Hospital Day 7
9:00 am - Dr. Cagan and Dr. Tangel stopped by to check on Dianne. They plan to schedule a bone marrow and spinal tap tests for today. She seems better than yesterday, but they don't feel that she can go home in her current condition.
1:00 pm - Dianne was taken to do the spinal tap test.
Sun Feb 27, 2011
Hospital Day 6
10:00 am - Dianne has nausea and wouldn't be able to go home until it subsides. We are concerned that the doctors will send her home without understanding what caused the problems. They are good at making her feel better and letting her go home - only to have the root cause reappear and land her back in the hospital. It's tiring and we need to know the cause & solution.
7:00 pm - It hasn't been a good day for Dianne. She had a lot of bladder pain, received a bunch of pain killers, and has slept most of the day. Dr. Emilia Ripoll, a urologist from Boulder who specializes in Interstitial Cystitis suggested some non prescription medicines and exercises which could eventually help reduce the pain once she leaves the hospital. Unfortunately, none of these will provide the instant relief that is so dearly needed.
10:00 am - Dianne has nausea and wouldn't be able to go home until it subsides. We are concerned that the doctors will send her home without understanding what caused the problems. They are good at making her feel better and letting her go home - only to have the root cause reappear and land her back in the hospital. It's tiring and we need to know the cause & solution.
7:00 pm - It hasn't been a good day for Dianne. She had a lot of bladder pain, received a bunch of pain killers, and has slept most of the day. Dr. Emilia Ripoll, a urologist from Boulder who specializes in Interstitial Cystitis suggested some non prescription medicines and exercises which could eventually help reduce the pain once she leaves the hospital. Unfortunately, none of these will provide the instant relief that is so dearly needed.
Sat Feb 26, 2011
Hospital Day 5
8:00 am - Kari Schoenwald (Infectious Disease) was here at 7:00 am this morning. She feels that the treatment for the bacteria in Dianne's lungs is working and that she could soon go home. Both Kari & Dianne feel that the Pyridium has been the best treatment for the bladder pain. We're just waiting for the other doctors.
11:45 am - Dr. VanHook just left and said that Dianne may be able to go home tomorrow. We're unsure if Dr. Manion will stop by today so he may have different thoughts.
8:00 am - Kari Schoenwald (Infectious Disease) was here at 7:00 am this morning. She feels that the treatment for the bacteria in Dianne's lungs is working and that she could soon go home. Both Kari & Dianne feel that the Pyridium has been the best treatment for the bladder pain. We're just waiting for the other doctors.
11:45 am - Dr. VanHook just left and said that Dianne may be able to go home tomorrow. We're unsure if Dr. Manion will stop by today so he may have different thoughts.
Fri Feb 25, 2010
Hospital Day 4
5:00 pm - Rebecca & Jeff did not arrive in time to talk with the doctors so we're not aware of any new plans. Dianne is more alert but still has pain.
5:00 pm - Rebecca & Jeff did not arrive in time to talk with the doctors so we're not aware of any new plans. Dianne is more alert but still has pain.
Thu Feb 24, 2011
Hosptial Day 3
10:00 am - Only Dr Robert Fisher has been by to see Dianne so far this morning. He is Mike Johnson's partner for hematology, oncology and internal medicine. They are still planning to do a bone marrow test - probably next week. Dianne is still in a lot of pain - probably more than any other time. It's difficult to see her in this state.
6:30 pm - Kari Schoenwald (Infectious Disease) received the recommendation from National Jewish to use Ethambutol as the antibiotic for the type of Mycobacterium that was sampled from Dianne. Dr. Sean Manion (Urology) has pretty strong feelings that Dianne's bladder pain is not being caused by the antibiotics. He confirmed that there is no known cure or common treatment for Interstitial Cystitis. He encouraged us to get other options but Dianne has already been to the leading urologist in the area that Dr Manion recommended. Her pain as subsided late this afternoon and she seemed to have more interest in eating dinner than the previous meals.
Wed Feb 23, 2011
Hosptial Day 2
9:00 am - There is uncertainty for why Dianne has been hospitalized again, but they believe the mycobacterium is flaring. Her bladder has been really hurting and we're unsure if the two issues are related. There's no exact plan for today but hope that they can make Dianne's pain more tolerable.
7:30 pm - There hasn't been much done today. Dianne still has lots of pain. Dr. Mike Johnson, the hematologist talked about doing a bone marrow test - possibly on Friday.
