4th OHS for valve replacement in 8 years

[Shirley Dickey]

Hello, it's been a while since I have posted anything. I was wondering if anyone has faced having a 4th OHS to replace valves?
I had AVR in 2009 with bioprosthetic..... 2011 MVR ( mechanical valve )and double bypasses due to struts from AvR pinching 2 arteries.... then in 2012 had to have the MVR again to remove the mechanical valve ( due to severe internal bleeding and multiple transfusions ( bleeding issues never found ). And now in 2017 facing having another surgery for AVR & MVR due to both of them being severely stenosed and staying CHF all the time and causing severe Pulmonary Arterial Hypertension . and I also have Afib and in the last 6 months I have had to have multiple blood transfusions again and according to cardio and hematologist I am in hemolysis ( shearing red blood cells as the pass through stenosed valves ( really makes no sense to me ),
Has anyone ever experienced this or have any advice ?? I am currently on
100 mg of Torsemide
50 Spironolactone
2.5 mg Metolazone
140 MEQ of potassium and still range 3.3-3.8 on lab work
400 mg of Amiodarone
80mg baby aspirin
600mg of gabapentin due to nerve damage on lower back from reoccurring shingles
50 mg Levothyroxine due to high doses of afib meds

Thanks any advice would be greatly appreciated
Shirley

PS .... had difficulty with each surgery except the 3 one

 

[Sheffy1124]

Shirley, my brother has had three surgeries to correct his issues. He had one in third grade, one at age 21 and then recently at age 42. The reason for the third one was his aortic arch need to be replaced. He had that surgery at Loma Linda University. During this surgery they also replaced his St. Jude mechanical for the On-X valve. It's been two year since his last surgery. He will be moving from So. California to Alaska next month. He is living life to the fullest.

 

[Paleowoman]

I had AVR in 2009 with bioprosthetic..... 2011 MVR ( mechanical valve )and double bypasses due to struts from AvR pinching 2 arteries.... then in 2012 had to have the MVR again to remove the mechanical valve ( due to severe internal bleeding and multiple transfusions ( bleeding issues never found ). And now in 2017 facing having another surgery for AVR & MVR due to both of them being severely stenosed and staying CHF all the time and causing severe Pulmonary Arterial Hypertension . and I also have Afib and in the last 6 months I have had to have multiple blood transfusions again and according to cardio and hematologist I am in hemolysis ( shearing red blood cells as the pass through stenosed valves ( really makes no sense to me ),
Has anyone ever experienced this or have any advice ??

Hi Shirley - welcome back to the forum. I looked back at some of your previous posts, sorry to read all of what you have been through and what you are going through. This reminds me so much of another forum member HarrietW who has had bleeding issues with multiple transfusions following AVR with mech valve and MVR, and pulmonary hypertension. Here is her latest thread: http://www.valvereplacement.org/forums/forum/heart-talk/876174-say-it-isn-t-so-hello-friends

I can’t add anything more useful to my reply to you, but wishing you all the best and that your cardiologist, haematologist and surgeon come up with a solution for you.

 

[Shirley Dickey]

Thank you both for responding to my it is much appreciated. Paleowoman I will definitely read the other thread thanks for sharing the input.

 

[dornole]

You are dealing with a lot of complexity. I agree that you and HarrietW might be a good match to support each other. I had pulmonary hypertension with CHF before repair and I am sure you are not very comfortable right now. I hope you can be a good candidate for OHS and that it will make things much better for you. Hugs.

 

[Shirley Dickey]

Thank you for your response. Yes life is rather uncomfortable most days. But keeping a positive attitude and I always remember things happen for a reason... Not to sure what the reason behind this is but it is what it is and I have accepted that..
Thanks again for the kind words. And yes I have sent Ms. Harriet a personal message and hope to hear from here soon because I believe we could be a great support team for each other.... At least we would both understand each other's situation

 

[harrietW]

Oh Shirley Dickey
You and l seem like a match made in Heaven
Although I am afraid l don't really have much or any advice for you but most curtainly know what your going through as l am the transfusion queen. Last week was my most recent but l do know l am already in need of another .. l will go tomorrow morning to the lab for my hemoglobin and INR readings. I just cannot stay awake. Exhausted and completely worn out mentally and physically. I just don't know what they are going to do with me. 30 transfusions last 5 this year. Bleeding is through the GI system below the jujeum they have cauterized several times but the worst of the bleeding is from the small intestines more than 3 feet in they cannot reach them.
I am so sorry you are going through so much. I can't even believe you can handle another surgery. It is so traumatizing .. l recently saw a letter to my internalist from my Surgeon that said he would operate but he is not positive about the outcome would be.
He personally told me he didn't want to operate as I wouldn't make the delivery.
l gotta run at the moment but you are in my prayers Shirley Xx talk soon

