Thanks for the update. Thank God Danny is young and generally healthy I imagine that's why he's finally getting through this. The kidney issue should resolve itself. So glad you have a joyous event to look forward to and Danny will have a great time at his sister's wedding. After the wedding, hope you'll take a deep breath Mary and put your feet up for a well deserved rest.
I'm so happy to hear Danny is doing so well. I know this has been a very long a difficult road for you both. The trick now is to keep Danny following doctors orders. It's not easy for any of us, especially a 20 year old.
Message to Jessica,
You were too young to remember me but I am your Mom's cousin, Mary (Danny's Mom). I used to babysit you and Danny together many years ago. This is not Danny's regular e-mail, his e-mail address is firstname.lastname@example.org, you can reach him there. He is also on facebook, if you have an account. It is so nice that you two want to keep in touch after all these years. Congratulations on getting Married. I wish you all the best.
hey danny! its your cousin Jessica! i guess my mom talked to your mom at some wedding thing on sunday and told me you would look me up on facebook but i couldn't sleep so here i am lol. send me an email and ill give you my cell # so we can chat :P
Can you give us an update on how Danny is doing now that it's been a month since his second surgery. Having age and general good health should be a bonus. Only good thoughts going to all of you. Let us know, please.
Mary and Danny sorry for that last post I'm on my IPad and didn't get a chance to edit my comments. I pushed submit too soon. If you guys have ANY questions for me you can email me as well at email@example.com
Hello from a cold snowy Kentucky. If I didn't know better I would say I moved to MIchigan. Your questions about the antibiotics are good ones. While I did not have any rashes thank goodness the Vanco did cause a mild case of red-man syndrome. Basically my face turned red and I felt hot in my ears and cheeks but no fever. I am not sure what the bug Danny has but I was on at one point Rocephin, Vanco and finally Nafcillin. My side effects varied. I initially had no side effects but a few weeks in I lost my appetite and developed some gastro issues which to this day have not really cleared completely. I Sm sure you know this but ever good germ in Dan's body is being killed off. I don't want to get to clinical here but I came down with Thrush and a few other fungal infections. All of them were treated with antifungals rinses and creams but the one thing that helped me out was eating yogurt with live cultures. Seriously get some good Greek yogurt and maybe some Dan-active and eat it. Also and I can not stress this enough keep that port and bandage clean. Home health nurses are good people but the whole rub some hand sanitizer on the hand and then mess with your PICC line doesn't work. Politely ask them to wash their hands and if they don't ask them to leave. The other thing you may have figured out by know is it is hard to shower with this. I showered using Gladd Press and Seal wrap and taped the top and bottom of it after I wrapped my arm. Its cheap and seemed to work well and a roll lasted a month. Finally one dirty secret of infectious disease medicine that most doctors won't tell you is that infectious disease doctors are often in that field for a reason other then they like germs. There are sone real stinker-Roos out there who have the bedside manner of a paper-bag. If you have ANY communication issues get another doctor. Blood tests and cultures are all basically the same but they way and how they are done makes a world of difference. I had to fire the one i had in the hospital. He was a nice enough guy but he made some pretty big errors. The other thing to keep in mind is no matter how good your cardiologist is he IS NOT an infectious disease doctor. Nobody want to be a pain in the arse patient but this is serious and Danny has to know this fight will set the stage for him down the line which mean you get the best players on the team. I also suggest you get to know the pharmacist well. They are the ones I found who have the most training in dealing with what doses and drugs work best on which germ. Finally Mary and Dan stay as active as you can. Dan your age is an advantage and the fact you are in great shape will help you but make sure you limit you exposure to sick people and places where germz thrive.
Danny & Mary
Now that the fever has subsided after 24 hours I pray that a complete recovery will be next. Being young and healthy will mean a lot in the next few months. All this was unexpected and so stressfull but I know you will get through it and be stronger. Try to look forward, not backwards, it will get better. Prayers from FL.
I hope you are doing better. Your post breaks my heart as I had endocarditis caused by strep viridens and it ate my AV. I followed your posts before my AVR surgery and just came on here to check in and saw the news.
I was sick for a month before I got the diagnosis. I had a PICC line in left arm in July and August and again after my surgery in September after I found out I had staph in my blood, so in went a Groshong line. I can tell you I got through it thus far but I know first hand how scary it is and you are both in my prayers.
