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AngelaR

AngelaR

Well-known member
Joined
Mar 19, 2008
Messages
86
Location
Waldorf, MD
I have posted on the valve selection and pre surgery forum and as I navigate around this wonderful website I keep finding more and more information.

My husband, Ray who is 32, will be having his insufficient bicuspid aortic valve replaced with an On-X mechanical valve 1 May at VCU in Richmond, VA, by Dr. Derek Brinster.

Ray also wants to be considered for the low/no coumadin clinical trial study that is currently going on.

We start the Plavix and Aspirin load on Tuesday the 8th. And he goes in for the blood work to see if he is sensitive to this treatment on the 14th. We won't know until 3 months post op which group he will be in; the control or the PLAVIX/aspirin.

We have two little girls. Sydney who is 8 and Rachel who is 6. Sydney is taking this the hardest. She is very fearful of her dad having surgery. She is very attune to others and their feelings. My little bleeding heart =) I don't think Rachel fully grasps what is going to take place.

I was feeling very positive about this whole operation and the recovery. Staying positive. I figured I had done my reserach on valves and doctors now I just have to leave it up to fate as to how this all plays out. The last two days I am starting to get aggitated. I am still positive that he will be fine, but let's face it his recovery will be lengthy and everything is going to change.

I'm usually pretty good about change. I can roll with whatever I am dealt. Ray and I have had our fair share of hard times and have always been just fine because we our there for each other. We have good communication and really trust each other.

I've been trying to be the positive one telling Ray everything will be fine and this is just one more bump in the road that we will get through. I guess he is not handling this as well because I think he feels I am coming across nonchalant about it. Which of course isn't my intention. His sister is freaking out, our daughter is freaking out, I was just trying to be the solid foundation for everyone. I thought my calmness would calm them, instead he is thinking I don't care.

Just shows you how key communication is, especially in dire times.

So the last few days I have been feeling sorry for myself. Wondering why Ray's valve couldn't have hung in there another 10 years. I feel some how cheated. All these new obstacles that we are going to have to face and the new worries. Drugs, testing, scars, he's so young. I know stupid, right. Then I read Laura's post and I see all the heartache she has and I feel ashamed.

As everyone has already told us the waiting for the surgery is hard. Different emotions different days. I think of the worst like if something bad were to happen during the surgery and how our family will function without Ray. Or if it's not a success and he has a heart block or a stroke and just isn't well after the surgery. How we will survive with those difficulties.

I told myself right from the begining not to what if. And here I am doing that.

I'm just feeling stressed today. I try not to do that. No point in stressing what you can't control. I guess that will come and go.

It does help to talk to all of you that have gone through this or are waiting like us. So I am very appreciative of Hank for creating this website.

I hope you are all having a good day.
 
It's an emotional roller coaster ride, that's for sure....and it's normal. However, it sounds like you are for the most part "positive". Slipping into "negative" territory is human, but you sound like a strong person and I'm sure you'll deal with this fine. Valve replacement/repair is fairly routine as far a OHS goes. In fact, I was very surprised at just how routine as I watched the hospital staff in action at the hospital. Hang in there. Best wishes and good luck to both of you.
 
Everything you guys are feeling is normal. Emotions run high prior to surgery. I had several major pity parties over my surgery prior to it. The bottom line is Ray was dealt some lemons so its time to make lemon-aide. Like you said, you can't control what you can't control. OHS is scary but look at the statistics, less than 2% mortality rate for valve replacement. And who do you think make up the lions share of those 2% ? The 31 yr old patients who are in shape otherwise ? Doubt it, probably folks that are older with other health issues besides the bum valve. With any surgery there is risk, that is why its so important to find a surgeon you have faith in, more importantly that Ray has faith in.

Up until a few days before my procedure I was a basket case but when I actually got to the hospital a calmness came over me because I knew I was doing what was necessary. When I was wheeled into the operating room they hadn't given me any sedatives yet and I was fine, I KNEW I was going to make it through the surgery. Ray will also. You can't predict the future all you can do is make the most educated decision possible and run with it. You guys have done that. You might not realize it right now but I bet when you get to the hospital you will both have a positive mindset.

