A powerful journey from living with an artificial heart to a heart transplant....

Monday, August 30, 2010

Patient or Family Member....

Last week I've seen the other side of the coin.

A very special family member spent some time in the hospital trying to figure some things out. In the beginning he was quite critical and now it seems that the answers are simple. He is being monitored and hopefully these incidents will not occur again.

I've decided that it's easier as a patient because I always know all there is to know. I have all the control. I make the decisions. As a family member I'm waiting on others to give me answers and I never hear it from the horses mouth. So it's difficult to understand what is really happening. I'm an analyzer and I think too much. I really need to stop that. Sometimes there are real answers and real solutions.

I hate to see others that I love in a difficult position. I feel so helpless and the only thing I can do is take my experiences and fight for what I think is right. Is it really right? Well I don't know... but I can do the best I can. I'm sure it becomes more frustrating to deal with family members like me than it is to sit at the hospital waiting for the answers themselves. My doctors and nurses will agree that I ask too many questions and sometimes I don't really need to know the ten possible outcomes or what-if's of a situation. That's just me.

Well my loved one is comfortable with the answers and so am I. I will be there whenever he needs anything and do my best to support his decisions. I'm not used to being on this side, so bear with me.

Monday, August 23, 2010

What's gonna work?

Today I was reminded of a theme I created when I was in the hospital last October getting approved for the transplant list and getting Vito implanted.

I got to Toronto General Hospital on October 19th after spending two weeks in hospital in Kitchener. When I arrived, there was a line up of people waiting to do tests and evaluations because they knew the doctor that sent me. He is highly respected in the transplant world and knows a critical situation when he sees one. The first person that greeted me in CICU was a doctor. That was nice.

Ever since being admitted I was tested for several things. I had x-ray's more than once a day, echos, ICD evals, ultra-sounds, blood work, and worst of all, they tried to put an arterial line in. This deserves more of an explanation.... An arterial line goes into the artery to get a more precise reading of blood pressure. That was the most important reason for me anyway, it's used for several things. To get the art line in they had to go into an artery deep in my wrist. I am already a very tiny person, my wrists are small, therefore my arteries are small. To top it all off, my heart was barely pumping and so it was even smaller. Four different doctors tried, all of different specialties and not one could get it in. They tried about 10 times PER ARM - EACH! I could not feel my hands until after my surgery. I couldn't even hold a cup. I rested my wrists on my bunny or blanket all the time. I needed a hot pad to keep them warm because they were so very cold. This was difficult for me, for my family watching and for the doctors and nurses. They really don't like to hurt patients.

So while they were attempting to get this line in, I would sing with my Mom or with my best friend Jenn to get my mind somewhere else. The louder I sang, the less it would hurt. So one song that I sang created my theme. (My nephew at the time was into Wonder Pets and we knew all their songs by heart, good pun.) We sang, "What's gonna work? TEAMWORK!"

I chose this song for more than the reason that I knew the words, I chose it because I couldn't do it by myself. I needed everyone to help me get through the difficult time. I was essentially dying. My skin went yellow, my eye sockets were grey, I was vomiting, I wasn't eating, drinking, sitting up.... I just laid there. Lifeless. I was even too tired to sleep. I few comments I got from nurses and doctors later, of course not at the time, were:

"You were sitting at death's door."

"You were hours, minutes away from dying."

"Your heart wasn't even moving."

Anyway, singing Teamwork gave me strength. I sang it when I went in for my surgery. Shaun and my family gave me all they could give and it got me through. It wasn't just them though. It was the teamwork of all the people that couldn't be there. I felt all the love and fought with everything I had.

Love and thanks to all my supporters!

Thursday, August 19, 2010

My anniversary present.....

In celebration of my 300 day anniversary, I have finally decided on a name for my LVAD. Are you ready for it? ..... Can I create some suspense first?..... A little anticipation?.......Are you sitting down?.... All right, here goes.... His name is...... (drum role, please!)........ VITO!!!

I chose Vito because in Latin it means life. That's exactly what it has given me. How appropriate. And it sounds good, Vito the VAD. Vito meet Ivan, Ivan this is Vito. Some of you may not know, Ivan is my ICD. We are all working together.

So from now on, if you see me refer to Vito, that is my life-saving LVAD.

Three Hundred Days

Wednesday, August 18, 2010

Status 4S

I recently learned something new about the status list for heart transplants. There is a new status created for patients with sensitivities.

Please keep in mind that I am not a specialist in this department and if you would like exact explanations refer to your medical professional. This is my interpretation only.

When a person is listed for a heart transplant they are rated at a particular status depending on their condition and urgency. Status 4 patients are in dire need of a transplant and the number goes down to Status 1 being the least urgent. I say "least urgent" but remember that those people are still listed for a heart transplant, so their situation remains significant.

