Kimberly sSt.Germsine-Durr posted a note for Thomas that says:
It's Kimberly St.Germaine-Durr from Cleveland Clinic ! I tried your contact information from your company email. It kept kicking me back. I was in Dallas and thought maybe my husband and I could catchup with you and your wife . I have to say I've been so worried that you weren't ok. I knew that you had some surgeries after CC. Anyways I was cleaning out my emails and came across this site that you sent me! Low and behold here you are!!! I'm so relieved and glad you are doing well!!! I know we only met briefly but your compassion fof what I was going through with my mom meant so much! To think back and realize you were a patient and not a loved one on the exit seminar . Here you are consoling me! It meant a lot and I want to thank you !!!! My mom had her follow up appt and did awesome! So proud of her !! Strong little Irishwoman!! The Drs in Syracuse NY were estatic on her procedural success!! Do you have to go for a 2 year check? We do , but haven't booked it yet! Were shooting for May when the weather is more predictable . Congratulations on your beautiful boy!!!! I have 3 ! They keep busy and out of trouble !!!!! I'm so very sorry about the loss of your mother !!! I can't even imagine !!! Know that our prayers are with you ! I'm do glad I saved this email !!! Made my morning that. You are doing good and running healthy !!! Touchbase when you can ! Here's my email again email@example.com. I will be in Dallas again in September . Business is growing great ! Love being a part of something that is changing so many peoples lives in a positive way! Maybe we can connect then! All the best to you and your family!
Connie T posted a note for Thomas that says:
I don't stop by the site often, but took a chance tonight and saw your post.
First let me say congrats on your new bundle of joy. What a true blessing for your family! And please accept my heartfelt sympathy on the loss of your mother. I lost my mom to liver cancer in 2006, and my dad to breast cancer in 2007....and I miss them both everyday. My parents were always there supporting me through my many surgeries. When I had my OHS, I felt them both with me....I felt my moms presence @ my heart cath & TEE...(she knew I would be scared)...then I knew they were both with me as I waited in that hall in Cleveland waiting to be moved to the OR....I know that was a big reason I was so calm...that & my faith. Just like my parents have felt close....I know Tom, you will feel your Mom for the many milestones you will experience in your personal life...by yourself...and with your precious little family.......everyone needs a special angel.....and although you would much prefer she walk on earth with you.....you now will never be alone....as she guides you, comforts you, and rejoices with you.. Mom angels are just the best! :) May you find comfort in the memories....
Thinking of you..
Deb Ziegler posted a note for Thomas that says:
For some reason, I have not been receiving your posts anymore. I just happened to run across your latest on the site, and I was truly sorry to read about your mom passing. It is very difficult to lose someone to cancer, and my heart goes out to you and your family. I was happy to read about your new addition though, and I hope he can help you through the grieving process.
It sounds like your ticker is doing well if you are back to running. Glad to hear it!
I'm feeling much better since I started taking a beta blocker. Go back to Cleveland for a check up in mid October.
Denise Kirchner posted a note for Thomas that says:
Tom, I am so very sorry to hear about your mom andher hard fought battle with cancer. She sounds like a wonderful lady. I too lost my mom when my kids were 5, 2 and 8 weeks - she had stage IV breast cancer - that was back in 1983 right after our twins were born. It has been 30 years and I still miss her so much. She too said it saddened her that she would not live to see her grandchildren grow up. My thoughts and prayers are with you and your family at this very difficut time.
I am glad to hear that your foot has healed and you are running marathons again - that is great.
It sounds like your new little guy is doing great as well. God always provides blessings when we are going through trials - your little blessing will bring you lots of joy in your sorrow. Your mom is smiling down on all of you from heaven:)
dese53@ aol.com posted a note for Thomas that says:
Hi Tom, I just went onto your page and saw your new pics - what a handsome baby boy! I can see you now at next years Cleveland 5K pushing little Thomas all the way to the finish line! Enjoy your lite guy - as you know they don't stay little for long. Take care and stay in touch.
