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

May 13, 2011 Update

Yep, I can make the Tuesday appt. I'll talk to Dad this weekend and see if
he wants to meet there or have me pick him up.

Thanks again, Jim for being around this week.

John

-----Original Message-----
From: Jim Harrer
Sent: Friday, May 13, 2011 2:04 PM
To: John Harrer; Tom Harrer; Bill;
Subject: Dad update...

Dad and I just finished another long walk. He's doing great. He
really wants to be in good condition for the Boston trip, so he's
motivated to stay on a program.

Dr. Nichols had an emergency with a patient today and couldn't see us.
I rescheduled for:

5-17-2011 @ 7:45am - assuming John could make that. I know it's
early, so if you would like another time their number is 323-8477.

The only question I really had for Dr. Nichols is how often he wants
the packing changed and how deep he wants it based on what the home
nurse is saying (ie. don't use so much and don't clean as deep with
the q-tip). The home nurse from Mercy used way more than I use, so I'm
not sure which procedure is correct. I see both points. We need to
find out what is best. One question I was going to ask is, if the
packing only needs to be re-packed once a day, then Dad could change
the outter dressing himself.

Central Methology called to remind us of an appointment on 5-17-2011 @
2:15pm. Dad doesn't know what this is for? Is this the kidney
follow-up that we want to cancel?

Dad is eating great, he's been eating three meals a day with me and
likes being on a schedule. I have been teaching him my old routine on
how to cook for one. He has been a good student and open to new
ideas. He has really been wonderful to be around ALL week. I just
have to be careful to not waite on him too much, he doesn't like it.

Let me know if I missed anything or if you have any questions.

Love,

...Jim

May 11, 2011 Update

Dad is going GREAT!

Medicare has agreed to pay for Optimum Health Care to come by Mon,
Wed, Fri at 8:30am to change his dressings and repack. The male nurse
who came by today said he will be the same person who comes by each
time. His name is Manuel. He left his cell # with Dad and told him
he could also call him 24x7 if he needed help. He seems to think he
won't need to come by for more than 2 weeks - but said Medicare will
pay for as long as Dad needs him. Optimum has John, Tom and my cell #
numbers as contacts.

Dad is eating great, and doing well. We went and had coffee with this
tennis buddies today at 9:30am and everyone was happy to see him.

The next follow-up appt is Friday with Dr. Nichols.

I honestly think Dad could easily get to a point where he changed his
dressing (not packing) once a day and you just change the packing
daily if you wanted to go to that schedule after I leave. That would
get you down to one visit a day if you wanted. Whatever Tom and the
doctors decide is fine by me, I'm just throwing that idea out there
since the nurse seem to think twice a day (at this point) may be a bit
overkill. I do think the top dressing should be changed more often
then he suggested however.

Hope this helps. Like I said, he is doing well. He also told me he
did go to the dentist recently, but couldn't tell me exactly when. He
changed dentist when the last one charged hum $1,000 for a deep
cleaning - that was 18 months ago. A call to his current dentist
might be in order just to check the facts. I'll try and dig more.

...Jim

May 9, 2011 Update

Hi Everyone,

Dad is home and is looking awesome. His energy level is improving
daily. He's glad to be home, however he's already bitching about
missing Mary's cooking.

Today's doctor appointment with Dr. Nichols went well. Dr. Nichols
gave dad a full exam and redressed his incision and re-packed the
wicking. He told Tom that he has done an amazing job being a male
nurse and if it wants to make $38/hour - he's welcome to join his
medical staff. Tom's retirement is looking solid!

All kidding aside, now that I have watched the clean-up procedures
twice, I have a better understanding of what is going on. Tom has
achieved rock star status in my book.

Dad's vitals were good, BP 126/74, temp 97.2. He's in good spirits,
not in a lot of pain, more discomfort than anything. The swelling is
doing better but still has a way to go. Dr. Nichols asked to see him
again Friday at 11:45am.

