May 1, 2012 Update

Dad saw Dr Rose today according to Dr Rose's notes.  Dr Rose could see dad's ear drum, I believe, there was scant discharge suctioned, the ear canal was opened.

April 30, 2012 Update

According to Dr Rose's patient notes Dad was seen to day for pain in his left ear hurts and swollen.  A wick was placed in dad's left ear with ciprodex.  Dad's ear canal is swollen shut.

April 24th

He had his third shot this morning.  His hgb is up to 9.4 and his HCT is up to 27.9.  Both of these numbers are improving.  It’s hard to say if he has a substantial amount of improved energy.  He did go out dancing last night until 10 pm and was at the Dr.’s office at 8:30.  This is working out to be a pretty good deal for me too, as he buys me breakfast after the shot.  I can tell you he’s got a pretty good appetite… for breakfast anyway.

John

April 10th

Saw Dad this morning for his 2^nd EPO shot.  His numbers were up a bit.  Just wanted to let those who were concerned about his leg know that he went dancing with Nedra last night.  He said he was out of shape and had to take a break, but they had fun.  He did say he thought his leg was getting better.

HCT - 24.5, HGB - 8.2

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