Radical Double Nephrectomy Medical Reports

Here are all of the reports from my recent Radical Double Nephrectomy. [I think] I have removed all of my physician names [from the reports] as I do not have their permission to use their names in my blogs.

For those who are interested, these documents are fascinating reading. The pathology report is especially intriguing.

Pre-Op  Page 1   (30 Oct 2013)

 

Pre-Op  Page 2   (30 Oct 2013)

 

Pre-Op  Page 3   (30 Oct 2013)

 

Pre-Op  Page 4   (30 Oct 2013)

 

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Operative Report   Page 1   (15 Nov 2013)

 

 

Operative Report   Page 2   (15 Nov 2013)

 

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Post-Surgical X-ray Report    (15 Nov 2013)

 

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Surgical Pathology Report   (15 Nov 2013)

 

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Post-Op Discharge Summary   Page 1   (19 Nov 2013)

 

 

Post-Op Discharge Summary   Page 2   (19 Nov 2013)

 

 

Post-Op Discharge Summary   Page 3   (19 Nov 2013)

 

 

 

 

 

 

 

31 December 2013

The last day of the year is upon us already.

So, appropriately enough, here is my last entry of 2013, as well...

Dialysis Weights:

19 Dec 13
Starting Weight:  105.1 Kg
Ending Weight:  103.2 Kg
Water Removed:  1.90 Kg

21 Dec 13
Starting Weight:  105.6 Kg
Ending Weight:  103.0 Kg
Water Removed:  2.60Kg
24 Dec 13
Starting Weight:  106.4 Kg
Ending Weight:  103.0 Kg
Water Removed:  3.40 Kg

27 Dec 13
Starting Weight:  107.8 Kg
Ending Weight:  104.8 Kg
Water Removed:  3.00 kg
30 Dec 13
Starting Weight:  109.2 Kg**
Ending Weight:  104.9 Kg
Water Removed:  4.30 Kg
**My December 30th weight is high because of an unfortunate accident I experienced on Christmas night. Long story short--I hit my fistula directly on the top button hole causing massive swelling of the lower arm and LOTS of pain, too.
So, I went to do dialysis on Friday, and after 30 minutes of trying, were finally able to canulate both button holes. Unfortunately, the many attempts at the top button hole resulted in additional swelling and bruising at that site.
On Sunday--an unusual day for dialysis; due to Christmas scheduling--the Techs failed to canulate the top button hole after forty five painfully agonizing minutes. So, I called a stop to the attempts, and I came back in on Monday afternoon (yesterday) so the Head Nurse could work with me to get the canulation.
Anyhow, because of the extra day between treatments, my weight increased 1.5 Kg's higher than it was on Sunday morning (107.6 Kg at the time). Also, because of this, I'll be playing catch-up with my weight for a week or so.

Other than the whole bruised arm thing, my weights remain fairly consistent. I attribute this to my keeping close track of my liquid intake from day to day. Again, I don't know exactly how much I drink every day; rather, I keep a very good approximation. My aim is about one liter of fluids per day.

Back to the dialysis issue...
Yesterday, the Tech initially tried to do a Sharps (a sharp needle, instead of the dull needles that are used for button holes) below the top button hole. However, due top edema, hard tissue and pain, she was unable to get the stick. The Head Nurse was called in. He tried the button hole, but without success. He then used a Sharps even lower on my fistula. Even then it took a bit of fishing around for him to canulate the vein. We'll be using this site for a few treatments to give the button hole a rest, and to allow some of the swelling to reduce. Depending on the condition of the button hole, we will abandon it, or go with the new site. I'll let you know how that ends up.
After he had gotten the stick, the nurse spoke to a doctor about my arm. He was concerned about a possible infection because of the amount of swelling (edema), the hardness of the tissues, and the amount of pain I was experiencing. The doctor prescribed a round of Ansef--an antibiotic--that would be administered in two doses (3 grams yesterday--at the end of Tx--and two grams on Thursday. This should eliminate any infection risk. I'll keep you updated.

