Catching up

Wow, time really does fly. I was reminded that I have not been updating the blog when someone emailed to ask if Doug was okay. Yes, he is! Sorry for the lack of information; I will try to do better.

We went to Denver to RMCC April 13 for Doug's one year checkup with Jeff Matous M.D. Jeff (yes he is very okay with being called by his first name) is an amazing guy. He is always enthusiastic, very well informed and upbeat, ready to answer any questions. All doctors should all be like this, right? Unfortunately they aren't as you all probably know. Jeff told us he was leaving soon for Italy where he would take part in a big bike race.

Doug had had blood taken for various tests the week before, so Dr. Jeff had the results. The titers showed that Doug still has immunity on most diseases, so he doesn't need any re-vaccinations except the yearly flu. I was pleasantly surprised on that. His CBC and Chem was good.

 Bone density shows osteopenia (precursor to osteoporosis). He is still on monthly Zometa, the biophosphonate bone strengthener -- August will be the last infusion of Zometa. Studies show that the efficacy drops sharply after two years, and the risk of necrosis of the jaw (with dental work) means stopping is the best thing. Stopping Zometa will be good for Doug's kidneys too. Right now we are told his kidney function is "adequate". I hope his bone strength holds.

Doug's blood shows no sign of MM -- whew. Jeff told us that new studies show improved disease-free survival after SCT if the patient is put on maintenance therapy immediately after SCT. At the time of Doug's SCT that information was not out yet, so Doug is not on any drugs except the Zometa. Jeff said he does not want to start maintenance chemo now. He did tell us about two new drugs that will be available if/when Doug relapses. Pomatidromide is "the new Revlimid" and Carfilzomib is "the new Velcade" and does not result in the dreaded neuropathy.

So for now Doug continues seeing Dr. Adam Myers in nearby Salida every three months for the "MM panel" blood work.

We have been enjoying our wonderful summer weather here in Buena Vista. When the day is sunny it feels hot (with very low humidity so not 'sticky') but if you go in the shade it feels quite nice. Evidently bugs do not like our high altitude; we have a few flies but almost no mosquitoes. It is very pleasant to sit outside in the evening - we haven't even used bug spray. Most nights we sleep under a light blanket.

I'm posting a photo of us taken a couple of weeks ago. The yellow climbing rose is in our back yard; the green house is our neighbor's. Life is good -- we hope all of you are good also.

One year after the big crisis. HAPPY EASTER

Last year on April 4, Doug's heart stopped beating and he went to the ICU and on a ventilator. That was a harrowing time for sure. A year later we have nothing but good news to report. Doug is doing great; he has made a wonderful recovery from the pancreatitis. His eating habits have changed for the better -- no more fatty junk food -- and his attitude is great too.

 On April 13, we go to Denver to see Dr. Mattous, Doug's transplant doc, for the one year post transplant check-up. Doug has already had the requisite blood tests, x-rays, etc. We expect a good report.

Tomorrow is Easter and we will be with our son and extended family in Denver. Life is good!

Father God, on this Easter, help us all to have a joyous heart and a thankful spirit. We praise you for the abundance of your gifts.

I am posting a photo of our beautiful Mt. Princeton. We drove 5 minutes from our house to take it. I love the snow on the mountain tops, but am glad that the "town snow" has melted.

Love to all.

Out of hospital, doing well

Doug is out of the hospital and "home" in the camper. The doctor said it was a mild case of pancreatitis and thankfully he had no complications. Doug progressed quickly from not being able to eat at all, to a clear liquid diet, a bland diet, then to a low- fat diet.
The doctor said she has no idea what caused it. Idiopathic is the medical term for unknown cause.
He got out Sunday, has been resting up and we plan to leave Hondo TX for our house in Colorado tomorrow.  We already have an appointment for follow up with our local primary care.

Doug will need to follow a low fat diet, so I have really been looking at labels. The hospital gave us no dietary guidelines (we were less than happy on several accounts with that hospital) -- I have been doing some research on my own. It will do us both good to be on the new eating plan.

