Kimberly's Guestbook

Richard Hines  Dr doesn’t see where a cardioversion or even an ablation would fix anything. I seem to be functioning ok anyway. Also, reports from friends who’ve had both procedures have said that they work for a while but don’t last. One friend has lived with it for 27 years and does fine. I think I’m just going to life with it. 

Kimberly Eisenhut  I'm also thinking of just living with my junctional arythmia, as the alternatives are not very safe. I just have to run it by my cardiologist and have her on board as I do not want them dropping me as a patient because they think I'm too difficult or won't take Flecainide or try the cryoablation because I'm being stubborn or something. I'm having some trust issues for sure at this point .They just don't seem to want to look deeper and find out what is causing this at all! I'm very frustrated and "stuck" at this point. Electrophysiologist just seems to think it's totally safe to take and says she gives it to her pregnant patients at higher doses and they're ok. Well they have other rhythm issues, not what I have. How can you compare the two? Not evidence based at all and she admitted they have no real experience with my exact situation. This medication cannot be taken if you have sinus node disfunction and they've not ruled that out. It literally has a black box warning listing all of these things and suggesting close monitoring when starting it . Ok, well I asked about that and she said she'd order a zio patch for a month after I start it !? Huh? I just don't want to end up having another more serious arythmia and then go through more hospital stays, surgeries, medications that may or may not help, etc... Any feedback is welcome . I need a break from all this health stuff. Unfortunately I have narrow angle glaucoma, cataract in both eyes now, and need ultrasound and many other tests because when I had the two MRIs before and after surgery and several CT scans these past 6 months, they found cysts on my liver, adrenal gland , gallbladder, and few other places. All look to be nothing concerning, but need everything checked now. Liver specialist, gastro, endocrinologist apts coming up. Put them off because of everything else . Endo wants me to do this 24 hour urine collection test, it's a crazy one too. Two jugs that need to be kept refrigerated, lol! They'll be out in my cooler with a bag of ice, of course! That should be fun in middle of the night 😂 Every time I go, collect in the "hat" (we all know what those are), then quickly pour all into this funnel that you're supposed to make sure it goes equally into each of the two jugs, ok then!🙄 That should be interesting . Then second part of test is to take this low dose cortisone pill at 11p.m., (whole bunch of restrictions for up to 5 days before this one, like no Tylenol, no cold meds, no coffee, not even decaf, which I drink, no dark chocolate, etc.) then go at certain time, no food or drink to get a blood test next day. Instructions are confusing, so I'll probably call the office to ask again. Ultrasound from gastro is wed., getting my high sensitivity CRP tested again (blood test) and my physical with my PCP . Oh, also going to see optometrist tomorrow for exam since my opthomilogist said to wait a few months after surgery to get new glasses because my vision changed a lot afterwards. Can't read my laptop screen like I could before surgery, or my watch. Old glasses didn't help any more ,so I've been just wearing reading glasses for everything and pulling my laptop up closer to my face. I'm fine with the tv distance though., that's something 😊 Tomorrow also have video visit with my surgeon Dr Malaisrie at 3 pm. I have some questions about the 4 clips he used during surgery , my allergies and what his experience has been with patients who've developed complications like mine. I need to try to convince him to get my allergist a sample of the Medtronic ring and clips he used so she can test them on me. Thinking he's not going to help me, but I can hope . Wouldn't supply her with sample of contour ring for my tricuspid when she asked for it before surgery, but I'm hoping maybe since I'm having problems , they'll be more interested. That, or just brush me off again. Maybe I should give in on that point, as the stuff is in me now, not like I can take it out if I'm allergic to any of it . Well, hope everyone is doing well and please don't take all my blabbering to heart, I'm just venting. I'm doing ok and am living each day as it comes like so many of you🫶😊🙏
Sending lots of love and hugs to everyone 🫂❤️‍🩹

Kimberly Eisenhut  Melinda, Thank you for asking. I am doing o.k. Just figuring out how to navigate life now and get used to living with my life the best I can and find ways to smile and find some happiness each day. I will attempt to start cardiac rehab at end of march. I am hopeful they can help me get some energy back and be able to at least walk through a store or do some more simple things every day like I used to. I try keeping busy with little hobbies, but its just not the same as working my Etsy shop and also hoping I can start stamping my own orders soon so my daughter doesn't have to keep doing it for me. How are you doing? You seem to really be moving forward well these days and I am so happy for you!

