New member

[Paula G]

Hi, I am another new member named Paula. I am also from North Carolina. I have been visiting this site for some time and decided today was a good day to join. I am not very computer literate so I am not really sure what threads, posts, etc. all mean.

But I do know what valve replacement surgery is all about since I had my bicusip aortic valve replaced a year ago today with a St. Jude Mechanical one. Looking back on it all now, I remember the tense weeks leading up to that big day, the feeling of being hit by a mack truck after surgery, and the eight weeks of recovery before I was able to go back to work. I was fortunate to have six months of cardiac rehab which helped greatly in regaining my strength. I certainly surpassed my pre-op stamina.

Unfortunately, there is a cloud hanging over this one year anniversary as I found out in May through a routine echo and then a TEE that my new valve is leaking by way of a loose suture. So far, my cardiologist in consultation with the surgeon has decided to keep a watch and wait attitude. In some ways, it feels like I am back at square one with the leaking valve. I am told it is hard to quantify, but I suspect it is not leaking near as bad as my original one. They will just be monitoring me every six months and measuring my left venticle. So much for life time warranties. I guess the valve is still great, but I must have not gotten the warranty on labor as well.

My internist says to concentrate on my hypertension and all the things I can do to help my heart. Otherwise, I am in good health. I went through the ordeal of having a colonoscopy in July. Just a routine procedure with days in the hospital on heprin(sp.) trying to get my INR down and back up. I had a polyp removed so I guess I needed to do it. Coumadin has not been much of an issue. But now I know it can be when I have anything else done.

I enjoy all of your comments. It is nice to have others experiences to relate to. I probably could have used some help when I found out about my leaking new valve. I think that hit me harder than the original shock of having open heart surgery. I know too much now.

Keep up the good work. I will be visiting.

Paula G.
St. Jude Mechanical Valve
08/21/01

 

[hensylee]

Someone else had a loose stitch but at the moment my pumphead won't let me recall who it was - Nancy, was it Joe? Someone will remember and stop in to offer words of wisdom, experience and encouragement.

Welcome to our home. God bless

 

[Nancy]

Hi Paula G-

Welcome to this terrific site. It's so nice to see so many new members.

I'm sorry that you have that leak, I can relate somewhat. My husband also sprung a leak in his fairly new mitral valve. They watched it for a while, but he unfortunately got very symptomatic. He had another surgery to stitch it up. It was done with the HeartPort method through his side. It was indeed a small leak. His heart is OK now.

Sometimes those small leaks can heal up in time. I hope that's the case for you. It's stressful to worry about it, but maybe all will be OK. It's good that you are not symptomatic.

Take care and be well. Hope to see you here often.

 

[RobThatsMe]

Hi Paula,

Welcome to the site. So glad you posted, and so sorry to hear of your ordeal. The valve may have a warrenty, but the surgeon doesn't. Hmmmm... well, I always wondered how I would collect my refund if my valve fails.. <smile>

Seriously, I hope your doctors come up with a plan of action that will satisty you, and bring you back to full health. You have come into a family of friends here that will provide you with the comfort and support to deal with whatever obsticles face you in the future. That goes for everyone here. This is a wonderful place to talk and learn.

Hope to see you on here often, learning and teaching, as we all do.

Wishing you good health,

Rob

 

[Paula G]

Thank you all (that's southern) for the encouragement. I hope I can be of service to others. During the past year, I have not felt I have had a lot to give. Just keeping up has been all I could do. I am in the social work field and deal all day long with persons in crisis. At the end of the day, I am spent. I never know whether I am tired because of my valve, or it is just my workload. Visiting here may give me some great insights.

Thanks again.

Paula G
St. Jude Mechanical Aortic Valve
08/21/01

 

[ALCapshaw]

Welcome Paula. Your post indicates you've gained strength and confidence from your experience. It's good to see you retained a sense of humor. That goes a long way towards maintaining a positive attitude.

Having had two heart surgeries (CABG and AVR), I can confirm that the first time around you're afraid of the unknown. The second time around, you are afraid of the known! If / when you need to have your leak repaired, you will receive a LOT of support from VR.com With your great attitude, I'm sure you will do fine whatever is required.

Best wishes for continued improvement.

'AL'

 

[Christina]

Welcome Paula G.

Welcome Paula G.

Hello Paula G,

Welcome to our family of valvies. Make yourselves at home, and consider yourselves amongst friends.
From your post I also can tell that you've learned from your first surgery, you don't sound scared anymore. I say that to anyone that has to have surgery: The more you know, the less you fear. And it is so true!
I had two AVR surgeries within 11 days in 2000 because of congenital aortic stenosis. Second time around was a screw-up by the cadiologist office. (Read my story for more details if you like) The second time around I also was a lot calmer than the first time.
I have a St. Jude's mechanical like you and I am glad. Yes, there still is no guarantee, but I was not given another option. My surgeon told me that I should go with the mechanical, because "you don't want to do this surgery too often". I agreed with him. Once was enough for me. Little did I know that I'd have to do it a second time 11 days later.
I am on Coumadin and it took me quite a while to get stabalized, but that had to do a lot with the doctor I was seeing. I switched doctors and I bought a Protime machine. I do my own Protime testing already for the past 18 months. It is so KEWL! No more labs and no more arm pricks. YEAH!!!! Saving my veins for later!
Well, I hope you like it here.
Wishing you the very best! Come and see us often!