Holly Pomeroy posted a note for Thomas that says:
Hi Tom! Glad you were able to post a one year update! Sorry about your stress fracture...or bruise, whatever it is...but glad you persevered through the race! Good for you. It's great to reach that one year mark.... just think back for a minute to what we went through.... it's a sobering thought. I'm so thankful for the information and support I found on this website and through people like you. Good luck to you and Natasha, (maybe you are having the baby right now!!!) and I wouldn't mention the "full waddle" mode to your wife, just tell her she's beautiful and you're proud of her!!! Take it from me, I'm a labor and delivery nurse!!! Looking forward to pictures!!! Keep in touch!
Connie T posted a note for Thomas that says:
Been watching for your post! :)... Denise & I were so hoping we could make it to Cleveland to cheer you on this year....but because of other obligations on both our parts...just couldn't swing it!.... but sure will try again for next year!! :)
Congrats to you & your family on the new babyl... be sure to.keep us posted when the "little" one arrives... and great news about your business too.....sounds like everything is falling into place just as it should!...
Continued good health, Tom...as you move forward towards year 2!!! :)
Hi Tom, I just posted my one year and it got me thinking about you and wondering how you are doing? How is Natasha doing and did you find out what you are having? Looking forward to seeing a post and some pictures on here when the new little one arrives. Sorry I didn't respond to your last update, but WAY TO GO!!!! Good for you. I'm glad you are able to run and doing so well. Hopefully your business is on a roll now. Thanks for your encouragement and notes throughout my "recovery", it's great to have the support of this community, isn't it?
Take care, and know I'm thinking of you today.
Good to hear from you and that you're doing so well. I envy all you runners...I just don't think I have it in be. I can't even do the treadmill without holding onto the bars. I guess I don't have very good balance or the body type to run. I'm sticking to my aerobics classes twice a week and walking once or twice a week. I am so looking forward to warm weather so I can get out in my gardens. I missed out on most of my heavy duty gardening last year because of this whole heart thing. I am definitely strong enough for it this years....hopefully my lazy streak won't take over.
Please let us know when the baby is born...will be looking forward to pictures!
Thanks for your response. As it turns out I will not be able to make it to Cleveland in May. I walk in the Relay for Life in my home town of Tiffin, OH every year in honor of my Mom who we lost to breast cancer 30 years ago and my 3 sisters who are all breast cancer survivors, and of course if falls on the weekend of May 11th and 12th. We will just have to keep in touch try for another time. Keep me posted on how you are doing and be sure to post on the blog when Natasha has the baby - of course I expect pictures to be posted too! Take care. Denise
Somehow I missed this post! Congratulations on the little on on the way that is exciting! Glad to hear your are doing well with your running etc.
I am still having my ups and downs with occasional shortness of breath. I didn't have much of that before surgery - was pretty asymptomatic - and now post surgery with this moderate leak I am having occasional bouts with it - go figure!?! It is a little discouraging to say the least. I am off the betta blocker and on an ace inhibitor now which my cardiologist said is better for my leaky valve. So far I am doing okay on the new med.
I saw Connie Taylor (fellow HVJ blogger) last week. Ric and I had dinner with her and her husband Dan. We just live 50 miles apart ahd have become good friends. We try to meet halfway for dinner every couple of months. She told me about your post and that you have another baby on the way. I haven't been on the blog much - just busy with work etc.
Are you still running the marathon in Cleveland on May 13th? Connie and I talked about the 4 of us coming up to cheer you on and of course finally meet you in person! Of course with the baby due in early June maybe your plans have changed. Keep us posted and let us know.
Hi Thomas! I agree, what a year we have had, and am looking forward to 2013 too! CONGRATULATIONS on a new little one! That is awesome news, I'm so happy for you! On the other hand, sorry to hear about the bankruptcy but am sure your new company will do well. I would give you work if you were closer!!!
Way to go on running your marathons! I'm in awe of your ambition and endurance!
Are you off all your medications now? I don't have to take any medications, and it seems strange to not have that daily routine of "pill taking" in my schedule anymore. I still worry about a re-do in the future, as most of us do, but know that if necessary I can do it again. In a way it's like a dream, and some days I even forget that I had surgery!!
