Heart Valve problems

[RonaldHeart]

Here's the latest. I am typing this for my dad, Ronald, since he is in the hospital as of this morning. He fell down when he blacked out briefly and was unable to get himself up from the floor. My mother and I were unable to lift him, so we called 911. Due to the severity of his heart problem, he was brought to the ER and tests were done and we spoke to the doctor on call for my father's cardiologist. What we know now is that the surgery will have to take place in the next couple of days. We can't wait until his appointment scheduled next month on the 8th. The surgeon will meet with my father Saturday and discuss the procedure with him then and tell him which day to expect the surgery. His aortic and microvalve are the problem with one leaking and the other with an opening narrower than the width of a pencil. Right now he's resting in the cardiac unit of our local hospital. The surgery should be Sunday or Monday I would guess. We are certainly hoping and praying that all will go well for him.

 

[Karlynn]

Our prayers are with your Father and your family. Please keep us informed on his situation. Sometimes we plan and plan and then find that the decisions are taken out our hands. We'll be hoping for the best possible outcome.

Karlynn

 

[Nancy]

Dear Ronald's daughter-

I'm so sorry to hear of your father's hospitalization. Please keep us informed on what is happening.

I would like to send him my very best wishes for the most successful surgery. It is something that he's needed for a long time.

He'll be in my thoughts and prayers.

Please do come into the site yourself and get some support for this very stressful time.

Take care,

 

[fyrfytr]

Would you let you father know that all of you are in my thoughts and prayers. I hope you will keep us posted with what is going on with your father.
Take Care

Dave
__________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical

 

[RickKiem]

Tell your dad that their are alot of people praying for him right now. Please let us know what's going on when you get a chance.

Rick

 

[bvdr]

Thank-you so much for letting us know what is going on with your dad. Your family is in my prayers.

 

[fisher6476]

Let me add my prayers for your father and your family. Hopefully we'll find a method to all this. Please try to keep us informed but don't forget to take care of yourself.
Steve

 

[RonaldHeart]

Here is another update about my father.

He went into the hospital on Friday morning. My mother and I stayed with him all day and left that evening with an uneasy feeling about how he was doing. He said he didn't feel right. At home he had been hooked up to the oxygen machine at number 2. At the hospital they had him up to number 5. He was still having great difficulty breathing. Saturday morning at 2:00 AM the hospital called. I was expecting the worst with a call at that hour. The nurse said he was still alive, but he had a very rough night. They all felt it was best to move him the cardiac ICU and that is where he still is. Saturday was not a good day for him. He seemed kind of out of it, his color wasn't right, he was hooked up to this special oxygen tank that fits a mask tightly over the face, and he wasn't eating. He's been seen now by 3 cardiologists, his primary care doctor, a lung specialist, and his surgeon.

As of right now, they haven't done the surgery and it looks like they will do it in about one week. The reason for the delay is that his body isn't ready for surgery. He's been on a blood thinning drug, Plavix, that had to be stopped. That needs to get out of his system. Also, his breathing hasn't been stabilized. And his blood pressure is low. He's been going between 60/40 to 80/something (I'm not sure what). The doctors are trying all sorts of new medicines to try to help him.

As of today he actually seems to be doing better. His color was back and he was alert. He was back on the normal oxygen tube, but he's at number 6 now. They've put a central line in him since he's been stabbed for blood tests so many times and they keep having a hard time finding where else they can poke him. He's not eating much yet and that has us concerned. The surgeon is actually thinking that my dad needs another angiogram and echo test before he does the valve surgery. We aren't sure when those tests will be done.

The phone rang early again this morning, this time at 6:30 AM. My dad had asked the nurse to call. The reason for his call was to ask us to bring a special pillow to him from home. He had to call us at 6:30 to tell us that! As I said, he was doing much better today. We are relieved about that. My mother and I are still very stressed out and not sleeping well. We don't know what to expect next with my dad. We'll go up to see him again tomorrow. Hopefully he'll have a good night tonight.

When I know more, I'll post an update.

Lastly, I would like to thank you all for your support and prayers. That means so much. This has been rough on all of us and we are definitely leaning heavily on prayers right now to help us through. Thanks for all the advice along the way. This is a great web site to share this kind of information with one another.

 

[Nancy]

Dear Ronald-

I'm glad to see your report, although I know things look very serious at this time. It's encouraging that your dad seems to be improving.

Please always remember that where there's life, there's hope. Your dad is no doubt, fighting very hard at this point, and he'll need encouragement to keep up this fight. My husband has been in this kind of serious condition several times. He's a fighter and it's probably the only thing that kept him going.

