I had to visit the ER last Monday. A-fib with RVR. Apparently my heart was doing 189 in an 75 zone. Lol. Now I'm on Flecainide. Seeing cardiologist tomorrow. When I went to the ER I've not felt so bad since before my surgery 6 years ago. Doing better now. I hope it lasts. I would love to talk to someone with a similar experience.
It seems that I have developed an irregular heartbeat. I have had several episodes of A-fib that concern me. I will be having a new echo at my next doctor visit. Don't know what to expect. Worried that the valves have worsened.
Just wanted to check in on my anniversary. One year ago today I was in surgery to have my mitral valve repaired. I am doing great with no problems. I am barely on any meds for my heart (just very small dose of beta blocker). My legs don't swell any longer, I don't have panic attacks, and my energy level is 100% better than before the surgery. I really thank my Doctors and the Cleveland Clinic in Cleveland Ohio. They changed the course of my life. My advise to all those of you who are about to or have just had surgery, trust in your faith and doctors. It is so worth it!
I am doing really well...cardiac rehab is hard but definitely worth it. I can do 40 minutes of cardio (treadmill and bike) and then light weights. Before the surgery...NO WAY!
Is there anyone out there that is trying to get the AHP Diet Drug Settlement to pay a Matrix Claim for their Surgery????
If so, please let me know how it is going. I just received a letter from them wanting ALL my medical records from 5 years prior to my taking the stupid drug. That is going back to 1991. Let me know... if you have any info on this.
This year is a special Thanksgiving for me as I am sure it is for all of you have been blessed with a successful surgery.
My wish is that you all continue to thrive with your new "valve Job", and all of you who are awaiting surgery will have a terrific recovery and be better than ever.
I finally started rehab and while it is a little tiring I feel so much better getting everything moving and building up my strength. I sometimes get the feeling that I have been flown back about 10 years before all my heart valve problems started. I am so greatful to all of the wonderful doctors who have helped me. Linda Stahl
It has been 2 months and 1 week since my surgery and I feel terrific. I am better than before the surgery and anticipate great things as soon as I get my cardiac rehab under way which should be very soon. I traveled back to Arizona from Ohio this last week and the trip was no problem. One day we drove over 700 miles and I was fine. My only symptom is weakness and some fatigue. I don't get winded like I used to and recover much faster than I can remember.
Two months ago, I would not have believed how well I have recovered. I go to my Arizona doctor on Nov. 1st and should get a schedule for my rehab, which I am excited about.
Is there anyone who is on a bowling league. If so, I would love to know how long before that activity is possible. I have a sub filling in for me and really want to find out when that activity will be safe for me so I can let her know.
This morning I met with my cardiologist at the CC. I had an echo which showed that my very leaky tricuspid valve was back to it's pre surgery leak rate of 2+, which the Doctor was happy with (it had gone to 4+ from fluid I was retaining. He said that my heart can easily handle it and he expects no more issues from it. He did prescribe a potassium sparing diuretic to take for the time being. My repaired mitral valve which was a 4+ prior to the surgery is now a very nice 1+. So I am relieved. I will begin cariac rehab once I return to Arizona at the end of October. Until then, He just wants me to walk.
Five weeks today and I cannot wait until I am no longer dependent on my friends and family to get from point A to B and back. This is the longest I have ever been so needy. And it is worse when those you run around with are still raring to go and I am too pooped to keep up. I am not complaining because every now and then I feel a glimmer of what life will be like once I am recovered. Right now, it's just moments when I can see myself being able to do things that have slowly slipped away from my abilities. Today, I walked farther than ever without feeling tired. It was inspiring and I will keep walking farther and farther.
Last night my husband packed me up and brought me home from Sister's house, where I have been staying since leaving the hospital. I really am glad that I was able to stay with her...she was absolutely wonderful and caring. I love her dearly. I am happy to be home and back into my normal habitat. I suprised myself by how much I did yesterday. Went to lunch with a dear friend, a little shopping and then moving back home and putting most of the things away myself. All with no pain meds. I did take a tylenol today, but except for sneezing, coughing and burping, I only have a dull pain in my incision area (mostly itching). I hope all my friends in HVJ have a wonderful Labor Day weekend.
