Very concerned mom of MVP 20y/o son

[Joanie]

I am new to this forum. My name is Joanie. My son is 20y/o and was diagnosed with Bacterial Endocarditis in July of this year. He had MVR last week. The week before that he had brain surgery to clip an anyeursm called "Micotic" due to the vegetations that formed on his valve traveling to his brain. The surgeon decided on a biologic valve "cow" valve. Matt is immature and we did not expect him to take care of himself seriously at his age. I am very fearful of another infection at this point. He is on Vancomycin for four weeks post-op because he ran a fever post-op and the doctor did not want to take any chances on re-infection of the new valve. I just needed to share our story. Thanks---if you guys pray-please pray for Matt.

 

[geebee]

Joanie,

Welcome to our family. Your son has certainly had his share of problems this year. I am glad he is through with his surgeries and I hope his recovery is going well.

It is very common to run fevers after OHS but it is good that his doctors have him on Vancomycin. It is a powerful drug and sure to keep the germs at bay.

You will find the vast majority of us do pray and I will add Matt to my prayer list.

Please stay in touch and let us know how he is doing (and how are you, BTW)???

 

[Joanie]

from joanie

from joanie

I am at home for the first time in a long time. I have made University of Tennessee Hospital my home since August 25th. I wanted to ask if there are any willing to write letters of encouragement, or teaching about taking care of yourself, to Matt? He is afraid to take a shower due to his scars on his chest and he is still in alot of pain. If any are willing to do this you can email me and I will give address of Matt. He is still in the hospital and they have a website that you can log onto and write. The auxillary will give the letter to him. Thanks for caring, joanie

 

[Natanni]

Bacterial Endocarditis

Bacterial Endocarditis

Joanie,

My husband (34 yrs, known heart murmer, biscupid AV) had a cardiac cath in June of 2005, and came down with bacterial endocarditis in July also. He was at the Mayo for 1 wk, and came home with a PICC line and IV Rocephin for 5 wks afterward. It a little unclear as to when his valve went from mod to mod-severe, but he was getting close to having his valve replaced around the time of the cardiac cath. The one thing that were were told while in the hospital from the BE, is that once a person has had this, they are in a more unique situation than a biscupid valver or artificial vavler--they may even be more predisposed to a recurrance. Prior to my husband's cath, we asked about medicating with antiotics propholatically, and they said no, not necessary. The infection control team working on my husband after the BE diagnosis said from now one, any deep venous puncture will require meds. Husband is now having his valve replaced next week (Sept 29!!), and I was actually wondering if he would come home with a PICC line again, just in case.

Did they do cultures on Matt prior to his surgery? Nathan had two wks of cultures after his PICC line was removed and so far, all clear.

Good luck with Matt, you have all of our good thoughts. Take care, and keep us posted.



and was diagnosed with Bacterial Endocarditis in July of this year. He had MVR last week. The week before that he had brain surgery to clip an anyeursm called "Micotic" due to the vegetations that formed on his valve traveling to his brain. The surgeon decided on a biologic valve "cow" valve. Matt is immature and we did not expect him to take care of himself seriously at his age. I am very fearful of another infection at this point. He is on Vancomycin for four weeks post-op because he ran a fever post-op and the doctor did not want to take any chances on re-infection of the new valve. I just needed to share our story. Thanks---if you guys pray-please pray for Matt.[/QUOTE]

 

[cocoalab]

Joanie,
I am mom to a little younger son (16 in Nov). I am sorry you have had to go through this and Matt. Andrew also has a bovine mitral valve but it is his tricuspid valve. He just got it this summer.

BE is something that is always in the back of my mind. I hope Matthew will take it seriously and take care of himself. I am sure you will be keeping your eye on him as well. How has he done through all his surgeries? Brain surgery and open heart are big things for a young man to have to go through.

I will very definately keep him in my prayers, and you. I have had many prayers answered just in regards to my son this past summer. I would be glad to write your son as well if you want you can leave the address on my personal messages here.

Take care and stay in touch.

I am new to this forum. My name is Joanie. My son is 20y/o and was diagnosed with Bacterial Endocarditis in July of this year. He had MVR last week. The week before that he had brain surgery to clip an anyeursm called "Micotic" due to the vegetations that formed on his valve traveling to his brain. The surgeon decided on a biologic valve "cow" valve. Matt is immature and we did not expect him to take care of himself seriously at his age. I am very fearful of another infection at this point. He is on Vancomycin for four weeks post-op because he ran a fever post-op and the doctor did not want to take any chances on re-infection of the new valve. I just needed to share our story. Thanks---if you guys pray-please pray for Matt.

 

[liza]

Hi Joanie!
Welcome to VR.com! I sent you an e-mail, but I'm not 100% if it worked, so I'll post a message too. I am 24 and have had bacterial endocarditis and mitral valve repair this past year. Please let me know if there is anything I can do to help! My e-mail address is [email protected]. Please take care and keep in touch!
Liza

 

[ALCapshaw2]

PAIN should be controlled for better healing. Are his nurses / doctors aware he is in pain?

What kind of pain is he experiencing?
Surgical pain should be controlled medically.
Muscular pain can be quickly and effectively releived by MASSAGE which I found to be FASTER and MORE EFFECTIVE than pain medications.