 

[Shirley Dickey]

Yes I totally agree about us being transfusion Queens as I have had 4 this year myself along with multiple Iron infusion just to try to keep puttering along. And have some kind of energy I go tomorrow to have my testing done.i know I am past ready for another round of iron at least.. I had to have my mechanical valve removed cause they could never find an active bleed in my intestines even tho I was testing postive for blood in bowel and urine samples.. has been a complete nightmare to say the least and none of my surgeries we well so really worried about it this time around. Especially f they have to locate blood.. I am a - with rh- along with antibody k and a whole slew of other antibodies due to all the transfusions... So that alone poses a real problem when it comes to surgery..
I am in the shape I am in with blood issue this time around due to having to be cardioverted for afib which required a week of xeralto that I only managed for 3 days before the active bleed began again.. and under went all the test again and as before no results so had to stop the xarelto..
I have been from corpus Christi Texas to San Antonio Texas and now I am seeing heart and blood specialist in Houston Texas and may have a possible solution but requires a 4 redo in which they will replace the aortic and mitral valve during the same surgery and due to the bleeding issues I will have to have bioprostetic valves which they say I may get 10 years out of if ai am lucky..
But I am raising 2 small grandchildren so I have to take the chance and have something done so I can be here for them...
They have put me on oxygen at night time and as needed during the day... it has seemed to at least make it easier to sleep at night and if I use it during my naps it helps me push through the rest of the day..
In the face of adversity I choose to stay positive and believe there is a greater plan for my life that will allow me to stick around a while longer.. so I try to maintain a positive attitude and have faith in my drs and the man upstairs..
And I so wish they same for you..
I hope you start to find some kind of relief.. I always remember to do what I can and rest when I need to and anything I don't get to today will be waiting for me tomorrow..
Peace and comfort and much love and understanding for you and anytime I am here just buzz

 

[Nocturne]

Shirley, forgive me, I do not know much about your story. I noticed that you had CABG at the age of 41 -- that's very unusual. Do you know what caused the need for it?

 

[Shirley Dickey]

Shirley, forgive me, I do not know much about your story. I noticed that you had CABG at the age of 41 -- that's very unusual. Do you know what caused the need for it?

Yes I did .. I had an avr done in 2009 and by 2011 the struts or post of the Avr had fallen and pinched 2 of my coranary arteries causing a 100% blockage in 1 and an 80% blockage in the other that is the reason I had to have one. I have since a few other heart valve surgeons and 1 seems to think it is impossible to happen but could not offer any other reason for me having a blockage and another heart valve surgeons seems to believe that it was due to scar tissue due to the vein being nicked while having a few heart caths. But I do know that the surgery reports says it was due to the struts/post of the aortic valve that I had done in 2009. I seem to be a very complicated person as far as the heart issues go.
my surgical reports are quiet a read that for sure.
Thanks for asking about my situation.

 

[ottagal]

Shirley,
I wish I had some information for you, but want you to know I am thinking of you and wishing you the very best as you go forward with your decisions. We are here for you.

 

[Shirley Dickey]

Shirley,
I wish I had some information for you, but want you to know I am thinking of you and wishing you the very best as you go forward with your decisions. We are here for you.

Thank you much appreciated

 

[Northernlights]

Dear Shirley
have you looked on Adam pick's forum? He has info both on the Percutaneous valve and reoperations. One of the members has just had a 4 th op at Cleveland clinic with Dr Roselli. I do think with reoperations and your very complex case a second opinion at Cleveland or mayo would be sensible if possible. Houston is no. 21 for cardiac surgery but no. 1 may be better if you are very complicated! All the best with your difficulties

 

[Nocturne]

Yes I did .. I had an avr done in 2009 and by 2011 the struts or post of the Avr had fallen and pinched 2 of my coranary arteries causing a 100% blockage in 1 and an 80% blockage in the other that is the reason I had to have one. I have since a few other heart valve surgeons and 1 seems to think it is impossible to happen but could not offer any other reason for me having a blockage and another heart valve surgeons seems to believe that it was due to scar tissue due to the vein being nicked while having a few heart caths. But I do know that the surgery reports says it was due to the struts/post of the aortic valve that I had done in 2009. I seem to be a very complicated person as far as the heart issues go.
my surgical reports are quiet a read that for sure.
Thanks for asking about my situation.

Did you have a bicuspid aortic valve, or a regular tricuspid one?

Did you at any time have your Lp(a) tested, or have a coronary CT scan?

There is a reason I am asking.