Kimberly's Journal

Well, it has been confirmed, I cannot use either of the transcatheter options Northwestern offers for the tricuspid valve because I am allergic to Nickel. I am ok with Titanium, but not the nickel. I have an apt with Dr Davidson Monday and will be talking about my options, but I will have to see Dr Malaisrie again and it will have to be minimally invasive or full open heart surgery, which does not have as good outcomes for tricuspid. I am also having another round of patch testing for other materials like chemicals in glues, adhesives, etc. that way at tleast I can try to avoid any other problems when it is time for surgery. My allergist also mentipned a scan I had in March that showed a lesian on my gallbladder that needs to be checked in Sept again. She is more thorough than my PCP! Cannot stand my PCP, trying to get a new one, but takes forever.
On a happier note, my wonderful youngest son, Matthew is 20 today! He has been such a wonderful, sweet, kind, loving son, and am so grateful for him. Cannot believe it has been 20 year already. He is my baby, I also have a 39 year old daughter and 35 year old son.
Wishing everyone a happy, healthy 4th week

Well, had my apt with the allergist and have my patches on my back with all kinds of metals. She said I will nt be a candidate for the CLASP 11 because of my nickel allergy. I am still having the testing done though to document all the metals I am allergic to. Have to go back thursday to have patches removed and hoping I do not get too itchy. I am now back to square one not knowing how to get this repaired and am feeling very defeated and anxious today! I want to get off this roller coaster, it is not very fun :/
Hoping the valve team can come up with a safe, affective repair for me soon.
Love and good wishes to everyone today

Well, still waiting to get in to get my "Patch" testing done to find out how allergic I am to nickel and other components that may be in the CLASP 11 or any other device to fix my tricuspid valve. I have always gotten a rash and itchy if I wear any jewelry containing nickel and I put that in MyChart. It has been extremely difficult getting in faster than months away for this testing and really had to push everyone to even get a Dr to consider getting me in quickly. I am supposed to get a call tomorrow about if allergist is wiling to squeeze me in in the next week or two. The valve team at Northwestern said they have never had this happen before (of course, lol), I told them I really do not think most people would think to include allergies like that in their charts because most people just think about allergies to medications when filling their chart out. I thought about this when my ortho was telling me I needed knee replacement which I have not done yet. I did find a couple of case studies that showed patients who had severe reactions to some of the heqart valve devices because of nickel allergy. One poor man suffered for a year before he could get it replaced and fixed. I'd rather not go through that twice. I just hope they can find something that will work for transcatheter approach, as it is the safest and best way to go for tricuspid and for someone my age as the head of the study at northwestern has told me the team thinks. I'd hate to risk open heart for tricuspid if I do not have to, but am just ready to get things moving along and get some decissions made.
Sorry for the loooong update :/

Why does everything have to be so complicated with me!? After seeing Dr Malaisrie, he suggested I go with what dr Davidson said and try getting the transcatheter TEER with the Edwards CLASP 11 TR Pivotal Clinical Trial Study. I have in MyChart that I have a nickel allergy and not sure why they did not say something about this themselves, as they are supposed to look at all of these things. I mentioned my allergy last night to them and asked what materials were in the device and they said there is a nickel alloy and said Id need to be tested for the nickel allergy because if i am truly allergic they cannot use it. I now have to try to get in to see a special allergist that does this testing, which can take months, but I have asked them to please help me get in quickly as I have been at severe regurgitation for several years at this point and did not know it. Why on Earth do they use this cheap nickel alloy to make such a device that is put in peoples hearts!? If I would have not said anything or asked this question, would it have been addressed at all? I have no other options for hospitals because of my insurance so have to trust in Northwestern. Adam, if you can help me in any way, I would greatly appreciate it. I am getting desperate at this point for guidance and help navigating as I am just exhausted.
Have not slept in 4 days and am exhausted with all of this. Having a lot more symptoms and Dr Malaisrie basically told me Tuesday that surgery has not shown to prolong life in tricuspid patients, which floored me and my daughter and sister. I am just feeling very defeated at the moment and need some encouragement from my HVS family. Love you all

Already got my results in MyChart this morning. It is massive regurgitation and I have to say I am pretty nervous right now. I heard back from Dr Davidsons nurse that the team will be reviewing everything and be ready for my apt on Teusday with Dr Malaisrie. I was told the diuretic may help it get better a bit, but seems as if it has made it worse since I started taking it, I just dont know and probably shouldnt guess. I almost wish I did not see the results, as now I cannot stop thinking about it and it really does no good to worry right now, as there is nothing I can do abut it. Please God grant me some peace for the future and stop my racing thoughts, I need a little peace going forward

Here is the response I recieved;
This ROA range is consistent with massive TR - however there are other measurements that are used as well to quantify the overall severity. We will be reviewing the images in our heart team meeting next Tuesday and I will reach out with an update regarding next steps.

