Rick Holan posted a note for Diana that says:
I just joined the community blog. and was looking for information on ID bracelets. I have had my Aortic Valve replaced back in Oct. 2011. Feeling great, was wondering if i should have a medical Id of some kind. When I did a search on the site for ID bracelet your journal came up first. In reading I saw you where on coumadin. I myself am not on any blood thinners. Hole you are doing well.
Thanks for posting this update. So glad to hear that you are doing so well. I also have a biscuspid aortic valve. I am considering the Ross Procedure maybe toward the end of Feb. Meeting with surgeon in NY next week Feb 2. I am still asymptomatic. You can read more at my journal. Thanks again. It's inspiring to see people doing well post surgery.
Jeff Shebovsky, Orlando, FL
Thank you Diana. I'm still on the presurgery side. However that may change in as little as a month. It's good to hear from those that have been through it. I believe the anticipation is the worst. Oh, and I have a really hard time being patient . . .
Good to hear from you. The lower inch of my sternotomy has always been red and raised. It was painful and itchy and after 2 injections with steroids it is flatter and pain free. Wish I had thought to post about it as it could have helped you and others. Glad you're doing well, I am too. God bless our surgeons.
Glad you are feeling betterish :-) So did they rule out RA? My Mom has RA and while it didn't occur to me before when she had flares like what you have she would have those same symptoms. Anyways, keep feeling betterish.
There is a new test for ra. I found this in webmd, my rheumatoligist ran this on me and it was negative. - A new test for rheumatoid arthritis that measures levels of antibodies that bind citrulline modified proteins (anti-CCP) is more specific and tends to be only elevated in patients with rheumatoid arthritis or in patients about to develop rheumatoid arthritis. The presence of anti-CCP antibodies can be used to predict which patients will get more severe rheumatoid arthritis.
I would make sure he ran a CCP on you! Should help! Hope you get to feeling better soon!
Am sure you'll be happier when you get a definite diagnosis and then there will be a plan to treat it. For me, not knowing is the worst. Hope the next flare up doesn't occur. Take care. Thanks for the updates.
Glad to read your update. Spring is really a beautiful time of the year. I miss it, now that we live in FL. The motorcyclists are out all year round here and FL does not have a helmet law and I'd say about 2/3 of them don't wear a helmet, so stupid. Keep up the good spirits and weight loss.
Hey Diana. How weird I did the lawn thing last week too. I actually restarted a rock wall I was building last year before I got sick. Anyways sorry to hear about your tick bite. YIKES!
The flooding down here is not that bad. We have some roads closed and people not behind the flood walls and levys are kind of screwed but almost all of them have to have flood insurance and it is a part of their lives.
Random fact of the day; Louisville has the worlds second largest pumping station. It can pump like 20 olympic size pools in a minute so that keeps us pretty dry here and we have flood walls that are three feet higher then the 1937 flood which was a thousand year flood.
BUT downstream...Yeah not so good. Especially where the rivers meet. OY I was over there last week and it was frankly the highest I had ever seen. Litterally water as far as you could see. It was scary and amazing.
I was thinking about your arm. Has anyone ever checked you for throracic outlet syndrome? It is a type of nerve damage. I will spare you the details but google it. Anyways have a great Spring and congrats on 11 months!!!
Glad to read your update but sorry to hear of the return of some symptoms. Odd that no one can get to the reason for it all. You have a positive attitude and that goes a long way! Good luck with WW. I have a friend who lost 40 pounds and it took her almost 2 years to do it. The good news is it's been over a year and she hasn't regained a pound. She has a lifetime free membership for reaching her (and their goals). So, this slow but steady loss may be the winner for you. Enjoy spring.
So glad to hear you are doing so well. I think of all my fellow journal members often, and am glad to hear an update from you. We are also patiently waiting for the weather to change into a beautiful spring. We got a taste of it last week when it hit the 60's. Unfortunately, snow is in the forecast tonight. Glad to hear the shoulder pain is on the mend...as I posted you awhile ago I had a few incidents of severe shoulder pain that resolved itself.
