The Personal Experience Profile of John Wade

 This is a document I never envisioned I’d ever be creating. I provide this for your review, recommendations and comments. Believe, don’t believe--everything is ATTITUDE! Your choice--your consequence. As Shakespeare said,” There is nothing neither good or bad, but thinking makes it so.” Ponder that. My name is John. I am 46 years young. I am a special education teacher of almost twenty years working with the most severely emotionally involved students. Recently (3-7-00) diagnosed with end stage IPF-ldiopathic Pulmonary Fibrosis! UIP--Usual Interstitial Pnemonitis. The prognosis isn’t good- the alternative is worse. Adversity-­I’ve chosen it to be my friend and mentor. I’m learning so much from this life changing experience.  So, here’s my story. I am the proud father of two beautiful adult children and soon to be a grandfather (12-7-00). I have been married to my soul mate for 23 years, known her for 31. We’re high school sweethearts----we’re still sweethearts!! The key to my positive mental attitude and perseverance is the love and support of my ‘care givers’. This condition, experience, is far harder on them then I. I pray for their strength and patience. Strength to endure the roller coaster of my emotions, moods, and challenges this disease provides and patience to process the wealth of knowledge this presents us. The strength of prayer, positive mental attitude, exercise are all instrumental in our daily routine of dealing with the realities of this condition.

 

Historical/Hysterical Profile 

My symptoms started in September of 1999. After an act of vandalism in my place of work , where fire extinguishers were discharged, I noticed difficulty breathing, shortness of breath, non-productive coughs, fatigue. These symptoms were accelerating and intensifying around Thanksgiving time. I mentioned I needed to get a full physical during the holidays. Well, the holidays came and went. My condition worsened until I had such a respiratory episode at work that dropped me to my knees, then again at home that evening, and again upon waking up for work. (Jan 2000) I promptly contacted my physician who treated me for double pneumonia (Bioxin). After two weeks of no improvement, I was referred to a Pulmonologist. (Feb 2000) I went through the batteries of PFT’s, I was unable to complete the walking component of the initial test. My heart rate jumped to 188, my 02 diffusion (Saturation) dropped to 79%. No one has mentioned OXYGEN!! That comes in April at one of several consultations at National Jewish. I was scheduled for a Bronchoscopy with the lavage, and was placed on Prednisone (40mg/day) treatment plan. Upon review of test results and some ‘confusion’ on the part of the specialists, I opted to connect with a different Pulmonologist (Feb 2000). He reviewed my records, CT Scans, X-rays, Lavage, and scheduled me for a thoroscopy three days later. (March 5, 2000). I was diagnosed with UIP, Usual Interstitial Pneumonitis, on March 7th. Upon further discussion of the seriousness of my condition, late stage IPF/, UIP, a treatment plan involving subcutaneous Gamma Interferon 1 B (icc 3x’s/wk), and low dose Prednisone (10 mg/day) was started. This treatment, as deemed experimental, isn’t covered under the insurance plan I have. The price of this medication ranges from $2000 for a 12-vial package a two-week supply to $4800 for the same amount. Price shop online and on the phone, in person. .however! The markup on medications is amazing. The treatment is going well. I’ll be more specific in the medical reports section for actual numbers.

 

I then was scheduled to have an additional opinion at National Jewish to review all my records, films, CT’s, X-rays, tissue samples, slides. It was discussed to have 02 prescribed, exercise (at least 4 days per week of aerobics with weights also). So, I started exercising. Initially I couldn’t go far. I followed the recommendations cited in Dr. Weil’s books, “Spontaneous Healing”, and “8 Weeks To Optimum Health”. Initially I was able to walk two and a half minutes out and the same time back. I was carrying two Type E oxygen (02)   tanks in my mountaineering pack. The tanks strapped in beautifully. The design of the pack made it quite comfortable to carry this 50 pound load around. I am accustomed to training for peak assaults, summiting tall mountains (14,000+ foot peaks) with my pack weighted down with eighty pounds of sand in zip lock freezer bags. This was now quite an adjustment from the 3 mph clip with the pack, prior to my condition. I would encounter serious stabbing pains when my 02 saturation (SAT’s) would drop. Typically I would first feel the tension in my diaphragm, cough, and feel the hot ‘ice pick like’ pain in my right calf. This would necessitate slipping off the pack to adjust the flow rate. When changing elevation, rate and pace of walking, basically any stressor as a result of a change of rhythm, these pains and symptoms are present. Not the most sensible, practical, efficient way to maintain one’s heart rate and oxygen diffusion. Presently I can gauge my 02 1pm flow rate by monitoring the pulse oximeter at the rehab gym and at home. I am ‘discussing’ /appealing to secure a portable pulseoximeter as the large block, is not conducive to any normal outdoor exercise. ,In addition to the pulse oximeter the new HELlOS LOX (Liquid Oxygen), weighing in a 3.2 pounds, strapped on your side in a fanny pack arrangement with easily accessible flow rate controls while you’re on the go is also on the table for securement. The prescription has been scripted but initially DENIED as it is deemed” Hygiene or self-help Items or equipment, or items, or equipment that are primarily for comfort or convenience are not covered.” Interesting how specific devices, ‘equipment’ might make me healthier are DENIED as being healthy and . . . .....I eventually worked up to seven miles per day with this arrangement of the steel tanks. The challenge this created sparked the introduction of the LOX (Liquid Oxygen) in the delivery through the Care Stroller. This eight pound wonder lightened the load but still hasn’t addressed the PITA (Pain In the Ass) factor of adjusting the 1pm flow rate. The present arrangement still compromises my former life style of outdoor activity.

