Lillian's Journal

So I posted selfie update. I think my scar has healed best it will. A little back ground before a QUESTION for women;I have been having yearly mammograms 30 yrs. In my early 20s I had two separate incidents of golf ball sized breast tumors. Doctors were prepared for my hemophilia response for my second tumor removal. Unfortunately I bleed out after both biopsies and after each emergency surgery . My surgical wounds had to be re opened and kept open with treatments twice daily. (Actually my colon cancer tumor removal was reopened as well and during the months of daily hospital trips for treatment....4 months)......anyway currently since open heart,my right upper chest pain during any twisting,lifting, bending.......Plus, my scar still has some slight tenderness and pain. My mammogram for last 12 months came and went. I asked my primary doctor to do a manual check for me as I had been far too sore yet. Next week I am going to ask my primary to schedule one.I am very used to the discomfort of the procedure. I am wondering when some of the women here had a mammogram post open heart. Due to the fact my body is missing some protective qualities and I get all sorts of "illness",I don't want to wait any longer. I am busy with family obligations,volunteering, my art and music and exercise and cooking healthy.we have had three deaths in the family this spring. So very sad,.I just have lots going on and much is great and good,some bittersweet and some rough.You know, .....that thing called life. This week I went to visit my favorite nurse to have treated me in recent years. She was surprised. I held my last class with LD students wherein I provide opportunities to practice life in society after graduation. So learning to take the city bus,,making choices best for them, hold jobs and pay bills, and much more. I took a photo of the final project on the last day. It was so bittersweet. Their faces or identifying back ground is not in the picture,maybe I will post it. I missed almost all of last year and they had trouble finding a volunteer who understand. This year I have been able to provide the program all second semester. I felt so bad not able to offer something for them. ....so being able was win win ☺. Keep on your journeys and know your heart friends are here to support you.💖💗💖

A lot of Valve procedures today. Jim Hernandez, Kathleen Peterson ,Susan Nelson ,Dustin DeWolf, & Debbie Poole. I am hoping to read some day soon that you and all the many💖 friends here are moving foward and any obstacles, it takes time, are conquered. Healthy heart wishes to all😊

HI, heart friends here is an UPDATE ON MY JOURNEY. Ì finished rehab a few weeks ago. I exceeded all the goals that we set for me. I worked with the cardiac clinicians to choose new home equipment and how to safely aim for new goals. ElipticaI us my favorite and I average 45 minutes 7 days a week first thing in the morning. I gained 23 pounds since surgery. Docs telling me it is often normal after new heart parts with open heart surgery. I had been quite afraid and felt quite delicate up until a couple weeks at rehab. I have new heart issues such as tachycardia, stenosis, other valves leak etc.... i have had a stroke,coma ,infection and two heart attacks in the distant past, I still have visual disturbances and on. My point is I stopped fearing all that and have moved on emotionally regarding my heart. About my keloid scar. It transformed into a more prominent and painful scar than in my picture posted here. I have been using silicone gel and it is quickly smoothing out and lightening the scar. I am entering a hard part of the year when in depression can get severe. I still see therapist every week. I am wondering if my trying to re enter the world more completely post op will add to my Spring depressions.I know last year after colon cancer surgery and deadly infections did add to my depression and i nearly ended life again.It is so back wards fighting so hard struggling to get well emotionally physically.I can't just switch to wellness mentally. I have had two more friends/family die between mid March and mid May. 8 deaths total during spring most all unexpected sudden death. Then the anniversary of my near death experience finally getting medical care 33 years ago on St. Patrick's day.....and I am mostly Irish. Then some other anniversaries such as my Mom's birthday. I am enjoying my loves and joys as I am able and I am indeed blessed. I had trouble signing in here,AND my motivation us up and down on a slippery slope. I wish wellness and peace and joy for all my heart friends. I miss you and think about the support s, I am a bit isolation even within my own self...too empty to stay on top of much lately. But i truly care and greatly, I mean greatly appreciative to you who have reached out to me. I want to hear from you!,💗💗💗

