Pete's Story

Pete
Age: 43
Married for 20 years
Live outside of the Minneapolis area
Children: Mario (9), Grace (6) and Miriana, (Born 12-1-04)

My Health History

I have a Dilated Cardiomyopothy with CHF. I was first diagnosed in October of ’95. As with most of the stories I have heard from younger patients, I was misdiagnosed all summer and was being treated for asthma. The allergist noticed that my heart had enlarged over the summer. The next day I was in the hospital for my first 8-day stay in the cardiac ward. I started to hear all those cool big words that heart patients learn. My EF was 10%, and the outlook was not good. In fact, after my angiogram the Cardiologist told my wife I could go at any time.

The beginning of November found me at the Heart Transplant program. I keeled over at the beginning of my first appointment and ended up back in the hospital for eight days. At least I got my kidney stones taken care of. Now I was waiting for a transplant. Things got pretty dull for a while. I laid around with little energy, waiting for something or other to happen. Not much did. Time goes by slow when you are waiting for your next set of tests. I did start to walk the spring of ’96, which was nice.

1997 turned out to be a big year. In March we were blessed with the perfect little boy you see in the picture above. It was the first time at my transplant center someone waiting for a heart had a child. I also heard about a new drug treatment from my doctors. It was the precursor to Coreg. I started therapy in May. When I was tested that fall it seemed that my heart was getting better. My last test had my E.F. at 25%. I can walk 2 miles on a good day. I am currently off the transplant list, but most likey will be back on someday. I had a Implantable Cardioverter Defibrillator (C.P.I. Guident 1782) implanted in May 1998, due to a Ventricular Fibrillation. It has not gone off yet. Check back for an update.

How do I take care of myself?

There are a few things that I feel have really contributed to my still being here. First is my faith in God. Taking your medications as prescribed at the times recommended is also important. Coreg has seemed to make a difference. I was up to 50 mg twice a day but could not tolerate it. I am now taking 25 mg twice a day. A strict adherence to a low sodium diet is also very important. Lowering my sodium intake has allowed me to stop taking lasix, which helps preserve the kidney. I have only one kidney due to a bout with kidney cancer at age 28. Most patients do not really attack the sodium in their diet, and they suffer for it. I also try to walk or ride an exercise bike daily. Remember that these are things that have worked for me. You should check with your doctor before doing anything different. I am also blessed with a fantastic wife, and a supportive family. Make sure you clearly communicate your needs and feelings to your support circle. Also remember that although you are the one with the health problem, they also suffer and need support.

 

---

 

Health Update - The Transplant

November 16th, 2005. Mary, my wife, was in Philadelphia for business, due to fly home later that night. She called that afternoon from the airport and jokingly asked if I received a call for a heart. The wait had been so long it seemed like it would never happen. At around 5:00 PM I was feeding the baby a bottle, trying to figure out what to fix for dinner. The phone rang. I had the baby so I was not able to answer it. Right away my cell phone rang. I had a funny feeling. I did not make it to that call in time. The number on the caller ID was the hospital. Then the home phone rang again. I picked it up with shaky hands. Susan was calling; they had a heart for me!

I cannot really remember the conversation. I knew I had little time to figure out what to do. First thing is to gather the kids and give them really big hugs. Then call my dear friend, Michelle and ask her to come help me. At that time I was thinking the kids could stay with her and I would drive to the hospital.

My next task was to try and contact Mary. She was in the air on a Northwest flight home. I ran to my computer and went to the airlines web site. I searched for a number to call and talk with someone. I called every number on the site but was unable to get anything but a recording. You can page someone at the airport, they do it on TV all the time. I wasted 15 precious minutes on that task. I then called my Mother in Law, explained what was going on and put her on the job. She took care of it for me. FYI, she called a travel agent friend of hers to contact the airline.

