25) Iron Infusion #1-1

March 19, 2022
Friday

The Forms: When I was working with Paragon Infusion Center to schedule and complete their paperwork, the person I talked to on the phone agreed to email me the forms, since I don't like to "Arrive at the office 15 minutes early to complete the paperwork". Years of experience completing paperwork; riding shotgun with Attention Deficit Disorder (ADD); and wrestling with sporadic hand tremors that want my writing to be illegible; I have learned to ask for "the paperwork" ahead of time to complete at home and bring with me or submit as a pdf.

The receptionist agreed and pretty soon I was sitting at my desk with a 10 page pdf packet to work on.  And, it asked for some data that I had to research myself to find.  For example, they wanted a list on all my surgeries, which I only have interspersed in my medical folders that are organized by my ADD self. That list, with dates, and locations came to twelve, only going back to 2001, and taking an hour or two to find.  Fortunately I have medical blogs that go back to 2006 and can be searched by subject! So, I submitted the packet and showed up for my first session.

The Intake meeting and discussion was facilitated by Elizabeth about the information they needed and the consent forms language and I brought up how concerned I was about the warnings and disclosures about the upcoming "infusion".

put some quotes from the forms here necessitating emails to docs about warnings.

Getting cannulated by Sheryl ~smooth! The infusion went well. Afterwards I returned home and was somewhat tired out. 

Infusion # 1

           

Infusion #2

24) Two Labs in Two Days for Two Docs

Two Labs in Two Days for Two Docs

February 26, 2022
Saturday

Setup: I had several of my regular doctor's visits scheduled for the end of February and beginning of March and a number (25%) of the docs want lab work done before we meet so they are up-to-date on the status of my disease conditions.  So I had two sets of labs scheduled for a week or two before two of my doctor's appointments; on February 20th and February 24th.  

So, when the lab sends out the reports, they send 2/22 results to my liver doctor's office and the 2/24 results go to the kidney doctor's and they both want different tests done. For example: The kidney doctor can only see on his report the light blue and the liver doctor can only see the light orange.

It's kind of like the blind docs

describing an elephant only on the data they have on their specific chart!  I have BOTH sets of data on MY chart, impelling me to make my HTML chart into a PDF (or JPG) to send to each of the docs... and as long as I'm doing that... I might as well send it to my cardiologist and neurologist as well.

Discussion: One of my ongoing concerns with having too many chiefs (not chefs) stirring the pot (purposeful mixed metaphor) is ensuring that the decisions are made somewhat collaboratively and that all the docs are seeing and agreeing on the whole elephant.  This is challenging for patients with chronic health conditions who have a number of doctors, and specialists that have that generally patients who have complex medical issues with many doctors involved want more communications between the doctors treating them. It was acknowledged that "better communication among health care providers would improve patient care..." and could "...eliminate potential mistakes, such as medication interactions..." or even which medications might be better suited in certain situations.

February 28, 2022
Monday

Texas Liver Institute 3 Month Follow Up: At my follow up appointment with FNP Pingleton, the provider who took my case from Dr. Jennifer Wells when she left TLI, I verified that each of my docs receive only their own lab reports from Clinical Path Labs (CPL) so when my various docs ask for different lab analyses

those data are only sent to them... unless I make a PDF of ALL the labs and send it to the other docs! For example, only my liver doc got the following that shows how low

my Iron Saturation is: my kidney doc didn't get that low rating because it wasn't requested in his lab request.  So, FNP Pingleton has made a referral to Dr. Poreddy for a "capsule study" to look around the corners Poreddy didn't get with his colonoscopy or EGD reach.  Meanwhile, when Dr. Baru saw the lab analysis I made a PDF of and forwarded to the Austin Kidney Associates portal, he referred me to a new provider (Paragon Austin Infusion Center) for monthly Iron Infusions.

February 29, 2022
Tuesday

Dr. Manchanda - Associated Neurological Specialties Follow Up: Liz and I met with Dr. Manchanda, who went over my recent lab reports carefully and agreed with Dr. Baru taking me off aspirin completely.  Dr. Manchanda also listened to our reports about all the recent procedures and assessments I've been through.  Afterwards he did a basic neurological... directing me to walk back & forth in his office to watch my gait, testing my arms and legs' push / pull strength (motor strength & control), tremor check, and  coordination (quickly touch your finger to your nose and then to the doctor’s hand). He was focused on his exam and not overly talkative: rather watching and listening closely... and I got the impression he was paying attention to how fuzzy my brain and memory are today.

Dr M. concluded that he wants no changes in meds, copies of any lab reports that other docs are ordering, and for us to return in three months for another followup.   

