Tia's Heart Valve Journal

It has been almost two years since I have made a journal entry, but I have often read the updates of others. Thank you for sharing.

I had open heart surgery on February 28, 2011 to repair my leaking bicuspid aortic valve and to repair the resulting aneurysm. I did not find out that I had the bicuspid valve until age 50 in 2006. I am very thankful that it was discovered and that the surgery could be done, saving my life. My mother lost her life due to a burst aorta in 1995, but no one knew she had any problem with her heart or aorta before it burst. I so wish we had known so that she could have been saved. That makes me even more grateful that my valve defect was found in time to help me.

I am getting along well as far as my heart is concerned. All is operating as it should be. I did retire early from special education teaching at the end of the first semester in December 2011, mostly due to fatigue resulting from other health issues. I also was not fully recovered from my heart surgery and bleeding ulcer right after the surgery in addition to these other health issues, so retirement was my only option in order to regain my health. My health has been improving since that time, for which I am very thankful.

One thing I would say to those of you who are preparing for open heart surgery is that I found that the surgery and hospitalization were not nearly as bad as I thought they would be going in. I expected far more pain and for it to take me longer to heal than was actually the case. The hospital staff were wonderful, as were my family and friends.

I know that finding this Heart Valve Journal and Adam Pick's book were great blessings, as were all of the wonderful people who shared their stories and knowledge and gave me encouragement when I needed it. Thank you.

Another thing that helped me was Peggy Huddleston's book and CD on preparing for surgery. It helped me prepare both mentally and emotionally. The CD helped calm me in the weeks before my surgery. The book educated me on some things I needed to do to prepare and things I needed to ask my surgeon. I was even allowed to listen to my MP3 player with Peggy's audio and other favorite calming and Christian music during the surgery. I was calm going in and came through surgery with no complications. I would highly recommend both her book and CD. I just looked them up on Amazon and found Prepare for Surgery, Heal Faster with Relaxation and Quick Start CD: A Guide of Mind-Body Techniques by Peggy Huddleston, which is the book and CD together. They were separate when I got them.

I continue to be very thankful that my leaking valve was found and could be repaired and that I am still alive and my heart is healthy. I wish all of you anticipating open heart surgery all the best. I pray that you will find it to be easier than you thought it would be, as I did, and that all goes well for you. I look forward to reading about your progress as you recover and mark your months and years after surgery. Be thankful, as I am, that these lifesaving surgeries and wonderful surgeons and staff are there for us. God bless!

As of July 28th, it has been 5 months since my surgery and 4 1/2 months since my second hospitalization for the bleeding ulcer complication. I am doing pretty well. I don't have nearly enough energy, but one of my doctors told me recently that it will take my body a total of 18 months from the surgery date (Feb. 28th) for my body to totally recover. That is 12 months for the surgey and an additional 6 months for the bleed. I guess that explains my lack of energy at this time. I think I am regaining a little energy, but it is happening so slowly, it is hard to notice. She also had me go through a 7 day detox program to help my body get rid of the anesthesia that was still there. I could tell I got rid of some toxins, which is great. My scar still bothers me some (mainly itching), but I think that is because it has keloided. The Xeragel I am using on it is helping some. I do not feel any pain from the incision. Overall, I am doing better, and most of all, I am thankful to be alive. School and my teaching year will begin at the end of this week, so I will be headed back to work. I wish everyone the best as they go into and recover from their surgeries. I thank you all for the support you have given to me over these months.

My latest milestone in my recovery was that I was finally cleared to be treated by my chiropractor, as of the beginning of May. I have had two adjustments so far, in conjunction with ultrasound treatments, and I can already feel some improvement in my back, neck, and headache pain. I have quite a way to go, but at least I am finally getting some pain relief.
I am continuing with physical therapy for my back and neck. I have four more cardiac rehab sessions. This has been quite challenging. They push you very hard physically. It has gotten me back to exercising, which is a very good thing, and now I must keep it up on my own.

I am continuing to work through my cardiac rehab, which is still a challenge for me but I am getting a little stronger. I finally had to drop the resistance/ weight training part for now due to the increased back and neck pain. That part I will work on with my physical therapist. I am up to 10 minutes per machine now. I am still waiting for my energy I had after surgery to return. My echo and blood work were fine, so no problems there. I will keep exercising.