Melinda Donahue  Hi Kimberly. I am moving along thankfully. Am going to cardiac rehab and it helps a lot. You are with others and your exercise is monitored with a 3 leas monitor and watching your heart on the monitor gives you some confidence. I am still very nervous - still in the ptsd part of my journey.  Changing cardiologist was key for me. Still have pain in the sternum and pvcs and PACs but the cardiologist talks me off the ‘ledge’. 

Did you get some help? Are you feeling better ?  I hope so. I so hope rehab helps you xo

Pamela Gregory  Glad to hear you Kimberly! Cardiac Rehab will be a really good thing for you because they will monitor you as you try to do more and you can talk to them on the spot about how you are feeling. Sending xoxoxo and strength to you

Richard Munson  Nice to hear my hvs step daughter is improving. Nice to hear my favorite worry wart melinda is going to rehab. 

Kimberly Eisenhut  Richard, thank you. I'm really having a tough time today with crazy palpitations so not sure what is happening. Please God give me strength today and be with all of my hvs family as well🙏🫶❤️‍🩹

Melinda Donahue  Me 5. Kimberly I still don’t know how to maneuver thru this site very well, but I honestly search for your posts.  I hope you are doing well. I honestly think of you every day. ❤️❤️

Kimberly Eisenhut  I'm sorry I haven't written recently. I'm trying to wait until this accelerated junctional arythmia is settled down or better controlled. Started Metoprolol 12.5mg twice a day to see if it'll help . Still back and forth all day between junctional and sinus rhythm. Chest pain at times, extreme fatigue, heart pounding, just plain aggravating every day. I'm very grateful to be here and hopeful the electrophysiologists can help, but they are saying to there's no a "fix" for this. It would have to just go back to sinus on its own, the meds are just for me to feel better, which is really not doing much. Next could be possible ablation or pacemaker, but for me and my tricuspid is not the best idea. I see Dr Kim again on March 3rd. I'm wearing a zio monitor again for two weeks and we will see I guess . Still have to sleep with my wedge and lots of pillows. Difficult to to anything still after 5 months, but I know it can take 3 months to heal from pericarditis, especially as bad as I had it. Rinolacept is keeping my inflammation and CRP normal. These injections are a while other issue also, but won't go into that. Just not what I signed up for, but I'm still here👍❤️‍🩹
Love to you all and wish everyone all the best always🫶
Thank you for thinking of me, it means a lot.

Melinda Donahue  Kimberly gosh you have been through so much. Why didn’t docs put you on extended release metoprolol. I was on 12.5 twice a day and it made me so dizzy!  Taking 25 mg succinate at 6 pm at night helped a lot.  

I hope you wake up one day and you are in sinus for good!  I was in 2nd degree av block and junctional arrhythmia with a heart rate of 35. Thankfully improvement slowly began on day 8 while in icu. 

I think of you each day and honestly check often  hoping I will find you posted and are feeling better.  I know it will happen. ❤️❤️

Ana Brusso  So sorry you are still having all these issues. I have not stopped praying for your healing. Will continue to do so. God has a different time than we do. God bless you 🙏❤️

Kimberly Eisenhut  I'll ask about 25 ml once at night. I'ts supposed to help irregular heartbeat, but I seem to be getting more of them now. Wasn't having irregular beats before , only junctional. Why is everything so different for me!? Frustrating to I say the least. I am disappointed on the Drs lack of concern. I think I should be in hospital until this is figured out, but they say it's not necessary. How am I supposed to deal with this at home, just try new meds, not know how I'll react to them, especially if she decides to put me on Flaicenide, which has a black box warning and just told to let them know my symptoms when they don't get back to me for a couple days most times. Then wonder every day if it's warranted to go to ER or not when I have chest pain and so many irregular rhythms. The pericardia specialist was great and watched his messages every day and helped me, but the electrophysiologists just does not communicate, only get her nurse and no real answers.  Still can't do anything normal like going grocery shopping, driving, just taking a walk down the street, going out on back porch with dog puts me into irregular rhythms now like extra beats and constant in and out of sinus and junctional. That just started after starting Metropolol , which is supposed to stop that sort of thing! Please God help my heart go to sinus and stay there and give me my life back🙏

