Questions????

[breakingwave]

I had open heart surgery in June, everything was going well in fact Dr. Conte from John Hopkins was pleased my recovery was so smooth, quick and home in about 6 days. Everything was going along fine and dandy. I waited till my chest healed somewhat before I had the follow up echo. In October, 3 months later I started with swelling in my legs, calves, and ankles, with a red color added to them,never had this before surgery. We had been traveling as to buying a new house some hours away from our old and so I just chalked it up to too much sitting in the car. Went to my general doctor and he told me to double up on my Lasix, now up to 80. mg. Still no change only getting bigger calves and bigger ankles with more redness as well as some shortness of breath. Now he ordered more Lasix, up to 120 mg. Went to get my follow up echo before my 6 month appointment with cardio. Called and told looks great, but my regular doctor said he had reason to have me take a pill for hypothyroid. No relief to the swelling and I started to feel worse, fatigue, as well as the breathing issues and walking now became a problem. I hadn't been able to make it to the bed, laying flat yet so sleeping with recliner. Saw my cardio doctor and he said it could be an obstruction and ordered a CAt scan of my abdomen as well as a new echo.

When we went back to the cardio in our hometown, for the results he showed us their was a leak and suggested it could be a loose stitch, and probably would have to be a re do. Well as you can imagine this was upsetting, the idea never crossed my mind. I said that I wanted to go back to the surgeon and ask his opinion of what to do next, he is in the next state, which is only an hour away, at John Hopkins but I felt he would give us good direction. We waited two hours to see him and then were the last of his patient for the day. His attitude totally blew me away. This man who had been so patient, understanding and a skilled man was not happy this was at his doorstep and seemed defensive.. He told us he wanted us to see in his opinion the top cardio and even though we brought him 10 CDs he wasn't comfortable with the echos and information and didn't see anything that indicated a loose stitch which was true, no but the cardio guy had said that, he showed us though, but from our looking at the reports it didn't say anything like that and then we were out of there in about 15 minutes.

Now we are sorta shell shocked and proceeded with having his assistant help us make an appointment with the new cardio and top guy which we will do this Thursday. In the meantime I have some water blisters form and went to see a doctor in the general practice to make sure they were getting infected and what to do about them. He ordered another durectic, Metolazone to take twice a week. While we were there he showed us a letter from the surgeon and gave a copy to us. After reading we had even more questions. One of the lines he wrote said. " Given patients Morphology, we would not be enthusiastic to re-operate on her and would want to try all medicial interventional approaches to address her CHF before considering surgery, if there is an indication."

My questions are: What the heck does his statement mean, he thought I was a good candidate last year, why not now? Has anyone ever taken Metolazone, and does it have any nasty side effects? What questions do I ask the new cardio guy on Thursday? Is this normal to be dealing with such water retention, I put on 20 lbs in a little over a week. He suggested a Tee, is that difficult, and RAD, don't know what that and a CAt scan I'm guessing of the heart?

Any help for advice or anyone having to undergo the same type of situation would be greatly appreciated, I am officially going out of my mind now and I'm not usually a Nervous Nellie!!!

 

[dornole]

"CHF" I take to mean you have congestive heart failure which tracks with the leg swelling as well as the trouble breathing, particularly if you are dry coughing whenever you try to lie down (I had this and had to sleep in a chair). A TEE is a transesophageal echo, they will put a probe down your throat to look at your heart from that angle rather than just moving it around on your chest - maybe you even had one prior to surgery, it seems like this is common. Light sedation, no big deal.

Sounds like more testing and a good look by a cardiologist is in order since if I read this right you have been dealing with this since Oct? Did it suddenly get worse with this 20 lb fluid gain? Hopefully he/she can shed light on the underlying cause of the CHF (valve problem, something else) and what is likely to be helpful in terms of medical intervention by the cardiologist, or a repeat surgery. It sounds like concentrating on relating your symptoms, exactly when they occurred, how severe they are in as objective/quantifiable terms as you can, if they are getting worse, and how they are impacting you will be the most helpful, along with the rest of your medical history.

 

[dornole]

What valve did you have replaced?

