DJ'S JOURNAL

FINDING A NEW NORMAL - PART 2

Continuing on with our “medical odyssey”......

*Wednesday, October 27: About the time I was going to get up this AM, Ron was getting the second blanket out of the closet. I asked him what was wrong, and he said that he’s cold, but he had been perspiring earlier. I questioned whether the infection is back, and his reply was that he didn’t think that it went away entirely. I hope that he can get through today and go to Clinic tomorrow, rather than going to the ER. We’ll see!!!

*Thursday, October 28: Because Ron’s med time has been moved up an hour, he needed to be at Clinic even earlier, so we left at 6A, instead of 630A, for the train station. That half hour made a world of difference with the traffic....much less at 6A!!! I returned to the trailer, where I took the dog out and completed my normal walk before I got ready to go to the hospital. I actually got ready in just under an hour, and I was eating breakfast in the cafeteria at 930A. My timing was good because when I went down to the Transplant Center, we were called in for the conference with the Coordinator. Ron told her about all his complaints…the fever, the vision problem, the headache, the lack of antibiotics. As always, after seeing her, we went back to the waiting room to be called in again for the doctor. Hurry up and wait!!!! This time, the doctor asked all the questions. The results were a 24-hour urine test; a drop in the Norvasc, Prednisone, and Lasix; an RX for Amoxicillin; “donation” for a urine culture and one from the drainage bag; and he goes back on Monday. No one is exactly sure why Ron is having the blurred vision. They even did some x-rays of his sinuses!!!

*Sunday, October 31: Ron didn’t have a “hot flash” overnight, but by late morning, he was feeling just as bad as he had been all week long. Right after finishing breakfast, he crashed in his chair for at least an hour. He complained of a roaring headache again, too. For most of the day, he barely moved from the chair, except to go to the bathroom or get a brief snack.

*Monday, November 1: Through a torrential downpour, I took Ron to the train station, with the intention of joining him at the hospital later. But, with the weather getting worse, I decided against going and finally got a message to Ron in the Transplant Center. Shortly thereafter, he called and asked me to pick him up at the train station. Seems that he saw the doctor, and he would be admitted to the hospital as soon as a bed is available on the 9th floor. This time, the drive to the station wasn’t too bad as there was a bit of a break in the rain. On the way back, Ron explained that his specific infection had been identified (exact name unknown at this point), and it was found not only in his urine specimen, but in the drainage also, something that they were a little concerned about. The Amoxicillin that the doctor prescribed doesn’t touch this particular infection….why he prescribed it in the first place, without finding out what the infection was, is unknown!!! Only IV antibiotics will get rid of it!!! In fact, Ron’s case is being turned over to the Infectious Disease Department. Before leaving the hospital, Ron was very adamant with the doctor about getting rid of this stuff....NOW!!!!

Later, Ron’s Coordinator called to tell him there still wasn’t a bed available, but that he should go back to the hospital to wait. Just after I returned home from taking him to the hospital, he called to say that he was in the process of being admitted. Sometime around 5P, he called again to let me know what room he was in, and later he called back again after a doctor had been there. He gave me the name of the infection and the antibiotic, which I looked up in our medical books. He has Pseudomonas, and they are filling him with Cefepime. Pseudomonas is a bacterial infection that is a common cause of urinary tract infections, and the most serious infections “occur in debilitated people whose immune system is impaired by medications, other treatments, or disease.” (I took that from the Merck book.) As for the antibiotic, that particular one is not listed in our older Pill Book, but there are similar names listed, so it must be fairly new. It is similar to Penicillin.

*Wednesday, November 3: Before getting ready to go to the hospital, I called Ron for an update. A transplant doctor had already been in asking if the Urologist from Infectious Diseases had been in. When Ron said no, he said that he would make sure that he comes today. OK....so I got ready and was on my way to the hospital. An hour had passed, and I was about ready to head home when in walked the “long awaited” Urologist, along with a colleague. He reviewed Ron’s case, recalling what he read in Ron’s chart and asking questions. He said that the stent or the lengthy use of the catheter most likely caused the infection, but it is very common in transplant situations. Bottomline, he recommended 2 weeks of IV antibiotics, to which I said something about “not in the hospital I hope”. He said no....at home. YES!!! He also recommended that the stent come out. We were both very happy with all that he said. When I asked him why Ron was released without follow-up procedures or antibiotics, he couldn’t really answer except to say that they “goofed”.

