Kimberly's Guestbook

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. 

Kimberly Eisenhut  I came home this afternoon. I had my own room, but guy across hall from me was coughing up a lung and had all the serious alerts on the glass sliding door that was constantly left open . Has to be pretty serious for them to have to suit up every time going in! Noticed it yesterday, not first day there, but asked nurses and staff to wear a mask as soon as I realized it. Then before I left o called patient relations and left lady in charge, since I had to talk to her yesterday about my meds being so late and them getting them wrong several times, left her message today that I do not appreciate being put right on top of someone with serious respiratory disease and if I get ill from it, I'll be contacting everyone on charge. I asked why I'd be out there when they know if I were to contract something like that it would likely end my life. I'm going through enough! I actually kind of joked yesterday morning with the nurse saying what is all that on his door? Is he in isolation? She chuckled like it was a joke, it want! If I'm ever admitted there again, I'm telling them I will only stay on cardiac floor and in my own room, no messing around any more. I'm so done with these hospitals messing the simplest things up and hate to think what would happen if I wasn't able to notice and advocate myself, it's so scary to think the mistakes that are made😥 I'll be leaving a review as soon as I am feeling up to it and calm down from my three day nightmare . Took me two hours to figure out my meds and get them in order , sheesh! 

Richard Munson  They say the easiest way to pick up an infection is in the hospital. Germ factories. When i have my upcoming prostate biopsy they include 2 antibiotics by iv. 

Kimberly Eisenhut  Janet, I was, my surgery was Sept 26th and I was home on Oct . 2nd. I've been in ER twice since then for severe pain and headaches, and now admitted on Thursday when was having severe pain just when breathing on left side , like my heart was being crushed . They said it's pericarditis so needed to stay and be observed and out on meds. Severe pain is gone, but now have to fix this as well as mild plural effusion and bottom of left lung they collapsed for surgery is not fully inflated at bottom. Hoping it all heals and I can start moving forward again by December for cardiac rehab. Ordered to only do light walks and no kind of actually exercise or pt until it's cleared up for the most part which will take at least a month. Then stay on cochlisine for 3 months to make sure it is gone and taper off high doses of ibuprofen for 4 weeks. I'll have to ask how they can be certain it's gone. Probably inflammation markers and another echo I guess. Not what I was going for, but the echo I had in ER showed my tricuspid repair was still working and no murmur and still trivial regurgitation.

Melinda Donahue  Oh Kimberly - so sorry you are going through all this - I have not been on this site for a while - I felt like I had to get my emotions together!   I am so happy your valve is fine and sincerely hope you are on your way to a full and totally recovery.

Kimberly Eisenhut  I'm also worried about my Medicaid being taken away because of what's going on. If I lose it next month , don't know how I'll survive. 

Janet Gaffney  I’m so sorry to hear this. 

You must rest.

Keep everything - all documents.
Comply  with everything the doctors tell you. 

I can help you get Medicaid answers. 
Let me get home first and have a week to be a zombie - I do not think putting our numbers up here publicly is good. (If you’re interested at all). Maybe we can get NW medicine to help us connect. Or maybe you know how. 
I’m not trying to insert myself into your life. Feel free to tell me to ‘buzz off’. I’d like to help if you’re interested. 
(Hubby is a retired lawyer.) 

Kimberly Eisenhut  Janet, yes please ! I think there's a way to share info but forgot how. We can exchange emails and then I can give you my number. It would be amazing to know I have help getting care if this horrible thing, cutting everyone's, medicaid actually happens!❤️ I'll ask Adam how we can communicate privately, I just can't remember right now . I've done it a few times, just my mind acting up today.🤪

Janet Gaffney  Kimberly, I’m just home. Give me a couple of days and we’ll figure this out. 
I don’t want you to think I forgot you. 

Kimberly Eisenhut  I can't believe how well you're doing! 
Only if the government stays shut down will I lose my Medicaid I believe. My renewal isn't until next July. I've just read that everyone's medicaid will stop last day of this month just like link card food program stopped. I've worked my whole life since I was a teenager and spent many years as a single mother, over 15! If I need some help now, I don't see a problem with that. I truly hope and pray this does not happen, as so many will lose their lives including infants, children, elderly, chronically ill, handicapped. Or, just people like me, who are one income households, received a diagnosis of something unexpected and now is receiving help, possibly until I can qualify for Medicare in a few years. I have several other conditions I haven't talked about here because it's just heart valves so I try to just focus on that. Sorry for the long rant, but it's on my mind.

Kimberly Eisenhut  I've been having pain when sitting past two days also. Told cardiologist and surgical team. Waiting for response. Probably just say go to ER as always . Already had one trip to ER a week after being home, from chest pain, ambulance ride and everything! CT scan for blood clots, bloodwork and other tests showed all good then. Just so hard to know if it's serious or not. Took gabapentin and Tramadol last night. Woke up at 4am with pain up both sides of my neck and chest pain back. I am so frustrated and just not getting much help from Drs. PT said to take pain meds again, but I just feel I shouldn't have to be starting them again at this point.😢

Richard Munson  Only you know how bad it is. If you need to go to er then go. Pain meds as you know just cover up the pain , not cure it. 

Kimberly Eisenhut  I'm in hospital inpatient  at northwestern in McHenry Illinois, which is 5 minutes from home. Came the day before to ER for left sided chest pain that wouldn't resolve with my gabapentin or other pain med, had tests, elevated d dimer but pain resolved with other pain meds so sent home. I wanted an echo, but they said they don't do them in ER. Well yesterday found out, yes they can do in ER! My cardiologist downtown asked for them to do it and, low and behold , they had someone come in my ER room with an echo tech and did the echo! Sometimes I really hate ERs, it's so frustrating and they just don't figure out the root cause of something, just medicate and send home. It's nice to have 2 other Northwestern hospitals here because they can all see mychart and communicate with my cardiologist downtown Chicago where I had surgery. I was tempted to try to go downtown with my sister yesterday morning, but was in so much pain ended up going in and ambulance to closer hospital. Lucky because it took my wonderful cardiologist , Dr Vera Rigolin from Bluhm Cardiovascular Institute to talk to them for me to get the treatment I need. I had echocardiogram, ct of chest, many blood tests, x-rays. I guess it's pericarditis. Woke up with terrible pain when breathing,  just tiny breaths. Very painful and must have been coming on for about 5 days, since I was having pain whenever I took deeper breaths days ago with pain going up front of my neck. Giving me large dose ibuprofen and Colchicine. Pain is getting better today, but bp dropped to 86/54 in middle of the night. Back up to 97/65. This stinks😢 Please say a little prayer for me🙏❤️