HELLO😊 It is about 3 1/2 months post up. My sternum insicion scar was coming along very well first 6 weeks. It seemed to go through slight changes /phases daily. Now it is thick,raised,darker and more prominent than the photo I posted a while back. It has settled into a keloid scar now. My dermatologist suggested a medical grade silicone scar management products by BIODERMIS.She gave me several forms as samples,these do not need prescriptions. .....they are available online.I haven't learned of keloid scars clearing and smoothing. Are there any of you that were able to "reverse " this thick form of scarring. I will add however,that I don't hide my scar and am not bothered by appearance. It is sensitive to any touch and I don't want it to keep thickening or other negative changes. Any help? Thanks☺

The days melted into weeks and now months too. So much scary stuff went down,I think my brain dissociated some to make it more manageable .I am really hoping that my heart and vascular issues level out into healthier ways.Rehab is interesting as the only opening they have is late afternoon and usually zero to 2 other people during my time slot. I am continuing to fight off my usual depressive darkness and anxiety. I was hoping more would be in my Rehab sessions to help with the dark feelings. I am reconnecting with my fellow volunteer peers. having a little trouble feeling connection to my creative arts. To those of you who celebrate Thanksgiving this week I send Happy Thanksgiving wishes. To all of you I send healthy heart wishes 💗. I send healthy heart wishes to anyone in need of supportive thought and care. A deep hearted thank you so very much to you who follow and keep me in their thoughts ...it matters 💖

I finally got the green light to start Rehab. Still rhythm issues and heart failure issues, but I am feeling much better and they monitor every little thing at rehab as many of you know. I also continue to get echos, Holter, EKG, CT,labs,etc.... testing. Healthy heart wishes to all💗💟

To all of those who follow me.Thank you is not strong enough to express my gratitude to all who have checked in,pray,care,are interested, share,and other support. I have found it hard to read all of your special  stories.it is overwhelming. ...and i am genuinely sorry for stepping back a bit from this wonderful site. I had lots of tests last week. No results yet.once again at 7 weeks post op,I have not received the green light to start rehab. I requested to at least attend the intake appointment for rehab II and it was granted. I am still unaware of what interventions my doctors will decide upon.I ended up in the ER last week yet again.I was checked over by my cardiologist and told I am still stable and for the short term It is okay to have my crazy heart,lung and vascular issues. .......and,soon (hopefully this coming week)decisions null be made. I have felt hope as I have been able to keep my worries to the side. Another nice thing is I am helping a mental health therapist getting her PhD by allowing her to attend a couple of my sessions to learn about the kind of rare and hard to diagnose complex mental health disorder I live with. I have allowed this in the past a couple times to help stop the pain and stigma. Also,I have finished my most recent piano piece. I was close before my surgery .I also have been in my paint studio putting ideas and testing color and texture. And drum roll please, last night was my third night to sleep in my bed AND last night I slept in my usual ore op position and my regular pillow. Yeah😊. So,I have hope and more energy too little by little every few days . Love and care to all of you.Big well wishes for all of you and happiness and peace💗💗💖

I feel kind of good today and Terrie requested an update. Many times I have begun to check in with all of you. I am not doing well. Sometimes I feel hope that all will get ironed out, other times I am too overwhelmed and need to slow down and use mindfulness. Ambulanced and re admitted to hospital twice. Far too many issues to type letter by letter on my tablet, and far too much to keep it "readable " I am stable and home at the moment. I am having issues that will be part of me for my lifetime with or without intervention s. Seems overwhelming. When I think maybe I can indeed deal with a new issue,a new one just as serious arises. I have had to postpone Rehab II two times and still not out of the woods enough. I still follow rehab I by walking with my husband daily as tolerated. I also get out of the house every day. For a while,my heart and lung issues, although serious,they were within normal post op issues. Not normal ranges any more. It is normal for me to have lots of tests and Doctor  appointments.But they are all condensed into such a short time and one year ago I was struggling to get through colon cancer. ...so i am tired .Thank you to all of you who have hoped to hear from me. And also to those of you I had hoped to follow. 💟 💟 💗 exhaustion and headaches and visual disturbances including right eye blindness episodes make it hard to even check if I have any messages. I am still holding on and hopeful things will get ironed out and be less eventful. Not depressed, but struggle with the combination of my mental health issues and physical issues. Hugs to all and thank you hugs as well.😊