Mary I would advise you to be very diligent about keeping the ports clean. I had some home health nurses who weren't and I frankly sent them away. Remember that PICC line is a direct line to the valve. Also if you can get a consult at Cleveland Clinic DO IT!
Danny hang in there buddy. You don't know me but I want you to know you are in my prayers. This is an insidious infection but BELIEVE you will beat it and you will. If you guys have any questions or need some tips on how to deal with the antibiotics let me know. The one thing you have to do is make sure you eat yogurt to protect your guts. I didn't and came down with C-Diff and went back in six weeks after with a form of food poisoning becasue the good flora were out of balance.
January 11, 20ll
Hope you are well soon Danny. You are so sweet to be going through all of this trouble. God will take care of you though, I'm sure of that. You have many people praying for you, some you don't even know.
Love you so much, Aunt Jackie
There's nothing worse to a mother than seeing her child's health in distress. All of us are praying for Danny AND for you to help you through this. Please keep us posted. We're all pulling for you.
Thank you for thinking of me as a prayer warrior for Danny and asking for my prayers in my guestbook. Absolutely will do so. Have often thought of Danny and always assume no news is good news and knew he was back tossing that basketball. Know how that concerned you in the early days post op. Hope others will chime in as Pete did and give you hope that the infection will clear up without damage to Danny's new valve. You are all in my prayers and please keep us posted.
I don't have a lot to add, but I knew a young woman (around 25 yrs. old) who had a mitral valve problem and developed endocartitis after some kind of gynecological surgery. She was hospitaled and treated for it and, within a few weeks, recovered and was back at work. For the remaining years I worked with her she was just fine.
I wish your son all the best for a speedy recovery. And I wish you peace and calm. As someone looking at heart valve surgery, I know how anxiety-producing this can be.
Mary I enjoyed your note to me. I really know how we never stop worrying about our children ours are 35,33,31,28 with a daughter and son inlaw, and 2 grandchildren in the mix to worry about. My son is doing well a Secret Service Agent, married and thinking of starting his family. Because of his job this past summer he was @ U of M and one of Dr McDonald Dick's nurses was in the meeting he was involved in and he and Dr Dick actually corresponded via email. He remembered us even to this day and was so gald to hear from my son. There are concerns of course of any children inheriting congenital heart issues as it is prevelant on my biological fathers family. Hang in there and I am sure your son as mine has a deeper apprecitaion for life itself. Keep in touch
Glad Danny has such an attentive doctor and am sure she will take care of this latest "problem". Perhaps when Danny is older the reality of his amazing surgery and recovery will mean more to him. Guess you need to be thankful he is so eager to get on with his life. Some day he will also realize what an awesome mother he has!!! Glad the other problems are working out.
I assume Danny lives at home while he attends college so you are aware of how much basketball he plays? Sounds like the doctor's advice got through to him as he only played one hour. Sounds like he is addicted to basketball but am sure you are pleased it's not an addiction to something else. He just needs to gain some maturity and realize his health is more important than basketball. Hopefully that will happen soon, in the meantime he will continue to heal and do well. Hope your daughter and grandchild are doing okay. You are a great mom.
I am the father of 2 young adults myself. I can apprecitate what you are going through. My prayers are with you and your son. Hang in there. I have been getting your journal from the beginning. I had my aortic valve replaced 5 months ago and have been folowing a few people to see how they have been doing. Keep the faith. Your son is going to be okay.
Since I am relatively new to HVJ I had to catch up with your son's story
My son and I both had our first surgeries @ U of M Dr Bove did my sons, almost went back this time for my third to Dr Bolling but stayed locally here in NC. We had lived in Traverse City at the time of the others. My son was 9 @ the time and although it was only a hole in his heart I was a wreck as I had just had my first open heart 6 months prior. Hang in there he is so lucky to have a Mom like you
This is my first time reading Danny's story. I have a 20 yr old son and I can't even imagine what you must go through with everything. I am so happy to hear that his tests came back good and he is still on his road to recovery.Hope you are able to enjoy the rest of the weekend and get some relaxation in.
My prayers are with you,
Well that episode must have added a few more grey hairs! It's regretful that Danny would have to lay in bed thinking so many negative thoughts but when you are feeling the pain he really did have something to worry about. He should soon be on the mend but he's still in my prayers anyway. Enjoy labor day weekend as all returns to normal.