You said that recovery will be lengthy and everything is going to change. Im 1 day shy of 5 weeks post-op, my procedure was on 2/29/08. Today I talked to my cardiologist and I was cleared to go back to work, no restrictions. I start back on Tuesday of next week. Im not completely healed, I can't do heavy lifting but Im pretty much pain free, not taking any pain killers for over a week now, walking on the treadmill daily and even working up a sweat. The only reason Im not trying to run at this point is because I haven't started Cardio rehab yet, thats in just under 2 weeks. But I bet Im running in 3 weeks tops, lifting weights again in another 7 weeks (12 weeks post-op). Other than having to take meds daily (not that big of a deal) nothing else in my life has changed other than Im probably taking things in much more than before, not taking things for granted. Oh yeah, Im 10 years older than Ray. I would expect his recovery to be comparable to mine if not faster.

Venting is good, helps you gain perspective. Just keep your chin up and tell Ray to email me or others on here any questions you may have. I'll be happy to give you my cell number if Ray wants to talk to someone who has been through it, I had a family friend who I spoke with and it did me a world of good.

Hang in there...your both gonna be great !
 
My husband was 51 when he had his bicuspid valve replaced. 2 months later we took our 34th Wedding anniversary trip. He drove over 450 miles we just stopped and made sure he got out and walked at each rest stop. He is 58 now and he fishes,works as a Maintenance Mechanic,built out pool fence and deck and cuts our firewood with a chainsaw. You will be amazed at how how quick your husband will be back to doing all the normal things. My husband has the ATS valve and takes coumadin everyday. He has never had any problems with excessive bleeding. The first year after his surgery he got hit in the mouth with a steel pipe and had stitches he did not bleed anymore than anyone else would have. I was a basket case before his surgery. I could not stand the thought of losing him. But he just had his cardio check up this week and everything is good.
 
Angela,

Sometimes I think it is harder being the family member than it is to be the patient. The waiting was probably harder on me than my family, although I didn't have a wife and kids when I had my surgery. But once I walked through the hospital doors on the morning of the surgery and got my "happy place" shot in pre-op, from that point on I was just along for the ride. I think my family had it tougher after that.

I kind of knew this but it really hit home this week. My mom had a mastectomy on Tuesday morning and I was worried sick about her. She is 76 and has asthma like symptoms and chronic coughing spells (which they finally figured out was from chronic sinusitis). I was concerned about how she would handle the anesthesia and how much pain she would be in after the surgery if/when she had a bad coughing spell. Well she did wonderful. The lymph nodes were tested and came back negative for cancer, the surgery went great, and she was home the next morning feeling great and in no pain. I'm sure she had fears and "what if's" going into the surgery, but it took its toll on me as well since I had the "what if's" too.

It just shows that when a loved one has surgery it is definitely a family affair.
 
Hi Angela, My husband doesn't have the heart problems, but my son has had a few surgeries, the worries aren't the same, but I understand the trying to stay calm and positive and how hard it is when the what ifs keep getting in your thoughts. This is a really good place to vent. It might not be any of my business and feel free to say so, but I was wonderring how/why you guys (I'm assuming it was a joint disicion) decided to get involved with the clinical trials? AS for the surgery, as everyone has said for first time surgeries the odds are incrediably good , so that's a good thing to focus on, as for complications, Justin's had a of different complications with some of his surgeries (he's had 5) but ended up fine, so even if Ray hits a bump, remeber to post here and usually you will find someone else that has dealt with that. It always helped me to know of others that went thru something similar and are doing fine.The weeks before the surgery are really stressfull, but try to rest up, because for the family member the first couple days post op can be rough, having a loved one in ICU, so please remeber to take care of yourself, rest eat ect. Will you be able to stay with Ray most of the time? that is one thing I really recomend if at all possible. Some Hospitals (not all) even have chairs that fold out or cots, so you might want to ask about that before the surgery. Good luck with everything Lyn Sorry if my spelling is off I just realized I'm getting tired
 
Welcome!

