Lillian Mark Thanks for the support Mia. I appreciate the hugs....very warm and sweet. Cath came out with excellen ... Read more
Lillian Mark Thanks for the support Mia. I appreciate the hugs....very warm and sweet. Cath came out with excellent results. I did bleed extra long despite clotting factor and the plug. Unfortunately I have sedation issues and despite efforts , I was wide awake.
Hugs from my heart to yours.????
On August 13, 2014...
Mary (Mia) posted a note for Lillian that says:
Hello heart sister Lillian,
My name is Mary (mia) from Michigan. I hate a mitral valve replaced on July 29th. My cardiologist had ordered a heart cauterization to check the arteries and valves. I am so blessed my arteries are in pristine condition.(so thankful as my father passed away at age 46 of coronary artery disease.)
As far as the heart cath, I was kind of just in a twilight sleep. I felt only a bit of tugging in the groin area.
After the test I did have to lay flat for three hours. I just relaxed. Once I could sit up then I ate.
The cath provided the information needed for my cardiologist and surgical team. During this test there are many types of measurements taken.
I would not worry about it at all.
I was sore in groin area for about a week. Some bruising.. I would suggest you take at least five days off from an active schedule.
Good luck with your test. Keep us updated on your progress.
Hugs from your new heart sister.
v away
Lillian Mark What a supportive and informative message. Thank you Mia, from my heart to yours????
On August 13, 2014...
Eleanor posted a note for Lillian that says:
Hi, Lillian. My surgeon also wanted a heart cath prior to surgery, to make sure the cardiac arteries were clear and that a bypass was not also called for. For me, the worst part was lying flat for a couple of hours, since I don't tend to lie on my back, but I survived. Luckily you will have your sister with you, I had my daughter as an advocate and to help me pass the time. Good luck with all the prep.
Lillian Mark Thanks Eleanor. It is nice when we can have family or others close to us who stay close by?
On August 13, 2014...
Mary posted a note for Lillian that says:
Lillian, my surgeon ordered cardiac cath as one of my pre-op’s also. Not very comfortable, but it wasn’t bad ;)
Good luck, my heart friend!
Lynn posted a note for Lillian that says:
I think Michael Meyer gave a very good reply! You know I do remember the no lifting too . Just follow their directions and you'll be fine. Boy about your father in law : that could freak me out . But it's the exception as far as I've read . Granted I was very nervous the first time but the second time it was done the day before my surgery and I just spent the night in the hospital and had my surgery the next day . As always , each person is unique but just take it easy for awhile after because it is an invasive procedure but a very common one ! Big hugs!
On August 13, 2014...
Michael Meyer posted a note for Lillian that says:
Lillian:
The catheterization is a standard procedure required by surgeons to ensure there are no arterial problems with the heart. If there are any issues, the interventional cardiologist would typically stent the problem arteries prior to any heart surgery. I found the catheterization to be pretty painless and was awake the entire time. I can understand concerns about the femoral artery and thinned blood. I suspect this will go well and is a necessary step in preparing you for your mitral valve repair. Best wishes
Lillian Mark Michael, I appreciate your taking time to give me that information. You and Lynn Q have calmed my ner ... Read more
Lillian Mark Michael, I appreciate your taking time to give me that information. You and Lynn Q have calmed my nerves a bit more.....and i can pass that on to my husband as well.
On August 13, 2014...
Lynn posted a note for Lillian that says:
I've had 2 heart caths . Both were done from the groin . I get extremely anxious before any tests so I just made sure they medicated me well so I'd relax. My groin was a bit sore but other than that I just rested for a day and was fine . I'm sure if you take antibiotics all will go well . It's a very good test for them to see precisely what's going on because they can take better measurements and see more . I wish you smooth sailing through this!!! I know bleeding is always a concern for your body , and I'm thinking good thoughts for you in that area . Hugs
Lillian Mark Thanks again Lynn. Mine is from groin too.i discussed sedation and pain management with my cardiolo ... Read more
Lillian Mark Thanks again Lynn. Mine is from groin too.i discussed sedation and pain management with my cardiologist who will perform it and with my mental health therapist.I am glad you mentioned the groin soreness and about a day to recover.I was told no lifting for a week.Any one told that?