May God Bless.
Yesterday I had a follow-up with the nurse practitioner at the CC. She was very pleased that I had lost all the fluid (and a couple of pounds of flesh). I am feeling much better. I walked all over the Heart Center from the parking lot and back and didn't have to stop to breathe. It was so encouraging. I don't go back until 9-21 for a visit with my cardiologist. Still taking lasix once a day now with potassium. Each day I try to do a little more than the day before. I feel mostly just weak, like a baby kitten. So for just under 3 weeks post surgery, I can't complain. I am still a little anxious about my tricuspid valve since it was 4+ a week ago. The CC said it was probably from the fluid still in my body (she said it was not around my heart). She did say I was in congestive heart failure last week and she was worried about me. I really cut out the salt and that did seem to do the trick along with all the lasix.
No more problems with a fib. Increasing my toprol to 25 mg x 2 times day did the trick. Also, I lost all the water and now I can walk without feeling like a train in on my lungs. Tomorrow I go back to the CC for a check up and hopefully the 4+ regurg on my tricuspid is back to where it should be. I was so scared last week when they told me that, I thought, why did I have this surgery if they didn'tfix everything. Everyone reassured me it was the fluid around my heart causing the problem, but I was still devesated that I went through all this for what? I just have to stop feeling that way and trust that I went to the best hospital possible and had the best surgeon possible and let nature do the rest. I believe that going on the no salt (well, almost no salt) diet is what really did the trick along with the massive lasix meds). I can now walk without stopping although I am weak so my total distance is far less than I had hoped. It will improve and I feel very good. Linda Stahl
I had a scare on Monday...A Fib... went to hospital in the ambulance as my hR went up to 140+ while I was just sitting without a care. They increased my Toprol.
When I went to my 1 week check up at the CC, they found out that my tricuspid valve is now leaking at a whopping 4+ (after surgery -they did not repair this one- it was a 2+). I was so upset and disappointed. They told me they think it is because of excess fluid from the surgery causing this leak. I am on no salt diet with extra lasix (40 mg three times per day). If it is not gone by next tuesday they are going to admit me and drain it out of me. I keep having flutters in my heart that are so annoying. Right now I am discouraged. I can barely walk 15 steps without stopping to catch my breath. Linda Stahl
For my one week anniversary, I got a very special gift....my first great grandchild. A very sweet little boy. I am continuing to have the nerve pain in my thigh. From what I could find on the internet it is something called meralgia paresthetica, which is a compression of the nerve in your outer thigh. Don't know much more than that. Has anyone had a similar encounter? I am struggling a bit with sugar issues. They put me on a diabetic pill (I guess everyone at the CC who has heart surgery gets this treatment to prevent infection). I had never had a bad blood sugar reading before the surgery, but I guess my HC1 was a little high. Time will tell on this issue. I am sleeping very well, although almost sitting up. It just feels better that way. I really have no complaints, just my brain wants to do so much but my body is a big no no.
I am improving in strength each day. I slept really well last night. Funny, but even though I was very tired, I was not as tired as before the surgery. My heart seemed more rested. I was up from 6:00 am until 10:00 pm with no nap. That never happened before surgery. I feel fairly weak but I think part of it is due to the diabetic meds they are giving me to keep my sugar really low (tests have proven to them that you heal much better that way as bacteria attacks more when your sugar is high. I have never had a bad reading prior to surgery so I am not concerned. It does seem to make me tired and lethargic. I have been having nerve pain in my right thigh that really stings. feels like someone is putting a hot frying pan on my leg. It comes and goes so I will be happy when it finally leaves. My incision is between 8-9 inches which is longer than I anticipated. They repaired my mitral valve once with a ring then took me of the heart long machine. It wasn't a good fix, so they put me back on it and did some fancy stitching. I got to come back to life twice that way. Also, my surgery was held up after they started to cut, so they wrapped me up in orange saran wrap stuff and chilled my heart for a few hours before they started the surgery. Of course, I did not know any of this was happening. (thank God) I guess that happens frequently. Thanks for all the well wishes.