23) Gratitude for my Physicians: bringing me through last year and preparing me for 2022.

January 23, 2022
Sunday

Some people prepare for the new year with a night on the town for celebration and "ringing in the new year".  Maybe not so much THIS year; many of us still being in the midst of our COVID 19 - Coronavirus pandemic. It seems that the coronavirus was making the rounds to all the parties though, having a good time whooping it up and laying people out!

Here in Austin 32.3% of the population has not yet been vaccinated and 28.1% has been vaccinated AND gotten their coronavirus booster shots.  As a person who is defined as having the following risks, I have spent minimal time outside my home over the past year:

1.  Immunosuppressant medications take for kidney transplant
2.  Hypertension
3.  Non-alcoholic cirrhosis of liver
4.  Hereditary hemorrhagic telangiectasia ("HHT ~ What we're all here about!")

One of the things I was meaning to do around New Year's Day and am finally getting to it today, is writing about my gratitude to all the multicultural team of doctors who've served me with dedication, brilliance, and veracity throughout the year.

Through it all has been Dr. Russell Krienke, my primary care doc (ARC) for 40 years now who has been there for me through thick & thin; been authentic, knowledgeable about everything I threw at him over the years (allergies, asthma, sprains and internal stuff and make great referrals to most of the others) The rest, in order of appearance, include Dr. Joseph Leary, who operated on my nasal polyps, helped me with nosebleeds and helped me realize the need for my further medical work related to HHT; leading to Dr. John Battaile at Southwestern Medical Center in Dallas where I've had minimal on site contact but even though... Battaile has emailed me, sent HHT Genetic Testing Kits, and consulted over the phone with me several times about my liver issues.

And, of course, even though he retired several years ago now, I would be seriously amiss if I didn't mention the guy that originally told me "...this cadaver kidney looks so good, I'd take it for my daughter if she needed one!"  That guy is the former director of the St David's Kidney Transplant Center; Dr. Richard Lewis.  There's lots of mentions and stories about Dr. Lewis in my other Blog, Jack's Kidney Adventure.  After Lewis left St. David's, I returned to Austin Kidney Associates and have been a patient of Dr. Ashvin Baru, another doc I consider to be a genius because of the way he has adjusted and creatively handled my medications and because of his patient communication skills. He has also stayed abreast of my other docs, what they are prescribing for me, and why.

Dr. Lewis also connected me to three of my other incredible docs, Dr. Grady Bruce, my favorite urologist, who has helped me deliver a kidney stone one time, kept track of my prostate meds, and offered to install a VCD if I thought I needed one.  Then there's my heart guy,  Dr. Robert Wozniak, the cardiologist who keeps track of my blood pressure related to kidney and liver issues, sets up stress tests when necessary, and most recently an echocardiogram on Liz's birthday!  Dr. Baru suggested I might lower my blood pressure by having my old friend Fistula removed, and Dr. Wozniak agreed so we found a vascular surgeon, Dr. David Nation to consult and then put me back in Seton hospital for the fistula operation on June 15th (see Post #469 in Jack's Kidney Adventure for more on this "procedure'). 

 

Dr. Lewis also sent me to Dr. Stacia Miles for some blemishes on my skin he was worried about and she became my favorite dermatologist.  She meets with me every 6 months and goes over my body carefully and has over the years found two patches that turned out to be basal cell carcinoma which she then had to dig out and send somewhere for analysis. The last one was just recently, in her office, on November 15th.  She's very nice and always interested in conversing about teaching, working with people, and my most current medical adventures.

This year I also added Dr. Neeraj Manchanda who discovered my stroke from viewing my recent MRI, called early on a Sunday morning, and sent me immediately to St. David's South Community Hospital ER for treatment and analysis, of an acute cerebellar stroke, and whom I've been seeing ever since to ensure I'm not one of the people aged 70 to 79 whose mortality rate is 13.4%.

  
In May I found myself with a "macular hole". Dr. Mark Levitan put me in Seton Hospital for a vitrectomy after I was referred to him by Dr. Lindsey (my eye doc) related to seeing funny parallel lines coming together on one of her "Amsler Test" cards...nestled in our kitchen sundry basket for years... which I would look at every so often to see if the lines stayed parallel (see Post #14 in this Blog).  Well, they finally moved closer together. I visited Dr. Lindsey and she sent me right over to Dr. Levitan and he explained macular holes and set me up for surgery on May 5th (Post #15). 

 

Finally, in October I met my most recent new doc, Dr. Delfino Lorenzo, who identified that my ongoing groin pain when walking or climbing the stairs too many times a day... was an inguinal hernia (Post #20). It was not a linguine hernia, like my fuzzy brain keeps wanting to call it. A couple of weeks later, he had me in St. David's South Austin Hospital for tucking, screening, and patching and back home after noon that day.

