Using the PICC line

When I left the hospital I went directly to my house so that I could meet the nurse that was going to teach me how to use the PICC line. I had a friend that had one in the past and while I was a little bit unsure about using the PICC myself I sort of had an idea of how it worked. I got to my house just as my antibiotic and supplies were being delivered and the nurse came shortly thereafter.

The nurse explained that I really would not have anything to worry about as far as giving myself the medication because it was all written down for me and she was going to also teach me a simple way to remember it. She told me that I would be using the 'SASH' method to push the medication into the line. Using that method, I would first flush the line with normal saline, then would administer the antibiotic, then I would need to flush the line with saline again and finally I would need to use Heperin, a blood thinner so that the line would not clot.

Once she told me about the SASH method I was more confident because it sounded relatively simple. At that point the only part of the entire situation that had me concerned was the schedule that I would need to adhere to. The hospital always seemed to tell me that it was time for my antibiotic at the strangest hours, but before I was discharged the infectious disease doctor told me that I could adjust the schedule so that I could get some sleep. The nurse and I discussed that and altered the schedule slightly so that after the first couple days I would no longer need to wake up in the middle of the night to do it.

Once she had told me how to administer the medication it was time for me to try doing it, with her watching and available if I should need any help. I was able to do it absolutely fine and with minimal questions. After the dosage was administered she had stuck around for about an hour to monitor me for signs of a reaction to the medication. I did not have a bad reaction so she left, saying she would be back the following day to change the dressing.

The next morning the visiting nurse called me to schedule her visit so that she could again, re-admit me into their service, and so she could change my Wound VAC dressing. The visit was scheduled for a few hours later so that I would have time to give myself my antibiotic and could also shower. When I was in the hospital the surgeon had told me that he had placed antibiotic seeds into the wound and that they should be left alone, but that I was allowed to shower. Well, when I got out of my shower I was disturbed to see something that I can only describe as the white candies that are ontop of Sno-Caps chocolates laying on both my shower chair and on the bottom of the tub. I knew that the nurse was going to be arriving at any moment so while I was worried about what I had seen I did not dwell on it because I was confident that my nurse would be able to handle the situation. The nurse arrived and I immediately asked her to look in my shower so she could see what had happened. It turns out that what I was seeing were the antibiotic seeds. We called the office and explained what had happened, but that the nurse still saw some left in the wound. We were told that with the other medication I was taking that while it wasn't ideal that they had fallen out it was not anything to be overly concerned with. The nurse changed the VAC dressing and we scheduled her next visit for a few days later.

Again a Trip to the Operating Room

CAUTION!!!! This post has what may be considered a graphic photo!



I went into the next surgery fully anticipating the surgeon to remove a small portion of the bone. I was obviously upset that the infection had penetrated into the bone and also curious how it had managed to happen while I was on the Wound VAC.

This surgery was obviously going to be more invasive than the previous, so I was more heavily sedated for the procedure. As such, I do not remember anything until I was waking up in the recovery room. When I woke up I felt fine and was wheeled into my room, with the Wound VAC therapy already having been resumed. Being that the infection was in the bone I would need to be admitted to the hospital for a few days so that the infection could be grown in a lab, so that we could ensure that I was treated with the proper medication. In the meantime I was treated with a broad spectrum antibiotic intravenously.

When I was more alert a bit later that day my surgeon came in and explained that he did take a portion of the bone and while he was looking around he asked for a consult with one of the infectious disease doctors. The surgeon is basically responsible for making sure the wound closes, while the infectious disease doctor's responsibility is to treat the infection so that it would be able to close without all sorts of bacteria in it.

I met the infectious disease doctor and was comfortable with him from the beginning. No alarm bells were going off in my head about anyone that was now treating me. I was confident that with the combination of the two doctors that the wound was getting proper treatment and it would close, with time.

Around day four of my hospital stay the two doctors came into my room and said that they were going to discharge me the next day but that I would need to have something called a PICC line inserted first. The PICC line is a peripherally inserted central catheter. A small tube was to be inserted into my upper arm and threaded up into a major vein of the heart and is used to deliver antibiotics on a long term basis.