*Thursday, November 4: I called Ron before my walk, and I called again afterwards. Nothing new yet, so I didn’t know whether to go in there or not. Later, Ron called to say that the stent would be taken out tomorrow morning at 8A…..finally some progress. He asked me to come in to see him, bring a change of clothes, and stop by the cafeteria for some ice cream. After I arrived in his room, he wanted me to go down to the Transplant Center to find his Coordinator to let her know what was going on. Before I saw her, the Social Worker came out, and I cornered her. I told her what had happened through this whole situation…….early release, no antibiotics, back to the hospital, etc. I don’t know if they’ll do anything about all this; we just want it known that everything was totally mishandled by the Transplant Department.

*Friday, November 5: Knowing that Ron was going to the Urology Clinic to get the stent out at 8A, I spent the morning waiting for him to call when it was all over. Meantime, someone from the hospital’s home health care office called me because she couldn’t reach Ron. She verified all the info that she had and which address was the delivery address. She would then take some paperwork to Ron when he returns to his room. By noon, I still hadn’t heard from Ron, and I really was starting to get worried. I don’t remember exactly when he finally called, probably after 1P, but he certainly wasn’t happy about the way everything had been handled....nurses’ errors, late pickup, waiting because of the late pickup....this whole situation is getting way out of hand!!!! I told him about the earlier call and the paperwork, so he had to track that down, as well as getting someone to release him and someone else to get the transportation wheelchair. He must have made at least 10 phone calls to me until I finally left to pick him up at 3P. Of course, there was more traffic so the trip to the hospital took 40 minutes, rather than 25 minutes. On the return trip, everything was even worse, mostly because of the out-of-synch signals caused by the trains. Abominable!!!! We finally got back to the trailer at 415P.

*Saturday, November 6: Our day was filled with everything to do with Ron’s Home Health Care. By 8A, since we had not heard anything about it, Ron called their office. He got the name of the nurse, and she called us a few minutes later. She didn’t even have his name yet!!! That came just as I was giving her directions to the park. Because we hadn’t received it, I questioned her about the medication delivery. She told us to call the office and ask for the Pharmacist. Someone called back, saying that they had tried to deliver on Friday night, but couldn’t get ahold of us, which at first sounded strange to us. I realized later that I forgot to plug the phone back in after disconnecting my computer. Duh!!!!

Anyway, the medication was delivered finally just before 11A, and the nurse arrived shortly after that. Good timing!!! After she inserted a new IV in Ron’s left arm, she went about acquainting us with the procedures of administering the antibiotics. That done, she filled out paperwork and took a medical history plus checked Ron’s BP and temperature. We were now on our own, but when it came time to administer, the line clogged, and the drug wouldn’t go in. We had to call the nurse. Luckily, she lives only a short distance away, so she came over and put in a new IV in Ron’s right arm. Now, everything’s working fine. By the time we got to bed, it must have been 10P, much later than normal. But then again, what is “normal”....we’re still trying to find that “new normal”.

*Monday, November 8: Monday is Clinic day, but this day turned out much longer than either of us had experienced to date. I took Ron to the train, returned to take the dog out, go for my walk, and get ready to go back to the hospital. After a quick breakfast in the cafeteria, I went down to the Transplant Center. We waited for a while before being called back for the Coordinator’s interview about Ron’s condition, followed by an interview with a resident. Ron is complaining of fluid retention in his feet and lower abdomen plus being tired all the time. Expecting the lead doctor of the transplant team, we found ourselves waiting and waiting....getting very impatient.

Finally, they said that the regular doctor had emergency surgery so another doctor was coming down. It was probably noon by that time. This was the doctor that prescribed the Amoxicillin when he didn’t even know what the infection was. Anyway, he starts going over everything and then starts changing everything right and left....half the dose of Cipro, changing the Neoral and Rapamune, ordering an ultrasound (again), and ordering a transfusion. We both questioned him about what had happened over the past 2 weeks and why. Frankly, I wasn’t too happy with some of his answers. He seemed to be backpedaling, making excuses. I questioned the necessity of a transfusion, especially since Ron’s not had one before. I truly don’t like the idea.