My father in law coded when he had two separate ones. Last year he passed last year. He did not take care of himself, but it still creeps me out knowing that.
On August 6, 2014...
Lynn posted a note for Lillian that says:
Well I'll tell you Lillian that's a horror life story!!! I'm surprised you trust anyone ... Ever!! Btw .. As far as being medicated I have trouble there too , but since I've been telling my doctors that I have major anxiety from being sexually abused and have a resistance to being sedated , they really really sedate me and I'm not wake for anything ! You may be even more resistant and maybe your doctors are not listening but I'd demand as much medication as is safe !!! There's no need to suffer!!!
Thank you for sharing such hard things !! You have nothing to be ashamed about and I'm glad you see that now!! I have eliminated ALL toxic people including family from my life!! That was the only way to get sane because they never never stop!! You always must protect yourself !!! The fact that you have lived through all this suffering tells me you are so strong... Although I'm sure you don't feel it!! It's really time to heal your heart physically and mentally ! And do whatever is necessary to get all your needs met and know you deserve only the best of everything!!! My heart goes out to you but I know you can get through this surgery safely and demand the best of care and keep people who make you feel bad out of your life!!! There's no room for them on your healing path!!! That includes doctors who are not listening or not giving you what you need!!! There are other doctors who care!! I went through 3 cardiologists before I found one that was not belittling or condescending and actually cared what I said! I let my surgeon know how terrified I was that I would wake up during surgery and my anathesiologist too!! I got plenty of medication !! I wish I could be there to be your advocate but I know you can do this and come out of it better than before. Please keep posting and take as good care of yourself as you have so many others in your life!!! You deserve to enjoy life !! NOW!! Your world is not small you're just finally honoring yourself and making your world safe for YOU!! My healing thoughts always coming your way!!!
Lillian Mark Quick note. .....i will attempt again regarding sedation. My doctors for the most part seem to unders ... Read more
Lillian Mark Quick note. .....i will attempt again regarding sedation. My doctors for the most part seem to understand and give me as much and as many sedatives...twilight etc as safely possible. The profafol they use works very well, but the testing areas are not all able to use it, I will re try.......thanks for sharing that advice. Trust? ....i barely trust anyone and there are only a few people I trust as much as I can.i don't even trust myself to keep me safe and to belive myself due to the flashbacks triggers and brainwashed thinking. I will read rest of you note later...i am actually still in bed 5 20a
Lillian Mark Hugs and more hugs and thanks Lynn! You get it totally. You validate and are so wise on these issues ... Read more
Lillian Mark Hugs and more hugs and thanks Lynn! You get it totally. You validate and are so wise on these issues (unfortunately we have to be due to circumstances out of our control). Thanks for the Unconditional support. I am very impressed and appreciate YOUR strength. Keep on.....from my heart to yours.
On August 6, 2014...
Lynn posted a note for Lillian that says:
Lillian ,
To answer your questions : no I have not ever led what could be called an active life. I got Chronic Fatigue Syndrome in my early 30's before anyone knew what it was and took me years to get a diagnosis so I did lots of alternative things because the doctors told me it was in my mind! And I did have a lot of depression then and actually my whole life. I know the struggle to want to stay here and not kill yourself... In fact after this surgery is the first time in my life that struggle has disappeared!!! No one is more surprised than me about this change and I don't know why either but am hoping it lasts. The stigma of mental illness is so strong in our culture and it really stops us from sharing these things with people and makes us feel ashamed. I can bet you got more help and support openly for your cancer than your mental illness ? That's a good reason to write a book!! Get people more comfortable with talking about these things!!! It took awhile before people would even mention cancer too! Well anyway between my CFS and depression I had lots of ups and downs and exercise was difficult so the slow onset of my bad valve I just kept chalking up to all these things and not enough exercise :) it was my primary care doctor who heard my murmur and got tests and off to cardiologist and my first surgery weeks later cause I was so bad! So when I start rehab it will be a major lifestyle change and I'm nervous but excited .
