8/21/15 Visit

I know I am months late posting but I  finally have some time to  catch up.

Since my last post a lot has happened. My manager resigned from the bridal store. I was soon promoted to manager and was crazy enough to take on a second job with the owner of the bridal store at her home health care business. That didn't last long though. A few months later I resigned and am back to being at home. However, I have seemed to stay just as busy.

We celebrated my one year heart birthday in Orlando Florida. Where my parents surprised us with a water park, sea world and bush garden tickets. It was probably the happiest I had been in a long time. My whole family came. All the siblings were together and it was the most fun. I rode lots of roller coasters and went on a bunch water slides. I am very lucky to have such a supportive family. I love them dearly.

                                                              Celebrating 1 Year










Sibling Love







Dewon and I have also decided to adopt. So, after a month of paperwork and home visits we are officially home study approved. We are working with an agency now to be matched with a newborn, hopefully soon! Shout out to my previous manager Candi who helped us through the process. Now we wait, which we are very used to doing.

We went on family reunion cruise with Dewon's family. It was a lot of fun. Plus, my first time being able to leave the country in over six years. However apparently I had too much fun because when we got back I was admitted to the hospital. I couldn't breathe well and was told I was retaining fluid again. A few days of lasix and rest and now I am back home. Back to life as we know it.



Back to my August visit. This trip was different. I went by myself. Dewon had to work so I went alone. However, my donors mom came into town and we got to share more of her son's memories. She also was kind enough to accompany me to my appointments the next day. It was good for my soul. I got to read cards and learn more about the people who have his other organs. It's amazing how many people he saved and helped. He is a true hero in my eyes. My appointments were the same and they seemed to go by quickly. My biopsy was easy and the results were good. They tweaked a few meds and I was on my way back home.

Well that pretty much sums up life to this point.

6/17/15 Biopsy

This visit was not exciting like the last one. We flew in and rested for the night after getting dinner from the hotel restaurant. The next day we went over and labs and tests done. We went up to the cath lab and I went in around 9 am. It was sweet and simple. I got to see "Iron Man" that's what I like to call Doctor Hanna. He reminds me of Robert Downey Jr to me. No problems getting in my vein this time so that was awesome. We then went down and seen the nurse. Ms. Alex seemed happy with my recovery. She just told me to keep up with working out and eating well. I am not happy I have not lost much weight from the prednisone but I am happy to say I have not gained any extra. You have to count the small blessings. That night she called me and said I got another 1R on my biopsy. There was a slight problem though. My white blood cells were low again so they stopped my Cellcept and also lowered my Prograf. I guess my Prograf levels were too high as well. I was upset though because
I have to maintain the same amount of prednisone at least until the white blood cells come back up. Hopefully, they will come up on their own because those shots I had to take before were very painful. I try to think positive though, I am still healthy and alive. Plus I have gotten my low white blood cell count before so I can do it again.

On a side note I have been working for over a month now. I love the job and my manager. Plus we just got another employee and she seems nice as well. I work my butt off but it keeps me busy and I enjoy it most of the time. I am lacking on being a great friend, daughter, family member period, and wife. Between Dewon's busy schedule and now mine we have limited time together. I know that all the hard work will pay off soon though. Right now I am in a great place in my life. I pray that things can only continue to go up from here and I continue to stay healthy. I thank all of you for reading and for all the support and prayers. God bless!

5/5/2015 Biopsy

For this visit I was extremely nervous. See, I was planning to meet my donors family. I had spent days before looking for the right cards, a stethoscope and just praying the visit would go well. I was terrified I would say the wrong thing and make someone upset with me. Plus I was bracing myself because I was not sure how I would feel and I didn't want to cry. After all it was them who had lost their loved one. On top of that the hotel we normally stay at lost our reservation so we had to find a new one that was not close to the clinic at all. We made it to Cleveland though and the hotel was nice.

The next day we got up and got dressed. Called a cab and headed to the clinic. All the tests were the same and by now I know everyone's name and I get in and out quickly. I went upstairs and waited for them to call me for the biopsy. When I went in all I was thinking about was when they are done I will be headed to meet my donor's mom. That quickly changed when they had a little problem finding my vein and keeping it open. Apparently, it likes to collapse now. They did though and it was over and done with before I could think too much more about anything. We then caught another cab and headed back to the hotel.

Greg's Family and I

Once at the hotel we decided I had better eat something and try to calm my nerves. I text the donor's mom to let her know we were back at the hotel and waiting. I ate half of a sandwich and waited. The family finally made it there and I waited by the elevator. Dewon kept telling me to calm down. I guess I was pacing a bit. When the doors open and I seen my donor's mom I instantly felt at ease. I know it sounds weird but I did. We all sat down together after introductions and his mom gave me pictures and books to look at. Her son, Greg, was so young and handsome I might add. I go to hear stories from her and his siblings, who I all met. It was honestly one of the most amazing experiences. It was like we were family. After we all chatted a bit his family took turns listening to my heart. I grabbed Greg's mom's hand when I seen her eyes start to fill with tears. It was just an instant instinct. I was happy that for that moment I could give them a little bit of the person they were missing. I think about Greg all the time. I wondered about the person he was and who was important to him. His family was gracious enough to shine light on this amazing person who gave so much to so many people at the clinic that day. Then I asked how he had passed away. I seen tears start to form in everyone's eyes and I though well I am asshole. His mom told me though. He had committed suicide. I was heart broken for her. I wanted to comfort everyone but had no idea how. It seemed unfair at that moment that I had this new life and was able to live when they had all lost someone they loved and cared for. I admired them though for the courage to tell me and for how strong they were. I don't know that I would do if I had lost someone in my family. It all ended with tons of pictures and hugs. It was an awesome day for me and I hope for them as well.