9:00 am - There is uncertainty for why Dianne has been hospitalized again, but they believe the mycobacterium is flaring. Her bladder has been really hurting and we're unsure if the two issues are related. There's no exact plan for today but hope that they can make Dianne's pain more tolerable.
7:30 pm - There hasn't been much done today. Dianne still has lots of pain. Dr. Mike Johnson, the hematologist talked about doing a bone marrow test - possibly on Friday.
Tues Feb 22, 2011
Eighteen days ago, Dianne arrived home from a twelve day stay at Longmont United Hospital for Mycobacterium and Interstitial Cystitis combined with a Lupus flare. She has been real uncomfortable while at home. A sample of the Mycobacterium was sent to National Jewish in Denver where it is being analyzed to determine which antibiotics would best combat this bacteria. We should have the results this coming Thursday 2/24.
At 12:19 pm today, Dr. Brenda called to say that Dianne passed out in her waiting room before her chiropractic appointment. They called 911 and the paramedics took Dianne back to Longmont United Hospital. Rebecca, Eva, and I spent the remainder of the day in the ER until they moved Dianne to Room 3018.
-Jeff
Fri Feb 4, 2011
Hospital Day 12
8:00 am - Dr. Tangel has been in and just said that Dianne will be able to go home today but he is checking with Dr. Gill to make sure. The nurses have mentioned that they will wait until noon to see if Dr. Gill shows up, otherwise they will call her.
Dianne's pain has been worse the past day or so, which concerns us. It's more in her bladder than the all over pain she has been having. She was getting injections through her IV in her arm (even though she has not been receiving fluids through the IV) and this will not be available once she is home. Dr. Tangel did prescribe some pain meds to use at home.
7:00 pm - Dianne arrived home and is spending most of the time sleeping on the sofa. The prescription for the Mycobacterium won't be ready for another few weeks. We hope that this will resolve one of her health issues. We appreciate everyone's thoughts and prayers.
8:00 am - Dr. Tangel has been in and just said that Dianne will be able to go home today but he is checking with Dr. Gill to make sure. The nurses have mentioned that they will wait until noon to see if Dr. Gill shows up, otherwise they will call her.
Dianne's pain has been worse the past day or so, which concerns us. It's more in her bladder than the all over pain she has been having. She was getting injections through her IV in her arm (even though she has not been receiving fluids through the IV) and this will not be available once she is home. Dr. Tangel did prescribe some pain meds to use at home.
7:00 pm - Dianne arrived home and is spending most of the time sleeping on the sofa. The prescription for the Mycobacterium won't be ready for another few weeks. We hope that this will resolve one of her health issues. We appreciate everyone's thoughts and prayers.
Thurs Feb 3, 2011
Hospital Day 11
8:30am - Dr. Tangel informed Dianne that she was not going home today so this was disappointing.
Dr. Manion came to check on Dianne's bladder pain. They did talk about the different medications that she has tried and mentioned starting a couple old medications that Dianne has taken in the past and didn't work, and also gave her horrible side effects. They didn't really come up with a new plan for the pain other than tylenol or ibuprofen, but he does want to see her again in a few weeks once she is out of the hospital.
Dr. Cagan informed us that Dianne will probably get to go home tomorrow. He says that Dr. Gill is still working to find the appropriate antibiotic for the lung infection. He mentioned that she has been on her oral antibiotics for a few days now and that should cover her until they can get the new antibiotic. He did give her a new prescription for her bladder, something that will dissolve under the tongue and she can take it as needed. She had mentioned how it has become a disruption in life, having to plan out where bathrooms are when running errands or on trips. This medication that he added should help her manage the urgency and some of the pain with associated with the bladder. She won't start using this until she is out of the hospital.
10:30am - Dr. Gill popped in and went over her bladder meds, as well as checking in with everything else. She says that Dianne has been on the oral antibiotic since Tuesday so she says that she will have been on that for 48 today. We did get some clarification on the antibiotic situation. The current medication was for the staph infection that Dianne had last week. So as of now, she is currently not being treated for the new mycobacterium infection that they found. They have the St. Jude hospital lab working on growing the fungus and finding the correct antibiotics to eliminate it. Dr. Gill explained that they like to find 2 different types of antibiotics that will kill different strands of the fungus. This particular growth likes to mutate and that is how it is able to continue to linger in most patients. So if they are able to find a couple strands of antibiotics to address multiple mutations they hope to be able to kill it off entirely. Gill did confirm that as of now, she is not being treated for the fungus and won't until they formulate the correct antibiotic. This could be within the next 2 weeks. Dr. Gill did say that she could stop the antibiotics for the staph infection today. They are wanting to keep her in a bit longer to make sure that she doesn't go home and crash within a few hours, like she has done in the past.