Welcome!

Of the two choices, which are emergent surgery without preparation and scheduled surgery with preparation, I'm still not sure which one wins in the stress department. Either way, you do what you have to do.We have two small children as well (ages 4 and 7), and even though it was an emergency, it was helpful to keep things as normal as possible. For instance, my mother-in-law (MIL) flew out to help take care of the kids. Even the day of surgery, the older one attended school. I did all the laundry the night before his transfer and matched up outfits in a pile so my MIL wouldn't have to hunt. I put easy-to-prepare items in a box (so what if they get mac-and-cheese a few more times than normal?) and put it in the kitchen. They did have to forgo a few extra-curricular activities, but with a few phone calls, people from church picked them all up and drove them to their Nativity play, so they got to do something they had been practicing for months. I left a list of phone numbers and the daily routine. Lest you all think I'm super-organized, well... I'm not, but doing these things helped keep me from hysterics. I knew that if I didn't arrange for animal care, my husband's recovery would be impeded by worry and would be affected by coming home to a pile of dead or sick chickens and other animals. I did have to go out and buy chicken feed, etc. Needless to say, I didn't get a lot of sleep, but I wouldn't have in any case.
We never did mince words with the kids. When they asked if Daddy would be OK, I had to say "I hope so". I encouraged them to pray for their dad, and it made them feel that they were doing something important( which they were). I knew that if something did happen and I had told them everything would be OK...well, they would never trust me again and my credibility would be shot. They got to speak with their dad as soon as he moved out of the ICU to the medical floor. I stayed with my husband in a cot on the cardiac unit and we managed very well.
The kids are having some problems with acting out, and they both want to have their daddy's attention even more than usual. As a matter of fact, they pester the daylights out of him, but this is to be expected.
Don't be ashamed of your fears. Ask your doctor for something if you can't sleep. I worry more if someone is very laissez-faire than a worry wart. Do make sure you have your wills updated and advanced directives, etc done. I think one needs to be reasonable, after all. I still cry (a lot) but try not to do it in front of the kids. I DO let my husband see it, however, because he needs to see it, if you know what I mean. I also spoke to my sister for about 50 miles of the trip to Boise from here, and cried the whole time. Her calm voice actually steadied me quite a bit, so even though it is not usually my style, I did lean on her for support. I'll probably need some counseling over this whole thing, but maybe between the support group and his continued recovery, I can make it without.
We'll be praying for you both.
Take care of yourselves in the meanwhile.

Spring-like in Idaho,
Laura
 
Good Morning, Everyone,

Scott, Wayne and Terry thank you for your kind words. And Scott I will let Ray know he can talk to someone who has been through this. I don't think he is ready at this point. Probably post surgery.

Oaktree - thank you for that link. We aren't fighting and we aren't not getting along, we are just having a hard time finding the right words. We both know that the other isn't going anywhere. Believe it or not, we've been through more emotional situations than preparing for OHS. It's just that we are so used to talking about things and when you have a hard time finding words plus our schedules have been busy lately too so we haven't seen a lot of each other. Phone calls just aren't the same as real time.

Lyn, I could imagine that it being your son would be worse than your spouse. Your strength is awesome. I couldn't imagine if one of the girls was going through this. We had a luekemia (sp?) scare when Rachel was 2. Quite possibly THE worst few days of our lives. I wish you and your son nothing but the best. =) It was Ray's decision to participate in the clinical trial study. Mostly because of his profession.

