Kimberly's Journal

Richard Munson  I know you are hurting hvs step girl but please be careful about your meds. I am sure you read about the side effects on this one. Thinking of you. 

Robert Miller  I am not familiar with Flaicenide and I don't know what your condition is that you are seeing an electrophysiologist and what he would do. In any case, you want to be careful with certain medicines. Some should not be taken over a long period of time as they attack organs. So even if they work, they might just be a temporary solution. Other medicines should not be taken if you have heart failure, low ejection rate or other health issue. 

Kimberly Eisenhut  I'm being very careful and will not start it unless I'm sure it's the right thing to do. At this point, I'm not at all. So not starting it . Thank you Richard for caring and looking into the medication like I'm sure you did. I don't understand why this EP is so intent on making me try it. How can she be sure I don't have sinus node disfunction? If every time I jump into sinus rhythm I tend to have these strange rhythms, isn't that he definition if disfunction? Maybe our nurse Mary can weigh in.
Robert, I have accelerated junctional arythmia since my first flare of pericarditis back in early November and have been going between sinus and junctional every since then . The pericarditis got so bad I had pericardial effusion and pleural effusion in my left lung. WA started on a trial drug, but got off because I flared before the 2nd injection and they didn't know if I'd get placebo for 2nd shot, so quickly got me on Rilonocept (Arcalyst) injections which I've now been injecting myself with for 10 weeks now. EP tried Metoprolol first, that did get me into Sinus rhythm more, but when in sinus rhythm I was having a lot of ectopic beats, and palpitations which were extremely uncomfortable and crazy so I stopped taking it . My case is so rare according to my EP, she's only had 1 other case similar and it was a child. They just are not giving me any other choices than Flecainide, cryoablation and after that if needed possible pacemaker. It's tricky though because I have meal allergies, my tricuspid valve is what was repaired so pacemaker cannot be placed in usual place. I'm trying to figure out if I can even find another EP with my insurance. I'm limited with Blue Cross community here, as the only major hospital that takes it is Northwestern . There are several Northwestern hospitals around me, but downtown Bluhm Cardiovascular Institute is supposed to be the best. Don't know what to do .

Kimberly Eisenhut  Thank you Deena, I have nor posted in a while. I have started on Metoprolol ER (extended release and it is helping a little get my heart back to sinus rhythm, at least it did for a couple of hours this morning and last night. The electrophysiologist is hoping with a little more time and either the Metoprolol or adding Flecainide will do the trick. I do not want to take the Flecainide because of the side effects I have read about. Metoprolol already has so many. I am almost off of the prednisone and finish tapering in about 10 days, then I have another two or more months before I am ok to do cardiac rehab. I am hoping the arrythmia is gone soon so I can walk more than 5-10 minutes too! I want to get my life back but told I have to be patient and let my heart heal from the pericarditis, as it takes a toll, especially when you have multiple flares back-to-back like I did. I gave myself my 5th injection of  Arcalyst (rilonacept) today. It has kept the pericarditis from coming back. It is a biologic that blocks the receptor for your body to signal inflammation like it does to the pericardium in pericarditis. It was used for other conditions before it was approved in 2021 for pericarditis. Before that, there was not much besides oral medications, which none worked for me. I am very grateful for my pericardium cardiac specialist Dr Al Kazaz for getting it approved so quickly, as it usually takes a couple of weeks with the insurance companies. They denied the first time, of course, but he managed to get it going for me in about 2 days after the denial! The maker Kiniksa sent me the first 3 as their "quick start" program, which was great also. The pain from pericarditis, pericardial effusion and pulmonary effusion was the worst ever! Would not wish it on anyone. So happy to be on the other side of that nightmare now, and so are my kids! Now to get to the finish line, which I am told may be about 6-12 months. We go step by step and if I need a pacemaker at some point, its fine. Sorry for the long post. Going back again downtown  Tuesday

Deena Z  What a journey, Kimberly.  The unknown of what will get you out of a “health hole”, as I call it, is so incredibly stressful.  From reading your update, it sounds  like things are finally getting better; and you have a path to recovery.  I get that the slow process makes it that much harder. You’re kids sound wonderful, which is a blessing.  Will say another prayer for you right now. ❤️

Peggy Peterson  So much love & prayers for you beautiful girl!! You could be my daughter or granddaughter. Prayers & positivity. Manifesting. You’ve come this far. You are a warrior princess. Fight on. ❤️❤️❤️

Kimberly Eisenhut  Thank you Richard, Peggy and Ana🫶 I am fighting and will keep fighting. I will try to update after I do my "loading " doses of Arcalyst on Friday. 
So many unbelievably tough, inspiring, loving, and just plain exceptional human beings here! I'm so proud to be part of this community. 

Pamela Gregory  Me too! Prayers for the new shots to work the way they are supposed to and give you relief. Hang in there Kimberly. You are an incredible woman in so many ways and stronger than you know. Sending much love

Rose Madura  Stay strong Kimberly! I'm so glad you posted. I have been praying for you and will continue to do so.  Merry Christmas! ❤️‍🩹

Kimberly Eisenhut  You're so kind John and Melinda ❤️  love you all so much for the encouragement and prayers/ thoughts😊🫶

I'm still in "junctional" rhythm almost always though, which hoping will start to straighten itself out since it's so uncomfortable and hard to function with. Tried Metropolol and it does seem to get it back and forth into sinus rhythm, but had to stop because it also causes some again and crazy ups and downs with pulse and palpitations . I'll try it again, but give the biologic injections a chance first. Tomorrow will be my "loading" dose of the Rilonacept (Arcalyst) 2 injections! Wish me luck mixing the meds and doing it correctly, I've never given myself an injection before, much less mixed one. These don't come ready to go, I have to take refrigerated active Arcalyst and mix with saline, it's a lengthy process . At least first time I'll have a virtual call with a nurse from company to guide me step by step . At this point after all I've been going through I feel like I'm the nurse to be honest😜

susan harris  i am so sorry to hear this. but you are soooooo strong, you can do this. have any friends w diabetes on insulin?  they inject themselves everyday and might be able to put you at more ease?  you will get through this!