Glad you are doing so well. Keep in touch!
I wrote the long note about going to the er and not being fully tested in my opinion.
My name is Nanette. I have a cardiologist at the top hospital in town. He suggested on Monday that I just increase my medication and I told him I had concerns - he said he was not overly concerned and felt that giving me a cardio catherization would be too risky given I am not showing signs and the risks outweigh the benefits at this time.
He gave me a ekg which always shows negative. I will get a second opinion just hope nothing happens in the mean time.
I am so glad you made this site and took pictures as graphic as they are but necessary for people like me who have similar stories just like yours. I am now 43. I have known about my mitral valve prolapse since I was about 11 or 12. I frequently had pain when I was young and my mom finally took me to the doctors and after testing I was diagnosed. About 4-5 yrs ago I started having dizziness, increased chest pain. I was even told I did not have mitral valve and there was no need for me to take antibiotics with surgery, that I was misdiagnosed. In May or June I saw a cardiologist after marked tiredness, dizziness at anytime even work, and chest pain. I was told I do have mitral valve prolapse- of course I was not surprised. I had a stress eco- and they found moderate to severe regurgitation on stress. I was placed on diltiazem 125mg - had shortness of breath an er visit and then dropped down to nefedipine 25 mg.
I have been having pain again- I just left the ER today and doctors told me that since all my blood work was normal- and my insimes - were normal I'm not having cardiac pain, and not having a heart attack. I asked for cardiac cathaterization and was denied. I was offered at 3:00am to make the decision if I wanted to go or stay - because the doctor did not think I needed to be admitted. However if I decided to leave- I would need to sign a waiver agreeing that I was leaving the hospital against medical advise. The previous doctor who - was causious and treated me prior to this doctor ordered nitroglicerine which stopped the pain - she followed up with nitro patch with additional nitroglicerin. The pain left- but did come back and the same is still happening as I am writing you. I find it frustrating that patients like myself are not at least tested. I feel something is wrong. I was told to see my cardiologist whom I can only see during the day. I started a new job- my dad died last Sunday and his funeral was yesterday. I know one might suspect stress- but does the eco I had said the regurg is worse with stress- I think I'm stressed. I am going to see the cardio or someone else Monday- but they could have given me the cardiac cathaterization just to be sure. I was told about the enzymes in my blood showed no indication of problem and the cath does not fit protocol to order. I think the docs and hospitals face greater risk not testing, because my condition is known to show a lot of negative and is a silent non- indicating condition and can be fatal. This info did not come from my Cardio doc. He told me I had a special case- he ordered the medication with no explanation. He never said moderate to severe regurg. I got a copy of the report from my breath health doctor- who I asked to print me a copy. Obviously concerned-I'd like to hear your response and if anyone else has had opposition like this. It makes you feel guilty for going- or silly. The doc said to me its worry, or your dad just died- broken heart syndrome, stress, worry. I know my body- and I need the doc to order the test. Maybe they thought I was by-passing my doc- my cardio doc- I'm not I am trying to see whats happening- and my pain was concerning enough to go to the ER. I'm glad to see how successful your surgery was- and how quick your turnaround was. I had a client who had her chest cracked after the catherization was done- and the eco missed her blockage only weeks prior to going to the er. Thank you- great idea to share your story.
Glad to hear that you are off the coumadin, that is a huge step, and one medication you won't miss!! Also good to hear you are doing so well and functioning without a p wave at times!!! It sounds like you are doing the right thing if it shows up when you run or exercise. Keep up the good work! How is your scar healing up from the wound vac? Mine is fading in the middle but both ends are still pretty purple/red. I'm trying Mederma like Denise suggested, we'll see how it goes.
I was so relieved to get that fee removed from my bill, what a pain in the butt! Lot's of worry and phone calls. At least my perseverance paid off. Nice of my surgeon to take care of it!
I hope you and your family have a Merry Christmas!
