 500 mg dose in the operating room. Everyday they are slowly decreasing the amount of steriods in my body. I am also on anti viral, antibiotics and anti fungals because I am now more suseptible to germs while I am immune compromised. I have made many new friends with the nursing staff here. They have all taken such good care of me. I couldn't ask for better nurses. These nurses are def the creme of the crop! Dr. Alan Reed was my transplant surgeon who, guided by God, performed this miracle inside my body. Dr. Thomas has been dealing with the aHUS end of the issue and doing the soliris treatments and plasmapheresis. I do have another soliris treatment today, so lots to do before d/c. I am so thrilled to be this far in the recovery process. I can walk with minimal pain. I do have a 10 pound limit on what I can pick up and hold. So it will be a while before I can pick up my sweet Madeline, who by the way is coming to visit me Friday! I haven't seen my baby in 3 weeks!!!! I am ready to get back to Arkansas and start living this wonderfully healthy life. I promised Madeline I would get well before Kindergarten and I am so glad I was able to make good on that promise. Oh and food, my appetite isn't too crazy from the steriods. I like to eat anyway, but for the first time in 3 years, I can eat pretty much whatever I want and drink way more than 32oz of liquid a day!!!!!!
Life is def moving on up and I have Lindsey Rouse and her supportive friends and family to thank for it. Lindsey, I hope to honor you by the way I live my life. I want to be a witness to others and plan on paying it forward. You are an angel and a hero. And I know you were just doing what God wanted you to do, but it still takes an AMAZING person to listen and actually follow God's will. I love having you as a sister and will forver cherish our relationship! xoxo
So much to blog about. But for now I will just say that this second birthday, second chance at life is so amazing! Urine never looked or smelled so beautiful before. I cannot thank Lindsey Rouse enough for her sacrifice and gift. She is truly heaven sent! All I can say right now is the KIDNEYS ARE INCLUDED!!!!!!! And working beautifully. My creatine is 1.6. The day of surgery it was 10-12!!!! My bruising is gong away and I haven't vomited once since recieving my new kidney. The pain is pretty intense at times but I'll get through it. It is all worth it! I can live a normal life now!!!! xoxo
It's the eve of my second birthday and I am full of peace. I know tomorrow is the bgininng of a great new chapter in my life. I thank you with all of my being Lindsey Rouse! Here are a few picks from plasmapheresis yesterday. I will be updating the blog as I am able! Keep those prayers coming for both Lindsey and I!!! Talk to yall when I have a kidney!!! xoxo
This is the week! WooHoo! Excitement is lingering in the air. I am not really nervous. I have the ultimate faith in our God, who already has my life planned out. He is in total control. He has lined everything up for me for this to happen. It is crazy to go back in the past and think about how decisions I made years ago have played a huge role in this whole chapter of my life. But that is how God works. He has our story from start to finish all mapped out. I just have to stay on course. I also have some of the best transplant surgeons and nephrologists in the country working on me and Lindsey. So I am not afraid. I am a little nervous to wake up in pain and have to deal with recovery but that will be short lived and a very small price to pay for the freedom and life I am getting. I can't wait for Lindsey to get here. I am ready to spend a little time with her before the BIG day. I am also a little homesick. I miss my baby and fur babies but they are all in good hands! Thank God for good friends and family! Tomorrow is my last easy day. I just have to go to the hospital to get my catheter flushed. Then we are free until Tuesday when things get crazy busy again with treatments.
This coming week is perhaps the biggest week of my life...besides getting married and having a baby! All are life changing events. I am so excited to get it behind me and start the recovery process. So far this is what next week looks like:
Wednesday-Pre-Operative Surgical Consult with Dr. Reed
Thursday- At hospital bright and early to prep for TRANSPLANT!!!
