April 26th was my 2 year anniversary after Mitral Valve Repair and a "new" heart! It has been a good year and I feel great. I breathe and feel so much better. The scars remind me of surgery and what I used to feel like, and to be thankful for each day God has given me. It's easy to take your life for granted... until you put it (literally) into the hands of others. I am thankful for the advances in medicine and for talented surgeons who are willing to give so much of themselves to help others. Thanks to all my Heart Valve Pals who encouraged me and provided information and education along the way. Each of you have a special place in my heart!!!
For those of you recovering or facing surgery, stay strong and keep a positive attitude. It will be a tough road for a while, but so worth it!
It's been a year since my mitral valve repair, and like others on this site, it's kind of a tradition to "check in" and give an update. It's been a great year and I feel great. Thinking back to surgery day brings back many memories. The best one is the memory of my husband, children, and sisters all being there for me, supporting me, loving me, praying for me and caring for me. I dreaded that day, and spent many hours on this site researching and reading about others that had gone through the same, or similar surgery before me. I learned so much through reading others journals, and it gave me the strength, courage and information I needed to get ready for surgery. I still check in now and again, but as the months go by, and my scars fade, it's been less and less. I feel good, I can breathe... climb stairs without getting out of breath....take walks and exercise without my heart pounding in my ears!
For those of you facing surgery, do your research, be strong and stay positive, it's really not as bad and scary as you think it's going to be. Do your walking and breathing exercises, take your pain pills, accept help from others. The waiting is the hardest part, and the mind and your imagination are your worst enemies!!
My scars are fading, I have occasional twinges of pain and slight numbness around them but most of the time I forget they are there. I won't, however, forget the encouraging notes from fellow HVJ on this site throughout my journey. Even though I haven't met any of you, I feel like I know you well. Thanks to Adam for providing this site, and for his on-going research into the valves of the heart!
I'm anxious to read updates from those of you that had surgery about this same time a year ago!
Now I know what it feels like to be rejected!! I've been turned down for additional life insurance based on my recent heart surgery. I thought it would be a good idea to increase the amount we take out for life insurance when we had the end of the year sign-up at work, so I sent in the up-dated application, which included a "yes" answer to the question have you had recent treatment or surgery for your heart? I was truly shocked when I received a letter in the mail stating that I had been turned down based on my answer to that question. For a while there I actually forgot that I had heart surgery, but that letter brought it all back very clearly. I was disappointed, but the realization that "this is my life now" hit home. It's okay, I can live with it.
I am feeling so much better, and my recovery went exceptionally well. The numbness on my right side is almost gone, the scars are still there, but fading. It has been almost 9 months since my surgery and I don't regret any of it. I'm using the Mederma cream on my scars, although I'm not sure it's helped much. The one scar on the incision that took forever to close, is still pretty purple/red, but the others have faded to pink/white.
I had my yearly eye appointment last week and was pleased to know that my eyesight hasn't changed any since last year, I had been worried about it because I still have fairly frequent ocular migraines. The Dr. said not to worry about it, so I won't! I'm trying to stay active, and looking forward to spring and warm weather again. Last year at this time I was just starting this Heart Valve Journey, and I'm so glad that it is behind me. God has been good to me, I'm enjoying my family, my grandsons, and my work. It's true we don't know what the future holds, but we know who holds the future! Thinking of all of you just starting on this journey, and thankful for the ones that have traveled the road with me and for the support you have given. Stay in touch! Stay strong. ....and the beat goes on.
Sorry it's been so long since I've journaled. I've been busy with work,family, and life. Some of you know that I have been
battling with the insurance company since May over a co-surgeon fee of $15,377.00 that they state wasn't covered. I went through all the levels of appeal, and contacted the Insurance Commissioner, along with my surgeon, Dr. Burkhart. It has been looming over my head this past month, and I had given up hope of any settlement on the bill. As a last resort I emailed my surgeon, asking for his help and if he had any publications that would help plead my case with the Insurance Commissioner. I had no idea whether he would even get the message, or if I would hear back from him. Imagine my surprise when I received a phone call from his secretary yesterday! She said that they had removed the fee from my bill and I would not be responsible for it!! Hallelujah! God is good. Thank you to everyone that gave me suggestions and/or advice and thanks to Adam for his help!
My scar is still purple/red, but healed well. I continue to have numbness in my right breast and right side, and I get those ocular migraines once in a while, but over-all I feel great. I have noticed that I'm having a harder time remembering certain things, does anyone else feel that way? I want to thank everyone for your support, this journal is a wonderful support system and I still check in frequently. My thoughts and prayers are with those that are waiting, healing, and those looking at re-operations. Happy Thanksgiving!!