One of the things that the San Antonio hospital screwed up on: Sunday morning before discharge they brought him a breakfast tray. Contents were -- sausage patty, biscuit and gravy, hash browns. Of course Doug should have known better but it was right in front of him and he did not question it, so he ate it. When I got there I looked to see what he had for breakfast - ugh. So when the nurse came in I showed him the tray and asked him if that was low fat. All he said was "oops, they made a mistake".  Doug didn't seem to have any severe problems after eating it but he didn't feel too good.  Once again  I am reminded that we all need to be careful and NOT asssume that medical care is to be blindly trusted. Human error is everywhere. Be your own advocate.

On a happier note, it is a beautiful day here in Texas. Sun is shining, light breeze and temps in the 70's. Humidity is not bad (yet). Tomorrow we head home for the mountains and possible snow. We get to experience spring twice.

Love to all.

ACUTE PANCREATITIS

Well our trip to Texas started out on a good note -- we had good roads all the way, very little traffic. We drove 500 miles the first day and 440 the second day, but we took turns driving the truck camper. We got to the "Lone Star Corral", the RV park outside of Hondo, just after 5 pm Tuesday.

Thursday at about 4 am, Doug started having upper abdomen pains. We both thought it was related to over-eating the night before. As Thursday progressed, the pain got worse instead of better. At 3:30 pm we decided to go into the Hondo hospital (Medina County Regional Center). This is a very small but nice hospital. We went to the ER. We were there for hours, waiting for tests and test results. Finally the doctor diagnosed "acute pancreatitis". (Inflammation of the pancreas.) I was really shocked. Doug was in discomfort but didn't seem (to me anyway) to have the "severe pain" usually associated with pancreatitis. They started an IV saline drip and said he could have nothing by mouth (NPO).

The doctor in Hondo said that Doug needed to be hospitalized, but they were not equipped to handle it there because pancreatitis can have severe complications. So they would send Doug to San Antonio, 60 miles to the east of Hondo. It took over 90 minutes to find a doctor at Methodist Hospital who could/would admit Doug. Another hour for the EMS to come and take him by ambulance.  Since it was dark by now, Doug was doing well (sitting up and joking with the drivers) and I don't like to drive after dark -- especially in large cities that I am not familiar with -- I didn't follow. I would go home* and take care of the dogs and go see him in the morning.

Our good friend Shari offered to take care of the dogs while I went to S.A. That means so much and is a great relief.

So this morning, asking God to guide me through San Antonio traffic in the monster truck, I went to see Doug. During the night he said his pain increased and he is now getting IV morphine every 3 to 4 hours. With that, he is fairly comfortable. He can get up by himself to go to the bathroom, and we walked in the hall a couple of times. His pancreatic enzyme levels had been "sky high" Thursday but had come down today.  The treatment is to let the pancreas rest -- that means no eating or drinking, usually for several days. The IV fluids keep him hydrated.

I am very thankful that so far at least, Doug seems to be escaping any severe complications. One of the most severe possible complications can be kidney failure, so Praise God. The doc said that if he feels better tomorrow, and the blood work shows further lowering of enzymes, they might let him start taking clear liquids by mouth already. See below if you want to read "Pancreatitis for dummies".

love
Pat

*For RVers, "Home is where you park it."
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The pancreas is called the "hidden organ" because it is located deep in the abdomen behind the stomach.
The pancreas produces juices and enzymes that flow through the pancreatic ducts into the intestine, where they mix with food. The enzymes digest fat, protein, and carbohydrates so they can be absorbed by the intestine. Pancreatic juices, therefore, play an important role in maintaining good health. The pancreas also produces insulin, which is picked up by the blood flowing through the organ. Insulin is important in regulating the amount of sugar or glucose in the blood.

Acute Pancreatitis

This condition occurs when the pancreas becomes quickly and severely inflamed. The major causes are:


 Heavy alcohol ingestion


 Gallstones or gallbladder disease


 Trauma


 Drugs


 High blood fats (triglycerides)


 Heredity


 Unknown factors

(Note: Doug doesn't drink and has had his gallbladder remover several years ago.)