Adam Pick  Hi Kim, Thanks for posting about this. Thanks to you and Ercana, we just learned there is a small intermittent programming issue with the Patient News Feed that is being worked on right now. We hope to have it resolved shortly. Thanks, Adam

Adam Pick  Hi Kim, Quick update. Our programming team just let me know that the issue was fixed.  Please let me know if you are continuing to experience issues. Thanks, Adam

Ana Brusso  Hi Kimberly, hope they will be able to figure out what’s ailing you. I keep you in my prayers every day. God bless you 🙏❤️

Deena Z  Hi Kimberly, if this trial is randomized, there are some patients that will get the placebo.   Did your doc confirm you are getting the actual biologic? Also- is there a sound reason the already well tested biologics for your condition are not 
getting offered to you?

Fidel Martínez Ruiz  I guess that if the trial is double blinded they maintain a treatment concealment. Then, I guess that Kimberly´s doctor will not inform the patients before the end of trial, after doing the post trial patients surveys, in order not to disturb the own patient oppinion about his/her body status. It´s a good idea, above all if the treatment shows to be effective, regardless Kim have taken either the biologic drug in trial or placebo.

Valerie Allen  I don’t really understand the 2/3 designation, if you don’t it is worth asking. 2 is generally the first time it is used on patients with the same issues, and 3 is for a larger set of patients which can be extrapolated. Anyway, prayers for discernment and resolution. 🙏

Rose Madura  Deena does have a valid point.  You want results, not a placebo.  I certainly would not rush into it.  I STILL think you should push Medicaid to offer a second opinion.  Be your own advocate.  Why do they want to keep paying for all these doctor visits and tests and not want to pay for another opinion that might actually offer a solution?  Have you called the insurance company to discuss?  

Richard Munson  No doubt stressful when dr. Is in the dark. Infection seems like the cause but crp does not say where. 

Rose Madura  Praying for you Kimberly. You've been through so much with your very eventful recovery. God, give Kimberly a breakthrough today!🙏❤️‍🩹

John Cook  I’m sending you good thoughts.  

EDIT: I misunderstood the difference between standard and high-sensitivity CRP tests.

Kimberly Eisenhut  Thank you all! Got two calls from Dr today talking about way forward. He said add 400 mg ibuprofen on top of other meds for a bit, but if I get any stomach/ intestinal pain, stop and tell him. It is a taper dose that goes along with tapering down the Prednisone . So for instance, tomorrow I'll take 35 mg Prednisone, instead of 40, add 400 mg ibuprofen 3x a day, and colchicine and the pantoprezole for my stomach, do that for 7 days, then go down 5 mg Prednisone and to 400 mg ibuprofen 2 x a day for 7 days, etc. But if my inflammatory markers don't go down below 5 and stay there, I'll have to do biologic 🥴Then said make decisions on which biologic I want to do if this doesn't work to clear up pericarditis. Either ARCALYST (rilonacept) which has been used for a couple years or newer version of same brand but newer formulation that's supposed to be better medication that is a trial (all visits, testing, injections and follow ups included in trial) with KPL 387. It's a lot to take in and decide on. 1st two weeks of trial would be 4 visits downtown and once every other week after that for like 6 months. Including all echos, bloodwork, any other tests needed during study . 
Oh, he also mentioned the heart rhythm issue and said I'll get a call from electrophysiology person Monday. He really doesn't want to even think about pacemaker because pacemaker wires run over the tricuspid and  could be a bad thing in my case. I think that's another reason he must have been sitting at home thinking about my case and called me back, to just try adding the ibuprofen, even though there's more risks with that too of bleeding, etc.  He wants to make sure we try everything else possible before jumping to biologic injections. I do remember my cardiologist though, Dr Rigolin from last 9 years, with this looking very concerned when he mentioned this route last week and that's when they took me off ibuprofin and stated Prednisone only instead of both. I just am so confused and nervous. Hard making these choices on my own, but in the end I guess that's all we can do right?
Please my sinus node, wake up! Please start working right again🙏
Thanks for letting me get these things out here, I don't know what I'd do without you all❤️

Kimberly Eisenhut  Need more interviews with specialists on this if Adam can get them with these Drs, it may help others like myself. I'm sure Dr Al-Kazaz or others at Northwestern may be interested in it also. Maybe Cleveland Clinic or others?

Suzette Schear  Kimberly sending prayers love and hugs I hope you find some kind of balance, it’s the not knowing what to do or how to help yourself, which is  The worst.  I  had specialist trying to figure out why I get 104.3 fevers why I got septic and now endocarditis which led to my heart condition.  Try to think of it day by day journey for now cause anxiety has a serious way of making things worse.   Your doctor sounds good and that he’s trying and maybe contact the Mayo Clinic they have good research on line.  I believe in God and will pray every night for you. 

Jeffrey Sweatlock  Kimberly, we can hear and feel the weight this inflammatory issue is having on you, especially after just getting your tricuspid valve repair. You have an excellent team at Northwestern to help guide you. Along with thoughts & prayers for your improvement, please remember that a positive attitude and even some laughter are proven good medicine. You may want to consider input from a rheumatologist if you have an underlying inflammatory / immune issue.  Also, I do hope you recover and do not require a pacemaker, but Abbott makes a leadless (wireless) system if you are a candidate. Of course, discuss with your doctors . Best wishes to you. 

Chris Germano  A blood test showing a reduction in inflammation has to be a good sign. I hope it continues to trend down. Best wishes for continued improvement.

Kimberly Eisenhut  Thank you Chris. Going tomorrow for more bloodwork and another EKG. Then next wed getting the zio patch heart monitor and another round of blood work. 

Marie Myers  Sorry, but I really don’t have much knowledge about pericarditis and its treatment. But the fact your inflammatory markers are decreasing is a good sign. Best things you can do are to eat nourishing foods, avoid processed foods, artificial sweeteners , fried food, and get some good walking in if you are able to do so.  I do remember early in my recovery how disturbing the arrhythmias felt. Hope everything is headed in the right direction!

