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Journey: The Cardiac Edition

In the beginning, the Journey was about the Lymphoma cancer diagnosis. In the last year it has expanded to cover some other health issues. Today, we really move into the “Cardiac Edition” with the kickoff to heart surgery.

We’re up at 6am and off to St. Boniface Hospital for a 7:30 am meeting with the Cardiac Pre-Operative Assessment Clinic team. For those of you interested skipping to the outcome, click here, otherwise read on.

The team is a nurse, ECG tech, a nurse practitioner and the cardiac anesthesiologist.

The nurse confirms all my basic info, records height & weight, temperature, blood pressure (sitting & standing). All my medications and vitamins are reviewed and recorded. The contents of the pre-op package of printed material is reviewed. Special attention is given to what I need to do the night before and the morning of the surgery. Blood is collected for testing and an ECG is performed. The last test is to get a chest x-ray on the way out of the hospital.

The nurse practitioner confirms my medical history and confirms in more detail all my medications. She reviews all my symptoms related to the heart issue. She performs a physical examination. In addition to discussing the surgery she reviews what to expect post-surgery and highlights of the recovery process. The recovery is quite lengthy with the sternum that they cut open healing in about three months. There is a lot of detail on exercises you need to do both in hospital and after discharge to give me the best outcome. Lots of things you can’t do for quite a while, like basically don’t use your arms because it, stresses the sternum which is trying to heal. No pushing, pulling, lifting, no driving for 4 to 6 weeks, etc. etc. I’ll need to get used to asking for help and letting others do quite a bit of stuff. Deep breathing and walking seem to be key exercises.

The cardiac anesthesiologist shares his understanding of my situation gleaned from my hospital history files and his consultation with the nurse practitioner. He explains more about the nitty gritty of the surgery, the risks and benefits and answers all our questions.
He feels that I’m an excellent candidate and will do well in my recovery.

Summary:

  • I’m on the cardiac surgery wait list and flagged as “urgent”.
  • I will get a phone call with the date of the surgery. The date is likely to be “within days to a couple of weeks”.
  • The phone call is likely to be on a Friday morning with a date in the following week.
  • I’ve completed all the pre-op testing.
  • Surgery is typically 3-5 hours.
  • Hospital stay is typically 5-7 days
  • Full recovery is over the following 3+ months

Just waiting for the phone call with the surgery date.

At this point we are both feeling quite overwhelmed with the enormity of the journey ahead but we are also relieved and encouraged that things are moving ahead quickly. Our God is good.

Ps 91:2 I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”

More details

Cardiac Sciences Program website for additional information and videos including:

Your Heart, Your Health A Patients Guide To Heart Surgery – YouTube –

Patient guide to heart surgery book: https://cardiacsciencesmb.ca/wp-content/uploads/2021/04/PatientGuidetoHeartSurgeryEnglish.pdf

Heart and stroke “Living well with heart disease” book

Moving safely after heart surgery pdf/book

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Strength of my Heart

I use the YouVersion Bible app to guide my bible reading and every day it presents a Verse of the Day. 

Today’s Verse of the Day, on the day I’m having my angiogram, is Psalm 73:26.

Then the YouVersion Bible app “randomly” brings up a prayer request from my list entitled “Chest Pain” that started back in February.

Today the testing has arrived.

That prayer was followed by this one…

The MIBI testing on Nov 27 & 28, 2023 shows there are blockages that lead to today’s angiogram. 

More than ever I’ll need to rely on God to be the “strength of my heart” as today’s angiogram revealed several significant blockages that they were unable to open with stents today. 

The recommendation is for bypass surgery to address three blockage areas. While I knew that this was a possibility it still comes as a bit of a shock and something I’m struggling coming to terms with.

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November Update

I’m starting this post on 2023/11/06 and it’s a collection of events and thoughts that on their own may not warrant an immediate post which causes a few subscribers to get an email. However, there are some things I’d just like to record for posterity that are probably are of limited interest. At some point in the future I’ll publish it but for now it will just hang around as a draft.

