Hi all...it has been a while since I've posted. I have continued to work through this pericarditis over the past several months. I had a follow-up cardiac MRI and blood work done on May 27 and am pleased to report that I don't have to see my cardiologist until next year!!!!! There is little to no inflammation around my heart! Yeah! I just want to give a HUGE shout out to my WONDERFUL cardiologist, DR. Cavalcante, at UPMC Presbyterian in Pittsburgh. He is the absolute BEST! He has been the "bright light" for me throughout this whole ordeal!
Introducing RIGBY....my new walking partner! We adopted him last week from a shelter in NC. He's an awesome little guy!
Another good report!
Journal posted on March 15, 2016
Went for a follow-up cardiac MRI last Tuesday at UPMC. My cardiologist is very please with my progress. The pericarditis is dramatically reduced, BUT, there is still some inflammation surrounding my heart. I will continue treatment and go back for another MRI and some blood work in three months. Yay!!! A break from tests and Drs until summer!!!!! I have been going to cardiac rehab for about a month now and feeling stronger everyday. I believe I have finally turned that corner!!!
So I forgot to mention when I posted yesterday that my cardiologist released me (again) to go to cardiac rehab. I had my first "real" session this morning. Felt really good to finally get to do something! Pericarditis is the pits! I pray it never returns!!
I had my follow-up with the cardiologist yesterday. According to the blood work and echo cardiogram done last week, the pericarditis looks like it is under control. I am off the 600 mgs of ibuprofen 3X a day and continuing on the Colchicine for another month or two; HOWEVER, now he is concerned about my left ventricle function. I have had 5 echocardiograms since November 11. Two at Cleveland Clinic post-op. One on Dec. 23 when all the testing was done to get to the bottom of my persistent night sweats. One at UPMC when I was hospitalized and diagnosed with pericarditis over the Christmas holiday, and the one done last week as a follow up to the UPMC event. Here's the thing....my ejection fraction is all over the place. At CC I was in the 50s. On Dec. 23 I was in the 40-45 range. UPMC had me at 62. Last week I was at 35-40 range. My cardiologist is having all the echoes sent to his office so he can review them together. My husband and I will meet with him in 2 weeks and so we can review the actual discs together. Then I am scheduled for another echo in a month. I must admit I am beginning to get really discouraged. I am really nervous about these new findings.
Well, the battle with this pericarditis continues. I have been faithfully taking my meds as prescribed. I have refrained from cardiac rehab....I am beginning to go stir crazy! So, I had more blood work done this past Thursday and another echo done on Friday. Probably not a great idea...BUT....I am sitting here comparing the results from the echo done on December 23 with the one done on January 22 (Friday) as I wait for a call from my cardiologist to explain these results.
In the mean time, I have a couple of questions for all of you heart brothers and sisters:
First, I am curious if others have had pericarditis? If so, would you mind sharing your experience with me or pointing me to your journal?
Second, I am wondering if others had a decrease in their ejection fraction early on post valve repair/replacement? Were there any changes in your left and/or right ventricle size and function?
Thanks in advance for your responses!
Your heart sister, Jacqueline
The appointment with my cardiologist (Dr. Baily) went well. He is keeping a close eye on me, but he said that I can go to cardiac rehab as long as I don't over-do-it! He has extended my time on the ibuprofen from 21 days to one month. I go for more blood work and another echocardiogram on Jan. 21. My next follow-up appointment is scheduled for Feb. 2.
Bit of a set-back over the holidays. I had my 6 week post op check with my cardiologist on December 21. At that time, I was continuing to experience "drenching" nights sweats. Concerned about possible infection, he sent me for a blood panel, blood cultures, a CT scan, and echocardiogram--all before heading to Pittsburgh on Dec. 23rd to spend Christmas with Christian's family. I left knowing that I wouldn't hear anything about the results until the following week.
Well, while we were in Pittsburgh, I developed significant pain in my left shoulder. By the 27th nothing worked to relieve the pain. On the morning of the 28th I got up around 5:30 am to go to the bathroom and experienced a stabbing pain in my left ribcage right below my breast area as well as some nausea (in addition to the existing shoulder pain). As I headed back to bed, I blacked out. This landed me in the ER at UPMC Pittsburgh. They decided to admit me and run the exact same tests that had been run here at home...along with a Cardiac MRI (instead of the CT Scan). I was discharged on December 29.
