Shingles won the second skirmish. Denise and I went to the RPA for her usual checkup, last Monday. All the blood results were good. We talked to her haematologist and then went across the road for an appointment with with the lung guy Stephen, who is monitoring the carcinoids on her lungs. The news there was also good but... By the time for the appointment with Stephen came around Denise felt like shite. She was in intense pain, very tired, vomiting and had diarrhoea. The clinic nurse checked her out before the appointment and after Stephen saw her he recommended that she be admitted, at least for that night, so that her pain could be treated along with the dehydration brought on by the fluid loss to vomiting and the other thing. Denise reluctantly agreed to this course of action and she was admitted to Lifehouse ward 9 South. The registrar who examined D prior to admission said she had never seen shingles like it.
Once on the ward, Denise was given lyrica and a bag of electrolytes was put up. The lyrica didn't do the job so she was given endone and when that kicked in the pain was punted, for the night at least. Come the morning and it had returned. Since then Denise has been reluctantly sequestered in Lifehouse while they try to create a regimen of pain medication that will keep the pain at bay and allow her to be discharged. She remains a reluctant patient but agrees that Lifehouse is the best place for her at this point. There are a couple of other things that need to be treated and if she wants you to know the details she will tell you about them after she runs wild and free.
I am in Cairns today and will be here until Monday. I talk to Noosa several times each day. She is in good spirits and for the most part, pain free. I will keep y'all posted on her progress.
Friday, 4 August 2017
Friday, 21 July 2017
July 2017 Shingles
It is not unusual for shingles to come blundering in when myeloma patients have a stem cell transplant. In fact, it would probably be easier to count the number of myeloma patients who have not had shingles than to count those who have. Shingles is a one-word description for "agonising shite". I've never had them but those who have been through it, tell me that the pain is something that they would not wish on even their worst enemy.
Denise is going through the shingles experience...again. The pain is debilitating and from what I can tell, barely bearable. At this point she is through the worst of the pain, thanks to Lyrica, some pretty heavy-duty dope. The lyrica side effects, which incidentally, we saw last night and this morning, remind me of some weirdness I experienced back in the early 70s.
D as expected, is on a downer. That said, she is sleeping easily today and her condition is improving slowly. I have seen enough of this bloody thing called shingles to never want to experience them first- hand.
Denise is going through the shingles experience...again. The pain is debilitating and from what I can tell, barely bearable. At this point she is through the worst of the pain, thanks to Lyrica, some pretty heavy-duty dope. The lyrica side effects, which incidentally, we saw last night and this morning, remind me of some weirdness I experienced back in the early 70s.
D as expected, is on a downer. That said, she is sleeping easily today and her condition is improving slowly. I have seen enough of this bloody thing called shingles to never want to experience them first- hand.
Sunday, 9 April 2017
Transplant Update
All good news here. At almost 12 monts post transplant everything is looking great. There is no evidence of myeloma bad guys in D's blood and the infection that put her back into the RPA is a memory. I suspect that the infection, whatever it was, is still there but is being held at bay by the bactrim. It's not my miniscule knowledge of bacterial infections that leads me to this conclusion but the fact that the infection reappeared in November last year when Denise came off the bactrim and got progressively worse.
Anyway, as they say in the classics "Onward and upward". Denise is in very good health mentally and physically and is going to Cairns with me next week for 5 days. That should be a hoot!
Anyway, as they say in the classics "Onward and upward". Denise is in very good health mentally and physically and is going to Cairns with me next week for 5 days. That should be a hoot!
Thursday, 26 January 2017
January 27th 2017
Denise is breaking out of the RPA today and will be running wild and free back to Carlingford with the Lesos. Her BP is above 100 and holding so all is well. The down side is that the infection was never isolated. She has laid down her edict on visitors again because she is not up to playing nice with anyone after she gets home. This means you! Denise will take calls at home and she will let you know when she is ready to be sociable again. Break this edict and you will have me to contend with, and you know what that means - You Have Been Warned
Tuesday, 24 January 2017
January 24th 2017
A picture is worth a thousand words....
But Denise's edict stands: No visitors please.
But Denise's edict stands: No visitors please.
Sunday, 22 January 2017
January 23rd 2017
I was a bit slack last night and didn't get an update in. Sorry Lorraine 😧. All is well. The tests on Denise's spinal fluid did not reveal any problems so meningitis and other disorders of that type have been ruled out. Denise was all set to be moved out of ICU and on to a ward yesterday when her BP started to misbehave again so she is still in The Dungeon. She is in good spirits and plans to escape from ICU today. Most of the IV lines that were in place have been removed. The fluid and BP monitoring lines are still in place.
Monday Arvo.
I just spoke to Denise. She has slipped The Dungeon's chains and is out of ICU. But, and this is a big BUT, no visitors please. She is not up to visits from anyone but family at the moment. Please, no flowers either. She is back on 7 West 1 and that ward is flower-free because flowers carry spores.
Monday Arvo.
I just spoke to Denise. She has slipped The Dungeon's chains and is out of ICU. But, and this is a big BUT, no visitors please. She is not up to visits from anyone but family at the moment. Please, no flowers either. She is back on 7 West 1 and that ward is flower-free because flowers carry spores.