I have been experiencing a lot of nausea the past couple of weeks. It usually hits suddenly and is quite intense. I have been trying to combat this sudden onset nausea with a regimen of Tums, followed by Promethazine. This is usually successful. Additionally, since coming home from the hospital, I have been having to eat something every two hours or so. If I don't, the nausea increases to nearly untreatable levels and I am miserable until it declines. So, not much fun there.

Any headaches I get now are entirely TMD related. I can go two or three days between headaches. When I do have one, I pop in my TMD devices at night, and awaken without a headache once again. Ahhhh....life without a 24/7 headache...Love It!!!  :o)

Remember my Phosphorous spike following surgery? Well, after using the new regimen for the binders (Renvela), in just a week and a half I was able to lower my phosphorous by 1.50, going from 8.1 down to 6.6. If I keep that up, my phosphorous levels will be right where I want then to be; in the 4.2-4.8 range.
Speaking of Labs, my next draw should be early next week. I'll post the monthly results when they are available.

That's all for today. However, I will be posting records from my recent hospital stay later this afternoon; so be looking for them.

Have a safe, fun and festive New Years Eve! May 2014 be even better than the year we just finished!

Good Health, and Good Fortune to All!

HAPPY NEW YEAR!!!  :o)

ScottW

Merry Christmas 2013

MERRY CHRISTMAS, Everyone!

May this Christmas day of 2013 find you as blessed as I am!

And may your day be filled to overflowing with family, food gifts and an abundant Spirit of Charity and Goodwill.

MERRY CHRISTMAS!

18 December 2013

I know it's been a bit since my last entry; all I can do is claim tiredness due to post-surgery recovery and dialysis. So let's get going...

Dialysis Weights:

07 Dec 13
Starting Weight:  106.6 Kg
Ending Weight:  103.3 Kg
Water Removed:  3.30 Kg

10 Dec 13
Starting Weight:  107.0 Kg
Ending Weight:  103.3 kg
Water Removed:  3.70 Kg

12 Dec 13
Starting Weight:  105.6 Kg
Ending Weight:  101.1 Kg   (Yeah, you read this one correctly!)
Water Removed:  4.50 Kg

14 Dec 13
Starting Weight:  104.3 Kg
Ending Weight:  103.4 Kg
Water Removed:  0.90 Kg  (This one, too!)

17 Dec 13
Starting Weight:  107.3 Kg
Ending Weight:  103.1 Kg
Water Removed:  4.20 Kg

As I expected, my weights are falling in line with my plan. My voluntary fluid restrictions are definitely helping and are working in my favor. I have NO fluid in my lungs, my heart is clear and I have NO untoward edema anywhere.

Following surgery, my surgeon instructed that I NOT use Heparin during dialysis for six weeks post-surgery. Heparin, a blood thinner, is used to help keep the lines from clotting during dialysis. Unfortunately, Heparin can cause severe internal bleeding in a surgical patient; hence the restriction on its use for a month and a half.
Instead, I am having three things that help my blood to flow smoother...1) A Saline drip at a rate of 100 cc's/hr.  2) Using the dialysis fluid Citrasate 2.5 instead of the regular Dialysate fluid.  3) A Saline Flush of the lines every hour and a half.  
Any additional fluids used in this process is added to my daily goal so that no additional fluids--above my goal loss--is taken.
So, as of this writing, I have five more Tx's to go until I can use the Heparin once more.
The lines still clog occasionally, and when they do, the techs switch out the lines as quickly as they can and get the Tx up and running again within ten minutes or so. Only once have I clotted the lines so badly that all the tubing had to be changed and the machine re-primed. That one set me back about half an hour. But again, this has only happened once.
Now, you may be asking why battling the clotting is so important. Well, the short answer is that keeping the lines flowing smoothly assures that my heart or my lungs (or both) will not be the unfortunate recipient of a nice blood clot, thereby avoiding a heart attack (AMI) or pulmonary embolism. Kinda important!

