Monday, May 9, 2011

Recent Events - My Status

A lot has happened physically and emotionally, but people often only get bits and pieces. Then I get asked a lot of questions I think people always have the answers to, only to find out they don't...but someone else has the answers to other things! I'll do my best to summarize what I's been a while, so this is long, but the final requests are at the bottom as far as where I am now and what my greatest needs are.

A few weeks ago I started having a lot of problems with nausea, vomiting, pain, sleeping constantly, and diarrhea. Nothing had been changed, other than a very slight drop in my Cortef (steroids). After two trips to Hershey Med's ER for dehydration, I was admitted for a week for testing, dehydration, and malnutrition. I went to my doctor and found out I was running a low grade temp, something to be concerned about because it could be a sign of rejection.

After a week of testing, fluids, and a dose of sandostatin (octreotide) for the dumping syndrome, nothing new was found and they sent me home to manage the problems as usual. They encouraged me to go to Pittsburgh, but I really felt like I was just in a flare up and there wasn't anything new to be concerned about. Unfortunately, after just four days I was dehydrated again, in worse shape than I had been upon admission, and went back to my doctor. Once again, I was running a low grade fever. She said to call Pittsburgh. My mom did on the spot and Pittsburgh sent me to the ER with orders to have me transferred to UPMC from the Hershey Med ER. Unfortunately, in spite of what we told the doctor, he insisted that Pittsburgh had not made those orders and he was just to give me fluids and send me home. The next day, my coordinator called and asked where I was and what had happened. We told her what the doctor said, and she insisted that she absolutely did NOT tell him to not transfer me and to go back to Hershey and have my labs checked again. We did. I was feeling very sick and we waited there all day to hear back from Pittsburgh. In the end, they decided it would be safe for me to travel that day by car and come to clinic the following day.

On Thursday morning, clinic day, I saw Dr. Kareeem. He ran a bunch of blood tests and said it would be ok for me to go home for Easter weekend and return on Sunday night. He had my coordinator set me up for a week of testing the next week. This included a CT angio, biopsy, bunch of labs, and appointments with various doctors. I am severely allergic to CT contrast and had been scheduled for that on Monday morning. After learning of this, they decided to postpone the angio until Tuesday, give me lots of fluids, start me on prednisone for three doses, and IV benadryl an hour before the procedure along with more fluids. The angio came out BEAUTIFULLY! I got to see it in 3D on Thursday and the organs looked really cool! Dr. Kareem showed me my kidneys, spleen, stomach, liver, both pancreas', where the arteries were attached, and even bits and pieces of my old organs (which were definitely dead and ugly!). He said the images were so good and clear he was going to have a poster made for his office. He was serious too! Apparently I am going to be the second patient who has a big poster of my organs in his office!

Otherwise, we learned what I had suspected and the main reason I didn't really want to go back. Basically, I'm just dealing with the chronic stuff and there's not a whole lot they can's management and dealing with the flare ups as they come. He did increase my steroids for energy and started me on some other new things too. He decided to change my tube feeding formula to see if something else would help.

That was a tough week in other ways though. That week, on Wednesday, a good friend who was transplanted around the same time that I was made the decision that after 16 months in the hospital dealing with one horror after another, that she was tired of being so sick. She continued to get bleeds and they told her eventually they wouldn't be able to stop one and she would bleed to death. Knowing this, she didn't want to suffer anymore or die that way. She asked to be removed from the vent. Before they put her on the vent that Wednesday, she had talked to her mom about it and begged her to let her go. Then she called her dad and told him that she was ready to let go and to please start driving to Pittsburgh...that she loved him.

I went to see her on Thursday afternoon. It was really tough...she knew I was there, but she was kind of out of it too. I just really wished there was more I could do for her. I talked to her mom quite a bit...her mom has been a rock for Angie over the years and always by her side. I asked how SHE (Linda) was doing, and she said..."Carissa, she just begged and begged and begged for us to let her's been so long...she is so tired. I want to respect her wish." The family came in on Thursday and the final decision was made. The transplant doctors would have nothing to do with it, so the TICU docs stopped all the blood, TPN, fluids, dialysis, and all meds, except pain meds and sedation, on Thursday evening. On Friday Dr. Costa dropped by and was in tears. Around noon on Friday they pulled her off the vent and she passed within 30 minutes. They had music playing in the room at the time. Her mom was headed home to Ohio by that afternoon.

Upon Angie's request, she was buried in her blue jeans and with "Fuzzy." She was a tomboy and did not want to be buried in a dress! She was also an organ donor and reminded her mom of that, but unfortunately, due to all the infections her organs were not viable for donation. But, she gave back so much in others ways to all of us who knew her.