 

[ski girl]

Bloody hell that's some story!

First, TEE is not a big deal, you're pretty much knocked out for it and it gives them a really good view of the valve, much more so than the traditional echo. So, you want one.

Second, you're on a massive dose of Lasix! And the fact that you're still retaining water is not a good sign. I'm the exact opposite of Nervous Nellie too and this would be freaking *me* out. Get that second opinion. In the meantime, walk. As much as you can. And try to get your legs above your heart (not while walking ;-)).

I've had two OHS and I came out of them about 15lbs more than I went in (and I'm only ~130lbs), after the second I had about a year of battling to stop the fluid retention so it does happen, but what you're going through is a bit much! Good luck, and be persistent.

 

[Freddie]

USES: Metolazone is a "water pill" (diuretic) that increases the amount of urine you make, which causes your body to get rid of excess water. This drug is used to treat high blood pressure. Lowering high blood pressure helps prevent strokes, heart attacks, and kidney problems.This medication also reduces swelling/fluid retention (edema) which can result from conditions such as congestive heart failure or kidney disease. This can help to improve symptoms such as trouble breathing.

And if you're taking warfarin:
WARFARIN SODIUM (in Warfarin Tablets) may interact with METOLAZONE (in Metolazone Tablets)

Blood clotting normally occurs in response to a cut or other types of injuries to protect the body from excessive bleeding. Many substances are involved in the clotting process including platelet cells and various proteins that are produced in the body. Water is one of the main components of the blood, along with red and white blood cells, platelets, and proteins. Metolazone promotes the removal of sodium and water from the body by the kidneys. When this happens, substances in the blood become more concentrated meaning that the same amount is now contained in less fluid. Because the platelet cells and proteins are more concentrated, the blood may be more likely to clot. Warfarin is generally used to prevent your blood from "coagulating" or forming blood clots. When these drugs are used at the same time, metolazone may diminish the ability of warfarin to prevent blood clots. If warfarin and metolazone are taken together, your doctor may want to monitor you closely for signs of a clotting disorder. Blood tests can be used to make sure that you are getting the right amount of warfarin. If you are experiencing problems, it may be necessary to adjust the dose of warfarin.You may want to ask your healthcare provider about this potential interaction if you think you are having problems.

 

[breakingwave]

Love this forum

Love this forum

I always appreciate your responses so much, doctors are great, but I always feel good receiving information from those that have been in the trenches, those who can relate. Thanks for your responses!

I had open heart surgery in June, everything was going well in fact Dr. Conte from John Hopkins was pleased my recovery was so smooth, quick and home in about 6 days. Everything was going along fine and dandy. I waited till my chest healed somewhat before I had the follow up echo. In October, 3 months later I started with swelling in my legs, calves, and ankles, with a red color added to them,never had this before surgery. We had been traveling as to buying a new house some hours away from our old and so I just chalked it up to too much sitting in the car. Went to my general doctor and he told me to double up on my Lasix, now up to 80. mg. Still no change only getting bigger calves and bigger ankles with more redness as well as some shortness of breath. Now he ordered more Lasix, up to 120 mg. Went to get my follow up echo before my 6 month appointment with cardio. Called and told looks great, but my regular doctor said he had reason to have me take a pill for hypothyroid. No relief to the swelling and I started to feel worse, fatigue, as well as the breathing issues and walking now became a problem. I hadn't been able to make it to the bed, laying flat yet so sleeping with recliner. Saw my cardio doctor and he said it could be an obstruction and ordered a CAt scan of my abdomen as well as a new echo.

When we went back to the cardio in our hometown, for the results he showed us their was a leak and suggested it could be a loose stitch, and probably would have to be a re do. Well as you can imagine this was upsetting, the idea never crossed my mind. I said that I wanted to go back to the surgeon and ask his opinion of what to do next, he is in the next state, which is only an hour away, at John Hopkins but I felt he would give us good direction. We waited two hours to see him and then were the last of his patient for the day. His attitude totally blew me away. This man who had been so patient, understanding and a skilled man was not happy this was at his doorstep and seemed defensive.. He told us he wanted us to see in his opinion the top cardio and even though we brought him 10 CDs he wasn't comfortable with the echos and information and didn't see anything that indicated a loose stitch which was true, no but the cardio guy had said that, he showed us though, but from our looking at the reports it didn't say anything like that and then we were out of there in about 15 minutes.