My first post-surgery labs were pretty much as everyone expected:

*Albumin (21 Nov):  3.70 g/dL (-0.70 g/dL from 22 Oct)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (03 Dec):  8.60 g/dL  (-2.90 g/dL from 05 Nov)
  (A Measure of Anemia)

*Ca Corrected (03 Dec): 9.20 mg/dL (-0.50 mg/dL from 05 Nov)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (07 Dec):  8.10 mg/dL (+3.30 mg/dL from 05 Nov)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (21 Nov):  157 pg/mL  (+15 pg/mL from 22 Oct)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (21 Nov):  4.3 mEq/L (+0.10 mEq/L from 22 Oct)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (03 Dec): 1.39   (+0.06 from 05 Nov)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher

The Hemoglobin drop and the Phosphorous spike are both to be expected following surgery. The real surprise was the K+ (potassium). This normally spikes after a nephrectomy, but it me, it stayed level. Even the surgeon was surprised by this one.
For the phosphorous, I am now taking 3 Renvela Binders with every meal (up from one), and one binder with any snacks (up from none). Plus, I am being more cautious than ever with phosphorous intake. Between the two, we should be seeing a drop in that phosphorous number very quickly.
As to the Hemoglobin drop, this will simply take time to rebuild within my body. The Epo shots and my daily intake of the dialysis vitamin will take care of this one.

So how am I doing at this point?

-Well, I am only wearing the abdominal binder when I go out of the house. Another couple of weeks and I should be comfortable enough to stop wearing this at all.
-My energy is still lousy. (Not unexpected.)
-Most of the scabs on my new scars are gone. (The scars really don't look too bad when they aren't red and swollen!)
-My body continues to adjust to not having kidneys.
  I finally had a normal BM (bowel movement) about a week ago. As of now, my BM's range from normal to soft. (At least I'm no longer sitting on the toilet ten plus times a day!)
  -There is still abdominal pain bilaterally which flares up if I over-do things.
  -My sleep is not consistent. It's not bad dreams...I'm just having a hard time staying asleep; which, of course, leaves me tired all the time.
  -The neuropathy in my feet is still present. I had hoped this would go away once the kidneys were out--and it still may once all the swelling from surgery is gone. I continue to see my chiropractor to help this.
  -The weirdest thing I have to report is that whenever I have a BM, my urethra tries to push out the now non-existent urine via the normal peristalsis motion--which is a normal function of the body. Since no fluid is expelled, I am left with those waves of peristalsis within the urethra. It just feels weird and is something I wasn't expecting.
  -My stomach is having an issue with going from hungry to painful hunger pangs within just a couple of minutes. This impacts my ability to eat normally, and is an unexpected adjustment to my daily routine. I can ignore the pangs to a degree; but have to either eat--and be miserable while doing so--or take a regimen of Promethazine (anti-emetic) and Tums to combat the inevitable nausea.

All in all, I am very pleased with my progress post-surgery. Healing simply takes time. Add in the gunk that was systemically in my body due to my kidneys, and that time frame will
further expand the recovery time.

I told you before that I have the pathology report from the surgery, and I am going to put that on here, along with a couple of other things. I have a technical issue on my end that is keeping me from getting this done. As soon as I have it worked out, I'll get those things posted.

Until then, have a great week! Keep your countenance bright, and remember those who have less this Christmas season.

Good Health to All!

ScottW

06 December 2013 (Part 2)

As stated in the first part of this post-Op blog, the first day was a blur, but the second day was far better.

In the late morning a Physical Therapist came in and informed me that I would be walking. After reviewing the proper way to get up (and back down), I was assisted to my feet and we began a short walk into the hallway. Walking certainly didn't feel good, but I have been through far worse; so from my perspective, it was relatively easy. In all that day, I took three walks; each one with increasing distance.

