linda's Journal

well i went to see the surgeon -finally!!!!!! i waited 4 very long months as i explained in earlier posts. i had seen the congential heart defect specialist a month ago at boston and she was what along with my happy pills-kept me going: that once i had the appt with the surgeon he would take me to surgery the week after or the following week. well she was the one that called me the end of last week before the appt and said that i didnt need surgery-she wanted me to be ablated again and to go to cardiac rehab and be reassessed again after. so i go see the surgeon and oh yes he said i definetly need surgery pulmonic replacement,tricuspid repair, the hole in my heart that was once repaired to be re repaired,and the maze proceedure for the flutter. i then told him what dr bhatt said-regarding rehab and he said that yes because i smoked (i quit for 2 yrs and had recently started back smoking 3-5 cigerettes a day -no more-which i quit a month ago) that he agreed with her that i should do the rehab. up to that point i asked several questions regarding all my fears such as the increased risks associated with re operations especially when the first one was 50 yrs ago - i directly said to him-what additional steps are you going to take to make sure that i am safe over what you usually do -me knowing the answers of what he should be doing and he did answer my very direct and tough questions . i then told him that i had recently become more short of breath more tired and legs swelling more in past month since i quit and i felt i was getting worse and he stated i should still do the rehab and if i cant do it then i could get the surgery now but he would rather wait and it could be up to 2mths of me in rehab if i could tolerate it - my god i saw purple-that would have me be at six agonizing months that i have lived with this day by day and still no surgery. this cardiac specialist who saw me one month ago should have had me do the rehab then instead of have me wait thinking all this time i finally reached the top of the very hard hill to climb and surgery would be soon.so now i still have no date and feel like im starting the whole proccess from the very beginning -all over again.i understand the importance of the rehab but how i was handled was just so wrong. i left so devastated.what made it worse was my kids and hubby went overboard keep wanting to talk about it and when i made a statement -disagreeing with me -correcting me on how i should feel. esp my huband till the point i screamed at the top of my lungs to leave me alone and let me sort through this or if he didnt i would go to a hotel until i did. finally he backed off-finally -last nite. as for that congenital heart defect specialist-i have lost all faith in her-for not being up front with me and then when i spoke with her last week to say i didnt need surgery to have rehab and she reassess-well unless i change my mind when my long awaited surgery comes when ever that will be------ when she shows up to help take care of me in the hospital i will request someone else-someone who is a straight shooter and talks with me and involves me in my care not talks at me and tells me little bits a time. so forgive me all-as i stated i feel as though ive totally restarted my journey again-chris glad that you made it as they say to the other side-the recovery side. you really have done well and mitch thank you for your encouraging emails take care everyone linda hussey

well i havent posted since feb 20-status quo waiting for my appt with the surgeon and the electrical physiologist (who deals with the conduction system of the heart-i have a flutter which comes and goes). i went to see the adult congenital defect specialist 2 wks ago in boston and spoke to her last week and she felt i didnt need surgery but said she wanted me to have another ablation and go to cardiac rehab and be on fluid restriction so my ankles wont swell??? she wanted me to still see the surgeon tomarrow also in boston at mass general -so i said well if i dont need surgery-by the time i do then i wont have to be cracked open again for another open heart surgery i can have the percuteanus cath surgery and she said well go to cardiac rehab and we will reassess???. before i go to anyones cardiac rehab which i work 2 floors above that on a very busy medical surgical floor on my feet and running all nite--id better have a better explanation-lol. my cardiologist felt i needed pulmonary valve replacement,tricuspid repair and the hole in my heart repatched as there is some regurge going through where it was patched. hopefully the surgeon will have some answers for me and the electric man- tomarrow and the congenital heart defect specialist,surgeon,and the electric man are having a meeting about me on wed of this week and my cardiologist will be talking with them about the results of the meeting and if i dont here from him by next friday then im to call him-geez e moe------- well take care everyone. and i really love this site-everyone has such courage and gives so much encouragement to each other-it keeps my spirits lifted. love u all take care linda hussey

my 25 yr old son said today-hey ma how come your so happy are u on happy pills or something-!!!. Truth be told I did go to my local gp and she gave me an anti depressant and also an anti anxiety. i have been taking the anti depressant,but the anti anxiety made me feel too snowed so i am not taking that-i do have a low tolerance for meds. The anti depressant has certainly taken alot of my anger away and allowed me to put everything in proper prospective and become proactive. I am looking forward to meeting with the surgeon-only 2 wks to go. If he agrees with my local cardiologist that i need surgery- I have a list of questions that i need answered and mass general hospital is 5th in nation for valve replacements so im confident that he will be able to answer them appropiately but if not i will get 2nd opinion. if i do get surgery i will look forward to going to cardiac rehab as my full body makeover as i want to lose weight as well. Bottom line like all of us- I do not want to die. If i have to have surgery again so be it- i still have alot of living to do-i have a wonderful husband who i grew up with. we got married when i was 18 and he was 17. we are now 54 and 53. I also have 3 wonderful grown kids im extremely proud of. god will get us through this- take care everyone, linda