The doctors are trying to stabilize your dad so his surgery will be less risky, and that's a good thing. The ICU is the very best place to get the kind of intensive care that he needs at this time. I think my husband has worn out several beds in ICUs in a couple of hospitals.

Your dad and your family will be in my thoughts and prayers. Please keep us updated when you can.

Take care,

 

[fisher6476]

Perhaps if there is good news here it is that he is in the hosital now under the dierct care of proffessionals. While in th grand scheme of things, as individual we sometimes feel helpless, as a group we can pray to God that the outcome of this will be satifactory. Take courage in the fact that we here at VR.Com are praying hard for your dad and your family,
Steve

 

[catwoman]

For Ronald's family:

My husband and I have Ronald and all your family in our prayers.

 

[Georgia]

my best wishes and prayers

my best wishes and prayers

Ronald, Hang in there - this is an awful way to end the year, but now that you're getting the attention you need I reckon things are looking up.

Family, you hang in there, too - let the professionals do their thing. Ronald's where he belongs. There's so much that can be done to prop up a damaged heart that it's amazing. And once he gets those valves replaced he'll never look back.

All of my good thoughts and prayers are with you folks as you work your way through these long, cold nights.

 

[RonaldHeart]

In some ways it does appear my dad is doing better. They've eliminated some of the medicines and IV fluids he was taking, and he's on a lower level of oxygen. He certainly has gotten his appetite back! The swelling in his legs has improved dramatically. So these are all good things that are going on.

Then there was the test they did today. I'm not sure what the name of it is, but they put this scope down his esophagus and were able to see the exact condition of his heart valves. This is a procedure they were able to do in my dad's hospital room. The test itself went very well, but.... the results really have us wondering what to do now.

The cardiologist said one valve is calcified almost shut and another one has so much calcification around it that it isn't able to open and close properly. Well, we actually knew this basically, but what the doctor said next was what we were not expecting. He said the results showed him the seriousness of the problem and that he's worried that even if they did the surgery and replaced the valves that the overall condition of the heart muscle might be so weak that my dad would be back to where he was before - being weak, having difficulty walking around, and basically acting like the surgery had never taken place.

Also, the cardiologist said he really wonders if my dad could survive the surgery. He didn't want to give us a number for the odds he would have of survival, but he said the number wouldn't be high. There is a high likelihood he would not make it.

He said that what we have to do now is to decide if we want to risk the surgery or do we want to just keep my dad comfortable & wait for the inevitable. After what this doctor said, we don't know what to do. The surgeon is out of town until the weekend and once he's back we will discuss with him how comfortable he feels about operating on my dad. It could be that after he reviews the results of today's test that he'll say he won't do the surgery. We don't know. So this was discouraging to hear today.

So at this point I don't know what to think about what is best for him. If we did decide not to do the surgery or the doctor said there was no point in it, then where does my dad go? He can't come back home in this condition. He's not able to walk now or stand without assistance. He would need constant medical attention and we can't provide that at our home. There is much to think about for sure. All we can do now is wait for the surgeon to speak with us. What he says will help us decide the outcome for my dad.

Thank you to those that have expressed your concern and how you are keeping my dad in your prayers. That means a lot. We would really appreciate all the prayers for him right now since his chances of survival at this point aren't good. I'll post more once we meet with the surgeon.

 

[Nancy]

I'm so sorry that you have this discouraging news. Are you close to any large medical centers where there might be help available for the most difficult situations?

Cleveland Clinic is the best in most people's opinions for patients who have the most serious problems. It sounds as if you would need to contact a place like Cleveland Clinic as soon as possible to see if there would be something that could be done for your dad.

Here is a link:

http://www.clevelandclinic.org/heartcenter/

What one doctor cannot do, another might be able to do. It would at least be worth calling them. They are very helpful, and used to dealing with people from all parts of the country and world.

I surely hope there is some help available for your dad.

God Bless.

 

[Harpoon]

Echoing Nancy here...

Cleveland Clinic IS the place to be. It can be an option of last resort for some (distances and other logistical problems as far as getting a patient there) but they are by far the best place you can possibly be if you have a heart condition.

They're certainly that way for pediatric heart desease, they set the bar and it's a pretty high standard.


It's worth a look, especially if you don't have many other options.

Talk it over with your dad's physcians and maybe you can all make some contacts with the people at the Cleveland Clinic.

Dr. Rosenthal and Dr. James Young are two of the guys I met while I was there. Young is the director of their transplant team and Rosenthal is a peds card, most of the folks I dealt with were pediatric cardiology, but they have just as strong a team of adult cardiologists.

It's well worth taking a look at.

 

[ALCapshaw2]

Sorry to hear that report.

It sounds to me like your father's best hope is to contact a surgeon who specializes in HIGH RISK patients.