Those of you that have been through the surgery and recovery, I have a question about the cost of your surgery. I am getting ready to try and appeal a denial on my claim and am curious what the fee was for your surgeon and his assistant? My insurance company has denied the bill for one of my surgeons, they say it doesn't cover "co-surgeon" fees. I plan to investigate this further, but also wonder what the "normal" fee for the lead surgeon in a case like this is. Any advice or input is welcome. If you don't feel comfortable putting it on this journal, you can email me at email@example.com
Thanks in advance, and thinking of all you! Keep posting those updates!!
After 4 months I can finally post the all healed journal entry!!! My reaction to sutures has been quite a journey! It has tested my patience and been very frustrating, but thank God for healing and hopefully this part of the journey is over! I stopped packing the wound about a week ago, and it's closed over now. I see my Dr. on Thursday for hopefully my last Dr. appointment in a while. I have been going almost every other week so he can keep an eye on it. I did end up sending pictures and a letter to my surgeon in Rochester, and they said I was doing everything right, that I didn't need to come back to see them. He made a recommendation to clean it with diluted Hibiclens, and continue the wet to dry dressings, which seemed to help. It has been so nice to skip those dressing changes every day!!! I still have some numbness around the incisions, and in in my breast, I wonder if that will be permanent?
I am feeling great, like many have said before me, I don't even feel like I had open heart surgery, and sometimes forget that I did, where several months ago, that's all I could think about. People ask me less and less how I am doing, and that's fine with me!
We found out last week that the insurance company is denying a $15,000 charge on the bill, so my next challenge will be to do battle with them. Does anyone have any suggestions or helpful ideas to get through this? I've asked my surgeon to send a letter of medical necessity to re-submit the claim.
Oh yes, I almost forgot! I am a grandma for the 3rd time, my daughter had a little boy August 7th, his name is Thomas!! Thoughts and prayers for everyone that are about to have surgery and those that have reached the summit.
I check in here on a regular basis, even though I don't update very often anymore. Thanks for all the encouragement and friendly comments. The bond we share it "truly from the heart"!!
Wow! Did I really just type that? Where has the past 3 months gone! I guess now I fall into the group of "old-timers"! although I don't feel like it's been that long. 3 months out and I feel so much better than I did at 2 months. I feel so energized!! I guess I didn't realize how fatigued I was before surgery. My chest doesn't ache anymore, and I'm able to go up 2 and 3 flights of stairs without any pain or shortness of breath. I can take deep, cleansing breaths and fill my lungs to capacity!! The 12 hour shifts are not a problem anymore. In fact, I've been wearing a pedometer to work and walk an average of 5-7 miles a day just at work! I'm so grateful for the support and advice; the education, (especially from DVB) that I've gleamed from this site. Thank you!!
Last issue: incision is not quite healed over yet, it is about 1.5 cm deep, and only 0.25 cm in length, open just enough to still get a "wick" in to keep it healing from the inside. I was really hoping I could post that "all healed up"!!!! journal, but that will have to be for another day. Dressing changes have become a regular part of my routine, just like brushing my teeth!
I am still not able to wear a regular bra, actually the Aah bra is pretty darn comfortable, I may just stay with it! Thanks, Nancy! I'm taking vitamins, magnesium, eating healthy, and carrying hand sanitizer in my pockets!! oh... and positive thoughts!!! Thinking of everyone about to climb the mountain and those that have reached the summit.
Hi everyone, it's good to read all the updates and follow everyone's journey. I'm thankful for the support and information I get from being a part of the HVJ family! I'm doing great 7 weeks post-op. Started back to work last week, and it was tough. I work 12 hour shifts and had no idea how hard it would be the first couple days. I was so tired, my feet and legs ached at the end of the day. I was ready for a nap 1/2 way through!! I guess I didn't realize how weak I had become. I'm glad that I was doing cardiac rehab, or I never would have made it!
I'm also able to sleep on my side again, which feels so good! There really isn't much pain anymore, but still some numbness. Maybe the pain will start up after the numbness goes away? I'm sleeping well at night, and am "almost" back to normal. Now if this incision would just heal up, I would be fantastic!