Kimberly Eisenhut  Trying to walk a bit, just have to keep hr below 100, so difficult right now. Not risking things getting worse again. It's getting hard sitting around so much, but when I try to do any little thing like maybe dust a bit or change sheets it gets hr up too much🥴 Dr said to eat beef once a day for a week because my iron was at 10 last week. I did eat lean beef for 5 days, but it's too inflammatory, so doing chicken breast, eggs, spinach, avocado toast , blueberries, lentil soup. I'm trying👍

Kimberly Eisenhut  I'm telling you all these stays inpatient at hospitals has me really upset at the food they are giving heart patients! Any patient for that matter! It's terrible, processed, filled with tons of preservatives, dyes, not freshly made, no good nutritional value at all. Many things are just reheated and remade from lunch to dinner and most things were not even edible. How can patients heal and get better quicker in hospital if they're not given the proper nutrition? I mean quality fresh food is not that hard to do. So much gets thrown out because patients don't eat it because it's horrible, so how about just spending the budget on better quality so they can actually eat it and then less waste and healthier patients ! Even nurses, techs and food service themselves say they don't eat it and apologize because they know. Sorry for the rant, but some of you must know what I'm talking about.

Maureen Hoganson  Yes! You are so right about the hospital food! They knew that I had allergies, so was extremely limited in what I could eat b/c so much was processed (and barely ate while in the hospital) -- so brought healthy snacks I knew I could get me by until I got home! Amazing that they can't just give you good healthy simple foods that help with the healing process. Don't get me started on the unhealthy foods!!! During my previous surgery in 2013, my husband I and talked about starting a food service for patients (of course, before all of the delivery services started up...) I am in agreement with you -- and definitely something that needs to be addressed!!!

Suzette Schear  You’re not ranting your communicating important facts and it’s good to let it out.  Especially here, I was happy to see that someone else had knowledge of what you’re going through.  Hopefully the zio will give more info.  I was pre diabetic  and they  were okay with giving me açaí bowls.  Doesn’t make sense.     

Richard Munson  Hospital food has always been not the best. If it was great you would want to stay there. Can’t imagine anyone wanting to stay in the hospital. I guess they are out there someplace. Just decided to ask nancy to cook me up some hospital food. Not.

Melinda Donahue  Hi Kimberly. Thinking of you and praying you starting gaining momentum on feeling better !  You are in my thoughts. 

Aaron Bader  So sorry you're having to deal with all that; I can't begin to imagine how hard it's been. I hope so much that things ease up for you quickly so that you're able to just focus on recovery. Thinking of you and sending along care and positivity.

David Buchanan  Had some ectopic beats and SVT in the past and it was scary, but this surgery I have had none. 

I really hope this resolves for you soon!

Pamela Gregory  Hang in there Kimberly. Glad you are having tests and hoping you get some answers that make sense today

Suzette Schear  Kimberly hang in there some doc or some test is bound to find a way to steady your heart. When it starts happening and at these scary point, are you able to calm your mind and breathe so being overwhelming and anxious doesn't make it worse. Glad you're with your daughter and not alone. I am so sorry you have this condition. Know your are loved and people care.

Fidel Martínez Ruiz  Hang in Kimberly. Perhaps, you can try walking half an hour calmly in plain path better in some park and doing this every day. For me it has been useful in some occassion. We are thinking in you and sending you the best wishes for the pericarditis being solved soon.

Maureen Hoganson  Did you say that you were anemic? I became anemic with both of my open heart surgeries (and had to have a blood transfusion with the Ross Procedure) -- and that tends to make my heart go off rhythm as well. It doesn't happen as often now (at 5 months out) -- but still feel early beats on occasion -- so will ask about that, too. Pray your tests give you some answers!

Mary Monagle  I have recurrent pericarditis and would go into rapid high aFib. For the past year, I've been medicated with Arcalyst that I inject weekly. I feel great now and no longer have those episodes.

Kimberly Eisenhut  Thank you Mary! I've been told if this month of colchicine Prednisone don't clear it up , I'll need to do a biologic injection also. I'd love to just skip to that part. Did you have to be on other meds first before they'd offer you biologics?

John Cook  I don’t know if it’s because they are expensive or what but they always seem to make you wait before they’ll try a biologic.

i had to do 7 months of just methotrexate before they’d try me on Humira for my arthritis. Now I’ve got to wait another 3 - 6 months to know if Humira is doing enough for me.

Richard Munson  Its an opioid pain medication i am reading. Some interesting potential side effects you may want to read about. 

Kimberly Eisenhut  Yep, maybe a no for me . Thank you for responding . My iron was down from 147 on Oct 17th to 10 this morning! They're telling me not from Internal bleeding but I'm not convinced . They said could be from pericarditis . Also attribute my irregular EKGs to pericarditis too. Just had another echo . I'm currently in a "outpatient observation" room. Then will be transferred to inpatient tomorrow if I'm staying, which I said I am until they figure this out and get me on right path and know I'll do ok on Prednisone 40 mg for a while then taper off and just take colchicine for 6 months. What's funny is I've had to ask for my iron supplement 5 times today and still don't have it! I usually take in morning before breakfast. Dr mentioned iron infusion this morning, but then decided against it later, well I didn't know this and then why not at least be sure I got some extra iron, hello!? My goodness ! Done going to ER for a while, too much for me and my kids thank you! Sorry for the rant, bit one hour of sleep and just so done with some of this.

Kate Watson  I have a weird opposite reaction to tramadol, like it keeps me awake. It’s been great for pain for me at times. But it can affect heart rhythms so not sure they’d want to give it to you with abnormal EKGs. 

Richard Munson  We all have different reactions to things as we are all different. I get nasty red itchy welts on my chest from from the stick on patches they hook wires to in the O.R. Never did in years past. New kind of glue? So this time they used baby patches but here i am 2 days later itching 3 red square welts on my chest. 

Suzette Schear  I’m so grateful you’re staying there.  I stayed in an outpatient room.  It was easier for them to get to the bottom of things.  Hoping you get a direction and the correct meds to be on. 