I am having problems posting. ...so quick.thank all of you for your thoughts.💟 I tried several times to post.i am okay...pretty good actually and home fri......tablet acing up😠I got to have a repair. ..very difficult procedure. Yeah how blessed am I.i did not forget you .....any of you! !!!!!...i just wasn't able to have a family get out a note. I hope this makes it. I AM worried I lose it AGAIN. I Am delicate physically as you all know at first. ......kinda sick and very wiped out . blood levels low, there is a reason for waiting and going home fri with low levels. Fuzzy head and nausea.went off narcotics Sunday and off tylenol unless needed bit. bleeding disorder responded wonderfully for the surgeon and doc who delt out my dose of blood product and platelet factor. I am unable to read....husband tries .he doesn't get how to post. Am here and I Will try to read about my heart brothers and sisters. Not sure when I will post. I am struggling emotionally and wiped out mentally.i spoke an hour on phone with my mental health therapist today. .....very good support resource as is my family ,close friends , and YOU are so valued and so helpful and kind. You really made this whole thing possible in some way. Love and we'll wishes from my heart to yours 💟

Hi heart friends, I am looking for those with first hand experience regarding the 9 inch sternum after it is closed.What stage post op did you first see your incision? is the bone wired together under the layers of sutures .I am not concerned about scaring as I have several. I am interested in how it first appears. What form of dressing did you have. Most of my incisions from the past we reopened to heal with daily cleaning out and re dressing for several months.i am thinking the chest really needs to stay closed. How many layers of sutures? Also, for the ladies, did you wake up with a "bra like"on. My surgeon said I would. I asked him as i was concerned about gravity pulling on my surgical site.Any information .Thanks. I am more nervous this countdown than I was last week 2 days before the original date. 💟💔

I was prepped, clean, special pre op medication, mind frame prepared by accepting the fear and hope. Late night call from the hospital. Surgeon was doing emergency transplant in the night.My surgery cancelled for today. This afternoon I rescheduled. I know some of you have had this happen.......what a ride...frustrating odd feeling to not being cut into today with my family waiting nearby. Today I had to re wrap my head around the fact of what just occurred. I pray for the donor family and the recipient.💟

In 12 hours the surgical room is mine. Yikes. 9 hours until time to get ready to drive to the hospital. Yikes. Thank you for ALL of the support here from fellow heart friends. I will be back soon💟 I hope things go smoothly for all of you ((((hugs)))) to you. 💕

HI, I will preface this post that I as much as I don't look forward to post op, I do feel confident with my surgeon and his preparations and details of how surgery may progress. I am having the full sternum cut for my ohs. I am curious how different mitral valve repair/replace style of surgeries compare to each other for recovery, abilities physically and mentally, timing of rehab and when return to normal activities (whether or not you feel you have reached your new normal).kind of a wordy question. Thanks for reading.

Today was a long day at the hospital. I knew my mitral valve particularly, is in rough shape. Today the surgeon confirmed Barlow's Disease. This will make a repair very complicated. My surgeon , who does several valves a week, explained that he sees less with this disease. Still consistently has a great success rate 90 percent on the tougher cases. All the conditions my heart has( and some of my other conditions) are basically rooted from the bacterial endocarditis over 30 years ago. I was a very sick young lady for about a year and then another year to recover. I cannot believe my heart lasted this long before my heart failure episodes don't correct themselves anymore. Hugs and care and wishing the best for all of you <3 I am overwhelmed with information today, but it is all in a large handbook with highlights. Tomorrow we go again to make our case with the surgeon that can realize he is in over his head and when we ask for help tomorrow, we hope he will send the referral to the insurance to cover my surgery. Today I had to sign a waiver to self pay. I don't know if I believe this, the thoracic patient learning nurse said that since I have had so many surgeries, specifically the ones thru the abdomen and years of being a pin cushion that I should not be in much pain. New pain, old pain , new frustrations, old frustrations, new fears and old fears they are all very real at the time and the time is again now. I am tired and will check in with all of your another time.

Trouble navigating site to find supports I follow .....Lynn, Mia, Terrie, Olga, Mary, and all of you that I have met...you have been so very helpful? I miss you, think about you, and hope to you☺!.

