donor letter

So, I debated on if  I should share this part of my journey but I then remembered why I do this blog in the first place. I write down my experiences so that I can hopefully help someone else in the same position that I was in. So here is my letter. It took me awhile to write it because who really knows what to say to someone who has lost someone  they love? Although, I knew deep down that no matter what I had to let them know how thankful I am.

Something else I didn't share was one night I just broke down. I am so overwhelmed with how great I feel and how I was given a new chance at life but then it hit me how much my donor's family must miss their loved one. I grieved for them and vowed I would do everything in my power to take care of this new heart. I also shed tears because I just simply couldn't believe all I had been through and that I made it through. It was an emotional night for me and almost every day I think of my donor's family and include them in my prayers. I hope to hear from them soon.....

Dear Donor Family,

                Hello! My name is Carmen. I live in Virginia with my husband and two dogs. I was diagnosed with a congenital heart disease at 11 months old. My whole life I have been limited to what I could do. I have had many surgeries and procedures to fix and maintain my heart. Most of my memories from childhood are of hospitals but my dad tells me that I was a fighter and always made the most of the life I was given. About six years ago I was told that they could no longer maintain my heart and that a transplant was necessary in order for me to stay alive. So I finally found a wonderful transplant center in which I waited almost 5 years for a match.

In the meantime, life was hard. I could not walk very far without getting short of breath. I had constant occurrences of pain or passing out from simple daily tasks. So I thank you from the bottom of my heart for your generous gift. Because of your donation I no longer have to use a wheel chair, I can now exercise for the first time in my life, and I now have some sense of independence. It is amazing how much life has changed and how wonderful I feel. I hope to go back to school next year and pursue a career with the American Heart Association so that I can help others with similar heart conditions.

I once again want to thank you for donating your loved one’s organ. I am so sorry for your loss but I promise to take good care of this heart. My family and I are extremely grateful that I now have the chance to live a full and “normal” life.

                Sincerely,

    Carmen

biopsy number 6

So this was another short trip. Day 1 was easy. The only test I had was an echo. During the test however, I did cry a little at the sight of my new beautiful heart. It's function was perfect! Although I do think it will take me more time to get used to the sound of a normal heart. I am so used to the swoosh and thump beat I that I have had my whole life. Plus I had a murmur too. I am still in disbelief that everything is going so well so fast.
Day two we had the normal day. Admitting, labs, ekg, and x-ray. Then finally to the cath lab for the biopsy. It went really well and they even checked my pulmonary pressures and said that was good too. After I seen the CNP and this is the new game plan:
-back in three weeks
-decrease iron to one time a day
-decrease prednisone to 17.5 mg a day
-increase the pravistatin to two times a day
-end acyclovir med after December
-add lisinopril due to high blood pressures recently

They were thrilled because my heart was functioning great, ejection fraction was good and the tricuspid valve had settled and there is no longer any back flow from the new heart like there was in my old one.

They also want me to have another head ct, a sleep test and a 24 hour holter monitor test done as well.

So that's it! Thanks for the prayers everyone. We are home safe and I am ready for bed. Good night!!

Biopsy Number 5

Dewon and I went back to Cleveland for a check up and biopsy. We really should by now own part of the hotel and hospital as much money and time we spend there. We got up early and went over to admissions and checked in. Then the usual, labs, ekg, and x-ray. Next we made our way up to the cath lab. I was met there by Ms. Chris who told me I would be going in soon. So I took my meds and a pregnancy test then went straight to the cath lab. This time it went super quick. The doctor was excellent because before I knew it I was being taped up and was ready to go. Next we went to see the nurse who examined me. She told me I could drive again but only short distances for now. That I was healing well and I wouldn't have to come back for three weeks. I was so proud of myself because I had walked almost the whole day in the hospital and was not tired at all.

Got my results...and I got another Zero, No Rejection!!

Today December 4,2014 I exercised for the first time. I was able to do 2.3 miles in 12 minutes. I was so proud of myself. However, now I am tired and ready for a shower and bed. Yay, for my first of many milestones in my recovery with my new heart.