Glad to hear everything is going well! Sounds like our tickers are having very similar problems....that is pretty much the same report I got after all my testing. My heart does not beat normally, but it always goes back into sinus rhythm. I don't know if your irregular beats make you feel bad or not, but if they do, a beta blocker really helps. I feel a ton better since I started taking one ( although I think it is making me gain some weight). I'm sure you are very glad to be done with the Coumadin......I could hardly wait to get off of that after I learned it was rat poison!
Good luck with your running. I'm sure you will be breaking all kinds of personal bests next year.
Happy holidays and God bless,
Thanks for your upbeat response to my CC visit. It helps to get positive input from others.
I am back to my pre-surgery regimen of walking 2 to 3 miles on the treadmill 5 days a week, plus continuing the strengh training with my 3 pound weights at home that they taught me at rehab. It just feels so good to be active again. I am also back to work full time as of the first of November and adjusting to the longer days.
I will keep in touch and look forward to the possibility of meeting up with you when you are in Cleveland in May '13. Will your wife be with you - would love to meet her as well!
Sorry it took me so long to respond. We left for Cleveland Thursday night and just got back this afternoon.
i am sorry to hear about your heart rhythm issues. From the post below, it sounds like it is not anything to worry about, but I don't blame you for being concerned.
Hey I will take your trace to mild leak any day over my moderate leak - lol!
You can read about my echo stress test results on my journal that I just posted earlier. I am okay with the results and just need to move on and live my life and stop worrying about it. Yes I had a less than prefect repair, but hey, I'm alive - sure beats the alternative - right?!
Well, take care and try not to worry too much about the rhythm issue and the mild leak. You are doing great!
Sorry to hear about your junctional rhythm. I was in junctional rhythm in the hospital, and off and on during rehab. I have no idea if I am still in junctional rhythm now, but I do know that my heart rarely beats normally anymore. Still throwing a lot of extra atrial beats and skipping beats with some atrial flutter now and then. I've been to two electro physiologists ( one here in Milwaukee and one at CCF), and they have both told me the same thing.......the extra beats and skipped beats can be very annoying, but they are nothing to worry about. Went to a new cardiologist a few weeks ago for my one year check up, and I passed the nuclear stress test, echo and holder monitor tests with no major problems, even though I still have the very annoying palpitations. My new cardiologist put me on a low dose beta blocker for the palpitations, and I have to say, I feel a ton better! They aren't gone, but I don't feel them so much anymore. The beta blocker evened out my heart rate too. My heart rate used to go from a low of 37 to a high of 170 or more when I was working out. Now, it is usually in the 50's while resting and 120 to 130 while working out. I don't know if this is at all helpful for you, but I thought I would throw it out there. Are you in junctional rhythm all the time, or just sometimes?
Good luck with your electro physiologist visit. I can't say I learned a whole lot from the ones I went to, so I hope you have better luck.
Hi Tom! Way to go in the 5K!!! Sounds like that darn junctional rhythm isn't doing too much damage. Sorry I haven't checked in for a while, I read the journals now and then, but not like I used to. I'm glad that your echo went so well with only a little leakage, that's what they told me too. Let's just pray it stays "minimal"!!! As for the junctional rhythm, I wouldn't worry too much about it, you have been doing fine so far, and it hasn't interfered with your running. Even if it is scar tissue, I doubt that they will do anything about it.... Just stay tuned in to your body and keep track of that heart rate! Keep us updated. My thoughts and prayers are with you!!
Oh Tom, what a bummer.
Is Junctional Rhythm one of the detailed descriptives of Atrial Fibrillation or are they two separate diagnoses? I'm not sure if I asked that question properly ....I'm just trying to understand why you had A-Fib before you're surgery along with Junctional rhythm.
will be looking forward to your update in two weeks.
I'm just checking in after not doing so for a long time. I am so glad to hear you are doing well. Great news on the race and cute that your daughter participated without wiping out. :)
I will have to post my own update very soon. I feel well and life is good. Keep up the good work. Karen Campo
I'm a runner (a very slow one though) and the take away from this article for me is that i don't have to run marathons to be healthy. I'm sending to you to add to your exercise database and you can take what you need and discard the rest. The idea of a marathon does intrigue me and I may just train and run one just to say I did one.