Hi, I am Linda's sister Carol and she requested that I give an update in her Journal on her heart valve surgery. Well she had the surgery as scheduled on Friday and I am so-o-o happy to report that all went well and they were able to repair rather than replace her Mitral Valve and the Tricuspid valve. She went from the ICU to the step down private room just 16 hours after the surgery. A record according to her nurse in ICU. She is progressing better than expected and hopfully will be going home on Tuesday the l7th or Wednesday the l8th at the latest. She will be staying at my house to recover and get her strength back and at that time will write more.
Today I got my dental clearance with no problems to report. I spent the day with my best friend, Judy. We had a great talk and she prayed for me at lunch. I was a little down and it really helped me over it.
CC called and told me to report on Thursday at 7:30 am for my TEE. DR. McCurry wants to see my valve up close and personal before the surgery. I am really hoping that it will be repairable. Reason being, 1. It will be my valve. 2. It can last indefinitely, as opposed to the biological choices (which he told me only last 10 to 12 years on average). Two pretty good reasons. So I have been praying for that outcome. My husband and I are staying in Cleveland Thursday evening so we will be close for reporting on Friday. It is about an hour drive but if I get the 5:15 am time slot, it would really mess up Doug's sleep. Tomorrow I will spend with my Sissie's and we are making Fried Green Tomatoes and practicing our hobby of beading.
I am not superstitious, in fact, I always have been found of Friday the 13 and have never had a bad thing happen on that day, so I am thrilled it is coming so soon.
I will be going to the CC on Monday for Pre OP tests and meetings. Then on Tuesday, I will go to the dentist to get an all clear for surgery (required). I feel so relieved and excited to get on with this process. My doctor is going to be Dr. Kenneth McCurry. I have heard all great things about him.
I just got home and boy, that place is sooo great. They have everything in one building for Heart Patients. After registering, I was sent for an EKG, then a lengthy time with the nurse who took all my info and entered it in the computer. Everything there is electronic and very cool. Then I met with the cardiologist's nurse who requestioned me and examined me. The cardiologist then came in and we talked about the surgery issues and he examined me. By the time I was done with all of that (no waiting time at all it was bang, bang, bang....) I was taken for my echo, which after having had about 10 echos in the last 10 years, was the most comprehensive and extensive echo ever. I was then given a 3-d echo before I was dismissed to go to my surgeon's appt. I grabbed a bite to eat on the way, and then we did have a little wait before I met with Dr. Gillinov. He said I needed surgery, but that it wasn't urgent... I could have it in 2-3 months. I explained to him my time frame of staying here until Oct. He is checking to see if he can free up a time and if not, he will refer me to another surgeon. So, now I wait again for a little while. At least I know what is coming.
I have been trying to keep busy so as not to dwell on my upcoming appt. which will reveal what is in store for me. My husband and I are going to stay in Cleveland Monday night as my first appt is at 8:30 and they want us there a little early since I am an new patient. I am totally prepared to have surgery to fix my valve. If I had any doubts, my trip 2 weeks ago to New York City resolved them. My legs swelled up like balloons and I got red spots all over them nearly up to my knees from my ankles. I was quite scared as this had never happened before. I am sure it is because my heart is just not working up to snuff. I will be posting my results on Tuesday when I get home. Wish me luck as I am hoping for the Doctor to say my valve can be repaired rather than replaced.
Just got a packet in the mail from the Cleveland Clinic. Boy, they have their act together. I will be spending all morning into the afternoon, getting my echo, meeting doctors and finally meeting with Dr. Marc Gillinov. I started crying when I got it in the mail. Don't really know why, but lately, I have been very emotional. I guess because this is all becoming very real! I have had some new symptoms lately. I went with my son and his family to New York City last week and thought I would die there. My ankles swelled so badly and broke out into a red rash that extended up almost to my knees. Never had experienced this before. It was really hot and humid and I walked too much. Ended up staying in the hotel room half of the time. I was so upset because I felt I was holding back their family. I made them go without me. I don't think they realized that I am not the same "Mom" I used to be. I so wanted to be full of energy but I just didn't have it in me.
