Failure Isn’t Final And The Pain is Gone!

It’s been over 2 months since I published a post to this blog, so I’m sorry not to be more communicative. All during that time, I kept hoping to be able to deliver better news about Don’s health and to say his pain had decreased or at least was being managed better. During that time period, here’s a quick rundown of the significant events in his medical condition. (Note: If you’re not interested in this blow-by-blow review, just skip to the bottom.)

June 13, 2016 Dr. Patel, anesthesiologist and pain specialist, consultation

June 16, 2016 Radiology Ltd – screen for L-8/10 spinal problems to clear for anesthesiology

June 23, 2016 Dr. Patel, anesthesiology procedure (nerve block) #1

July 1, 2016 Dr. Patel, anesthesiology procedure (nerve block) #2

July 22, 2016 Dr. Patel follow-up, referral to Dr. Olson for umbilical hernia

August 1, 2016 Dr. Olson, consult re umbilical hernia, referral to Dr. Robertson (PCP) and Dr. Gonzales, cardiologist, re warfarin use

August 3, 2016 ER Benson Hospital, legs swollen and belly pain, transported to St. Mary's Hospital for evaluation, diagnosis congestive heart failure, IV of Lasix to reduce swelling

August 4, 2016 Echocardiogram, St. Mary's Hospital, discharged

August 7, 2016 ER Benson Hospital, chest pain, kept overnight for observation

August 16, 2016 PET scan, Dr. Gonzales office, Sierra Vista

August 17, 2016 Umbilical hernia surgery, Dr. Olson, NW Hospital, Tucson

Finally, one week after surgery, Don is feeling none of the type of belly pain he has suffered from for over a year! It could take another week or so to completely recover from the surgery, but we are so thrilled to reach this point.

I’ve lost count of how many doctors noticed his hernia, even poked it to see if it hurt, and failed to pursue doing anything about it. The pain was so severe and covered such a large part of Don’s belly, he couldn’t tell that the source was the hernia, even when it was being poked and prodded.

As for the congestive heart failure, according to Medline Plus, “Heart failure is a condition in which the heart can't pump enough blood to meet the body's needs. Heart failure does not mean that your heart has stopped or is about to stop working. It means that your heart is not able to pump blood the way it should.”

The condition is treatable, with close monitoring and the right kind of meds, diet and exercise. I was surprised to read that 6 million Americans are living with heart failure, especially since the cause of my late husband Bill McKay’s death was congestive heart failure. So the good news is that failure isn’t final – maybe there should be different terminology for the condition.

For the past 16 months, our lives have certainly been different than what we prefer. We have only been out of Arizona briefly during that time, and have missed so much the RV traveling lifestyle that we love. We look forward to getting back on the road for at least some short trips as soon as the follow-up doctor visits are complete.

Meanwhile, Don has started to do more small projects around our motorhome and RV lot. We’re both getting more exercise by walking our sweet dog Gigi, and he’s maintaining his 80+ pounds weight loss. (Now I need to work on my own weight!)

Thanks for all the thoughts, prayers and support from our friends and family during this time. We have become closer to each other and all who commiserated with us, and we are excited to put all the doctor visits, pain meds and hospital stays behind us and begin some new adventures!

Early Monsoon and Health Status

Officially, Arizona’s monsoon season begins on June 15 this year, and the Governor has proclaimed next week as Monsoon Awareness Week. However, it seems an early monsoon storm arrived today, June 11. I didn’t get any pictures during the heaviest part of the storm, mostly because the Magne Shades were soaked and I couldn’t see out the motorhome windows! One shade even blew off when the wind caught the edge just right.

After the worst of the wind and rain subsided, we went outside to assess any damage. Don washed the downed shade.

He looked out back to see the wash turned into a river.

He noticed a family of quail (mom and 3 babies) scurrying away and I was barely able to get this shot.

We found out where the low spots are on our lot.

When I looked out to the street, I could see the Little Green Man had succumbed to the wind.