The Time Has Come...A New Begining

Carmen-

On September 22, 2014 at 4:15 pm I had got a call from the clinic in Dallas we were hoping would take my case and transplant me. Well on the other line the nurse told me that they had got the records from Cleveland Clinic and were not sure they could transplant me because of the high level of antibodies. They wanted us to be retested and send them the new results. I was crushed! I ran to Dewon and started balling, I felt as though our last hope was gone and that I would get too sick before anyone would be able to transplant me. I calmed down finally and started dinner to get my mind off things. Well, at 6:18 I got a call from Dr. Mountis at Cleveland Clinic. She said "We have a match" The heart is a good heart, young, and has one of the antibodies that I had. She let us know they still had to do more testing and that the heart was not ready yet. So we were to fly to Cleveland first thing in the morning. Tears started rolling as I told Dewon, I think I was also in a bit of shock because I fell to the floor and just looked at my husband. It was crazy how a few hours earlier I was loosing hope and now here it was, the time I had waited so long for. I first called my parents, as I am pacing because there are so many things going through my mind. Then Dewon made me stop and eat although I wanted to do a million other things. We then went next door to my neighbors and friends since high school and told them. The love and look on their faces just made it even more real and made me excited. The rest of the night was packing and little sleep. The next morning my neighbor took us to the airport and well that's all I remember...

                                                   Doctor Mountis (Transplant Doctor)

Dewon-

We arrived in Cleveland, went to the hospital and were admitted directly to the ICU. Carmen's mom and dad arrived. Multiple doctors came to visit and express how excited they were about how close of a match the new heart was. 32 tubes of blood were taken prior to transplant. As we waited in the ICU the time of the actual transplant was pushed back multiple times because of the testing they had to do for other organs from the same donor. It was not until around 3 AM the next day ( 24 Sep) that she actually was taken back for surgery. An hour later as soon as we got back to the hotel we received a call that Carmen was refusing to have the transplant..... When we arrived back to the hospital, the transplant doctor had apparently calmed her down enough to begin the surgery. Then around 11 AM we received the call that the surgery was a success without complications. A few hours later she was back in the ICU and we were able to see her. She had at least 9 IV medications pumping as well as a breathing tube. She was completely out and would not be able to really respond to us for at least a day and half. As time progressed they removed some of the medications. The more they removed meant the better she was doing. When it came time to remove the breathing tube, they removed her sedative and before they were able to remove the tube she had to be responsive enough to use a pain pump. Therefore move her fingers and toes. This took a while and much effort from myself and her parents to get her awake enough to do this. She would be responsive enough to hear us but not move her fingers because of the lingering medications. Eventually it wore off and they removed the tube. Two days later, when she was stable enough, they moved us to the step down unit.

                                                                My New Heart

Carmen-

I kind of remember my dad calling my name in the ICU and seeing my dad,  mom and Dewon. As hard as I tried I couldn't move my fingers though. The next thing I remember is waking up and seeing my family. I was so thirsty but all they would give me was ice chips. They tried to get me to stand but my feet were swollen and it was really difficult to put any pressure on them. The nurse stated I had to sit in a chair and eat something before I could be moved to the step down unit. So I sucked it up got in the chair with lots of help and ate a little.

Once in step down everyone took turns helping me and keeping me company which made me happy. After everything settled a bit we realized I couldn't feel my left hand and wrist which was really swollen. It was still really hard for me to stand and with only one hand impossible for me to do basic things. The doctors came in and spoke to us. They told me the surgery went really well and that I no longer had an AICD. They had taken my device out during the transplant but left two external wires just in case. They told me they thought my hand trouble was from being on the table so long. I would also have my first biopsy in a few days. The next few days were all about working on learning my new medications, what was safe and unsafe to do post transplant and getting used to my new normal.

My Favorite Nurse Coordinator

My first biopsy went great, came back with a big fat Zero No Rejection!!The next week was all about therapy for my hand and getting me up and moving. I started out slow and I didn't get very far but was proud I at least could walk. A lot of doctors came in and seen me, but I honestly don't remember everything everyone said. I do remember it being hard for me to eat because when they put the tube in my throat they hit the back of my tongue so it was swollen. They also said there was still a lead from my defibrillator in my chest that the EP doctors wanted to remove but the transplant team just wanted to leave unless it started to cause problems.