Then back to the kids. One look and I knew that I could not leave them at home. I also realized that I was way too unstable for driving. After another round of hugs and a few tears on my part I had them pack some suitcases. I threw my stuff together and grabbed some things for the baby. Michelle then arrived. I felt much better having her with us. Another round of hugs and talks with the kids. I was not saying goodbye, but the thought crossed my mind that you never know the outcome. I told my son that he was the man of the house for a couple weeks and to be sure and help out his mother. His sister also promised to help. The baby just smiled at me, she was only a year old I guess. They were all very brave and did a great job.

I had made arrangements with my Priest, Father Moriarty to meet anytime I needed so I called him on his cell phone. He was hearing confessions at St. Joseph the Worker Parish in Maple Grove, which happened to be on the way to the hospital. We loaded up Michelle’s truck and headed out. Michelle’s husband, Mike, met us in Maple Grove at the Church. Father Moriarty talked with me, heard my confession and gave me the blessings and rites. He is a great and holy man who had meaningful and helpful things to say. It was very comforting. Michelle went home to her children and Mike drove us to the hospital. It was wonderful to have Mike and Michelle there to help. We could not have done it without them.

We arrived at the hospital around 7:00 PM. Mike dropped me and the baby off at the door. The poor girl working at registration was a little thrown off. There I was, with a baby in my arms trying to convince her I was checking in for a heart transplant. During the process the other kids showed up and sat on my lap. We got through all the questions and forms. Susan from the transplant program showed up to help me upstairs. She let me walk up instead of ride in a wheel chair. I wonder if many other patients have walked in for a heart transplant carrying a baby in their arms?

Then up to the room. Susan brought me to Cardiac Intensive Care to get ready. Things were slow at first. I changed into those fun gowns, took my rosary out and started praying. The kids and Mike were down the hall in a very nice family waiting area. They had a computer, TV, snacks and comfy chairs. It helped the kids to have some distractions.

Soon the medical staff started rolling in. I was asked by what seemed like 10 different people the same questions. What is your name? How old are you? Are you pregnant or nursing? And on and on. Around 8:00P.M. they started poking things into me. It started easy enough, 15 or 20 vials of blood, an IV and such. Then the needles got bigger, went deeper and I started getting a little uncomfortable. I gritted my teeth and prayed more. Around 8:30 I had a feeling of contentment and relaxation, things did not bother me as much. I found out later that Michelle had organized a pray service/rosary for me at our home parish. A pretty good sized group was participating. The prayers begin at 8:30. Coincidence? I think not. Mary arrived at the hospital around 9:00. She was paged over the airport PA system right after she disembarked from the plane. She knew the reason for the page. I was so glad to see her, hug her and have her with the kids. Her mother was also at the hospital at this time and helped to take care of the kids so Mike could return to his family. Around 10:00 she took the kids to her house for the night.

Another visitor also arrived about that time, a friend of ours who is a nurse. She came down to make sure I was ok and things were on track. It was nice to have her around and explain things to us. The staff was great but they were busy. It is a humbling experience to have so many medical professionals working in the middle of the night just for you, not to mention the friends and loved ones helping and praying.

I met the surgeon, Dr. Kroshus, the head OR nurse, and the anesthesiologist who would be participating in the surgery. The anesthesiologist noticed that I was praying the rosary and introduced herself as a fellow Catholic. She told me she had attended Mass that day and felt very positive about my procedure. She prayed for me. She also knew my priest. It was a great experience having someone of faith recognizing the role God plays in our lives and her work. After a last hug and kiss for my wife I was wheeled down to the operating room by the anesthesiologist, with great conversation the whole time. This was at 12:05 AM on November 17th.