The Cleveland Clinic is the #1 rated heart hospital.
MAYO Clinic, the Texas Heart Institute, and DUKE University also come to mind. There is an Australian Doctor (Dr. McGiffin) who specializes in High Risk Surgery at the University of Alabama Hospital at Birmingham (ALA).

We have several members from Colorado so perhaps one of them may know of a High Risk Surgeon in Colorado, although I noticed some of our members from Colorado went to The Cleveland Clinic...

The Test you described sounds like the TransEsophegael Echogram, commonly refered to as a TEE. It provides better resolution pictures of the valves than a conventional chest Echocardiogram.

I hope that you find someone who can help your father.

'AL'

 

[SHerrin Hutt]

Heart Valve

Heart Valve

Hi Ronald,
My problem was a little like yours. I had my first stroke in 1992 and had to have my first surgery in 5/99. I live across the river from Louisville Ky. None of the surgeons here would touch me because my heart was so weak and they knew they would problem kill me. So I was sent to Cleveland to have aa repair. The three years gave me the time for my heart to get stronger. So in 1/02 I had my second stroke and had to wait three months to have the mitri- valve repalcement. My prayers and thought are with you and your family. It has been a long road but I am doing great now. I got to go to Chicago this past fall to meet alot of theses great people that keep this sight going. They are our ANGELS!!!!!!! for sure
Sherin Hutt
Mitri Valve repair 5/99
Mitri Valve replacement 3/02

 

[RonaldHeart]

After much thought and prayer, we have made a decision. We have decided NOT to have the surgery tomorrow. The surgeon we have is the best in town if not the state from what we have heard. This is a surgeon that does do high risk surgeries all the time. He looked over my dad's situation and reviewed all the test results before he talked to the three of us yesterday. It was a very serious and honest conversation about all the possible complications of the surgery and what my dad would have to go through afterwards. Based on all the facts the surgeon had, he said that he talked to several other surgeons about my dad and every single one of them told this guy they wouldn't do the surgery because my dad would not survive it. This surgeon said he would still perform the surgery if that was what we really wanted, but he said if my dad were his dad, he wouldn't do the surgery. We will take him home this week and make arrangements for in-home care. We don't know how long he has. Maybe he can live one year or more. We have no idea what to expect.

I do know that for days I've felt that the surgery wouldn't work and my dad would die. We have close friends that have felt the same exact thing. Other doctors have told us today that we made the right decision. My dad's heart is very, very weak and I don't even know if the Cleveland Clinic could help my dad. It seems that all we can do is make him comfortable, have the doctors keep a close eye on him, and pray that we'll have him around for a long time yet.

We don't have the money to go to Cleveland, so I don't even know if it would be worth it contacting them. Even if we faxed them all the records and they reviewed everything, we couldn't travel there with my dad in his condition. Just going to a doctor's appointment here in town is an ordeal for him. I'll mention the clinic idea to my mother and father, but I don't think we can pursue that avenue. We're just too far away from Cleveland.

If I find anything else out, I'll post that here. My dad might be coming home Thursday. We have to make the arrangements first with an agency for in-home care and to make sure we have the necessary supplies at home for him. We know we don't want to get hospice involved.

 

[Karlynn]

You have my continued prayers. When all is said and done you have to make the decision that you all will be able to live with. My sister and I went through a similar decision with my Father and it is such an emotional thing to go through.

Please continue to keep us posted on how your Father is doing.

Wishing you all strength and peace,
Karlynn

 

[Harpoon]

http://www.patient-travel.org/

http://www.angelflight.org/

That's two that I've found...


I hear a public service announcement for a free, emergency medical flight service all the time on the college radio station here. I tried looking it up through the Ad Council which provides most of the PSA's to the radio station but couldn't find any organization or campaign that applied to this listed, however I KNOW these things exsist, there's two links above to prove it.


It sounds like you've kind of resigned yourselves to a decision not to treat, however if you're still considering alternatives, this might get you to Cleveland Clinic ok.

If anything, you might try contacting the docs there, 1.800.223.2273

There is a possibility that they might do the transport themselves, though I'm pretty sure it would be tacked on to a bill.

Go on-line and do searchs for free emergency medical flights or variations of that...


Maybe it is "too late" but maybe it's not. I dunno.


Maybe it's a false hope too. Just seems to me that I'd prefer to make this kind of decision only after I know I've considered EVERY possibility available.

There are networks of private and commercial pilots who donate their time (and aircraft in some cases) to people who are in desperate need of medical attention at a hospital that's out of their reach. They make their decisions based on the condition of the patient, distance to travel, and financial need... If Cleveland Clinic will take him, maybe the service will get you there and back.

Some of these organizations carry medical personal and equipment to monitor a patient in-flight....