I know how hard it can be to have setbacks, I think about the two open heart surgiers I had in two months and wonder why me? But I then know that the Lord is putting me where I need to be and I have to trust in Him. Under all the worries and stress and all the down time, there is a silver lining for each of us, we just have to be patient and let the Lord show us in His time. That doesn't make it any easier. I have struggled with depression and feeling of helplessnes while I watch everyone else living a normal life, but then I have to remember that I am still here and still able to watch my children grow. Something I almost didn't get to do. I know how hard it is and so does everyone here, please remember we are all praying for you and are all here for you. I look forward to hearing you feeling better soon, please let me know if I can do anything for you both!
Thinking about you and hoping that your on the upswing. I can understand how frustrated and upset you are, but hopefully its all behind you now and you can concentrate on your recovery. You continue to be in my thoughts and prayers.
I was so shocked and sorry to read about the heart attack and all you've been through. Wow, we don't expect things like that! Especially at your young age. I understand. Last fall, at age 50, I first discovered I had a heart murmur, which led to my mitral valve repair on 1/28/10. The surgery went great, and I was doing so well, the surgeon planned to send me home after 3-4 days. Two days later, I had a cardio-embolic stroke, which landed me back in an operating room for an interventional procedure to dissolve the clots in my brain. Thank God it worked! I still just can't believe I had a stroke. A few days after that, I was back in the OR for a pericardial window procedure to drain fluid from my heart and a cardioversion. I tell you all this just so you know you're not alone with some shocking complications in your recovery. Seems like most of the HVJ family has some complications. I think it's a reminder to everyone that, though heart surgery is very common and has amazing outcomes, it is never routine. And even minimally invasive procedures invade the heart. It's a big deal!
We are praying that your road from here on is straight and smooth and that you experience complete healing and recovery. May you experience God's peace, presence, and strength, as did we.
Although Kimberley's case is upsetting to us all, I have to disagree with David's statement below about future patients wanting to avoid minimally invasive surgery. First, we don't know how this happened. None of us are surgeons and have no idea whether this could have been avoided by any particular procedure over another. Second, one reason minimally invasive surgery is gaining prominence, is that it's designed to make surgery and recovery easier.
Like everyone else that read your latest journal, I'm so sorry for your unpleasant experience. I wish you had an uncomplicated recovery like I did. You may recall I had a piece of my ascending aorta and my aortic valve replaced on June 3, the same day as your surgery, in Manchester, NH. Although weeks 2 and 3 were wrought with nausea due to medication side effects, I've been very comfortable since week 4 and the only pill I'm on now is Aleve. My pain is so minimal now that I'm hoping to quit even the Aleve this week. All my functions have returned to normal except my lack of stamina. I'm waiting on my Cardiologist to subscribe heart rehab - hopefully this week.
Based on your terrible experience, I suspect other patients with your condition my want to look at alternative surgical procedures besides your minimally invasive mitral repair.
My best to you and David and I wish for you nothing but a smoother road ahead.
I was so sorry to read about the horror you have gone through......it is so terrible to think of all the pain and suffering you have experienced. I do not recall...did you have robotic surgery? Is this the hospital Amy Machey had her successful robotic repair? I too would want answers once I was safely on my way to a final recovery. I will be thinking and saying an extra prayer for you.
Kimberly and Dave, I too am in shock about the lack of medical attention you received in spite of choosing the best people available. I'll be honest, my immediate response was Holy Crap! Call the Lawyer.
After calming down and thinking about your situation at the very least you are owed an explanation AND an apology.
I cannot advise on what to do as you and David are the decision makers on how to follow-up. Since I work in health care it angers me that someone would actually do this to any patient.
However, I can give you some information.
In NY State there are several vehicles available for medical consumers to report the inappropriate treatment / activities of healthcare providers. Are there similar vehicles in North Carolina such as a state heath department you can speak to?