How did I get myself out of that dark place? Well I hadn't read Adams book the first surgery so I took medication for the dibilating panic attacks and then to get off I found a new therapist that helped me through and validated my hard surgery! I go to her now still . I have to say starting at around 42 I also started to handle having been molested by my dad , almost killed by my mother and raped by my second x husband , not to mention all the other abuse I experienced growing up. Had a few bad therapists and psychiatrists myself earlier so took me awhile to trust the profession again.
Anyway, the lovely lady I see now is the best and with her guidance I got through the cardiac depression the first time . I really think reading Adams book before my second surgery , oh and also Robbie Benson's book " I'm not dead yet " was inspiring to me! He'd had open heart surgery 4 times!!! So I was prepared for this cardiac depression and it helped to know it happened to lots of people and you can get over it!! I have to say this second time is different for me , but you know how it is when you've dealt with mental issues your whole life... Always on the alert for more . Now I am focusing on what it is that can make ME feel good because I feel life is only now and we just don't know how long or how many good days are ahead!! Always put my needs aside for family and friends but I'm looking at things differently and am back to my art and making the most of each day and knowing I will handle whatever comes my way the best I can with help .
Now for really practical stuff, the electric recliner is a must!!! I rented one for a month and it was a blessing ! And yes I slept in it and lived in it !! 2 months might've been even better because I ended up with complications ... Afib and medication problems and bladder infection and pulmonary effusion .. thank goodness are all gone now !! Had no complications the first time except medication . So get an electric recliner for sure!! Keep going to your therapist absolutely ! And never give up on life!!! There is so much beauty all around including us!! What an amazing piece of work we are to be able to heal from so many things thrown at us!!! We are all miracles and unique !!! Embrace your uniqueness and get lots of information and keep being the amazing survivor you are!!! Truly after all you've been through , this operation holds nothing new for you!! Just another recovery and another chance to live and love!!! Take life at your own pace and keep hanging in there!!! I'm here and you're not alone !!
Btw I didn't take the bad news stuff well:) it was hard and I cried a lot and my husband always got an earful!! But you know, what are you gona do but keep pushing through and hope you get through to the other side . I had a couple of friends who also spent much time listening to me and giving me hope !! The recovery was hard for me and for some not so hard but I think it's much longer than the doctors say . You just never know and unfortunately you been there before. But the alternative is not what we want:) so again , hang in there and take it a step at a time ! Big hugs!!
Lillian Mark Oh Lynn, I don't know where to start.....please excuse my disorganized mindset. YOUR words were amazi ... Read more
Lillian Mark Oh Lynn, I don't know where to start.....please excuse my disorganized mindset. YOUR words were amazing to read thank you for sharing. My Dad has the electric recliner as I found one on Craigs list for my mom .We lost her to Alzheimers 4 years ago. Just before her illness really took off, we moved back to our home town. I got really friendly with my mom and for the first time she was able to accept my mental health issues......including my feelings and believing my story. I was very I'll at 18.i missed senior year high school. My Parents never took me to a doctor until I went blind and weighed 90 pounds......i was sick MONTHS with the ( untreated undiagnosed)heart infection, a very painful disease. The doctors were old friends ( our family is well known in my hometown).....They did nothing. Our family doctor didn't listen to my heart or take tests for infection. He said I was anorexic and just needed mom's cooking and sent me back to school with two weeks no gym.i was a size nine 5th in prior. Someone gave me two dize 4 skacks. I pinned my size four pants down to a stick size and went to school. I couldn't walk a straight libe, walked into
Lillian Mark I pressed send to early, start with "oh Lynn" post.
I could barely see or walk at school.....amazing ... Read more
Lillian Mark I pressed send to early, start with "oh Lynn" post.
