Met with Dr. Ryan today and we are set for 10/23! So happy we could stick with original plans! He was super great, very patient, explained things well even though his morning had ended up very packed.
Penny was wonderful and really put us at ease while preparing the initial assessment. And when we went out to schedule, Tammy already had put me in the books! After talking with him, I are going with biological valve after all. That was my initial plan but then I thought my age might make that a problem with another potential surgery. But I went in with an open mind and hoping he would have a clear recommendation one way or the other based on my history and his experience. Basically his thought is that the overall lifetime risks for me are lower with the biological valve - even if a future surgery necessary. Honestly I think these surgery protocols are going to continue to improve radically because we are aging as a population and more will be needed. So I feel comfortable with this plan.
My cardiac cath is on the 22nd and that will show if any bypass work needed. May need a little work on the aorta as it appears a bit dilated but they won't know until they get in there.
Once again I was called a "young woman" which tickles me to no end!
Thank you everyone for your prayers and good advice about the date and the wait! It helps more than you can imagine!
My appointment is at 9:30 tomorrow to meet Dr. Ryan and find out when my surgery will take place. Still hoping for the 23rd or 24th, but I will just be happy with a date we can count on. I know even that can change as many of you have shared - but will at least be more definite than right now! Haha. Really looking forward to meeting him as I hear such great things. Also Tammy in his office has been so nice and look forward to putting a face to her voice. God bless all those facing surgery tomorrow and praying for your successful passage to a full recovery.
Today was my husband's birthday and he spent a good part of it picking up my cd from the cardiologist in one town and driving it to the surgeon's office in another? What a sweetheart I married nearly 37 years ago! Hope I get good news on Thursday that we can stay on the original schedule. Whatever happens will be for the best. Hugs and prayers to all those having surgery tomorrow!
This morning I woke up and walking to the restroom and back made my heart race. A bit later I was talking silly to the bird and all at once felt really short of breath and my head felt weird. Felt crummy all day. That was a little disconcerting. My throat still hurts from the neck surgery and I see the orthopedic surgeon tomorrow for final followup. Maybe he can tell me why this is still so sore. Curt's birthday tomorrow and should see Ev and Raelyn. Looking forward to that. So grateful he is so healthy at 67!
Although my cardiologist spoke to Dr. Ryan about my case, somehow no one reached out to Dr. Ryan's office to ask them to get me actually scheduled for surgery after the cath. They sent them my FMLA paperwork but none of the cd's of my workup. Now the timing is up in the air. I had asked and asked if I should reach out to them myself and was told they would handle. I should have followed my gut and called them but I was trying hard to not be a pest.
Note to all medical teams: your patients are scared to death and the last thing we want to do is aggravate someone who quite literally is going to have our life in their hands! Please have a clear process lined out of who will do what and send that to us along with all the legal paperwork. It will ease our minds if we can check off the steps as the process moves along and spot a hole if one develops! You are busy with tons of people so something is bound to skip your notice. But we are laser focused on ourselves and can actually help!
I am so grateful that Tammy in Dr. Ryan's office called me yesterday when the FMLA paperwork showed up by itself. She quickly scheduled time for me to meet with Dr. Ryan next Thursday. I am still hoping we pull this off on the 23rd or 24th but am fearful someone as busy as him may already be booked that far in advance by now.
My office has gone to so much trouble to get people lined out to replace me while I am away and it would be awful if that had to be rearranged or worse if they were left without help. My FMLA has been filed and that would have to be adjusted. All the work and personal details folks have to work through for this kind of thing have been rolling along. I was just sick by the time I got home. My brain has been counting the days and getting mentally ready and now I feel like I am in limbo again.
God has been so amazing to help me find this issue before It got worse. I live so close to great medical care, have great insurance. I have had precious support from work, church, friends, family, and the folks I have never met on this journal. So surely whatever comes of this snafu in timing will be for the best. Pray that we can keep to the schedule if that is best, and that everything else will get worked out if we have to adjust. I am a planner and not a "whatever happens" kind of person so this kind of thing really makes me stressed.
Crazy busy at work trying to get things nailed down for while I am away. We are such a small Team and I just hate that I'm leaving them in a bind. But as one sweet lady reminded me: "Time flies! It won't be long and you will be back!" That is so true. I haven't thought of the swift passage of time as a blessing since as an older person I don't really want it to fly so fast! :-) But with this kind of thing, time passing fast is a nice thing!
I'm losing weight, which has also been a nice side effect. Not trying to - guess my body is just spending a lot of energy keeping up the blood flow! I'll have to be careful that I don't get in the habit of overeating now and then when I'm better packing these pounds back on! LOL! I was following Weight Watchers before all this, so one goal will be to get back on track again after surgery and use my new-found energy to also get back to some form of exercise. I can't even imagine that right now! Never thought I would think that might be fun - but I'm actually looking forward to it! Must be the lack of oxygen right now!! LOL! Have a good evening and to all those facing surgery tomorrow: God Bless and keep you safe and we look forward to hearing your wonderful stories of successful surgery and recovery!