The next day a nurse came in to get me so that my PICC line could be inserted. Surprisingly, enough I was not especially nervous about this procedure, even though I would be awake and completely aware of the entire thing. Although the PICC line felt uncomfortable going in I would not necessarily call it a painful experience.



After my PICC was inserted I was brought back to my room to get some instruction on how to use the line. It turns out that after a visiting nurse did the initial dose with me that I personally would need to administer my medication myself. That was the only part that made me uneasy, but I figured that it would not be allowed if it weren't a relatively simple thing to do. I went home with the Wound VAC and PICC line and was told that a nurse would meet me at my home to administer the antibiotic with me and to teach me how to do it for myself from then on. The nurse for the PICC line would only come on a weekly basis to change the dressing and to draw labs to monitor the infection.

Frustrations

Due to an error with the paper work being sent for the Wound VAC we were unable to begin using the Wound VAC until almost a week later. I was disappointed that it was going to be postponed but I realized that there was nothing I could do so I just accepted the fact that I needed to wait.

When the VAC finally arrived we began the VAC therapy. It was approximatly a week later that the surgeon wanted to see me again so he could check on how everything was going. The appointment with the surgeon was uneventful and all signs were pointing in a positive direction. The surgeon then explained to me that he was going to be out of town for a few weeks and that I should make an appointment to see him in a month.

During that month I continued to use the Wound VAC and have a few nursing visits a week so that the VAC dressing could be changed and so that the wound could be monitored. Everything with the wound seemed to be going well.

By this point the wound was not what was causing me the most stress. The Clinitron At-Home bed was a different story though. The part of the bed that holds the 'sand' is covered by a polyester sheet, which I did not find to be very durable at all. After having had this bed for so long I was finding that it seemed to be tearing which was causing the sand to go everywhere. This was not only uncomfortable to sleep on but I found it nearly impossible to eat while I was in bed. It felt like even if I had just washed my hands that they had a gritty feel to them. When I called the company to ask what to do about it, I was told that because of insurance I was no longer renting the bed so the replacement cover was not going to be replaced for free. Figuring that a piece of polyester really couldn't cost that much I inquired as to the cost. When they told me how much it was going to cost I asked if they had any suggestions how I could fix it without replacing it. I was basically told that I should try to use either electrical tape or duct tape over the tears. That suggestion was fine but only for a very temporary basis. The heat of the bed all but destroys the adhesive on the tape so it basically needed to be re-taped a few times a week.

sand on the side 

sand going up to the top

While this was incredibly frustrating I kept reminding myself that it really would be only needed temporarily, due to the fact that I was on the Wound VAC and so the wound should close. Things seemed to be going well until about a week before I was supposed to see the surgeon. That week I was starting to feel more pain from the wound. I had been told previously that sometimes pain is due to healing so I was not super concerned about it. The other thing that kept me from worrying was the fact that the pain could be relieved with medication. I figured that if something were really wrong that the pain would be more constant and that the medication would not be as effective in stopping it. I mentioned the pain to my nurse during a couple visits and she was only mildly concerned about it based on her opinion of how the wound looked.

I did not really consider making a phone call to the wound care center until a couple of days before my appointment was already scheduled for. I figured that I had dealt with it and it wasn't very severe so it could wait until I saw my surgeon. The day of my appointment arrived and I mentioned to the nurse and the surgeon that I was experiencing some pain. When the surgeon examined the wound was when I felt a whole bunch more pain. It turns out, that bone was now exposed and that I would need surgery. The appointment was on a Tuesday and he looked at me and basically said, 'ok, Friday or Monday which works for you?' I chose Friday being that I figured based on the options I was given that sooner was probably better than later.

Edge Trimming Surgery

While I was waiting for the day of the surgery to arrive I tried not to think about it very much at all. Not because I was nervous, but because I was excited about the possibilities and I did not want to feel let down if things did not go exactly as planned. While I believed that the surgeon could close the wound surgically, he had warned me that based on the location of the wound and just by moving around that the sutures may not actually hold it.

The morning of the surgery I was cautiously optimistic. I went in and met with the surgeon to go over all of the last minute details. That entire conversation was fine, I had a very good feeling that I was where I was supposed to be, being treated by the person that was supposed to treat me so I went into the surgery with absolutely no hesitation.