Great to get your update and know the shoulder problem resolved itself!! It's amazing we get through these surgeries when we realize the trauma that happens to our bodies. God is good. I'm coming up on a year next month and had a surprising setback with 4 days in the hospital. Had retained fluid and had pulmonary edema (cause unknown). So, instead of draining my lungs as they did post op, I got Lasix intravenously and severe restriction of my fluid intake and it worked. Still have some remaining fluid and using my spirometer for that. Blood pressure still elevated.but don't want to be a cry baby, I can do more that I did before the surgery and for that, I am thankful. Think spring, you'll get that weight off.
Hi Diana. I'm reading a book right now-"Healing Back Pain, The Mind-Body Connection" by John Sarno, MD. He maintains that often back, shoulder, neck or buttock pain is often caused by a disorder known as TMS (Tension Myositis Syndrome). It has to with how the subconscious mind deals with repressed anxiety or anger by creating pain as a distraction. I thought you might want to know about this disorder in case your doctors have not considered it. I certainly never heard of it until I got this book. Dr. Sarno also has a web site - just do a search using his name & it will come up. I'm glad to hear the valve is working well (mine is too!) & hope that the rest of you is feeling better soon. Take care, Joy V.
Hi Diana, I hear your frustration. Even though I have a diagnosis and have begun formal PT it is frustrating not to have range of motion and constant pain. Is your range of motion same as R with all positions on your L arm/shoulder? I actually saw a rheumatologist/immunologist/osteoporosis specialist last week and he immed diagnosed as anesthesologist and surgeon had as rotator cuff, nerve impingement, frozen shoulder issue. He did inject rotator cuff and I immed began PT with home exercises and equipment.
How frustrating with the shoulder issue!!
I guess the most frustrating part is that PT should help, but you still need a diagnosis first!!!
You sound like you have a great attitude and are not giving up!! That's all you can do.
You will get to the bottom of it I am sure....I think an ortho or sports medicine specialist is a great idea.
Good luck! I look forward to hearing the outcome and that you are progressing.
You've already come so far!
Sorry to hear no relief from your shoulder pain...so frustrating is right. I hope someone gets to the bottom of it. Well anyway it is great hearing from you! Have a Merry Christmas and a healthy, and hopeful New Year.
Hi Diana I think of you often and glad you are doing "better" all so relative isn't it? My L arm/shoulder/neck is still worrisome and very painful most nights expecially. Since I am no longer going to try a nerve block, I am scheduled for PT in 2 wks to see if I can get any relief, nerves just do not like to settle down. Sleep is hard to come by these days. My collapsed lung is resolving but I really tire although I am trying to go-go-go all day. Another month of rehab, I suspect. We too are having a houseful traveling from 3 different states, our grown children, grandsons (one of which is wearing a 30 day monitor) and our pregnant daughter in law whoe is having ultrasounds every 3 wks and echo on the fetus next week. My family has so much to be grateful for especially this year. Have a wonderful holiday, I so love the mountains.
Susan V NC
Am glad you finally have a set appointment so you can find out what's happening and how to treat it! Even though you have a lot to do for Thanksgiving preparation, please don't overdo and do let others help you. Sometimes we try to be superwomen and then we suffer for it. Lots of blessings all around this Thanksgiving.
I had only just written hoping all was going well and the next thing I saw was your entry about how much pain you were in. Talk about ups and downs! Having beent through so much I can certainly see where the fear and disappointment came from. It's great to hear things are calming down but still, you definitely do want to get to the bottom of what is going on and hopefully successfully rule out heart. Chin up and keep us posted.
Hey Diane: Enjoyed reading your journal. I am going in on November 23 for aortic valve surgery. I need a tooth pulled (tomorrow) and I woke up today with swollen lymph glands. I think its the stress of the surgery mostly. Anyway I have gained a lot of inspiration from your posts and wish you Gods speed in your recovery. JoAnne
Damn Dianna, that does not sound like a pinched nerve. Are you having any night sweats or splinter lessions in you nails? Have you seen an infectious disease doctor? Also you need to make sure they are doing two sets of cultures from two different sites at least 30 minutes apart and they need to keep them for up to five days. Also this may sound nutty but has anyone talked to you about and Colon or Stomach problems? Please feel better soon Dianna. Your words of encouragement have been so important to me and you deserve to get beyond this. Let me know if you need anything.
That is very upsetting to hear about the latest issue you are having. and yes, the fever is perplexing.