Today my Team at work surprised me with the sweetest gift basket! Totally surprised me! I really love Halloween and our company always makes it a big fun day. Hated to miss out on preparing for the fun. The basket has all kinds of fun decorations and it will be so fun to put them up around the living room. The card was my fav silly vampire couple - Bella and Edward. There is a cute little Mummy that sings Thriller. I may have to take that to the hospital with me just for laughs when I need one! Made me cry in a happy way! I am very very blessed.
Today is our son's birthday and the 8th is my husband's. It is so great to have the surgery after both of their special days. Even though we didn't get to see him today, we texted and spoke yesterday. Thank goodness for today's technology to keep in touch. My husband and friends are going to update these posts when I get into surgery. How cool to be able to let friends and family know my progress right away! Love it! Prayers and hugs to all those going to surgery tomorrow! As another person always says - "keep on ticking" (or clicking with the mechanical valve!)
Although I try not to dwell too much on the What Ifs, filling out all the paperwork, Advanced Directives, FMLA, writing out all the things my hubby will need if I cannot function, etc., makes it hard not to be afraid of what might happen. Frankly, I don't want to die just yet, or be terribly incapacitated. And that is one big ole elephant in the room!
I am not afraid of what happens after death. I have a lot of security in that area. But I just don't want to die. I want to get old with my sweet husband. I want to see my son and his lovely lady grow and who knows - maybe have a grandchild someday. (Kids if you read this, I love the puppy too - but you can't fault me for my wishful thinking! :-). )
I love my job, but I want more than to work and drop dead at my desk. I want to be able to retire sometime and spend more time with sweet friends and the few sane family members scattered around. I want to travel a little and paint all those pictures I have been dreaming about. And finish all the scrapbooks.
I am sure looking forward to looking back on this post and being very grateful to be alive. That has to be one of the greatest feelings in the world!
Some years ago friends of ours told us they were getting their son his first dog. We thought that was great until we heard they were planning on a Great Dane. Without thinking we started relaying all the horror stories we had ever heard about having a Great Dane. On our way home later, it struck us how awful we had been to rain on their parade about a dog choice! They needed our excitement and happiness for their adventure and we just dumped on them! We immediately called to apologize and we all laughed at the strange tendency we humans have to deliver bad news as an odd way of relating to someone's situation.
For example, his wife shared that she cut her finger badly on a rake and needed a ride to the doctor to get a couple of stitches. Her husband was out of town and was going to be gone for a few more days. Her neighbor gladly gave her a lift and after getting her stitches and a tetanus shot, drove her home. As the neighbor was pulling into my friend's driveway, she told her a story about a distant cousin who had been through the exact same situation and had died in her sleep that night from a rare reaction to the tetanus vaccine. Then she ended her story with "But I am sure you will do fine!" Needless to say, my friend was awake all night, worried about that ridiculous "Big Dog Story"!
Since then, whenever anyone tells this kind of story to me or my husband while we are going through some sort of life experience, we relay it to each other and end with "But I am sure we will do fine!" and laugh them off.
It has been a hoot to hear some of the Big Dog Stories folks have shared with me about Cousin Ernie's heart valve surgery where the doctor supposedly put it in backwards, or Great Uncle So and So who had a biological valve that just lasted two years, and on and on. The stories always end, "but I am sure you will do fine!"
People are just trying to relate to a situation that thankfully is one they haven't usually experienced personally. This is big scary stuff and brings up a lot of emotions for different people. I am just relaying this in the hopes that if someone relays scary stories to you that you can label them Big Dog Stories and not let them worry you needlessly. I am sure you will do fine! :-)
Heart cath set for Monday 10/22 and the surgery will be either next day (Tuesday) or Wednesday. Dr. Ryan will be my surgeon and I am very pleased about that. Relieved to have a date to march toward. After thinking about it more and asking more questions, getting great information from this community and other people, I have settled on the Mechanical instead. I am not crazy about the Coumadin but in weighing out the options I think I just prefer shooting for getting this done once. There are no guarantees with this sort of thing so just have to make the best decision we can with what we understand at this time. There are lots of successful mechanical hearts out there to confirm that it works well so I feel this is going to be fine for me.
No call from Dr. Santos' office yet. I know they are terribly busy so trying to be patient. Nerve wracking though. Trying to coordinate the cath and surgery between two different offices has to be a challenge. Praying things will pick up speed tomorrow. Thoughts and prayers to all those going through surgery today!
