Whew. Where do I begin?
So yesterday I had lots of tests.....
I had lots of labs, chest x-ray, chest CT scan, EKG, surface echocardiogram, stress echocardiogram and so on. When we met with Dr. Griffin that morning (before the testing) we were moderately disappointed when Dr. Brian Griffin told us that it looked as if I not only needed BOTH my mitral and aortic valves replaced but that he recommended mechanical valves. ( this means blood thinners forever).
So today I went for my heart catheterization. Dr. Griffin requested that the cardiologist performing the heart cath to do an aortagram. This is where they put contrast dye into the aorta and then we would know exactly how much it was leaking. So the heart cath is going along per normal ( I'm fully awake but lightly sedated). All of a sudden my right leg started burning and itching and my chest got hives. Even though I've had this dye before... I've developed an allergy. So needless to say they pumped me full of Benadryl and had to stop the test without the aortagram. Another setback. I laid flat in bed for 4 hours after the test ( normal) and then went back to Dr. Griffin's office. He had reviewed everything over again. Here's the big news. He recommends NOT having the surgery right now. He says that I absolutely have severe regurgitation in both valves. I have 3+ leakage out of 4 in both.He was very plain in telling us that the surgery is inevitable but we can wait a while. However; my stress echo was surprisingly excellent and my heart is compensating very well for the valves' shortcomings. His assessment is that if we can wait until I'm having symptoms or until the leakage progresses a little more that we should. He wants to minimize the need for subsequent surgeries as they are more complicated and don't seem to yeild as good of results. I am with the best heart institute in the world as far as I'm concerned. So why fly all the way here and not trust him? I was fully prepared for the surgery. But God has intervened and I know that this is his will. I will follow up with Dr. Griffin at least once a year and possibly twice. What a blessing it is to be able to do that. Cleveland Clinic is a class all it's own. Thanks to all of you that have said a prayer for me and my family. I felt covered in prayer through every appointment and test. God is good.. ALL the time.
We arrived in Cleveland yesterday to some GORGEOUS weather!! It's stifling and unbearably hot in Alabama so it's a nice change.
We had a pretty good night's rest and then up at 4:45 central time. Met with Dr. Griffin this morning and he recommends that both valves be replaced with mechanical valves. Tissue valves are still an option and that's going to be a VERY hard decision for me. Mechanical valves mean that I may not need surgery again.... BUT I will need to be on blood thinners for the rest of my life. I am not a fan of the blood- thinners.
I have been thoroughly impressed by this hospital thus far. It's clean and open and airy and just gives a good feeling. Staff is pleasant and helpful. Pease continue to pray for me and my family and for all the medical staff that will be involved in my care. I am so blessed with so many things.
Tomorrow I fly to Cleveland. I am sad to leave my kids for 2 weeks but I'm not scared. I know that the fact that I survived cancer is a blessing. I know that falling in love and getting married was a blessing. I know that carrying and giving birth to my 2 precious children is a blessing. I know that being operated on by one of the best surgeons in the world is a blessing.
So tonight is the last night I'll sleep here for 2 weeks. Hopefully when I come back to my home.... My heart will be healed. So I'm gonna sign off and go hug my babies. :)
In one week my Mom and I will travel to Cleveland Clinic for repair/replacement of my aortic valve and who knows what they plan to do ( if anything) for my mitral.
I am so sick of the waiting. I want to get this show on the road. I meet with Griffin on next Thursday and lots of tests that day. Next Friday I have a heart cath. Question: does CCF's cath lab always go through the groin or do they do the arm as well?
Our flights are booked .... husband will fly in on Sunday and I meet with Pettersson on Monday ( surgeon) and surgery Tues.
Hotel is booked. Did any of you know that the Guest House is closing August 15th and will be torn down for a new medical facility?
I'm leaning toward tissue valve since I'm likely to need subsequent surgery(ies) in my lifetime. Maybe in 10-15 years when my tissue valve gives out.... They'll be doing this stuff through catheter. ;)
Whew. So FINALLY after more confusion that anyone deserves.... I have a date. I will travel to Cleveland and meet with Dr. Griffin at the end of this month. I'll have many tests including a heart cath. I'll meet with Dr. Pettersson on day 4 I think and the next day they will operate. I am ready. I am more afraid to live with diseased valves that I am of the surgery. I realize that because my valve disease was caused by chest radiation- that my situation may differ from congenital valve issues or valves damaged by illness. But if anyone has ANY words or wisdom.... Or tips about what types of procedures/methods may be better.... Or how you feel about your tissue or mechanical valve--- PLEASE don't hesitate to share. I guess we'll be booking flights and hotels as soon as I get my packet in the mail. Those of you that had surgery out of town and flew- did you book a round trip flight not knowing when you'd be retuning home? God Bless all of you!
So after my cardiologist office giving me the run- around about my records and when they were sent... CCF finally has my records. They are being reviewed by Dr. Griffin and I'll likely be referred to Dr. Pettersson because he has the most experience with radiation induced valve disease. I'm hoping to hear something tomorrow. It still may be 2 weeks until I get surgery date. What a roller coaster. Any Pettersson fans? God bless.
PS- I thank GOD every day for wonderful family and friends.
I am getting super impatient waiting to hear from Cleveland Clinic . I just want to get this show on the road. How long did you Cleveland people wait to get a surgery date after your records were sent?
I was treated for Hodgkin's Disease at the age of 15. I will be 35 in July. For my particular stage of cancer, radiation treatment was the protocol. ( now people get chemo). Since then it has been determined that radiation to ones chest causes heart disease. When I was pregnant with my now 10 year old daughter I was referred to a cardiologist for a murmer that turned out to be mitral valve regurgitation with thickening. I had no changes to this condition until I was in my last month of pregnancy with my now 5 year old son. At that time I went into congestive heart failure and he was delivered early. Soon after I went back to my baseline echo and have had no changes since then. Well.... Until 6 months ago. At that routine echo- it was determined that in addition to the mitral valve issue, it looked like I had some leakage across my aortic valve as well. " don't worry" they said. " just come back in 6 months instead of a year". So I did. Which brings to me my last echo almost 2 weeks ago. At that appt my cardiologist saw not only the old mitral valve issue but the leakage across the aortic valve was now moderate with stenosis and a decreased ejection fraction. He scheduled me for a TEE which I had this past Wednesday. I was told that I needed surgery and the Cleveland Clinic was recommended as my cardiologist trained there. So this past Friday all of my records were fed exed to Cleveland and I'm waiting to hear back. As you can imagine my family and I are going through a lot of emotions right now. Any advice is welcomed. For any of you that used Cleveland Clinc.... What surgeon did you use? Were you pleased? I've read that Drs. Lytle an Pettersson both have experience with radiation induced valve damage. Do you have flight information? Was that super uncomfortable on the way home? Also... My husband and Mom are coming with me. Do you have opinions about lodging? I'm really finding all of your journals helpful. God Bless. :)