Christina
Tucson Medical Center, Tucson, AZ.
St. Jude's Mechanical
Dr. Gulshan Sethi

 

[Mb]

Welcome to this site.

My husband had two St. Jude valves implanted in October 2001.
This past April, after a routine echo, performed due to a slower than average recovery period, they found his tricuspid valve has now developed a severe leak, and the new mitral valve is leaking moderately. (Probably from the tricuspid valve). He is now in right side heart failure. So, we know the disappointment that accompanies hearing such news, so short a time after the surgery. It is extremely frustrating....and scarey.

This site has gotten SO big in the 13 months that I have been a member (plus or minus), and the GREAT thing about it, is that there are so many of us now, that no matter what issue you have, there are a few others in the same boat. It always helps to hear another opinion/situation/advice. This site has been so good for me emotionally.........I feel like I have this underpinning to rest on, and build that structure of strength and hope. I hope you find the same.

Welcome again, friend.

Marybeth

 

[John Cochran]

Welcome Paula!
I'm sure you're feeling what we all fear after these surgeries...that something might go wrong requiring yet more surgery. Al's comment was so accurrate when he said the first time you fear the unknown, but the second time you fear the known.

In your case, though, I suspect that IF you need a surgical correction that it will be far easier and simpler than the implantation of the valve. Prior to my own AVR, I rigorously researched the Heartport minimally invasive procedure (which Nancy's husband Joe had) but found it probably wouldn't work well for the homograft valve I wanted. But for a repair it might be just the ticket. If you're not familiar with this procedure, it involves a small incision (less than 3") horizontally between the ribs, and under the breast. The sternum is not involved at all, and patients seem to recover very quickly with none of the discomfort of a sternotomy. Not all hospitals offer this option, but if I had to have a "fix" I'd certainly pursue a hospital/surgeon that does.

Best wishes,
John

 

[sylviayasgur]

hi paula!
welcome to this site. i'm glad you finally joined us. everyone here is so supportive, informative and helpful in every way.
i'm so sorry to hear about your valve leaking. hopefully your docs will come up with a strong plan of action that would involve the least invasive type of surgery. please keep us up to date on what they say.
stay well, sylvia

 

[Zipper]

Hi Paula,

You can tell by the welcome you've received what a great group you've joined. I learn everyday from everyone here! Christine and I always say 'KEWL' when referring to home testing! It sure is and I hope you check into it. I read more than post but just wanted to join in welcoming you.

Salud,

Zipper *~*

 

[Paula G]

Home Testing

Home Testing

Again, thanks everyone for the great hello. Zipper, I have mentioned several times to my internist about home testing, and she doesn't even want to hear about it. I had thought about taking the literature to her but I don't think she would even read it. I like the convenience and the idea of having a really more up to date reading. I had not really thought much about the coumadin. Once we got my levels stable, I just went in once a month with no change for 6 months. Then, I had the colonoscopy in July and had to start all over again. It took a long time to get my levels back to at least 2.5. Then she had me wait 3 weeks for testing and it was 3.7 last week, too high. So now I am back to two weeks. I have moved in the past few months some 40+ miles from my internist's office in Charlotte. I work in Charlotte but live now in a outlying county. If any of you are familiar with Charlotte, the traffic is horrendous and getting worse.

Anyway, I like my internist. She got me through some rough spots after my surgery last year. I had to go back in hospital 3 weeks after surgery for blood transfusions. Couldn't get my hemoglobin back up. Guess, I was 2 pints low. Anyway,I have established a good rapport with my doctor. She knows me. With all the big practices around here, that in itself is a feat. We have a small hospital here in Lincolnton where I now live. I am debating finding a doctor here. But I also debate looking for work closer to home. It has been a great time of transition having moved after 25 years in the same house. I am struggling with the 30+ mile drive to work each morning. As you can see, lots of change in my life this past year not all having to do with my heart. At least, not all having to do with my heart muscle.

I am signing off so I can read some other posts.

Paula G.
St. Jude AVR
08/21/01

 

[Blanche]

Paula:

You seem to be a perfect candidate for home monitorng, especially since you live so far from the lab. Don't give up on your internist yet. My husband's internist was very skeptical and told us in no uncertain terms that he did not want us to use a monitor. In our favor was the fact that we already had the ProTime machine, which was prescribed by our cardiologist. It took alot of patience, alot of articles, many personal testimonials from members of this board, and 6 months to get the internist to agree to let us use the machine. Albert tests every week for 5 weeks then goes to the lab the 6th. week.

There is an excellent article, posted by Kristy, on the Coumadin forum, entitled "Anticoagulation Symposium." In this article, 10 distinguished cardiac surgeons and cardiologists talk extensively about home monitoring. These are 10 experts from prestigious hospitals and medical schools who advocate the use of home monitoring.

You might want to take a copy of this to your internist. I'm taking a copy to my husband's. I can imagine the look on his face when I say, "Hey, Dr. B. There's a professor from Harvard Medical school in this article who says that he'd use a home monitor, FOR SURE, if he had to take coumadin!" And, I will add, "Does that make you feel better about your decision to let Albert monitor at home?" Internists do so much, they are so busy. Sometimes new things are hard to consider.

Take care of yourself.
Blanche