March 15th

I just got back from Dad’s appointment with his kidney doctor.  Good news - his kidney function based on creatinine level improved slightly.  The doctor didn’t have the ultrasound results.  We chatted a bit as the doctor explained there was still some concern about protein in his urine.  The doctor had done some tests to try and determine why but had not come up with anything definitive.

Dad’s BP was 158/79 with a pulse of 60.  The creatinine went from 2.9 to 2.4 (1.6 is high normal).  Of the proteins found in Dad’s urine he said none of them were “abnormal” but that they were 3 times higher than they should be.  I asked if it could be from muscle breakdown and Dad asked if diet played a role.  Both answers came back “no”.  The kidney has a barrier where it can filter the blood to clean it, but should leave the protein behind (to stay in the blood).  Dad’s barrier isn’t doing its job and the doctor is looking to see if he can do anything to improve that situation.

As we were wrapping up, the doctor asked about how Dad was feeling in general.  Dad came by the store for a visit yesterday and he spoke about his lack of energy interest in doing things (although he went to the community concert by himself last night and Kyle’s baseball game the night before).  Anyway, I brought this up to the doctor and mentioned his anemia.  The doctor then talked about treatment with a drug called EPO, a hormone secreted by the kidneys to stimulate red blood cell production.  Red blood cells carry oxygen.  I have asked Dad’s regular doctor (Nichols), his PA (Trevor), and cancer specialist (Mokabadi) about using this drug and they all said Dad was not “there” yet.  While not encouraging the direction, I’ve wanted Dad to try this simply for the improved quality of life I thought it might provide.  This doctor explained that there were risks such as stroke, if his body makes too many red blood cells, and tumor growth, which is why Dr. Mokabadi wanted to do more tests.  Dad would have to get a shot every two weeks and have his blood checked every interval.  I tried to stay neutral in advising Dad as we asked about the side effects and negatives to this approach.  There really didn’t seem to be many, besides the inconvenience of the shot frequency and blood tests.  If there is some underlying condition they have not discovered the EPO may aggravate that condition.

Even if that is the case, I still believe this is the correct course of action.  Dad is slowing down both mentally and physically and I believe it is due in part to the lack of oxygen.  I’ve seen him climb the hill to tennis and have to stop halfway.  He mentioned that he parked in front of our store to walk to the concert and the walk back exhausted him.  This is a non-invasive treatment that may offer some benefit.

They were not able to start the shots today.  They have to get approval from Dad’s insurance carrier.  We will keep you posted on the progress.

Dec 26, 2011 Update on Dad

Hope you all had a Merry Christmas. We missed you.

When we went to breakfast on Dad’s birthday he wasn’t wearing his hearing aids. He said it was because his ears were bothering him. Tom tried to call his ear doctor from the restaurant, but she was gone for the holiday. Dad seemed a little down and we attributed it to him not being able to take part in any conversations.

That night at his house, he again looked a little down. The house was nice and festive and he had the dinner going. You all spoke with him and probably noticed he was distracted.

On Christmas morning Tom called and said Dad ears were bothering him so much he really didn’t want to come over. Tom convinced him to go to emergency were they diagnosed an ear infection and prescribed some antibiotics. Dad did go over to Tom’s for a good Christmas meal. Dad will see his regular ear doctor on Tuesday. I haven’t spoken with Tom or Dad and I don’t know if he is feeling better today.

We have plans to have Dad’s anemia and kidneys checked in January. We’re not sure what options will be available, but we need to get a status update. We will do our best to keep you updated.

Love you all,

John

July 25, 2011 Update

Dad had asked Tom to call Dr. Chang, the urologist, for a consult on why he was peeing so much. Tom took dad today and they performed an ultrasound. There were no major revelations. Dad has some blockage of the kidneys and Dr. Chang ordered a test for that. He is also going to do a urine retention test. Have Dad drink a lot of fluids in Dr. Chang’s office and then they will measure how much Dad pee’s and the strength of the stream. That test is tomorrow. There is also some blood work being done to determine the state of his kidneys. Dad’s been doing well the last couple of months. He was scheduled to do a kidney follow-up with Dr. Nichols in August, so the timing of this is about right.

That’s it for now. Hope everyone is well,

John

May 20, 2011 Update

I'm in 100% agreement with most of what you said and 120% with the rest, including my cooking skills. :)

Thanks for a great update.

...Jim

On May 20, 2011, at 12:57 PM, "John "  wrote:

Dad played tennis this morning. He seems relaxed. He played well. He went to Grant’s baseball game last night and enjoyed seeing Grant hit the game-winning run in the bottom of the last inning. 

We have cancelled Dad’s appt with Dr. Chang. He’s happy with his prostate function and for now sees no need to have the tests Dr. Chang wanted. 

This is a risky strategy and could come back to haunt us later, however I believe that this approach is best for Dad. Who knows how long his eyesight and/or kidneys will last? Since these don’t appear to be easily treatable conditions, I agree with the approach to let him have as much fun as he is able to right now. (I know that last sentence sounds ominous. It is not meant to be. I just want to acknowledge that we are aware of the risks involved in this decision.) For now he continues to appear stronger, healthier (probably from Jim’s cooking) and has resumed his activities and that is the most encouraging sign of all. 

John

May 18, 2011 Update

Went to Dad’s this am. The wound is closing fast. It looks good. We have cancelled all home health visits for the foreseeable future. He would have played tennis this am except for the ¼” of FREAKIN’ RAIN falling in Bakersfield in MAY!

John

May 17, 2011 Update

We saw Trevor the PA at Dr. Nichols office. He had some interesting insights on Dad’s health issues. After describing Dad’s health status before the biopsy and his status now, he did seem to agree that the information we could have determined from the tests was not worth the procedure. His feeling is that a bone marrow biopsy is needed and the two main diseases that could be determined from that are not treatable, so why bother.

Dad’s wound is healing nicely. The HH nurse yesterday had to use the wooden end of the Q-tip to get the wicking material in. Tonight we remove the wicking material for good and see what happens. The HH nurse is scheduled for tomorrow morning and I’ll be there to see if we might be able to discontinue that service. Dad is anxious to get back to tennis and with the nurse coming M-W-F that is difficult. The PA prescribed one more week on antibiotics as insurance against another abscess.

On the anemia front, while Dad’s numbers are low, they are not catastrophic. If they do get low enough for him to have a transfusion, then a nephrologist (kidney specialist) would prescribe epoitein(?), a hormone to stimulate the bone marrow to produce more red blood cells. The PA’s feeling was that the anemia is caused by Dad’s renal insufficiency. We will monitor Dad’s Red Blood Cells and kidney functions every three months. As for future doctor visits, he has one with Dr. Chang near the end of the month. No more with Dr. Nichols (unless the wound starts acting up again) for three months.

We got to spend some time in conversation while waiting for the doctor. Dad says he is eating well. He is feeling good and wants to get back to his routine. I think he is looking forward to living and not constantly going to the doctor. He is looking forward to the Boston trip in the fall. And, as a by-the-way, feels that Boston Rob did a great job on Survivor and deserved to win the million bucks.

Love,

John

May 16, 2011 Update

Dad’s home health nurse came by. It was a different person, Donna. The wound is closing up quickly now. She could barely get any wicking material in the incision. She also was able to forego the large pad bandage and just use the 4x4 gauze pads. Dad is talking about playing tennis soon. We see Dr. Nichol at 7:45 am tomorrow. Look for the next report then.

Love,

John