Thank you so much for letting me know you are doing well. So glad you are home and doing better. I did not have to take lasix, and am glad you are off it now. Pamper yourself and take it slow. I hope you have a continued smooth recovery.
Hope all went well today. As I write you should be on the other side, and starting the road to recovery. God speed to you! Hope your recovery is fast and on the smooth sailing side. Continued prayers to my fellow NJ and Howell resident. Update when you or someone can.
Gina, I was told to call the surgeon if I came down with a cold within 2-3 days prior to surgery. I didn't, so I don't know exactly what they would do, but I imagine it might postpone things for a few days, may have some effect on breathing tube??? You are wise to avoid being around too many people regardless. I did the same.
Linda Dixon, AVR 3/13/12
Best wishes to you next week!
I had a mini-sternotomy; as I said I didn't make the decision, I left it up to Dr. Adams. My incision is fine - truly is mini- can't even see the top of it when I wear a v-neck or scoop neck t shirt. I imagine it is only 3-4 inches.. how they did the surgery with the relatively small incision.. I'll never know.. just glad they were able to do it!!
Regarding Mt. Sinai; I didn't have the best experience as I had a lot of pain that was difficult to get under control. My husband didn't stay with me; although I heard on the last day that he could have if he really wanted to... He stayed at the Courtyard Marriott for 3 days; then drove back and forth the last 3 days. It was hard on him.. he hated the drive.. driving into NYC is a whole other ballgame.. My son's grandparents stayed at our home during the week to take care of him.. thankf ully that worked out very well, although I do think they were all pooped by the end of the week! As far as the hospital goes; I survived on my music (listened to piano music on CDs on a little player over and over).. it blocked out the hospital noise and helped to relax me. All in all I think you just have to "gut it out", as my husband says, for a few days... it is a hard week but just keep in mind each day you are closer to getting home. I left my son a little note each day to open up, and a little gift (eg slinky, card game, etc..). I don't know if it helped him.. but it helped me to know I had something for him to open up from me every a.m...
It is good your little ones are younger.. they won't ask too many questions and will just hug you to pieces when you get home! :) I wish you the very best; will look forward to following your journal. Dr. Adams is great - he will do a great job!
All my best, Kate R
Nice to hear from you again. I will be praying for you. I had my surgery on Tuesday and was released on Sunday. I was supposed to go home Saturday, but the fast heart rate kept me in an extra day. The incision was under my right breast 5-6 inches. I did not measure it, but it extended about the length of the entire breast area. Like I stated before, it never caused me pain at all. Just be sure to follow their instructions to keep it clean. You are in great hands and have chosen the best. You will do fine. Who is your cardiologist locally? If you need anything else....contact me.
I noticed you asked about a support person. Since I was not in a private room, my husband could not stay. He stayed in a hotel. On the last night, he slept in a pull out chair in a visitors lounge because he had checked out of the hotel. This was because we thought I was getting out, but I had to stay one more night because of a fast heart rate.
Hope this helps,
I will try your email again, but thought I would leave a note here in case it does not go through. When is your surgery? I did not notice a date on here. I did not have any ribs broken....from what I understand they go through the ribs with the side approach. I absolutely had a great recovery and was happy with my decision for the side approach. I did not feel any pain at the incision site under the breast. My discomfort was in my thigh because of their approach through the groin for the heart and lung machine. I had a burning sensation on my right thigh that did affect my walking in the initial days. It did eventually stop, but I was left with a pins and needle feeling that has significantly gone away. I have not read of anyone else complaining of this, and I would 100 percent choose this approach again. I honestly did not consider this surgery to be anywhere as bad as I imagined it would be. Mt. Sinai Hospital was a great experience. Everyone was supportive and kind. Please feel free to ask any other questions. Also,
I did not use most of what I brought...stayed in the two hospital gowns (front and back) until time to go home. Used my toiletries....could not concentrate to read.
I prob packed a bit too much. I did use my slippers daily. I brought 2 pj's and a robe. I used the pjs day before discharge and the robe. I brought a bra(still not using) and tankini(prob should have gotten a bigger size as felt restricting) and some sweats and flip flops to wear home. If you feel unsteady on your feet maybe sneaks, but I had wheelchair service to my car door. I did gain 20 lbs in fluid(I hear 10 is about average) so make sure your going home outfit is comfy. I also brought some tioletries, a couple of family pics and books and mags. Honestly I did not read too much as in between walking and visits I found myself most often napping. I did not have anyone by my side the entire time though others may tell you they felt comfort with that. The staff at Hartford Hospital had superior bedside manner, holding my hands, doing relaxing breathing and playing with my hair so for me that was enough. Had I not encountered those personalities I may have felt a lot different. Karen Campo
Greetings to another New Jerseyite. What hospital are you going to? I will be at NYPresbyterian for my surgery on June 12th. I still am not sure what to take with me but I'll probably take too much stuff. However, regarding your other question I would definitely recommend having someone with you to act as your advocate. You might want to give them a temporary Power of Attorney for HealthCare decisions; especially if that person is not an immediate family member. My best friend is staying with me the whole time and I did have a lawyer draw up a POA for her.