Kimberly Eisenhut  We have a plan in place and I'll be going home tomorrow from what I'm told. Taken off ibuprofin and put on 40 mg Prednisone once a day for another week, if my hr-CRP drops back down to normal, below 5. It was 140s on Wed. today it was 84, hoping it'll be lower tomorrow and so on. Then taper off Prednisone for few weeks and hope no more flare ups of inflammation and pericarditis pain. Have to keep taking the pantoprezole to protect my stomach also. They really hate these meds, but only thing that works along with the colchicine for acute pericarditis that keeps flaring up with only colchicine. The colchicine you take for about 3-6 months. Then there's another plan if that doesn't work . There's a new biologic injection and one that's been around for like two years that work really well, made by same company and the trial one is supposed to be better with fewer side affects. Hoping to not have to go there though. Hoping my body relaxes and my heart stops being so mad at me.
No more hospitals for a while please 🙏 Oh, forgot, my iron is so low that Dr ordered me to eat beef for a meal once a day for a week then get it checked again. They would have given me iron infusion my hemoglobin was 7 or below, bit it was 8.9 this morning. Weekly bloodwork for a while too. Think I'm covered👍
 Wishing everyone a wonderful weekend ❤️

Aaron Bader  You're a warrior for yourself in every way. Thinking of you and standing with you to get well and onward in your recovery.

Kimberly Eisenhut  Thank you everyone. I came for an apt early this morning with my long time cardiologist Dr Vera Rigolin and my pericardia Dr stopped in also. They both agreed after seeing my pain again today, especially when I laid down for the EKG, that I should stay here at least a few days until they can get my pericarditis on track and get my inflammation down. I've been following their exact instructions, but just keeps acting up . Was told if the inflammation doesn't go down and stay down by end of my stay, they will most likely get me in this trial for a biologic they've had great success with for this. Injections every other week. I'll try to update tomorrow.
Kate has been my email buddy now, which I'm so grateful for, thank you Kate😊🫶

Rose Madura  Glad they are keeping you.  Inflammation issues are very common. I had them and it took 4 readmissions before it all got sorted out.  Hang in there Kimberly. 

Melinda Donahue  Kimberly did you have a repair or replacement and does this have anything to do with your metal allergy?

Kimberly Eisenhut  I didn't think to ask about possible allergy, but it is a titanium Medtronic contour ring repair and the clips put in during surgery were titanium, so they said it's not that. Saying it could take months to a year or two to settle down and may need biologic injections. Also need iron infusion today because m they want my hemoglobin up if they have to use a biologic. It's a brand new one and had their first person on it recently, I think maybe today. We will see. 

Richard Munson  I hope you give that a lot of thought before you take it. I know you are in panic mode step girl but experimental drugs are just that, experimental. Hopefully they are not missing something obvious that is staring them in the face. Are you positive you are not allergic to titanium also? A year or 2 to settle down? Granted, i am no doctor, but a year or two seems like an awfully long time for anything to settle down. My question: if this drug is new and not used by that many patients, how can they say it might take a year or two to settle down. Just askin. 

Richard Munson  Pure titanium does not contain nickel but some titanium alloys do from what i am reading. One assumes medical devices to be pure but who knows in this day and age and especially if imported from china. 

Deena Z  Richard and Melinda made some astute points.  It’s pretty important to get to root cause, as the docs are now offering a  trial drug with a universe of one patient that they have used it on. (Granted not an easy question, but I wouldn’t let them off the hook.) Here is the number for your Medtronic ring.  Technical Product Support: 800-646-4633, option 1 (24/7).
I dont know how little of an exposure to nickel will set your allergy off, but if it can be minute amounts, you might inquire about the factory where your ring is made.  - that is, are other metals also manufactured there?  Prayer your way, Gladiator Kimberly. ♥️

Rose Madura  Great advise given here Kimberly.  Please keep us posted and I agree - don't just take an experimental drug without finding the root cause.

Melinda Donahue  Instead of the trial medication can’t you be prescribed the same meds as the hockey player (name?) in Adam’ video 

Fidel Martínez Ruiz  Regarding titanium, it´s very rare for an allergy to appear. It´s advisable to keep the traceability of the ring as Deena says, but seems unlikely.

Ana Brusso  Dear Kimberly, I keep praying for your recovery every day. You are going to get better soon. 🙏❤️‍🩹

Adam Pick  Sure thing... Were you aware of the Henrik's story? He's the former NHL goalie of the NY Rangers who underwent open heart surgery that led to pericarditis. You might want to check this out...  https://www.youtube.com/watch?v=yKzmNOmgF8k

Patricia Miller  This is an excellent movie!  Great suggestion Adam.  I found it very humbling. He still wanted to continue playing ice hockey and worked so hard w/ his recovery from OHS.  I did not know I had the same surgeon as him till I saw the Dr. Roselli interview towards the end of the movie.   
I had pericarditis after my mitral valve surgery.  (not at Cleveland Clinic).  I tolerated Colchicine well and my CRP (inflammatory marker) returned to nml and my chest pain gradually resolved.  My pain was on the mild side.  Hurt when leaning over.  Most have pain when supine.   I was put on a steroid pulse, but my new cardiologist at the time recommended staying the course w/ Colchicine.  I could not take ibuprophen bc of decreased EF.  Tylenol helped.  Steroids can prolong or cause rebound if I remember correctly.  My first cardiologist was only going to treat me for a few wks w/ the Colchicine.  I was transitioning to new cardiologist at the time and she said standard was 12 wks of Colchicine so continued on for 12 wk course.  She paused my cardiac rehab for a couple wks.  I did not have pericarditis after my second OHS (David procedure- valve sparing aortic aneurysm repair), but did have mod-large pericardial effusion for several months.  Ironically it resolved after brief Colchicine dosing post cardiac ablation.  I continued to work through my pericarditis issues but was further out from surgery than you Kimberly.   I learned that there are people that experience pericarditis unrelated to heart surgery.  Hang in there.  It's a bump in the road, but you are strong and driven.   Hopefully there are more and more good days that replace the bummer days.  

Kimberly Eisenhut  Patricia , I'm back inpatient at Northwestern in Chicago and the pericardia specialist just upped my dose of Prednisone to 40 mg and still take ng 600 mg ibuprofen 3 x a day and the PPI drug for stomach and colchicine 2 x a day! . I'm very worried about the high dose of Prednisone and Ibuprofen. You only took colchicine? They build me protocol is colchicine and high dose ibuprofin

Suzette Schear  Sometimes it’s just best to go even if there is a slight question rather see you safe and sometime honestly it’s better to be there all testing and stuff gets done rather than to keep driving from one doc to another.  Hope you have a better morning sending love n hugs

Pamela Gregory  You are having such a difficult time. I kind of agree with Suzette, don't mess around if this doesn't feel right. At this point you know what real pain is and it does't seem right to me that it is getting worse. At night of coarse, everything is magnified, but go if you are concerned. Sending love and prayers

Richard Munson  I second the second opinion opinion. Rose has yet to agree but its coming. She may be shoveling snow. 