Melinda Donahue  Kimberly, is there anyway that you can change electrophysiologist? I know we all have our situations and this is not about me. It is about you, but I had cardiologist who really didn’t give a hoot about what I was saying to him always referred me to his medical assistant who he called his nurse practitioner, but wasn’t changing cardiologist really was a world of difference for me. I’m with this practice since December and she put me on a halter monitor for two weeks, which she said I couldn’t be on. She sent me to cardiac rehab, which she said I didn’t need. Maybe you need to change electrophysiologists sometimes the answer is the obvious answer, but we don’t realize it because we want to trust them

Melinda Donahue  I hope one day you wake up and this is all behind you. I understand how you feel believe me, however I didn’t feel like that to that level as long as you.

Fidel Martínez Ruiz  Hey Kimberly I´m sorry you´re still fighting with your heart rithm. I wonder if it could depend on the metropolol dose. I am taking bisoprolol, a similar drug and had some problems with the dose in the beginning, and it was changed and adjusted by the cardiologist. Best wishes. Godspeed .

Kimberly Eisenhut  Melinda, I may try changing, it's just hard because they're all with same hospital. I'll ask if I can see someone else there. 
I'm so happy you're getting the help you need now .
I am wearing a monitor for the 2nd time actually. I also am supposed to be starting rehab next month finally. If I can do it remains to be seen, but I'm hopeful. I've tried two different doses of Metoprolol and now she's talking about Flaicenide, which I'd rather not take because of the black box warnings, my older son took Cipro years ago for an infection and has never been the same so im understandably terrified to take it and I told her this! It's horrible stuff; it now has a black box warning (Cipro). 
 My daughter says to just do what they say, but I know better than to just blindly do whatever a Dr says without at least doing some research first. 
If she would give me more information and talk more about the goal with the medication it would help. She's great at hugging and holding my hand, literally, at apts, but when it comes to actually explaining things as far as medications, side affects, why and what the end goal is, I get nothing. It's just her nurse that communicates.
 Finally got a response from Dr tonight and it was just numbered with perfunctory; this med, that med, then ablation, you decide. Huh?
1.
2.
3.
 With my options left up to me entirely and in what order. Ablation being last and saying 85% success with 2-3% complications rate transcatheter route. I asked what rates are for my particular situation, because my situation is not typically why or when they do them, it's extremely rare. My exact situation that is. We will see if she responds or has her nurse do it. Turning in the zio heart monitor Wed and guess maybe that'll help, idk.
Not happy at all . Needless to say I messaged back and if I do not get answers that are satisfactory, I'll need to ask for a different Dr. Am I being over the top or what? Should I just do whatever she says without question ? I just don't know any more🥴😭 help me my hvs family! 🙏

Kimberly Eisenhut  Ana, thank you for the prayers , they are always welcome🙏🫶 I appreciate and love you all, my hvs sisters and brothers ❤️‍🩹

Melinda Donahue  Kimberly just because they are at the same hospital doesn’t mean you have to stay. I left my cardiologist because he was flippant - everything was speak to the medical assistant and I couldn’t even get an appointment with him unless the (not NP) said it was necessary. Everything was ask the surgeon, and the surgeon’s office at Mount Sinai was perfect-the NP’’s were perfection. It seemed like the cardiologist wasn’t involved or
didnt want to be involved in post surgical care.  Once he referred me for surgery it was like his mission was complete. Treating the whole patient was not what he wanted to do. 

I was left with so many questions unanswered and wondered if I had afib or not, bp would spike, chest hurt a lot, etc. 

The final blow was on a call to make an appointment and the receptionist told me she would have to ask the medical assistant if it was OK to see the cardiologist. At that point, I collected my thoughts and found a new cardiologist. Within that month, I was told I should see a psychologist. I did see a psychologist and what I figured out was I felt like I was not being cared for by my cardiologist and I needed to move on.

