Frieda's Journal

Well its 11/5/11, and I am finally in a “step- down” unit! It is my own private room, with the Helicopter Landing Pad right out the window.... lots of activity! Dropping transplants off all day and night. It is amazing how people come from all over the world to the Cleveland Clinic! I know I am in very good hands here. The staff is outstanding, and you all know I have seen a few hospitals. This is an easy ride from home, and I would highly recommend it to all of you should you or anyone you know ever need this type of a place….God forbid. I am feeling pretty good, but still very weak. I am going to have to do some heavy rehab to get me back to where I was before the first operation. But with traveling to Florida in 4 to 6 weeks, it\'s all the encouragement I need. I can\'t wait to be walking the beaches again!!! Renee detailed all the procedures I had done, so I won\'t reiterate them. My Dr. Petterssen was just in and expressed some very encouraging words! I have already converted to sinus rhythm!! Happy days!!! But, as you can see, I am having a little trouble with spelling and word choices!!! lol! Have to get all these drugs out of my system. It will come back in time. So, all and all, I am feeling a little weak now, but positive! I have a lot of hard work to do in the next year... and then some, but I will do it. Doc wants me in physical therapy/rehabilitation for the next 6 weeks, daily. I am going to ask Renee to pick me up a beginner Salsa Dancing DVD. I will start with that here in my room! The three of us will have fun! It will be a challenge to Rich… but his wonderful humor will keep us all laughing! I have experienced many changes within a short period of time as of late. See you all soon! Thank you so much for all your thoughts, and prayers. I love you all so much. And the Beat goes on and on!!! Frieda

Hello, Just wanted to send out another update about my mom. It honestly has been a tough couple of days for her. My mom has comorbidities; one being pulmonary hypertension. The nurse explained that due to the fact that it was an issue prior to surgery, it is almost expected that it would be an obstacle after. The nurse explained that her pulmonary arterial pressure is remaining high. She is not breathing deep enough so CO2 is building up. They are giving her medication to aide in stabilizing her arterial pressure, as well as, making her wear a breathing mask. This is common for patients with the same condition. She will get through it, but she is very frustrated and uncomfortable. I can see it and feel it. We are all encouraging her to take herself elsewhere. When I see her focusing on her breathing and meditation, her number goes down. When she fusses and begins to become agitated, her number goes back up. Please send out soothing thoughts to her. I have been telling her about all the support she is getting and it makes her feel good. Love, Renee

Saw mom a bit ago. Her color looks great and her hair is shiny! She was happy to hear that! She is very groggy and it pain, but otherwise she said she is ok. They took her breathing tube out this morning, and the nurse said she may try to get her to sit in a chair today. Hopefully she will be able to go into the “step-down” unit tomorrow. It will be a lot more comfortable for her. Thankfully, the hard and scary part is over. Today is the second hardest for her. Hopefully, it will just get easier as the days go on. Thank you all again for your thoughts, prayers and love! Keep ‘em coming! Xoxo Renee

Hi Everyone! My name is Renee, Frieda\'s daughter. My step-dad Rich, my aunt Evelyn and myself are finally relaxing in our room after a very long day at the hospital. Of course it cannot compare to what my mom went through. Let me start by saying that my mom, as always, persevered through the situation. She is the most exceptional woman I have ever known. I am blessed that this woman happens to be my mother. There are not enough words or time at this moment to explain to you all what an incredible woman she is. The physician decided that her aortic valve was not in need of repair, so the following procedures were done: •Replacement of the mitro-valve (tissue replacement vs. mechanical) •Maze heart procedure, which is a complex procedure to treat atrial fibrillation •One bypass Post-op, we all spoke to the physician who said that she will never be 100% again, but she will be better. I believe that she will prove them wrong. They have no idea who they are dealing with! :) She very well may re-write the book for the recovery of heart/lung patients. Mark my words…. Please continue to send great energy, positive thoughts and love to my mom. Medical technology can heal the wounds, but the spirit and love passed from one another is truly magical. Thank you to all of you for aiding in healing my mom….from the bottom of my heart and soul. She is on her way to recovery, but will continue to need strength from those who love her. Namaste xoxo

Well the day is here. I\'m scheduled for 10am this morning. Had my pre-op test yesterday, so everything is a go. It has been so good to have Rich at my side through all of this, he has been great. Last night Renee and Evelyn arrived. Hard ride in for them, rained all the way. They didn\'t get in till 9:30pm. They will be with me through Sunday afternoon. So good to have them with me. Craig wanted to be here badly, but he is sick and doc said no. I know he is with me in his heart. I want to thank my friends and family for all their, thoughts, prayers and support through this. I couldn\'t have made it this far without you guys, you have been great. All the phone calls and encouraging words helped so much. I\'ve asked that my spirit guides be with my surgeon, Dr. Pettersson and his team. Hope they had a good night’s sleep and are well rested. Last night I had to take a shower with antibacterial soap and shampoo my hair. I couldn\'t use any product afterward. Then again the same thing, shower and shampoo. My hair without product is like straw...Ugh!!! There is a reason for all this, I know, it\'s for my own good, just had to bitch a little. Will be heading for the hospital soon. Renee will be doing updates to keep you all informed, till I can do so myself. Till then, thanks again to all of you for being there for me. Love to all.

