Taking One Step at a Time
Posted by juliebernal | Filed under Blood Pressure/Heart Rate, Cardiac Pacemaker/Ablation, Recovery & Coping
Oct. 31, 2011
Just had surgery on Friday to place a permanent pacemaker under my right side collarbone to help with some of my heart issues. Time for taking it easy with limited use of my right arm – 6 weeks!
When I think about my life and who I am, I think about all the fun things I’ve done in my life, the things I love, the people who matter to me and the things I still would like to do. I live my life and get by, by getting excited about the next event that I may have planned, the next big idea for something creative or the next trip I may take to a new place. I’m always setting a time-frame for myself – pushing myself – even when it comes to things that may not be “fun.”
When it comes to being advised for a surgery, I’m not sure if it is better to have months to get myself ready for it or just days. When I have months to prepare I go through all the emotions – I cry, get mad, go through denial and then start to think about how I haven’t yet done everything that I’ve wanted to do. Then I tell myself I’m strong and I go into surgery feeling hopeful. When I only have a few days to think about a surgery I tend to find myself in a state of denial and ended up facing all the other emotions during recovery. It’s hard either way.
I felt I was doing good with my recovery from having my pancreas and spleen removed plus a transplant. Wow, that is a lot for one person to go through. And some days I am still shocked that this is part of my life. I started to feel like maybe I would be able to start working again. Then the next thing I know I’m stuck in bed for pretty much everyday for two weeks. Fatigued, dizzy and weak – I started to realize that it was a good thing I hadn’t gone back to work yet. My history involves having a heart ablation 11 months ago to help treat a fast heart rate. My heart rate used to jump all over the place and I had many days of being unable to walk, stand or even lift my arms. The ablation (burning spots on the heart) was a hard surgery for me. I spent a week recovering in the hospital from it (while having pancreatitis at the same time). I was happy I had it done because it got rid of the chest pain that I had been suffering from for over 10 years. But I was left with a very slow heart rate of 30-50 beats per minute. I thought I would need a pacemaker but I passed my stress test and was told that I was very out of shape and weak from my pancreas but my heart was working just fine. So my heart rate was increasing as it should with activity. My heart rate continued to stay low during my TP/AIT recovery but it wasn’t until 3 weeks ago that I started to get weak and dizzy from it. I was getting a tight feeling in my neck, it felt hard to breathe and I just felt like I needed to rest after walking. My blood pressure had been low too. Low blood pressure and slow heart rate with symptoms is not a fun feeling.
I went to see my cardiologist. I was thinking maybe I just had a cold, maybe that was why I was having a hard time. They did two EKGs on me. The doctor came in saying, “Looks like you need a pacemaker.” First EKG I went from 120 down to 31 beats per minute within seconds. The second one I was in the low thirties. I really wasn’t thinking he would say I would need a pacemaker but I already knew everything about what would be done – after all we talked about the possibilities of a pacemaker before I had my ablation, so I knew what to expect. It was just strange since I thought I had already made it passed the point of needing one. Weird how fast something can change on you.
So eight days later I had my pacemaker put in. Surgery went well. They kept me overnight. Recovery from any surgery is not fun. I always tend to think my heart procedures will be a walk in the park compared to pancreas pain. But when it comes to the heart, it is just as hard, only it is different because it makes me feel tired, winded, my head hurts and I feel like I can’t think as clear. I always feel so drained from it. My incision site aches and I can’t raise my right arm or lift anything over five pounds for 6 weeks. So, this shall be interesting. It’s been a few days and I’m already wishing I could just lift my arm up and stretch it. Typing with one hand…this can take awhile. But I’m happy with my pacemaker. My heart rate has been nice and steady. The doctor said that when he was doing the surgery, my heart kept stopping for 4 seconds at a time. So he said that the pacemaker was very much needed. So far, so good. My blood pressure has still been low. So I’ve still been getting a bit dizzy. Only time will tell why this keeps happening. But my chest feels a lot better.
Right now I have pain and nausea – and I’m thinking about how recovery (from any surgery) is never fun. I always tell myself that it won’t be so bad. Then when I go through it I just think about how much it sucks and I can’t wait for it to fully heal. But when I add it all up, how many procedures and surgeries I’ve been through, it just shocks me. It’s weird to think about it all – it seems like it never ends. If I was told five years ago that I would need to have all of this done, I don’t think I would know how to handle it. But since it happens one day at a time it seems to be something I can wrap my head around. I can set the date in my head and tell myself that it will go well. I tell myself that it’s just another step in my life soon to be something of my past. And from that my life and my story continues.
Tags: Cardiac Pacemaker/Ablation
November 2nd, 2011 at 6:28 pm
Julie, thank you for your posts, and your honesty through your experience. You have given me hope as I am also someone suffering with CP and SOD. I have had it for 14 yrs, and I am now scheduled for the TP/AIT surgery with Dr Pruett at U of MN in mid December. Its such a rare thing, its nice to read your blog and know I’m not alone in all this nonsense. So, hang in there with your latest surgery – I totally understand the feeling of things being surreal, and taking things one day at a time!
Hope you are having a restful, good heart day!
Susan, Indiana
November 2nd, 2011 at 7:56 pm
Hi Susan. Thanks for your kind words. Sorry that you have been suffering for so long. Hopefully the TP/AIT will help with many of your symptoms. It’s a big surgery, long recovery but for me was well worth it. Hopefully it will be for you too. Dr. Pruett is amazing! You will be in great hands there. Would you like to share more about your story? What is the date of you surgery in Dec? I would like to keep you in my thoughts in prayers.
