Sorry this took so long to put together. I hope this gives people a better idea of what happened through all of this. Jake
On Monday, December 15, Becky went down to Hopedale’s emergency room after I got off of work. We thought that it was going to be a quick, confirm it’s a kidney stone, get a pain med kind of trip. Well, that turned into something a whole lot more. We spent the night at Hopedale still thinking that it was going to be a short trip and then we would be sent home the next morning. Tuesday morning Dr. Matt got a second x-ray and cat scan to see if the stone had moved any, but when he compared the scans, nothing had changed. So, he arranged for Becky to be transferred to Methodist Hospital the next day so the stone could be extracted.
We got to Methodist about 10:30 on Wednesday, and by the early afternoon, she was going into surgery. Becky’s parents came over to be with her because she was really nervous about going into surgery, and understandably so. Surgery is very hard on completely healthy people, but when you add in her complications from CF, it is a scary event. With her CF, it is basically the shorter time you’re under, the better. The three of us stayed with Becky, calming her down while the doctors communicated some last minute information with her doctors in Iowa. The surgery was meant to be a 5 minute in and out procedure, and the anesthesiologist assured us that it was a literal 5 minutes. When she went into surgery, we were escorted back to the surgery waiting room, where a receptionist checked us in and handed us a pager, which would alert us when there was an update. As was expected, we received a page just twenty minutes after she went into surgery. We went up to the front desk and the receptionist told us that the doctor would talk to us in the first consultation room, which were these rooms just off the waiting area where doctors could talk confidentially with family members. We waited about five minutes for the doctor to arrive, and when he did, we received news that was not expected.
The doctor told us that the stone was very large, somewhere between six and eight millimeters. It was so large that they could not get anything around the stone to try and pull it out, and when it is that large, pulling it out could cause damage to the ureter, which is the tube that goes from the kidney to the bladder. He said that all he was able to do was get a wire beside the stone, and when he got through, puss started to come back through. This was a bad sign. He told us that when there is puss behind the stone, the patient has a fifty-fifty chance of survival. What happens is urine that is behind the stone has nowhere to go so it sits in the tube, which is a breeding ground for bacteria. If the bacteria gets concentrated enough, it can back up into the kidney and then into the bloodstream. Once it is in the bloodstream, there is no chance for survival. The bacteria moves too quickly for any antibiotics. The only option was to insert a tube from her back into her kidney to drain the puss that is behind the stone. Then, they can combat the infection and hope it hasn’t spread into the bloodstream. Once I consented to the surgery, we were immediately transported to the Interventionary Radiology Surgery area. The doctor who was doing this surgery was a specialist in minimally invasive surgery. He would use cat scans and xrays to fed the tube into her back, through her kidney and into her ureter. When we got close, we were told that Becky had requested to see us before she went into the second surgery so we were directed over to a gurney by a set of double doors that was surrounded by people in surgical scrubs. We only got to see her for a minute or so before they had to take her away, and then we went into the waiting area for the longest wait ever, which was actually a little over an hour.
When the doctor came back out after the surgery, he said that the urine that he collected out of the kidney did not look too infected, which was the best news that I had heard all day. He sent the sample off to the lab to have it tested for the type of bacteria that had grown in the urine. I was so antsy to see Becky that I couldn’t sit down again. Finally, Becky was moved back up to her room.
After having some time to reflect on what happened, I was amazed because God, once again, spared Becky. When a surgeon says that the puss coming out of a hole “does not look good”, I’m pretty sure that he knows what he is looking at. But then, the second surgeon says that the urine does not look too infected, he knows what he is talking about. And the ultimate God-incidence, the lab report came back and stated that there were no bacteria in the urine. Only God can take a puss that “doesn’t look good” and turn it into no bacteria at all.