Kimberly Eisenhut  I'm in. ER at SSM in Janesville WI. They don't even have cardiologists here. My CRP is up pretty high at 42, was much lower last week. Probably should have stayed in Illinois , my daughter wanted to help me though. Dr here is communicating with Dr Al-Kazaz the pericardia clinic Dr.at Bluhm Cardiovascular Institute. I'm kind of scared

Kimberly Eisenhut  Added Prednisone to other meds for a few weeks and then taper ibuprofen and Prednisone when numbers come down. Going downtown in morning with my daughter and son again. I almost want to just stay there until this is under control . Please, anyone who is or helas dealt with pericarditis, please reach out so we can talk. I really need some input and support with this. Very alone right now . 
Adam, can you please help me find some people here who've dealt with this after surgery?
Thank you 

Kimberly Eisenhut  Specialist said I'd have to be put on this new study biologic they're having success with, but it can take two years to get better!

Deena Z  Kimberly, i would talk to Dr Al-Kazzz directly, if you have not already.  It may help decrease your stress.

Suzette Schear  Kimberly sounds like they are getting the numbers down this is good agree with Deena speak to that doctor .  Don’t go home until you are stable physically and mentally with understanding what going on I would call you but I don’t have your number.  You did right thing 

Kimberly Eisenhut  I'm home and Dr Al- Kazaz called my phone himself while I was in hospital out here in WI. On Prednisone 20 mg also now, then taper off both that and ibuprofen for next month or two . Man, this is a lot! He also spoke to Dr there. I'm seeing my cardiologist downtown Chicago tomorrow and he's going to try to stop in during my apt too. Gerring even more bloodwork, and then every week after that. I just got an email from our friend Kate! She's been so wonderful and we are going to be communicating more now . Thank you everyone , love you all so much🫶

Rose Madura  Praying for you Kimberly.  It wouldn't hurt to get a 2nd opinion for peace of mind, if nothing else.

Kimberly Eisenhut  I don't have other choices for hospitals, only Northwestern is in network out here for me. I don't have Medicare as I'm only 60.

Kimberly Eisenhut  Oh, and you'll see a lot of "copycats" on Etsy, but I'm one of the few original shops selling stamped lucky penny keychains since 2015. It seems every new idea I come up with is copied,even my wedding penny I came up with . "Something old, something new, something borrowed, something blue and a lucky penny for your shoe" I made a cute card to go with it and add the keyring and split ring for attaching later after wedding to keep as a keepsake on your keychain. I guess that's just the way it goes. I've also had brides sew them into their garter or bouquet 🫶💐 I just love being crafty and making small affordable gifts anyone can afford, that make a lasting impression. Also, that will be carried everywhere, not thrown in a drawer or forgotten. Just proud of my little shop😊 
A little chest pain last night and today from pericaditis, but hoping it goes away soon. Findings from cardiac MRI said acute and pericardia Dr said we have a long road ahead and keep hr below 100. Easier said than done , but I'm trying 👍
Hope everyone has a good evening; sending big hugs and love to anyone who needs it🫂❤️

Suzette Schear  I’m so glad your back to your craft I’ve embellished a mirror with shell just having a hard time making a seahorse out of shells.  All you can do is try and keep moving forward as you know so well. Hugs back to you

Kimberly Eisenhut  I love it! Did you collect the shells yourself? I have a large mirror I may just do this with. I love the ocean🫶

Suzette Schear  All the shells i collected except the starfish on the top and the two resin seahorses I bought.  I created a my own seahorse but it was sad looking .  Mirror became heavy had to put back on it.  Love to see it if you do it was very relaxing to do

Kimberly Eisenhut  I love the process though of making something out of nothing like this. It takes a lot of hot or miss, but that's half the fun😊🫶 I actually like the first one, very creative!

Jyll Welte  I’ve had fluid backing up into my lungs too with pleural effusion showing up in my CTs & x-rays.  I had never realized that my chronic runny nose, throat congestion & coughing was all connected to the fluid in my lungs due to the Mitral leak. I can definitely tell when I’m overdoing it. It’s like somebody turned on a faucet. It makes sense now, but it took a lot of googling!!!

Kimberly Eisenhut  I'm so sorry about your new problems with your heart Jyll. I just read your story and I'm in awe of how strong you must be💪
You are the definition of a "heart warrior"!
Hopefully Adam can do some interviews with, maybe not surgeons, but cardiac specialists and pericardia Drs who are better equipped to answer these types of questions. I spoke to Dr Malaisrie the other day via telehealth and when I asked about these types of things and his take and opinion on treatments etc., he told me that is not his area and to direct all questions and such about pericarditis and pleural effusion to Cardiologist and Pericardia Clinic . So that's what I'm doing now . Surgeon and his team are out of the rest of my journey now. I do think he gets some updates as to my new condition though. 

Kimberly Eisenhut  Who is your Cardiologist at Northwestern? Mine is Dr Vera Rigolin, you'd love her. You should see of there is a specialty your cardiologist can refer you to in order to help you now with the effusion at Northwestern. Don't wait , see what you can do now so when you get the surgery your lungs will be in better shape. Sorry if you've already done this, I'm just trying to think of possibilities that may help. I'm pretty new to that after affects of heart surgery.
Sending gentle hugs and lots of love tonight🫂❤️🫶
Message through MyChart or call them and ask for a call back from your team, they respond pretty quickly . Never be worried about "bothering" them or being pushy. You have to advocate for yourself and never feel you're being a burden.

Richard Munson  Just be happy it was discovered because you spoke up. Its a potential side affect of open heart surgery i read about on this site. Prayers on the way from your hvs step dad. One step back, 2 forward. 

Kimberly Eisenhut  Yes Richard, I am glad I advocate for myself. I sometimes wonder what would happen if we did not. Thank you for your prayers my wonderful hvs step dad🫂❤️ I will be watching my BP closely also, as it dipped down to 86/58 last night. Please keep me posted on how you are doing and any test results you get.