Well four days left till surgery. We will be leaving for Cleveland Tues afternoon. It\'s a three to four hour drive, depending on traffic. After checking into our hotel plan on going to a great restaurant for a wonderful meal, after all I\'ll be eating hospital food for a week of so from then on out. I am feel pretty good, been working on sending myself healing energy, seems to be working. I have more energy now than a week or so ago. Also sending my surgeon and his staff positive energy so they will be at the top of their game and well rested the day of surgery. May do another posting in a day or so, if not will be in touch afterward. Thanks you all for your encouraging words, prayers and thourhts. Frieda

Well, my surgery date is one week away. Oh, I can hardly wait, I must contain myself. I keep trying to find some humor to help me through these days. Seeing Robin Williams last month in Cleveland at his benefit for the hospital has helped me with this process. It was good to hear a comedian\'s point of view on open heart surgery. Laughed my ass off! Plus I found out one of his docs is one of mine. I take that as a good sigh. All in all it isn\'t too bad. Keep myself busy with all the little details that have to be taken care of before we leave on the 18th.l I think it may hit me a little harder once we arrive in Cleveland. In the mean time I am taking it one day at a time. What helps is my family and friends have been keeping in close contact. It is go good to talk to everyone, really helps. Keep in touch, will write more soon. Now if the Tigers can win the game today and more forword, I\'d be so happy! Love watching them on TV. We need a win today, Go Tigers. The Beat goes on and on, Frieda All and

This morning I woke up to the sound of geese migrating south for the winter. We should be heading to Florida also. (Boo-Hoo, have to wait till after my surgery. Sometimes I can be soooo spoiled.) Then I remembered the dream that I woke from. My husband Rich and I were walking on a path when we came upon a pond. There was a woman going into the pond with a good sized box. I continued to walk and then looked back at her and she laughed at me then slipped under the water with the box. We then went into the water and were effortlessly gliding in the water. We came to the shore where there were bloders. I had a hard time pulling myself onto the shore. When I got out and looked around, the pond was surrounded with large beautiful homes. The only persons I was were a father and son collecting fishing gear. They looked at us but were not friendly. Then i noticed the boulders were covered with something that the birds and ducks did not like the feel of on their feet and would not stay. So the pond and surrounding area was perfect, nothing out of place, no mess, very clean and orderly. I then started to feel uncomfortable. It was starting to get a little dark. I told Rich I wanted to leave and he became very anxious, saying he didn\'t know where we were or how we are going to get out. I told him to call a cab. The end. That was it. I can usually analyze my dreams, but not this one so far. Am I in denial about my surgery? I feeling pretty calm, sleeping ok. I spend my days working on preparing my body, mind and spirt for the up coming surgery. I do my daily yoga, meditating, writing in my journal. Also working on cleaning up the house and organizing things. Laying low, don\'t want to be out in public to much. Want to stay healthy as can be before surgery. So am I getting my ducks in a row or am I in denial? Maybe writing this and rereading it will help me to process it and shed some light. Till next time. And the Beat goes on and on, Frieda

I am starting to count the days until my surgery. Getting as much done before so things will hopelully run smoothly once I am again home. Rich is being a great support. Always there when I need him! Feeling ok. I have a CD from CC, \"Guided Imagery for Surgery\". I\'ve started meditating to it. Suprising what come up durning these sessions. I feel it will help with my healing. Sleepng well, which surprises me. Till next time. And the beat goes on and on, Frieda

Hopefully I will get all of my journal in this time. Here goes. The doctors did hint at a possible second surgery at that time. Then this pasted July they confirmed I needed a second surgery to now replace my Mitral and Aortic valves. Come to find out the surgeon that preformed the first surgery is known as a \"repair man\". He doesn\"t believe in replacements; he feels if your doctor recommends a replacement valve you should replace you doctor! The docs at CC feelI should have had the Mitral valve replaced in the first operation. Which would have saved me a lot of heartache. First of all I wouldn\'t have developed Pulmonary Hypertension. One of the reasons for the replacement of the Mitral valve is because of the unusual scar tissue that has formed and is narrowing the valve. The Aortic valve has somewhat deteriorated since the first surgery and also needs to be replaced. So now after all the testing at CC I am scheduled to have both the Mitral and Aortiac valves replaced on Oct. 20. Dr. Pettersson is my highly recommed surgeon. I have met with him and feel confident he and his staff will do their best to help me lead a somewhat normal life. It has taken me some time to come to terms with the fact that I am facing yet another open heart surgery. The first time I didn\'t know what to expect and I didn\'t do enough research. This time is a whole other ball game. I would be lying if I said I wasn\'t afraid. But as I understand it, fear cancels out faith. So I am going with faith and putting my heart in His hands for the best outcome. My desires aren\'t big, I would be happy if I can walk a few miles a day and am again riding my bike. Don\'t plan on climbing any mountians, never planned on that. I just want to do my yoga, walk at a good pace and go shopping!!! I am also planning and looking forward to our cruise next Summer to Alaska. (My counselor thought it would be a good idea to start planning the trip before surgery). It\'s one place I have dreamed of going to for years. So the time is now to make that dream a reality. Please keep in touch, your thoughts and paryers are would I would like at this time. And the Beat goes on and on, Frieda

