The Rosewood Experience

I met with Tom, Mary, Bill, Debbie, and Dad at 11am for a tour of Rosewood Retirement home.  They had two apartments available and we looked at them both, then enjoyed lunch in the dining room.  Vannesa the Marketing Director is very competent.  Dad seemed a bit down, but the place is really nice.  There are a lot of activities and the people who live there control their own space and take part in meal planning, activity planning, and are generally a cheerful lot.  I think once Dad has a chance to experience it, he will do well. 

Rosewood is almost at capacity and so things may seem to be moving fast for him.  Personally, I think the approach Tom and Bill took with him is very good.  They are emphasing:

• That this is a rehabilation option that is NOT the hospital. 
• He will get to have his own place and yet be assisted. 
• This is a temporary arrangement. He can stay if he likes it or he can move back home when he gets stronger.

No decision was actually made.  He was going to speak to Bill about the financial arrangements and see if Rosewood can perform the medical tasks we need to have done.

From the Dr. Nguyen visit earlier today comes news that Hedari and Nguyen believe the fluid in Dad's abcomen IS becoming a problem and he will have it removed probably this week.  Bill says his breathing is being affected and Nguyen feels it's because the fluid is preventing his diaphragm from fully inflating his lungs.  Dad's red blood cells are increasing and we're hopeful this will help with his energy level.

Dad's pain is subsiding.  Bill told me today that he was trying Dad on just Tylenol, no codeine.  His bowels are behaving better, too.  We'll see how this works.

I am a little concerned with Dad's kidney function and Bill will make sure this is addressed by Hedari on Thursday.  His creatinine level is up to 2.9 which is fairly high.

It's great having Bill and Debbie managing everything.  There is a lot of information coming from a lot of directions and they do a great job of collating, passing it along, or finding descrepancies.  They are also great at giving us (Tom and I) stuff to do as well and I hope we're able to take a little of the load for them.  I can't say it enough - Thanks. I'm not sure where Dad would be if you weren't here.

John

August 9th ~ Is this improvement?

This may mean something. It may not, but either way it's a change and I believe a positive one.

I haven't looked at a blood test result for some time. Frankly there weren't many changes. Bill handed me the results of the samples collected on 8/3 and I immediately noticed a difference. Every blood test that I remember looking at, Dad had a WBC of 6 or 7. That's fairly normal for you or me, but Dad had an ear infection. Why wasn't it higher? (WBC or White Blood Cells are the pac-man like cells that have the task of getting rid of the infection.) He has and infection. It SHOULD be higher. Well the results I'm looking at now reflect that. Dad's WBC was 15.3 - double what it has been running! My interpetation is that his immune system is starting to wake up!

The test also differentiates the white cells into groups. One of the groups is called neutrophils. Neutrophils have the ability to digest bacteria cells. In June Dad's neutrophils were 3.3 - on the low end of the spectrum. This week they are almost tripled to 8.9. Lymph cells, another type of white cell, were 1.8 in June and they too have tripled to 5.6. I would be asking the doctor before I got to excited about these results - maybe Dr. Hidari would have some input. I think they very well could be a positive result of the chemotherapy and an early sign that Dad's immune system may be coming back online.

The other results show that Dad's kidneys are running about the same level with the creatinine at 2.22 and the BUN at 62. One point of interest, and I'm not sure this is good, but this test was taken after Dad had diarrhea for 4-5 days. Remember, when Dad's potassium was high and they gave him a med to give him diarrhea to bring it down? Well, just based on that, you would think Dad's potassium would be low, but it wasn't. Not sure if that is significant at all.

July 18th

Tom, Dad and I saw Dr. Nguyen this morning at 9am.

 The doctor said he had a little fluid on his right side, but not enough to warrant a drainage.  He said he believes the body will heal that problem on its own, however we should watch it.

He went through all the drugs he's on and removed the Furosemide and lowered the dose of the Allopurinol and Sodium Bicarb.  See the attached sheet for more details on his medications.

He said the prednisone is on a cycle, 1 week on, 2 weeks off, following each chemo treatment.  He said dad should have more energy when on the prednisone and may have difficulty sleeping.  2-3 days after his last dosage, which will be tonight, Dad should want to sleep more at night, like 10 to 12 hours.  This is normal and to be expected.  However, after 12 hours, it is best if he gets up and around.

