I started this blog in what seems another lifetime. Illness has a way of grabbing and turning your life upside down. I was rummaging in some files yesterday and ran across something I had written a while back when my husband got ill and my focus shifted. I'm sharing now:
I began writing the beginning of August to record our journey through Ron's medical issues, partly just to vent and to try to be more objective as to what he is dealing with. Some days I don't know whether to laugh or throw a huge temper tantrum. We are both on a huge learning curve. I sometimes think that there ought to be a Life Class offered to better prepare us for this stage of our life....at this point point we don't and are learning and coping on a daily basis.... it is what it is.
Ron began seriously losing his vision before Thanksgiving of last year and by Christmas he had pretty much gone blind. He'd been having regular checkups since February 2011's surgery for Glaucoma and followup surgeries to repair complications in January of 2012 and the beginning of March 2012. Despite his surgeon's efforts his pressures remained high and lost most of his remaining vision around Thanksgiving 2012 with various drug therapies were instituted in leiu of more invasive procedures. The damage to his cornea left him with severely restricted vision. He stated it is like looking through a window that is streaming water as if in a rain. He cannot clearly see images, just impressions of shapes and blurred colors. Lights and darks. His doctor has classified him as Legally Blind. The State was notified of his impairment and they revoked his driver's license and he was issued a state ID card. He was not a happy camper and really felt emasculated.
The damage to his “good” eye came from the mechanical shunt they placed behind the eye itself to relieve the pressure from glaucoma as the laser and internal drain had failed and he was in danger of having a retinal detachment from the elevated pressure within the eye. (As a note: He lost the vision in his right eye in 1972 as the aftermath to a head injury incurred during an automobile accident.) After consultation with a corneal specialist it was decided that he may benefit from a partial corneal transplant that may restore some of his vision. We were very hopeful that would happen and scheduled the procedure at the end of March, 2013.
And so we went on. Putting one foot in front of the other. In January, 2014 of this year, I was able to work thru Social Services and Division of the Blind to obtain some remedial services and counseling for him on a limited basis to help give him some quality of life and to make things easier to get around. I really felt that he needed to maintain as much independence as he could. Because of neurological damage from his previous cardiac event and stroke he was unable to get training in use of the sight cane. His fall risk was just too great.
We did enroll for Books for the Blind service from the Library of Congress. They sent a digital player and the library in Raleigh sends the books directly to the house. Surprisingly they have a good selection of material available. Also, the public library here has a pretty good selection of “talking books” on CD's. I felt it was best to prepare the groundwork at that point in time by being proactive in identifying resources and services for him rather than having to wait and set things in motion at a later date if he needed them more quickly. Although his eye doc recommended the transplant, he was also very realistic in his presentation of the risks and possible failure of the procedure. He was also in agreement with getting all our ducks in a row. We were working with the premise of getting some vision back, but being prepared for the possibility that the transplant would not work and his vision loss would be a permanent disability.
I was also hopeful that he could ride the ICPTA bus independently and go to the Senior Center; however, I was informed that the Senior Center doesn't quote “babysit” unquote. I was stunned that they would even say that. Our objective was to have independence. It really ticked him off and I have been unable to get him to move on that. I felt that the employee there was totally out of line. So, instead of using the equipment there, we got involved with the Mall Walkers, walking along the waterfront, or going around the block.
We continued with regular checkups to monitor his eye and to his relief his pressure remained normal. It is such a pity that he cannot see as the pressure that was threatening his optic nerve has been alleviated. Now if his cornea would just heal, but that seemed to be less and less likely.
It's a little strange in how much I am dependent upon his lack of independence. I feel like I am tethered by an invisible rubber band and my movements and activities only mirror and bounce around reacting to his. My role has been modified by degrees to not only being his eyes, but also by being a taxi driver, executive chef and personal assistant. I find that it is difficult to balance his needs with mine and sometimes I feel as if I am lost somewhere in the middle, but then I feel a bit guilty because I know how difficult a time he is having especially when he voices his anger and frustration at his helplessness. I have tried to be upbeat and positive, but it has been an uphill battle somedays being sunshine and lollipops. I think some days my feelings eclipse his. Anger. Frustration. Grief. The whole gamut of emotions. It's just so hard seeing such a strong and vibrant personality being reduced bit by bit into a shadow of himself. I am so grateful for the days when he is up and more like the “old” himself.