Her procession included her truck and her Stealth. 300-400 people attended, including nurses, doctors, and other transplant patients. Her influence on so many must have been clear! My friend, Jessica, also transplanted around the same time attended the funeral and spoke. Jessica, not typically one with a shortage of things to say, said it was the hardest thing she has ever had to do. Even though she had the speech written out, she couldn't speak...

That same night that Angie died, the transplant world lost another fabulous friend. Pauline Talty was a patient from Australia who was transplanted 19 months ago. She has been in the hospital more than out. She had been in the TICU in a coma for quite a while on a respirator. Unfortunately, there was no respirator strong enough to sustain her through her pneumonia. As they were attempting to put in an iron lung that night, she slipped away. Pauline's organs had completely rejected and her only option was another transplant. Dr. Kareem wanted to remove her organs and wait for new ones, but Linda (her mom) was not willing to make that decision and leave Pauline without organs when Pauline couldn't consent. In addition, Australia was not willing to pay for another transplant. They were hesitant about paying for the first and had to fight to even get to the states in the first place.

Pauline was a radiant Christian from Hillsong Church in Australia and I'm sure she met many other friends as she stormed through Heaven's gates that night, fully healed from her lifelong battle of health issues. Her mom, Linda, was also always at her side. I enjoyed our inpatient hallway conversations about the pointlessness of some of the things in the hospital, and Pauline gave me some hospital survival tips on the occasions we were in together.

We lost two beautiful women in less than 8 hours. It was one of the hardest days of my entire life...and obviously a really rough one for the UPMC transplant team too...the nurses, doctors, and all who loved, cared, and fought for both of them for so long...those who put so many hours into their lives and poured so much of themselves into each one. Needless to say, I was very depressed that weekend, but so thankful for my other transplant friends who were around that day so we could support each other through it...we texted, IMed on FB, and messaged each other to keep each other posted on everything...very tough...and I am so grateful for them and how close we all are. When one person has challenges or we lose one, it affects all of us equally...we are a family.

I've been home now for slightly over a week. I seem to be doing some better on the changes, but it's a bit early to tell. I did end up in the ER last Monday with a heart rate over 130 and low potassium and magnesium. Because I had just been released from the hospital, I talked to the doctor about taking the potassium orally with IV phenergan (to help with nausea caused by oral potassium) and avoid admission. They also gave me IV magnesium and fluids. My heart rate was so fast that in the ER they rushed me back so fast to a room and did an immediate EKG. They let me go home that night because they had managed to get my heart rate down with the fluids, potassium, and mag. We were worried about my long QT interval and history of cardiac arrest. I was dizzy, confused, sweating, and really weak when I went in. I felt much better the following morning. Once again, another LONG night in the ER as my dad and I got home around 5 AM.

I am eating some, or at least trying. It's not going well, but it's so important to keep pushing as much as I can. I have my days I really miss my g-tube in my stomach though for venting/draining and that's something I never thought I'd miss! It was just so much easier and pleasant to eat and know I could get rid of it without vomiting or having it hang around for days on end. I was much more interested in eating when I knew the consequences wouldn't be so bad for doing it! But it's something I didn't request of Kareem when he placed my j-tube because of the higher risk of infection. In the end, I might pursue it if this doesn't get under control and keeps eating up my life by being so sick and having to take phenergan (my nausea med, which makes me very sleepy!) all the time, but hopefully I can manage without going that route.

The most pressing issues are:

1. When I was having an endoscopy/biopsy done, the doctor must have either cracked or bruised a rib. I woke up from the procedure in a good deal of pain. Initially, I thought it was my typical liver pain, but it didn't get better and the pain only got worse. I also noticed the pain was more on my bones than anywhere inside. I have been in excruciating pain at times from it. Because i have osteoporosis, this is not necessarily surprising, but can be concerning as I am also on steroids and healing could be a problem. Since doctors don't do anything for cracked or bruised ribs anyway, I haven't been to get them x-rayed at all and am just trying to manage the pain. I am told it can take up to 4 weeks to heal, but am hopeful it won't take that long!

2. I just started my new tube feeding formula a few days ago. Pray that my body will adjust to the change. It's a slow process to switch because my body has been used to one kind, and now it is getting different nutrients. It's a diabetic formula, so we are hopeful that it will reduce dumping syndrome issues. It has fewer calories, unfortunately, but the hope is that if it doesn't make me as sick that I can orally make up for some of the lost calories. Right now I have to run it really slowly, and sometimes even stop it, because I am sick with the change. Pray that I don't lose much ground in the process of switching over and that this will help.

3. I am trying to get back into G-PACT again. I've been out of action for a while from being sick and there is a lot coming up. Please pray that I can catch up and get a number of big projects completed.