So hopefully tomorrow she will be out! And within the next week she should be able to start the antibiotics to get rid of this infection for good.
8:30am - Dr. Tangel informed Dianne that she was not going home today so this was disappointing.
Dr. Manion came to check on Dianne's bladder pain. They did talk about the different medications that she has tried and mentioned starting a couple old medications that Dianne has taken in the past and didn't work, and also gave her horrible side effects. They didn't really come up with a new plan for the pain other than tylenol or ibuprofen, but he does want to see her again in a few weeks once she is out of the hospital.
Dr. Cagan informed us that Dianne will probably get to go home tomorrow. He says that Dr. Gill is still working to find the appropriate antibiotic for the lung infection. He mentioned that she has been on her oral antibiotics for a few days now and that should cover her until they can get the new antibiotic. He did give her a new prescription for her bladder, something that will dissolve under the tongue and she can take it as needed. She had mentioned how it has become a disruption in life, having to plan out where bathrooms are when running errands or on trips. This medication that he added should help her manage the urgency and some of the pain with associated with the bladder. She won't start using this until she is out of the hospital.
10:30am - Dr. Gill popped in and went over her bladder meds, as well as checking in with everything else. She says that Dianne has been on the oral antibiotic since Tuesday so she says that she will have been on that for 48 today. We did get some clarification on the antibiotic situation. The current medication was for the staph infection that Dianne had last week. So as of now, she is currently not being treated for the new mycobacterium infection that they found. They have the St. Jude hospital lab working on growing the fungus and finding the correct antibiotics to eliminate it. Dr. Gill explained that they like to find 2 different types of antibiotics that will kill different strands of the fungus. This particular growth likes to mutate and that is how it is able to continue to linger in most patients. So if they are able to find a couple strands of antibiotics to address multiple mutations they hope to be able to kill it off entirely. Gill did confirm that as of now, she is not being treated for the fungus and won't until they formulate the correct antibiotic. This could be within the next 2 weeks. Dr. Gill did say that she could stop the antibiotics for the staph infection today. They are wanting to keep her in a bit longer to make sure that she doesn't go home and crash within a few hours, like she has done in the past.
So hopefully tomorrow she will be out! And within the next week she should be able to start the antibiotics to get rid of this infection for good.
Wed Feb 2, 2011
Hospital Day 10
11:30am - Rebecca arrived with lunch from Chipotle! Dianne was very excited to eat something other than the hospital food. She also brought some paperwork for Dianne to do so that will help her feel like things aren't piling up at home.
Dr. Gill's PA came in as well as Dr. Vanhook (Dr. Tangel's associate). They both read over the charts and made sure that nothing has changed. They informed Dianne that Dr. Gill still wasn't done with the antibiotic for the mycobacterium but it should be done by tomorrow. They are making this in pill form so that she can continue to take it once she is home.
Dr. Tran came in, she had mentioned doing a spinal tap on Dianne the other day when they did the MRI, but was worried that the steriods that Dianne was on would interfere with the results of that. It would help to narrow down if lupus is causing any of the side effects or problems that she has been having. Dr. Tran said she wanted to take Dianne off the IV steriods she was on and switch her to pill prednisone. She started that at lunch. And then she wants to wait until Dianne is done with the antibiotics for the lung infection to figure out if they should move forward with the spinal tap.
As of now, Dianne is no longer on IV fluids, she is eating and drinking normally and is taking all medications orally. We are just waiting until the antibiotic for the lungs is done and once she starts that she will most likely be at the hospital another 48 hours, then sent home. They want to make sure she doesn't have any allergic reactions to anything before they send her home.
11:30am - Rebecca arrived with lunch from Chipotle! Dianne was very excited to eat something other than the hospital food. She also brought some paperwork for Dianne to do so that will help her feel like things aren't piling up at home.
Dr. Gill's PA came in as well as Dr. Vanhook (Dr. Tangel's associate). They both read over the charts and made sure that nothing has changed. They informed Dianne that Dr. Gill still wasn't done with the antibiotic for the mycobacterium but it should be done by tomorrow. They are making this in pill form so that she can continue to take it once she is home.