Biopsy number two was a little more difficult. Everyone knows that I am extremely anxious in the cath lab, but this time the resident doing the procedure didn't want to medicate me before. So we had a disagreement in the cath lab. She ended up telling me I was not being compliant, that the biopsy was part of getting the new heart, that basically I was not honoring the organ and not following the rules. I then went off, they called my transplant doctor and I refused the procedure. You should never talk to a patient like that, I always do what my team says and travel quit a ways to see them, and was doing everything I was told to insure my new heart stayed healthy. I couldn't deal with her trying to push me on to the table when I was told I would get my pre med, her talking to me like I was a terrible patient and endangering the organ. I have been with Cleveland for almost 5 years and when I go to the cath lab I get meds to stay calm and help the doctors out. Finally Doctor Mountis came and calmed me down, we got through the procedure and it was another Zero.

                                                                    The Cath Lab Team
The last few days in the hospital was all about getting ready to go to the hotel. They did however try to give me a drug to prevent rejection that would be administered through the IV for several hours but it made me shake really bad even though they premedicate me with Benadryl and Tylenol. It really scared me and I made them stop the medication. I remember crying and shaking so bad even though I was trying my hardest to stop and calm down. The occupational therapist also came in and gave me a brace for my hand and another doctor came in and removed dead skin from the back of my tongue where the tube had hit it. They also took out all the extra wires and stitches on my chest and the swan cath that was in my neck. It was all disgusting! I got released to the hotel, where I would stay until biopsy number 4.

The next week and a half was a lot of sleeping for me. We did however walk the halls with my therapist and I was able to climb two flights of stairs. We ventured out to eat but didn't go too far because I still had a lot of pain. Biopsy 3 was a One which meant little rejection, we were originally told a Zero but then it was clarified to be a One, which is still good to them. The day before my last biopsy we went to meet my surgeon. He was so nice and told me how well I did in the surgery. My fourth biopsy was another Zero and with that result we could finally go home.

                                                                     My Surgeon
                                                               
So now we are home and I am learning what is my new normal. I take meds at 8am, 12pm, 5pm and 8pm. I now have transplant induced diabetes so I have to check my sugars twice a day and take a pill to regulate it. I also check my weight, blood pressure and temperature twice daily too. I am still working on my left hand, I can now move it more but still have no feeling in it. I can walk more and climb my stairs at home although I do fall sometimes because my legs are still weak. I wear a mask when I am in public places to protect myself from getting sick, but at this point I think everyone thinks I have Ebola. I feel so much better now and can't thank my donor enough. However I do forget sometimes that I no longer have an AICD and when my heart rate goes up I still panic a little. My breathing I am still working on too. For so long I compensated and did shallow breaths and now with a new heart I can actually exert myself so my lungs are trying to catch up. So now I am impatiently waiting to fully heal so I can get back to "normal ' life and do all the things I could never do before.

                                                            All My New Medications

Questions I have been asked...

How long is recovery?  It depends on the person but most say 6 months to a year, although some have recovered quicker.
Do you know anything about the donor? No, the only information I was given was that the organ had one of the same antibodies I had and that the person was younger. I have written to the family and hopefully I will get a responce.
How do you feel? I feel so much better and more alive but at times I feel like an old lady. The medication I have to take to stay out of rejection is hard on my body. So I have a lot of aches, pains and well I nap every day.
Do you feel any different with the new organ?  No, I still feel like myself and my husband can tell you I still have the same Latin attitude :). I do joke that who ever had my heart before must have liked sweets because I crave pop tarts, doughnuts and cereal now.

                                                      Ms.Reese - Nurse Practitioner
                                                  She helped me through it all. Love her!

I want to thank everyone for all your prayers and support. I know I couldn't have made it through all of this without you. A special thanks to my parents and my husband who helped me through one of the hardest things I have ever gone through. Dewon I have a new respect for you and a deeper love. I don't know how you do everything you do. To work, cook, clean and still help me is a lot but you never complain and still love me through it all. I waited so very long for this and when it came I didn't know how to feel or what to think. Now I am beyond grateful and so excited for what my future holds. Wow, how lucky am I. Thank you God for blessing me!!

September 11 2014 Appointment

Before I get to my appointment let me share a few things...

First, for the past month I have called the Cleveland Clinic Coordinators and tried to schedule my follow up appointment. Every time I was told that they were waiting for Doctor Mountis to make a decision on what appointments she wanted me to have. So finally I received an appointment date but was told I would not be seeing Doctor Mountis, who is my transplant doctor and has been for years. I instead would be seeing Doctor Sterling, who Dewon and I did not like from the previous time we met him. So Dewon and I were very worried for what would come of this appointment.