So, I offer this post to announce to my blogsters the boundless gratitude I have for my amazing  team of ardent doctors who have each been an important part of my ongoing medical adventures. As I identified  and was appreciated each one of these folks above I am reminded (as Liz frequently makes me aware of) just how many medical issues and procedures I had in 2021!  It's been quite a year... and we have done really well, considering our whole nations immersion in the ongoing pandemic that has involved practically every human on the planet!

Fortunately, I continue to work from home and can arrange doctor's visits either virtually or at times when it is easy to slip in and out of the doc's office safely by following safety procedures:   ~~😷 + 6👣 + 💉 + 🤲🏻💦 = 🖖🏼~~

22) Year's End Review ~ What ❄ A ❄ Year ❄ 2021

December 9, 2021
Thursday 

If you're like me you may only check people's blogs when the image of them crosses your consciousness.  Or, maybe annually, like I do.  Around this time of the year I get to wondering what my friends, colleagues, and mentors are up to and if I haven't had ongoing contact with them I make it a point during the November-December-January holiday season.

Like many people in my age group (demographic, cohort, comrades, etc) I suspect that the urge to contact people at this time of the year began when we left home to go to college, the military, or anywhere far enough from our parents that we could begin to individuate. We "baby boomers" (now 57 to 75 years old) are living longer than any previous generation and that means we are living with medical baggage that a productive cadre of medical researchers, inventors, doctors, and pharmacists has bestowed upon us to keep us from the inevitable withering away...("...all return to the dust"). 

When I hear the stories of my friends and colleagues who are receiving the benefit of the medical advances of the last 50 years it reminds me that:

• Life expectancy is up from 68 due to "...the availability of more effective treatment... to nearly 80."
• The medical practice of transplanting organs or installing artificial organs has become common.
• The "...impact of pharmaceuticals such as antihypertensives and statins has been undeniable for stemming loss of life from the leading killers". 
• Advancements in pre and post secondary care has added prevention and specialized treatment to the breadth and depth of our medical options.
• And many more to name here...

December 23, 2021
Thursday 

So, the holiday and season's greeting cards are finally out (except for any I forgot and will remember when I get same from folks).  Paper cards went snail mail to my relatives and people who we have physical addresses for; email cards went to people I stay in touch with via email; and texts to friends on Facebook or those I only have phone numbers for.

I've had a couple more medical tests for the holidays... blood work and sonogram for my hepatologist and an echocardiogram for my Cardiologist yesterday.  At the echo my BP was 118/56, so that is pleasant to hear!
It is somewhat comforting to hear from various people that either they, or their partners are "going through it" ←[which sounds to me like a positive phrase for people's medical challenges... rather than the more deficit / negative sounding nomenclature] "Going through it" suggests to me that there is an other side... one in which we are adjusted to, healed from, or successfully living with whatever ails us and keeps us in ongoing conversation and consulting with the medical profession.  "You may say I'm a dreamer but I'm not the only one.*"

Bringing positive thinking and language to your conversations with doctors and the narratives you create about your physical condition is being shown by research to have a beneficial effect "...enables you to cope better with stressful situations, which reduces the harmful health effects of stress on your body."

So, in this season of reconnecting with friends, sharing good tidings, and wishing the best for everyone we care about, we are also hoping to put a healing message out there for the benefit of all who can hear it.  And, as with the current messages about how to respond to the pandemic, this "...message is a call to those whose hour is to awaken, and it is a lullaby to those who are still meant to sleep."** 

*  John Lennon, Imagine.

** Hazrat Inayat Khan

21) Annual Appointment with my Dermatologist

November 15, 2021
Monday 

Annual Checkup: It was a friendly review, seeing Dr. Miles after missing several 6-month follow ups over the last year and a half, or however long the damn Covid-19 pandemic has been terrorizing us.  She was curious and concerned about how I am recovering from the stroke so that topic guided our conversation as she was inspecting every blemish and dark spot on my body.

I directed her to look at the scaly spot on top of my head that bothered me enough to make today's appointment... and she agreed it looked suspicious and cut out a hunk of tissue for a biopsy.

A few days later, Miles' nurse called and reported that it is basal cell carcinoma and we set an appointment for January 13th for Mohs surgery (probably: I think that's what she did last time, several years ago).

 November 28, 2021

Sunday

I have this proclivity for picking at scaly spots and scabs and have been trying not to do so with the one from Dr. Miles' scraping.  Last night I noticed in touching the scab, that it has sprouted a little patch of hair growing out of the middle of it!  