I could barely see or walk at school.....amazing No one noticed. Mom took me to eye doctor. ...some vision returned, but I saw rainbows and had severe headaches.EYE DOCTOR FOR BLINDNESS......REALLY!!?? He suggested a higher level specialist. That doc scheduled an mri, I had seizures one night prior to mri and Finally rushed to hosp. So basically I was neglected emotionally ......always having to smile or go to bedroom.well I got more and more needy as I grew, so more alone time. BUT I had an uncle in town who appreciated my neediness. So from very very very early on he sexually abused me ....brainwashed me with neglect and abandonment tactics. I was molested by a neighbor and two other uncles when they visited our town in our home. I ask ed my mom to please tell them to stop touching me. She responded, " the time to worry is when they don't want you around".....i was about 7 or 8 when I first spoke up. I never mentioned the other uncle as he had me programmed to believe I was responsible for our relationship. Up until last year he has popped up and touched me and whispered junk to me. I am 50. This year I re amped up my dissociation of him.....i don't see hear or feel him. I live a dissociated life. I have been physically and emotionally abused by my spouse and watched my children be beat up as I was shoved away. I was able to get help ....intensive for all of us. Husband relapsed a couple times and went back for serious help He is my current husband and has continued to treat me like a princess and our adult sons as very special gifts for about 15 years and our home has been free of little set back incidents for about 5 years.i have been sexually used by doctors, and health/mental health caregivers. I have only recently felt safe from uncle (he messes with my mind).....i reached a point in my mental health to be able to stay far from him or be escorted by my sis or husband so he leaves me alone. I am also only very recently feeling safer in my home or anywhere. 14 years of therapy.my PTSD is still constantly hyperv igilant. I was diagnosed with Chronic fatigue syndrome in my late twenties. Any moment I could sneak in time at home or work or out and about, to sit and lay my head down. This was at the same time as being vigilant to my surroundings.I really pushed my self to stay very active ....and i still push myself due to old brainwashing . I am doing better and better learning to self care, get needs met, get to know and enjoy my whole self and what I have to iffer foEnd of 2011 when the Penn state sexually abuse story came out, I began re remembering my abusive childhood and marriage again
Lillian Mark I just realized I am reaching out to share more and more of my story and not feel ashamed or unworthy ... Read more
Lillian Mark I just realized I am reaching out to share more and more of my story and not feel ashamed or unworthy. This does relate to heart surgery as life throws so much at me and others I am sure and it all matters and "counts" as a whole picture. I will wrap this up and come back when I shift to the other aspects that brought me to this website. Any way, I am in extreme hyper mode since 2011.it hides my exhaust ion as I am on edge looking out for danger at all all all minutes of the day. I used to stay physically active almost like OCD, now I work out to stay healthy yes but also very active to expel my hyperarousal and anxiety throughout the day. I am amazed my heart has lasted this long. I am very educated in heart valve issues as I have had to advocate for myself once I realized not getting needs met as a child is not something I wanted to continue physically and medically. I didn't realize my disordered mind until I was late thirties.....hence staying in a scary painful marriage . My hyper PTSD state keeps me from being sedated......example, I was wide awake for tests such as colonoscopies, TEE and my upcoming heart cath and TEE I will be awake. My colon recheck is with the " Michel Jackson" med that killed him.but under hospital ized constant monitoring. I was told they can't do that for any of my pro op tests. Okay, I will come back when I am ready to respond to your input. A very short edited version of my life with my mental state in published on the bringchange2mind website created by Glenn Close to advocate for ending stigma. YES, I had far more support during cancer! ! people often turn away from me if I "show or speak" of my mental health. Having the blues and picking self up by bootstrap s and seeing the bright side is about the most many people and health care givers can take. Unfortunately it is woven Into my life in all areas. I am very proud if my accomplishments mentally and finding joy within my little world.
On August 6, 2014...