So today we come over to the clinic. The lab was our first stop. I was so embarrassed, I am normally a pro at giving blood. This time however, I got very nauseated and a little faint. They also filled around 20 tubes of blood. We then grabbed an OJ and made our way to the Dental office. Everything was good there, I received my clearance and it was finally time for me to eat. After lunch we made our way to the transplant office. It didn't start out well considering we waited an hour for the doctor to come talk to us. When he came in he had no idea who I was or what the situation was. He asked for a minute to get a file off his desk and disappeared for another forty minutes. We were just about to walk out when he came back in. We talked for awhile and after a few tears and some answers we had been looking for we came to this arrangment.

I will be dual listed at both Cleveland Clinic and at a clinic in Dallas Texas called Baylor. The transplant doctor there is  from Cleveland and was a doctor with their team before I came to the clinic. We are in the process of getting all the insurance and paperwork set up so that the family and I can go and be evaluated. This clinic at present time has a ten day transplant rate. That means every ten days they are transplanting a patient. At first I hesitant because they were transplanting so fast but they have a high survival rate as well so that helped me feel more at ease. Doctor Sterling is the director of the program at Cleveland and after months of asking and being discouraged he finally broke everything down for us. He feels it is too risky to do the injections or to clean my blood because I can get an infection or sick easily with my immune system being down through the process. So that is why they kept offering me it and then taking it away. He said that Cleveland has a small donor pool, meaning they do not have access to a lot of hearts. Baylor in Dallas has a huge donor pool and one of his patients and fellow co worker just got a heart and only waited a few days. He himself could not produce anything for his friend and sent him to the same clinic he is sending myself. I know very little about the new clinic but plan to try and research as much as I can before we go there. I just pray they will take my case. It makes me feel very hopeful again and a little scared at the same time. I know I need this transplant, but at the same time I am scared of the unknown. I know I want to feel better and start a family with Dewon so I will just pray about it and keep moving forward.

So we are home now and waiting, as always, to see what the next step is for us. Prayers, warm wishes and encouraging comments are more than welcome. I am a bit frazzled these days. Thanks again for reading. Have a great weekend!

July update

Hello!

There has been so much going on I thought I would update everyone.

First I got an email from my doctor at Cleveland Clinic and they sent my case to Cedar Sinai in California to be reviewed. I was told through the grapevine that because my case was very complex, they were trying to see if someone else could handle it. The way I understand it is they are pursuing cases that they know will be a success and because my case is difficult they were seeing if another clinic would be a good fit for me at this time. Also, the clinic in California does more cases with high antibodies so this might be a good thing. They are still searching for a good match for me at Cleveland I am still be shopped around. At first I was pretty upset but now I am just letting God take control. If I am meant to be transplanted at Cleveland then I will be. Dewon and I are also looking into all possibilities and staying hopeful.

I also have been having some breathing problems lately. I have been to the emergency room a lot lately due to not being able to catch my breath. It has been very scary for me. The first time I was home with my siblings and friends came over to help but I just panicked. My lips were turning blue and Dewon wasn't there, which just made things worse. He really is my rock. Once they gave me some oxygen and my friend calmed me down things got better. The second time I was at home alone and I couldn't reach Dewon on the phone and finally called an ambulance. I felt so embarrassed. The EMT's were amazing though and got me some oxygen and talked me through it. It has really been freaking me out. Like I have said before I deal with chest pain and dizziness so much better than all of this. Not being able to breathe is one of the scariest things ever.

With all of this going on I have been pretty stressed and anxious. So I have been trying to stay busy as much as possible. I just feel like it's all too much at once and I am going to have a break down if I don't stay positive and active. So I am planning my birthday trip with Dewon to New York to see family and have our first real vacation together. The good news is I have had little actual heart problems. My siblings also came to visit and I was able to go to Six flags with them. That in it's self was a miracle. I was able to enjoy the day with them, and thank goodness I was approved for a wheelchair.

So that's it. Thanks for the continued support and prayers.