4. Although since Dr. K increased the steroids, I DO have more energy, I also don't like the side effects. They make me confused and moody at this level. Plus, they destroy my bones. The dose is very high! Although temporary until I get a boost of energy for a while, I am discouraged at being back up so high on them. We had been trying to come down. If this doesn't work, they will start me on Ritalin for energy. I may ask them to do that anyway. I would prefer a lower dose of Cortef and some ritalin than the side effects of the Cortef, even though Ritalin does some funky things to me too...they are more manageable!

5. I am trying to cut back on my nausea medication in order to keep from sleeping so much too, but my nausea is so severe. It's tough. I prefer to be alert and not dopey all the time, but nausea is tough for me...I can deal with pain a lot better! Unfortunately, my nausea meds are so limited. I am allergic to almost everything or they just don't work. Getting the dumping under control without aggravating the GP and CIP is complicated...but that's really the solution. Unfortunately, the right amount of sandostatin for the dumping is too much for the GP and CIP. For two years I have been trying to manage both, and it's been impossible. Please pray that some of the new meds will work. It's a new combination of things I am trying. I've taken them all before, but figuring out the doses so it's not too much of anything for either side is a challenge and something that will take a lot of trial and error...and even then, it's never going to be fully figured out because the GI tract is so complicated. As long as I can get it under more reasonable control though, I will be content.

Otherwise, things are going pretty well. I am celebrating my fifth transplant b-day (belated) on June 4th at the same time a friend is celebrating her 45th b-day. we have some fun stuff in mind! Nolan will be turning two this week and has started to talk quite a bit! He said "hi issa" today! He has the sweetest personality...such a happy kid!

I have been back at LCBC volunteering this past week quite a bit and plan to return to the Wheelhouse next week as long as my ribs are better. It's nice to be back. I get really bored and bummed out when I am stuck at home sick all the time!

Thanks for the prayers. In the midst of all this, God has been teaching me a lot. We're going through a series at LCBC that couldn't have come at a more perfect time. It's based on the book "The Land Between" by Jeff Minion who spoke at the Leadership Summit last summer. I bought the book then, but have just started reading it. The sermons have really been dead on each week in dealing with what I have had on my mind so much. Please read my blog from Saturday which expresses a lot of what has been on my mind as I deal with all of this...and so much more!

In closing, here are some of my most recent Carissaism's:

"With all the pain and all the tears, yet staying sane through all the years, I must be tough, I must still fight. Enough's enough, no end's in sight! I often feel like I'm so weak, I want a meal...too much to seek? I'll never stop my fight to "live," For what can top all those who give? Who've stuck by me through thick and thin, to make my life a win-win-win. I don't know why I have a chance, and when I cry, I also dance! Oh what an honor to be here now! Almost a goner I always WOW! There must be something I'm here to do, I hope I bring new life to you! My prayer is that God uses me, and as we chat that you will see, How God's great love is shining through, which I won't shove, but make anew!"

"Some people write & others speak. Some build & others destroy. Some see the glass as half-full, others half-empty. Many lead, others follow. Some are outgoing, others shy. Some are anxious, others calm. Some work ahead, others procrastinate. Some enjoy a busy schedule, others like to be free. We all have our differences. We don't always agree. But when we all come together, what an impact we can be!"

"The difference between Dreamers and the Achievers is like night and day. Everyone has dreams. It's the Dreamers who get out of bed every morning and work on their dreams who become Achievers."

"I have my ups and I have my downs. I have my smiles and I have my frowns. I know what's real and how I feel. I want to know when you are low! I care to hear about your fear. I love to read about your need, I want to pray 'bout what you say. When all is well, oh please do tell! It's part of life, the fun and strife! We all should care, feel free to share, do life together, good or bad weather. Fight through the storms and daily norms. Not feel alone, in laugh or moan."

"Tough times on the road of life are like mud puddles. They may slow you down and you may get stuck for a while, but w/ enough drive, solid tread and by putting all gears in motion, you will have enough power to pull out of it and continue the journey"


  1. I've been thinkging about you, the friends you lost and their families, and how it would be nice for science to catch up to prevent all of this. There isn't much I can do other then offer support, so know I'm here and willing to lend an ear. HUGs

  2. Carissa, I send you all my love and well wishes! Pauline Talty was a personal friend of mine - we both lived in neighbouring suburbs of Sydney and worked together for awhile too in my company. Pauline was amazing and is with us in spirit, as is your dear friend Angie as well.

    It's really tough losing those we love and are close to. Just thought I'd send you a message to thank you for sharing! I am thinking of you!

    Love and light,
    Ange xx