Good luck getting to the bottom of it and follow your gut. You know your body and when something isn't right.....
that's great that you finished rehab, but I can see where you would miss it. I've heard nothing but great things from everyone who participated in a program like that....like a special group/club to which only certain
people can belong!
Good luck with the latest....you'll figure it out.
Don't have my surgery date yet, but had a consult in NY and have decided to have the procedure done there. Not much of a traveler, so I decided against pursuing the Cleveland Clinic. The surgery wll probaby be in the next month and Cleveland in the winter with holiday travel issues just made me a nervous wreck!! Since I am in NJ, this will be more workable.
So sorry to hear you had another episode. As I wrote you previously, I had one similar episode early in my recovery, but no fever. It never happened again, so with
Your repeat episode you need answers. Wishing you the best...keep us posted.
Oh my gosh Diana, again you poor thing. Be persistent in getting to the bottom, I know easier said than done when you do not feel well and getting frustrated, hang in there. I don't know if you have looked at my posting, setback inpatient after the L arm pain that I had from surgery was being treated by anestheiologist with nerve blocks and because I am 5' and 104 lbs when needle inserted with steroid needle punctured my L lung, so now I am back @ home with home health care with a partially collapsed lung as they were able to aspirate most of the air but my INR went from 3.1 at admission to withholding Coumadin for 2 days to 4.9 now it is 1.7 to 1.9 this last week with frustration galore. I am so over this, that physically knocked me back for weeks no rehab for a few wks etc. I sooo feel for you, keep me posted.
Susan V NC
So sorry to read this last post. Yes, you need to get to the bottom of this and seems what your doctor says makes sense regarding the fever, etc. I pray it is something easily diagnosed and treatable. Now that you finished rehab you might want to try the walking video I wrote about. In 3 session this week I did 10 miles and would not have done that walking outside and with the increased heart rate it produced.
Dropping by to say "hi" and hoping this finds you well. I haven't written on the journal much lately but am still keeping up-to-date on the journals of my friends here. I keep each of you in my prayers. You sound as if you have returned to your life and putting surgery behind you. Good luck.
Thanks for responding to my question regarding the ross procedure....hmmmm, very interesting about the re-do's. I will definitely do my research on this. Yes, Adam actually got in touch as well and directed me to some other websites that have more info on the subject...good suggestion. Hope you are feeling better each day!
Thanks again, Nancy H.
Thank you so much for reaching out and welcoming me to the journal. I am so blown away by the support, warmth, and sincere interest in my situation that I have experienced so far!!! Everyone has been so wonderful in offering to help me understand what I am getting into and putting me at ease that it will be ok. I am not expecting it to be all roses, so when I read some of the stories of the bad days, it reminds me that I really have to set my mind that I will need to fight for a good outcome which is good preparation. I will definitely keep you posted on my progress.
Diana, thank you so much for posting in my guestbook. The words of encouragement from complete strangers is the best part of buying Adam's book and finding this site! Thank you again for your kind words, I am sure you won't let this latest setback get you down. Keep smiling!
I was away when you wrote your last entry. By now hope you are back to 100%. Seems the small things we didn't worry too much about before surgery take on a whole new dimension after surgery. Hopefully it is clear sailing going forward!!!!!
My word! You have had more than your share of medical problems! Have you had flu shots before? I don't understand why you would have had such a reaction. I just want to wish you smooth sailing from here on out.
At five months post op, I have completed rehab and am feeling great.
Mary Ann Marko
Diana: Thank you and God Bless you for sending me messages of encouragement. I am so very scared. I have imagined everything and I just pray things go well. You have given me some wonderful thoughts to concentrate on. I hope you continue to do well. I wish you the best of everything. Your pictures are beautiful. Take care, Sharon Harsh
Hi Diana! I am a new patient. My surgery is next Wed 10/13 in Pittsburgh PA. I was reading your info to get familiar with things. I really hope you are feeling better. You look great and I hope things are really progressing well for you. You will be in my thoughts and prayers. Your info is really interesting and a bit enlightening. I hope it is okay that I read the entry. It really helps to prepare for some of this. I wish you nothing but God's grace & wonderful thoughts and prayers from here on out! Sharon Harsh
Hi Diana I am so sorry you went through that scare! I have always been one to say better safe than sorry and I am so glad the hosp and Dr were so through and kept you with all the tests and observation. You are always so upbeat and encouraging.