In today's competive health care world the type of treatment you received is not tolerated and the heads of medical institutions want to know about them immediately. Each hospital today usually has a Quality Department and or Patient Advocate to handle issues such as these and I would be sure to report the persons involved to these organizations. Be sure to give them a firm but reasobanble time frame to get an answer back to you.
A letter to the CEO of the institution is usually a good follow-up if the Quality Department or Patient Advocate does not follow-up within the time frame given. Send copies to the Medical Director and Chief of Surgery at the same time.
It has been my experience that a situation such as this reported to the Patient Advocate or Quality Department is immediately shared with the CEO.
Hospitals today realize that a bad patient experience is comminicated to at least 20 people by the patient through word of mouth alone. Those 20 people will individually communicate to at least 10 more individuals each by word of mouth and then those ten will pass it on to more people etc. The court of public oppinion can make or break entire programs in hospitals today.
On the other hand if this is a trend for any surgeon i.e. they had issues before maybe their methods need to be reviewed or observed. That puts a check on the surgeon's skills preventing them from potentailly harming future patients and humbles them into being more careful.
The down side is most individuals don't want to upset the apple cart so many situations go unreported.
The truth is in today's health care environment we are all forced to advocate for our own interests. That is neither good or bad - it just is.
On a positive note I am extremely happy to hear the root cause of your pain was found and you can now move on towards healing.
Kimberly, I am so sorry to read about this latest development. At least you are breathing better & they discovered that stitch, but reading about that PA was jaw-dropping. I'm sending positive thoughts your way - Joy Vera
It was sad to read your journal update at all of the new revelations that have contributed to your recovery. Like the others, I find it frustrating that your PA minimized the pain you were feeling, and now you have a diagnosis for what is probably the root cause of your pain.
Equally frustrating is that you did everything exactly the right way. You selected one of the top mitral valve surgeons in the world, seleceted a first class heart hospital and yet you still had needless complications that could of/ should of been avoidable. There is always that very small percentage of times something goes wrong no matter all the precations and planning. Thankfully you are a very strong person, and have survived all of this.
I hope that you and David continue to fight through with courage and optimism. At least now you have a good idea of everything that went wrong and needs to be addressed and you can better face each day. Your journal illustrates to others how important it is to be your own patients advocate.
My reaction was the same and Fran's . . . I was so upset by what I was reading I had to share it with Ron and then think overnight before I could respond. I still don't know what to say . . .
I'm so sorry you are going through all this. I wonder the same thing as Fran, has your pain been the heart attack all along or did they ALSO Nick your diaphragm??? I would want some answers from the surgeon.
And the PA? I have no words. Before my surgery, my cardiologist and the cardiologist and surgeon at the .Cleveland Clinic told me not to hesitate to ask for pain meds as long as I needed them. They emphasized that everyone helas differently and I was in charge of my body. The PA needs some lessons. I hate the "it's all in your head" excuse. Yes, sometimes that's true but you just had surgery with painful complications . . . Hardly in your head.
I hope now that they know about your heart attack and are getting proper t reatment, you'll be feeling better and can get on with your life.
Good Morning Kimberly & David
I read your entry last night and read it out loud to my husband as I have talked about you frequently. Decided to wait till today to write so I could gather my thoughts better. I do hope the PA who dealt with you in such an uncaring unprofessional manner will be chastised (if not more) by his boss. Does this mean the cause of your pain was this blocked artery and subsequent heart attack and not the nicked diaphragm, or is it both? I know you went to a very well know heart hospital and surgeon, when will you see that surgeon to discuss this with him? Seems you have suffered needlessly due to human error. Hope he can give you some answers. In the meantime seems like you are being cared for properly and compassionately. I, (and my bible study group) will continue to pray for a complete and quick recovery for you. Blessings from FL.
You have just floored me with your latest journal entry. I feel so bad that you went to the hospital only to be put down for how you were feeling. You obviously ran into ignorant and non-compassionate care at it's highest. Thank goodness someone took you seriously and finally got to the bottom of things.