'AL Capshaw'

 

[nia]

Dear Joanie,

What your son just went through is very similar to what I went through a year and a half ago as a college junior. I was 21 at the time and got diagnosed with the BE, had two strokes and an emergency MVR with a bovine valve, and a month-long rehab during which they put me on three antibiotics including vancomycin. I also ran some fever about two weeks post-op, which was due more to my allergic reaction against penicillin, but in the end things worked out fine. A brain angiogram taken after rehab ruled out any micotic aneurysms, so I did not have a brain surgery. I took one semester off, and then went back to school.

I really understand your concern about your son possibly contracting the BE again. That is one of my biggest fears with my condition, especially since I live in a dorm where at any given time, someone on the floor is bound to be sick or have strep throat, etc. Could the doctors figure out the exact cause of his infection? As the cause of my infection was never clear, I now worry about almost every single cuts and scratchy throats I get, but I?ve learned to manage my fears. Since all my medical needs must go through the school?s health services, finding a trustworthy primary care physician there was the most crucial point in managing my issues.
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As for the showers, I didn?t take one for about two weeks post op, and even after that, I was afraid to really scrub the area near the scar for fear of my chest splitting apart? I got a silk towel and gently scrubbed (or rather, dabbed) the area and that worked for me.

Please feel free to message me whenever ([email protected]), and please take care of yourself too.

 

[Lynlw]

I will keep Matt in my prayers

I will keep Matt in my prayers

My son Justin is 17 and just had his 4th OHS and got a bovine Pulmonary valve in May. he had BE when he was 11, but he was born w/ his heart problems.
I'm glad if you worry about Matt taking care of himself that he has a tissue valve so you don't have to deal w/ worrying about him taking his coumadin and testing. those were my concerns before Justin's surgery.is there anything you are really worrying about him doing or not doing that can cause problems? or just in general? if Matt talks on AIM email me and I'll give you Justin's screen name if you want
Natannie, I know some places to things differently, but since Justin's BE he's had a few caths, stents his heart surgery and 2 surgeries to put rods in an out of his brokemn arm and none of the octors or surgeons (in 3 different hospitals) thought he needed a picline post op, and I did ask. he just needs to premed for the dentist, but he always did that anyway, Lyn www.caringbridge.org/nj/justinw

 

[MSG Morrissey]

I will pray for Matt

 

[Guest]

Lyn,

What an excellent idea ... about the AIM screennames. If Justin, Matt, Andrew, Liza ... or anyone else, for that matter, wants to chat or exchange Emails (i.e. pen pal style) about their concerns/worries/etc., all you have to do is let me know....


Joanie,

Thoughts/prayers coming to you, your son and your family.....


Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"Heaven knows how long it's been since I felt so out of place" ... Garth Brooks ... 'Learning To Live Again'

 

[OldManEmu]

Joanie welcome aboard. I to had bacterial endocarditis and the doctors had no idea how I contracted it. After you have had bacterial endocarditis once you are more susceptible to contracting it again. I to am a little concerned that I may again become infected by no apparent cause. Other than premedicating as he would have been instructed to for dental work or medical procedures where the skin is to be broken there isn't much else you can do. Unless he was instructed otherwise your son would normally be able to have showered 3-4 days post surgery. Baths however are certainly out for a while. He should be able to dry the incision area with a gentle dab.
I am sending positive thoughts your way.

 

[gijanet]

Hi, Joanie!

Hi, Joanie!

Just wanted to welcome you to the group, but I am sorry that you are here, if you know what I mean. It appears that most of the valvers (or their parents) who are closer to Matt's age have already welcomed you, so my mission is done here! Except for the prayer part, and we will be happy to include Matt in ours. Many hugs. J.

 

[hensylee]

Joanie - welcome...

Do we pray? We have a prayer chain that wraps the world and you can be sure that your baby is part of it.

If there are those who don't want to write directly to him, perhaps we (members) can post here to you and you can forward, or print them out to take to him.

Hey, Matt - there's a big group of us who are thinking of you and sending prayers heavenward for your successful recovery. Little by little you will be able to do things like you did before surgery. Have trust in your medical team. This note is coming from an internet site board (called valvereplacement.com) and there are hundreds of members who have gone through the same surgery and are doing so well - back to normal lives again. We wish the same for you. Maybe you'd like to join in - if so, the net address is valvereplacement.com

Ann

 

[Joanie]

Matt's address and update on condition

Matt's address and update on condition

Hello all,

Sorry I have not been on this site to answer all of the wonderful thoughts, encouragement and welcomes. Matt is resistant to Vanco now and is running high fevers. He is now on Cipro, and Cubicin, and another one I think called AZT. I have been with him at the hospital. I want to take a chance and leave an address where Matt can be written to with encouragement and educational info about his condition. Thanks for all of your prayers and I will print the letters and take them to him. [email protected] thats my email address. Love joanie

 

[hensylee]

I sent one - who's next.

Ross when Iwent to reply here, it wanted my log in info??????!! Wha's up?

 

[geebee]

I sent a card via the hospital website.

Joanie, I hope you are doing OK.

 

[Mary]

Gina,
The hospital website is an excellent idea. I know the hospital is University of Tennesse, but do you mind PMing Matt's last name so I know who to send it to?
Mary

 

[geebee]

Gina,
The hospital website is an excellent idea. I know the hospital is University of Tennesse, but do you mind PMing Matt's last name so I know who to send it to?
Mary

Mary - sent you a PM.

 

[cocoalab]

Gina,
The hospital website is an excellent idea. I know the hospital is University of Tennesse, but do you mind PMing Matt's last name so I know who to send it to?
Mary

What is the University of Tennesee website addy?