HI! Like many of us here, we may need blood transfusions. It is very rare that any procedure is done on me outpatient. I have had my share of surgeries. .....i take a clotting med DDAVP ,amoxicillin, cryo and blood transfusions before and after surgery. I still get heparin too, even though it is a clot avoidance injections. Since I have vonWilebrand's factor VII deficiency. I am concerned with surgery, post surgical, recovery period bleeding and hematomas. I am concerned with monitoring . I am also a fall risk( neurological infections I got after heart infection traveled), so I worry even about short term blood thinners post op .I am not a candidate for a tissue calve as it will wear out too soon. I am not great candidate for repair as my sick valve is not degenerative or congenital defect related. It is the result of a long term aggressive infection 32 yrs ago. Repair is still the goal.Anyone else deal with bleeding disorder issues. I am curious how any of you with mechanical replacements deal with blood thinner monitoring? Thanks 💟

I had my TEE 3d today...I have had them before and they are unable to sedate me if any of you follow that. All in all and the end I made it thru and they got good pictures. I had dental visit Friday. The surgeon that is standing n the way of my getting insurance coverage for surgery with my second opinion thoracic team and surgeon......well his office called while we were at hospital to see us tomorrow.....which would be before WED pre op at UW of Madison where I am having my surgery insured or not. I am quite overwhelmed emotionally, must is a normal reaction to all of this. Some stress is elevated versions of my chronic PTSD. How are all of you ?

I deleted my post accidentally. I am tired and overwhelmed beyond any words. I am going to walk away for now. PLEASE know that I appreciate this community and the support and information. Caring wishes to all. Thank you!!

Thanks for all of your support here and information shared prior to today's cath. My arteries are in excellent shape. I did have to stay at hospital ten hours, twice as long as planned, due to my blood clotting issues. It is finally clotted and I am home. Now we wait and see if the DDAVP pre surgical infusion did it's job and when it wears off completely, that I don't not resume bleeding. Sedation did not work but the soreness now is more uncomfortable that the cath procedure. ☺💗

I have had insurance problems this entire process. ...for YEARS! My insurance has fought me every step of the way ,only providing benefits at my local hospital. Since on paper they have cardiologists, several testing resources, and one, the only, very big headed Thoracic surgeon, insurance limits me to their testing services and cardio thoracic surgeon. We have had many medical bills since in real life this local hospital is not equipped for my needs. Also, on paper my case may look straight forward. Well these are far from the truth. This is wrong in so many ways........it is unthinkable in reality. I will continue my path transferring to the UWM hospital and clinic where ever the local one fails us.I have worked hard to find a team and be evaluated yearly to find just the right window of opportunity by protocol. It is not worth risking my current health, prognosis after surgery, and all my complicated risks. Let alone the higher percentage of inadequate surgery wherein there is not back up or a team of thoracic valve specialists. I could end up worse off if I live. My records tell a scary story, but my case is not seen to that degree or level. And this big headed surgeon hasn't ever followed me aside from one visit three years ago.......he treated me like I was on an assembly belt and fitting perfectly into a box. His motto is his way or the highway. Bull. Anyway today's chapter is my insurance digging it's heels in deeper by denying this year's pre op 3 D TEE. They don't even have that resource here....they have begun 2D TEE fairly recently. So that surgeon will be the one to say...nope He can do it locally. I have a real strong history of potentially morbid after surgery complications. AND they are not aggressive enough for long lasting repairs and prefer to replace when the going gets tough in the surgical process.At least I can take comfort in knowing we will be in debt for the rest of our lives when I live many more years by continuing my UW.Process and protocol. But my mental state just gets more wobbly.

Hi, I am grateful for the support today. My sister is a cardiology nurse specialist at the hospital I will be at.....UWMadison.She is also a nursing instructor. She has been out of the country. She is hoping to switch shifts to be present at all my procedures. She is also worked directly at UW with my cardiologist for several years.She still works indirectly with my surgeon. department is on the other side of a door of where I will be after my valve surgery. Her patients are people who are hospitalized for another condition, but also have heart issues. I have learned over the years that, bless her, that all the wonderful assistance and support she is to me, she doesn't know what it feels like to be the heart patient. Your information here has been great and I have only been here a short time. She plans to be at the cath tomorrow. I am very lucky as she helps advocate for me and studies up immediately on any condition s that arise regarding my physical health. I am so glad I found this valve surgery community. ......it compliments what she provides I hope she makes it back to USA today and can be present with my husband at tomorrow's cath. She is part of the code blue team and helped revive my Father in law 2 times when he coded at the hospital.