Once Becky was back in her room, little did we know that we had a whole other set of problems that would arise. Becky and I were really confused on what was happening at that point because the stone was still in her ureter, she now had a tube coming out of her back, she was doped up on pain meds so she was sleeping most of the day, and nobody was telling us what was going to happen next. In the next couple of days, we saw probably ten different doctors. They were split into three different groups of doctors. One group was the urologists, who were watching everything related to her kidneys and the kidney stones. The second group was for general medicine. They monitored everything else that wasn’t related to the kidneys, which meant they would keep an eye on her CF and diabetes. And the third group was the two surgeons who had done the surgeries that she had already gone through. They were the only familiar faces that we really were able to recognize. There were several frustrations in dealing with these groups of doctors. First off, we rarely would see the same doctor twice. In the five days that we were there, we would see a new doctor who would make the rounds for that department, and each time there was a new doctor, the same set of questions would be asked. It was quite obvious that there was little to no communication between the doctors, which did not give us a great deal of confidence in them.
The general medicine doctors, in particular, were alarmingly incompetent. The morning after Becky had the two surgeries, one of the doctors from the general medicine group came to talk to us an introduce himself. He explained that he would monitor everything that wasn’t kidney related and so he was asking general questions about health history. Then he started asking about her CF. One of the first questions he asked was “how long have you had cystic fibrosis?” Becky and I were both shocked and scared. For those who are not as familiar with the disease, cystic fibrosis is a genetic disorder…which means you are born with the disease. I could understand if the doctor was not very familiar with the disease, or didn’t know how to treat the disease, but if the doctor who is supposed to be monitoring the disease doesn’t even know what it is, I’m not going to trust anything that he recommends.
The next morning we were in the same situation that we were in a couple of days ago. The urology docs had mentioned about five or six options that we had in terms of dealing with the stone, but they never stated what would be the best choice in our situation or what they were planning to do. They approached it as here are the choices but we’ll let you make the decision even though you don’t know as much about the situation. I felt like we were in that commercial where there is a doctor talking on a phone and he is talking somebody through a surgery, and they show the person on the other end of the line is a guy with a steak knife in one hand and the phone in the other, and he says, “shouldn’t you be doing this?”. So we were both confused and frustrated. We really didn’t know what to do. Later that same morning, we talked to the physician’s assistant to the general medical doctors, and she just asked a couple of questions about how Becky was feeling and about how her pain was doing, then she left. About a minute later, she came back and nonchalantly said that she forgot to mention that Becky’s hemoglobin was low and that she will probably need to get a blood transfusion. The assistant would have walked right back out the door at that moment if we didn’t stop her to ask her a couple of questions. We found out that her hemoglobin was right at the borderline of being too low so we decided to wait and see if it would come back up on its own. At this point, Becky just wanted out of that hospital. Neither of us trusted the doctors there, they had no idea what kind of problems could arise from her CF, and they didn’t seem to know what they were doing. All these complications seemed to be coming up and we just wanted to go to Iowa City where we know the doctors are capable and her CF docs could monitor what was happening.
So we told the nurse we were going up to Iowa and asked if Becky could get a medical transport. We found out that because Becky is on Medicare, the medical transport would not be covered because it would not be considered medically necessary because the hospital where we were at could do everything that another hospital could do… and if you believe that I’ve got a nice bridge in Brooklyn that I’d like to sell you. Becky’s mom was with us so she was making the arrangements in Iowa City while we tried to get everything with doctors sorted out, which was a hassle because there was a time crunch. This was the night that huge ice storm came through the central part of the US. There were ice storm warnings out for most of central and northern Illinois and all the way through Iowa. We had about four hours to get Becky released and then make the two hour drive up to Iowa City. Becky’s mom got in touch with Becky’s CF doc up in Iowa and he was very concerned about what was happening and about us trying to beat the ice storm, and he let us know that because it was a Friday, there would not be much difference between staying where we were and going up to Iowa at that point because either place would simply continue the same routine through the weekend and then try and do something on Monday with the stone. Once we knew that, we decided to stay for the weekend and then go to Iowa on Monday.
Later that night, Becky’s nurse was in her room hooking up an antibiotic into her IV and was just reviewing everything with Becky because she had just started her shift. She left to go get something and when she came back, she told us that the latest blood work had come in and her potassium came back high. This is something that can really mess with your body because potassium is what powers your heart. If your potassium is too low or too high, it can throw off your rhythm. So Becky had to drink this nasty brown liquid, which looked like some dirt, clay, and sand were all mixed together and then some NyQuil was thrown in for flavor. The liquid would help bring the potassium back down but Becky also had to wear a heart monitor overnight just to make sure that it had not affected her heart.
