The (Unwanted) Power of the Power Port

Blood clots...Throughout my right shoulder, upper arm and neck, including in the Jugular. None are completely blocking blood flow or anything, but the bottom line is clots are a demons that live within the beast. The most likely reason the clots formed was that they placed the power port too deep into my chest, plus the fact I am a hyper clotter. As we all know, it only takes the dislodging of a part of a clot to cause a very bad outcome. I know this, however for some reason I am not too worried. I mean we have a plan, the power port getting put in was no big deal last time, so why would it be a big deal this time? What I failed to take into account was the fact that the power port is what actually caused the clots. So removal of the clotted off port could quite easily break off part of the clot. I'm not sure if it was because I didn't want to see that fact, or just did not realize it, but it never entered my mind. Outpatient surgery... been there before.  No big deal, right? I think even Lea Ann thought that way. The reason I think she was of that mind too will be explained a little later. In the mean time I have been told to basically sit and do nothing. I'm getting very good at that. Sit in my recliner and the most strenuous thing I do is use the TV remote.

The home health nurse still comes to the house daily. She is worried enough about the clots that she starts doing blood pressures and all on the left side. The right side is where all the clots are. I am still sore in the neck and shoulder area. Stiff as if I slept on them wrong, but the feeling doesn't go away through the day as it usually would. I am told that was a side effect of the clots. Until that time, I had been told to look for swelling and redness and fever in the area. Those were the warning signs of clots. I had none of that. No redness, no swelling that could be seen and no fever in the area. All I had was stiffness and soreness. Had the port been able to draw blood it is quite possible that the clots would have gone undetected. Not good. Not good at all.

During this time, Lea Ann's father and sister, Ed and Mary, had been planning to come out to visit and check on us. This is a very big deal. They are going to fly out from Illinois to Phoenix. Why is that so big? Because Ed has never been on a plane before. He would always rather drive.  Planes were just not part of his life. I have been told that he had told his wife that they would go to Hawaii just as soon as it was possible to drive there. The issue right now was that a drive from Illinois to Phoenix takes two to three days unless you drive straight through. A flight out is about 3 hours... So flying it was for two reasons. One, they get there faster, and two, Ed had had a medical procedure done not long before and he was still recovering from that so a straight through drive wouldn't have been safe or a good idea. The fact that he was going to make his first plane trip to come out to see and check up on us is a HUGE deal. It meant the world to us both! This will be woven more into the story more in just a little bit.

Two days later, I am back at the hospital getting all checked into out patient surgery.  All the usual things are happening... Kind of. Everything is being done on the left side. Blood pressure, IV, pulse-ox... everything. In fact, they put a red bracelet on my right wrist telling them to not do anything on that side. That is understandable, but the vein they have to use in my left elbow runs cross ways.That means the IV is going across my elbow instead of down the side of it. It also means that I can't bend my arm or it will block the IV. They had tried to get the back of my hand and my wrist with no luck.Three or four sticks for an IV are enough for me, and I said so. That's why they went to the elbow. After all the preparations and the visit from the anesthesiologist, the doctor comes in. He explains what will be happening and that it will take about 45 minutes as opposed to the usual 20 since there is a removal and a replacement. Lea Ann and I both nod and understand. It is what we thought. Then the doctor steps outside the curtained off area and asks Lea Ann to come out too. This is where it gets scary for her. The doctor says that this surgery will be touchy and that she should make sure she says goodbye to me before I get taken into the operating room... Just in case. What?! Why? Well because this surgery has a good chance of breaking off a part of the clot and if that happens and it gets into the bloodstream it will be... bad. Now Lea Ann is frantic. She is all alone. None of the kids came with her because we thought this was going to be a cake walk. Now suddenly there is a good chance her husband might die on the table, outpatient surgery or not. He asked her out here to tell her so that it would not work me up. That makes sense, but how can she now not show the worry to me? She puts on her best smile and comes back into the room. She takes my hand and just stands there as we watch a little TV waiting to go in. As they come in to take me, she leans down and kisses me and says she will see me later. I kiss back and say yes she will, but I don't notice how misty her eyes are. As soon as they take me in and she is taken back to the waiting room she is immediately on the phone. The first people she called were her father and her sister in Illinois. She was frantic. Her father told her to call and get someone to get over there to be with her right now. Her next call was to the boys, specifically Bill and Eddie. They work nearby and were living with us at the time. She explains to them that she needs someone to come to the hospital... Now. To the boys credit, they are there within 20 minutes to help support and comfort Lea Ann and be there for me too, even if I didn't know it at the time. This meant the world to Lea Ann and when I found out after the fact, to me as well. Shows the love and support a family should always have. With everyone there now, they sit and wait.  A little over an hour later I am in recovery. The port was successfully removed and the new one put in... and most importantly, NO complications. This is when Lea Ann told me about her little conversation with the doctor out in the hall and why the boys were at the hospital when I got out. I am glad they didn't tell me before hand. It would have worked me up into a little tiny ball of worry and nerves.