Another patient, Eleanor posted a note for Lillian that says:
Hello, Lillian. I had my aortic valve replaced 22 days ago, here locally at a great Heart Institute. All went well, with less drama than I had anticipated, a bit of pain, nausea, and fear at first. Somehow I trusted the surgeon and knew he would not mess up. The harder part is our part, the recovery. For that, lots of rest, a bit of walking, even in the house, and remembering to breath deeply and use that dreaded spirometer, to wake our lungs back up and prevent pneumonia. I am getting stronger and my chest is less of an issue. I rented an electric recliner, so glad I did, I've slept in it every night, as it lifts me up and out without me having to use my chest. I will probably renew the rental for an additional month, until I am fully able to get in bed, roll over and get upright with ease. I've been tired after the surgery, so I rest and read or watch TV or videos, enjoying having my daughter stay with me and do "old lady activities" like puzzles, cooking, and gardening (she pulls weeks, I watch). Best of wishes to you, I hope for a great outcome for you.
Lillian Mark THANK YOU.
I am looking into getting the recliner. It is nice your daughter is there. We are still w ... Read more
Lillian Mark THANK YOU.
I am looking into getting the recliner. It is nice your daughter is there. We are still working on who will be there for me. I like your positive vibe and what you shared. I appreciate that you visited my page.
On August 6, 2014...
Kels posted a note for Lillian that says:
Hi Lillian
Firstly I would like to see I'm really pleased you have past the yr mark with your cancer that is really good news. You are stronger than you think you have come a long way with a string of illness. You are still had the strength to come on here and chat so thats a positive note even though may not feel like it. Like Lynn has mentioned already today these operations are far more updated now. They are working on updating vales and various ways to do the operation all the time. Remember your surgeon or any surgeon that had done this operation has done this a 1000 plus times.I bought Adams book The patients guide to heart valve surgery and haven't stopped reading it yet. Its an inspiring book with loads of information in it. I also decided to start my own pvt group on facebook on my progress as well as here.And put more updates on there as well as information as I have a lot of family and friends contacting me regular and a lot of them are on there.Its easier to put one update on there and on here than txti and calling everyone. Many wont do that or are not interested which is fine. Having a support group is important hubby friends and family they need to know what is going on and what they can do to help and make your like easier before your operation and after. But having said that we all have our own ways of doing this and letting them know.
When I was first told about my operation I had know Idea that I was even ill. Had various signs but thought that was all down to arthritis in my lower spine.I had a bad dose of flue and a serious cough was off work to weeks couldn't walk was too ill. So went in to get something for the cough. Was sent straight to hospital for bloods and chest xrays. Four days later they call me back to hospital for a whole lot of tests over a few weeks then two weeks after my birthday 17 June I was told you need a heart operation. I only went to the Drs for something for a cough. I've not picked up from that flue in April. So I can understand full were your coming from about being nervous and worried I'm am to.Its only been 18 weeks since I had flue-to be talking to a surgeon about my heart op.
I've done a lot of homework/and research on this op and the different valves. So pretty clued up on it at this point had to be as I have my first chat with my surgeon this afternoon. I'm still worried and scared myself like most people in my position. But I do know that he knows what he is doing and I'm not the first. As for feeling better after there will be a vast difference. Do you get tired or breathless or struggle with certain things. Some people do not and even up to the surgery still run. For me that is in the future now walking is a struggle :(
Up till your surgery you can keep busy with your painting with acrylics and composing music. That's great you will keep the mind busy most of the time. If you find it dose become over whelming you need to keep your Drs informed perhaphs talking on here and with a group face to face may help.I find talking to my fionce and a close friend helps when I want to cry or just vent I'm also prone to panic attacks if very stressed/worried. I'm sure your Dr will give good advice as what is the best way forward to keep you on top of things. I'm pretty limited to what I do as I get breathless and always tired around 2pm ish every day. We had to make our dinning room into a posh hospital bedroom (that's what I call it). As was struggling with the stairs.
I will be having an Aortic Valve replaced so different to yours but we are all part of the same heart family. You are a star you have fought a long hard battle with various illness. You will be fine and this will be a stepping stone to a better fixed heart.
Sending healing thoughts and very best wishes to you on your new journey
Lillian Mark I appreciate all the information. I am glad you could share about the crying, panic issues, and stres ... Read more
Lillian Mark I appreciate all the information. I am glad you could share about the crying, panic issues, and stress. That is part of my regular life. I am going to re read your post when I feel more able to focus......feeling over overwhelmed.
On August 5, 2014...