In my understanding, all patients that receive an LVAD are in the condition of a Status 4 before they have surgery. I know that the surgeons wanted to wait about 5 days before implanting the LVAD in my case. They really only want a person to undergo 1 major surgery. Obviously, the VAD poses many other risks. I ended up only waiting 3 days because my condition was extremely dire. I expect this is the most common situation for other patients with a VAD.

After having the VAD implanted I am rated at a Status 3. My condition may seem "better" than others waiting for a heart but we must remember that the VAD has several potential life-threatening issues and my heart is essentially not working.

The new status is called 4S, for sensitivities. This is for patients waiting on the list that have antibodies. These antibodies are in women that have had children and people that have had blood transfusions. I am one of the lucky ones that did not develop antibodies after blood transfusions. As I understand, the donor's antibodies must match that of the recipient's. This is most often a difficult match. A recipient without antibodies can take an organ in both situations, from a donor with antibodies or without.

We are fortunate enough to have the technology at the tip of our fingers to determine what antibodies people have to give them the best chance post-transplant.

People with antibodies typically wait much longer for a transplant. That's why Status 4S was created. For example, if a heart becomes available that is suitable for donation a patient at Status 4S will be called as a first choice, probably without ensuring antibodies yet and a second patient that does not have antibodies will be called as a second choice. In case antibodies come up in testing, the organ can be implanted to the patient without antibodies, such as me. No organ goes wasted. If there was no Status 4S, that patient would not only have the wait the typical time expected for a heart matching in size and blood-type but also for a match with antibodies. A person with the Status 4S would also expect to experience more false alarms than a person without.

I hope I explained this properly. If you are a medical professional in this department and found that my interpretation is misleading, please make a comment. I appreciate your help.

Monday, August 16, 2010

A Normal Wedding for a Normal Lady

I went to a wedding this past weekend and it was absolutely beautiful! We were treated like royalty. The day was beautiful and the party was tons of fun!

Well, I got to wear something an LVAD patients longs for, and a normal woman often takes for granted. I wore a dress!!! That's right!! A dress!!!

If you can remember, the drive line for my LVAD exits at my abdomen. Making long shirts and dresses impossible. Well I took my dress to a seamstress and got a zipper put in the side. It starts from the top and goes down the side to close where my drive line can comfortably come out of my dress. I had to make the opening big enough to fit the controller because it NEVER can be disconnected. That would mean the pump would stop pumping. It's a very uncomfortable feeling, physically and emotionally. I am completely dependent on the pump.

I also found a black satin ribbon that I wrapped around my drive line. Since my purse is black, the white stands out. And the LVAD is going to the wedding too! It wants to dress up like me!

It was nice to go to the wedding and not be centered out about my illness. No one even noticed I had a big tube coming out of my side! I was even on the dance floor bustin' some moves!

Here's a couple pics.



Friday, August 13, 2010

Meeting Great People

From the outside, many people will say that my illness is a curse. I'm not convinced. I have faced challenges that have made me stronger in self and stronger in many relationships. I have also met some incredible people.

When I was told that I may need a heart transplant my Mom was connected with an old friend from high school that works with the transplant team in London. It's a very small world. It was this lady, Jane, that made our situation seem more hopeful. She was the first person that mentioned the LVAD to my Mom and told us to get to a hospital that could supply the life-saving device. Unfortunately, London has not accepted the LVAD into their hospital, as of yet. I was initially followed in London as an out-patient for a heart transplant but could not continue as a patient there for this reason.

Well we have been sending emails back and forth with Jane for a long time now and finally this week we got together. It was a wonderful visit! She brought her partner Bill Wohl with her, which was another wonderful surprise.

Bill is from Arizona and is not only living proof of a successful heart transplant, but living proof of the SynCardia Total Artificial Heart. I agree, I had never heard of it either. To briefly summerize, it is similar to my artificial heart but it is for the entire heart. Bill's heart was no longer in his body, this had taken it's place. That's what I said, no heart.

The SynCardia Total Artificial Heart was in clinical trials at the time Bill was supported and he was one of few to experience this device. The patient must remain in hospital on this heart because it requires close monitoring and it is very large.

In the states, recipients are allowed to meet their donor family. Something not accepted in Canada. Bill was connected with his donor family and has learned so much from this experience.

You can't deny that his story is interesting. Go to this link HERE to read more about the story and watch a FOX TV highlight.