Just knowing you had a heart attack has to have you worried but on the positive side, there seems to be a reason other than blockages. You still have lots going on and worry isn't going to be far from either of your minds. You continue to be in my prayers for a total healing - sooner rather than later.
This journal is the one place you don't have to watch what you say about how you are feeling or just plain wanting to express. While we can't all share exactly what you are going through, we can certainly relate to the fear and disappointment.
I am praying that your testing goes well and you get some positive answers.
I was reading your post out loud to my mother who is sitting next to me. When I read about you not getting pain pills, we both literally yelled out loud. I said I was going to get on a plane for N. Carolina and share mine. I had a total breakdown on Monday because I stopped taking my pain pills only because I thought 4 1/2 weeks was long enough, well I was wrong. I am in pain. Once we both got done yelling at your cardiologist PA and then cheering Dr. Ford, I read about the freaking heart attack. Well, I wish I didn't read it to my mom because we were both so sad, mad, and worried; all the things you must have felt. I guess we were kind of relieved that it was a stitch because it's not going to happen again, whereas high cholesterol, blocked arteries, etc. would've been more worrisome. I hope you get what I mean. On a positive note, I was so happy to read you can breathe easier. Lastly, don't worry about whether your positive or negative in your journal. We are here to support you through your bad times and cheer you on in the good times. I have a feeling you just turned the corner and it will start getting better. Please keep us posted.
YOu have been on my mind so much, hoping and praying that your doing well. Then I got your update. My gosh, girl, you have been through the wringer and back. But, you know what, your strong, and you will get through this. I'm glad that they gave you your pain meds. I had my family doctor renew my pain meds, because there are times that the pain gets to hurting pretty good. Sounds like the doctors will be monitoring you closely, and that's good. You want them to do that. Maybe now you can get on that road to recovery. I will continue to keep you in my thoughts and prayers.
Don't beat yourself up on what cannot possibly be foreseen. You both are doing everything you can to make Kimberly's life better and doing nothing would have been the same as giving up. Keep fighting and do not put much effort into trying to understand it all. Keep your Faith and Hope, sometimes it is all you have.
Hi Kimberly and David
Just checking in to let you know that not only I am praying for you but also my bible study group. Be strong, it will get better, unfortunately not as quickly as it could. Have you given any thought to the two questions I asked in an earlier post?
You have been on my mind a lot and hoping that your doing ok. I know that the complications your going through is a lot to deal with right now. But, it will get better. If there is anything I can do, just let me know. Hang in there, better days are ahead.
Kimberly and David - nothing is more frustrating than looking to achieve a specific goal and have it just out of reach. I think all of us have experienced that in our various recoveries.
Question? - Have you discussed the situation with your primary care doctor to enlist the services of a pain management specialist? I am not a medical profesional however I do know that doctors sometimes are reluctant to getting too heavily into prescibing drugs to manage pain for fear of addiction. A pain management doctor may be able to treat you with alternative methods such as a nerve block to help you be comfortable.
I am sorry to hear that Kimberly still has struggles in her recovery. I am sure it is very difficult to deal with all that you have, day in and day out. When you consider the alternative of not having the surgery, I hope it gives you some solace that you made the right choice, it is just that the path is a little more cumbersome than you had envisioned.
Hang in there, and know your family is in our prayers for Kimberly to improve. It will come a little bit each week, and hopefully this chapter will be begind you soon.
I was really crushed to read your last entry. I was "nicked" in one of my previous surgeries and it caused some major problems. Living in pain is certainly not fun but I agree with Diana, it's going to get better. Not having the surgery was certainly not an option so you can't blame yourself, David. I am sure you will get to the place you envisioned, it might just take a little longer.
How sad that you both are under such stress and discomfort from the mishap in Kimberly's surgery. Would that it could be remedied by another surgery but if there are risks in making it worse, no wonder she would be hesitant. Life saving is one thing but now, what a choice.
