Frustration

Pacer Chicks and Men,
I need to complain so if you don't want to read this I understand. I am very frustrated at the way things have been going with my health. It seems like it is completely up and down. The people that know me well on here through the years know my story by now.
Last week at my regular Dr's visit I went in not feeling well and not only got told that I had a sinus infection but that he also could hear that my heart was not sounding right. That he could tell that scar tissue was developing back. Which means the likely hood of more surgery is very very high.
I am taking the coumadin and was hopeful that would be enough to prevent me from developing more problems. I have been having so much chest pain that comes and goes. I asked the Dr what he thought was my likely hood of needing more surgery and how soon he said a 95% chance that I would need it within a couple weeks. He said a 100% chance if they did go in that I woudl need a stent placed in my SVC for the SVC Syndrome. ( vena cava).
If I need the stent placed it also means that I will have to have the pacer removed and leads placed epicardial. I don't know much about this. The heart Dr the week prior said that if it came to that point he would be going through my ribs. which would also mean a new pm.
I hate the idea that I already would need another pm I keep going through them like crazy for reasons that should not have to be the case.
I'm tired of the pain though and am waiting for a call back from my angio Dr to see what the plan is. Something needs to happen so I have energy and could do more things.
Has anybody else had anything like this and could tell me about there experiences with SVC Syndrome of having epicardial placed leads and if it was painful? Thanks for everything.

Blessings and love,
Tammy

3 Comments

So sorry

by sputnick - 2010-08-06 02:08:02

Hi Tammy,
I have no experience of the type of problems that you are experiencing. However, I just wanted to let you know that i think you are an amazingly strong person and i have an immense admiration for you! I remember reading your posts a whil;e back when you were in hospital and I couldn't believe how positive and strong you were when faced with such serious problems! I would have been a quivering jelly of self pity!
I am sure that things will turn out right in the end for you and I will be sending warmest wishes and love to you and thinking of you while you get fully well. i am sure someone will be on soon who can be more of a help regarding your particulr heart problem.
Keep strong Jan xx

HI

by pacergirl - 2010-08-07 11:08:46

Tammy, I understand what you are saying. You are so young to have to deal with these medical situations. If I could I would make things better for you from one heart patient to another. However, all I can do is be here to lend some support, which I do without any questions being asked. You are a wonderful person and I really think you are wise beyond your years.

I pray for a pain free day for you, for healing, for happiness and joy for you. I do this everyday!

love ya,
Pacergirl

SVC here too

by BrynaR - 2010-08-08 01:08:08

Hi Tammy,

I am so sorry you are going through all of this, I am in the same boat as you so I know how you must feel!

I do not know your whole story, but have you already had some sort of intervention for the SVC syndrome? Was it an angioplasy? I traveled from NC to OH to see specialists at the Cleveland Clinic who have done several cases of SVC syndrome. From what I understand there is no protocol for dealing with it, it is a somewhat rare complication and not many Doctors have seen it.

I was told that an angioplasty, in my case, was not only incredibly risky (vein could rupture) but that the scar tissue would almost always come back. While the Doctor said he would be willing to do it, I felt that the risk involved did not make this a real option.

Now the stent... my Doctor said that he would 100% NEVER put a stent in that area of the heart again. He had done it for other patients and they all had stent migration, meaning the stent found its way into the right atrium of the heart. This also required emergency surgery.

I will be having surgery to remove the blocked area of my SVC, replacing it with a homograft (frozen tissue from a cadaver... kinda creepy, huh?!). This type of repair has a very low chance of re-scaring and I should not have to take anticoagulation. Once I recover from the surgery I should be good to go!!

Have you had any testing done to confirm that the blockage is back? Are you having symptoms? I will also be getting the epicardial pacemaker but can not answer any of your questions yet, as I have the same ones!! Oh, and as for the Coumadin.... this will only help you to not form any blood clots, this will not keep the scar tissue from forming. I hope your Doctor did not lead you to believe this was the case...

I had to really take charge of my care when all of this started to happen. I did loads and loads of research online and knew just what questions I wanted answered and what qualifications I required for the Doctor that would be taking care of me. I would strongly recommend asking questions in regards to the stent, if that is what they are suggesting.

I hope this did not come across as mean! I really understand where you are coming from with the frustration. I was feeling that way as well up until last week when I heard the plan of action from the surgeon. Now I feel at peace with it all (although I am nervous as all get out about the surgery!) because I just know it is the right thing to do. I know I am in very skilled and experienced hands, that has helped me come to terms with it as well.

I hope you find some answers and direction. Please feel free to keep in touch, we can go through this together!

Take good care,

Bryna

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