I’ll address exercise next. 

EXERCISE—It does a body good! Your body never gets mad.... it gets even. 

GOYFAADIN— pronounced: “GOY FAA DIN”. This isn’t a kosher dish or an exotic entree. It’s my acronomyn for:

Get Off Your Fat Ass And Do It Now!! Exercise is paramount in treatment. Physically, psychologically, physiologically Push through the depression. Don’t be seduced by this easy and attractive siren of sedentary soft coach potato Barbie. Remember….no one said life would be fair, easy or nice. Life is hard. Take control of what you can. Your attitude is essential!! Positive mental attitude is key. I used to teach the 6 P’s: Prompt, Prepared, Polite, Positive Mental Attitude, Participate and Produce. I’ve discovered that these with two large P’s might capture what “IT’S” all about. Perception and Priority. As we view things, perception aids in our determination of reactions. This leads us to priority. How valuable is this to us? Does it make our Top 10 list? Top 3 List? Does it even make our ‘list”? Is it our list? Are we at a place in understanding yourself to determine who’s list it is? Pace yourself!! I’ve overdone and in the process scared my family unnecessarily. I have heard horror/war stories of others. Moderation is the key. Things are different now. You aren’t the person you were. Realize that the past is just that. NOW is what you have to contend with.

Some of my early exercise routine was cited above. When as I was provided with the LOX system, I discovered, through an “AHA!!” that maintaining an even rhythm, pace, heart rate and breathing is critical in my exercise plan. I have a high pain threshold but don’t go out looking for more! So I surmised that by employing a treadmill, recumbent bike, I could do the following: 1. Eliminate carrying the LOX as I could place it on the floor (requiring the seven foot Cannula vs the standard four foot one), 2.Adjust the 1pm flow rate as necessary!! without stopping, and, 3.1 monitor my pulse and SAT’s comfortably. I presently work out 5-6 days per week. My sessions look like this: Monday, Wed., Fri., Sat. at the local YMCA. I usually arrive about 6:20 and work out until 8:15-8:30. I start out my a slow stretch while switching from standard Cannula to a pendant style cannula which allows me more 02. (See equipment section for specific info). My workouts at the YMCA look like this:

I come in, change out my cannulas. Go over to either the recumbent bike or treadmill and get going. I typically go for 50-60 minutes. On the recumbent bike (it’s a Tectrix) I set the resistance in the fat burner range of 5 and get going. This bike is a sweet machine. I can maintain the same RPMS, check my HR. I have tried using my Oximeter but it’s quite awkward with all the high traffic around the club. So, I monitor my SAt’s by pain. I’m still appealing the insurance carriers denial for a sports/portable pulseoximeter. After the transplant, one is required and covered for rehab--not pre-surgery. Following the bike, I then go over to two CYBEX units and do 6 sets (3 standard/ 3 advanced) on the following machines (Dual Axis Chest Press, Dual Axis Pull Down) working these muscle groups... pectoralis major,anterior deltoid, triceps, lattissimus dorsi, teres major, biceps, lower trapezious, brachioradialis). I then do 3 sets of 15 lbs dumbbells doing bent over rowing, and 3 sets of 15 lbs doing shoulder presses. I finish up with 3 sets of SUPERMAN stretches (laying on a mat stretched out like SUPERMAN! These really work those intercostals. WOW! The first time I did them did I ever feel it!! After these, then I do 3 sets of leg lift/sit up crunchie type exercise. I am unable to do regular sit-ups as the action acts like a bellows forcing what air I have right out! Not a good plan!! I cool down while gathering my water bottle, change out my cannula, and head out.