Hi Tom, so good to year that all is going well with you - will be anxious to see what your 6 month echo shows. It sounds like you have been keeping busy with the 5K's etc. I have this week and next week and then I am done with cardiac rehab - am going to really miss the nurses and the people that I have come to know over the last couple of months - but time marches on...... I will be posting something yet tonight on my journal - my MRI came back normal so that was a big relief - have only had 2 more ocular migraines - I will just have to live with them - they don't hurt just more of a nuisance than anything.
Yes, and I am anxious to see if all my hard work at rehab will have an impact on the severity of the regurg. I met a new patient about my age in rehab yesterday and found out he had mitral valve repair with a thorecotomy on August 1st here in Dayton at Miami Valley Hospital. He was braver than me as they do not do many repairs at MVH, which is why I went to CC - however, I must say he seems to be doning fine and has had no complications.
I went to my GP today because I have been having frequent ocular migraines - daily for the last 4 or 5 days and it concerns me. I had them before surgery and maybe once a week right after surgery, but never this frequently. She was glad I came in and has ordered an MRI just to rule out anything serious. She said my heart sounded very good - quiet and no sign of a murmur - so I took that as a good sign!
Keep on eye on that arm and shoulder pain. It is weird how any ache or pain has us on red alert after all that we have been through, but better to be safe than sorry.
Have you ever been passed by a pregnant woman on a cell phone? I have. I think I could have beat her by lunging at the finish, but I thought how pathetic would that be!!! Wouldn't look good on the finish photo.
I have trace leakage from my repair. My cardiologist is happy with the outcome and I don't have shortness of breath or other symptoms anymore. So I'm OK with it although no leakage whatsoever would have been better.
Like you, I'm determined to keep running because there are many benefits. Also, psychologically, I'm running to continually stress the heart and if my valve repair holds up, then it should be fine in my daily activities.
Thanks so much for the info on determining your safe heart rate. I also read your post to Nancy B. I'll be starting rehab in the next couple of weeks.
I've walked/run the Bay-to-Breakers twice and the San Jose Rock-n-Roll 1/2 Marathon twice. I've not done the JPMorgan challenge yet. BTW, the Rock-n-Roll series has a 1/2 Marathon in Dallas in Mar 2013. Here is their link:
Congratulations Tom! Way to go! - but you really need to watch that heart rate - sorry, that is the mom in me talking - lol.
My cardiac rehab is going well, just really tired afterwards - probably the fatigue from the leaky valve. I am anxious to have the echo stress test done Nov 2nd to see how the valve is funcitoning with activity. It is hard to believe that this Saturday will be 4 months since my surgery.
Congrats on your recent race!
You met the challenges of OHS with determination to live a healthier life "on the other side"! In spite of a few set backs with your seroma, you pushed forward and are a true example of a HVJ success story... and give all the newbies courage & faith to know "it can be done!!!"
Way to go Tom, way to go!
I'm glad your seroma is finally healed and your able to run as much as you do. I'm doing way more walking than I did just prior to my surgery. I'll start running again after 3 months post surgery.
Did you come up with a calculation as to how high you want your heart rate to be? For me, I'm thinking it will be around 150 bpm. Just a guess on my part. Since I had a repair of my mitral valve, I just feel going above 200 bpm for an extended period, may not be a good idea.
Hi Tom, great update! Good for you, running the 5K and now a marathon! I am so glad that everything has healed up for you, isn't it a great feeling? I wasn't aware how much time it took to do daily dressings and always being aware of the open incision. It's so good to not have to give it a second thought. Glad you were able to get in the pool after all this year....!! I know it's been a rough 4 months for you, with the seroma, but glad that there wasn't anything more serious. I personally think there are some of us "special" ones that are given these complications so we can encourage those that follow!
I love the balloon fiestas!!! I grew up in Albuquerque and the one's there are awesome. Have fun!
Once in a while I still have the ocular migraines, it's strange. It's usually when I haven't had much sleep and am tired. I've been hesitant to put anything on my scars, just want to make sure they are healed before starting any creams.