Friday- Recovery begins
Yesterday was a rough and packed day. I had to be at the hospital at 10am to begin plasmapheresis. It was a 3 hour treatment. It went smooth until the last 20 minutes. They had to stop the machine bc I starting feeling sick. Then they kept me there for about an hour which made me late for my next treatment. Got to my next treatment in the infusion center and got my first dose of soliris. The treatment only took 35 minutes to administer but I had to wait an hour afterwards for possible side effects. I did not have any! YAY!!!! We were at the hospital for 10 hours! Got back to our hotel and starting puking. So then I started dialysis for 9 hours. So I had treatments back to back yesterday. My body was worn out! I did get to see Dr. Thomas who is one of my main doctors. He is a nephrologist who is coordinating my schedule. He is an awesome doctor!!!!
Today at 7 am we were at the hospital waiting to get a cathedar placed in my neck/upper chest area. Surgery didn't start on time due to a staff meeting. Finally at 8:30 they took me back. My surgeon was only 27 years old! I thought doctors were suppose to be older than their patients??? Guess this is a sign that I am getting older! Anyway, the cathedar was placed in my internal jugular vein. I am very sore and it hurts on my right side. I feel like I've been hit by a truck....but it is only temporary pain. I had a ton of labs drawn today but they can use this cathedar to get them so no more sticks!!! Tomorrow I have plasmaphersis at 10am. That should last 2-3 hours and then at 1:30 I have my first soliris treatment. And then more labs...Will try to update how tomorrow goes. Thanks for all the prayers! Keep praying please!!! xoxo
Just 12 days away now. I am starting to feel a little nervous. It comes and goes. I am more worried about my baby and my fur babies than anything else. I have only been away from Madeline when I was really sick and I was too sick to realize it or how long I had been gone. This is different. I have my wits about me and I know I am leaving them all behind. But everyone is going to be with safe people that I obviously trust with my most precious possessions! I just need to relax and enjoy this experience. I guess nervousness is normal. I feel confident about the surgery and everything medically. I just will miss my baby girl so much. But I keep telling myself I am doing this so I can be a better mom to her. We have so many things in the future to look forward to. All day today, I keep staring at her. I just want to soak up as much of her as possible. Hopefully I will make a super fast recovery and can get back home to her. I love that baby girl so much!
Just spoke to Iowa. Apparently after two doses of meningitis vaccine and I am still not immune! My titers showed that I am only immune to 1 out of 4 strands. So I am asking everyone to say a little prayer that this doesn't cause me problems. My transplant coordinator said we will proceed with transplant and everything else and they will be monitoring me very close.
Today I got to say good bye to the doctor and nurses who have been keeping me alive and well for the past year and a half. Now that it is almost over it seems to have flown by....but it really didn't! Thank you to Dr. Deogaygay for your excellent care, Sharon for being the best PD nurse a dialysis patient could have, Sandy and Trinae for being there for me and Carol the dietician who kept me in check with my diet. Also thank you to Cindy who always helped me when I had an issue. I will miss seeing you but glad I don't have to come back. I'll just drop in and say hello when I am in town! Love to you all!!!!!
Well, another kidney walk has come and gone and it was a great success. My team "Kidneys Not Included" raised close to $8500.00 and we won first place in the indivual fundraising category!!!! I have to brag and say our Arkansas team blew Tennessee out of the water! It was a great but HOT day. That 2 mile walk felt more like 200 miles in the 100 degree weather. But it was all for a good cause! Thank you to everyone who helped, donated, fundraised and walk! I appreciate you all!!!!Here are some pics
I cannot believe it! June has arrived and in 22 days I will have a healthy, functioning kidney! This has got to be the most exciting thing in my life....besides the birth of my child! I am so ready for June 23 to get here. I am like a kid waiting on Christmas. In less than two weeks, the process will begin. I have to do several rounds of plasmapheresis and Soliris treatments to get my body ready for the kidney. I pray those treatments go well. Plasmapheresis and I do not have a good history but maybe things will be different this time around. I will be so excited to see Lindsey in Iowa. To her, I am forever grateful! Please keep Lindsey's family and my family in your prayers over the next few weeks and months. I know I have lots of prayer warriors out there and I am really counting on you!