Well, I thought I was settled on which valve. Sure wish a note would float down from above and tell me which one to go for.. But doesn't look like that will happen. Would like to hear from some folks who went mechanical. Was it difficult to get used to the Coumadin regimin? Do you self test? Have you run into any special concerns?
While going through all this myself, I realize it is also hard for those around me. I have withdrawn a bit as I think this all through. I try to keep a happy face on, but sometimes I am so scared I won't make it through. I worry about my family and the folks at work while I go through this and recover. I am very blessed to have good insurance and a good job. My family loves me and supports me every step.
No date set and maybe good while I wrestle with the valve question a little more. Prayers to all having surgery this week!
This is so silly but I found out I need to have a cardiac cath, which totally makes sense, but it scares me silly. I spent some time last night reading some information and that helped a little. I am slowly focusing on reading just within the heart valve community. There is good info on several sites, but after awhile it becomes overwhelming. And it doesn't t take long to come up with a lot of frightening stories and scenarios. I don't want to miss important info, but this operation is inevitable if I want a chance to be healthy so I don't see any point in scaring myself more than I already am.
Unless the surgeon has some strong objections/concerns, I am going to go with the animal valve. If I am fortunate to outlive it, then may go through this again. But I just know I would eventually have difficulty with a Coumadin regimen. The doctors keep referring to me as "young", which tickles me since I will be sixty soon. But given the "typical" age range they deal with I guess "young" is relative. Haha.
Plano Heart Hospital will be the location. Not sure yet about which surgeon. Hoping I can get in to Dr. Ryan. I thought I could do the cath and surgery in one visit, but after reading more that seems unlikely. So would hope to have cath around the 23rd of October and then the surgery as soon as possible after. Sounds like that is typically at least a couple of weeks apart. Mainly worried about work schedule right now. I just want them to know too so they can plan. It is going to be hard for them to be down a person.
Hurry up and wait seems to be the theme for this process. :-). I just have to say how grateful I feel to my family, friends, the various medical folks, and my workplace. They are all being so supportive and forgiving as I am so self focused right now. I am truly blessed!
Reading the blogs and other online patient comments, it looks like returning to "normal" can have a pretty wide range of timing. It seems most physicians and their teams typically say 6-8 weeks, but the actual patient experiences I'm reading are more often 8-12 weeks to get back to basic activities and then typically 6 months to a year to really feel "recovered". I'm nearly 60 - and have not exercised regularly for years thinking that it was my fibromyalgia that made me feel so ill after physical activity. I'm starting to consider, however, that I was actually feeling the effects of my valve operating poorly. I would feel EXTREMELY fatigued, listless, sometimes almost flu-like symptoms. In my 20's I used to run a mile or two daily. But then after my son was born in my early 30's, I never really returned to a regular exercise program. I've tried walking programs since, but anything very strenuous left me ill for a couple of days. I hope, after surgery, that I can gradually get back to at least some brisk walking and maybe floor exercises. One of my biggest fears about growing older was never my heart - but getting inflexible and losing strength. That makes me laugh now when I realize that I may have been putting myself into just that condition by not getting my heart checked out more regularly and thoroughly. Well, hopefully I have a second chance coming to get myself in better shape again. If anyone has advice on how long it took them to return to their desk jobs (I work on the computer all day) and steps to making that an easier transition, I would love to hear from you!
Waiting is hard - but probably not as hard as what is ahead!
Journal posted on September 18, 2012
I am trying to NOT read too much on the Internet about this. I have Adam's great book and am reading that and starting to read blogs in this community. But too much information without knowing where I am headed next is just scary. This Friday I meet with Dr. Santos and hopefully he will be able to line out next steps. Dr. Villalon said having a positive attitude, a good support group, and planning ahead for the downtime is the best way to prepare. I am working on keeping my spirits up, I have a terrific group of supporters from home, Church and work. Come Friday I am hoping we can put some structure around plans. While in recovery I plan to start a San Francisco Sourdough starter. I will have to nurse it to good health and cook a lot of bread to keep it healthy. I figure that will be good for me too!
I was scheduled for Anterior Cervical Disk Fusion surgery and had a lung x-ray preop just to make sure no pneumonia. The radiologist thought they saw something in the lung and I was asked to have it checked after surgery. My primary care physician sent me for a CT and they showed clear lungs but a severely calcified aortic valve and a slightly dilated bile duct. Had an EKG which was fine. But the echocardiogram showed velocity of 4.4 and 4.6 on every measurement taken - along with the calcification. My cardiologist has recommended valve replacement. I go in this Friday to discuss next steps. I want to get this done this year if possible - not only for safety but also due to all the other surgery and tests putting me well past my deductible. The ACDF was a success but the bill was a whopping $46,000! Thank goodness for insurance!