March 23, 2013. A dire day in the grand scheme of all grand schemes. Let's take one for the Gipper. Not! That day I learned that I am so unprepared for this stage of life, but that of the half of the whole that is my life at the moment, I can survive. Ronman had a heart attack while sitting on a patient bed (cart) while at Urgent Care getting checked out for a possible separated shoulder; as he had tripped on a curb and fallen a few days before and had been fussing about the pain. I feel a bit guilty as I had thought that he was just being a bit whining and had blown him off. Unknown to everyone was that the shoulder pain that was also radiating down his arm was masking the symptoms of a heart attack. The doctor had just stepped out of the room to make arrangements for an x-ray to be done, during which time eyes rolled back in the head, profuse and copious amount of sweat and what was seen as mild seizing occurred. I didn't panic and calmly interrupted the doctor and his nurse in the next room telling them in a whisper that I thought my husband was having a heart attack. I let them go into panic mode. An ambulance was summoned and in the ensuing days and weeks, he/we went on to have a multiplicity of catheterizations and three stents placed in his already damaged heart. I say “we” as when he became a patient my role became spokesperson/caregiver and somewhere way down the line.... wife. Two of his six bypasses he received in 95 are no longer functioning, but the good news is that although they are blocked his body has actually created it's own little network of vessels to still carry blood to his heart tissue. Except for the one known as the “Widow Maker”. I'll discuss that little news item a bit later.
Round 1: Grade received was an Epic Failure (F).
I had been hanging around the Emergency Room while he was attached to all kinds of gizmos with assorted bells and whistles. There was some comfort in the occasional nurse who popped in after the initial set-up, to silence a blaring alarm or klaxon. A heart cath was scheduled for the following morning and although wheelies were not performed in the hall, the sluggish ride up the elevator, set my teeth on edge. Hurry was not an option on pushing the UP button to room 504. The two nurses in charge of his gurney spent the time cracking jokes. The tension level had definitely eased from tense to calm and the only thing on his mind was food. Now. Sad thing was that supper had already been served and a nuked offering was available, but oops it was after 8 and cath procedure scheduled for the following morning meant no food or drink. Darn. There was to be no joy in Mudville.
I left and went home to return early the next morning to an empty room. I wasn't particularly concerned as the nurse at the nursing station had smiled as I passed upon exiting the elevator. By my estimation he'd been in the cath lab at that point for about 20 minutes. So I pulled up a chair and settled in for a wait. And wait. Around 11 a nurse came in and started gathering up items and putting them into a bag. Great! Gonna go home. So wrong I was. A tech came down and said, “He's gotta go North”. He failed the initial cath.
Of course the little hospital here did not have the resources or personnel to handle this type of emergency and an ambulance was dispatched promptly after a short but intense debate as to whether it would be by helicopter or vehicle. Ground ambulance won out and efficiently carried him to a hospital that could handle the procedure needed. I put on my big girl panties taking charge on my end, put the dog in the kennel, made sure the cats would survive for a few days, gassed up the car and broke at least a dozen laws in trying to find my way to the hospital in Virginia they sent him to. I did not beat the ambulance, but did beat him to the CCU by three minutes. I detest city driving. Amateurs.
Round 2. Heart Cath was successful. A double stent job was done. I spent the procedure in the waiting area sending all kinds of good thoughts and promises to the health care gods to be all the things I woulda coulda shoulda be and done so much better. Hugs, kisses and promises, but no begging. What is, is what is. He needed a ton of extra good thoughts and prayers.
Two stents butted end to end were deemed a success and within 24 hours patient was released to go home. Of course my definition of home ready and the managed health care definition of home ready are diametrically opposed. In husband's opinion, yesterday being not soon enough was happening; where watching TV from the confines of his big red easy chair would have been more appropriate. Only the fact of elevated enzymes that indicated heart damage motivated a bit of a lifestyle change. Patient rep came prior to dismissal and orders were set for voc and cardiac rehab.
Voc Rehab to strengthen muscles needed for balance and prevent fall. High risk for Falls. He should have it stamped on his forehead. Finally accepted the fact that a walking cane as an aid is more appropriate than wife's arm and shoulder for support. Since he is legally blind, he cannot receive white cane work until the issue with his balance is resolved. Spent time with Blind Services discussing options.
Vocational Rehab concerns me greatly. He is still fragile. Ashy complexion. Easily tired. Easily winded. They push him hard, but allow for several breaks in the hour he is there. It's for six weeks and everyone seems to think he is doing fine. I am uneasy and concerned. They do not heart monitor at the facility. I guess I should be relieved that the door to the Emergency Room is only three blocks away. It is two days a week.
Cardiac Rehab is very regimented. Best thing is that there is a separate elevator that delivers directly outside the ER. Couldn't get any better for immediate emergency care if you have to “fall out”. All participants are monitored and he has a personal aide working with him. I wait with the other caregivers in the waiting lounge and we exchange war stories and get to know each other. Every Wednesday is a little class and so far we've done diet, exercise, medications and heart disease. General info. He seems to be progressing, but still tires easily and his blood pressure is a problem as they have to elevate his feet periodically to bring it up. 100/60.....96/61......78/46... I am concerned. His color seems more and more off.