Gigi was first to arrive on the scene, and was about to give mouth-to-mouth. But the flag was the only thing that got immersed in water flowing down the street. What looked like a possible drowning was only a stumble and fall.

I was able to set him upright and anchor him again with tent stakes, but the ground was soaked and the stakes feel loose.

A few minutes later the sky was full of puffy white clouds against a blue background and the sun was shining.

We appreciate all the concern expressed by friends and family during the past several months as we have fought to find the source of Don’s severe burning abdomen pain. Every test and procedure imaginable has been conducted by multiple doctors, and we still can’t discover the cause. He even swallowed a tiny camera in a capsule and for 8 hours wore a sensor belt and a small computer to record the thousands of pictures. We returned the belt and computer at the end of the day but haven’t yet learned the results. (No, we didn’t have to return the capsule!!!)

On Monday (June 13, our anniversary) Don has an appointment with an anesthesiologist who’s also a pain specialist. We’re hoping he can isolate the nerve(s) that are sending pain messages to the brain and do something to interrupt or squelch the signals. It seems a logical step, to treat the symptoms instead of the source, and we’re putting a lot of hope on that possible outcome.

Don’s final appointment with the kidney doc is scheduled for June 21. Provided all goes well then, and provided his pain is being managed better, we want to start our wheels moving on June 22. It’s still our plan to attend the Escapade in Vermont in July. After spending 16 months in Arizona, our case of “hitch itch” really needs to be scratched!

Friends, More Friends, and Still More Friends

While Don continues to struggle to balance his meds with his pain level, we have enjoyed visiting with more friends.

Diane & Andy Hitzel came over for a visit yesterday morning, along with Gloria & Frank King. We had a nice chat sitting on our patio and it was a great chance to catch up. Unfortunately the photographer (yours truly) wasn’t on the ball and didn’t get a picture.

Later in the afternoon, our long-time friends Geoff & Nancy Justiss came over for happy hour.

Gigi made a new friend, spending the whole time with Nancy petting and cuddling with her.

Today, after a morning rehab session for Don and a chiropractor session for me, we went to Jil & Tom Mohr’s place at the Escapees RV park in Benson for a gathering. Geoff & Nancy have been parked next to them for a few days, and are leaving tomorrow. Jil’s garden is lovely.

There’s a unique ocotillo nearby, with a single branch splitting into several more at a very high level, where most ocotillos branch out from ground level.

The blossoms look healthy and are a vivid shade of orange (or is that red?).

We met Tom’s college roommate Henry, visiting from New York.

Most of the others were people we know or think we have probably met at some point in the past. Here are Rita and Ann.

Geoff & Nancy.

Mike & Beth.

Mick.

Rita & Jil.

Jane.

Tom & (sorry, didn’t remember his name).

I love Nancy’s wine glass. The levels are for Typical day, Rough day and Don’t even ask!

It was a fun time and we enjoyed seeing everyone. Thanks for hosting, Jil and Tom!

Enjoying Benson Neighbors and Friends

Don and I have really enjoyed being back on our lot in Cochise Terrace RV Resort for the past month. Today was a beautiful, slow-paced day with lots of time to visit with neighbors, take naps, plan the next week and share a meal with our friends Gloria and Frank King. The weather was perfect, warm enough to sit outside and no wind to spoil anything.

They provided the ribs and dessert, Don smoked the meat in his Orion cooker, and I made a red potato salad. We’ve had the Orion for several years, but we still marvel at the way it cooks. Don hung the ribs on racks, put on the lid, added match light charcoal, lit the fire and waited an hour and 10 minutes.

The result, yummy, juicy, tender baby back ribs, better than any you can get in a restaurant IMHO.

Yep, they practically fall off the bone!

Gloria’s dessert was yummy and almost sugar-free – fresh strawberry cheesecake!

And Gigi got lots of attention, dividing her time between my lap and Gloria’s.

The coming week will be a full one, with doctor appointments and other projects. But we’re so happy we don’t have to spend 4+ hours doing dialysis 4 days every week! Life Is Good!

The Bad News, The Good News, and The BEST News!!