It seems like it has taken forever to get my resting heart rate back in the 70s, it's been in the mid 80s and 90s at cardiac rehab, but today they finally documented it in the 70s!! 6 weeks post-op, feeling better every day, and have not had to take any Tylenol or Ibuprofen for 48 hours!! I was starting to think I would never get over the soreness and aching, but it's finally happened. I do have some discomfort at the incision site that is "still" open, and I have numbness in my right side, parts of my breast, and my right upper thigh. Occasionally I'll feel the tingling of the nerves waking up/reconnecting. Next week I get to stop the coumadin, and will no longer be on any medications, Woo Hoo!! I'm really enjoying the cardiac rehab, rotating through 4 different pieces of equipment, hopefully establishing a pattern for the rest of my life! okay..... incision on my right side behind my breast between my ribs..... still having to pack it using wet-to-dry dressings now, doctor says it's healing, and I'm getting frustrated. Thank goodness I'm able to do the dressing changes myself. He jokingly said it's because I'm a red-head. I didn't see the humor in it. I can still feel pieces of sutures through the skin. Will definitely keep this in mind if I ever need surgery again. (hope not) It's good to read all the updates, thankful for the ones that have made it through surgery, and thinking of those with it coming up!
5 -1/2 weeks post-op, time to get back to my "other" life!
Journal posted on June 1, 2012
I had my one month echo and chest xray results given to me today at the appt. with my cardiologist. Everything looks and sounds great, with only "trivial" mitral regurgitation, which he says is normal for anyone undergoing repair. Most of my pain is gone! I'm still having to change dressings on my right incision between my ribs, it seems like it's taking forever to heal, but it has been my only "bump" so far on this road to recovery. Our local surgeon is keeping track of it and says it is healing, just slowly! I'm half-way through cardiac rehab, and have been enjoying it! I have been given the "all-clear" to return to work next week, at 6 weeks post-op! There have been days of feeling "depressed", but I am aware that this is normal, and feel like I am handling it. I'm a pretty social person and being home all day alone has been a trial for me! I am sleeping very well, and am enjoying my daily walks, 2 miles a day. I haven't been able to put anything on my scars/incisions yet because of the slow healing process, but look forward to doing that soon. Thanks to everyone on this site for all the helpful insight and support, it makes such a difference. Keep Posting!
It's hard to believe one month ago I was in surgery. The time has actually gone by fast, although there are some days that drag on.....I am feeling stronger and have more energy every day. the infection in the incision set me back a little, but am doing much better now! I still have to pack it daily, and let it heal from the inside out. Finished my antibiotics today, and tomorrow I will have my one month follow-up echo to check for leakage!
Some thoughts about the past month:
-Ice chips are the best thing in the world!
-Pain and numbness are a constant, at different levels each week, but still feel that stretch and pull with movement!
-pillows are wonderful
-Recliners are an important part of my day
-walking feels really good
-still waiting to be able to sleep on my side
-Opening car and other doors is not fun
-It's good to have time to read again
-sometimes the days get long
-thankful for this site and for my "new" heart!
It appears that my body does not care for the sutures that were used to close my skin incisions, and is trying to "spit" them out! First the one in my groin, then several days after that my right 3" incision between my ribs opened up on one end with a stitch protruding, then several more stitches started coming through my skin. So back to the Dr. I go, and he cut out a knot from my incision that had opened up, but it is also infected, as alot of stuff came out. So now we are packing it daily and I'm on antibiotics. Ran a fever for a day but am better now that I'm on antibiotics. They say there is no way I could have avoided what is happening, and I just have to be patient while they heal. I hope nothing else opens up!!! Supposedly all the deeper sutures are okay and Dr. said not to worry about them. Has this happened to anyone else? More pain now on my right side. Other than that I'm doing great!!!! The culture from my groin was negative, but still waiting on the results from the other incision.
btw, posted a few pictures!
I went to the Dr. on Friday because my groin incision had opened up at one end and there was a stitch coming out of it. He tried to remove it, but ended up just cutting out what he could, took a culture, just to be sure there isn't any infection and did some blood work, which all came back normal. Still waiting on the result from the culture, but since I haven't heard anything by now, I'm assuming it was ok, thank goodness. He said it should heal up without any other interventions. Since then, the incision on my right side also opened up a little and has been draining quite a bit. I don't see any stitches coming through, but have been able to get quite a bit of drainage out by pressing around the incision, and now it is quite a bit softer! Will try to keep it clean and dry, and continue to watch it. Also, the small incision under my breast is healing well but just noticed last night that part of a suture is protruding from that as well! What the heck?? Otherwise things are going well, enjoying cardiac rehab, and continuing to feel better every day. Still have the numbness in my groin and breast area, but less and less. Tried going 24 hours without tylenol or motrin, but not quite ready for that yet!! Saddened by the news about Cindy P. It makes you stop and think. Prayers for her family.
