8.29 .22: great day. started a little slow with a fall this morning… but the physical and occupational therapy worked with me. eventually got my mojo back… a nurse said she would come in to ‘walk me’ in the afternoon – which I have been dying to do. But she didn’t come even after a couple hours
So I expressed some anger while The PA kept saying ‘you know it’s hard to plan in a hospital.’ I pointed out that there were plenty of people doing nothing and even if they were busy, she should’ve stopped by and told me that her plans had changed.
That is the problem with healthcare in some areas. It’s a matter of personal respect and nothing more. I explained that I can’t always help my patients. but I don’t ignore them!
I had an absolutely fabulous Doc in Madani. Completely world class. but I felt even better about him when I explained what happened and he thanked me. ‘ we can’t create a great program if you don’t hear about these things’ he said. Very cool. Defensive docs probably have things to hide.
I hear from so many of you about stigma. Someone just wrote to me a week ago thanking me for pain medication for the major surgery because surgeon said “I can’t give you pain medicine because of your history’.
I might have different attitude If I wasn’t aware of all of the studies that describe poor surgical outcomes when pain is not treated. even from an addiction standpoint, studies have shown that withholding narcotics INCREASES the seeking of them. There are many studies supporting the use of PCA patient controlled analgesia and people with history of addiction. After over 20 years, I don’t consider my history real strong. but so many people in medicine use the history as a permanent blemish — even as they wonder how to fix the addiction problem!
bottom line, I encouraged everybody to be a strong advocate for yourself. Maybe you wonder if your recovery is solid, and if so, has someone else control the pills for you. but if you’re paying $50,000 or $100,000 for their care, do you have a right to get treated at least as well as any other patient!
Another thing on my mind… A number of you sent me emails saying that you got my letter but never read it, I read it after six weeks and didn’t know you had to request medication‘s. That’s where the patient responsibility lies. I rarely send out letters… so if you get one for me, read it! It might be important! If I have the wrong address for you, please get in touch with Nancy as soon as this mess is over and give her your correct address.if I have the wrong address for you, please get in touch with Nancy as soon as this mess is over and give her your correct address.
I will try to send out medications on Thursday. tomorrow is a full day with repeat echo, an exercise stress test, and (hopefully) a couple walks.A couple walks.
Also, my condolences to the family of Justin, who died in a car accident recently. He was a friend of my son.
For those of you who liked to come in and ask me, “what should I do if you die?” I don’t think it’s going to happen so you’re off the hook this time. I am optimistically planning to be home by this upcoming Saturday. I have to stay out of a fib, not develop a pericardial effusion, not let my pneumothorax get any bigger, and show no sign of infection. But those things are all passive so I don’t really have to do anything at all!
I’m not sure yet when I will be in the office. The recommendation is to wait till October but I pointed out all I have to do is sit and talk a little bit.
I will also think Common Ground insurance. I have an EPO plan and those rarely cover things that happen out of net work. Do you all know how upset I was when I got denied. But they agreed to cover me in the end after learning about the operation. UC San Diego has done 4300. in second place is temple, which has done 300. i’m not positive but my understanding is that Mayo has done about a dozen. other programs… Emery, Penn, Michigan, Wash U..,. Smaller numbers. Studies don’t list names of each hospital but the hospital that has done ‘one’ has a surgical mortality of 100%. this place? 2%.
be your own advocate and always keep in mind what decisions are yours, what decisions are your doctors. Some are both.
Im alone so l’ll keep writing… I could have sworn I was moved to a different room last night. Nancy insists i’ve been in this room for three days. also I woke up last night and I swear, it was 6 AM. So I turned on the television and two hours later it was 4 AM. in other words, please double check your prescriptions when I’m back at work…
Later the same day…
I swear I’m losing it. The respiratory therapist came in as he does every night to check on my oxygen saturation. he said ‘oh no that’s not good…’
but then he noticed I have the oxygen cannula trying to push air into my cheek. Turns out it works a lot better if it goes into your nose!!
Here is my final report for people who get into that stuff:
NUC MED PULM PERFUSION IMAGING PARTICULATE
Pulmonary thromboembolic disease status post PTE.
The patient was then injected with 4.4 mCi of Tc-99m MAA and the lungs were scanned in multiple projections.
8/16/2022 lung perfusion.
Perfusion images demonstrate heterogeneous perfusion throughout both lungs.
Right lung: There is improved perfusion to the majority of the right lower lobe, with subsegmental defects seen posteriorly. There is restoration of some perfusion to the right middle lobe in the anterior basal segment of the right lower lobe. There is a new defect in the superior segment of the right lower lobe.
Left lung: Multiple subsegmental perfusion defects are seen in the left lung. There is overall improved perfusion to the left lung compared to prior.
I wasn’t happy when I read it but then I talked to the surgeon. he said he went down every branch of the pulmonary artery with his ‘Madani Forceps’. Yes, the forceps are actually named for him. Very long skinny things like tweezers made out of pasta (they probably cost a little more too).