Deena Z  Not the (temporary) outcome you want after OHS.  Totally get that.  The one upside is that I’d rather be in the hospital than at home in pain.  Ask a ton of questions  and let them take care of you. 

Rose Madura  I'm glad you are getting the care you need. I experienced this after OHS but didn't have pain like you did.  By BP dropped, I went into Afib. I needed to have surgery again to put in a pericardial window.  This too shall pass.  Take care.  🙏❤️‍🩹

Kimberly Eisenhut  Thank you Deena and Rose. I'm so grateful to have all of my heart valve family here that understand the ups and downs. Truly love you all🫶

Aaron Bader  Thinking of you and grateful you are your own best advocate. Something felt wrong and you said so. You will beat back this bump in the road, I have no doubt. In the meantime, those hugs will keep coming your way.

Richard Munson  I read someplace that up to 40% of ohs patients have this. In varying degrees i assume. You are in the right place. 

Ernie Keen  Been there, done that. Pericarditis sucks. Yes, it's frustrating having setbacks like that. Recovery from heart surgery was weird, because it wasn't linear. You don't just start healing and it gets better EVERY day. It's a roller coaster where you have good days and bad days, but there are fewer bad days as you recover.  Good luck.

J Alexander Lassally  Younger patients have a more active immune system - ergo the pericarditis. Had it, too. Colchicine should work wonders. 

J Alexander Lassally  Richard - your immune system is like an Oldsmobile battery in -40 northern Maine in January... (just kidding, of course!)

Patricia Miller  I had pericarditis after my first OHS.  Mitral valve repair.  My symptoms were dismissed, but also not as pronounced as yours Kimberly.  CRP and symptoms responded well to Colchicine and a steroid pulse.  No trouble tolerating it.  Hope you are feeling better soon.  

Pamela Gregory  I had it too but had to have a tube reinserted to drain it. Spent another week in the hospital shortly after I was discharged. Hopefully the Colchicine will work for you

Kimberly Eisenhut  Seems to be helping, I hope I don't end up back here, I love the downtown Northwestern, but here in the suburbs, not so good😕 it's just not run well at all here. Mostly alone here too, so no one to help me out when nurses don't respond or get right meds etc. Going home this afternoon, so praying to please get better and not come back here, please!!! 🙏🙏🙏

Kimberly Eisenhut  Well, home to stay with mom that is. Gave my youngest son a few days off to go hang out in WI with his sister and make some money this weekend. He needed a break from all this and worrying about me. He will be back at my mom's tomorrow to help if needed. My mother does not help much and is very non involved or communicative at all with Drs, when I go to hospital , medications, what my diagnosis are, ect. I just am there so someone else is around, in case. My son stays with me most of the time, sleeps on her couch, especially when she goes to her pt job at home goods . He doesn't like me to be alone, which I appreciate, especially since I've had my share of trips to ER and now this. 

Suzette Schear  Oh Kimberly, you’re back in the hospital but glad it’s found and they are working on you to get you back home.  Your journey has been tough sending prayers and love your way.  Must have been really scary but so glad you called sorry you have to go through this sincerely . 

Kate Watson  Just seeing this Kimberly, and I'm sorry to hear it. I've had pericarditis before and it's very painful. You may recall I've had my many setbacks too and it is frustrating. Just remember this journey is non-linear and up and down for a while though. Very soon you'll get to where it's just up and up. Thinking of you and sending you all the well wishes! Hope we get an update soon with good news. 

Melinda Donahue  Kimberly how are you feeling. I hope you are improving !!! Did you go home yet ? Is this all under control. ?  Sending love and prayers. 

Susan Lynn  I agree with Richard.   I had sensations from nerve regeneration,  but this pain sounds different. Good luck,  Kimberly. 

Pamela Gregory  There is a heart warrior on this site named Clara (I think) who had a mini thoracotomy and had a difficult time with pain for quite some time. Hopefully yours is nerve related but definitely let your Dr. know what is going on

J Alexander Lassally  Kim - I'm sure it is nerve related - you know in thoracotomy, they manipulate one's anatomy significantly... I am betting it will remit with time..  

Kimberly Eisenhut  I told nurse today and she will check everything in morning. I've also reached out to cardiologist and she's getting back to me asap also. It's just frustrating because I feel I go one step forward then two steps back. I just spoke to someone on another site with heart valve patients and one of them said with her right sided mini thorecotomy she had NO pain, was in hospital 3 days and no pain meds. I know, I know ; "Don't compare yourself to others !" It's hard sometimes though🥴

Rose Madura  I know it's frustrating at times. But I think you are doing well after one month.  We all have a different set of complications and yes, you are correct not to compare your recovery to others.  It's not a good place to go...🙏❤️‍🩹

Fidel Martínez Ruiz  Kim, I also think that is nerve related, above all bearing in mind that you feels it worse during deep breathing. Anyway it doesn´t hurt to see cardiologist.

John Cook  I did not get clips (that I’m aware of).  I did get an ‘implant summary card’ for when I need a future MRI.

I think it is weird that it wasn’t mentioned but they could have forgot.

Richard Munson  I think my hvs step daughter needs to find everything there is to know about the clips. Forgot ? Not possible. Clips for what? Possible they are very necessary, but for what is a fair question. The fact they are titanium not nickel is luck? Not thinking luck should play a roll in ohs. I would be all over them like a new suit. In a professional way of course. Unlikely is also a strange response about migration. 

Rose Madura  I am in Crystal Lake for the weekend. My husband and I will be at the Culver's in McHenry at 1:30 pm tomorrow (Friday). Care to join us for an ice cream (custard)?  I'd love to meet up with a fellow warrior if you feel up to it.    

Valerie Allen  Could it have been the left atrial clips they often do so blood clots don’t form? Just speculation. I asked for this to be done but I had a BAV. 

Marie Myers  Hemastatic clips are commonly used in surgery to stop bleeding. Some vessels  are tied off, and some are clipped (many are titanium or steel) . I wouldn’t give it another thought…
I got the valve card, but that is the only one I got. I had no problems ever going through security at airports..