The next few hours are lacking in personal insights and feelings. I was sleeping peacefully. The surgery went very well. I went on the heart-lung bypass at 1:28AM and was removed at 3:15 AM. They were also able to remove my defibrillator which meant I would not need another surgery in a few months. At 3:45 a nurse reported to Mary that everything was going well and the surgery was almost finished. At 4:15 the surgeon gave my wife the report that everything went well and I was stable. He was very optimistic and mentioned it was one of the smoothest transplants he had done. A few minutes later the anesthesiologist came to see Mary. She also had good reports. She explained that she removed the breathing tube in the OR and that had not been done before as far as she knew. She felt inspired to remove the tube early as if by intervention. She took Mary down to my room to see me for a few minutes, at 5:10 AM. I woke for just a minute and was able to speak to her. I should say that I clearly remember saying “we are through round one”. Mary remembers some mumbling. What a blessing. That was a long night for my wife.

The next couple days ran together. I was in intensive care on pretty strong pain meds. Things were progressing nicely I guess. One complication was that I was going into kidney failure. The docs started talking about dialysis but I dodged it by a day. It was a side affect of the medication. I also developed prednisone induced diabetes. I was started on insulin and had to continue until around April. A great learning experience.

The thing that I really noticed was that I could really feel the new heart beat. My old heart ran at a rate of around 60 beats per minute. This new one was clipping along at over 100. And it was beating strong! I could feel my pulse in my toes. My toes had been cold for 10 years and now they were full to the brim with blood. Most visitors noticed better color in my skin also.

I was out of bed walking, not far and very slow, 3 days after transplant. I was doing laps around the hospital floor at a week. If not for the need to learn self administration of insulin, which was hard for me, I would have been out in 8 days. I ended up staying in the hospital for 11 days, over Thanksgiving. I had, and am still having great care from the staff at Minneapolis Cardiology and Abbott-Northwestern Hospital. I think the world of Dr. Maria-Teresa Olivari. She has been keeping me going for years now. Trust in your caregivers is very important and in her I trust. I once told her that if she recommended that mowing her lawn would be beneficial to my long term health I would be at her house weekly. Susan, one of the transplant coordinators at the program has also had a huge impact on my life. She is dedicated, intelligent and just a great person who is always there for me, both medically and with a smile.

Things have progressed well over the last year. I will not go into detail about all my doctor appointments, tests, prods, small illnesses and such. They are a small price to pay for the chance I have been given at a normal life, and not a price at all compared to what my donor and his loved ones have given up. I have been very lucky and blessed. I am sure God watched over me and has a plan for my life. I just need to recognize my vocation.

Going through a process like this is an ultimate learning experience. I learned how to cope, how to love, how to pray better and how wonderful the majority of people in this world are. The outpouring of help we received after transplant was unbelievable. Starting with Mike and Michelle and including the many people who made us meals, drove the kids around, cleaned our house, fixed and moved things around for us and gave me hugs and prayers. The list goes on and on. Every day I am thanking someone else who stepped up and gave so generously. Mary, my wonderful wife was thrust into the role of caregiver, single parent and worried wife all at once. It was very difficult for her and I appreciate all of her sacrifices.

Words often fail me when I am thinking or talking about the generous person who chose to leave the gift of life if tragedy every stuck. Brian was a 24 year old man. Although I never met him we have a relationship that is very special. A day does not go by that I don’t think of him, his family and his loved ones. I have written to, and have also received a wonderful letter from his mother. I pray for him and his loved ones every day. Please pray for them and for all organ donors. (written December 2006)

---

Health update Fall 2005

The only new thing is that I have had a sleep study done. I have mild Sleep Apnea which would probably not be treated if I did not have CHF. I am going to wear the contraption for 2-3 months and see if it helps. Sleep studies are very interesting things. If you get the chance you should have one done. Other than that I am active on the transplant list and getting by.....

Health update February 2005

Not much of an update. The only new development is that UNOS is crediting me with 900 days of waiting time from the first time on the list. That may bump me up somewhat.

Health update January 2005

I went through the 2 days of testing to be listed for transplant. They look at everything. Vials and vials of blood tests, pulmonary, ultrasounds, x-rays. I found out that I don't have a bunch of stuff wrong with me. I guess it is kind of nice to find out things are going well other places in my body. I qualified for transplant and am now listed. I decided that I should not work so much which is something my doctor has been telling me for years. One of my employee's, Michelle, is taking over. I will still be around and keeping this updated though. Now I can work a little, take care of the kids and work on getting better again.