Cardiac rehab is going alright. It sure wears me out and gives me sore muscles. My neck, back, and headache as well a chest pain seem to be worse on afternoons and evenings after a.m. rehab. The chest pain is sore muscles. I have started resistance training Wed. and today. I have only had two physical therapy sessions, so it is still a little early to tell how much it will help. I am doing the exercises I have been given. I have had no more episodes of atrial fib, as far as I know. I am just trying to alternate increased activity, as tolerated, with rest. I think all is on schedule, except for my pain. I can go to the chiropractor in early May!

My follow up appointment with Dr. David Heimansohn, my heart surgeon, went well. (If anyone is contemplating surgery in the Indianapolis area, I very highly recommend Dr. Heimansohn, who is part of CORVASC, and the St. Vincent's Heart Center.) He said I was doing well. I may now drive and increase my activity (reaching, gradually lifting more) as tolerated. I will let pain be my guide: If it hurts, then don't do it. Due to the lifting and dealing with students in wheelchairs, I will not be able to return to my teaching job this school year. That will give me the necessary time to heal, with a little extra time needed because of my bleeding ulcer and second hospitalization. Dr. Heimansohn said my heart sounds great. I cannot yet go to the chiropractor. I was pleased with the report.
I will continue with cardiac rehab for a total of 6 weeks, 3 times a week. I started physical therapy for the back and neck pain today, which should help me.

Tomorrow I will have my follow up appt. with my surgeon. It will be 5 weeks tomorrow since my surgery. I am hoping I will get the okay to drive, I will get a few questions answered, check to make sure some minor symptoms are normal, how the rest of my recovery will progress, etc. and thank him, of course.
I have not felt as energetic or as well and I have had more pain/ tightness around my incision the last couple of days. I will find out tomorrow if this is normal. I haven't heard the results of the echo I had on Thursday.
Overall, I am doing pretty well. I think cardiac rehab will help me feel better and help me begin to get into shape,

I went to my cardiologist today. My heart is back in normal sinus rhythm. He said atrial fib is not uncommon after heart surgery. I will continue to take the amiodorone until I go back to see him in about 5 weeks. He said I am doing well otherwise. I go for an echocardiogram this Fri. to check for possible fluid around the heart. I will be starting cardiac rehab soon.

I went to see my internist as a follow up to my 2nd hospitalization (ulcer, bleeding, and low hemoglobin count). I am doing pretty well and feeling good except for some persistent back, neck, and headache pain. She changed a few meds and prescribed physical therapy. She did an EKG and discovered my heart was in atrial fib again and at 120 BPM. She put me back on the amiodorone twice a day. She checked with the cardiologist and they decided I did not need to go back into the hospital. I have an appt. with the cardiologist tomorrow, so they will do another EKG and check things out. My energy is good, and overall, I feel pretty good. Thank you to all of you who have posted in my guestbook with such encouragement, prayers, and information. You are all such a comfort. Take care, everyone!

Has anyone heard anything from or about how Julie Taylor is doing? Thanks.

I am progressing slowly, which I think is as it should be. I still have more pain than I would like, but I do not want to take any narcotic pain pills because of the way they make me feel. I think the headaches may be partly from the anesthetics, etc. still making their way out of my body. I am prone to many headaches and back and neck pain anyway. Otherwise, I feel pretty good. I can get around the house and do little things for short periods of time with rest in between. I am glad to have the extra energy that I have regained so far-- much more already than I have had in years. I am anxious to see what it feels like to have even more when I am fully recovered. It has just been 23 days since my surgery, so I think I am doing pretty well.

To everyone with doctor's visits and surgery this week, my thoughts and prayers are with you.

I mentioned that I had trouble seeing with the new glasses I got just before surgery. The distance vision is pretty good, but the bifocal part was fuzzy. I had a pair of glasses I got 16 months ago that were the wrong bifocal prescription and the correct distance vision prescription, and the eye dr. at that time would never make them right. I couldn't wear them and just went back to my old glasses out of desperation. This a.m., I found that pair of glasses with the prescription I couldn't see out of last year, and I can now see better with them than with the glasses I got just before surgery. Go figure! God must be looking out for me once again. I am just happy to be able to see much better AND to finally get some use out of those previously unable to be used glasses. Thank you to all of you who responded to my question about vision problems after surgery. I really appreciated the answers.