2023/11/02 – IVIG

Into St. Boniface CancerCare for the monthly IVIG treatment. Things go smoothly and I’m in the chair for about two and one half hours.

2023/11/03 – Stelara Injection

It’s been 8 weeks since the start of the Stelara treatments with the IV infusion and now it’s a do it yourself program at home. After a couple of phone calls to set up the delivery to the house a 2′ square box arrives with the injection needle.

The box is heavily insulated and ice packed. The product needs to be refrigerated and since it arrived over a week early it gets popped into the fridge.

The day arrives and much like injecting the Grastofil that I’ve done before a few times the procedure is similar, in the belly and 2″ away from the button and stab away. Pretty uneventful and no negative reactions. To date I can’t determine if the Stelara is helping but the advise is that it’s a slow build and effects might take 2-6 months.

2023/11/06 – PITA Checkup

Into St. Boniface to see Dr. Hyun for a look see on the perianal issue. Hopefully, I’ll get a copy of the capsule endoscopy for my records. While I’m here I’ll get some blood work done for another upcoming checkup with the oncologist.

2023/11/27 – MPI scan: Part 1

A Myocardial Perfusion Imaging (MPI) scan is a test that looks at the blood flow to the heart. It consists of two parts: A rest test (today) and stress test(tomorrow). It is sometimes called a MIBI scan.

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Good News

Shirley and I met with the oncologist this morning and it was all good news.

Over the last few weeks there has been some testing to see if there is any cancer activity in my body and how I responded to the radiation treatment in June. There was blood work, a CT scan of my neck, chest, abdomen and pelvis plus a PET scan from my neck to mid-thigh.

Then there was the waiting. I must admit I was quite a bit more anxious about today’s meeting after all the other non-cancer medical issues I’ve experienced over the last year on top of the lymphoma reoccurrence . With the testing and the waiting it felt like my life was slowly being put on pause awaiting this result.

The CT results were clear, not detecting any lymphoma. Similarly, the PET scan was clear in the left armpit where previously there had been suspected lymphoma activity. As the report put it the issue had been “resolved”.

After the meeting it felt like the play button had been pressed and I seem to have the desire and motivation to get on with living a fuller life.

The blood work was a bit of up and down. Some indicators had improved and some dipped a bit. The doctor wasn’t concerned and no immediate treatment is planned. In fact while I’ll still have the monthly IVIG treatments there is nothing else planned except monthly bloodwork and a checkup in three months.

Of course things wouldn’t be complete without some numbers and graphs.

White blood cell count took a bit of a dip 😕
Platelets and hemoglobin are slowly edging up to the normal zone
LDH under control

We are so very thankful for this good news and thankful for all of you who have prayed for and supported us in this journey. God bless you all.

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Busy Week

A lot of appointments during the week of Sept 11-15. Several were bounced into this week to free up time to go to the lake for longer periods.

Monday September 10th

It’s up early to get blood work done at St. Boniface for an afternoon meeting with the oncologist. The guy taking blood was a student and I think he was a little nervous as his hands were shaking as he labeled the tubes. Thankfully he was steady as he inserted the needle. Things were good until the last tube when the flow stopped. He called over the senior technician who fished around with the needle a bit and got the flow going to finish the collection.

In the afternoon I saw Kelly, the clinic nurse, Dr. Moltzan and the new assistant to Dr. Moltzan. We reviewed my recent medical history and the blood work was “acceptable”, counts are still on the low side but generally my immune system is not too bad. There will be a PET scan on October 17th and a review meeting shortly after that to get the news on the suspected arm pit lymphoma and the effectiveness of the radiation. The Grastofil injections have stopped but the IVIG infusions will continue for six treatments. The next is on October 5th.

For those of you like me who like numbers and charts here you go.

A bit hard to see but HgB is 115 and PLT at 112. Low but going the right direction
One normal (ANC) and one low (WBC)

Tuesday September 11th

Going to the dentist is not exactly a “Journey” item but the Journey has caused several delays in getting this dental work so here we are squeezing this appointment in with the other more medical items. Hope you don’t mind. 😊

8am for the dental implant that takes exactly one hour as promised along with the mega-payment $$$. Recovery is easy with no complications and a check up to remove the stitches in two weeks.