I have not ever had one of these. ......surprising as I seem to have just about every diagnostic tests over the years. Did any of your surgeons order a cath to use as one of his resources to make his surgical plans. I have a bleeding disorder and had a serious not oh bacterial endocarditis years ago.My interventionist is mire concered about my bleeding issues. I do take antibiotic and factor 8 increasing meds before all procedures.any helpful info regarding the Catherization? I am to arrive at 7 am and if bleeding clots and all else goes well I will be released mid afternoon. Positive vibes sent from my heart to yours💕

Two days ago I met with my Hematologist for pre op. Seeing as I will have surgery in Hospital not partners with my clinic, we not only made surgical plans and post op plans regarding my blood disorder ,we talked via phone with Carbone Cancer Clinic with the doctor I see in that hospital system for surgeries. Seeing as I just spent nearly 6 months same time last year recovering from surgery / treatment for colon cancer surgery, it has not been that long since my last blood transfusions and factor transfusions. So I feel confident with their protocols and such regarding my blood issues. The doctor at Carbone cancer has been on my team for other surgeries in the past. This week I also began checking into what my insurance covers post op.....including durable medical supplies. Well, I actually knew they don't as last year a church lent us a very nice wheelchair for my recovery and we own a recliner. My Mom used a lift chair before she passed , but we found out it was in poor working condition . So my primary doctor (after several calls and explanations ) realized if she gets in the mix of my care givers post op, then she can request the chair be covered....probably in full.She has fought for special meds and specialty care providers before for me and it has all been covered. Are wheel chairs needed after valve surgeries? Mine will not be minimally invasive. Basically I was thinking when husband and I stroll and I need to stop and sit. Or to go out and about and not do all the walking or have to stay home or in the car. I have been getting the pre op jitters.My husband took the two of us on a road trip. We are relaxing in our hotel right now.So, I will take a break from valve surgery issues and relax.

I was not expected to survive the disease of my mitral valve. At the time I had a stroke and was comatose for a short while. After a couple months inpatient treatment I was sent home.I was told that I would require heart surgery sooner or even much later as I lived with serious mitral valve prolapse and regurgitation. I have lived with other disorders and damage associated to my illness back then. I have received yearly testing and different opinions since 1982. Since then, I have visual loss, a balance disorder, and one working kidney associated to the illness.I have lived with limited activity/exercise choices. I have had SEVERAL surgeries and procedures and illness not directly related. I tend to have complications such as bleeding as I was diagnosed with a form of hemophilia in the early 1990s. I had many complications after colon cancer surgery(last month marked a year cancer free). We are hoping for a mitral valve repair as my bleeding disorder and balance issues will add to complications if I am given a mechanical valve. It will be tricky to be sure, but I have faith in my Thoracic surgeon Dr. D. at UW Madison Wisconsin. I have been able to raise a family & be married over 30 years to my best friend. I retired onto permanent disability in 2000. Social security approved my request in less than 6 weeks...... a speed almost unheard of. Especially when you consider my request was due to serious mental illness after a few mental breakdowns. It was the government investigator that insisted on adding my many health issues. She stated that I had most likely adapted to my poor physical health and didn't fully recognize how they impacted and limited me in work and home life. A few years after ending my professional career, I began very part-time volunteer work. Weaker health forced reduction in my volunteer work and I have now taken leave due to my upcoming surgery/recovery period. I am also an artist. I paint with acrylics and compose music. I have been told that I will feel better after my valve surgery. I don't know what "better" means as I have basically felt the same throughout the years. I am very nervous of my upcoming surgery in a month. I will most likely have some form of complications, and I realize everyone is different. I look forward to supportive feedback and information from others with similar surgery on thus resource network. I am also very interested in the degree and forms of depression patients suffer during recovery. I have had two severe/dangerous depressive episodes in the last year partly due to my recovery period after colon cancer surgery. Also, my husband will be my recovery caregiver and he could use supportive information/resources as well. Thank you for reading.