Fidel Martínez Ruiz  Kim, you can rest easy wearing titanium inside. It´s a perfectly biocompatible metal and has been used decades in traumatology dentistry and many other medical branches. Besides, when somebody open your grave in a hundred years or more, will find some titanium pieces along with a beautiful skeleton. What a treasure!!

Deena Z  I second Richard in supporting the experienced opinion of our Nurse Marie.  And I think everyone receives a card for each valve repaired/replaced.   

Kimberly Eisenhut  Well, I thank you all for your input😊👍 I did ask to speak to or get a telehealth visit with surgeon just to clarify the clips question. I've not heard back. I understand they are necessary at times, I just don't understand why, when I asked at my follow up, as well as before my follow up, the nurse of the team did not directly answer the question and seemed to deflect instead . It should be a very simple answer and valid one, as Richard said. I will reach out again to team and expect a call or video visit, especially since I did not see my surgeon at my follow up. I think that's fair. Thoughts?
I also would like to see the proof the clips are titanium as I was told in MyChart message. Or I think I can actually request the full report of the surgery including all notes and such . I'll just do that. Richard, which would you do? Some step fatherly advice is welcome🙏
Marie, I trust your opinion and I'm sure worrying about it after the fact is pretty pointless, but I'd like to know what to watch for in future as far as if they do migrate, as team nurse said is possible. Just like you get your repair checked yearly, I'd want the clips checked also. 
Melinda, have you talked to to your Dr about the wires they left in and what they do to check on them? I guess when i think about it , it really doesn't matter, as it's done and for whatever reason, I'm sure it saved me from bleeding during surgery, so is pointless to worry about. Just would like to be fully informed is all. I'm planning on making and sending the whole team and cardiac floor at Bluhm Cardiovascular Institute a custom  keychain as soon as I am able. I truly appreciate my repaired valve🫶 looking forward to a long, healthy life with my beautiful ❤️

Richard Munson  Thanks, sun is out here, pretty warm. Top down day, not many if any left. Drove 100 miles, my only destination was dunkin donuts for a strawberry frosted donut and a sabrinas strawberry daydream  cold drink. Clogged arteries no doubt. But happy ones.

Kimberly Eisenhut  That sounds like a perfect day Richard, wish I could've been riding along😊 So you like strawberry I presume 🍓

Kimberly Eisenhut  I'm going to see if I can get that strawberry daydream tomorrow! Just looked it up and sounds so yummy🍹

Kimberly Eisenhut  I wish I could physically be in a room with all of you and just talk, hug and feel the love and understanding we have for each other. I can honestly say I truly would not be this strong and feel supported if not for the compassion and friendship here. My family, especially my 20 year old amazing son Matthew, has been here for me every step of the way so far, but it's others who've been where I am that truly understand, can give advice, words of wisdom and strengthen me and give me hope❤️🫶 

Kimberly Eisenhut  Well, not feeling better but still need to make money right!? Bills don't pay themselves, am I right? 👍💪

Janet Gaffney  You’ve got some really cute things in your shop! Perfect stocking stuffers for Christmas!
 I just ordered two keychains - one each for my kiddos - and this one for me because it’s just so appropriate as I undergo my upcoming surgery! 

Aaron Bader  I'm sorry to hear these first few weeks back home post-surgery have been so tough, Kim.  I had a few nosebleeds myself early on (also was on blood thinners), and that's definitely unnerving.  What I do know - your strength and the support of your family will get you through this tough patch and continuing on your recovery.

Pulling hard for you and cheering you on.  You got this!

Richard Munson  Seems like a urine and stool test for blood loss makes sense. Maybe tell them you want it. Urine test can detect blood very quickly. Just stay strong hvs step daughter and take charge. 

Richard Munson  Believe it or not we just had a plane crash on the highway pretty close to our neighborhood. Both occupants perished. Not sure why a small plane would take off in a noreaster but people take risks i guess. It was so bad we decided not to walk shadow. 

Marie Myers  It took about 8 weeks for my blood count to come up. Just how low is your hemoglobin/hematocrit? Are you feeling dizzy or excessively weak? I was put on iron right out of the hospital, and was advised to add whey protein to my overnight oats or smoothies. And i am curious, do you know what your blood count was before surgery?

John Cook  It sounds like your anemia issues are much worse than mine.  With iron supplements, taking them with something acidic & high in Vitamin C helps absorption a lot.  That’s why they specifically recommend taking it with orange juice.

If I have the time, I try to take my supplement an hour before I eat and take my other pills, especially naproxen and Pepcid because they both inhibit iron absorption.

I see my rheumatologist Thursday again about my anemia.  Right now I’m inclined to believe it’s the arthritis medication he gave me causing mine.

Kimberly Eisenhut  WBC, 6.8
RBC, 2.83
HGB, 8.4
HCT, 27.4
MCV, 96.8
MCH , 29.7
MCHC, 30.7
RDW , 15.7
PLT, 451
MPV, 8.7
Surgery was Sept 26th
Hemoglobin went up from 7.4 since sat. at least

Kimberly Eisenhut  I haven't had a nosebleed, blood in urine or stool that I can tell. Did ask for stool test for blood, but told not necessary yet.

Rose Madura  It sounds like Dr Malaisrie and his team are on top of it. I didn't have your type of issue but I had plenty and I know how scary and unnerving it can be.  I know you would feel safer and more secure back in the hospital but as easy as it is for me to say it, try to trust your doctors.  Patience is hard to come by when you are worried and I get that. I'll say a prayer right now for you to have peace and to get the answers you need.  God bless you. 🙏❤️‍🩹

Marie Myers  I was around 8 when I came home from the hospital. 2 weeks doesnt seem that long to be very worried, since your Hgb has come up 1 gram since last Saturday. Continue to eat nourishing, high protein foods, and like John said, take the iron with something acidic with Vit C like Orange juice.. Think blood-building thoughts!!

Pamela Gregory  Thinking about you Kimberly and sending prayers for improvement in this bloodwork! I do remember my bloodwork was a mess for quite a while after surgery. They actually gave me a blood transfusion sometime during my 2nd week in the hospital. After a couple of months it did get much better

John Cook  You’re definitely more anemic than I was.  I don’t know it’s a little or a lot.