Hope things are working out for you at your job and the long hours and stress are coming to an end! Take care and God Bless!
I am happy to hear you are doing well. It sounds like you seroma complication did not slow you down too much if you are doing a 5K this soon - that is great!
I am in my 4th week of cadiac rehab and doing well with it. I will not be running any marathons any time soon, but feel good at the level I am at right now. Looking forward to my echo stress test on Nov 2nd in Cleveland to see how my valve is functioning after I complete rehab. I am hoping all this exercise improves the rate of reguritation from moderate to mild. The cardiologist I am seeing at CCF says that that is a possibility. We shall see....
Take care and check in on the blog now and again to let us know how you are doing.
Hi Tom, is that surface incision all healed up yet? I've been thinking of you and hope that it's continuing to heal well. Great job on the rehab, it sounds like you push yourself daily! I still have numbness/pain on the right side, and doc says it can be 6-9 months before the nerves heal. I hope the fluid in your lungs has resolved, that can cause pain too! I'm doing much better now that I don't have to mess with the incision and dressing changes. You'll be surprised how much it occupies your day and mind, and how much you DON'T miss it when you no longer have to change dressings. I've done it for so long I feel like I'm not completely dressed without the bandages!! Thanks for all your support and encouragement, it has helped me make it through!!! Take care and keep in touch
Glad to hear things are going well for the most part, sucks about still not being able to use your pool. You are still kicking my butt in terms of the cardiac rehab. I just returned yesterday from a week at the beach. It was my goal to walk/jog(ok I focus on a point and sprint for maybe 30 seconds-1 min) 5 days of our 6 away. Didn't make the 5, but a pleased to say that while everyone else in our cottage slept in I was up and out before 7am daily for 20-40 mins of cardio. I also got knocked out by a rogue wave, scary, but the sternum seems fine. I turned to my 11 year old son and said 'Im not going to make this one' and he proceeded to dive under and I got tumbled...when I came up he ordered me out of the water. Love your sea monkey pic. Hope you get clearance to use your pool soon. Is it open year-round in TX? We would prob keep ours open until late September though today is almost Autumn like when the sun goes in.
Sounds like you're well on your way to recovery......finally!
Loved your pictures. You're daughter is adorabe.
As far as rehab goes...I don't quite understand the max heart rate thing. I'm 53 and my cardiologist originally set my max heart rate at 130. I've been reaching that and going beyond, so the rehab people got authorization from my doc to increase it to 140. I reach that and feel like I could go beyond and still feel okay. What determines your max? I know age and the fact you just had heart surgery play a role, but why are you allowed 160 and I'm at 140? I feel like if I am to increase my fitness, I need to push harder, but they keep telling me to slow down because my heart rate is maxed.
for example, I'm doing the treadmill at 3.6 with a grade of 6 but if I up it to 3.7 grade 7, I go over my max rate.
Hi Tom, thought I would check in with you and see how you're doing. Is that incision about healed up? You have probably learned way more than you ever wanted to about dressing changes and wound care!! Glad you are enjoying the rehab and feeling so well. Keep up the great work!
Hey Thomas! Sounds like you are doing great at rehab. Bit by bit getting that incision wound healed. Wow, that's been a journey.
About weight. Yeah, I lost probably about 5 lbs between in and out of the hospital. Not eating for a day, eating light for a few days maybe accounts for 2 to 3 pounds. Fluids going from high to low, maybe a couple more depending on how hydrated you were at the weigh-ings. Then a couple of pounds of measurement error each time depending on the scale. Folks that have some heart failure going in to surgery (probably not you or me) can see more dramatic weight changes as their edema (fluid buildup) goes away after surgery. And on the other side of the coin, it can take a while to lose the fluids that they gave you during surgery, so that can account for significant weight on the up-side.
I bulked up a bit pre-surgery and now 16 months later am at that same pre-surgery weight, although I've probably replaced those 5 lbs fat with 5 lbs of muscle.
Keep pushing yourself in rehab enough to see week-to-week progress. You'll amaze yourself with how much you can do. -- DVB