Saturday, 21 January 2017
January 21st. 2017
Today was spinal tap day. No, not this spinal tap - this spinal tap. Why? Well the source of the infection and the type of infection have not been nailed down yet so they're going to mine the spine and see what they can discover. To my mind, this is turning into a replay of the events that occurred during the transplant aftermath, viz: unknown infection followed by ICU followed by infection went away.
I spoke to Blake this afternoon and the lumbar puncture had been performed. Denise was feeling OK but, as expected, she was totally over being in hospital, particularly the bit that entails being down in The Dungeon. She is a bit teary, a bit depressed and a whole lot pissed off but nothing as grim as what she was during her last stay in ICU.
I will talk to her again tomorrow and update this later that day. All is well.
I spoke to Blake this afternoon and the lumbar puncture had been performed. Denise was feeling OK but, as expected, she was totally over being in hospital, particularly the bit that entails being down in The Dungeon. She is a bit teary, a bit depressed and a whole lot pissed off but nothing as grim as what she was during her last stay in ICU.
I will talk to her again tomorrow and update this later that day. All is well.
Friday, 20 January 2017
January 20th - Again
Denise was having a line put into her leg when I called this evening. This is to monitor her BP at 10 minute intervals. There has been no progress on nailing down the infection. All of her organs have been checked and ultrasounds have been run against them. Kidneys, heart, liver et al are all working to plan. The good news is that because Denise's renal functions are good there is no need to recall her old mate, Marvin. That's Mr Dialysis for those of you not in the know. The medical consensus (a better one than the bloody global warming consensus) is that the BP fluctuations are being caused by the infection, whatever it is.
Our girl is not doing handstands or brimming with optimism at the moment but she is positive about the whole thing and seeing it as just something else that she has to do. She is confident that they will isolate the infection. The outcome could be that it is the same infection that she had during the transplant and she will have to stay on antibiotics to keep it locked down. Thinking back, it seems to me that the whole coughing thing began after she was taken off the bactrim.
Onward and upward as they say in the classics - more tomorrow.
Our girl is not doing handstands or brimming with optimism at the moment but she is positive about the whole thing and seeing it as just something else that she has to do. She is confident that they will isolate the infection. The outcome could be that it is the same infection that she had during the transplant and she will have to stay on antibiotics to keep it locked down. Thinking back, it seems to me that the whole coughing thing began after she was taken off the bactrim.
Onward and upward as they say in the classics - more tomorrow.
Thursday, 19 January 2017
January 20th 2017
Lady Squint is feeling a lot better. The type and source of the infection have not been tracked down yet and there will be more tests today. Denise is tired but alert and talkative. Well, not as talkative as she usually is (you know, underwater with a mouthful of marbles doesn't usually slow her down unless she is in the Nadiaistas gaggle) but still talkative.👹 Her temperature is stable and her BP is improving each hour. The only thing bothering her is a headache that comes and goes. The nursing staff hit her with a drug (oxycontin she thinks) which fixes her head and gives her a bit of a buzz. She is not complaining.
As usual, I received a list of instructions on what to do about Mum, the garden (she forgot that I'm in Cairns) and the hounds. There is no word on when she will be moved to a ward. I guess that won't happen until the infection is isolated and under control.
Blake will be seeing Denise later today along with Kate. I will be talking to her again this evening and will post another update after that.
As usual, I received a list of instructions on what to do about Mum, the garden (she forgot that I'm in Cairns) and the hounds. There is no word on when she will be moved to a ward. I guess that won't happen until the infection is isolated and under control.
Blake will be seeing Denise later today along with Kate. I will be talking to her again this evening and will post another update after that.
Return to the RPA
Denise has had an intermittent cough for a few months now. It comes and goes in bouts. She took it to Romina a couple of weeks ago who diagnosed an upper respiratory tract infection. Romina put Denise on antibiotics. Oops, she turned out to be allergic to Rulide so she was put back on the roids (Oh Joy! Oh Joy! - prayers were said for my safety).
On Tuesday Jan 17th Denise made one of her regular treks to the RPA to see her oncologist. As usual, Denise being Denise, she refused my offer to drive her and took public transport. She sang her old song "It Only Costs Me $2.50 With My Opal Card So I Am Using Public Transport". All went well at the clinic - no paraproteins so no myeloma. She had a CT scan to check the carcinoids on her lungs and jumped on a bus back to Central. The Newcastle Flyer got her to Epping and she climbed on the M54 to Carlingford. That's when it all turned to shite. By the time she walked up to number 10 from the bus stop she had a raging fever, felt like the proverbial and began throwing up. I was blissfully unaware of these events but luckily Kate was at home.
I walked into the Vestibule of Hell at 6:30 - "Lasciate ogne speranza, voi ch'intrate" - Google is your friend. Denise was throwing up fluid, had a temperature of 38.9 and was a tad pissed off with the world. I took her blood pressure and got 3 readings of high 50's over high 38's. I called 000 and was put through to an ambulance triage nurse. We went through all of the questions on her check-list and I told her about the BP problems. The nurse said she didn't think there was a need to transport D and told me to take her to Romina on Wednesday. With the benefit of 20-20 hindsight I see that I should have insisted that ambos be dispatched to make an assessment of Denise at home.