Dr. Tran came in, she had mentioned doing a spinal tap on Dianne the other day when they did the MRI, but was worried that the steriods that Dianne was on would interfere with the results of that. It would help to narrow down if lupus is causing any of the side effects or problems that she has been having. Dr. Tran said she wanted to take Dianne off the IV steriods she was on and switch her to pill prednisone. She started that at lunch. And then she wants to wait until Dianne is done with the antibiotics for the lung infection to figure out if they should move forward with the spinal tap.
As of now, Dianne is no longer on IV fluids, she is eating and drinking normally and is taking all medications orally. We are just waiting until the antibiotic for the lungs is done and once she starts that she will most likely be at the hospital another 48 hours, then sent home. They want to make sure she doesn't have any allergic reactions to anything before they send her home.
Tues Feb 1, 2011
Hospital Day 9
11:00 am - Rebecca and Breckin arrived and Dianne had already showered. She had a better night of sleeping and had some breakfast. Dr. Tangel has been in this morning. He just checked to make sure nothing has changed and did another X-Ray to verify that as well. Dr. Tang came in to talk about the MRI that was done yesterday. The MRI showed nothing that would be of concern. Dr. Tang is going to have Dianne finish up the IV of prednisone that she is currently on and then they are going to switch her to pills. She is going to up the dosage that Dianne was on before she went into the hospital and then eventually ween her down after she is more stable. Dr. Cagan stopped by as well, and he just checked to make sure nothing was changing and that Dianne was feeling better. She did mention to him that she was worried about all the paperwork at home stacking up, so Dr. Cagan said that it was fine to bring all of that in so she can handle it while she is here. He said if this will help her feel at ease then it's fine.
Dr. Gill has not been in yet but she has talked to the other doctors and passed messages along. She is currently working on specializing her antibiotics for the mycobacterium. She is able to customize the antibiotic to make sure it's destroying the actual fluids/fungus that were taken from Dianne's lungs when they did the Bronchoscopy last Thursday. So this has taken her a bit longer to complete but she should have it done today or tomorrow. Then Dianne will be able to start taking the antibiotics.
Rebecca did notice that Dianne's fingers seemed a bit more red than usual. The doctors have mentioned that they are a little more cold than normal so she could wear light gloves to help with that if we bring them in. She also noticed that Dianne's lips seemed a bit blue. We are trying to note more of Dianne's physical conditions to see if that helps to determine any warning signs of when infection is coming, or present. Some of these same things have been noticed before Dianne will spike a fever and start to ramble words, so we're hoping some of this can be tied together.
11:00 am - Rebecca and Breckin arrived and Dianne had already showered. She had a better night of sleeping and had some breakfast. Dr. Tangel has been in this morning. He just checked to make sure nothing has changed and did another X-Ray to verify that as well. Dr. Tang came in to talk about the MRI that was done yesterday. The MRI showed nothing that would be of concern. Dr. Tang is going to have Dianne finish up the IV of prednisone that she is currently on and then they are going to switch her to pills. She is going to up the dosage that Dianne was on before she went into the hospital and then eventually ween her down after she is more stable. Dr. Cagan stopped by as well, and he just checked to make sure nothing was changing and that Dianne was feeling better. She did mention to him that she was worried about all the paperwork at home stacking up, so Dr. Cagan said that it was fine to bring all of that in so she can handle it while she is here. He said if this will help her feel at ease then it's fine.
Dr. Gill has not been in yet but she has talked to the other doctors and passed messages along. She is currently working on specializing her antibiotics for the mycobacterium. She is able to customize the antibiotic to make sure it's destroying the actual fluids/fungus that were taken from Dianne's lungs when they did the Bronchoscopy last Thursday. So this has taken her a bit longer to complete but she should have it done today or tomorrow. Then Dianne will be able to start taking the antibiotics.
Rebecca did notice that Dianne's fingers seemed a bit more red than usual. The doctors have mentioned that they are a little more cold than normal so she could wear light gloves to help with that if we bring them in. She also noticed that Dianne's lips seemed a bit blue. We are trying to note more of Dianne's physical conditions to see if that helps to determine any warning signs of when infection is coming, or present. Some of these same things have been noticed before Dianne will spike a fever and start to ramble words, so we're hoping some of this can be tied together.
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