i have an appt to finally meet my surgeon on march 5th. he came highly recomended by my cardiologist and a nurse i work with whos brother had valve replacement surgery with him. ive looked on this sites surgeon locator and only found 2 write ups on him about how nice he is,that he keeps your family updated and that he comes to see u every day in the hospital, but nothing more. he is at mass general hospital which is 5th in nation for valve surgeries-i have looked several places and really cant find out that much except that he has nothing against him as far as disciplines etc.enlighten me!!

on tuesday i will be going for a c pet test-i can not wait!!! i do not exercise,im over weight and i have smoked since i was 13. i quit 1 1/2 yrs ago for a yr but i restarted smoking at the most 5 cigarettes a day for past 6mths and quit a month ago. i do not plan on starting again. kind of ashamed -i am an RN and having a previous heart surgery i should have known better-but its as my kids would say -what ever. now that im over the shock of needing surgery-if the surgeon agrees with my cardiologist;im looking forward to it-time to change my life. im looking forward to the cardiac rehab ,and looking forward to taking better care of myself.

I purchased Adams book this afternoon and i read the entire book. Alot of the technical aspects I was already familiar with-what i was medically in for being an RN. Adam did an amazing job-explaining everything from a patient perspective.How he felt going through the roller coaster of emotions, and challenges with each phase of his journey pre/post op and at home recovery also using alot of the information he gathered from the surveys alot of you did was really helpful. Thank you so much

went to my local pharmacist and asked her to recomend an anti anxiety med that would not intefere with my current meds and that was very mild as a little bit of anything goes a long way with me-and i want to be able to function. she did give me something and i take only a half a dose thank u-lol. which has helped.i wanted to kill someone. im now able to chill a little.march 5 is when i finally meet the surgeon so i had to do something-lol. i am still working 3-4 shifts a week and it helps me keep my sanity. my floor is very busy and i dont have time to think about myself-especially the patients weve been getting for the past mth and a half-they are very very needy. u look down the hall at any given time and the callbells are twinkling like a christmas tree!!! by the end of my shift im tired but its worth it.24 days and counting till i see the surgeon.

Since being told that my valves had gotten worse -the day before thanksgiving-my doctor dr s stated that he wanted me to have a tee.i asked him if we could wait until the holidays were over and he said no because if my valves had gotten worse he wanted it have it fixed while i am still not showing symptoms. i was not scheduled for 3 weeks for the tee and had to wait another week for the results which brought me to 3 days before christmas.at that visit i was told that not only my valves had gotten worse but i have some regurg going through my asd repair (the hole in my heart i had patched) and he wanted me to have a cardiac mri. i waited another 3 weeks for that to be done and another week before i was in to see the dr s. when dr s had said he felt i needed surgery he said he wanted me to have it done at mass general hospital. at my next appt to discuss results of cardiac mri-i basically had to say look ive waited 2 mths knowing i have an 80%chance of needing surgery and i have yet to have an appt scheduled with the surgeon-dr s was planning on doing a cardiac cath but when he could see i had had it-he said he would call boston and get me into to see the surgeon,a cardiologist that specializes in adult congenital heart defects and also an ep doc who specializes in aflutter/fib:dr s wanted to expedite things. well i have seen the cardiologist but im not seeing the ep doc or the surgeon until my appt march 5h-which will be 3 months knowing i have 80% chance of needing surgery. not only has the wait been unbearible i am also an RN-working on a med surgery floor and i have a pretty good idea of what i am in for,the complications that may happen etc and it is making it even worse. i am in a flutter daily now-i have prn lopressor which i take when i feel the flutter starting along with the other meds i take. i am furious i have had to wait so long-any doctors out there-to make a patient wait this long is cruel. i just want it over with.i am still working - the thought of not working just hanging around would only make time go even by even slower even though i carry my prn lopressor in my pocket in case.so there u have it!! i thank god that i have such a wonderful caring loving family. i have a husband that ive had for 35 yrs and 3 beautiful grown children whom i adore. im angry that i have to be putting them through this and angry for what i know they will have to go through going through this adventure with me. i never expected that i would ever have to revisit having open heart surgery again-i barely remember the first surgery which made it even better growing up-it was like it happened to someone else not me. oh well as i said -the wait is on