It will be 2 weeks tomorrow since my surgery. Let me tell you, today is so much better than a week ago, and each day gets better. I've been cleared to start cardiac rehab tomorrow and looking forward to that. Trying to walk 2 miles a day at a slow pace, staying in tune to my body and heart rate. Fortunately I have never had any issues with my blood pressure since that first day post-op! I'm wondering how long I'll be stiff and numb on my right side and breast? Some of the feeling is back, but not all of it, which I thought it would by now. Trying to do stretches like Paul suggested, which helps. Yesterday the incision in my groin opened up a little and I think there is a stitch trying to work it's way through. Drainage is clear/pink and minimal, so trying to baby it and keep it clean today, will see if it's worse tomorrow I'll call the Dr. The moving and walking probably doesn't help, but that is necessary too, right?!
Went to my cardiologist yesterday, he said everything is looking good and I'm doing "great"! I have more energy with each new day, and am breathing so much easier. My side is still sore, but not near as bad as it had been. Enjoying time with my daughter this weekend, she came to visit and is helping out with some of the household cleaning! Also got clearance to start cardiac rehab on Wednesday, so looking forward to that! I have to remind myself to not over-do it, that there is still potential for many things to go wrong, but keeping the positive attitude up! It's been very hot here in Kansas and had to break down and turn on the air conditioner!
Thinking of those having surgery this next week.
Hard to believe one week ago today I had surgery.....all that worrying and preparing! Things are going well, I went to see my primary physician today and all looks and sounds good. I had to adjust my coumadin for the first time, no big deal. All the tape has come off my incisions and they are healing well. Still red and bruised, but no drainage! I'm able to get in and out of bed without any help or much discomfort and pain is still being controlled with Tylenol and Motrin. I haven't felt any "funky" heart beats or rhythms, but know that it is still possible. It's still hard to take a deep breath and have that constant aching in my chest and right side, which I've gotten very used to. Dr. said maybe I can start cardiac rehab in another week. Thinking of James today!!
Had a good day today, was able to sleep in my bed with pillows propped behind me, which felt good. Pain is still being managed with alternating tylenol and ibuprofen. Had lab drawn today and no change in my coumadin dose for now, went to the park and walked for a while, until I was too short of breath and it felt like my heart was beating against my chest.! Saw my grandsons (3 and 1 years old) for the first time since surgery which brightened my day! Took a long nap this afternoon which felt good. Thank you everyone for your thoughts and prayers!
It's hard to believe that a week ago we were packing for our trip to Minnesota, and now the surgery is behind me and we're back home already! I was dismissed Saturday around noon, everything checked out okay, they lowered my coumadin dose since my INR had risen to 2.6 from the day before (1.2). Other than the coumadin, I'm only taking a baby aspirin and Hydrochlorithiazide daily. My "robotic" incisions are very bruised and swollen, the right side of my body feels numb, and yet like it's been squeezed by a clamp that won't stop squeezing. The right side of my neck is very bruised and tender, and the entry port for the chest tube is still draining a very small amount of drainage. I'll have to watch it closely!. It did feel good to finally get that shower on Saturday!! I have several "tape burns" on my right side where tape pulled my skin off, and my right femoral groin incision is bruised but not sore at all. I tried to remember how many Lab "sticks" I had, and I think it was about 6. Not too bad! We drove home today, stopping every 2 hours to walk and stretch. It wasn't a fun trip by any means, but it was do-able. It feels good to be home, and am planning to relax for a little now... it's been a busy week! Of course I'm continuing the tylenol, motrin, and the incentive spirometer, and the walks....
For those of you with surgery coming up...you really won't remember any of it, so don't worry about that part, and just stay motivated to get up out of that bed and walk or move as often as you can!
Hi everyone, I'm finally feeling up to getting on the computer again . Thanks to my family for keeping you updated, I don't remember much about surgery day, just like everyone said . I do have to confess though that the reason I was moved out of ICU so quickly was because they needed the bed and I was the one doing the best that they could move out! Yesterday was a rough day because of the Dry Mouth and nausea that everyone talks about....paul, they wouldn't give mr applesauce because I kept throwing up. I have always had trouble with anesthesia though. My heart rate was pretty low all day, in the 40s and low blood pressure . Hardly any urine output which had everyone worried . Finally last night about 11pm they gave me some lasix and things started working! Today was much better. Real food! No nausea, regular heart rate and blood pressure. Chest tubes out late morning, wasn't as bad as I thought it would be! Lots of TLC from my family! Repeat echo this afternoon with no regurg. And it wasn't that bad. Hopefully home tomorrow if chest X-ray is ok in am!