Around Week 5, mine were:
RBC: 3.92
Hemoglobin: 10.3
Hematocrit: 33.5
MCV: 86
MCH: 26.3
MCHC: 30.7
RDW: 15.9
Platelets: 406
MPV: 10.3

My numbers have improved since then even though they are still off.

Melinda Donahue  Hi Kimberly - I have so much trouble navigating this site on my phone - currently on my chrome book - I hope you are feeling better today.  I saw some of your postings last night and went to sleep - finally thinking of you and praying that today will be better.  Please let us know.

Kate Watson  Hi Kimberly, I looked back on my labs after surgery and they were very similar to yours. It took about 2 months for my numbers to (mostly) normalize. I know one of the important things they look at is that the Hgb is trending up, and not coming down. I'm sorry that it's bumpy right now. It's all exhausting and stressful but it sounds like your surgeon is keeping a close eye on everything.  Hang in there!

Doris Wunsch  Hope all is going well for you. It sounds like the blood work may take time to resolve. I’m new to the journal and may not be keeping up on your progress reports. 

I, too, will need tricuspid valve work done after testing is complete in December and would like to learn more about your situation when you are feeling up to it. You are the only one I’ve noticed  with tricuspid valve surgery. Is it possible to connect outside this webpage, I doubt others will be interested. 

Kimberly Eisenhut  Doris, I also have had trouble finding tricuspid patients. I have not had pacemaker leads, but my tricuspid went from mild to massive regurgitation in about 8 years of following it. I had the Medtronic contour ring to pull leaflets together and it is now trivial regurgitation. My surgery was at Northwestern Bluhm Cardiovascular Institute in Chicago. I'm sure Cleveland Clinic will be able to help you. Keep us posted and if you would like to contact me here, just go to my guestbook and leave me a message any time🫶

Rose Madura  Kimberly, I'm surprised they didn't give you one at the hospital.  They gave me one that I liked but I can't find anything online that looks like it.  Just make sure it is front closure, adjustable straps (and wide straps). Mine looked almost like a vest.  I wish I could find it. If I do, I'll post it.

Yumiko Ishida  I was given a neoprene vest specifically designed for women. It provided a lot of compression, I think to keep the sternum together, but it probably will help with swelling, too. Look for something with a lot of stretch.

David Buchanan  Im the same . Not sure we can do more than keep it elevated with a pillow .

It’s 12 days now for me and it is improving !

Janet Gaffney  You’re home - how WONDERFUL! Obviously, I’ve no experience YET with surgery but my sister in law just had double bypass and they gave her 4 bras at Mount Sinai and she sent this picture. Here is a link to their website: https://www.mastheadpink.com 

Kimberly Eisenhut  Janet, thank you, I'm just seeing this now. I'm going to find oneand see if it helps , thank you so much!

Deena Z  A  technically  competent ICU nurse is great and one that is additionally compassionate is extraordinary.  - can make or break your hardest moments.  (I had both.).  Did you get her to sign your heart pillow with a magic marker?!

Aaron Bader  You're looking great Kimberly! Wonderful to see!
And could not agree more about those amazing nurses - a special, special group of people.

Melinda Donahue  Hi !!! So happy to see you.  You will get better a little each day. The ccu nurses are the very best.  Sending ❤️ 

Fidel Martínez Ruiz  "Face is the mirror of the soul" is said and you look great, Kim,  I'm glad you are improving every day after surgery.

Rose Madura  Great picture. I had terrific nurses.  Some more outstanding than others but all great.  My fav was Andy who would make my pillow fort for me whenever I got out of bed.  Adam is right, slow and steady wins this race. 👍❤️‍🩹

Kimberly Eisenhut  Thank you everyone. Definitely good hours and not so good ones, but figuring out right med routine is tricky. I'll be going home later today. My amazing mother has been here with me the whole time! She's such a trooper! For everyone in waiting room like I was for 9 years, please know there is so much great care and outcomes now, you will get through it as I am👍💪

Rebecca Vaughan   Wonderful to hear you are getting better day by day. So nice to be on the recovery side. Congratulations! 

Grace Mason   You look great Kim. Welcome to the other side!!
You have a lot of wonderful people taking good care of you.

Pamela Gregory  Soooo happy to see you looking so well! I'm sure it has been tough but you look amazing. So proud of you

George Gardopee  You look amazing. You remind me of the disaster recovery service whose advertising slogan is “Like it never even happened”.

Pamela Gregory  You made it Kimberly! Definitely stay ahead of the pain. My husband and daughter would write the time down and start bugging them about 15-20 mins before time so that it didn't get too long. One time it was too long and the only time I remember being in distress. After that we were on it. You are doing great and soooooo happy to see you on the other side

susan harris  Such a long time coming-you did it!   Such awesome news to hear when i signed on this morning!  Keep up the good work!

John Cook  You’re looking great and if you remember the first two days, you’re off to a better start than I was.

Kate Watson  Yay there she is! Definitely true what others have said is to try to make sure to stay ahead of the pain and don’t hesitate to bug the nurses if your pain isn’t well controlled. They can always give you something else and adjust dosing as needed. Iv Fentanyl worked the best for me fyi. 

Robert Miller  My medical team said don't try to be a hero and suffer pain. They said we won't give you meds unless you need it but ask if you need them. Nobody will judge you. I actually didn't have to take them beyond the one day when they give it to you without asking. But really, take them if you think it makes it easier for you. My biggest pain was from a stiff back and neck after surgery. My mom gave me those cherry pillows they made like 50 years ago so you are warm when going to bed in winter. Those actually helped for stiff necks, backs, etc. 

Robert Miller  It looks like she was ready/relaxed for the surgery. The surgery is easy. Recovery is harder. Make sure you help her with everyday tasks for the first few weeks. 

Kimberly Eisenhut  Thank you Melinda! Yes Robert I will def help her with whatever she needs. She's my best friend! 💖 

Janet Gaffney  You’ll be on your way to a much healthier YOU. You’re being a great mom by taking care of yourself! ❤️

Robert Miller  I am confident you will be doing fine. Judging by your comment, I think the biggest thing the surgery will do is refocusing your life. Family is everything and even for people who do not have family, make every moment count. And after surgery, your heart will be a lot stronger to enjoy all those moments.