It just doesn't end, does it? I'm glad it turned out to be one of the lesser evils. I had pleuresy a while back (after surgery) which is similar - an inflamation of the lining around the lungs (vs. the heart). They had to rule our a blood clot in the lung, etc. so it was tense for a day or so. I was lucky because it went away pretty quickly although I still get pangs from time to time (just last night as a matter of fact . . .) I hope Danny's feeling better and able to go to classes. And Mary? A glass of wine is in order! You're a good mom!
I wished I could say something about the heart rhythm but honestly, I`ve just not heard that term. I believe the doctors there give out more detailed information than we get here - too bad they didn`t give out the explanations as well. I have missed, double and triple heart beats which I`m told are benign and that is as much explanation as I`m given. Danny might just have to repeat the test. Try not to dwell on the worry part though and I know as a mother I would agree but worry anyway! It`s what we do best. It`s still soon after surgery and it does take time, sometimes months to let the heart find it`s way back to normal. Hang in there.
I am so happy that your dear son has come through his surgery so very well and now hopefully you can begin to let your guard down. Obviously he is doing amazingly well. Eventually you all will get comfortable enough to put this event in the past and move forward.
What a great update. Hard to remember back to the days before surgery when you were terrified. Danny's age and overall health is certainly on Danny's side. Shooting hoops must make him feel back to normal again. Thanks for keeping us up to date.
When you look back at your pre-op postings it gives you shivers at knowing what was coming and here you are now knowing Danny is well on the way to a full recovery. I'm really happy for you and Danny. Like Fran says though, don't be in to much of a hurry to get too physical. As happy as we are to move forward, it's humbling to be able to look back and remember where you came from.
I'm happy Mary that your son is well and getting better. You've done your job well.
Hi Danny & Mary
I guess my thoughts would be to do the strengthening exercises and wait to see the cardio before shooting baskets. But it's pretty awesome to think that you feel so great that you want to shoot baskets. As a valve person and retired nurse I might think a couple of weeks of waiting shouldn't matter when you have years of basket throwing ahead of you!!You are the gold standard of valve surgery recovery. Prayers have been answered.
Hi Mary & Danny. Thanks, Mary, for the encouraging note in my guestbook. I'm glad to read that Danny is doing so well. I'll be curious to see when I begin my recovery how the neck & shoulder is affected. I hope you continue to stay on track with a great recovery, Danny. Take care, Joy Vera
Thanks for the note, and yes I am still to this day experiencing shoulder aches. This is very normal and all part of the healing process. Although Danny may feel great, DO NOT rush anything. I had a few days where I felt great and overdid it, but the next day payed for it in pain. Walking is good for him, but I wouldn't recommend anything more than that. Within the first couple weeks of my surgery, I walked for 5 minutes, 4 times a day. It helps to keep track of progress if he wants to go a little longer. The key is to have a healthy safe heart rate. Better to be safe than sorry, even if he thinks he is not working hard enough, his heart is getting some benefit. I started rehab 3 weeks post-op by 10 minutes on the treadmill and 10 minutes on a recumbent bike. Today, I am doing 16 minutes on each at rehab and walking 1 mile on my own at home (I am now 6 weeks post-op). I will always HIGHLY recommend cardiac rehab to anyone because it allows you to safely increase endurance as well as gain encouragement from the staff and other patients. I think it was at about 4 weeks that I could start taking Advil, and that helps me with my shoulder aches. Before that, I took pain killers or Tylenol. I hope all of this helps and as always, I'm happy to answer any of your questions.
Mary, thank you for that very generous note in my guestbook. I could just feel your emotions of having Danny undergo such a surgery. No parent likes to see their child suffer and often we find out our fears were all for naught as the children are much more resilient than we give them credit for.
In regards to pain that Danny is experiencing I want him to know he'll have pain in places that will just leave him wondering how on earth that aches when it is so far from the surgical site. I swear they all but turn us inside out. Shoulder, back, neck, arm pain is totally normal and to be expected. If Danny is off his surgical pain meds, just pop a Tylenol when it bothers him. Eventually the pain will subside, some faster than others. Don't let this worry you or him.
I'm so glad Danny is recovering and you are getting some much needed rest. Worry alone takes a lot out of you so you need to get some "me" time and just try and relax and perhaps get out of the house and be you.