Bryan, I am glad to hear your mom did so well after her surgery. It is scary to realize our parents aren't invincible. It's funny because I only see my dad a few times a year. Everytime I see him I am kind of shocked at how grey he is or how much older he looks. In my mind he is that same 36 year old dad. Tall, muscular, great dark curly hair and stylish goatee with a killer smile. Now the goatee and hair is all grey and he appears to have shrunk a bit. Of course my 5'10" 185lb. dad next to my 6'1" 250lbs husband is quite the stark contrast ;-)

Laura, I am glad we have the time to prepare. That does make some things easier. Sometimes worrying about all that stuff is stressful too, though. I hope you continue to have a speedy recovery and everything is "OK" =)

Well last night Ray was supposed to have his physcial fitness assessment for SWAT and they wouldn't let him take it. So he was very upset and threatening not to have this surgery done until later. I think he was just saying that in the heat of the moment. Again this was a phone conversation and I felt bad because I couldn't talk to him long and he was extremely upset. It didn't make much sense. He couldn't take the fitness test but he was allowed to train and participate in all the drills. I guess this will be the first of the many stupid games we will go through with this.

The girls God Mom aka Suebee (Susan, Sydney got Susie confused when she was little and it just stuck) is going to come and get the girls the night before Ray's surgery and keep them for a few days. After talking to a few folks and hearing about the shocking condition that Ray will appear in after the surgery I thought it best they don't see him for a few days. He will be in and out anyways, I will have her bring them back down on Saturday or Sunday when he is more lucid and can appreciate that they are there. I thought they should be involved in this whole process but now I am starting to see the impact that this is having on Sydney. She is very worried about mortality now and she doesn't need to be stressing about the what-if's. I think she knows enough right now, maybe even too much.

Well today is a new day. I was feeling better last night until Ray called. Then I got frustrated again. More unknown's. But I guess life is basically unknown, it's just more of a reality when you face something like this.

I do know one thing, we will be OK. Happiness is ultimately a choice and something we can control. Making the best of any circumstance. I just need to get some coffee and I'll be happy =)
 
Oh no, Oaktree, I wasn't taking it defensively =) I appreciated it. I just was clarifying =)
 
As others have said, waiting is the hardest part. I'm going to have to agree with Bryan B in that it's more challenging for family members than it is for the actual patient. I thought recovering from OHS was actually a piece of cake...though I know that there are complications and anything can happen, but the surgery is pretty routine nowadays. Once your husband gets through the first week, it's pretty much rest, take your pain meds as necessary, walk, eat and sleep. It's really no more than that. And by the way, I'm 33 years of age (nearly 8 weeks post op), so very close to your husbands age. Recovery at our age is alot quicker and better than when you're in your 60's and up. I think what you are feeling is normal, but I would encourage you to look on the bright side of the numbers. Your husband is at very low risk of anything major happening to him during surgery. Is it possible...sure...but again, not likely. I'm a 'glass half full' kinda guy and truly believe that the attitude that you and your husband take into surgery will help/hinder the outcome and speediness of recovery. Stay positive and believe that everything will be just fine! And I'm sure it will.

Take care and keep us posted.
 
Angela, Thank you, sometimes I don't feel very strong, but you know you do what you need to. Justin has had both planned and emergency heart surgeries and I can agree they both are stressfull in completely different ways. I didn't say anything, but I'm glad you decided not to take the little girls to the hospital the first couple days, it can be tough for an adult seeing someone they love right after surgery,and it is kind of stressful. IF you want I have some pics of Justin after his last surgery, feel free to email me, just put VR.com in the subject. I think that is good he is willing to be in the trial, I don't know if I could be brave enough to be in that one, I understand the Police, my Dad is a retired Pa State Trooper, IF I can help with anything from the family side just pm or email me, I don't check here as often anymore. I would be sure to echo take a sweatshirt or something for you, they keep those CCUs freezing. and take lots of dollars/quarters for vending machines. Lyn
ps I really recomend setting up a web page, it makes it so much nicer to update then having to remeber calling everyone or them calling just when you family mmember falls asleep. my sig goes to one of the free sites for medical updates.
 
Good Morning.

Ray started his PLAVIX and aspirin load yesterday. He had to take 4 pills yesterday and they really upset his stomach. Hoping that it was only because he had to take 4 and that it evens itself out. He said he felt like someone was wringing his gut and it just felt heavy.