About an hour later, the nurse came in with a bag of fluids, which confused us because she had just changed the bag not that long ago. She told us that there was potassium in her bag so the doctors wanted to switch her over to one without any potassium. It didn’t really sink in until later that there was potassium in the bags of fluid that had been going through her IV for the last 3 days. Also, because she had the kidney stone, the fluids were being pushed through at a high rate, 100mL per hour. This just made us mad. The doctors could have potentially damaged Becky’s heart if they had kept pumping potassium into her body. The next day, Becky asked one of the doctors in the general medicine group if her high potassium could have something to do with the blood pressure medication that she was on. She is on the blood pressure medication because of her kidneys. Apparently it helps reduce the strain on the kidneys somehow, I don’t really understand it. Anyway, the doctors response was, “You’re blood pressure wouldn’t have anything to do with this.” Becky then had to explain that one of the side effects of the blood pressure medication was potential potassium imbalance. The doctor then had to look at Becky’s chart. And his witty reply…”Yeah, that might have something to do with it.” It was very comforting knowing that the doctor did not have a clue what he was doing.
Later on that night, Becky asked about her blood sugars because they had been all over the place, her sugars were running between 250-350. She had not been on her normal insulin regime, which the docs would not put her back on because she was on the surgical floor, and that’s just how they did it on that floor, but even with that, it still didn’t make sense that they would be running that high. The nurse was also confused and thought about it a little and said that she would ask about that. When she returned, she informed us that her meds had been mixed in dextrose, which is standard practice for IV medications; however, for diabetics, they run meds through normal saline so their blood sugars do not spike, like Becky’s had been doing. At this point, we were completely frustrated with the hospital and were just waiting until Monday so we could go up to Iowa. To add insult to injury, because the doctors were pumping so many fluids into Becky, her blood had actually been diluted, which would make the hemoglobin seem low, which means that a blood transfusion should never have been on the table. As soon as they dropped her fluids, her blood count went back up.
After all that, the weekend was fairly uneventful. Becky was still sleeping a great deal because her pain meds were knocking her out so I kept myself occupied with TV and magazines. Looking back on the decision to stay, we were very thankful that we did not try to beat out the storm. When Monday rolled around, we were ready to get out of that hospital. Our biggest concerns were making sure that Becky would not be in pain on the trip and making sure we got up there safely. For the pain, the nurse was able to get some vicodin for Becky right before we left, which was able to get her up there under manageable pain. The drive up there was a little scary at times. First off, the temperatures were bitterly cold. I think that day had a high in the single digits. There were also all kinds of cars that had gone in the ditch, and we even saw a couple of semis that had rolled over. The roads were clear for the most part, but there were a couple of areas where there was some patchy ice, but we were able to make it safely.
Once we got there, we were again a little confused as to what was going on. Shortly after we got up to Becky’s room, her CF doc came in to see how everything was going. We were under the impression from the previous communications that we would go up there on Monday and get into surgery to deal with the kidney stones. Well, when we got there, we found out that there were not any openings for surgery that week because it was the week of Christmas, which was a little frustrating. But once we talked to the urologist, he said that because of the bad weather that was yet to come, there was a possibility for cancellations. So in the mean time, her regular CF doc wanted to get Becky as healthy as possible for the surgery, which helped with the frustration level. The unfortunate part was that in getting Becky as healthy as possible for surgery, we would have to stay in over Christmas, which was, amazingly, the first time that she has ever had to be in over Christmas.
When we were able to talk to the urologist again, he told us that they had an opening on Jan. 6th , which he had penciled us in for. He convinced us this was a good idea to take this because the next opening wasn’t until the 26th of January. So we opted for the 6th. When he was going over the basic routine for the surgery, he mentioned that the surgery would be done under a general anesthetic, which caused both of us to tense up. Under general anesthetic, they have to intubate, which is where they stick a tube down your throat and put you on a breathing machine so that you can breathe during the surgery. This is what happened a couple of years ago with her ICU incident so the thought of her having to be intubated was scary. So we mentioned to him that the other docs we had worked with in Peoria were planning to do this under a local and asked to see if that would be possible. He said that he would ask about it.