Keeping you both in my prayers and hoping something soon turns up.
Dear Kimberly and David,
I'm sure the complications are very disheartening. But, I promise it will get better, just may take more time then originally thought. I'm still experiencing pain, and altho I had come off the pain meds a few days ago, had to go back on them because the pain creeped back in. I'm 5 weeks post op, same as Kimberly. I have an annoying hack of a cough that just won't let up. Had it since surgery, and I do still get winded when I exert. Altho, its not as bad as before surgery. I agree with Fran, sounds like the surgery was a success, unfortunately, you have had some unforeseen setbacks. But, it WILL get better. I think of Kimberly all the time, and she, as well as your family, are in my thoughts and prayers. Hang in there! It can only get better, and it will. Just will take a little more time.
Dear Kimberly and David
Had been praying the news would be an improvement and I know it must not have been easy to write when there has been no improvement. Having unrelenting pain is unimaginable, my heart aches for you. You said earlier that there was depression. Have anti depressants been prescribed? Wonder if that option would help somewhat? As Mary Ann said, it seems the valve surgery itself was successful and not having it done was not really an option. Our surgeons do not do this kind of surgery if it wasn't necessary. Some large communities also have pain clinics where people like yourself can be evaluated and treated. I know several people who were helped this way, please consider this option.
I hope you do take happiness in the love for each other and for you beautiful children. Your wedding photo is beautiful. I do hope you have that where you see it every day. Every one in the photo is the reason to get through this so difficult time. My prayer is that your complete healing comes sooner and that your spirits lift and you find some joy in life again. You certainly deserve it.
Dear Kimberly and David,
My heart goes out to you both as you try to get through this major complication involving the phrenic nerve.
As to the pain, I was still having severe pain at four weeks. Minimally invasive I found out did not equal minimally painful.
I doubted my choice of the robotic method vs the traditional sternotomy. I still don't have an answer.Both have their drawbacks.
I understand that you might feel guilty encouraging her and being optimistic, but that is certainly normal. As to wishing she had not had the surgery, there really wasn't an option. She could not go on the was she was.
It sounds like her repair was successful so there is still genuine hope that she will recover and lead the life she expected. It will just take longer.
I wish I had words of advice but can only recall things that helped me. I gave up trying to hold off with pain meds and just took them as often as possible. Now at six weeks, I am down to one or two pain meds a day, and they are just tylenol or advil. At four weeks post op I would not have thought this possible as I was in so much pain, day and night. I also used cold packs on my chest a great deal. I used the polar packs that are colder than most. They did help.
and then there were the special visits: two of my sisters and another close friend (all living at some distance) came and stayed with me for three days at a time. It was such a boost having someone there just for me. It also took a lot of pressure off my husband who felt obligated to be at my beck and call. It was a win win for all of us.
I do not know of anyone experiencing this hemi paralysis so have no idea how that plays out. I just hope and pray it will repair itself in less than twelve months.
You are in my thoughts and prayers,
Mary Ann from Sioux Falls SD
You have been on my mind a lot, and wanted to check in and see how your doing. Sure hope that your beginning to get over the complications you have been experiencing. You continue to be in my thoughts and prayers.
Good Morning Kimberly and David
Just checking in to see how things are going. You are in my daily prayers and my prayer is that you have total healing and peace of mind. Hang in there, you are one strong lady, I gathered that by reading all your pre-op entries.
Good Morning Kimberly
Just checking in as I have been thinking and praying for you. Imagine the lasix is working in taking away the excess fluid. I may have mentioned this once before, but when I was having complications in my recovery, I would judge my day to day progress (or lack of it) and it was easy to be discouraged. My hubby, Pete, suggested we start judging by the week instead of the day. Then I began to see that I really was making some progress.You have to believe that this will pass and you will smile, be pain free and enjoy life again. God is good, as they say, if He brought you to it, He will bring you through it. My prayers continue for you (and David).