Cathy from the Cleveland Clinic called me and said Dr. Gillinov had reviewed my records and is requesting me to have an echo there ( mine is almost 6 mos. old)and then meet with him and another cardiologist to discuss things. That should happen within two weeks (her estimate). So I am waiting for the appt. time.
I am waiting for word from the Cleveland Clinic. I expect to hear sometime around the middle of July. All the records finally came and the report that was sent with my last echo said all my heart chambers and particularly the mitral valve were normal in construction which I hope means I could have a repair rather than a replacement. So it looks like my only problem is with the leaking mitral and tricuspid valves. It was good to hear that. Hope everyone had a wonderful 4th of July.
FINALLY I sent my records to the Cleveland Clinic for Dr. Gillinov to evaluate. I did not have the DVD's yet, but my doctor's office sent one on Tuesday and the other is supposed to be in the mail to me and I will forward it as soon as I get it.
I felt so relieved to finally be able to send them. 5 weeks waiting for stupid records is unbelievable. Now I just have to wait to hear the verdict.
Frustrated... It has been since mid May that I contacted my Doctor to get my records so I can have a 2nd opinion. I have not heard a thing. I emailed her today and hopefully I will get a response. Did anyone else have trouble getting records? Did you have to pay for them? I have been very anxious ever since my chat with Dr. Gillinov. He really got my attention. Hopefully, I will hear from my doctor before the weekend.
On Wednesday, I participated in a live chat with Dr. Marc Gillinov of the Cleveland Clinic. My question to him was that I have had mitral valve regurgitation and pulmonary hypertension for 10 years and although my doctors said I was not ready for surgery, I wondered if I should have a second opinion. His answer was that if I have pulmonary hypertension, the time for surgery was now and that I should have it within 3-4 months to avoide progression of the condition. I WAS SHOCKED! Does anyone know why my doctors would not think that pulmonary hypertension is something that should be addressed sooner rather than later? Needless to say, I am in the process of obtaining my test films and records so I can set up an appt for a second opinion. Any comments would be greatly appreciated.
I do not need surgery at this time, as the heart cath showed that my valve was not as bad as described on the echo. My doctor told me that my symptoms (tired, dizzy spells) can be helped by losing weight and changing my RX's. So She took me off the beta blocker and put me on a calcium channel blocker. I started going to the YMCA and so far I have lost 1 pound. She wants me to weigh 140 and I am 5'7". That will make me really skinny, but I have vowed to do my best to get as close to that as reasonably possible. That is going to be really hard, but all I can do is work at it. I am so happy that my valve is still good enough and I do not have to go through that surgery. She could not promise that it won't need surgery sometime in the future, but all I can do is try to get in as good of shape as I can, and if that day comes, I will have a better recovery. Wish me luck with this challenge. I have to lose 68 pounds to get to her goal. (my goal is really 48 pounds)
As I have been coming to terms with my reality, I was wondering if any of you are victims of phen phen. I took it for 7-1/2 months under close doctor supervision . That is my story in a nutshell. I would love to hear about your journey. For many years I have been stable but this last echo brought the reality of that deadly drug to center stage. Linda Stahl
I have an appointment next Wednesday (17th) and I should know the answers. I have been seaching the web quite a bit. It is really overwhelming...all the information. There are just too many websites and statistics that are mind boggling. I was told by the doctor who did my heart cath that the hospital does NOT do minimally invasive surgery. Does anyone have a comment on the pros and cons of standard surgery vs. minimally invasive? I really appreciate all your comments and advise. Thanks, Linda
Today I had my heart cath. It went very well. I had a terrific medical staff attending to my every need. The results were very encouraging. I have no blockages in my arteries and my heart is as strong as an 18 year old (the doctor said so!!). I do have increased pressure in my left ventricle but aside from the mitral valve regurgitation, everything is good. I have an appointment next Wednesday with my Doctor and all indications are that I will be having valve surgery soon. Knowing that my arteries are clear is a tremendous relief.
This is my first posting. Can anyone fill me in on what to expect during my heart cath. Also, what does a doctor mean when they say they don't want to do the valve surgery too early or too late. Thanks,