Now we are sorta shell shocked and proceeded with having his assistant help us make an appointment with the new cardio and top guy which we will do this Thursday. In the meantime I have some water blisters form and went to see a doctor in the general practice to make sure they were getting infected and what to do about them. He ordered another durectic, Metolazone to take twice a week. While we were there he showed us a letter from the surgeon and gave a copy to us. After reading we had even more questions. One of the lines he wrote said. " Given patients Morphology, we would not be enthusiastic to re-operate on her and would want to try all medicial interventional approaches to address her CHF before considering surgery, if there is an indication."

My questions are: What the heck does his statement mean, he thought I was a good candidate last year, why not now? Has anyone ever taken Metolazone, and does it have any nasty side effects? What questions do I ask the new cardio guy on Thursday? Is this normal to be dealing with such water retention, I put on 20 lbs in a little over a week. He suggested a Tee, is that difficult, and RAD, don't know what that and a CAt scan I'm guessing of the heart?

Any help for advice or anyone having to undergo the same type of situation would be greatly appreciated, I am officially going out of my mind now and I'm not usually a Nervous Nellie!!!

 

[breakingwave]

It did like in one week. But ever since it happened, Oct. I have been trying everything to lose it.

"CHF" I take to mean you have congestive heart failure which tracks with the leg swelling as well as the trouble breathing, particularly if you are dry coughing whenever you try to lie down (I had this and had to sleep in a chair). A TEE is a transesophageal echo, they will put a probe down your throat to look at your heart from that angle rather than just moving it around on your chest - maybe you even had one prior to surgery, it seems like this is common. Light sedation, no big deal.

Sounds like more testing and a good look by a cardiologist is in order since if I read this right you have been dealing with this since Oct? Did it suddenly get worse with this 20 lb fluid gain? Hopefully he/she can shed light on the underlying cause of the CHF (valve problem, something else) and what is likely to be helpful in terms of medical intervention by the cardiologist, or a repeat surgery. It sounds like concentrating on relating your symptoms, exactly when they occurred, how severe they are in as objective/quantifiable terms as you can, if they are getting worse, and how they are impacting you will be the most helpful, along with the rest of your medical history.

 

[breakingwave]

The Aortic.

What valve did you have replaced?

 

[Mentu]

I want to support the advice you've been given. YOU ARE NOT A NERVOUS NELLIE! I would be screaming my head off. My doctor has told me since my AVR that if I ever gain 2 lbs in a day and experience any swelling, especially in my feet and legs, to report to her immediately. 20 lbs in a week would have her deeply concerned. I also think you need that 2nd opinion from a cardiologist unrelated to your former surgeon. CHF is a serious health threat and its cause needs to be tied down so it can be treated at once.

I trust that you are making a written list of questions for this new cardiologist. If you have not don't just rely on your memory when you speak with him/her about these symptoms; make separate lists of questions and symptoms/general health issues and try to put dates to them as much as you can.

Questions:
1. What is causing the CHF?
2. Why am I not responding to the medications?
3. Is my valve leaking or has it been damaged?
4. What additional tests are needed? TEE or Heart Cath

Information:
1. List the symptoms you have experienced.
2. When did each symptom first appear.
3. Discuss any any flu like symptomst you have had since your AVR.
4. Were there any problems with your recovery before these symptoms began.
5. List your medications and how they have changed since your AVR.
6. Describe your exercise routine since your AVR and how your exercise tolerance has changed.
7. List any dental work you have had including cleanings.
8. Describe any minor infections you may have experienced since your AVR.

Making two lists will focus your thoughts and it is very likely that you will find you have more questions and more information that you can include to give the new cardiologist a better feel for what has been happening since your AVR. I hope this helps.