Lynn Quast posted a note for Lillian that says:
Well Lillian I'm not sure what to say!! You've really been through it in your life and I would love to see you get a break!! You don't say if you have a good therapist to help you through all this stuff because it sounds like you could use one ... I know I have one and she has been a blessing because my lovely husband sure needs help to help me mentally ! Nowadays doctors are very experienced at these surgeries so outcomes are remarkably good ! Have you read Adams book? If not, do because it really helped a lot of us . Seems you have some very extraordinary difficulties that I have not experienced, but I have had 2 open heart surgeries and am improving slowly ( am 67 and have been very sedentary ) but am now ready after 4months to start cardio rehab . I had terrible cardiac depression after my first surgery but got therapy and really helped. Am having a little this time but am coming out of it faster . I have a great deal of trouble with medications ... Some make me suicidal so I just can't take them. So I would suggest to always look up your medication online to see if any cause mood swings, depression or any mental problem because you could be susceptible to that and doctors don't always know all side effects for all drugs. Whenever I get those reactions I just stop taking them and call the doctor and by the time they tell me to stop I've already done it and felt better. It's so important to be your own advocate and know yourself!!
I'm sure with all the knowledge out there now about all these surgeries , you will come through this and be better than before!! You're obviously a survivor and very brave !!! Keep getting fortified with knowledge and your husband too and keep posting please! My best wishes and healing thoughts are with you!!
Lillian Mark Lynn,
I really appreciate your remarks. I read through much of your journaling. I could not believe ... Read more
Lillian Mark Lynn,
I really appreciate your remarks. I read through much of your journaling. I could not believe you had heart surgery already in recent years.You are brave, and it sounds like recovery is finally going to get yourself back. I love your positive comments, AND, that you included the not so positive thoughts. I do deserve a break, Thank you for noticing. I have had and live with far more issues than I could ever post here. I have been asked three times to write a book, but I regressed emotionally, so I tell myself I do not need to do it .I began weekly intensive psychotherapy in 2000. Due to moving and several insurance changes, I did not always get the greatest mental health care givers. I have been in psych hospital 14 times, and severely suicidal about three times a year and suicidal thinking is a regular part of everyday or so. I finally landed in the care of a really good therapist again finally in March of 2012. I see him for 55 to 65 min weekly and then phone contact inbetween.I see a psychiatrist monthly who is a great part of my team as is my primary care physician. I will have phone sessions if needed.I tend to pay close attention to negative med responses, but your advice is so appreciated. ....I will research and be cognizant of med related mood shifts! THANK YOU for addressing the depression aspects. I am noticing an increasing change in my motivation, ability to juggle life, and heart surgery fears. I am making my world small and trying not to push myself so hard. ...i have nothing to prove, but there are things I want to accomplish pre op aside from all my medically related pre op consults and tests.But, I am slowing down to limit the stress. I have been quite active , including daily exercise routines, rest and diet since 2001 minus "bedridden"depressive or medically necessary breaks. Have you led an active lifestyle not counting your recovery periods? I read where you "knew what to do" during cardiac depression, but you were not able to carry them out. I get that. I get that some doctors don't get a lot of the psychological affects.Was there anything that you were able to do to help climb out of that lonely scary dark place? I will take your advice and read the book. Aside from a weeks difference, I am having my open heart one year after my last colon surgery. I was very sick, bled out a few times plus two surgical site infections and they had to cut me back open to clean me out daily. I was back to myself almost 6 months later.I am so scared of things going wrong. Not that you said a bunch went wrong for you but you seemed to take the bad news stuff fairly well. I hope I can. I have a great husband too.He is currently looking for a electric recliner. I used a standard one for those 6 months last year. I slept the for a few months too. Did you or do you sleep in the recliner? Take care Lynn, Thank you!
You will do fine. The docs will have more information to use in planning your surgery.
Looking forward to getting to know you better. Our heart family is such a blessing. Am thankful that Adam wrote his book and started the website.
Butterfly hugs, Eskimo hugs and heart hugs from my healthier heart to you.
Hugs from my heart to yours.????