Dr. Nichols said he wasn't too concerned over Dad's kidneys. He said
he didn't feel his elevated levels were in the dialysis range. He
also was blunt about the suggestion we place him on a new diet. He
said it is common for people to want to listen to a nutritionist and
try to fix things. He said, at 87 let him enjoy what he enjoys. To
Tom's point however, living on cookies and cereal is simply not
healthy. I get it though, cooking for one, especially for guys, is
pretty boring. I did go shopping last night and restocked his
kitchen. I totally understand a lot of it may go to waste - but I just
couldn't stand to see no real food in the house. Tom/Mary have done a
great job of making us aware of this; I'm not sure what the solution
is. I'm fearful if we have food deliver, he'll simply not eat it and
it will stack up. It might be a good idea to go grocery shopping for
him every 2 weeks anyway and also throw the dated stuff out. If it's
here, he might make better choices.

He's glad to be home, he wants to go to Grant's last baseball game
tonight (which Tom has green lighted) so things are looking good. He
gets to taste some of my home cookin tonight, so the pressure is on me
to deliver. I better go, I have to go turn on the food channel.

Love,

...Jim

May 5, 2011 Update

Update for Thursday morning. Health care nurse came and showed Tom how to change the dressings, yes I said Tom, and he did a very good job.

Heart rate 60
Temp 98.6
B.P. 136/68

He sleeps good, eats good, and looks good.

All is going good here.

Mary

May 4, 2011 Update

I just talked to Mary. Dad is awaiting to be wheeled out of the hospital (that should only take an hour or two ;>))

John

Dad is being released today into Tom & Mary’s custody. He is looking good. I got to meet Dr. K and watch him clean and repack Dad’s abscess. We will have to do this once a day (although I think Tom is trying to negotiate a home-health nurse). The abscess is much improved. Dad’s original incision was 6-7” long. The current incision is about ¾” – just big enough to let the fluid out and be packed by ¼” wicking ribbon. The fluid coming out is yellow, lymphatic fluid. It could take weeks for this thing to heal completely.

Dad is stronger than he was yesterday. Tom took him around the floor and that tired him out some. He did shower himself this morning. The antibiotics have given him diarrhea even though we started him on some probiotics on day one. He is still in some pain but refuses to take morphine (even though I told him it would be helpful for the diarrhea too). The kidney doctor was in at 6:30 am so we missed him.

I am leaving for Sacramento tomorrow to see Bill and go to a horse training demonstration. I’ll be back Sunday night. I hope to give you one more update this afternoon. As always, feel free to call me at the store or on my cell.

Love you,

John

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

March 29, 2011 Update

Well, we are still digesting this information:

Dad was scheduled to return to the surgeon who did the biopsy last week. That appt was for 2PM followed by a visit to Dr. M. at 3:20. Dr. M’s office called and said they cancelled the appt because the results didn’t show anything. As the kids might say, “WTF!?!”

Dr. Kay, the surgeon said the results did not indicate anything and that Dr. M would likely request another biopsy probably from under the left arm. If you listened to the audio with Dr. M. we asked where the first biopsy would be and he said he would leave that up to the surgeon. When pressed, he said that was the best way to go. Now, Tom and I remember him spending a lot of time under Dad’s left arm and wondered why he didn’t just go there first.

Dad says he’s done for awhile. It’s hard to blame him. Each part of this journey we’ve (or the Dr.) said, “Just this test and we’ll know exactly what’s up and be able to fix it.” And the results have always been another test. The inactivity from having the tests performed has probably affected his health more than whatever is going on. Okay, maybe that’s an exaggeration, but I don’t think we really know.

For now we believe he is going to take a break from the doctors. Tom asked him if he wanted to schedule an appt with Dr. Nichols and he declined. Nedra will be back on April 1 and we think that may really perk him up.

Love you,

John

March 22, 2011 Update

Tom just called. Everything went well and Dad is in the recovery room. The doctor removed two lymph nodes from Dad’s abdomen. He can not drive for a week. He can not play tennis for three weeks. They want him to stay with Tom for a couple of days to recover. We have a follow-up with the cancer specialist on Tuesday the 29^th and another with the surgeon just to make sure this surgery is healing properly.