The next day, the urologist got back with us and told us he had talked to the surgeon we were going to be working with and said that it is possible to do this under a local, but it is not recommended. Under a local, there is potential for the patient to move, which could result in the wall of the ureter being punctured. At that point we still wanted to go with the local because of the complications the general would introduce with the CF. A little bit later the anesthesiologist came in to talk about the surgery, and he knew that we wanted the local so he stoically mentioned that if the local didn’t work then they’d have to go to a general anesthetic. This again freaked us out because it felt like the only people that cared if this was done under a local was the two of us. After the anesthesiologist left, we were able to talk to Becky’s CF doc again, and he was able to calm us down. He told us that he talked to the urologists that were going to be doing the surgery, and could understand their point about doing the surgery under the general. He then told us that the general is not necessarily a bad option because the main concern with doing the surgery is actually being immobile for a long period of time. The immobility actually is worse than the intubation because it allows for mucus the clog up the lungs more. So the more important issue was how quickly Becky would be able to get up and move around after the surgery, and with the local, it would actually take more time to recover from that than the general anesthetic. At that point, we felt assured that the general anesthetic was the best option.
After another week in the hospital, we both wanted to get out for a while. We had already been in over Christmas, and the plan seemed to be for Becky to stay there until the surgery, which was another week away. Neither of us was really fond of the idea, and we had some family back home that we hadn’t been able to see because of this. So we talked to her CF doc and convinced him to let Becky go home for the week before the surgery.
The surgery was scheduled for Tuesday, January 6th, so instead of trying to drive up the morning of the surgery, we drove up Sunday night and stayed at a hotel, which worked out really well. The day of the surgery went amazingly well. We were told to check in about 10:30 that morning. We got there about 10:30 and waited for probably 20 minutes before they took Becky back to get prepped. She had to go through all the normal surgical procedure: making sure she hadn’t eaten anything after midnight, getting the surgical gown on, double and triple checking the procedure, etc… It was right about noon when she went back into the actual surgical area. The surgery took about an hour and a half, and when the surgeon came out to talk to me, he said that everything went really well. The stones that they broke up were harder than expected, but they were still able to break them up. They had to leave the stent in because there were a couple of fragments that were still up in the kidney, and that would be taken out in a couple of weeks. The greatest news was that they were able to take the intubation tube out right away, and Becky was sitting up and doing pretty well. When I was finally able to see her, she looked really good and felt pretty well. Her throat was a little sore from the intubation, but other than that, she felt pretty good. At that point, it was mainly the pain meds working, but you take what you can get. They kept her overnight for observation, but we were fine with that.
When we got home, Becky found out that the stent was more troublesome than she originally thought. She had pain every time that she moved and it was also making her incredibly nauseous. The surgery was on Tuesday, she got released Wednesday afternoon, and by Thursday night Becky had to go back into to ER because she was throwing up so much, and her urologist told her that if she couldn’t keep anything down that she needed to go to ER to get some fluids. When we got there, they put her on a large amount of fluids and a good cocktail of pain meds and anti-nausea drugs so that she was able to get some sleep. The next morning, she was doing much better. She still needed the really strong pain meds to get through, but when she was on the pain meds, she felt pretty good. Over the next couple of days, her doctor kept an eye on her and saw that she was improving. Her doctor was hesitant to release her because he was afraid that she would end up back in the ER. By Saturday, Becky was able to get by with lower amounts of pain meds so the doctor felt more comfortable releasing her. Becky still had trouble eating the entire time the stent was in so, by the time that she got it out, she had lost over 10 pounds. For most women, that would be a feat of joy, but with the CF, Becky needs to keep her weight up. There have been studies done that show that people with CF who are able to keep their weight up live longer. About a week after getting the stent out, Becky was still not able to eat much of anything so she decided that she needed to go back to Iowa. So that’s where things are.