Here are specific findings from yesterday;
Heart rate 62 bpm Blood pressure 115/73 mmHg Study quality: fair. MEASUREMENTS: Value Indexed Value Sinus of Valsalva 3.0 cm Left atrium diameter 3.1 cm (2D) Left atrial volume 54.2 ml. 29.7 ml/m². LV ID (diastole) 4.2 cm (2D) 2.3 cm/m² LV ID (systole) 3.0 cm (2D) 1.6 cm/m² IVS, leaflet tips 0.6 cm (2D) Posterior wall thickness 0.9 cm (2D) LV Global peak long strain -20.80 % LV stroke volume 78 ml (3D) LVOT diam 1.9 cm LVOT stroke volume 61 ml 34.4 ml/m² LV end diastolic volume 132 ml (3D) 72.4 ml/m² LV end systolic volume 54 ml (3D) 29.6 ml/m² Ejection Fraction 59 % (3D) RV basal diameter 4.3 cm TAPSE 23.2 mm S' 14.5 RV free wall longitudinal strain -34.30 % Doppler: Value AV Peak Velocity 1.4 m/s AV Peak Gradient 8 mmHg AV Mean Gradient 4 mmHg AV Velocity Time Integral 25.8 cm LVOT Peak Velocity 1.1 m/s LVOT Peak Gradient 5 mmHg LVOT Velocity Time Integral 21.6 cm AV Area Cont Eq VTI 2.4 cm² AV Area Cont Eq peak 2.2 cm² MV Peak Velocity 0.9 m/s MV Peak Gradient 4 mmHg MV Mean Gradient 1 mmHg MV Area PHT 4.04 cm² Mitral E Point Velocity 0.5 m/s Mitral A Point Velocity 0.6 m/s TR Peak Velocity 2.4 m/s TR Peak Gradient 25.0 mmHg PV Peak Velocity 0.8 m/s PV Peak Gradient 3 mmHg RVOT Peak Velocity 0.9 m/s FINDINGS: LEFT VENTRICLE: The left ventricle is normal in size. There is no left ventricular hypertrophy. Left ventricular systolic function is normal. EF = 59% (3D) Global LV myocardial strain is normal at -20.80 %. Left ventricular diastolic function is indeterminate. Mitral annular lateral e': 10.4 cm/s. Mitral annular lateral E/e': 5.2. Mitral annular septal e': 6.8 cm/s. Mitral annular septal E/e': 8.0. The average Mitral E/e' ratio is 6.6. LV Wall Motion: Left ventricular wall motion is normal. All scored segments are normal. RIGHT VENTRICLE: The right ventricle is dilated. Right ventricular systolic function is normal. Right ventricular systolic pressure could not accurately be estimated due to severe tricuspid regurgitation. RV free wall longitudinal strain is normal at -34.30 %. LEFT ATRIUM: The left atrial size is normal. The LA volume is 54.2 ml, 29.7 ml/m² when indexed. RIGHT ATRIUM: The right atrial cavity is dilated. MITRAL VALVE: There is mild mitral valve leaflet thickening. There is no mitral stenosis. The mitral valve mean gradient is 1 mmHg at a heart rate of 62 bpm. There is no mitral valve regurgitation. TRICUSPID VALVE: There is no tricuspid valve thickening. There is no tricuspid stenosis. There is severe tricuspid valve regurgitation. ROA(PA) is 66 mm². AORTIC VALVE: The aortic valve appears structurally normal but not well visualized. The number of aortic valve leaflets cannot accurately be assessed. There is no aortic valve stenosis. There is no aortic valve regurgitation. PULMONIC VALVE The pulmonic valve is not well visualized, but grossly normal. There is no pulmonic stenosis. There is trivial pulmonic valve regurgitation. AORTA: The visualized aorta is normal in size. Measurements - Sinus 3.0 cm. Sinotubular junction 2.8 cm. Mid arch 3.6 cm. Proximal ascending aorta 3.4 cm. CONCLUSIONS: -Two-dimensional transthoracic echocardiography was performed using standard views & projections with M-mode and Doppler (continuous, pulsed wave, spectral & color flow). Three-dimensional imaging was performed. Strain imaging was performed. -The left ventricle is normal in size. There is no left ventricular hypertrophy. Left ventricular systolic function is normal. EF = 59% (3D) All scored segments are normal. -The right ventricle is dilated. Right ventricular systolic function is normal. -The right atrial cavity is dilated. -There is severe tricuspid valve regurgitation. - -Compared to prior echo performed on 4/10/25, similar findings. Electronically signed by Dr.Paul Cremer on 5/21/2025 at 3:49:54 PM.