After finishing up with the doctor, we went to lunch in the cafeteria and then returned to the waiting room while the Coordinator tried to schedule the ultrasound and the transfusion. After an hour of waiting, we questioned what was going on, but when they said that Ron should go up to Radiology and wait to be fitted into the schedule, I said "That’s it....I’m going home!!!”

After an hour and a half, and not hearing anything from Ron, I called the Transplant Center to track him down. Turns out that he had the ultrasound and was waiting to be admitted for the transfusion. When he checked as to how long that procedure would last, they said that it could take 4 hours. That’s when he said “No” and called me to pick him up. Why the Coordinator or the doctor didn’t tell him all the particulars, I haven’t a clue. Why does it seem that so many things are not explained or they get changed??? That doctor changed most of Ron’s meds without giving much of an explanation. I think he just wants to change things that other doctors have prescribed or recommended.

*Tuesday, November 9: Today was yet another day of confusion and medical questions, some of which were answered and others are still pending!!! First, I called our insurance Case Manager and left a message. She called back, and I brought her up-to-date on Ron. I also asked her about the necessity of a transfusion. She assured me that it was a normal procedure under the circumstances.

Meanwhile, Ron went about getting ready to go to the hospital to “wait” for that transfusion. Before he finished, the Coordinator called, returning the voice mail that I left the previous afternoon. She was a bit critical of Ron for coming home instead of waiting for the transfusion…..to which I explained why....and got on her case for not explaining how long the whole thing would take. She seemed a bit miffed, but too bad. To that, she said that she would call when a bed was available for the procedure. Around 1015A, the call came, and I took him to the hospital. Ron called me about 1230P to tell me that they hadn’t even started the transfusion yet, just started “preparing” the blood, whatever that means. The actual transfusion of a unit of blood takes about 2 hours, and he needed 2 units. That’s 4 hours, but all the prep work before and after take another 4 hours, something else that no one told us. He was at the hospital from 1030A to 630P!!!! (He did get lunch and dinner plus the use of a telephone and TV, however!!!) We are certainly glad that he didn’t stay on Monday!!! He wouldn’t have been done until 3 or 4 in the morning!!!

*Thursday, November 11: Clinic day for Ron so I took him to the train station just after 6A and came back for the day....didn’t go there myself……not this time. Ron called at 145P to pick him up, and he certainly had a bunch of good news. First of all, they took that drainage bag out; he was SO happy to be rid of that. All his blood numbers had improved. No sign of infection in the urine culture. YIPPEE!!!! More good news....he doesn’t have to come back to Clinic, i.e. see a doctor, for 4 weeks, on Dec. 9, but he does go in to Lab for a blood draw on Nov. 23. So, needless to say, our conversation turned to whether we should move up to Conroe instead of staying here.

After arriving back at the trailer, the Home Health Care nurse called almost as we walked in the door, and she arrived shortly after to change Ron’s IV. Not a problem, but when Ron tried to clear the line later for his evening dose, he ran into problems. I called the nurse, and again, she came out and put another IV in. Seems that Ron’s left arm just doesn’t like to have an IV in it!!!! After all the trouble that he’s had with IVs, he doesn’t want it changed again....just finish the meds!!!

*Monday, November 15: Over the weekend, we made preparations to move the rig back up to the Conroe area, but before we could go, Ron had to go to the hospital for an Epogen shot, to help his Hemoglobin. After he was gone for 3 ½ hours, he called to tell me that his Coordinator wants the doctor to see him. Turns out that he gained weight from water retention, one of those serious signs of something wrong that we’ve been warned about. After seeing the doctor and getting a Lasix RX, he called again to say that they were now waiting for some test results. Ron returned around 2P....seven hours after he left....and just when the rain came!!!! He wasn’t too happy about the unexpected long day. Since this edema problem had gotten worse, I suggested that we just stay here, to which he reluctantly said yes. Now, hopefully, the edema will be under control before we plan on heading down to Rockport for the holidays.

*Wednesday, November 17: The swelling in Ron’s feet and ankles is still there, with not much improvement. He’s really wondering if the higher dosage of Lasix is actually working. As for good news, he finished the last dose of the antibiotic last night, and he gave me the honor of pulling out his IV. Thankfully that is overwith....not to ever return!!! Finding that “new normal” is turning out to be harder than we thought it would be…..that’s for sure!!!!

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With this second hospital episode behind us, we are trying to make plans for the holidays, when hopefully, we can have a reprieve from the hospital visits. More to come....