We are running ourselves a bit nuts. Rehab takes up a huge chunk of time five days a week. We are up at the crack of dawn. Feed the animals. Get breakfast and out the door. Major lifestyle changes. All food is measured, weighed, recorded and tracked. A pill here, two there, is this taken now or later? With or without food? It has been determined that he is a borderline diabetic? Is this like kinda being pregnant? You are or you aren't? We test every morning for Blood Sugar and keep track. Once a day testing. No insulin needed as of yet. Just modifying diet. It is a major headache trying to keep track, but have found an online/app that takes a lot of the guesswork out. Major like.
With this cardiac event, he has also gotten a new doctor. I do like the fact that his cardiologist is well liked and respected in this area and is good. He works also in conjunction with the doctor that performed the stent procedure. All I know is that man did good in placing a stent in an old bypass that was in very difficult area of the heart. A challenge, but not insurmountable. I did learn that the bypass graft that was giving him problems was one of the first done at the naval hospital 20 years back and is now considered routine procedure.
Have I mentioned that I am beyond thankful for the powers that be that he received immediate care initially, as he was sitting in a doctor's office when this event occurred. It is beyond a eerie feeling to be passed on the road by a speeding ambulance with lights flashing and sirens blaring, knowing who is on board and feeling totally helpless. I am beginning to be an expert on prayer on the fly by.
Recovery period. Sounds dicey. It is. This isn't as nerve wracking as when he had his bypass surgery in '95, or the subsequent stroke. Coping with all the changes again is. Not that he has ever fully recovered from those. This time tho, there are vast improvements in what resources are available. Amazing what almost 20 years does. Makes me want to throw a tantrum and scream out Where Were You People when we needed these resources? Instead of telling us to go away, it's what can we do to help? I am cautious and suspicious. There has to be a catch. Ah.... there is! There is! There is someone in the household that is able bodied. Pat pat pat on the head. We are so screwed. As usual it is the “healthy” spouse that takes up all the slack. I feel like I am Tantalus. Everything that would really give assistance is always just out of reach. I have learned to take 'we'll get back to you' in stride and have developed some “end run” techniques.
Through his cardiologist he is eligible for one of three clinical trials and is chosen for Odyssey based on his cardiac history and current medications. It is being supervised by Duke University in the US and is also being offered in Europe. We do not know if he is receiving the placebo or the actual drug. We hope the actual drug as it is an inject-able cholesterol buster. The study will last from 2-5 years, which gives him a bit of a mental boost. Seeing that he has a future is very important at this stage. Not to mention his health/heart is under constant monitoring. He is to be seen every two weeks with bloodwork and cardiac monitoring to be done under the auspices of the study.
After training I am to give him the drug injections from a kit that I receive and store in the frig. Funky looking inject-able pen. Click and it auto delivers a dose. Kewl beans. Not so “kewl” is the Bio-Hazard Box labeled for Regulated Medical Waste for spent syringes and cartridges that has taken up residence on the kitchen counter next to the stove. It definitely does not go with my Mediterranean décor, but then again neither does the sea foam green counter tops left over from the 70's.
Along with the rehab came the dreaded word: Diet. Surprisingly he is more receptive to dietary changes and quite frankly, I am much better prepared with all those resources now at my fingertips that were unavailable before the internet. It is so much easier to pull up info on the web, than gleaning information from phamphlets, or other handouts swiped from doctor's office; not to mention those endless trips to the library. Thank the dietary gods for discussion groups from those who have been there and done that.
Thankfully, there have not been a whole lot of major changes for his diet as we had been eating semi-healthy for ages. We haven't had a salt shaker for over 15 years and I think that salt canister in the upper cabinet top shelf, I have had since 2002. I do use kosher salt in baking, but either take salt out of recipes or limit the amount. Have you seen the amount of salt in commercial food products? I am the one that has ankles that swell like a poison puff balls. The biggest dietary change is portion size. I now measure everything. Plus I threatened to put his elbow in a cast. If he can't bend it, it won't deliver past the lips. He has been steadily losing weight, about 20, since March.
The fallout from this episode manifested itself in ways that he still had to deal with. A dental appointment had been scheduled that consisted of a routine teeth cleaning added to the learning curve. We were informed by the dental hygienist that he would have to wait six months after a cardiac event before they would clean his teeth. It seems that the heart is susceptible to infections from the mouth. Not good. The same with the scheduled eye surgery. Not gonna happen for another six months.
Round 3. Just when I started getting comfortable. Never get comfortable.
We had finally settled into a routine with rehab! He had done so well with physical therapy for his shoulder and balance issues and finished the program on a Friday! We were both looking forward to having a day, or two, that would be uninterrupted.
But that wasn't to be---
Shortly after I wrote the above, Ron suffered a second, then third and then a fourth cardiac event over the past year; with the latter having him life flighted to Virginia to a heart trauma team there.
Every evening I say a little prayer of thanks that the day went well. Give me one more day....Amen