Larry

 

[dornole]

I would entirely stop worrying about being a Nervous Nellie too. When I developed CHF I kept going into urgent care and just saying I had a cough . . not until I said "I am coughing up blood, not that bad though" and they said "how much" I said "size of quarter" they said "OMG!!" Galactically stupid on my part.

Speak up, forget about them judging you for wasting their time and be specific, lesson learned!!

 

[rider76]

I am two weeks post AVR, and in a post-acute rehab hospital. I've gained 12 pounds since surgery and my feet and legs are badly swollen. Five days ago, I asked that my cardiologist be contacted about this, and it just seemed this hospital was dragging its feet. So today I phoned her myself and I have an appointment with her tomorrow morning. I think edema is always a cause for concern and there's nothing "nervous nellie" about it.

Catherine

 

[breakingwave]

We did meet with him last Thursday and ever since my head has been spinning, he said that most likely I am suffering from the hardened muscle around the heart or where the sack around the heart has hardened and needs to be peeled away. He wants me to do a cardiac MRI to see for sure. He was not the most friendly with comments that were rude to say the least but he is supposed to be very good at what he does. I'm still getting over the visit. Still having swelling and not feeling the greatest, and my local heart people do not have the best reputation. He didn't really want to hear anything I had to say.

I want to support the advice you've been given. YOU ARE NOT A NERVOUS NELLIE! I would be screaming my head off. My doctor has told me since my AVR that if I ever gain 2 lbs in a day and experience any swelling, especially in my feet and legs, to report to her immediately. 20 lbs in a week would have her deeply concerned. I also think you need that 2nd opinion from a cardiologist unrelated to your former surgeon. CHF is a serious health threat and its cause needs to be tied down so it can be treated at once.

I trust that you are making a written list of questions for this new cardiologist. If you have not don't just rely on your memory when you speak with him/her about these symptoms; make separate lists of questions and symptoms/general health issues and try to put dates to them as much as you can.

Questions:
1. What is causing the CHF?
2. Why am I not responding to the medications?
3. Is my valve leaking or has it been damaged?
4. What additional tests are needed? TEE or Heart Cath

Information:
1. List the symptoms you have experienced.
2. When did each symptom first appear.
3. Discuss any any flu like symptomst you have had since your AVR.
4. Were there any problems with your recovery before these symptoms began.
5. List your medications and how they have changed since your AVR.
6. Describe your exercise routine since your AVR and how your exercise tolerance has changed.
7. List any dental work you have had including cleanings.
8. Describe any minor infections you may have experienced since your AVR.

Making two lists will focus your thoughts and it is very likely that you will find you have more questions and more information that you can include to give the new cardiologist a better feel for what has been happening since your AVR. I hope this helps.

Larry

 

[breakingwave]

I think its sad that you have to get to the point of having to get these professionals attention. Not sure why it is so hard to make sure of what going on as a matter of just doing the job. It makes it tough when you not feeling your best to have to go to those places of getting the proper care.

I would entirely stop worrying about being a Nervous Nellie too. When I developed CHF I kept going into urgent care and just saying I had a cough . . not until I said "I am coughing up blood, not that bad though" and they said "how much" I said "size of quarter" they said "OMG!!" Galactically stupid on my part.

Speak up, forget about them judging you for wasting their time and be specific, lesson learned!!

 

[escargome]

Hi breakingwave, I don't know if this would be of any help, but check with your insurance for a case manager, or patient advocate that you can speak with to state the type of run-around you have been given. Someone has to be in your corner to make the medical professionals give you some straight answers. I can surely say you are not a nervous nellie. If it were me I would be screaming at someone to stop their blah blah blah and listen to what I have to say. I will keep you in my thoughts and hope you get some definitive answers soon.

 

[breakingwave]

Thank you, a good idea.

Hi breakingwave, I don't know if this would be of any help, but check with your insurance for a case manager, or patient advocate that you can speak with to state the type of run-around you have been given. Someone has to be in your corner to make the medical professionals give you some straight answers. I can surely say you are not a nervous nellie. If it were me I would be screaming at someone to stop their blah blah blah and listen to what I have to say. I will keep you in my thoughts and hope you get some definitive answers soon.