I think that was all for now…

John

March 21, 2011 Update

Dad goes to Memorial hospital tomorrow at 9:30 am for a lymph node biopsy. We are told this is a minor, out-patient procedure that will get us a definitive result on the condition of Dad’s lymph nodes. Tom will take Dad in and get him back home. I will update everyone via email as soon as Dad is back at home safely.

Love to all,

John

March 9, 2011 Update

Hi all,

Dad had his consultation with the blood specialist yesterday afternoon. I digitally recorded about 8 minutes of the Dr.’s discussion. I missed about the first 10 seconds. You can download the discussion, if you wish, using this link:

http://www.mediafire.com/?daeucil3c1n5isl

The Dr. suspects lymphoma but needs to confirm the diagnosis, type, and style of the lymphoma and has recommended a surgeon take one of Dad’s lymph nodes for biopsy. Tom is taking Dad to the surgeon today for an initial consultation. It should be an outpatient procedure. We have a follow-up with the blood specialist in three weeks.

We also got a copy of the PET scan results. I would be happy to fax anyone a copy if you wish. There a couple of frustrating points from the visit, mainly the fact that we didn’t get a concrete diagnosis. Perhaps that’s good though. It could still be a non-malignant lymphoma. The pet scan was listed as “a comparison to the prior CT scans …of July7, 2009” which I interpret to mean that they saw something back then, but failed to adequately communicate their concerns to Dad. The PET scan report is fairly technical document, but I can see a few positive notes such as this statement, “Again, the overall changes suggest mild progression of lymphoma.” And, “Both lungs are clear without pulmonary nodules or pleural effusion.”

I am hopeful that this biopsy will give us a firm diagnosis and a list of treatment options to choose from. Saw Dad this morning. His tennis game is about the same. His eyesight seems to be pretty good. I think he has lost some muscle strength though.

That’s about it for now. Let me know if you need anything.

Love you all,

John

Feb 16, 2011 Update

Here is the link to the audio file of Dad’s 1^st consultation. It’s the last 5 minutes and the voice you hear is Dr. Mocha-ba-dye.

The final results will come on March 1^st.

I’m not sure if I mentioned this yesterday, but the Dr. asked if we had been there before. Tom & I looked at each other, Dad shook his head no, then when the Dr. said it looked liked there was a scan done in 2009, Dad said, “oh yeah, Dr. Nalos ordered that”. The Dr. then said that the report mentioned something about lymph nodes in that report and Dad replied, “He gave me the results and said everything was fine.” Dr. M looked puzzled and said not to worry they would do the tests again to see where we are at. The two things I take away from this is could we have done more if we knew back then, and if it’s been going on for two years it must (hopefully) be slow moving. Anyway, Dad has one scan today and one tomorrow. Take care. Love you,

John

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

Jan 19, 2011 Update

---

Subject: Dad's Upcoming Procedure
Date: Wed, 19 Jan 2011 10:59:51 -0800

Cate, Bill, & Jim,

We have more information on Dad’s upcoming procedure on January 26^th. There are two approaches to opening the urethra. One involves laser and one involves scraping. The scraping procedure is a little more invasive. Either way Dad will be out of commission for two to six weeks depending on the severity of the procedure and his healing time.

As with any medical procedure, especially on an 87 year old, there are dangers. Dad is having a kidney function test on Friday and goes in on Monday for a pre-op check. His heart has tested well, but the anemia could be a problem. His procedure will last 2 hours. We believe his doctor to be competent and thorough.

Tom and I discuss our roles here at great length. We try to relay the information we have accurately and completely. We understand the distance between us must make it very frustrating for you. It’s difficult to word this without sounding dramatic. After all, the doctor says he has been doing this procedure for five years and has performed it on men as old as one hundred. Tom and Mary will take care of Dad after the procedure. They are very good at this and Dad is very comfortable with them. But Tom also wants all of you to know that his home is open to anyone who may want to come down to be with Dad before, during or after the procedure. It may be a bit crowded at his house, but he wants you to know that everyone is welcome.