Dewon, Greg's Mom and I

The next day I got the call from Cleveland. Good biopsy results again. My biopsy was a status 1R, which meant I could move down on my prednisone again. 7.5 mg...YAY! 
So the same day I got home I went in to an interview after I showered and got all dressed up. I interviewed at a bridal shop. I didn't really think I would get it since I had no bridal experience but decided to try any way. I wanted to work again and get out of the house now that I was doing so well. I was surprised when I was offered the job on the spot. The manager was so nice and the shop was so pretty. I remember thinking wow, I am so lucky. What a week it had been.

update biopsy # 9

        I have been so busy and out of town so my update is late. Sorry everyone. Biopsy nine was simple. I had to do the same tests and went right into the cath lab. It was quick and painless. I love the doctor who does my biopsies, he knows how to keep me calm and get in and out as quickly and safely as possible. Plus Doctor Mountis was in the room, so that helped. After we went to go see the nurse coordinator. They decreased my prednisone again, yay! They also asked me to change my diet again because my cholesterol is still high due to the meds. So no more red meat for me, noodles, eggs or milk. I watch what I eat now and try to stay away from anything that has cholesterol in it. Overall a good quick trip.

I also got a letter from my donor family. It made me so happy to hear from them. I will try and keep you posted on what I learn about my donor if the family agrees. For now I am beyond grateful and happy that we can communicate.

update and biopsy number 8

While on a trip home to visit my family some blood work came back that wasn't good. They informed us that my white blood cell count was too low. We called a family friend & physician and he gave us the name of a wonderful doctor, Mrs. Lawson.
I got in touch with her office and she came in off of her vacation to see me. She explained everything to me did a quick exam and looked over charts from Cleveland. After speaking with Cleveland they decided to admit me to the local hospital in Florida where I would start a shot called Neupogeun. The shot would help raise my white blood cell count. Well after two shots it worked incredibly well. I have to say though it hurt like hell. My sides and lower back hurt so bad, but they did work and nothing drastic had to happen. Thanks to my mom and dad for everything during all of this.
My poor mom slept in a chair at the hospital where we got no sleep and dad held me as I cried because I hurt so bad. Thank you pain pills is all I have to say for that day.

biopsy:
Well another trip to Cleveland has come and gone. EKG, X-Ray, and labs. Biopsy was some what easy. They did have some difficulty though. My vein kept collapsing but they were successful and got the pieces they needed. Another easy trip accomplished. Although, when we got home my neck was killing me.

The results were 1R which is good. They decreased my prednisone again. Yay! Increased my prograf by .5 and my pravistatin because my cholesterol is high due to my anti-rejection medications. So Dewon and I are committing to a new diet and exercise plan to try and help as well.

update and biopsy # 7

In the past three weeks a lot has happened so let me start by giving you a small update. 
First, I started to feel different, almost like I was sick with the flu but I had not physical symptoms like fever or anything. I also had a faster heart rate. I could be any where between 90 to 137. So I called the clinic and at first they thought it was because my magnesium was low. So I went to the ER and they gave me IV meds to help. Meanwhile, my husband was out of the country for all of this so I was a nervous wreck the whole time. Thank God for my neighbor who helped me and sat in the ER with me. I admit I did feel better after the magnesium drip and my heart rate did go down but the next day the fast heart rate was back. Long story short, the clinic diagnosed me with CMV after blood tests were completed. So I was told to rest and start a medication called Valcyte. This medication I was on when I got discharged but they stopped it in November. Shortly after I started the Valcyte I got sick with a cold. Thanks hubby for bringing a cold home from work...  So I haven't really been doing much. I was told no exercise and to not overdue it. By the way CMV is a virus that my donor and I both had. It is dormant in most people unless you are pregnant or have a compromised immune system like me. It just makes you feel like you are sick and you don't have much energy. It has to be treated though because it can be life threatening.

So biopsy 7 was a breeze. I got all the tests done before like ekg and labs then went straight back to the cath lab. I was in and out quickly. I am becoming a pro at this. I then went to infectious disease where they tested me for the flu and went over what CMV was and their plan to treat it. Next was the CNP and he just went over all my meds and followed up with me. Lastly we seen doctor Mountis for a few minutes. She was extremely happy with how I was doing.

I got the call last night and I had another Zero on my biopsy. I have to admit I was so happy because I was terrified it might come back bad because I had been sick and tested positive for CMV.
So this is the plan:
-no more cellcept for right now. my white blood cell count is low so they stopped it until further notice.
-decrease prednisone to 15mg
-decrease prograf to 2 mg twice a day
-no more iron
-increase magnesium to 800 mg twice a day
-labs once a week for four weeks
-come back late February for next biopsy
-get a vitamin D test done
-I can work out again...yay!
All great news! I have decided that prednisone is the devil though! It is making my face so fat. I hate it but the doctor said it will get better as they keep decreasing my meds. I guess its a small price to pay when you have a great new heart.