Fortunately, infection has been ruled out. Unfortunately, I do have Pericarditis. I have been placed on 600 mgs of ibuprofen 3 times a day along with .6 mg of Colchicine twice a day. Cardiac rehab has been postponed for the time being. I go tomorrow for more blood work; follow-up with my cardiologist on Jan. 7; and will do another Cardiac MRI in 6 weeks.
Praying that the inflammation around my heart subsides!
Here's a photo of me and one of the Cleveland Clinic Chaplains. She came and prayed with me and my husband. I was wheeled back to the OR shortly thereafter.
Almost 4 weeks post-op
Journal posted on December 7, 2015
Well, last week (post-op week 3) was filled with ups and downs. On the one hand, my surgical incisions are healing beautifully. I've experienced a burning sensation at the primary incision site and was assured by a CC nurse that this is due to my nerves "coming back online". Uncomfortable...but progress none the less! Fortunately, that sensation began to subside over the weekend and I feel very little of it today. On the other hand, I had to make a trip to the local ER to have the areas where my tubes were inserted inspected. They are not healing as quickly and I was concerned about possible infection. They changed the steri-strips (sp) and sent me home with 7 days worth of antibiotics. I have a follow-up with my cardiologist's surgical team this week to check the wounds again. Another little bump in the road has been a consistently elevated resting heart rate. So CC increased my beta blocker from 50 mg to 75 mg on Friday. Not sure how long it take to actually make a difference. I am beginning to learn that the healing process is filled with peaks and valleys. Last week there were fewer peaks and more valleys. But I remain hopeful for whatever this weeks holds!
It is hard to believe that just two weeks ago today I was moved from Cleveland Clinic's ICU to their step-down unit. Looking back now...I am so glad that my surgery date was pushed up from December 17 to November 11! I am so amazed at my recovery process thus far. I am less and less dependent on pain meds every day...and I have more mobility (at this juncture) than I ever imagined possible thanks to the surgeons who used the robotic approach to repair my mitral valve--what a modern medical miracle! Above all, I am most grateful today for all of you who have supported (and continue to support) me on this journey. So, Happy Thanksgiving my heart brothers and sisters, friends, and family. My heart is not only repaired but bursting with gratitude on this special day for you all!
This is it. I'm headed to the hospital in about 15 minutes. 6am check in. 7:30-8:00 am surgery! I have to be honest. I am nervous but at peace (if it is possible to hold these two in tension!) Sending a great big thanks to all of you-- my heart brothers and sisters. You are such a treasure! I am so grateful for the overwhelming amount of support you have offered me thus far in this process! Talk to you when I am on the healing side! xxoo
Look who paid me a visit while I was waiting for my echocardiogram today....got to love a hospital with therapy dogs!
Pre-op testing day 1...
Journal posted on November 9, 2015
Well, we checked into a hotel last night near the Cleveland Clinic. My testing began this morning at 7:30 am. All went well...I was happy to finally be able to drink water and get a bite to eat! I've shed a few tears today reading FB posts and text and listening to voicemail messages from family and friends....it's only 1:40 pm....so I am sure there are more emotional moments to come. I imagine that is not unusual under the circumstances. I am very impressed with the care I have received thus far. Tomorrow I will meet my cardiologist, surgeon, and the team.
Headed to Ohio tomorrow. We will be staying with my Aunt Donna and Uncle Keith over the weekend. Pre-op testing begins at CC first thing Monday morning. We will meet with my surgeon and team on Tuesday. Downloading relaxation music and some of my favorite alternative artists to my iPhone. Hard to believe that this time next week I will be 2 days post-op!
Hi heart sisters....I am scheduled to have robotic mitral valve repair on November 11. If all goes as planned my incisions will be on my right side. However, in the event that plans change and I would have a traditional or mini sternotomy. I was wondering if you could offer some post-surgery bra suggestions? Thanks in advance for you help!
So the countdown is on. So much to do and so little time. And now I have a cold dragging me down. Trying to fight it off with rest and fluids. These things typically have to run their course but I am wondering if I should call my PCM or nurse at CC and let them know? Any thoughts?