Come Wednesday morning she seemed to have improved, not dramatically, but improved. I got her in to see Romina at 11:30 and by that time she had started to go downhill again. Romina took one look at her BP and said "I know you don't want to do this Denise, but you're going to the RPA.". She gave us a letter and off we went - back to where it all began.
Denise was assessed and then treated in the emergency unit. They put up a couple of bags of fluid, took some x-rays, took blood for testing, put up a general purpose antibiotic and worked their usual magic. As I've said before, if anyone ever slags off at the RPA staff to me I will drop em where they stand. The nursing staff are wonderful. Anyway, around 16:00 Denise was moved down to ICU, aka: The Dungeon. One of the ICU doctors had already talked to us in the emergency unit so both of us knew the score. Once Denise got settled in she started to go febrile, not convulsing but shaking all over and very anxious. The doctor in charge got the the drips removed - antibiotics and noradrenaline - and hit the phone to one of his associates to talk about possible complications with the drugs and carcinoids. The outcome was that all of the drugs they were using were replaced and Denise became stable within 30 minutes. All was well and still is.
When I left at 21:30 she was getting back to her stroppy self and laughing and joking with me and her nurses. The chest x-rays taken in EU were compared with those the RPA had on file from last year and no changes in the carcinoids were evident. The next step is to isolate the infection and introduce a specific antibiotic rather than perform a general purpose treatment. Once Denise is stable and the infection has been identified she will be moved to a ward.
As always, she doesn't want any visitors until she says so. I have been told that I will be singing soprano if I allow anyone to visit her while she is in the ICU. I am in Cairns and Blake, Kate and Tahira will be visiting her regularly. To paraphrase the great Jeff Fenech again, she loves yez all but she ain't ready to see any of yez yet. By all means call her on her mobile. I will update this again later tonight or tomorrow.
On Tuesday Jan 17th Denise made one of her regular treks to the RPA to see her oncologist. As usual, Denise being Denise, she refused my offer to drive her and took public transport. She sang her old song "It Only Costs Me $2.50 With My Opal Card So I Am Using Public Transport". All went well at the clinic - no paraproteins so no myeloma. She had a CT scan to check the carcinoids on her lungs and jumped on a bus back to Central. The Newcastle Flyer got her to Epping and she climbed on the M54 to Carlingford. That's when it all turned to shite. By the time she walked up to number 10 from the bus stop she had a raging fever, felt like the proverbial and began throwing up. I was blissfully unaware of these events but luckily Kate was at home.
I walked into the Vestibule of Hell at 6:30 - "Lasciate ogne speranza, voi ch'intrate" - Google is your friend. Denise was throwing up fluid, had a temperature of 38.9 and was a tad pissed off with the world. I took her blood pressure and got 3 readings of high 50's over high 38's. I called 000 and was put through to an ambulance triage nurse. We went through all of the questions on her check-list and I told her about the BP problems. The nurse said she didn't think there was a need to transport D and told me to take her to Romina on Wednesday. With the benefit of 20-20 hindsight I see that I should have insisted that ambos be dispatched to make an assessment of Denise at home.
Come Wednesday morning she seemed to have improved, not dramatically, but improved. I got her in to see Romina at 11:30 and by that time she had started to go downhill again. Romina took one look at her BP and said "I know you don't want to do this Denise, but you're going to the RPA.". She gave us a letter and off we went - back to where it all began.
Denise was assessed and then treated in the emergency unit. They put up a couple of bags of fluid, took some x-rays, took blood for testing, put up a general purpose antibiotic and worked their usual magic. As I've said before, if anyone ever slags off at the RPA staff to me I will drop em where they stand. The nursing staff are wonderful. Anyway, around 16:00 Denise was moved down to ICU, aka: The Dungeon. One of the ICU doctors had already talked to us in the emergency unit so both of us knew the score. Once Denise got settled in she started to go febrile, not convulsing but shaking all over and very anxious. The doctor in charge got the the drips removed - antibiotics and noradrenaline - and hit the phone to one of his associates to talk about possible complications with the drugs and carcinoids. The outcome was that all of the drugs they were using were replaced and Denise became stable within 30 minutes. All was well and still is.
When I left at 21:30 she was getting back to her stroppy self and laughing and joking with me and her nurses. The chest x-rays taken in EU were compared with those the RPA had on file from last year and no changes in the carcinoids were evident. The next step is to isolate the infection and introduce a specific antibiotic rather than perform a general purpose treatment. Once Denise is stable and the infection has been identified she will be moved to a ward.
As always, she doesn't want any visitors until she says so. I have been told that I will be singing soprano if I allow anyone to visit her while she is in the ICU. I am in Cairns and Blake, Kate and Tahira will be visiting her regularly. To paraphrase the great Jeff Fenech again, she loves yez all but she ain't ready to see any of yez yet. By all means call her on her mobile. I will update this again later tonight or tomorrow.
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