Tom asked the doctor if someone should stay with dad now, or around the chemo treatments.  He turned to Dad and ask him if he knew how to use a phone, in an up-beat, non-sarcastic tone, and dad said yes.  The Dr. then turned to us and said, I see no reason why he can't continue to live alone if that is what he wants. Tom asked if he could drive while on these medications and he replied yes.  At Costco, while we were waiting for his perscription, I mentioned I would be happy to stay through the weekend and that both Cate and Billy said they would be more than happy to come back down as well. He smiled and said he would be fine, and got a little teared up.  He knows we love him.

Note: His next office visit is 8-1-12 @ 3:40pm, he will likely get his next chemo treatment the following day.  He will be back on the prednisone and should be fine for traveling down to San Diego.

We're headed to Dr. Nichols at 2:45pm today.

...Jim

Afternoon:

Trevor at Dr. Nichols was who we saw.  He came in prepared, had read all the previous notes and was well informed.

Key points:

1) He ordered the blood work and cc: all the doctors.  They took Dad's blood while we were there.

2) He doesn't feel they should have taken him off the Furosemide 40mg. This is for swelling, which Dad showed a little of in his legs.  As a compromise, Dad purchased some compression knee-high socks for $40 that he should wear when around the house. He should also use a pillow when in his chair to elevate his legs.  Therefore, I did not discard his Furosemide, just in case they decide to put him back on it. They're good until Feb 2013.

3) He made an appoint for dad to follow-up with Dr. Aziz, his Pulmonologists. Note the appointment is for 7/25/12 @ 1pm. That was the only time they had available.  The goal is for Dr. Aziz to monitor Dad's breathing and to establish a relationship with this Dr. on all issues related to his lungs.

4) Trevor said that Dr. Nguyen is the captain of the ship, with Dr. Aziz, Dr. Saiki & Rabinov as running backs.  He said he didn't see any reason to make Dad to continue follow-ups and asked to see him again in 3 months.  Note, Dad's next appt with Dr. Nichols is 10/17/12 @ 3:45pm.  He said if we need him, just call and they'll get dad right in.

5) Trevor said he thought Dad's lungs sounded great, just a small amount of fluid on his right side.  He checked his ear also and said it was looking great.

I think it's good we have a follow-up appt with Dr. Aziz.  As the Prednisone leaves his system over the next 2-3 days, if he has trouble breathing we have a follow-up with a lung doctor next Wednesday.

Dad's spirits are good.  He's tired, probably from beating me at 5-straight.  Becky called, she coming over tomorrow to get a few tips from the master before her 5-straight arrives from Amazon.

His medications are becoming a bit tricky. I'll restock his pill case after dinner, he'll need help restocking it before it runs out a week from tomorrow.

Let me know if I missed anything.  Whenever I wake-up tomorrow, I'll be heading back to Bend.

Love,

...Jim

June 18th

Quick notes on the Dr. Saike visit.  Dad’s BP was 148/64, weight 164, temp 99 (it’s hot here)

Dr. Saike was pleased that the creatinine level and kidney function have “stabilized”.  Dad’s legs were mildly swollen and he showed me how to check it in the morning.  He said most peoples’ legs swell in the afternoon and he would only be concerned if it were like that in the morning.  Dad got the blood boosting shot again although we are near the upper limits.  We will still check his hct every two weeks, however.  Dr. Saike said that with his body not struggling to fight the infection it may be easier for him to make red blood cells.  Dr. Saike doesn’t need to see Dad until October, outside of the bi-weekly office visits.  They agreed to do the finger-stick blood test at the office so we don’t have to go somewhere else to have the labs.  When we mentioned Dad was urinating less frequently Dr. Saike said that has NOTHING to do with kidney function but the amount of fluid he intakes

June 12th

Dr. M. took some blood and there were some positive results I thought you might like to hear about.

First, his red blood cell count was 3.1.  My records show it hasn’t been higher than this since Feb. of 2010.  His hemoglobin is above 10 for the first time in a long time and his hematocrit is over 30, again for the first time in two years.  More importantly is his kidney numbers stayed steady through his hospital experience.  His BUN, which is body’s ability to get rid of wastes, was 46, down from 64 in March.  And his creatinine stayed steady at 2.5.  These results were not fasting and I’m not certain if that skews the results.