Good morning heart brothers and sisters! The countdown is on. So much to do in so little time. Perhaps this is a good thing. Keeping busy preparing for surgery! I am painting my bedroom this morning so I can enjoy a fresh new color on the walls when I return.
After much research, several consultations, weighing my surgical procedure options, and prayer...I have decided to have my mitral valve repaired by Dr. Marc Gillinov at the Cleveland Clinic. He was actually the first of the four surgeons to review my case. I didn't mention him at length in my earlier journal postings because I did not have a face-to-face consult with him. His nurse simply called with his recommendations and to inform me of available surgery dates. When I started this whole process, it seemed a bit odd to schedule a surgery without meeting with the surgeon first (even if he is at CC). Nevertheless, CC was always on my radar as an option.
I guess what really helped me come full circle was discovering that I am a candidate for robotic mitral valve repair. Several weeks ago I was leaning toward a mini-sternotomy, but after learning more about robotics in the hands of the right surgeon, I decided that this is the way I wish to proceed. I feel pretty confident that any of the surgeons I interviewed could have done a great job at repairing my valve using the methods they do the most and feel most comfortable with. But since I am going to go with a robotic repair, I feel that Marc Gillinov is clearly the best choice for me. I am scheduled for pre-op testing on November 24 and 25. My husband and I will meet with Dr. Gillinov and the surgical team while we are there. My surgery is scheduled for December 17.
I finally have the peace that many of you have spoken about. Thanks so much to all of you in the HVS community who have shared your experiences, offered thoughts, prayers, encouraging words as I've moved through this part of the process. I could not have arrived at this place of peace without you!
Good morning heart sisters and brothers. We met with Dr. Vinay Badhwar at UPMC Pittsburgh yesterday morning. He indicated that I am the "perfect" candidate for robotic mitral valve repair. Robotic repair has become the "standard procedure" at UPMC for patients (like me) who have an isolated mitral valve issue. He has a 99.5-100% repair success margin. UPMC offers traditional post-op care where you go from CCU to a step-down unit and then you are discharged. The length of stay is usually 3-4 days.
So now I am faced with a very difficult decision. Both Dr. Horvath and Dr. Badhwar are exceptional surgeons with stellar reputations. Both are offering me 99-100% chance of repair. Dr. Horvath feels that the mini-sternotomy will achieve the (safest) and best repair and Badhwar feels the robotic will.
Had a really good consult with Dr. Keith Horvath at Johns Hopkins Suburban Hospital. I was really impressed with the way in which he discussed exactly what needed to be done to repair my mitral valve. They have 99-100 % track record with repairing mitral valves and he indicated that he is confident that I would fall within this percentile. That made me feel really good. This is not to say that we didn't discuss alternatives (tissue/mechanical valves) in the event that something "out of the ordinary" happened and he could not repair the valve. We also discussed three minimally invasive approaches to surgery: mini sternotomy; mini thoracotomy; and port-access/robotic. At this juncture I am leaning toward the mini-sternotomy. I was also very impressed with Dr. Horvath's philosophy of patient care. At their hospital cardiac and critical care patients share the same unit. There are 34 private rooms. I would be in the same room from the time I come out of surgery until I am discharged from the hospital. This is the first time I have ever heard of such a thing--very appealing. So, one more consult to go before I make my final decision, but as of right now JH is at the top of my list.
I had my heart cath yesterday and other than almost blacking out in the bed while they were prepping me for the procedure, all went well! Lol! I am such a wimp when it comes to needles. The had to do an iv in both arms because they did the cath through my arm instead of the groin. They opted to give me a dose of adivan to take the edge off. Good call! lol! ANYWAY....no blockages!!!!! This means I will be a candidate for minimally invasive surgery. We go for the first of 4 surgical consults tomorrow.
I have consults scheduled with Dr. Mubashir Mumtaz with Pinnacle Health (Harrisburg, PA) Sept. 25; Dr. Keith Horvath (Johns Hopkins Surburban, Bethesda, MD) Oct. 2; and Dr. Vinay Badhwar (UPMC Pittsburgh, PA) Oct. 12. I am curious if anyone in our community is familiar with any of these surgeons and/or hospitals? If you have had surgery by them or in their facility I would love to hear about your experience. Thanks in advance for sharing your thoughts!