Being that this was a relatively minor procedure, the surgeon and I had discussed the type of medication that I was going to be given so that I would not feel what was going on. We decided that instead of undergoing general anesthesia that I would just be given "twilight sedation." When they gave me the medication, I basically fell asleep and knew nothing until a little while later when I was roused by an uncomfortable pillow. I asked the person at my head to move it and that was done without a problem. Once that was moved I did not feel any pain, yet I was not groggy enough that I was falling back to sleep so I just laid there and let whatever was happening continue.

Eventually, I asked the person at my head how it was going and what was going on. I was told that it was almost done and that the surgeon was closing the wound, pretty much at that moment. I was really happy when I heard that news. I was wheeled into the recovery room shortly thereafter and pretty soon after that my family member was allowed in to see me. I was fine by then, I felt spectacular. I was given a sandwich and basically being that I was able to eat it without any problem, they discharged me to my home.

I was sent home, with instructions to stay off the wound, and stay in my Clinitron bed except to get up and go to the bathroom. I went straight to my bed when I got home and pretty much did not move until many hours later when I had to go to the bathroom. Getting up out of bed was no problem at all and did not really scare me but when I was getting back into bed I suddenly saw blood, it seemed like it was a lot so I called in a family member to have a look at the situation. My clothes were bloody but it was not pooling, we got in touch with the doctor and he basically said that it was not anything to be super concerned about, especially being that my visiting nurse was going to see me first thing the next morning.

The next morning, when my nurse came I explained to her all that had gone on during the surgery and about the blood situation that had happened once I got home. She then took a look at the surgical site and said that while their was a lot of blood on the clothing I had taken off the night before that the site looked very good and that it was awesome to look at me and not to see a giant hole. She covered the wound and said that she would be back a few days later to change the dressing again.

I spent those few days in my bed and not really moving at all. I was determined that if this wound wasn't going to stay closed that it would not be because of anything I had directly done or not done.  When my nurse called me to schedule her next visit we discussed me getting up to take a shower immediately before her visit and we decided that based on the discharge instructions from the hospital that that would be okay. When she saw the site after my shower she said that it still looked really good but that one of the stitches was beginning to pull but she did not think that anything was wrong, She just warned me to be incredibly careful about it, let me tell you, she did not have to warn me twice. When she called a few days later about scheduling the next visit I she said that again I could take a shower right before she arrived. I asked her if she really felt it was a good idea based on the fact that the stitches were beginning to pull at her last visit. She said that it was okay, so I hesitantly got up and took a quick shower.

When she came and looked at the wound she saw that a bunch of the stitches that had been holding the wound closed that pulled and were no longer doing any good. I was supposed to see the surgeon the following day so all she did was redress the wound and made a call into the office to give him a heads up about what was going on. I was obviously not happy with this news that I was hearing but I was warned that this was a possibility, along with warning me about that possibility the surgeon also said that he was confident that even if it did not stay closed after the surgery that once the edges were removed that it would heal better than it was before.

The next day I met the surgeon at his office so that he could see what was going on with the stitches. When I was in the car on the way to his office I kept feeling some drainage, so I had a feeling that it was not going to be spectacular news. When he looked at it, sure enough the stitches were doing no good at all so he removed them and packed the wound with calcium alginate dressing. I was not really happy that I now had an even larger wound that was open. Yet I believed that it was the thick rolled edges that were preventing it from closing before and that being that those were gone that my body would start to heal it again.

The surgeon then asked me if I would really object to having the Wound VAC started up again to get it going. At that point I did not necessarily care what he said we had to do, I was going to go with his suggestions, based on the really good feeling I had gotten about him all along. I left the office and called my visiting nurse when I got home to bring her up to speed on what all had gone on and what direction we were thinking about going in. The visiting nurse was not happy that the stitches had to be removed but we all new it was a possibility so dwelling on it was not going to help anyone.

Being that this was now a Saturday afternoon the nurse wanted to get the Wound VAC orders as soon as possible so that the company could ship it to me so we could begin the therapy. She asked me for the surgeon's phone number, she called the surgeon, called the VAC company and then called me back. She explained that she had given all of the necessary information and that the VAC would probably arrive on that Wednesday so she would just dress the wound the same way the surgeon had until the VAC arrived.