We go Monday for the bloodwork.

Everything seems to be going pretty good. No new events. Just waiting.
 
We went for our pre-op stuff yesterday. Also did the blood work for the FDA study.

They did an EKG, Chest X-Ray, lots of paperwork, blood work and a lot of waiting.

They went over everything I can expect on the day of the surgery. The waiting room and getting me and Ray's sister, Tracy, a room at the hospitality house for the night Ray is in ICU.

My dad is coming down the night before the surgery and he is going to stay with our girls until Saturday. So this works out good, I won't have to take our dog somewhere with him coming down so that is one less thing to worry about.

So we are still waiting......about 2 weeks out now.
 
To AngelaR...Your husband, Ray, should do very well. He is young and that should help him recover quickly. I am a BIG believer in getting heart related issues corrected before problems crop up. I had mine done before I had experienced any serious symptons and I believe that is one of the reasons that I have done very well over the years. I can't speak about modern surgery except to say that doctors have been doing it a long, long time and their results show how successfully people are returned to normal, productive life.

It is normal to be concerned. You are fortunate to have found this Forum. You and Ray can get most of your questions answered by folks who have "been there, done that". :D :D
 
Good Morning,

I am sitting in the waiting room. We had to be here at 0530 and they wheeled him away from us at 0830. They started the surgery at 1005 and we are now just waiting. None of us got much sleep last night so we are tired.

Ray did very good in the pre-op room. He really didn't get upset until about 8, and they gave him some medicine shortly afterwards.

It is very surreal for the day to finally be here and just sitting here waiting. I am very thankful to be getting this over with.

Luckily, my brother-in-law has wireless and a laptop so I am cruising the internet. You were all right (spouses and significant others) that your attention span is gone. Yesterday at work was difficult. Just antsy.

I'll keep you all posted. And thank you again for walking us through this!
 
Angela thanks for posting.
As the day goes on, my prayers and best wishes will be going out to you and Ray.
Don't forget to look after yourself.
 
Thanks for the update. I was also the spouse in the waiting room. Its rough but you will get through it. Just remember to eat and get some rest yourself.
 
I hope that you are (were)not by yourself in the waiting room. I was prepared to wait there by myself since it was emergent and far away from home, but St Luke's in Boise has wonderful staff and volunteers. The pastor stayed with me for awhile, then the volunteer regaled me with tales of Minnesota (sort of like an elderly Garrison Keillor). I ran into several people from neighboring towns who knew people that I knew. A nurse that I had known at home was on staff at St. Luke's and made a special effort to spend time with me in the waiting room. A friend had her aunt (who was up there with her hubby at the VA clinic) stop by to check on me. I received updates regularly-when my husband was on bypass, when he was off, etc. The time actually passed fairly quickly, even though it was 3&1/2 hours in the OR and another 30 minutes or so to get him arranged in the ICU. These people seemed to be sent by God to help me keep vigil. When the surgeon came out to speak with me, he was very gentle and soft-spoken. We did not have a choice of surgeons due to the emergent nature of Chris' surgery, but I would chose him again. And (to this day I'm not sure why), the surgeon hugged me in the waiting room, and told me that Chris' heart started as soon as he had been warmed up and taken off bypass, no electricity needed. He also told me that Chris' heart was in excellent shape except for the mitral valve, which was now repaired and had gradient down to 4! He told me that he felt my husband would do very well, and...he was right. I felt that I could trust him. It was hard not to place him on a pedestal, as a matter of fact. My husband felt the same. We even told him, before discharge, that he was indeed a "healer". He seemed surprised and gratified. We never got to see him again after discharge, as my husband's care was turned back over to the local cardiologist.

If I had any advice for anyone who is going to be in that waiting room...it's to bring someone with to stay with you, even if it's only to sit there with you. Don't be afraid to reach out; no one will think you're out of line.

Peaches and Nectarines Blooming in Idaho,
-Laura
 
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