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!!!)