Hi Kimberely and David:
We have something in common. I'm David and I had my aortic valve and ascending aorta replaced June 3. Other than that, we're a few miles apart. You're in the SE and I'm in the NE; you're young and me - not so much; you're the opposite gender and you have a loving partner to guide you through this ordeal.
As you know, it's an ordeal for all of us. My recovery has been interrupted with lots of nausea and that nasty D word, but I'm on my way to better health and it's due to friends, family and loved ones. Lean on them - they like it.
I hope your next days bring you sunshine and happiness.
Dave Birchenough, Nelson, NH
You hang in there girl. A lot of ups and downs, but I'm sure things will calm down for you and you'll start to feel good as new.
I have a good amount of discomfort yet. And to top things off, my MS is acting up a bit, too. Which isn't abnormal because any kind of stress or trama can set it off. Right now, my trigeminal neuralgia is giving me a run for my money. I have a lot of discomfort along the top of my chest and my left breast is extremely sore. The incision looks to be healing nicely. I still have about 1" of so of glue on it yet. I have a cough that only happens at night, very annoying. I have good days and bad, Kimberly, and I'm hoping that things start on the upswing and I start to feel a lot better. We are only a day apart from our surgeries, so if I can be of any help to you, do not hesitate to talk to me. We are all here for you. Keep the faith.
Dear Kimberly and David,
So sorry to read of your complications. Like you I had the minimally invasive procedure hoping to avoid many of the problems of a cracked sternum. Like you, I have had many complications. I had a relentless cough ( which I was told somewhere along the line was due to a diaphram nick. some people, I was told get a severe case of hiccups rather than the hacky cough. Anyway, I coughed so hard I popped a stitch resulting in the ripping open of the large port entry and subsequent herniation of a lung. I went back to surgery 12 days after the original surgery to repair my chest wall. In was unprepared for the intensity of the pain following that procedure and am just now (at six weeks from the original heart surgery) starting to feel better. My right lower breast is still numb. The area across the top of the breast is still very tender as is the right side of my chest. I have shooting star pains run through my chest which I understand is nerves trying to reconnect. I still am very sensitive to what I can wear. I have just started wearing a bra for a few hours a day. I also had a wound infection along the way. It has been a hard row but I can now honestly say I am feeling better. The pain is way less.
I too have worried about depression which I think is hard to avoid when so much pain is involved. Now that it has let up, my spirits have improved a great deal. I can smile again. It has been a slow process but at six weeks I finally feel I have turned the corner and pray that things get better for you. It sounds like you have a good support system and that means the world during the difficult recovery period.
Wishng you well,
Mary Ann Marko from Sioux Falls, SD
I was so sorry to read about Kimberly's complications. I know it's frustrating but please try to focus on the positive . . . you are getting better.
Complications are par for the course (unfortunately). As you know, I've been doing very well since my surgery 5 weeks ago and then, just Monday night, I started to experience terrible pain on my left side . . . especially when I breathed in. I figured it was fluid on my lung and got into see my internist first thing yesterday. She said my lungs were clear but worried about an embolism so off I went for a CT scan. I was scared to death. Luckily, no embolism but I'm still in pain (less pain because she gave me better pain meds). But it was a reminder that this is a bumpy road for us all.
I, too, am experiencing pain across my chest from the cut nerves. I can only wear low-cut, very soft cotton t-shirts and finding a comfortable sleeping position (those darn breasts!) is getting harder and harder. And forget the shoulder-strap on the seat belt. (I either have to hold it away from my body or break the law and not wear it at all . . .) I wish I knew of a remedy for this pain that I could share with you.
Please do something about your depression. 70% of cardiac patients get depressed so you have lots of company. The problem is that it can affect the rest of your recovery so talk to your doctor (or the nurses in your doctor's office) about a referral to a counselor who works with cardiac patients.
You are lucky you have each other and you are both in my thoughts. I hope your next report tells us you're starting to feel better.