Later in the morning we’re heading over to St. Boniface to meet with the colorectal surgeon. We’re in the car minutes away from our pre-paid parking spot behind 400 Tache and his assistant calls to cancel the appointment. He has been delayed in surgery and can’t make it. We re-route to Costco for some shopping and then back home. He calls later in the day and we discuss things but it’s a little pointless without a physical exam. We send pictures and don’t hear back. We will schedule another appointment.

The evening and night is consumed by the prep for tomorrow’s activity. This keeps me close to the washroom.

Wednesday September 12th

It’s capsule endoscopy day one, 8am at the HSC. I swallow the pill camera, get the recording gear strapped on and leave.

Swallow this…

… strap this on around your waist…

… and plug this in and you’re good to go!

Thursday September 13th

I’m back at HSC for 8am just to return the equipment. And no, I don’t have to return the pill camera . 🤣

Friday September 14th

We see my GI guy for the first time in person. We’ve had several phone calls and even started the Stelara drug all without physical contact. It seems strange to me but he’s not concerned and this I guess is the new “normal”. He reviews my case to date and then I ask several questions and the responses all seem to start with “Well, that’s a good question.”. “

“Do I have Crohn’s?”. “We’ll, that’s a good question.”.
“How will I know if Stelara is working?”. “We’ll, that’s a good question.”.

There seem to be quite a few unknows and vagaries in my situation from a diagnosis and treatment perspective. However, the pain is under good control and the perianal wound and infections are improving so perhaps the Stelara is working, it’s a good question.

So, that was my medical week. For the next while I don’t have too many appointments so we’re going to enjoy some normal times at the lake.

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Stelara

The lymphoma is taking a bit of a back seat for a while. A PET scan is scheduled for October 17th to see the results of the radiation treatments. Today, I’m getting the initial Stelara treatment via an IV and from here on out, every 8 weeks, I’ll receive syringes pre-loaded with Stelara for me to inject at home.

Today’s IV is planned to take one hour but from the rate I’m seeing it might take longer. The infusion site is in a strip mall office building and has the vibe of a converted apartment. Two nurses are running the show and everyone seems very relaxed, except me.

For some reason I’m a bit apprehensive about this treatment. I’m not sure why after all the meds I’ve had stuffed in my body over the last several years. Perhaps it’s the lack of clarity around the diagnosis that I have Crohn’s, It seems like the doctors have ruled out most other things and Crohn’s is what’s left, less than a positive diagnosis in my opinion.

On the more mundane, starting the IV was a little interesting. Lately, my veins have been less than cooperative and quite a few nurses had significant problems with starting an IV. Today was no exception. After poking around quite a bit on attempt #1 on my forearm attempt #2 was on the back of my hand. This attempt struck pay dirt immediately and the nurse was not quite ready. The IV line was not attached to the needle and blood was rolling down my hand, a first for me. The flood was quickly contained and Stelara was flowing in. No turning back now,

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Looking Up

There have been two blood tests to see how my various cell counts are doing and the news is good, as the counts are up on both August 8 and 21.

Both hemoglobin and platelets are getting closer to the normal range.

I can feel the improvement in going up the stairs at the lake. Two weeks ago I had to stop several times on the way up. Now I can go up from the dock to the driveway without stoping, a big improvement.

ANC (Absolute Neutrophil Count) WBC (White Blood Count)

All these numbers are currently being helped along by injections of Grastofil twice a week and IVIG every four weeks. Shortly, I’ll stop these “helpers” and find out if my bone marrow can maintain these numbers without any assistance.

Once I can maintain numbers near or in the normal range on my own, the biologic Stelara to deal with the Crohns will be administered.

Life is returning to normal with time spent at the lake along with several outings to attend two memorial services and a 50th wedding anniversary of longtime friends this past week.

We are so very thankful for continuing improvement and appreciate all of your support and encouragement.