I found a new practice and read all the reviews and not only an excellent cardiologist, but listened. I made an appointment with the practice and was assigned a female cardiologist. The first thing she did was put a holter monitor on me for two weeks and found I do have PVCs and PACs, but no indication of a fib. Previous practice said I could not have one for more that three days. My blood pressure does go up and it’s because I am reactive and nervous. The pain in my chest is normal post surgery. 

she questioned why I was still on 325 mg of aspirin, why I didn’t go to cardiac rehab and called the surgeons office and spoke to them even though she is not affiliated with Mount Sinai Hospital as the last practice was.  

mentally emotionally I feel like I’m more stable. And I know you’re going through an awful lot but you need somebody who will make you feel that you’re OK. I don’t think there’s a problem with having a doctor that is not in the hospital. They do talk to each other

I feel terrible for you because I put myself in your shoes and I feel terrible for you

Kimberly Eisenhut  Thank you Melinda, it's hard because some Drs just make you feel like it's your problem, handle it, don't ask questions, just do and take what we say without question and act like you're being unreasonable for advocating and actually making be trying to figure out what will work best for you as an individual and not just another patient. My circumstances are much different than the average patient she has and the even admitted that she's literally only had a handful of patients with my particular situation, so how can she be so flippant and make me feel like I'm annoying her nurse by asking too many questions? I believe it's called gaslighting and I do not appreciate it. We go through enough and just need to be heard when something is not right . I've caught AFib today on my kardia and many times in past week have cought sinus rhythm with superventricular ectopy. I'm going to see her again on the 3rd, but will ask to see someone else of things don't go well.

Melinda Donahue  Good please see someone else. You need someone with more experience with your situation. Sending love and prayers. 

Kimberly Eisenhut  Just took a shower and heart pounding and so hard to be this way for so long! In junctional again, I'm in heck and want off this ride please! Thank you for your prayers🙏 hope it settles down so I can get a little rest tonight please God🙏

Kimberly Eisenhut  I'm still here , just struggling with this junctional arythmia. Still cannot function because of it . I started the Arcalyst (Rilonocept) injections 3 weeks ago and the pericarditis is now cleared up at least. Guess I'm just in that group that is always in the 5-15 % chance of "everything". ? Trying not to post until I'm in a better place to I have more positive things to say. I hate being a downer ! I'm pushing as much as I can, but I'll tell you, I wouldn't wish junctional arythmia on anyone🫤 Electrophysiologists wanted me to start on Flaicenide, but when I read up on it, I have serious questions about this drug before taking it . I'll be seeing my regular cardiologist, Dr Rigolin and electrophysiologists, Dr Kim at Bluhm Cardiovascular Institute Chicago on Tuesday the 20th. Have list of questions and hope to get this under control. My kids can't take much more either at this point , do really trying to stay out of ER and hospital. There's risk of infection also, which is extremely high for me on this biologic injection. 
I just love you all so much and wish you all well and hope to have a great update soon 👍💗

Kimberly Eisenhut  I'm back in the hospital at Northwestern, Chicago tonight. Had some more testing today, pericarditis is worse after being taken off Prednisone and on ibuprofen and colchicine only because I have to be off Prednisone for 3 days to do the biologic trial drug here at Northwestern. They told me it'd be a very painful few days or week and boy they were not kidding. Gave me oxycodone yesterday and today plus Tylenol. Tomorrow will be my first injection of the trial biologic. I'm nervous, but need this inflammation and fluid to be gone so I can get back to healing from surgery and on with my life. There's quite a bit of testing, trips downtown and visits over the next 6 months to a year, but if at any time I want out of the trial I can just switch to the biologic injection that's been approved for past few years. This new one is by the same company but they've come up with an improved version. I sure hope so 🙏👍 Then also have to hope my sinus rhythm comes back and I get out of junctional rhythm. It's so uncomfortable, but according to electrophysiologists it's not dangerous. We would have to do something to try to fix it in a couple months if my sinus node doesn't "wake up", but for now need the pericardium to get better and see if that fixes the problem before moving forward with any intervention for that part .
Getting to keep revisiting same cardiac nurses and techs, not something you'd wish for, but at least I know most of them now. For such an amazingly large facility here at Bluhm Cardiovascular Institute, I know and am known by WAY Too Many Drs, PAs, nurses, phlebotomists, specialists and today a couple of my nurses from after surgery came by to see me. Literally been on 3 different cardiac floors here and several "wings" of each floor. My amazing pericardia cardiologist, Dr Al Kazaz got me into a room quickly today and didn't have to go through the ER, which was quite a an undertaking believe me. This place is packed today! I'm so glad I ended up on the 12th floor again where I was in step down , they are a great group of people. Funny how different floors of same hospital can be run so differently. I'll try to update when I can. Thank you for asking, it means a lot💖