For those of you who have already been through your open heart surgeries, did any of you experience blurry or not clear vision for several weeks after surgery? I thought I read something about anesthesia affecting vision for awhile. I ordered new glasses a week before surgery, and my husband picked them up and took them to me at the hospital. My vision through the bifocals is still not very clear. My distance vision doesn't seems too bad. I didn't know if this could be normal after surgery or if my glasses are not quite right. Thank you for taking the time to respond.
Tia Phillips

I was discharged from the second hospital stay last night, March 16, at 9:50 p.m. I had to have two more units of blood yesterday afternoon and evening, each taking about 3 hours to be administered, and then a blood test an hour after the last one and waiting for the results. My hemoglobin had been 4.something when I went into the hospital last Sunday, and was 8.6 yesterday morning, and was up to 11.6 before they dismissed me. The scopes on Tuesday found that I have an ulcer in my esophagus, which the doctors think caused all of the bleeding. I had to have a total of 7 units of blood during my hospital stay. The staff at St. Joseph Hospital were kind, very competent, and wonderful. I can't complement and thank them enough. I had a few medication changes, but the only diet restriction I have is no added salt and regular diet as tolerated. I cannot take any more aspirin or ibuprofen. I am feeling oh so much better than Sunday when I passed out. I am a little tired and feel somewhat like a pin cushion, but otherwise I feel good. I am ready to continue the process of recuperation from my heart surgery. My husband, Jeff, has been so wonderful through all of this. God indeed blessed me when He brought him to me. I am also blessed with a very wonderful family and wonderful friends. That includes the wonderful friends I have met here on HVJ. Thank you all for your prayers and support.

On Sunday, March 13, I was taken by ambulance to the hospital. I have a GI bleed someplace. They are trying to find it. I am still in the St. Joe Hospital in Kokomo. They are taking excellent care of me. All of my dr.'s are in Kokomo, so this was the right place to come. My heart went into atrial fibrulation due to the dehydration and low hemoglobin count. My heart is back into normal sinus rhythm as of 3 a.m. today. I have had two scopes and possibly another with a swallowed camera to go. I am feeling much better and will be glad to get back home!

I got home about 7:30 last night. My sister, Tari, came last night, also. I am feeling pretty good. I am taking it easy, as ordered, and I don't have the energy yet to do a great deal. That will come. Thank you all for your prayers, cards, phone calls, and posts.
Love, Tia

I will be leaving the hospital for home within about 15 minutes. The ride is long, but it will be good to get there. It seems like I have been away forever. Thank you for all of your prayers, support, and posts.
Tia

Looks ls like I'm going home to today--later this afternoon,

I think they have found the right combination of pills to help combat the pain. It is really hard to type correctly, I guess because the pills make me kind of loopy. The care is excellent here! I would definitely recommend it: the ''st 'Vincent Heart Center in Indianapolis. I would also highly recommend my heart surgeon, DR. David Heimansohn. He is one one if the best heart surgeons in the country. He was able to repair rather than replace my aortic valve. He is also very nice.

I really appreciate all of the phone calls, visits, and posts to my guestbook. They have made me feel much better.

I needed more pain killer today. That really helped. The doctors and nurses are great! Will post more tomorrow.
Tia

I had a very good day today after yesterday's surgery, I have some pain but not so much from the incision. It is from the soreness from the retraction and neck and back pain from the retraction, too. I was up in a chair at 6 a.m., went for a longer walk around 9 a.m., and back up in the chair until about noon. I then had my drainage tubes taken out and rested for about 2 hours. It was too noisy to get to sleep. I went for another longer walk after that. I am doing pretty well with the spirometer, according to the respiratory therapist. I have one of the best surgeons in the country, and the care here at The St. Vincent's Heart Center is excellent!!! Thank you all for your visits and great messages! I appreciate them all.
Tia

Tia is out of surgery and is in the recovery room.
The surgery went very well. They repaired the aortic valve and replaced the aortic root.

I will leave for the hospital in a few minutes. I am ready to do this and get it over with. It will be good. My husband, Jeff, and other family will post until I can again. God bless you all and thank you for your prayers!
Love, Tia

I went through the pre-op tests and meetings with my surgeon, anesthesiologist, and others in my care team. My husband and I were to be there about three hours, but we were there about five and a half due to waiting for the surgeon and anesthesiologist to get out of surgery to meet with us. We were well taken care of. Right before we were to leave, we were told to wait because the physician's assistant needed to speak to us. She told us that my surgeon will need to perform an emergency surgery tomorrow morning. Please keep that person in your prayers, as well. My surgery has been rescheduled for Monday, Feb. 28th at noon.

I am feeling better. The sore throat is gone, and the head cold is getting much better. I feel better each day, so I should be nearly over all of this by Friday. I am still working today to finish everything. I will get as much done as I can. I go in for pre-op tests and meetings with medical staff tomorrow at 10 a.m. Thank you to all of you for your prayers, support, and encouragement. My prayers and all the best to all of you who are recovering and who are going into surgery. Eric, I hope all goes well with your appointment. Julie, I will be praying and thinking of you as I go into surgery, with you going into your surgery a few hours later. We will catch up later.