Joan Davenport AVR 6/12/12
I was preferred not to have somebody with me at night or even visiting during the day so much. The nurses & RTs were in & out so much and I had my cell phone by the 3rd day.
As for what to bring....have somebody bring your own (prepacked) toiletries items...especially, your moisturizer cream, lip balm, body & hand lotion. It's so dry in the hospital.
As for the back/shoulder pain, the murses at my hospital were willing to rub out the muscle and brind me a heat pack. Ask and they are more than willing to please.
I look forward to forward to follow your journey. Keep us inform and continue to ask your new HVJ friends (us) any questions on your mind. We're with you on this ride!
For the hospital stay- I agree that you don't need as much as you might think. I never used my PJs, robe, slippers. The 2 gown technique works better with all the tubes and wires, and the anti-slip socks are easier to leave on in bed, and probably safer too. I admire Steve's mom for her devotion but I am glad I had the nights to myself. I felt so tired and had a roaring headache for the first 3 days from anaesthesia that having visitors was more of an effort than a benefit. It probably depends on what kind of relationship you have with the person who might be staying. I used my ipod alot. I had downloaded some books on tape- turned out to be a lifesaver since the headache made reading unpleasant. Oh, and have someone read all that patient literature the first day you're in the stepdown unit. With my headache I didn't and I missed all the great patient education classes! That would have helped so much after I got home, I really regret not doing those classes. Nancy has some very good suggestions, especially about the earplugs- really valuable for ICU as it is incredibly noisy- wish I had thought of that!
We stayed with Steven (Dean) round the clock except for the first night in the initial ICU where we were booted out at about 9 pm. They had a one on one nurse that night so I was concerned (as a mom) but since he was still really groggy, I don't think he really knew we weren't there. Once he got in his room he was comforted by the fact that someone was with him. It is the little things he needed like water and ice. Help that first day feeding himself and just the general security you have when a loved one is with you. We took shifts so we were able to also get some rest as it is important for the caregivers to stay well and rested. I wish you the best and I hope this was helpful.
Steve's Mom, Linda
Hi Gina, I highly recommend a travel pillow to support your head and neck. It was a lifesaver for me. One of the common complaints of OHS patients is neck/shoulder discomfort following surgery. I also used Chap Stick quite a bit as your lips will be dry from the breathing tube. I never wore PJs or a robe, I just used 2 hospital gowns, one opening in front, one opening in back to take my walks. I really don't think I used anything else except my toiletries. As for someone staying with you, that would be nice if you have someone who can stay. I was at Cleveland Clinic, had wonderful nurses and caretakers, but it was nice to have someone to go get ice for me, etc. so that I didn't have to bug the nurses so much. Hope this helps some.
Linda Dixon, AVR 3/13/12
Hi Gina! My experience was that you really don't need very much. I did take a special neck pillow, some chap-stick, lotion and my ipod with earphones. I didn't use my robe, slippers or pjs, because of all the IV's and tubes you have on your body, they really aren't feasible. As for someone staying with you, every hospital is different, and the staff probably isn't going to be all that available when you need them, and it was nice to have someone there, especially at night to get your ice-chips, hold the puke basin, get a fresh washcloth, or re-arrange your pillows or blankets. I didn't need as much help during the day, because there were more staff around, but the night help was sure appreciated! Take an extra bag to put all the educational material you'll be getting in, it's pretty overwhelming! Thinking of you!
I'm not planning on having someone with me the entire time. I'm not one that like to have people around me when I'm not feeling well...so I'd say it's a personal preference.
The nursing staff should be there when you need them...at least that's what I expect. I work at a hospital so I'm not afraid to speak up when I need something.
I'm not bringing a whole lot with me to the hosp. From what I understand, they put your belongings in a plastic bag labeled
with your name and ask that you don't bring valuables. They don't want to loose your stuff when you go from OR, ICU then to a step down.
I'm brining toiletries (tooth brush, deodorant, wet wipes), lip balm, gum, tic tacs, PJ's, a sports bra that zips up the front. I'll have my husband bring my iPad and magazines if I feel up to it later on. some people suggest bringing ear plugs as the ICU is very noisy. I don't like wearing them, so I'm not bringing them.
I had a mini sternotomy; my decision was really based upon the surgeon's opinion- I felt it was up to him to tell me how he could do the best job. If he could see things more clearly by going through the front.. then so be it.