A Positive Gut Feeling

I spent that week continuing to do what we had been doing. We were packing the wound with the calcium alginate, and then just putting a dry dressing on top. Knowing by then, not a whole lot of the healing process would be effected by anything. While, I was unhappy that we seemed to just be wasting time I tried to wait patiently for the appointment with the surgeon.

The day of my appointment with the surgeon I went into it positive that something good HAD to come from it. I was done with seeing people that were just wasting my time, and I swore that if I even got any inkling of a clue not to trust the surgeon that I would not continue to see him as I had done with the first surgeon.

I went in and met with a nurse first and proceeded to give her the background information on the wound and then waited for the surgeon to come in and examine the wound. When he came in and did the examination he said that yes he agreed that the edges did need to be removed. During the exam he also took a culture and a tissue sample from the wound to make sure nothing was going on beyond what we could see, that was preventing the wound from healing. I was told to go back to see him the following week so that we could discuss the test results and the options I had.

I left the appointment and called a family member to tell her how the appointment had gone. This was the same family member that I had called after the initial surgical appointment two years earlier. She said that I sounded more upbeat and positive about the situation than she had heard me in a very long time. She was right, I was positive that things would start going in a much better direction. I have no idea why I thought that, other than to say I had an incredibly good feeling about the wound care center and the surgeon.

When I went back a week later the surgeon explained to me that the cultures did show an infection but nothing that would have prevented the wound from closing. He prescribed the same Bactroban cream that I had been on previously to treat the infection. He also said that surgery was necessary to get the edges of the wound off and asked me when I was thinking I would like to have it. Being that I had been living with this wound for over two years with virtually no change, I had decided that I was going to go to a baseball game three weeks later and so I asked if it could be after the game. I was told that that was fine, and that it was probably the soonest it would be able to be scheduled anyway, so to go and enjoy the game. I was told to call later and schedule the appointment and that being that it was going to be a few weeks away to call and schedule a regular appointment with him as well sometime between then and whenever I chose to have the surgery.

I called and scheduled the surgery for the day after I would attend the baseball game.  I went back to see him about two weeks later to discuss the surgery more in depth, and so he could check the wound to see how it was doing. When he looked at the wound he did not notice much of a change, which while being somewhat disappointing was not really a surprise. He then went on to explain that during the surgery he was going to remove the thick rolled edges of the wound, he also said that he felt he may be able to just surgically close the wound at the same time. That was somewhat surprising yet I thought that it would be awesome if that were actually the case.

When I got home and explained to friends and family what was going on they were all excited that I seemed to have finally found a surgeon that made sense to me and that I felt I could communicate with. While I was super excited about the possibility that he may be able to close the wound it was not something that I allowed myself to really focus on, purely so that I was not disappointed if that were not the case.

A Fresh Set of Eyes

My visiting nurse and I called the wound care center that had opened in my neighborhood and explained that I needed to be seen for a second opinion and generally what had been going on. I was able to get an appointment the following week so we continued to treat the wound as we had been with the Prisma.

The day of the appointment with the new doctor I was optimistic that something would be done to help this wound. I went in and originally met with a nurse to give her all of the background information that she needed. The nurse looked at the wound and said that she saw what I meant about the edges being very thick and rolled and that she would be back with the doctor in a few minutes.

When the nurse came back in with the doctor we both explained to him what had been going on and for how long (25 months). When the doctor looked at my wound he completely agreed that the edges needed to be removed for anything to progress. I thought it was awesome that finally a doctor was being reasonable and seemed to have knowledge about how wounds heal.

He also mentioned that I may want to consider 'flap surgery' to close the wound. That had been mentioned to me previously, at the first wound care center. That surgery seemed pretty extensive and also by the time it was mentioned by the first surgeon, I no longer trusted her. So there was no way that I was going to consent to another surgery with her, especially one that extensive.

I explained that it sounded sort of extreme and that I wasn't too sure how I felt about it, but I most definitely did want to do something about the edges of the wound. That is when they explained to me that while the wound was surgical, they did not actually have a surgeon that worked with them so they would have to refer me somewhere else. When it came time for them to give me a referral the nurse gave me the name of someone that she knew and trusted completely. She said that he was very good and that she had confidence that he would be helpful. Until I was able to get to, what would end up being my third opinion, they explained that basically it did not matter what we used in the wound. They had some of the calcium alginate dressings there so they used that and sent me home.