Jane's story is a little different but there is certainly plenty to learn from her as well. It took specialists years to figure out that she was living with heart failure. She was told she had asthma for the longest time and took puffers regularly. This did not lessen the symptoms but she was lost at what to do. When the professionals finally determined she was in severe heart failure she was sent by air to London to undergo an emergency heart transplant. There wasn't a heart available for her at the time and so they administered several drugs. It was determined that since she had never been on heart medications before, they were doing great things for her. Jane was no longer in severe enough condition to require the heart transplant and she was sent home. Her left-sided heart function is now at about 25-30%. While she does not need a transplant, she continues with this severe lowered function. I know what it's like to live with 20% left-sided heart function and I was beginning to plan to change my life. There are many things that I just couldn't do. I didn't expect to go bike riding, canoeing, hiking, or even work full time ever again.

Jane told me that she would have preferred a heart transplant. There is no end to her illness.

While she is living with this barrier, she has shown me opportunities to make situations better. Jane became a volunteer with transplant teams and has made improvements to save lives. She is a wealth of knowledge in this area and I will look to her for advice and guidance when I pursue my interests.

It was a wonderful visit with Jane and Bill. I look forward to our next visit.

Wednesday, August 4, 2010

Turn down the heat!!

Since there hasn't been much drama lately, I thought it would be a good time to add in some excitement......

We had a normal day yesterday. We went for an interview at St. Mary's for an article to be in their Christmas donor letter and then went for groceries. I was feeling normal (whatever that means) until I suddenly felt really dizzy. So I laid down on the couch and expected it to pass. Well 10 minutes of laying down with my feet up did not stop the room from spinning. There were also palpitations along with the dizzy feeling. I decided to call my contact in Toronto to see if this is something I should be concerned about. Since the dizzy feeling has not been an issue for me before she decided it was reason enough to go see a doctor. I called my contact in Kitchener and planned to head in right away.

As I sat up on the couch to head to the hospital my dizzy feeling got worse. I was very concerned. Of course, there are crazy thoughts going through my head. If it was to be bad, it would be very bad.

We decided to call the ambulance to be put on a heart monitor and be in a controlled environment much sooner. They responded very quickly. We had to explain the LVAD and my experiences quickly with a lot of detail. It's funny how even firefighters and paramedics don't understand this device. It's just not common enough to invest the money into training people. I'm not sure if they realized they will most likely never experience an event with this device again. Shout out to the awesome response teams! You did a great job!

Anyway, they took us to Kitchener and I was assessed promptly. By the time I got there the dizzy feeling seemed to pass. They did blood work and took my vitals. The wonderful ICD technician analyzed Ivan (my ICD) and didn't find any events. This was comfort. The nurse that regularly follows me also came to see me. Once I saw her, I felt better. Even if a problem was to arise. I know I'm in good hands when I get to this team.

The team decided that there were no signs of significant concern. I was scheduled for an echo and a visit with my doctor today. This was scheduled a while ago. We were sent home, just thinking that things like this happen to people with heart problems. I guess I need to be reminded every now and again that I really am sick.

Today I had the echo and an appointment in Kitchener. My doctor was aware of the visit yesterday and he was able to explain what he thinks was the cause of my dizziness. First of all, my potassium was low. Potassium is very important for my heart. In the past I was extremely sensitive to low potassium. It was the reason why I would go into a serious arrhythmia for hours at a time. I'm certainly not that sensitive now but it could have contributed to my unwell feeling.

My doctor also explained what happens to me in the heat and when I exert myself. When a normal person experiences heat or exertion the arteries vasodilate in an effort to cool the body down. When this happens the heart rate increases to sustain a constant flow of blood through the enlarged vessels. Since my heart rate never changes but my vessels still dilate my blood flow does not remain constant. This could cause me to be dizzy or lightheaded.

So he told me to take an extra potassium pill today and to take special precautions in this heat and while I exercise. Avoid exercising on the really humid days and drink lots of water to keep my temperature under control.

I was treated very well through the whole process from the emergency response teams to the nurses and doctors at the hospital. I appreciate that they took my concerns very seriously and made me feel much better from just a brief visit.

And, of course, my amazing husband was calm and supportive through the entire event. He took great care of me and stayed by my side for every moment. I couldn't ask for a better man!

Monday, August 2, 2010

Focus On You Photography

Since I'm famous, I have some obligations.

Just kidding.

I was invited for a photo shoot session with a photographer my Mom got to know. Mom told her about my story and she was kind enough to offer a session to have a little fun. And it was definitely fun. She has a beautiful place in the Niagara area for some really great shots. I've included a few to share our fun and laughter.

I think the pictures really portray my connection with my LVAD. It's a part of me and there is no sense hiding it. I am proud and willing to show the world. Especially if I can make people laugh!

The pictures turned out awesome! Thanks Kim!

For more information on Focus On You Photography visit the website at www.kimcartmell.com.