Anyway when I asked him he said that the bigger vessels are even bigger now, and that creates a steal affect, pulling circulation their way and making unaffected vessels less visible. Over time the blood flow will balance, he said, and return to normal.
Isn’t the human body simply amazing? My lungs were filleted open Just a few days ago. My oxygen saturation was horrible. but if you prevent infection and do a few other things, it all heals up!
Oh yes… After my fall today The nurses were a little angry. An aid named Erika wax the one who caught me so I’m not sure what the nurses were upset about… they really want me pushing the button every time I use the bathroom? So tonight after Nancy left I tried to make a dash for the bathroom while nobody was around. They had the bed alarm turned on!!!!!
When they got to my room I had almost figured out how to disable the alarm. Aren’t physical restraints unconstitutional? ‘they don’t trust me anymore.’ our civil liberties, disappearing, one after another…..!
And for Lori who likes optimistic docs, we will talk soon. The last test will be an oxygen test to see if i will handle differences in pressure flying home. Apparently I can’t just say “it worked when I came out so it will work when I go back”.
This writing is so fun… and therapeutic!!! maybe l will bring the talk zone back..,.
Anyone out there watch the Godfather? When I saw my scar today, I put on my best Marlonb Brando and said ”look what they’’ve done,.,,, to my little boy,.,,’ Don’t worry if you missed it because nobody out here understood what I was saying. But if you tell me a character name and the actor who played him, who Marlon was talking about,… i’ll give you a free soda or bottle of water at your next appointment!!
and anyone want your doggies or cats on Google? send their names and we can see what happens!
(request to post doggy photos serves as binding affidavit allowing such use for the photos even if posting results leads to the discovery that YOU may have once had a psych disorder (who else would do such a thing!!!)
People who know me well know that I tear up easily, but mostly about good things. I went to Y in the 1990s and bawled as we sat at a restaurant on a dark beaxj one night. The kids typically roll their eyes.The kids typically roll their eyes.
My Echo this morning was done by a woman who grew up on a farm near Monroe Wisconsin. She described herself as having the gift of gab, so I took on the challenge. We talked about the smells of living on a farm (i didn’t but my mother did, and I often stay med there with my grandparents.)
Then we talked about being inside the house when it is 30 below outside, or watching the snow pour down with a warm fire in the fireplace. of course I got emotional! Then back at my room My pulmonologist talked about living in Swarthmore and training in Philadelphia, a big city of multiple neighborhoods. I watched Rocky just yesterday so of course I teared up again.
I don’t know why they need weatherman here. ’ well another day of 78° and pure sunshine!’! What is the point? What is the point?
You can get too much have a good thing. In Wisconsin a good day might be less common but we really appreciate them when they happen.
What else… some of my patients trade in the stock market. I didn’t trust this month‘s rally. I can’t give investing advice of course but please be careful right now.
I think today is 8.29 but The picture posted last was yesterday so…
I am only half joking but apparently not having brain blood flow for 7-8 ours takes a little bit of recovery. Today I sent to my surgeon, tell my wife how smart it must be to still be talking after that. I don’t think he realized I was joking.today I sent to my surgeon, tell my wife how smart it must be to still be talking after that. I don’t think he realized I was joking.
Many of you are very familiar with my blog. As you know I quit writing in 2013 shortly after the New York Times did their story — which came out a month after my dad died. That was very disappointing and I wondered for years whether he really knew I was talking with a reporter for almost a year to help them prepare the story. So I kind a lost my interest in writing.
so you guys following me has just been a very special thing. I have committed myself to keeping myself sharp every night — no more 2-3 glasses of wine, which was my limit— And also started shortly after my dad died of a large brain hemorrhage.
I would be more than thrilled if you guys wanted to join me to do dedication to accomplishment. I don’t mean making tons of money or anything really… just doing something where you’re learning most days, proud of what you are involved in, and not wasting days away.
That’s the plan anyway, and plans can change. But at least for the next year I have a lot of work to do.
8.31.22: Discharted moments ago…. arrived back at ‘dorm’. I have a lot of work to do to get my breathing back, let alone my Mojo!
I have much to share… Made the decision to speak with someone about the worst nurse on the unit. Everyone else was incredible. Most of the nurses were men, almost all from the Philipines. A couple female nurses described themselves as ‘typical California girls’. You know I would never use such language.
I learned that I hallucinated at least several nights. I got absolutely no sleep for the first 3-4 days after surgery, largely because I would wake, see the clock at 6 AM, and watch tv for 6 hours… then find that it was still only 4 AM. That happened at least 3 nights, and I don’t think I actually slept more than an hour over those 3 nights.
I remembered all these things… on POD 3 evening, I was moved to a special unit just outside the operating room. The lights outside my door were very bright. And the nurse (a man) was this athletic military guy, and he slept on the pull-out sofa to keep a close watch on me — which I almost wrote about as an example of their dedicated care. Although there was a moment when I need help with something and I yelled and he wouldn’t wake up. I threw two of my pillows at him but he kept sleeping.