On a side note, Bill – I’m not sure the hemoglobin/hematocrit results will suffice for Dr. Saike’s visit next week.  Again, I’m not certain, but I think I remember Dr. Saike’s office saying the results had to be within seven days.

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.

May 3, 2011 Update

I saw Dad this morning. He looked well…for being in a hospital. They changed his dressing at 2am. The kidney doctor returns today.

Enclosed is the link to two audio files. One is Dr. K and the procedure done in Dad’s hospital room to drain the abscess. I think it is elf-explanatory. Tom and Mary provide some great commentary as well as insightful questions. Dad talks about it at the end and Mary recaps the episode. It’s about 20 minutes long.

The Kidney Specialist (Dr. Psyche (sp)) is about 15 minutes and there is a lot of talk of Dad’s kidney function. The Dr. Talks about high blood pressure and tries to clarify if Dad has it or not. This is important because if Dad’s blood pressure was high before he started taking medication that could have impaired his kidney function. Keep an eye on your blood pressure people! I think one of the more interesting pieces of info was the doctor saying that as kidney function goes down you cannot concentrate your urine and that causes frequent urination…one of the complaints Dad has.

Dr. K Visit

http://www.mediafire.com/?mo6mm4300vk7xqj

Kidney Specialist

http://www.mediafire.com/?ojfaa54f2uhxv7x

As always if you have any questions, feel free to call.

Love you,

John

May 2, 2011 Update

Dr. K just finished lancing Dad’s abscess. Mary said there was a lot of fluid inside. They did it right there in the hospital room and then packed it with some wicking material to draw out the infection. Dad was under a small amount of morphine for the pain and he tolerated the procedure well. If I had to speculate on what the next few days hold, I would say Dad will stay in the hospital, remain on antibiotics, and have the nurses change his dressing. There is some concern over his kidney function and there may be more on that in the coming days.

His blood pressure remains good and his temperature is back to normal.

That’s it for now,

John

Tom called with Dad’s recent vital signs:

Temp 97.1 down from 100.2 last night

BP 130/61

O2 Sat rate 97

Heart rate 60

There is fluid coming out of the incision that was done to remove lymph nodes. Doctors are supposed to come by this afternoon to evaluate and recommend solutions.

Mary was going to bring Dad some food from the outside so at least he would have a good lunch.

That’s it for now.

Love you,

j

Feb 1, 2011 Update

Attached are the notes from yesterday’s doctor visit. You will see that he ordered several blood test again, the main one rechecking the kidney. He is also checking on dad’s anemia and if it is too low he will order a blood transfusion for dad.

Dad is primarily concerned with his control problems and told the doctor that the stream is better sometimes, but that the frequency is not. The doctor told him that it might take time for the swelling to go down and see some improvements in the frequency.

He reviewed all his medications and told him to continue all the prescription meds.
Dad was given a cream for the rash on his back, but the doctor was unsure as to what caused the rash.

The doctor also told dad that he has swollen limp nodes about 1 inch around. These were detected on the CAT scan they did of his kidney a few days before his surgery. The doctor told us that to evaluate them they would have to open him up from his belly and work their way to the back to biopsy them, they are located near his back, but there is no easy way to go in from his back. If it is cancer, then the chemo treatment would have to be sever to have a chance of killing them.

The doctor also discussed his anemia stating that they would like to go into his bone marrow in his thigh to see why it is not making enough red blood cells.

Dad refused both procedures and told the doctor, fix the frequency problem first and we can talk about what is next.

We did talk dad into trying a sleeping pill at night to see if he can sleep better. Dad wrote down every time he got up the night before his doctors appointment and it was at least once per hour. He did try 1/2 pill last night and said it wasn’t much better, but he didn’t get up until Tom went over at 9:45 am and did have a 2 1/2 hour period where he didn’t wake up.

Dad’s next steps are:- Blood test again the week of Feb 28th.- Drs appointment on March 7th at 2:45 pm with Dr Nichols- Follow up with Dr Chang on April 25th at 11:40 am.Tom, let me know if I missed anything.

Love to all,

Bill