While I am in the hospital at Cleveland Clinic in Ohio this week for heart surgery the doctors expressed the importance of my parents staying at the Intercontinental Hotel that is attached to the clinic. The hospital/patient rate is $335 a night plus tax. With tax equals $405. When I am discharged after surgery the doctors will discharge me from the hospital to the hotel and they want me at the hotel connected and I have to have my own hotel room adjoining with mom and dads. They will let me know when I am released to go home.
Lolli Pop does fantastic work and is my hero. Back in June I was in the hospital for 2 1/2 weeks at Cleveland Clinic and she literally saved my life. The doctors told my mom and I that I would not be here today if Lolli Pop would not have awakened me in the night alerting me to having issues breathing from what we have discovered is SUPERIOR VENA CAVA SYNDROME. This is just one of many task Lolli Pop does for me. I can't express enough how gratefuI I am for all the donations and prayers that made it possible for Lolli Pop to become a service dog. Lolli Pop still has one or two test to take as soon as I am up to it. But she is able to work for me legally.
I have a pacemaker for my heart and the central IV line that also goes into the heart. Both the pacemaker lead and the central IV line can cause the stenosis and blood clots in the veins. I also have had and have blood clots. My PACEMAKER LEAD is placed in the ATRIUM of the heart. My neck began to swell last June when I would infuse my TPN (Total Parental Nutrition, food in my vein). The swelling was caused due to stenosing of the superior vena cava vein and the main stenosis is at the top of the Atrium. The Superior Vena Cava is the big vein that carries and returns all the blood back into the heart at the Atrium. While in the hospital in June the doctors at Cleveland Clinic attempted to do a Angioplasty and open up the flow through the superior vena cava by ballooning it. This procedure failed to last. Upon returning home local physicians of mine at Prairie Heart here in Springfield did another Angioplasty trying to balloon the vein open again. This procedure only benefitted me for about 4 days and the vein closed, or stenosis back off.
Mom and and I returned home last evening after a week at the Cleveland Clinic meeting with 3 very well known Heart Surgeons in the country. My Surgery is scheduled for this Thursday December 10, 2015. The exact surgery the 3 surgeons will performs not exactly known. They told us there could be a few ways they could possibly fix it. But one thing discovered this past week, Thanks to the cardiac surgeon here in Springfield for video taping my last angioplasty, is that it is not just the Superior Vena Cava that has stenosis. But the opening of the Atrium where my pacemaker lead is placed is where the major stenosing is located.
They have to open up the area at the opening of the Atrium of the heart. My pacemaker is a single lead device and the lead paces the Atrium of my heart. My pacemaker was placed years ago due to the autonomic nerve failure affecting the heart. Since the atrium pumps and is in motion all the time this makes it tricky to fix. They are unable to use a stent to open it up because of the pumping it would break the stent in half. Sending metal throughout my body which would be disaster.
They have to remove my pacemaker. This of itself is rarely done and there is only very few physicians that are able to extract pacemaker leads. The doctors are hoping maybe after removing the pacemaker they might, and stressed might be able to balloon the area. Also the area is bigger than the usual vein they place stents in. So the vascular surgeon is going to talk with some others and study my case more and see if there is some object that they could possibly use. Of course like he stated he will not use anything that would not work for me long term. And solve the issue. He said he is not sure they will come up with anything. The final option is to open me all the way up, open heart, and use bypass and surgically fix the top of the atrium. All options carry major risk. No option is an easy fix. As they have stated over and over to myself and my parents this is no BREAD AND BUTTER SURGERY.
Whichever way the physicians choose I will have an incision. To remove the pacemaker generator and extract the lead of the pacemaker and place a new pacemaker they have to make an incision. This incision is similar to open heart. They will have to break 3-4 of my ribs. The new pacemaker will be placed and it will lay on the top of the heart. But it is still under the skin. Or they will do full bypass surgery and open me all the way up. Both surgeries will require what could be a lengthy stay for us at Cleveland. But I have no choice if I don't fix it I have no IV access at all above my waist. I have explored other opinions than Cleveland and there are no physicians or specialist that perform this surgery that I have to have. My local heart specialist personally contacted the doctors at Cleveland Clinic.
I am asking for more help for mom dad and I. The doctors told mom that her and dad have to stay at the hotel connected to the hospital. They want them right there. And while I am in icu mom cannot stay with me. Neither can Lolli Pop. The doctors told mom the importance tho of bringing Lolli Pop with her for visits until I am in a regular room.
Unfortunately the doctors cannot give us an exact number of days or the extent of our stay. And also when I am released to the hotel with mom and dad I have to have my own room adjoining mom and dads room. I have contacted the corporate office for the hotel to inquire if they would provide a lower rate.
We have no choice if the hotel cannot give a lower room rate. Also I will have medical bills and already have medical bills even tho I have Medicare insurance I have no supplement insurance that provides coverage in Ohio at The Cleveland Clinic.
I am asking for Prayers for my family and myself and also any financial help towards the medical expenses that I will have from having this surgery and the hotel and travel expenses.
We appreciate any assistance and prayers you are able to offer.
Thank you and God Bless,
Johanna (Jo) Barrington.
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