I told Nancy about it the next day and she believed me because she saw ‘his pillows on the bed’ – the ones I threw.
Then the next night, I was having more pain and splurged with 5 mg of oxycodone. I fell on a pile of pillows, and slept for almost 12 hours. The next day they told me they had no caucasian soldier – looking nurses, and (for some reason) they would never sleep in a patient’s room.
There were others… a late-night transfer to a different room that never happened, etc. They told me those things just happen after this type of surgery.
But Nancy witnessed the bad nurse. He covered me on POD evening 1. I asked for pain medicine and he made a face like I wasn’t strong enough — which made me reluctant to ask for pain meds those first fews days, and probably contributed to my hallucinations.
At one point I asked him for ‘sleeper’ an hour early, and he made a similar face and said ‘you’ll get that when you get it’. He walked in when I accidentally triggered an alarm and said ‘why are you so fidgety??’
But that was a rare thing. I wish I could be friends with those guys — smart, spiritual, world-travelled and aware, and extremely kind. At the least, I will put a visit the Philipines on the bucket list!
I met a person yesterday who had his PTE the day after mine. There are couples in the process all around, most from elsewhere in the country and some from overseas. and I try to talk with them and tell them how OK things will be. I remember those lonely moments of desperation during the first week very well.
But everything is very hard for now. I’m a ‘classically trained typist’ and I bet I usually do 40 WPM. But this post has taken me about 2 hours. I stopped at one point and ordered from Pho — a great Vietnamese restaurant that is popular here. Never had actual Ramen… it is more than just an insta-pot dish for college students. My new fantasy is to bring one to FDL…. I ordered using a gift card sent to me by the wonderful nurses who opened the methadone clinic with me about 7 years ago. We haven’t worked together for several years but they have always been there for me…. when I lost Ed the puggle and so many other times. The person staying in my home mentioned to Nancy that she loves the many birds that eat a couple feet from our windows… Grosbeaks, Sapsuckers, Orioles, Carinals, Red-wing blackbird, Bluebirds and jays….and all the little nameless birds. They come because those same nurses gave me an awesome feeder/suet pirch a couples years ago after I left that endeavor. So many kind people out there.
I had a patent foramen ovale but they fixed and assured my my symptoms are normal. But they are the challenge to sending scripts today, and why I’m shooting for Saturday.
The next day and I can’t remember exactly when and Nancy isn’t around remind me: I just noticed the picture I put up yesterday immediately after leaving the hospital. By 8 PM last night I was dead to the world figuratively I mean. I wasn’t sleepy and it took me till about one or 2 AM to fall asleep. But my mind was just done, and my body close behind.
i’m really hoping to do something fun today. Top of my list would be getting food from McDonald’s, something I haven’t done for a few years but I am craving so strongly for some reason.
There are some things I would like to write about but I just don’t have it in me today yet. Again I see many people who talk about their investing and I hope you guys are OK. Always remember the adage from Mark Twain : history doesn’t repeat itself but it rhymes. The point can be applied to anything that humans do because we are all basically the same. things related to buying and selling especially. Cycles of greed and despair that get repeated over and over. and I have no idea but when I play around with something like the stock market I review what charts did the last time we tried to tackle inflation. Did it work when one branch of government was fighting the other? One spending more and more money (Carter) and the federal raising interest rates?
How could that work?
And of course it didn’t until Reagan cut taxes and spending, and deliberately pushed us into recession for two years. That was a bad time with many boarded up buildings in major cities.
Not saying it will play out this way again but it was so funny how in the weeks before surgery I heard more and more people in the news talking about the new bull market. The market went up strong when inflation ’ decreased’ from 9.6 to 9.3, Even as Powell repeatedly warned that his target was 2%.
people never seem to learn myself included and my life has run a similar course (With maybe some improvements each decade!). we are all human and humans have done the same things for centuries. I wish I studied more history than I did.
It is hard for me to do blogging from my business page, so from hear I’m going to my old talkzone site. it is still around, but after the NYT article some suboxone-hater reported it as a spam site, one more thing that took from top of Google for ‘opioid addiction’ down to page…. 40? That was another reason I simply stopped adding to it.
A quick note about investint… the hardest is being patient, and watching people ‘make money’ when you are almost certain their gains won’t last. These are my personal opinions, and I would be horrified if someone trusted me without finding their own answers. My personal favorite podcast is at financialsense.com. I subscribe but they have a great free show every weekend. Great example at this link: https://www.financialsense.com/video/20350/weekly-update-something-has-give
But I set up a new domain at suboxone talk domain at suboxonetalk.com.
I plan to catch a plane out of this dirtbag town on Saturday…. see you soon! Nancy left our plans for I will continue this thread in case you’re interested….. the next post will be entitled
Repiratory Alkalosis’! Boy, know my marketing… but it has played a roled in my illness and was important in the anesthesia days. I’ll explain as we go!!!