My Tuesday/Thursday sessions at the rehab go like this: First we all gather in a circle and chat while our blood pressure is being taken and recorded . Then we begin doing slow stretches (upper body/lower body). Topics of conversation range from A-Z. How people are feeling, is it an off day, good day, so-so day. Flow rate control for 02 discussions kick in right before folks go to the exercise area they’re starting out. The equipment options are: Recumbent bike (1), rowing machine (2), treadmill (6), weight machines (2), stationary bikes (3), free weights (lots), stretch bands (lots). I usually go to the recumbent bike where I settle in for 30 to 60 minutes. Depending upon the number of people working out, I may hook up 02 directly to the wall or use a portable and then I set my 02 flow at Slpm (which I may have set up to 8 1pm) after about 20 minutes into the session, set the machine at Level 5/6 and start in. I maintain an even pace so my breathing is rhythmic. I’ve found that I must keep an even pace or I have to adjust the flow rate to accommodate the additional stress as a result of the change. During this session we monitor our SAt’s (02 Saturation/diffusion). At the start, we give our beginning numbers (e.g. 97/97--would mean 97% 02 and 97 HR Heart Rate). Then it’s off to the races!! I like to maintain about a 140 HR during my sessions on the recumbent or on the treadmill. I keep water handy and sip about a litre during each session. When I break 145-150 HR, my SAt’s drop like a stone in a pond. That’s when I ask for the 02 to be cranked up a couple 1pm. I recover and get back at it. I’ve gotten to know my body so well, that I’ve can recognize when I’ve dropped 1% 02 before it registers on the pulseoximeter. Following the recumbent bike, I’ll go over to the weight machine and do 3 sets of 12 repetitions of the following : pull downs in front of my face --to stretch the lattisimuss dorsi, intercostals, then pull downs at rear ( behind the head) working the triceps.

Equipment used:

Pulse oximeters we use in lab: Masimo, Ohmeda

Treadmills:      Quinton Q5o, 055, MedGraphics Trackmaster TM31O,

Recumbent bike: HRT 2000R Preference

Weight machines: Biodex

Exercise bikes: Schwinn AirDynes, Monark 

 

Medical:     Could be bor---ring section for some--- exciting and enlightening for other’s!

Procedures/Testing that I have experienced: Standard full physical, broncoscopy, lavage, thoroscopy, MRI’s, CT Scans, CT Contrasts, X-Rays, Barium enemas, Cardiac Catherization, Vascular testing, Pulmonary Function Tests (PFT’s), Treadmill Tests, Colonoscopy, Sigmoidoscopy, Echocardiograph, Blood draws-MUGA--multiple Gated Blood Pool Scanning, DEXA bone density, Abdominal Ultrasound, Noninvasive Vascular Studies, and Kidney Functions.

What a fascinating temple our bodies are! It’s so sad that it takes a crisis to recognize how beautiful we are. This disease has given me the opportunity to really appreciate and honor my body by eating right, exercising and getting things balanced.

Originally I was going to insert charts and graphs of my PFT’s (Pulmonary Functions Tests), but I’ve decided not to do so at this time. I’m dealing with lots of numbers and statistics at work and shouldn’t subject you to raw data. I’m functioning on about 50% lung capacity. My typical resting, non-stressed 02 flow is about 2.5 1pm. When stressed, on the phone, walking about, chores--I’ll up it to 4 1pm. Exercising it’ll go progressively to 8 +lpm (litres per minute). On a rough day I’ve been up to 12 1pm. Each day is different how I feel. The toughest is pushing through the morning depression and ‘gettin’ on with it!” It’d be so easy to lay back down, become chronically/ clinically depressed and stay locked into one or more stages of grief. That’s not an option!! Get on living!!

Remember, If you don’t know—ASK!!! It’s your body someone’s about to do something to!! It’s such a steep learning curve. I so often don’t have enough information to intelligently ask any questions. It’s after the session with whomever and they’ve gone that it dawns on me or my wife….Why didn’t we ask??? Whatever! Write it down and call ‘em up! Been there!! Be persistent!