Hairy Scab

This fascinated me so I talked Liz into taking a  picture of it for me to inspect.  It took a few tries before she got a clear picture that shows the short hair growing right up outa the middle of the scab. This amazes me and will help me to keep from picking at it until I go to Dr. Miles in January.

Liz and I agreed that we have a lot to be      thankful for this holiday season, even though it is now questionable to call the holiday "Thanksgiving" in honoring the indigenous peoples who were systemically annihilated by the Europeans that "settled" the New World (which was actually the old world of the people already living here). And even though there's such a division of the political, moral, and philosophic beliefs that has divided our country we have gratitude for our friends and family and the blessings we keep close during these scary times. So it goes!

20) More Musings on Wrinkles and Other October Hobgoblins

 September 6, 2021
Monday 

Integration Rationale: My body seems to be rebelling against me! 

Next skirmish: the groin pain is a hernia! Hernia surgery and a bonus colonoscopy afterwards scheduled for October 1st. Is there a body part that hasn't been poked and prodded?

This post is presented as sort of a digest since it has gotten hard for my fuzzy brain to keep everything straight... and so once in awhile it is just better to do a "monthly" post, it seems. 

Actually, at times I worry that about the origin (analysis?) of my "fuzzy brain" or "brain fog" is explained by the stroke, or ammonia in my liver, or over medication, or too little protein, or older age memory loss, or over worrying. [So it goes]

October 1, 2021
Friday

South Austin St. David's Hospital: We're here at 5:30 in the morning to check me in for my colonoscopy first and then my open inguinal hernia operation. The whole thing went very smoothly.  

#1 Finding: No major polyps in my colon and now I am old enough that they don't recommend getting a look up there every five years!  Since I've had two pretty clean ones, no more are needed unless there's a specific reason to check it out again. (Good news after having about six colonoscopies over the last twenty years).

#2 Report: Hernia is retucked and screened in and then the incision is glued shut... no more stitches in areas that get movement! 

I'm awake by 12:30 and home by 3 pm! By 8 pm I can feel my pain and take some pain meds, although it's not too bad except when I walk or go up the stairs. 

Returning to some form of consciousness: This afternoon I'm also aware that today is my dad's birthday... he would have been 99 today.  I have a picture of Dad holding my son, John behind a cake on the counter that has a 64 on it: John IV is 2 and John III (me) is 39. Today John IV is 37 and I was 37 when he was born in 1984.

These mathematical details fill my drowsy mind as I return to the here and now and begin to understand that something somewhat painful happened down in my groin. 

Followup with Dr. Lorenzo went good, although I do have some intermittent pain when walking or going up and down the stairs thirty times a day. He says walk it out... slowly at first.

October 28, 2021
Thursday

In for a stress test for Dr. Wozniak: no eating or coffee before hand and the test wasn't until noon. This type of nuclear stress test is "done to show how well blood flows through the heart... (and how well the heart is pumping)... during rest and... exercise."  See Nuclear Stress Test for more information.  Got the results on November 5th: "Normal left ventricular ejection fraction; normal myocardial perfusion scan; and Indeterminate lexiscan stress test" which Neva Schmelzer, FNP wrote up as "normal".  NOTE: it is like music to my ears, reading that something in me is "normal".

19) The Next Shocker

 August  14, 2021

Saturday 

Now we have Liz home and recuperating from her hip replacement (with PT visits), Shayna doing most of the housework, and she and I sharing cooking and cleaning. Liz is feeling pretty good while still taking minimal pain meds and napping a lot. Friends have been sending or bringing over meals, care packages, and treats.

The bad news is hearing about the death of one of my old co-workers from Youth Options, an agency we worked at together for about ten years. Mostly Keith K. and I worked together as colleagues developing a youth-led supportive counseling project but we also worked together preparing a supervision plan for a young employee he supervised who had challenges with work rules. Keith was always one of the most positive, friendly, and energetic staff members. He was respected and liked by the young people he mentored and he was an integral staff member of the agency's PEAKS program that provided a adventure-based camping experience to inner city and state conservatorship adolescents. A younger man; Keith passed away in his sleep, adding to the mystery and the wrinkles of life... and time.  

I ponder how an old fart like me can bounce through the rough and tumble of life's wrinkles in time and then another man who ostensibly is traveling down a somewhat similar track can suddenly be sidetracked onto a different cosmic spur that takes them into the unknown territory post "living". I'm reminded of many of the metaphors in Tolkien's short story, "Leaf By Niggle", in which the protagonist boards a train to the "back country" after making himself ill taking care of others in his neighborhood.  With this short dispatch I honor the life of my friend Keith.