Health update December 1st 2004

Ok, this is not a health update for me but Miriana, our third child, a wonderfull little girl was born. I did great! Oh, her mom did well also.

Health update November 2004

I got the whole battery of tests this fall. The results were not quite so good. It was not a hugh change but trended the wrong way. My EF was the same, but my left ventricle enlarged a little bit. My V02 fell to 15.9. 15 is the cutoff for transplant so I am getting close. My cardiologist suggested that I re-list for a transplant. She thinks I can get by for a while but should be ready just in case. Mary and I have decided to wait until January to do the listing tests being our baby is due December 1st.

Health update Summer 2004

Not really a heart thing but I did get some medical attention. I took a spill on an offroad motorcycle trying to keep up with my 7 year old. Big mistake on my part. I broke my shoulder and 2 ribs on the left side. I flew quite a few feet. Too bad nobody saw it happen. My son was a head of me so he had no clue. I drove home (5 hours) and than went to the emergency room. Not much they could do but give me some pain medication. My biggest concern was the AICD. The EP doc tested everything a took some x-rays. All the wires and the device seemed to be in place.

Health update Spring 2004

We skipped the tests this spring. Things seem to be about the same.

Health Update Winter 2003

I had an echo and the old tons of blood work. Everything is the same. EF still in the low 20's. I put on a little weight this fall and maybe have not been exercising as I should. I got the old standard, exercise more and watch your weight. My liver function was a little off so she dropped my cordarone back down to 200mg a day.

Health update Summer 2003

As those of you who read this section know I skipped the spring update. My tests were almost the same with my EF still at 21. Nothing to report but I guess that is good news. I did wear myself out a little teaching vacation bible school this summer. It was 1/2 day for a week. 6 sections, one right after the other. There was a video for part of the session so I thought it would be easy. I was way worn out by the end of the week and not feeling too well. I was having a bunch of PVC's. I had my defib checked and it was fine. The nurse did say I was having a PVC every 2-3 beats. I went into the cardiologists office and they confirmed that I was having a few too many PVC's. My Cordarone dose was raised to 200mg daily and after a few days I felt much better. Just a little more sunburn if I am not careful. I go in for testing again end of October-Early November. I will let you all know how it goes.

Health Update Winter 2002

Yet another CPST and echo the last couple months. First came the stress test. My score was back up a bit. The right way, but not as well as I hoped. My doc wanted to wait a while before doing an echo. I had it the end of december. My results were the same as before my new device. Oh well, stable is not all bad.... By the way, I have a fantastic Doctor. She is from Italy. I trust her fully. She talks to me and explains things to me. If I have a question on some new treatment or drug I read about she always has knowledge of it and an opinion. I really respect that. Get a doctor you are comfortable with, it makes a difference.

Health Update Spring 2002

I finally have my new electric friend. The FDA took a their time but finally approved the combination Bi-Ventricular pacing and defib device. I now have a Guident Contak CD Model 1823. The procedure went, well, interesting. It was supposed to take a couple of hours. It ended up taking 4 1/2. First they noticed that a muscle in my chest was being paced. They could not find the cause after checking all of the leads. It is a minor annoyance at times but no real big deal. They than thought they were done. The only thing left to do was test the device. Slight problem, it could not shock me out of fibrillation (fatal heart rhythm). They had to inplant what is called an array. They made another incision in my side and wrapped a couple coils around the back of my heart. It worked so I was on the way to recovery. A little sore in the side but OK. I had a check-up a few weeks later and the device seems to be working fine. They also checked my EF which measured at 25. Staying stable I guess. I am going to have a stress test at the end of the summer to see if the new device is helping me to improve some. Let's hope!