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Week and Weak

It’s been a week at home and I’m learning how weak a month in hospital can make you!

The first week at home has been great and I‘m enjoying all the comforts of home and the freedom of the bigger space. I’ve even gone solo on a couple of walks and driving the car too!

Being weak in the legs was a bigger thing than I expected. It’s really noticeable on the stairs and squatting down and then trying to get back up is really hard without a little push or pull to get going. Seems like it will take some time to build back up.

I may be out of the hospital but the week was not without a couple of return visits. First up was Oncology/Hematology and then later in the week was Dr Gingerich at the Pain Management Clinic.

Monday’s oncology/hematology appointment was to review the blood work which resulted in some additional medications. As the numbers continue a slow slide in the wrong direction, the decision is made to give my immune system a bit of help with some Grastofil injections twice a week. A bit of Deja vu as I’ve done the same injections back in 2018 with the first go round with chemotherapy.

The next medication is IVIG, again something I recently had in hospital and back in 2018 with the first treatment of the lymphoma. Since this is administered via IV it’s a trip to the hospital for several hours as IVIG is slowly administered to watch for any side effects. If there are no issues the infusion rate is increased every 15 minutes. The primary goal with IVIG is to increase my platelet count which helps to manage blood clotting and helps my overall immune system as well.

Platelets and Hemoglobin both need some help

The Thursday appointment at the pain management clinic went well. My pain is well controlled now at a 0-1 on a scale of 0-10 so that is a tremendous improvement. The plan is to maintain the current level of Fentanyl for two weeks and then start a very slow downward taper and see how that goes.

Next week on August 2nd it’s a visit with my GP. The hospital set this up when I was discharged to bring him up to speed on everything that’s happened during my hospital stay.

Speaking of what happened during my hospital stay, I managed to get some additional infections probably due to my low blood counts, my almost non-existent immune system and the proximity to the perianal abscess/fistulas which is not exactly a sterile area. This resulted in the wound care nurse specialist getting involved which lead to daily wound care to work towards clearing up these infections.

Once we left the hospital, Home Care nurses are providing the on-going wound care as well as the associated supplies. Shirley has been learning the wound care process both in hospital and from the home care nurses and has become quite proficient. At this point Shirley feels capable of looking after the wound care which makes the process much more manageable especially as we plan on going to the lake soon.

I’m happy to report that I’m doing so much better and we are looking forward to some lake time with our family!

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The Eagle Has Landed

After a brief 33 day stay in the hospital, I’m back home and the journey continues.

It is so good to be back at home and resume a more normal life with Shirley.

I’ll be closely followed by my oncologist/hematologist Dr Moltzan.

In fact I have my first outpatient appointment on Monday. Just a few minutes ago they took extra blood for more tests beyond the standard 6am blood work.

In addition an appointment has been arranged with my GP Dr Oladini to keep him in the loop and have him as the quarterback, coordinating all the specialists on my case.

Home care to help manage the wound care has also been arranged and I have already received supplies in the hospital and our first home care visit is Sunday.

We are so thankful for the excellent care that I’ve received from all the hospital staff including the health care aides who kept my room clean and brought meals, the nurses who execute the bulk of my care, and the many specialists who consulted on my complex case.

We are extremely thankful for all who prayed, texted, emailed, visited, and supported Shirley and I during this part of our journey.

Most importantly we thank the Lord for His supernatural healing power working in tandem with the care provided by our medical team to bring us to my home coming!

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Transitions, Numbers and More

How Long?

“How long has this been going on?” A song by Ace, a one hit wonder comes to mind these days. If you give it a listen it’s quite likely you will recognize the song. How long has it been going on? Well, today is day 31! Yikes, my longest hospital stay ever.

The current plan is to go home this Friday July 21, 2023 after a 33 day hospital stay. There will be “close” outpatient follow-up with the CancerCare group. They will provide the Oncology and Hematology care which is the main focus of my “issues”. “Close” has not been defined yet, but at a minimum, I think it will be weekly blood work, possible Grastofil injections, and a checkpoint visit.

Continue reading “Transitions, Numbers and More”