Jeffrey Sweatlock  Best wishes that it all goes according to the plan now and that you continue to improve. You have an amazing team watching over you with fantastic resources at their disposal. Despite the pain, you seem in better spirits than you were a few days ago…

Kimberly Eisenhut  Jeffrey, I see you're new here 👍 If you're thinking of coming out to Northwestern Bluhm Cardiovascular Institute the is for surgery , you'd be in good hands. My tricuspid repair, even after all these complications since I've been home (no complications during hospital stay after surgery), my repair is holding strong. It was massive regurgitation before surgery and now it's trivial. 
Keep us posted on you're journey and wish you a wonderful Holiday Season❤️

Fidel Martínez Ruiz  I'm expecting you get better and hope doctors find the way to improve your pericardium. The faillure in the sinus rhythm I guess can be solved, I've two friends that are now well and having previous serious rhythm disturbances. Hoping you feel better in a short time.

Kimberly Eisenhut  Me too and fix the pericaditis. In to much pain today . Worst pain I've ever had in my life .
Praying for God to please ease the pain 

Pamela Gregory  Kimberly, I am sending prayers to help ease your pain. I am so sorry you are having such a hard time. I hope they can figure this out and get you some relief very soon

Kimberly Eisenhut  Going back inpatient tomorrow. Too much pain now that I'm off Prednisone and just on ibuprofin high dose 800 mg 3x , colchicine 2x and now .25 oxy tonight so I can make it to tomorrow afternoon when I go downtown Northwestern and get more tests and a room. Guess first injection of new biologic will be wed. Was told pain would be very bad, but not prepared for this. Bonis running low, so Dr said to eat salty stuff. Going to be a long night with pain at 9!

Kimberly Eisenhut  Aw, thank you Richard for making me smile today. Very rough night. I am glad you can take your baby out for a spin today. Enjoy

Kimberly Eisenhut  Ruth joy, thank you. I haven't drank alcohol in years, no caffeine in 20 years , a little dark chocolate once a day . Can't walk because my HR goes above 100 when I just basically stand up now and supposed to keep it under 100 with pericarditis. I'd love to go for a walk , maybe I'll try walking super slow with my daughter just a few houses down . I just don't want to end up in ER again . Resting hr totally relaxed in rocking chair is in 80s. I just read that Prednisone and colchicine can affect electrolytes as well as so many other things. They have me taking calcium and D3 and multivitamin. Electrolytes affect heart rhythm also, do mentioned this to Dr through MyChart. I asked about monitoring other bloodwork than just the inflammation markers like he's been doing and he said not necessary, but I very much disagree. It's so hard doing all of this. Found out they saw the irregular rhythms inpatient last week but did not say anything to me about it even after me saying I felt my heart beating strange and uncomfortable. Guess I just have to live with it for now and hope for the best, and that my sinus node starts working properly again . Kate has been emailing me and it helps. If anyone else dealt with pericarditis that was not responding well and has had flare ups, please reach out, as I could really use some support and know it will pass.

Kimberly Eisenhut  Thank you so much! I couldn't sleep and having some left sided chest pain again..Thinking about my cardiac MRI and labs. 

Janet Gaffney  Totally understand. Anxiety over med access or worry over med bills is awful, will make that pain so much worse. 

You seem like such a nice person.  I don’t want you to worry over this.    

Kate Watson  Hi Kimberly, I'm so sorry that I didn't see this message until now. I have some issue seeing new messages on here. I think maybe just email me if you'd like and I can give you my phone number: kategobey@gmail.com  Thinking of you! 

Kimberly Eisenhut  Thank you Suzette. Chest pain is better, but headaches are coming back. I am now taking high dose ibuprofen and cochlisine for pericarditis and will go downtown Northwestern Bluhm Cardiovascular Institute tomorrow for another echo , cardiac MRI, bloodwork and visit with cardiologist and pericardia clinic for treatment. Just so tired, disheartened and stressed. I know you've been through so much and are still having issues also. How do you get up every day, function at all and try to find some happiness? It's getting very hard. I'm trying, but feel every time I get optimistic, I get something else thrown at me.
Sorry , but woke up with severe headache and I shouldn't have one taking 600 mg ibuprofen 3x a day!