As far as having someone with you - I felt better having someone there with me as much as possible because the nurses and aides were frequently not available to help me. My husband was not allowed to stay over with me as I was in a double room with a roommate; however, if he could have stayed I would have loved to have had his company. You don't realize how you really can't even move your pillow or pull up a sheet those first few days.. at least in my experience, I was dependent upon others to help me with the simplest of things.
Best wishes to you; I look forward to following your journal.
Yes, for a thoracotomy, they do the heart/lung bypass through the groin. For a sternotomy, it's done through the chest.
I wouldn't use any of those reasons as deciding factors though. The surgical approach should be decided by the type of repair you need and your surgeons comfort level / experience.
I would have agreed to a sternotomy if that's what my surgeon suggested, but he was very confident he could do the repair via thoracotomy, so that's what we're going with.
I don't believe they ever break ribs with a thoracotomy....at least I haven't heard of anyone having a rib broken purposefully or accidentally.
The issue for women is the incision location....thoracotomy is right under your breast. It's easier if your small breasted. Sternotomy is between...less pulling post op if you're smaller.
I'm having a thoracotomy on Monday, 6/4, so I'll let you know.
I spoke with 3 surgeons and they all recommended a right thoracotomy for my mitral valve repair. Dr. Ryan in Plano, TX described that this option gives an ideal view of the valve. My surgeon, Dr. Gillinov stated that there was a small (<5%) likelihood that they would have to go through the sternum, but in the end he was able to do the R-T.
Now that the surgery is over, my greatest satisfaction with the R-T approach is that I was cleared to drive 7-days post-op. The CCF cardiologist stated that there is no concern with an airbag deployment with a R-T. Since I have a wife that works and a 3-yr old, being able to drive so soon has made me productive as of Day 10.
I agree with DVB that risk rules all. IMHO the surgeon is the #1 most important factor.
Hi Gina. I would focus on risk first, recovery aspects second. So when you have a discussion with your surgeon ask which gives the best view, the best workspace, has the less time on bypass, with which they have more experience. I would trade an extra week of discomfort for better survival odds any day. -- DVB
I am going with the right thoracotomy in a few weeks (I will give you my personal opinion then). From everything I have been told recovery is faster with thoracotomy versus sternotomy. As you will hear on here many times, everyone's recovery is different...so go with your gut after doing enough research that you feel comfortable, ask all the questions you want, and then make a decision and stick with it...being confident in the fact you made best decision at that point in time.
Also understand that your surgeon will make a final decision after they perform a TEE in the OR prior to surgery, so if you plan for the thoracotomy and for some reason the Dr. decides that isn't in your best interest at game time, you will get the sternotomy (or mini-sternotomy).
Like I said, I haven't been down that road yet, just relaying the information I have gained from this great community to date.
I was surprised to see someone from the same town. I had Mitral Valve Repair at Mt. Sinai with Dr. Adams on 3/2/10. I am doing great. I had the right Thor. Approach and did great through the surgery and recovery. Any questions I would be happy to help.
From what I've read, the thoractomy is more painful, but you won't have a scar down the center of your chest. I had a mini sternotomy, and I can tell you it wasn't painful at all. The chest tube drain was more painful than my sternum. My scar looks like a thin, white pencil line at 8 months out.
Good luck and God Bless,
Hi Gina, I think I accidentally deleted your message to me... I am so sorry. Please let me know how you make out with Dr. A. I do believe he is the best in the country for mitral disease. Hang in there... I know what you are going through :). Kate Rooney
I flew from Houston to Mt. Sinai for Dr. Stelzer who specializes in something called a Ross Procedure (aortic valve replacement). I'm not sure if he would be the guy at Mt. Sinai for you but I can tell you from personal experience that Mt. Sinai is fantastic. I would do it all again tomorrow. I'm so terribly sorry you're going through this but we will all be here to support you. Keep us posted!!
Eighteen month old twins and facing heart surgery...that's tough! Not so much the surgery...I'm sure you'll wiz through that, but the carrying issue and just the fact that babies love and need all the mommy time. It must be overwhelming on a good day.
As far as surgeons go...my first thought is Dr David Adams at Mt Sinai in New York. He's top notch. Many people from this site have used him and say he is not only an excellent surgeon but very personable. There is a ton of information on the web about him and mt Sinai on the web.
Best of luck in your search and with your adventure through heart repair. Please feel free to rely on us for support. Many of us are moms and may be able to help you deal with issues and emotions.
Welcome to the site and you are off to a great start coming hear.
It's hard to know what surgeon to go with and there are many choices (local or do I travel). Talk to as many as you need to you find the one that makes you feel comfortable. One that you feel is listening and is being candid and not just telling you what they think you want to hear.
Good luck and you will be amazed as to what you will get from this site. Let us know how we can help you with any questions you have.