I had my specialized TTE with a very special TR (tricuspid regurgitation) protocal and it took a little longer than a regular echo, but Northwestern is commited to advancing knowledge about the right heart and tricuspid valve. I am so grateful they are putting more concern and research into the "forgotten" valve. I will find out what surgeon and valve team think on 27th when I go see Dr Malaisrie. Thanks to the wonderful tech I had today for being so interested and becoming one of only 5 techs to do this test at Northwestern. Very nice young man

Has anyone had pain or achy feeling under left breast in ribcage when taking Flurosemide 20 mg? Is it acid reflux or gas? I wil ask my Dr on Monday, but started 2 weeks ago and wondering if it is the med.

Spoke to Dr Davidson yesterday morning virtually and he said my trisucpid is indeed severe and he would reccomend minimally invasive, but first wants me to try Lasix for a month, bloodwork after a week on it, then a TTE in a month to see if it is helping the tricuspid leak less. He also said, unfortunately that medicaid always denies the minimally invasive or transcatheter because it is new and its cost. He said it is around $100,000! He did say my valve would be an easier fix than most he sees because it is only the one leaflet and would only need a small fix. If I was 65 and had medicare I'd have no problem getting any surgery needed. Of course I would get the open heart replacement if insurance will not cover other option, but it is not at all the best option. Very frustrating, so praying the Lasix will help dial the leakage back and I am able to wait. I will update after the TTE in a month and my next consult with Dr. Any prayers are so appreciated and sending much love to all of this community and to Adam for creating it. Dr Davidson and I spoke a little about Adam and he said he loves that he created this platform for us and all of the information this site provides. He has interviewed him and spoke to him at their 20th anniversary of the Bluhm Cardiovascular Institute.

Well, my cardiologist called me last night and said the valve team will be reaching out to me by end of this week. We will schedule a meeting and then after that they have a powow and get back to me about what the best way forward is. I wish everyone a wonderful Easter weekend and a happy, healthy week
"One beautiful heart is better than a thousand beautiful faces"

Well got my TEE results in MyChart this morning. Wish I would have not looked until I can talk to my Dr on Monday, but here is the result of the Tricuspid portion; (as well as I guess a hole in my heart probably from birth from what I gather)
-There is severe tricuspid valve regurgitation that is likely due to prolapse of the posterior leaflet. EROA(PA) by PISA is 51 mm². The tricuspid regurgitation volume is 49 ml. The 3D VCA is 0.53 cm². -Sinus of Valsalva 3.5 cm. Proximal ascending aorta 4.1 cm. The visualized aorta is dilated. -There is a patent foramen ovale detected by saline contrast.

O.K., just got back from my TEE at 1p.m. I have never had such pain in my throat. I had mono as a teenager and this is worse. I do not understand why my throat is all scraped up and severely red. The nurse did say they had to suction while doing it because I was coughing a bit and had phlegm. I just did not expect this and did not realize it when I was still there because I was out of it, or I would have had them take a look.
Has anyone else had this problem after a TEE? It is extremely painful just to swallow water and can barely talk. Hope its a bit better tomorrow.
Mary, can you maybe help me understand how this happened?
Sorry to be negative, I was not expecting this though. My son is making me a smoothy, hope I can sip it a little, as I have not eaten a thing since last night. Guess I will be losing a few lbs this weekend, LOL
For the record, I am not a wimp; I gave birth to 3 babies with NO pain meds or epidurals.