Symptoms, Diagnosis, and Treatment

The main symptoms of pancreatitis are acute, severe pain in the upper abdomen, frequently accompanied by vomiting and fever. The abdomen is tender, and the patient feels and looks ill. The diagnosis is made by measuring the blood pancreas enzymes which are elevated. A sound wave test (ultrasound) or abdominal CT exam often shows an enlarged pancreas. The condition is treated by resting the pancreas while the tissues heal. This is accomplished through bowel rest, hospitalization, intravenous feeding and pain medications.

Kidney function is better

Two days ago we went for Doug's Zometa infusion in Salida. The pre-infusion blood test showed a creatinine level of 1.5 and GFR is 50. That is better -- at least a slight upswing on the GFR. Normal creatinine is around 1.0, so he's not "normal" but we'll settle for improved. As I have said before, "Whew". The doctor had written orders to withold Zometa if the Creatinine level was above 1.5.

More good news -- Doug has recovered from his cold with no complications. So we are set to take off for Texas! We'll leave Monday in our little truck camper if the weather is okay. We plan to stay only two weeks, as Doug has a Dr. appointment coming up. We'll be visiting an old friend west of San Antonio.

Love to all!

Cardiology visit, Cough

Feb 10 we went to Colorado Springs, to Doug's cardiologist, Dr. Cole. He did an EKG and said it looks "fine". He has doubled the dose of Coreg, the beta blocker; this he said is because the intial dose was started off low and he feels increasing it will help the heart to stay strong. Dr. Cole says Doug doesn't need to see him again for a year, unless problems arise. The pacemaker will be checked twice a year by the tech. Sounds good to us.

Doug wore a mask in the cardiology office since he has a cold. The evening we got home Doug started to really cough. He coughed so hard that he hurt his back. He was sitting at the kitchen table and the pain was so intense that he could not get up. Two Dilaudid tablets and 30 minutes later he moved to the recliner. I was afraid that he had done something to his bones; we know that some of his bones are "spongy" due to the MM.

Next morning we went to our local clinic and Doug was seen by a young woman D.O. (doctor of osteopathy) who is excellent. X-rays did not show any bone damage -- whew! And the chest X-ray didn't show any pneumonia, another Whew! So Doug got a diagnosis of bronchitis and muscle spasm. We filled 3 prescriptions for muscle relaxer, antibiotic, and cough medicine. If he develops a fever we were told to call the clinic right away.

So Doug is temporarily sleeping in the recliner and taking it easy. At least the Winter Olympics are on, so there is something to watch on TV. And I have new library books to read. Life is still good.

We had to cancel the Zometa appointment so I don't have any new kidney numbers. And we are putting off our trip to Texas -- that's a bummer. But it could be worse.

Love to all.

Good checkup but "Mild Kidney Damage"

Yesterday we went to see Doug's oncologist in Salida, Dr Adam Myers. He sees Doug every two months.
Results of the last "multiple myeloma panel" blood test (that is sent to the Mayo Clinic) shows no evidence of any plasma (myeloma) cells in the blood -- good!

However, Doug now has "mild kidney damage". Doug's Glomerular filtration rate (GFR) last October was 59. Now it is 47.

Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through the tiny filters in the kidneys, called glomeruli, each minute.

When I asked Dr. Myers if that means that Doug has kidney damage, he said "Yes, mild damage."
He didn't elaborate, so I surfed the web to find out more. I try to be careful of sources so I went to www.nlm.nih.gov/medlineplus

"According to the National Kidney Foundation, normal results range from 90 - 120 mL/min. Older people will have lower normal GFR levels, because GFR decreases with age.
Levels below 60 mL/min for 3 or more months are a sign of chronic kidney disease. Those with GFR results below 15 mL/min are a sign of kidney failure."

I really don't like the drop from 59 to 47 in three months time. Dr. Myers doesn't seem overly concerned at this point.

We know that MM can affect the kidneys. Pieces of monoclonal antibodies, known as light chains, frequently end up in the collecting system of the kidneys, sometimes permanently damaging them by interfering with their filtering function.

Not much to be done except to keep Doug hydrated - so I will keep encouraging him to drink a lot. Encouraging morphs into nagging very easily!  It wouldn't hurt to limit salt intake either.

Meanwhile, life is good -- we are walking more, as weather allows. We look forward to taking the truck camper out and going to Texas next month.

Love to all.