Now start more new medications. Blood thinners. I have to start taking Warfarin pills. On top of that I have to get two shots a day in the belly. The shots are Lovenox, another thinner. The hope is that the thinned blood will assist in the erosion and disappearance of the clots. I'm still allowed no strenuous activity which is nixing physical therapy for now. I am told to be EXTRA careful, too. Even a nose bleed right now could be serious because now my blood will be thinner and it may not clot as it should. I could lose a lot of blood and pass out or worse. They are setting me up to go to a Coumadin Clinic daily to monitor the clotting factors in my blood and to modify the medications accordingly to keep it within limits and not get out of control. I will start going to that clinic in a week or so. We have to get the thinners into my system first. Just be careful and try not to cut my self or have a nose bleed or even get a bruise. I also have to watch what I eat. Green leafy vegetables give Vitamin K with counteracts thinners, so I have to stay away from those. Wow, they are serious. I guess this is a bigger deal than I thought.

Everything seems to be going OK for the next couple of days. Then the nose bleed started. I have had issues with nose bleeds ever since I was a kid. The oxygen was drying out my nasal passages and when I scratched it, it started to bleed. We tried to get it to stop and did get it to a few times. Once by stuffing Kleenex up my nose (found out later that is not a good idea.  It can actually cause it to bleed more when you take the Kleenex out, it rips off the new clots and starts the bleeding all over again). Then it started again and I pinched it off and used an ice bag and it stopped again. The next day they send me to a lab because they need to take some blood to get what is called an INR count. This counts the anticoagulants in the blood. The higher the number, the thinner your blood is. Typical INR in people not on thinners is around 1.0. People on thinners are shooting for 2.0 to 3.0. The Coumadin Clinic helps to monitor and adjust the medicines to keep it in that range. I get the blood taken and they make sure I stop bleeding, then we go back home.

The next day is when Ed and Mary are to arrive in Phoenix.  Early that morning (at like 7:00am), we get a call from the chemo doctor. It is rather odd for a doctor call that early in the morning, and we know what visuals that conjures in most people's minds. She has just gotten the blood test results and wants to know where we are in relation to the nearest hospital. Why? Well, my INR was high so that they want me to go to the Emergency Room. They will call that ER and let them know we are coming. We say OK and Lea Ann and I leave soon after, scared as hell once again. We reach the ER and they take me directly back into a room. They start asking me if I had been bleeding, and it just so happens that I had been having another nose bleed, so they give me a clip to put on my nose for direct pressure. In the mean time, they have taken more blood and now there is a girl in the room who has started filling out admission paperwork. We start asking her questions, but she can't answer them. She is just doing what she was told. The doctor comes back in, so we ask him. I am to be admitted into the hospital. My INR is so high they are going to have to give me plasma transfusions to help spur coagulation in my blood. WHY?? What is going on?? We just has blood work done. The lab results that came back from the blood work yesterday show that my INR was over 14.0. WHAT?!? That has to be a misread doesn't it? If it really were that high wouldn't I be bleeding out my eyes or something? They take more blood and are rerunning the numbers as a double-check.  A little while later the doctor comes back in and says their lab shows a current INR of 7.8. Still Exceptionally high, but not high enough to have to be admitted. They are going to give me some Vitamin K. I take the vitamins then we have to wait for them to take effect. During this time Ed and Mary arrive at our house. They have to just sit and wait for us to get back, but Lea Ann is giving them updates and information as we get it too. We end up sitting and waiting in the ER for another four hours waiting my blood work to show some response to the Vitamin K. Once there is a drop in the INR, they release me and we can head back home.

Once we get back home, we greet Ed and Mary. We are SO glad they are there and we let them know it. Ed had undergone a procedure not long before they left Illinois that had left him sore and having to walk with a cane. He is in remission from bladder cancer. They stayed with us for several days. Talking and listening and laughing and even going out. We went to a local steak house and had a family meal there. It was one of the first times that I had gone out to do anything outside of medical stuff since my surgery. We even took some pictures. Ed and Mary's visit was a huge shot in the arm for both of us. That, added to the fact of how quickly the boys responded to Lea Ann's call from the hospital that day, just showed again how a family is supposed to come together and work as a team to support each other in times like this. I will never forget that. My memories may be a bit out of sequence or a little off here and there, but they are still there. I love them for it.

Here we thought we were through the worst of this, and now we're told that anything I might do could now make me bleed out, or dislodge a clot, or any number of other things that could kill me... Will this ever start getting better?

Please check back soon for the next entry!  I appreciate your sharing the journey with us!