Again, it’s difficult to convey this kind of stuff through an email. Are we worried? Yeah, we are our mother’s sons. It’s genetic. Dad has never had a surgery, so we have nothing to compare this experience to. Are we confident this is the right direction? We believe so. For Dad to want to undergo a surgery to correct this problem demonstrates how much it is cutting into his quality of life.

If anyone has any questions, please feel free to call. If anyone would like to come down, Tom’s home is open.

Love you all,

John

Jan 11, 2011

Hi Everyone,

He are some notes on Dad's visit today with Dr Chang.

Dad had a visit with Dr Chang today, two days after his surgery. Prior to the appointment, last night, dad pulled out his catheter during the night because it was leaking where the tube exited his body.

Both the doctor and nurse examined the catheter and made sure that all of it was removed, and it was. The doctor asked Dad if his flow was any better and he said it was the same as before the surgery. The doctor said that it was normal and that it might be due to swelling and that it could take a couple of weeks for the swelling to go down.

Dad was told not to drive for another week, and that he shouldn't play tennis or do any dancing for about 4 more weeks - so as to give himself time to heal properly. He was told that walking is good, but only in moderation, not walking more than one mile at a time. He should also be drinking more water than normal, but he does not have to drink large quantities. Dad need to be cautious, not doing anything strenuous, and was told to avoid heavy lifting.

Dad was given three meds when he left the hospital. Vicodin for general pain from the surgery; Toviaz (4mg) for frequency of urination or bladder spasms; Pyridium (200mg) for burning when urinating. All three are to be used as needed.

I then asked the doctor about the procedure and what he should be expecting. The doctor took another 10 minutes and told dad that some patients have a full urine stream within 48 hours, but it is not uncommon for men not to have a normal stream. Dr Chang said it could take 2 -3 weeks for the stream to return to normal because of swelling, if the laser surgery was successful. BTW, Dad only had the laser portion of TURP, not the portion where they use a tool to scrape the wall of the urethra. The doctor brought in some props and drew some drawing explaining the procedure further. He mentioned that while the prostate enlargement covers a broader area than the portion they removed. In the picture below, the area that they removed the tissue with the laser is approximately from the points of the ejaculatory duct to the prostatic utricle. The doctor explained that going below that there is a greater concern for incontinence. Generally when they relieve the swelling of the upper portion it also helps the lower area, but in some cases, and not way to predict which ones, removing the swelling in the upper portion causes the lower portion to become worse.

Dad will be re-evaluated at a follow up appointment on April 25 at 11:40 am with Dr Chang. Anytime during the week before that he needs call and go into Dr Chang's office for a uroflow test. This will basically test how strong a stream he has. The flow will take about 3 hours and most can be done at home, but the office needs to know when he is coming in. Dad has an instruction sheet on the procedure at home.

If Dad is still having problems urinating at his April appointment, they will probably schedule him for a TURP where they use a cutting blade to remove the swelling around the lower portion of the prostate, typically between Prostatic utricle and Prostatic Urethra portion of the prostate. This is a trickier area to cut around, thus the a more precise tool.

Dad also needs to repeat his Kidney test in about a month, the end of February. The doctor is looking to see if his kidney function is better, the same or worse. He said it should be the same or better, just not worse.

Toviaz side effects; dry eyes, insomnia and urinary tract infections and should not drink any alcohol. Constipation, and nausea and heartburn are also common side effects. The most common issue is that you feel you have dry mouth.
Vicodin side effects; vision, dizziness, shortness of breadth and constipation problems are typical.

Pyridium side effects; headache, stomach upset and dizziness are the most common side effects.

All three also says sever allergic reaction would be a rash or shortness of breadth.

Dad has information sheets on all three medications.

Please let me know if this is not clear.

Bill