April 24th 2014 appointment

April 24th-

 I had my appointments with Doctor Mountis and regular follow up tests done. When I saw the doc she immediately noticed how bad I had gotten. I guess they didn't believe me when I told them I thought I was retaining too much and now having pain in my abdomen where my liver is located. She did a test and stated that my liver was enlarged and that she was going to put in for a CT and for me to see one of the liver specialist because it could be cardiac cirrhosis. We went back to the hotel after my appointment and called the family, this was the worse case situation and what we were fearing the whole time.. The plan was for me to come into the hospital the next day and have my swan cath and then get admitted from there.
April 25th-
Went to the cath lab, I was a little anxious but had some meds to help with that. A new doctor was doing the procedure so I felt super anxious that she would not know that I need someone to talk me through the procedure. To my surprise she had read my chart and walked me through the whole thing. It was the first time I felt comfortable and didn't want to punch the doctor when they stuck me in the neck. After, she told me I was retaining quit a bit and my pressures were high. So they got Dewon and off to the ICU I went.
We spent several days in the ICU where they gave me potassium, nipride and lasix through the cath line. Their goal was to get my pressures down and to get some of the fluid off my heart. In the mean time they scheduled my CT. The test was quick, but waiting for the results felt like years. In the mean time the transplant team came down and talk to us. They said there was some scaring on my liver but I had to wait for the specialist to come and give me the plan of attack and decide if I needed a biopsy. They also made us aware that if it was cardiac cirrhosis that would make me a double organ transplant and I would have to be reevaluated. I looked over at Dewon in tears and could see the anger in his eyes. See, the cause of my scared liver was all of  the fluid retention and we kept telling them I was getting worse. After the docs left we just sat there and had a good cry. This situation is already so stressful. adding more to the mix and even the possibility of the clinic not wanting to transplant me anymore just made our reality too much to bare.
Thank heavens the liver specialist came in later that night and told us there is some scaring but not enough for them to take any action right now. I would have to be followed by them though to make sure things didn't get worse. This news let us finally breathe again....
A few days later we went to a step down unit and was later discharged.

This appointment was one of the hardest for us. I think Dewon and I are both use to dealing with heart issues. Liver issues are a new thing, something we are not familiar with and something scary. I have to be really careful and try my best to keep the fluid retention down to a minimum. The more fluid retention means heart failure which equals more scaring and in turn means cardiac cirrhosis at some point. Heart transplant is already a lot to deal with I don't need to add to the stress.

update: A lot has happened since December...

Since my last post I have received more information and the case studies for the clinical trial they are doing at Cleveland Clinic. After reading everything, speaking with friends and family I decided I wanted to try it at my next appointment. This was all in February, we didn't go back to Cleveland as soon as we had all planned because of my husband's work schedule. Well March rolled around and Dewon came back from training. I called to schedule my follow up and to get put on the clinical trial for the time we would be in town. I was given a schedule and date for April 23-26. I hang up and shortly after the doctor running the case study calls to tell me that I do not qualify for the case study anymore. I actually never did qualify actually. According to her you have to start the injections 2 weeks post status change to a 1B or 1A. Since I was bumped up the middle of last year I didn't qualify. My heart instantly dropped. I did all the research and actually got excited for a chance to lower the antibodies, giving me a chance to receive more heart offers. I just broke down and just wanted to hang up. I asked the doctor why the clinical trial was even presented to me if I didn't qualify, or why no one called me and told me anything after we left in December. She stated that the trial was still new and that my doctor may not have had all the information. She also didn't understand why Dr. Mountis had not done any IVIG or the plasmapheresis to help lower the antibodies. On top of all that I found out my biological mother may have been on drugs when I was conceived. I of course can not prove it but I have heard from a few sources that this is true. At the end of the day it just makes me sick to my stomach that a woman can do this and not feel any remorse when you see your own flesh and blood struggle. My mother was never really around as I grew up so she never seen first hand what I went through or how I struggle now. It hurts to know that all of my issues could be because she was so careless. She has taken more than she will ever know away from me. I will never conceive, carry or deliver my own child. My life will forever be an uphill battle. Thank God I have an amazing husband, family and friends to endure my struggle and give me strength along the way.

On a positive note, I found a heart transplant group on Facebook and they have been wonderful. When I shared my story they were so uplifting and positive. I also made a few new friends through the page. One little girl that I just instantly wanted to help and be a big sister to. Through this journey it's so easy to get discouraged and I have found that God puts people in your life to help you get through the rough times. For that I am so thankful for all of my heart brothers and sisters and of course my friends who stand beside me no matter what.

In the process of all the ups and downs I decided to take a few courses to start a non profit organization and to also start writing a book. I by no means think I am anything special, but if I can share my story and it help someone else going through something similar, that is what I want to do. It's something for me to look forward to and to work on why I wait for a transplant.

Once again, thank you for reading and for your support. Until next time.....