Julie
November 8th, 2011 at 6:45 pm
DEAR JULIE, YOU ARE A REAL TROOPER, YOU NEVER CEASE TO AMAZE ME. I WAS IN MY OFFICE YESTERDAY LOOKING AT RAIN IS COMMING IN ITS NEW FRAME. THEY SAY THAT ART IS IN THE EYE OF THE BEHOLDER, I AM THE BEHOLDER I LOVE WHAT YOU CAUGHT IN THIS SETTING. SO I THOUGHT IT’S TIME TO CHECK YOUR PANCREAS TOMARROW SITE TO SEE IF THERE WERE ANY NEW POST AND TO SEE HOW YOU ARE DOING. AND LOW AND BEHOLD THERE WAS YOUR PICTURE. I SAID TO MY WIFE JULIE HAD TO HAVE A PACEMAKER PUT IN. MY WIFE IS IN THE MEDICAL PROFESSION AND SHE EXPLAINED TO ME THE THINGS THAT YOU TALKED ABOUT. YOU DID THE RIGHT THING JULIE ITS YOUR HEALTH THAT MATTERS MOST OF ALL. HANG IN THERE JULIE TAKE IT EASY. THINGS ARE ONLY GOING TO GET BETTER FOR YOU AS SOON AS YOU HEAL.YOU HAVE THE REST OF YOUR LIFE TO ENJOY AND LIVE OUT YOUR DREAMS. LOVE ALLWAYS FROM THE FERNANDES FAMILY
November 9th, 2011 at 2:59 am
Julie,
Right now, I am scheduled for Dec 16. Hopefully there wont be any hangups with the insurance company approvals, etc. I will be participating in a drug study, so I will be in MN a few days earlier than the surgery, having some testing done and getting settled. I am hopeful, scared, nervous, and everything in the middle. I really hope to come home within a month of the surgery, as I am in school, and would like to at least sit up in one class next semester and keep going…but I realize that may be a pipe dream. My body will do what it will. I was joking with my husband last night that my recovery would be quicker if we could convince Dr. Pruett to place a small sock monkey in the space where my spleen and pancreas/duodenum were. The way I figure it, how could I possibly feel bad if I always have a sock monkey with me? LOL Too bad it won’t work, but could you just SEE the xrays? LOLROFL…what revenge on all the jerks that misdiagnosed me for years and years. (Muwahaha as my kids would say)
You can probably tell by now that I have a bit of an odd sense of humor; I would love to blame the illness, but it was there beforehand. It does help me cope and keep a pretty positive attitude in spite of everything. I have been throught the mill with the CP. I had an intrathecal pain pump placed about 3 years ago, and it has been great, other than the progression of the disease has just outpaced the pump’s ability to deal with incredible and constant pain. Also, my endocrine function is shot now, so…time for the old Pancreas to go. I’m hopeful, but it really all seems surreal, as I am only 45 years old, and otherwise very healthy. I really never thought it would come to all of this. Somewhere I guess I hoped the docs that told me I was faking it were right, and I could change my mind and all this would be over. But, no such luck so far…I have tried and tried to tell my pancreas what to do, and I have tried to change my mind into a different situation…all to no avail…we are still in the same situation. Thank you very much for your kind thoughts and prayers. I find myself wondering very much what the hospital and staff at Fairview are like…were things good there post-op? Is it an older hospital, or is it more modern? Were the staff helpful postop? Thanks for your input… hope you are having a good week!
November 9th, 2011 at 5:35 am
Thanks Bob. I’m so glad to know you are enjoying the picture. That makes me so happy to hear. As for my health, I’m started to think that nothing really shocks me anymore. It’s always something new but I’m very thankful to have great doctors and an amazing family. I really think this pacemaker will help. Hope you are well. Say hi to the family.
Julie
November 9th, 2011 at 6:04 am
Hi Susan.
I can totally relate to everything you just wrote. I had ER doctors still not wanting to believe me just a month before my surgery. Some would just say that my pancreas was fine. I would just laugh and say, “Tell that to the world’s best pancreas doctors that told me otherwise.” There will always be some doctors that just don’t understand or they just don’t know enough about the pancreas. But I’m so thankful that there are great doctors out there, doctors who really want to help. I’m with you on the sense of humor. The days I wasn’t crying, I was laughing and joking about it. You do what you have to, to get through the day. Now we joke saying that I’m just “empty” inside. LOL. So many organs removed…so weird.
Dr. Pruett and the staff at U of M Fairview are amazing. The ICU, step down and transplant floor are all very nice. I would say they look like they are newer, more modern than the rest of the hospital. The nurses are used to seeing TP/AIT patients so they are on top of things. I was very impressed. I never had to worry about anything when I was there. I am also part of the study. I’ve had great results so far. And have you met Peggy yet? She is wonderful.
How are your husband and kids dealing with your illness and upcoming surgery and transplant? How old are your kids? Do you have someone who will be able to be with you? I was in MN for a little over a month. Almost 3 weeks in an apartment close to the hospital. Had to go to the clinic 3 times and I was glad I was so close by. Those 3 weeks I wasn’t able to do much for myself. My husband took care of me around the clock. Every 4 hours meds, check blood sugars, replace GJ feeding. It’s a full-time job for the caregiver for at least 3 weeks after getting out of the hospital.
I would love to talk with you on the phone. I could answer any questions you may have. I talked with a few people on the phone before my surgery. I found it to be very helpful. I also met another person who had it done. She is a dear friend of mine now. But if you would like you can send me your number to my email and let me know of a good time to call: http://www.pancreastomorrow.com/contact/ or I can email you my number.