On that second day I finally got to see my abdomen when the nurse came in to change the bandages. The first thing I noticed was that I had five new holes in me. Two from the Lap sites, the actual incision, and two holes from which drain tubes extruded. My abdomen will never be the same...not that it's been much to look at since two previous surgeries years ago. Anyhow, here are two pics of how my belly looks following the nephrectomy:


Following my Radical Double Nephrectomy on 15 Nov 13, you can easily see the surgical incision and the two Laproscopic Inserton sites. The drainage ports (not visible here) are just above the pelvis on either side.


 

A Close-up of the incision, showing the staples used to close the site.
 

The surgeon came in that day to explain how everything went. In short, the surgery went better than expected. There were no issues removing the kidneys, the hernia was significant, but was also accomplished with little issue. In all, the nephrectomy was a huge success!

On that second day I was not allowed to eat; chewing on ice instead for both food and water (yippee!). The two drains were emptied several times. The first time both were full of a purplish, nasty-looking fluid. As the drains were progressively emptied, the fluid went from that purplish to a normal crimson red. The drains tubes were for any left over gunk from the kidneys to have a way to exit my body. I don't know if this is a standard Tx, so be sure to ask your surgeon if these will be placed in your procedure.

The rest of the second day was unremarkable as things went in a continuous round between sleeping, walking, dressing changes (and drains emptied), vitals, deep breathing exercises, etc. I also had my first in-hospital dialysis Tx that evening. Everything went well, and the session lasted my usual four hours.

Sunday (two days post-Op) was another day of the same. Aside from a few visitors, the day was pretty much the same as Saturday.

Monday was definitely better. I was walking around unaccompanied, my deep breathing exercises were way beyond normal, the O2 I was on was finally DC'd, my pain meds were reduced [due to my progress], and the surgeon took me off ALL HBP meds! No more Atenolol or Gemfibrozil--Woo-Hoo!  :o) That's another 27 pills every week that I DON'T have to ingest!
Also on Monday, the drain tubes were getting very little out anymore, so the decision was made to Extubate them (take them out). I asked the nurse if this would hurt, and was told it would just feel weird. Well, as the first tube (on my L, I believe) was removed, the foot of tubing inside of me came out with both pain and a really weird sensation. Luckily, the removal was quick, and the sensations only lasted about five seconds. Once the L was done, the nurse move moved around the bed and extubated the R tube. When she was done, the holes were small enough that they would close on their own, so no dressing or anything was needed on either site.
I also had my second in-hospital dialysis Tx on Monday evening. This session also went well; aside from the lines clotting because I can't yet use Heparin to thin the blood.
You see, Heparin cannot be used post-Op due to the high risk of internal bleeding at the surgical site(s). So, a saline drip is used [during dialysis] to compensate. In spite of the saline drip, the dialysis tubing will often clot anyhow, and all the lines will then need to be changed and flushed to avoid it happening again.

That evening my feet began to have that intense neuropathy feeling, but with greater intensity than I've ever felt it before. Basically, both of my feet felt as if they were on fire. The sensation was so intense that I got almost no sleep that night. The nurse had no answer, nor did the docs, so I just put up with it and planned on seeing my Chiropractor as soon as I could.

Tuesday (four days post-Op) was the day I'd be going home. Thank goodness, too! I was bored to death, the bed was uncomfortable and I knew that I'd done as much healing at the hospital as I could. Time to go home. After speaking with the Surgeon, the Respiratory Therapist, the Physical Therapist, the Nutritionist and the Staff Nephrologist, I was given the OK to go home.

My time at the Intermountain Medical Center was great! The entire staff, from the surgeons on down to the nurses aids was absolutely the finest hospital staff I have ever been around! I cannot say enough praises about my experience in that facility. What a phenomenal decision it was to have the nephrectomy there! I also learned that the staff I had will be the same ones I will have when I get my transplant. They are specifically trained for transplant and associated patients; which is why they were so darned awesome during my stay. When my transplant occurs, I'll be on the same floor, as well.

Anyhow, before going home I had my bandages changed, and a fresh abdominal wrap was put on me.