I received a call this afternoon. I am scheduled to see Dr. Mumtaz with Pinnacle Cardiovascular Institute on September 25 in Harrisburg. Wow! Didn't expect to get in with him so quickly...just 2 days after my Heart Cath is done. My referral authorizations should be good to go tomorrow. Will give Cleveland Clinic (Dr. Gillinov) and UPMC (Dr. Badhwar) a call in the morning and see about getting on their calendars.
Went follow-up with my cardiologist on Friday (Sept. 4). He is prepping me for surgery. I go for a chest x-ray and blood work today (Sept. 9) and a Heart Cath (yikes!) on September 23. I spent most of the morning (yesterday) on the phone with my insurance company and then my PCM's nurse trying to get the referrals I need to see the surgeons on my "short list". Hopefully those authorizations will be in place today and I will be able to call and schedule appointments. My cardiologist also sent a request for a consult with the surgeon in their group that does mitral valve repair. He is located in Harrisburg (about 30 minutes from us). Praying for wisdom in selecting a surgeon and peace about it. Such a big decision.
I am curious about the process of finding a surgeon? I have three in mind so far and plan to make appointments with them after I have my follow-up appointment with my cardiologist on September 4. I've been hearing some negative things about having surgery done at a "teaching hospital." Several friends in the medical field and even my PCP (whom I saw today) said that the likelihood of a resident or fellow preforming the surgery is high. That sounds pretty scary to me! How do you insure that the surgeon you select will actually be doing your surgery and not just there as the "attending" physician. Do you have to make a special request?
So I had the TEE done on Wednesday (August 19). Over-all it was a very good experience. The team at West Shore Hospital in Mechanicsburg, PA were awesome. They took excellent care of me. It was a long day though. I got there at 10:15 am and didn't leave until 3 pm. I was able to express my concerns about the first cardiologist that I saw in their group and was assured that I could see anyone I wished. They told me that it was important that I feel comfortable with the cardiologist who would be following me throughout this process and long after as well. Yeah! The cardiologist, Dr. Bailey, (who did the procedure) came in to meet me long before I was ever wheeled back for the TEE. He was very warm and made lots of eye contact...lol! My husband and I felt a connection with him immediately. After the test was complete, he spend some time showing us the echocardiogram and explaining exactly what is going on in my heart. The regurgitation is indeed severe. It seems that one of the "parachute" strings is actually broken and flails every time my mitral valve tries to close. This is a new development or perhaps the prior transthoracic echocardiograms (done in Seattle) didn't show the "flailing." Either way, there is a gap now where the valve attempts to close hence the severe regurgitation. He said that he would like to see me in 2 weeks (that is if I wanted to see him again!) And so I am set for a September 4 appointment. My nurse said she would take care of canceling the October 5 follow-up with the original cardiologist. When I meet again with Dr. Bailey we will discuss hospitals, surgeons, and procedures. He will also get me set up for a heart cath. Feeling like things are starting to move fast....
Received a call from the nurse yesterday concerning the results of my stress test. She indicated that I don't appear to have coronary issues (at least as far as an EKG can detect); however, she said that the cardiologist was a bit concerned that I became short of breath so quickly. She indicated that he may (or may not) choose to change the date for my follow-up appointment (Oct.5) after I go for the TEE tomorrow morning at 10:30 am. Feeling nervous...
So I met with my new cardiologist yesterday. Seemed like a nice man but he hardly made eye contact with me and my husband throughout the visit. Made me feel a bit uncomfortable. I am scheduled for a stress test next week and should be getting a call today to schedule a TEE. I have a post-TEE follow-up appointment scheduled on October 5.
I was diagnosed with mitral valve prolapse in May of 2014. At that time, my cardiologist did not feel that the regurgitation was severe enough to warrant surgery. He did tell me though that eventually I would need surgery. It was not a matter of "if but when." Until then, he planned to keep me on a "short leash" and "watch and wait" for any changes in my heart. On June 3, 2015 he told me "it's time."