Well my TEE was rexcheduled with Northwestern due to not having the right "Team" in place for tomorrow. Now scheduled for the 10th at 11.30a.m. Will be a long week next week; MRI of brain on Tuesday, Nueroligist on Wed and TEE on Thursday! Woohoo! Hope everyone is having a good week and blessings and prayers to all today

Well, when I went for my ultrasound of my liver this morning, I happened to be walking out of the Northwestern Hospital here in McHenry IL where I live, (there are a few Northwestern hospitals out here in the suburbs of Chicago),and had a couple walking beside me and husband had a heart pillow. I asked how he was doing and had a long convo about how he just got a heart transplant 3 weeks ago downtown Northwestern Hospital and here he is walking around and his wife called him a "walking miracle". She teared up when she talked about how great the nurses were at Northwestern in Chicago and how wonderful they all were. What a wonderful chance meeting this morning

Well, had another episode with my eyes last nght and lost partial vision like a half moon white area in right eye that went away in about 10 minutes, then had an aura in both eyes that went away within about 20 minutes, Went to opthamologist this morning and all tests came back normal, so he said it is most likely something to do with cbloodflow to brain, wants my nuerologist to add MRA/MRV to my MRI downtown Northwestern next week,but not sure they will be able to add it so quickly, I am trying to coordinate between the Drs and hospital to get it done on Tuesday which is when I scheduled the MRI only with contrast. I have to go downtown because they are the only hospital that will do it for me because I may have a reaction to the contrast dye. I hope and pray they can accomodate and get it through insurance and get me in for everything at once. I am so nervous about what is going on and praying it is not serious. I have been having a lot of headaches and trouble even typing and doing normal daily activities these past few months. Things seem to be piling up here and not sure how much i can handle. I know so many of you have gone through so much and feel bad about posting my troubles, but this is really the only support I have and appreciate you all so much So much love sent to all here and I pray for us all nightly. Kim

Has anyone else had trouble with Amlodipine Besylate? I only take 2.5mg, but tonight about two hours after taking it, (I have been taking it for years now) my bp went down to 101/70 and pulse went from 70 sitting to 110 just standing up. Tried getting in the shower and heart was pounding and very uncomfortable, so had to basically get right out. Did not feel the need to go to hospital because I have had similar symptoms before, a while after taking it, but usually just wait it out. This one was worse. Not going to take this any more! Put a message in to my Cardiologist and will probably speak to her tomorrow. Just do not think I can take it any more. It is the lowest dose, so thinking I do not need it any longer, or need something different.

Went to my Cardiology apt today and she is ordering a TEE just to have a closer look at things. She is not saying I need surgery yet as I am still the same according to my stress echo last month, but to be safe and give me the chance to speak with the Drs at the valve clinic there. I scheduled it for Feb 25th. Nervous, but guess its something I have to do.

Went to Nuerologist last Thursday and he wants me to have an MRI of my head because of the visual issues I have been having. I just went to get notes for the insurance company so they would let me have my cpap machine. Sheesh, just one thing after another over here. My yorkie had pink eye (thats a first!), then needed meds for tummy trouble, so two trips to vet last week too. Then when trying to schedule the MRI, noticed he asked for contrast dye and I said I do not want contrast because of side affects so had to reorder and will schedule tomorrow. Ive been waiting weeks to get my cpap so I can sleep and must have made a dozen phone calls trying to work that all out. Im telling you, we need to do better with healthcare. I was also denied my stress echo when my cardiologist even did a peer to peer call with insurance. Hoping to get it in January though. Sorry for my long winded post, just been extra stressed lately.
I do appreciate you Richard for the funny things you've posted, did make me chuckle. Thank you HVS step- dad!

Well, my sleep study showed 7 apneas an hour and my blood ox went down to 80% during 6 of them. Not good! I will be hopefully getting a cpap machie soon. Yikes, more stuff🙃

Well, just found out my insurance is being dropped by all of the Northwestern hospitals out here, which is basically all there is out here, and all of my Drs associated with my insurance. I am just sick about this and so stressed!

Well, had a strange thing happen this afternoon with my right eye, not the one with the hemorage. All of a sudden had a half moon shaped blind spot in my field of vision that went away in like 10 minutes. I could still see out of rest of my eye, just a certain amount in center of vision was gone. I will be speaking to my eye Dr in morning and Dr. Just wondering if anyone else has ever experienced something like this. It was so scary.