Happy belated birthday. I think that all of the good birthdays are in June--mine was this past Sunday. It's not fun feeling so bad on your birthday but at least you made it to see another birthday and there will be more birthdays to come.
I just read David's update, & was so sorry to hear Kim is having so many problems. I thought about the depression, because my Dad suffered from it after his heart surgery. Just try to hold on, knowing that everything will pass, & that you are surrounded by love as you heal.
Love you, Cheryl
Good morning, Kimberly, and Happy Birthday! I have been reading your journal updates, and I can totally sympathize with your frustration. I am 2 weeks post op TODAY, and while I haven't suffered the complications you have, I have been in pain; It is easy to see why one can fall into a depression, but please please try to discipline your mind to not let it in the door!! In your picture, you look so young and beautiful, and reading David's posts gave me the chills! You have MANY good days ahead..I am certain of that!! So keep your focus off the bad stuff and look at the sunshine down the road!! Shannon
Happy Birthday to from your heart sister in Cali. I have read about your complications and can feel your frustration. I know it's hard but keep envisioning a positive outcome and your body healing. This will all pass and will soon be a distant, albeit, unpleasant memory. You will get better!! You can do this!! I am saying healing and restorative prayers for you and David.
Keep us posted. Lots of people are rooting for you.
Happy Birthday! I am so sorry you are having all those complications, but please remember we are here for you. I know what's it's like to battle the depression. Since my second surger (emergency for fluid in the sac around the heart) I have had many "bad" days. It's hard, but I found that if you just let people know, they can help you. I just have to remember to look into the eyes of my children and husband and remember who all this is for. God only gives you what you can handle and as long as you let Him help you, you will get through this. Cry when you need to, laugh as much as possible and always look up! I am here for you if you ever need to talk! My personal email is firstname.lastname@example.org if you want to talk a little more privately! I am praying for you every day, take care.
Hang in there, I know it's hard on you as well, just be there for her and know that she loves you and is greatful for all you are doing for her!
Hi Kimberly and David
Was about to write tomorrow as you have journaled for awhile and now I know why. Why do these things happen? Does it seem irresponsible that the hospital noted the condition on the record but never notified you? I will pray many times a day that this condition resolves itself quickly and does not take months. God does answer prayers. Hope you get to go outside a few times a day and sit in the sunshine and listen to the birds sing, all uplifting things. It will get better Kimberly. You two are quite a team and blessed to have eachother.
Although I have never met you, the pedestal that David has placed you on can only mean that you are truly a wonderful person. David is a dependable, kind-hearted man who deserves an opportunity to live his life with such a beautiful woman. I am estatic that your surgery went well and truly humbled that I was invited to witness such a personal event. You truly are a fighter, stay strong. From my angle, it seems that GOD may have placed David in your life at the precise moment that you would need him the most. Continue to lean on David as I know few men of his strength and character. My family and I will continue to pray for you during your recovery. God Bless you and your family.
I am glad to hear the lump was nothing too serious. It will get better. I hope you continue to heal get better. I have been thinking about you and praying for you and your family! Hope to hear from you soon.
Hi Kimberly and David,
Tom and I have been following your journey. You have been such an ispiration to us. I am so glad that you are doing well. Tom was first day post -op yesterday. We were visited by many medical professionals yesterday describing the process of recovery. I guess that is the ticket..It is a process.
I just wanted to thank you both for all your journal updates and your kind word of encourgament.
Kudos to you both
Much love and admiration... Barb Schrage
Yes, I have a hematoma at the top of my incision. The doctor explained to me that it will go away in time. And it was very painful, but the pain seems to be easing up now. And the swelling has gone down considerably. One of my chest tube holes have not healed up yet, too. Had my family doctor check it yesterday when I saw him for a checkup and he said since there is no oozing or anything else coming from it, that too will take a little time and will eventually heal. I just have to keep an eye on it to make sure it doesn't get red, swollen or start oozing.
Your doing great Kimberly.