Richard Munson  Ibuprofen or advil is for sure a pain killer but it ruined my stomach lining after a lengthy bout of knee pain a few years back. After heart surgery i stuck with Tylenol to avoid the digestive issues.

Kimberly Eisenhut  The high dose ibuprofen is 1st line treatment along with the cochlisine for pericarditis, so I have to take it. They gave me a PPI to help protect my stomach,hope it works. I know PPIs have their own issues as all meds do! I guess now the team downtown is saying they can't get me in for the echo and cardiac MRI tomorrow, I'm so upset, as it's a two hour drive and that means another long day very soon I would think. I'll still see the Drs partner as she's also booked, and get labs.

Suzette Schear  Here is the duck library it’s actually on the map you give and take a duck. The day after I fell bruised knee I wanted to see it so I just walked to it

Suzette Schear  There wasnt a lot of ducks in it but I wanted to see it I heard about from instagram too. Hope this made you smile

Richard Munson  Interesting library. Especially your first misspelling of it on your first post, which gave me a much needed chuckle today after my shadow seizure episode. Not sure how enticing nyc will be in the coming months and years, to visit or work. I for one give it a wide  berth and in years past we enjoyed a yearly visit on the train. A show, or museum, a nice restaurant ( manny wolfs i loved). But not at the expense of my life. I hope the great hospitals there will not suffer or move out, but i expect in time they will. 

Suzette Schear  I like the city but after 4 years working there , it’s lost its luster but I like what I do and my landlord likes to get paid.  Glad you chuckled I hope I fixed it.  We go to museums and plays.  I like my new apartment it gives me a true balance. 

Suzette Schear  I don’t know Kimberly.  I’m happy I’m here, but it’s tough fighting all the time.  I get tired.  I try to be grateful, but not always successful. Especially when I get heart palpitations, have heart doming and more regurgitation.  I still work full time going in out of nyc.  It’s hard, but I need to support myself.  I can honestly just give up but I just working on getting back to basics and trying to enjoy the things I like to do.  I was going to give the ocean back all the shells I have collected over the years.  I ended up using them on a full length mirror.  I know you like crafting what about art journals when I’m at my worst they helped the most . I also when moving did not get cable hookup.  It’s so weird but it has helped me going back to reading I’m also painting again.  I watch tv classics like honeymooners and other simple shows. My knees hurt from constantly falling and are pretty beat up at the moment but I got it down to a science so no pants were damaged.  I walk anyway even though it hurts and found a duck library.  I just wished you get a break, it appears non stop for you.   I do have moments and I miss my Tiger who was my fur baby.  I had this post but the word duck was auto changed to a rhyming word that got Richard laughing.  I deleted the other post . 

Fidel Martínez Ruiz  I like NYC, museums, parks, incredible mixture of people from all over the world, the jazz, Central Park, the hotels. I've been four times, twice for work and three times for pleasure spending a wonderful time. I remember one hotel where there were many people from different states from the American heartland. Amazing. I wish that city all the best, and I'm sure it will happen .

Richard Munson  I think i went to this library once but did not enter the short doorway because they kept yelling duck.

Suzette Schear  Richard that was really funny I’m on a train and started giggling .  I’m going to have to use that next time

Kimberly Eisenhut 
David,
I'm staying with my daughter and she will be taking me to Northwestern downtown Chicago again for echo, cardiac MRI , bloodwork and apt with Dr and pericardia clinic director to start that. No pain now, just strange grating type feeling when I take deep breaths. Dr said it's from fluid and inflammation. 

Kimberly Eisenhut  Well, stopped feeling that grating, now just a lot of flubbing around I feel with my heart. I have a 6 lead cardia mobile device and it shows normal sinus rhythm. Drs said if it ever shows anything else, let them know and go to ER. Slept mostly on right ride last night, which was nice since I've been struggling so much with getting comfortable at night. Lots of pillows involved, but figuring it out . My 14 year old granddaughter is now worried about her heart. We're trying to reassure her she's fine. Must be all the talk of my stuff and seeing me in hospital .

Janet Gaffney  Nice to have that device. Maddening, though. 
Poor kid, I think that’s a natural reaction, though.