I couldn\'t seem to get this all on may first posting, so I\'m going to try and finish it now. Back home i restarted my walking routine. When the weather broke in the Spring I started walking outdoors. I was up to a mile a day by June. Then I started experiencing a slight shortness of breath and had to slow down. The shortness of breath continued to worsen. Come to find out a radiated heart developes an unsual form of scar tissue. More on this later. In the mean time I was still experiencing A-Fib. My cardiologist tried several different meds to control it, but I could not tolerate them. He then had me see a Cardiac Electophysioligst. He ran some test and suggested I get a second opinion at U of M. The question was; is it a valve problem or an electrical problem. Because of my first experience with U of M I told him I would rather go to the Cleveland Clinic, (should have been my first choice). So in Oct.l 2010 I started with the Cleveland Clinic. I first saw an electrophysioligest. I had many test during the next several months. I also saw a pulmonary doc. I was hospitalized in Jan, 2011 for testing of shortness of breath and was found to have Pulmonary Hypertension. Because of the narrowing of the Mitral valve from the u nsual scar tissue that had formed. This was the cause of the shortness of breath I experienced the pasted June. So I went on Adcirca. That did help somewhat to open my lungs and help me breath better. I was still experiencing the A-Fib at this time. Then in June, 2011 I was hospitalized again for the A-Fib and loaded with Tikosyn my heart was now in sinse rhythm. As it turned out I had both an electrical and a valve problem.

I am Frieda, a 68 year old female. I had surgery in Oct. 2009 to repair my Mitral & Tricuspid valves at the University of Michigan. I would like to give you some background as to why I was experiencing problems with my heart. In 1967 I was diagnosed with Hodgkin\'s desease, at the age of 24. I received 27 treatments of cobalt radation. I was cured! Radiation was my only choice at that time and it worked. Unknown to me, at that time, my heart and lungs were burned by the radiation. I was basically symptom free up till about 10 years before surgery. In 1999 I did start to experience some shortness of breath. I was tested and treated for COPD at that time. Since I was a former smoker they had something to blame the shortness of breath on. No doctor related my symptoms to the radiation although; they did detect a heart murmur. They gave me a script for an inhaler. So I lived with the shortness of breath and compensated when I needed to. In 2007 on a flight from Florida I experienced a server shortness of breath. I had a very hard time walking off the plane. The next day I was diagnosed with congestive heart failure. During the next year I experienced congestive heart failure two more times. The only thing my doctor would do was change my blood pressure medicine. I then went to another cardiologist who preformed a TEE and discovered I had severe reguration of the Mitral valve. He recommended I see a doctor at U of M. I saw the surgeon in Sept. 2009 and was scheduled for surgery the next month. I was lead to believe this surgeon would actually be the one doing the surgery. Silly me, I was at a teaching hospital and of course it may not work out that way. The sergeon also gave me achoice of how he would make the incision, either though the chest or through the right side. Unfortunately, since I am somewhat vain I chose the lateral. I have since found out that was not the best choice for me because of the stiffness that had occurred to my heart, lungs and surrounding area because of the radiation. I should never have been given that choice. That was the surgeon\'s job. As a result, one of the complations of the surgery was my right phrenic nerve in now paralyzed and I have limited use of my right lung. I was in the hospital for three weeks after surgery. Once home I had a difficult time for about three more weeks. As I started to feel better my pulmonary doctor had me start walking around in my home daily, increasing more and more each day. He also wanted me to stay in my home once the furnace went on in the fall, till it was off in the spring. Not to go out even or dinner or the movies, just stay in period! But on Christmas Eve I joined my family for dinner. Within a few days I developed a cold. Then on New Year\'s Eve my A-Fib realy kicked up. I went to the emergency room and was admitted with both A-Fib and pneumonia. It was severe! So much for not listening to my doctor. At one point I became so bad the staff worked on me for four hours before they could stabilize me. When I woke, I had a breathing tube in, but I was still alive. They keeped me in for three more weeks to make sure I was really well.