I am in the last week of preparing for surgery. There is so much to do. Surgery has been scheduled for Feb. 25 at 8 a.m. I am looking forward to getting through it and for the time to rest afterward. I am getting kind of nervous even though I am confident all will go well. I am also kind of excited that I will finally get my valve and aorta fixed and that I will finally feel better. I started getting a sore throat this morning. I am fighting it with homeopathics, which is all I am allowed, of course. I hope I can kick it and not be sick before surgery.

I met with my surgeon, Dr. Heimansohn, this morning. I really like him. He took his time to really explain everything to me and to answer all of my questions. He said that I have an aneurysm in my aorta and that I will need to have 3 to 5 inches of it removed and replaced. The aorta is 5 cm when it should be 2.5 cm. He said he thinks he may be able to repair my aortic valve from what he saw on my echo. That is great news! If it cannot be repaired, he will replace it with a tissue valve, so I will not need to take blood thinners. I will just have to take Plavix for 6 to 8 weeks. He said that by the time I may have to get it replaced in 10 or more years, they will probably have perfected the technique where they replace the aortic valve through a catheter. I am feeling much better about the surgery, but hearing that I have an aneurysm is pretty scary. I have finally found the reason for all of these years of unexplained fatigue. I wish this could have been identified and fixed long ago. I am so fortunate that I now know what is wrong and that it can be repaired. It will be good to finally have my heart pumping oxygenated blood to my brain and to the rest of my body as it is supposed to. I am looking forward to feeling the difference. I will receive the date of my surgery in the next few days. It will probably be in late February.

Thank you to all of you who have shared your experiences and information, and thank you to all of you who have shared in my guestbook. Your words have been comforting and encouraging.

I will be meeting my heart surgeon on Monday, February 7. I am making my list of questions to ask. I am looking forward to beginning this road to my surgery. I hope I will think of all the right questions I need to ask. I have been eagerly looking forward to this appointment. I am so looking forward to feeling better.

I have really appreciated being able to read and share with others here on Heart Valve Journals. It has been a great help to me. Thank you to all of you.

I would love to hear from anyone who has experienced a bounding pulse (very hard, pounding hearbeat) with your bicuspid or any leaking aortic valve. Mine has interfered with my sleep with many years, which led to my diagnosis. I can feel it in my chest, head, and most other parts of my body. It is definitely getting worse as I await being given a surgery date. Taking hawthorne berry helps some. What did you find helped you? Thank you.

Have any of you used the Incision Shield Adam wrote about in his book (pg. 145)? If so, was it helpful? Thank you.

I had my heart catheterization on Jan. 11. It went well, and they found no blockage. The leaking bicuspid aortic valve, dilated aorta, and dilated heart were seen as expected and confirming what was seen on the echo. I am off work until Monday and restricted from normal activities until Saturday. It has been difficult not being able to lift more than 5 pounds or bend over just for these couple of days. I know it will be much longer after my surgery, and I am kind of worried about the things I will not be able to do for myself. I am also worried about the pain. I am trying to focus on how much better I hope to feel after I recuperate from the valve replacement surgery. I hope I can get everything done I must get done before I have the surgery. I wish I knew the date.

It is comforting and inspiring to read the journals of others who have gone through the surgery.

I have had yearly echocardiograms since 2006, with no change, but this year was different. I have known since then that I would need to have the aortic valve replaced, but I did not know it would be this soon. I was called back to see the cardiologist after my echo in December 2010. At my appointment with my cardiologist on January 3, 2011, I was told that the regurgitation or leakage had changed from moderate and was now considered moderate to severe and there was now some dilation of the heart. The cardiologist told me it was now time to replace the aortic valve and that the surgery will take place in about 8 to 10 weeks. That day, an appointment was made for me to have a heart catheterization. This will take place on January 11. The next day I was given an appointment date of February 7 to meet with the heart surgeon. I will then see my cardiologist again on February 10.
I am now trying to get caught up with everything I must do before my surgery, both at work and at home. I hope that I can get it all done in time. It is very stessful. I am also trying to learn as much as I can about the procedures I will undergo and about how I can best prepare myself with diet, exercise, and supplements. I am looking forward to getting through the surgery and feeling much better and hopefully having much more energy. The fatigue that began nearly 15 years ago has gotten progressively worse. I think I finally have an explanation for that fatigue and now, finally, a remedy.