Health Update New Years 2002

I have some excitment brewing. My wife and I were taking a weekend to ourselves. We found a fun place to visit and were having a great time. About 5 in the morning I thought I heard a beep. It seemed to be coming from me but it couldn't be, right? A couple days later at home I heard it again. This time I woke up my wife (pretty brave, huh?) and had her listen. It was coming from my chest. I went in to have my defib checked and my battery is getting low. My docs consulted and decided that I qualify for the brand new bi-ventricular pacing device. The trials for the product went great, patients saying they felt better and had more energy. Sounds like just what I need. The catch is that it is still in the FDA approval process. Should be ready sometime in March. I am first in line to get one at my clinic. Now to wait.....

Health Update Fall 2001

My thrombus is gone, my thrombus is gone. Sorry, I just feel like singing. My echo showed that My heart was a little better than 6 months ago but not as good as a year ago. Just slight changes though. The important thing is that my thrombus seems to have desolved so I get to stop taking coumadin. Other than that my CPST was just a little better and my heart rate was a little better. Another 6 months before testing again. This fall is my 6 year anniversary of heart failure. Still kickin'

Health update summer 2001

I have been so stable the past year plus there was nothing to write about. Boring boring boring. That has now changed. I was very tired and it seemed like I was having more PVC's and my heart rate seemed slow. I was due for my annual tests so I let it slide for a month or so. When I had my checkup my heart rate was in the mid 40's. Explains my fatigue. My doc turned the pacemaker aspect of my defibrillator on and started to pace me at a minimum rate of 55. She thought it might be the Lanoxin, so I finally got to stop taking one of my many pills.

Then I went downstairs for my CPST. After the half hour of hooking me up and getting ready I rode the bike for a grand total of 30 seconds. My heart was going into runs of PVC's. Now I was getting a little nervous. My Cordarone dose was doubled at this time.

An echo was scheduled for a few weeks later. My doc wanted to wait and see if the pacing had any affect. When I had my ICD downloaded before my echo it showed that I was being paced 12% of the time. Not too bad I guess.

My echo showed that my heart enlarged just a little and my EF was about the same, measuring 21. The new twist was a possible Thrombus in my left ventricle. Oh boy, I got to start taking blood thinners.

I had another try at the CPST a week or so later and got through the test. My V02, which was in the low 20's, previously was now 16. Maybe the medication, maybe starting to slide again.

Retests will be in September. I am feeling better now than a couple months ago. I ride my bike 4-5 miles at a time and can almost keep up with my kids. My doctor talked about re-listing me for transplant this fall depending on the test results. We will have to wait and see...

Health Update February 2000

Big news this round. I have been taken off from the transplant list altogether. My EF is still stuck in the low 20’s, but my CPST tests have shown some more improvement. Get out there and exercise all of you. My doctor thinks that I may be back on the list someday, but I am stable for now so she thinks that may be at least 5 years down the road. I still have the same doctor, only now I am treated in the CHF clinic instead of the Transplant clinic. Now my appointments will not take the better part of the day, most of it spent sitting around waiting.

Health Update July 1999

I was scheduled for an echo, cpst, and right heart cath in June. I had the echo and cpst. My results were very close to the same as 6 months ago. So close that with the margins of error I was considered the same once again. The good news was being I was stable my doc told me I could skip the right heart cath if I wished. I was saying sure I will skip it over my shoulder as I was walking out the door. What a treat. No matter how many times I get that type of procedure I am still nervous. They seem a little easier, but not any fun.

It looks like my heart is as healed as it will ever get. I am remaining on the transplant list as a status 7. More tests in the fall, if I make it through the heat and humidity this summer. Take care of yourselves.

Health Update December 1998

I had an echo and a stress test. My results were very close to 6 months ago. My V02 was 21, from 20.9, and my EF was 25, from a 27. My doctor felt that with the margin of error the results could be considered the same.

I had some angina, increased palpitations, and felt generally fatigued for a month before these tests. I was having a lot of multiple PVC’s, so she felt that was my problem. She prescribed Cordarone 200mg.