First, the bad news. Don’s abdominal pain increased to a level that was almost unbearable last Monday. So, after our monthly visit with the home dialysis care team at the Fresenius East Center, we headed for St. Mary’s Hospital and checked him into the Emergency Room. Don’s primary care physician (PCP) Dr. Robertson in Benson had suggested that he get checked for mesenteric ischemia, as noted in my last blog post. The ER doc agreed to order the angiogram (CTA with contrast) and keep Don in the hospital overnight.

On Tuesday morning, in prep for the angiogram Don’s nurse was delivering an FFP (fresh frozen plasma) because he has been taking warfarin. Just as I walked into his room, he had a reaction to the FFP, with his blood pressure hitting 210/120 and he was sweating profusely and shaking uncontrollably. Two nurses, two techs and the doctor were trying to take care of him when it was decided to transfer him to the ICU. I followed them and it didn’t take long for the ICU crew to stabilize him. The procedure was rescheduled for Wednesday morning.

Long story short, a multitude of tests were conducted during the next several days, and all of them turned up negative, leaving the cause of Don’s pain a mystery. It was discovered that he has Barrett’s Esophagus, and possibly a small stone in his gall bladder. Neither of these could be causing the pain.

That’s the good news. Don has no cancer, no polyps, no growths or abnormalities. His innards have been scanned from top down and bottom up, scoped, and examined every way imaginable. His body seems to be doing well. However, the pain persists.

Today Don and I met with a nurse practitioner who specializes in pain management. She is working to reach a level where Don can tolerate his pain since the source can’t be found. The doctor on duty this week isn’t as interested in finding the source of the pain as last week’s doc, and wanted to discharge him today. Don knew he had the right to appeal the discharge, which he did, and will be able to stay another day or so to work with the NP.

Now for the BEST news. Two phrenologists (kidney docs) have reviewed Don’s creatinine and GFR and have concluded that his kidneys have rebounded to a level where he doesn’t need dialysis! WOW! Prayers answered! After 9 months we understand that it’s very rare for kidneys to recover, but we’re so happy Don’s are in that small minority!

When we first learned yesterday that this might be the case, we both hoped against hope that it would prove true. Now that we have definitive results and advice, we became absolutely giddy in our joy! Time to celebrate! We’ll still watch his kidney function with frequent tests and continue to have him monitored by a phrenologist, but we no longer have to perform dialysis! HURRAY!!!

I have no pictures from this week, so here’s a happy selfie of me and Gigi.

Welcome Back Friends

My last blog was 2 weeks ago (time flies!) so I need to give everyone an update. We’ve been following our dialysis program and getting better at preventing alarms and cautions from the equipment, as well as preventing any extra bleeding or other challenging situations. In fact, the session we did yesterday (Friday) went perfectly!

Don continues to suffer from undiagnosed abdominal pain, which has progressed to an almost unbearable level. He saw his primary care provider (PCP) on Thursday, and the doc ordered an angiogram to check for mesenteric ischemia. If you’re interested in knowing more about the condition, just Google it and you’ll be busy for the next hour or so. We’re hoping this diagnosis proves positive, because it can be treated right away and Don can start feeling normal again. The scan will take place on Tuesday.

We’ve been enjoying the company of not only Gloria and Frank King, who have become our neighbors in Cochise Terrace Resort, but also Jan and Bill Mains, who came for a several day visit. Here are pictures from some of our gatherings.

Ron and Mary Lichtenberg joined us for happy hour yesterday afternoon at Jan and Bill’s site.

Gloria thought it was too cold to sit outside when the shade reached her as the sun went down.

So Jan gave her a blanket!

Tonight Gloria and Frank hosted dinner at their place, as a belated “welcome home” for our return to Benson. They had planned to do this 2 weeks ago, but Gloria was very sick with the flu. Then Don wasn’t feeling well for awhile. So we finally got to have the party, and all the food was wonderful! Thanks, Gloria and Frank!

Sorry I didn’t get pictures of the food, but here are some of people, pets and valley/mountain views.

It’s good to be “home” again!