Mom had a super night last night! Her blood pressure returned to normal, and her diuretic output increased enough for them to remove the catheter! Today she got the chest tube and neck iv taken out around 11:30am. She is starting to eat more solid foods and has color back in her cheeks :). Her pain level is at a 3 and she is only using Tylenol and Ibeprophin. We are expecting an early dismissal tomorrow (Saturday) morning!!
She is currently down in Radiology for her ECG.
Mom really appreciates your comments, prayers and support through all of this! She is ready to get on and update this blog herself!
Holly's recovery continues to progress well. She remained in ICU for only 3 hours and then was moved to a cardiac step down unit. For the type of surgery she had, the ICU staff was very impressed and thought she probably had set a record for the shortest stay in ICU:). By about 1000pm, they had her up and walking a short distance. Nothing can keep Holly down!! Her night was somewhat disruptive with alarms, bells, nausea and general discomfort. Her blood pressure dropped throughout the night to where they needed to give her some albumin. It is still on the low side today, and they are monitoring her closely. She has a strong will and strong desire to get through this time of post surgical discomfort and move on to the healing process. We pray for God's continued healing hands and for minimal pain and discomfort. Her family is with her and supporting her. We appreciate all of your prayers, thoughts and well wishes.
Mom headed back to the OR around 8:35am. They gave her an anti anxiety pill (ativan) to help relax her. Her surgeon did a heart transplant on a 3 yr old this morning which pushed her surgery back a little.
She is very confident in her surgeon and ready to face the surgery with peace. Look for a few photos we posted!
http://lifepowellstyle.blogspot.com/ (you can find pictures here)
Pre-op all done, met with the surgeon and his nurse, and everything is set for the morning, to report at 0700 for surgery at 9:00 a.m. Dr. Burkhart was very positive and patient with me, and I felt so much better after talking to him. I'm ready to do this and start the road to recovery! My daughter will post for me tomorrow and keep you updated. Hopefully I'll be back before you know it!! Time to sleep!!!!
I really should be sleeping, preparing my body for what's ahead. I just can't seem to shut down my brain. Maybe it's on overload after riding in the car for 8 hours and having all that time to read and research, thanks to the Ipad! At one point, I started feeling nauseated, so dug out the huge packet that Mayo had sent me and listened to the relaxation CD that was included with it. It really helped and I fell asleep for a while, when I woke up I felt much better. They do such a good job trying to prepare their patients for upcoming surgery. I wish I could take my ipod into the pre-op area with me! Maybe I will ask if I can!! We are settled into the hotel, and drove around getting acquainted with the area. The hotel has shuttles all day to the Hospital and to Mayo Clinic so that should help my family be able to get where they want to go while they are here. Tomorrow is pre-op lab work, then meeting with the surgeon one last time. 2 days.......thanks Paul for the updates! Hope you are feeling better.
Last day of relaxing at home, Did i remember everything?
Journal posted on April 22, 2012
So many things to take care of and get done before we leave in the morning for our 8 1/2 hour drive to Rochester and Mayo Clinic. My head is spinning with all the details. It's time to go to bed, as I gather from reading all the journals that I won't be getting much sleep the rest of this week! I hope I have remembered everything. My 3 children will be joining us on Tuesday, the night before surgery and 2 of my sisters are flying in from NM to be with me! My husband is being so supportive and yet "quiet", as he knows there are many things that irritate me lately, nerves being on edge......
Wish I could close my eyes and fastforward through the week!
What a beautiful day. We planted what we could in the garden and some flowers around the house. I want everything to be done before I leave, and be able to come home to a house filled with new life, inside and out!!! I am looking forward to feeling healthy again, and to not have to limit my activity and feel short of breath. I know the recovery will not be easy, but am determined to do the best I can! It is so helpful to see the comments on here and follow everyone's journey.
My friends from work threw me a "send-off" party Thursday night since I will have to travel and be gone for a while. They aren't happy that they can't visit me in the hospital! It was a much needed evening of fun and laughter! We have about an 8 hour drive to Rochester, and plan to leave Monday morning. What are your experiences with traveling this amount of time after having surgery?
One week to go before my surgery. Okay, since I am writing this past midnight, it's 6 days... one of my bad habits lately, is staying up late. For some reason I have a hard time falling asleep, maybe because there is so much going through my mind, so much to do, so many emotions. Today was my last day of work before surgery. Monday the 23rd we leave for Rochester, Minnesota to prepare for my Mitral Valve Repair. Dr. Suri and Burkhart will be doing the surgery using the Davinci Robotic Method. I have spent hours reading, surfing the internet, absorbing stories from this journal site, watching videos on Youtube. I want to be prepared! I'm curious to hear how others have done with the robotic repair and recovery?!