I left that appointment feeling like I had maybe gotten to the turning point. Based on a new referral to a surgeon that this wound would be treated effectively and I could move on with my life. When my nurse came the following day to change the dressing I told her all about what had happened the day before and that I was given a name and number to call. She said that it was great that we had left the first wound care center. That is when I realized that the appointment would need to be cancelled. I was a chicken and did not want to call and cancel it myself so I asked my nurse to do it. It was done in about two seconds. After we cancelled the appointment a new one needed to be made with the surgeon I had been referred to. That was scheduled for the following week.

My Breaking Point

Once we stopped using the Silver Nitrate we went back to using the same Prisma dressing that we had been previously using. I was displeased with this decision because I believed that the wound care nurse was accurate when she told me that the wound would not heal if we didn't do something about the thick rolled edges. Although, I disagreed with the surgeon's instructions I still continued to see her for my wound care. Despite the fact that my visiting nurse was irate with my choice to do so.

At one of the last appointments with that particular surgeon, she did her exam of the wound and explained to me that it was now bigger than it had been in the past few weeks. At that point I had no idea what to think other than that this was getting really ridiculous. The surgeon then asked me, in an accusatory tone what I was doing differently and said that I "had to be getting out of bed more often." I explained to her that I was remaining in the Clinitron bed except for about half an hour a day, and that the half hour was spread out through the entire day. She did not seem to believe me when I said that but there was nothing I could do to convince her. This was absolutely ludicrous, I could not believe that my surgeon now did not believe me when I told her that I honestly was not doing anything differently. 

Any one else that was in a situation like that probably would have made that the final appointment with that particular surgeon. However, I don't always do things the way everyone else typically does, so I made an appointment to see her again the following week for her to check on the progress. The visiting nurse and I continued at this point to do the Prisma dressings that were very clearly not going to help. By now I was rapidly approaching my breaking point with the surgeon and the wound in general. 

I had at this point wasted approximately two years of my life waiting for this wound to heal. I had not really spent any time out of the bed except for doctors appointments and holidays and one concert, since the wound was discovered. I was beginning to look forward to the doctors appointments, purely so that I could go outside for a little while. From my house to the car, from the car to the office and then back home again. Big whoop, yet I was going outside so I didn't particularly care where I was going or what I was doing. 

The following week I went back to the doctor rather fed up with how everything was being handled. The doctor looked at the wound and its measurements and it had not gotten any smaller, yet it hadn't gotten any larger either. I was happy that it was not larger but that is when I realized what the surgeon was doing, she was looking at the wound and shouting "Why, why aren't you closing yet Why!?" directly to the wound itself. I could not believe that she was actually saying this, and then to shout it directly to the wound, had this woman lost her mind? I was also peeved because I felt like I knew why it wasn't closing and it all had to do with the edges of the wound having gotten so thick and rolled. Her opinion clearly differed from mine and while I understand that, I did not feel respected when I explained my point of view to her. I was instructed to go back to her yet again in another week. 

I never ended up going back to see her. The shouting at my wound made me loose any shred of respect I may have had toward her and there was no way I would be treated by her any longer. I went home from that appointment angry at the surgeon and partially at myself for sticking it out with her for so long, despite all of the signs that I was given even at the beginning. I distinctly remembered calling a relative after the first appointment with the surgeon and explaining that I had a really bad feeling about her, although I couldn't put my finger on just why. I decided to channel my anger toward finding a way to close this wound so that I could have my life back. When I got home I called my visiting nurse and told her that I was finally done with that surgeon and asked if she could she recommend a place for me to be treated. While the nurse was not at all happy about how my last couple appointments had gone with that surgeon, she was happy that I was finally beginning to see the light. 

The visiting nurse made a few phone calls to get some suggestions from her colleagues and then called me back. She explained that during the time I was treated by a wound care center in the neighboring town that one had opened in my neighborhood, just minutes from my home. She had heard some very good things about them and I also felt that I didn't have anything to lose by allowing a fresh set of eyes to look at the wound. Maybe some progress would be made, eventually?