Abdominal Wrap used following Nephrectomy, Nov 2013

The abdominal wrap is used to stabilize the abdomen for greater patient comfort, as well as to hold any bandages in place. I would have to use this 24/7 for one week, then I could remove it at home, sleeping without it--if comfortable--after that. However, any time I go out, I must wear the wrap for at least six weeks. Once home, I opted to wear a regular undershirt under the wrap to reduce chaffing on my skin which, by the time I was home, was already happening in several places on my chest, back and sides.

Back to going home...
The paperwork took some time to navigate all the needed channels, but once given the go-ahead, the nurse removed my IV, went over after-care instructions with me, gave me some backup supplies, and I was then discharged. Only four days post-Op and I was going home!

Once home it certainly wasn't a picnic, but at least I wasn't bored, and I could eat whatever I wanted...BONUS!  :o)

In the time since returning home I have been to dialysis seven times. Here are all the weights:

21 Nov 13
Starting Weight:  107.5 Kg
Ending Weight:  104.7 kg
Water Removed:  2.80 Kg

23 Nov 13
Starting Weight:  107.7 kg
Ending Weight:  104.7 Kg
Water Removed:  3.00 Kg

*Thanksgiving Schedule
25 Nov 13
Starting Weight:  107.0 Kg
Ending Weight:  104.2 Kg
Water Removed:  2.80 Kg
27 Nov 13
Starting Weight:  107.1 kg
Ending Weight:  103.7 Kg
Water Removed:  3.40 Kg
30 Nov 13
Starting Weight:  108.9 Kg
Ending Weight:  105.0 Kg
Water Removed:  3.90 Kg

03 Dec 13
Starting Weight:  107.9 Kg
Ending Weight:  103.7 kg
Water Removed:  4.20 kg

05 Dec 13
Starting Weight:  106.2 Kg
Ending Weight:  103.4 Kg
Water Removed:  2.80 Kg
Now that I have no kidneys, retaining water is a HUGE issue. Though I haven't yet been told to do so, I have voluntarily reduced my fluid intake to about 36 oz per day; or, about one kilogram. I can eat any solid foods I want--well, within the dialysis diet--but I must watch the fluids. So, I've actually been measuring fluids, finding out what one cup of pebble ice equals in water (about 5 oz's), and keeping track of my intake throughout the day. It's really not hard to do; but I have weight goals that I intend on meeting with each subsequent dialysis Tx.
Like I've stated before, I want to be as healthy as I can be going into my transplant so that I have the very best chance coming out the other side to live a long, happy life. All it takes is self-discipline and making the decision to do what needs to be done every day.
I must choose what is more important--my long-term health--or--a temporary desire to eat whatever I want and drink as much as I want; and to take my meds, follow doctor instructions, etc. Hmmm...
...I choose my long-term health. For me, it really IS as simple as that. And it's a no-brainer, if you ask me!
If you are going through anything similar, I strongly encourage you to ask yourself, 'what it is that you want at the end of all of this?' Be honest with yourself. If you choose to continue living a lifestyle that is detrimental to you, then so be it. There are natural consequences to such a decision, which you must live with. That's fine; it's your choice.

However, if you choose to be healthier, then decide what it is you must do to achieve that and then go do it! Attitude, eating habits, fluid intake, Rx dosing, physician instructions, etc...do what you've got to do.
(Alright...enough of the soap box lecture...)

At dialysis I am still going four hours per Tx. This may yet change; but as long as I control my fluids, and my labs come back looking good, the time-on may not change at all. I will keep you updated.
Now that my kidneys are gone, I am getting injections (via-IV) of Epoetin with each Tx. Epo, as it's called, is a naturally occurring glycoprotein hormone that helps the body to regulate production of Red Blood Cells and Hemoglobin. The kidneys produce this hormone; so without it, cascading anemia is a real threat and will cause major issues if not addressed.
Also, I will continue to do the saline drip with each Tx for about six weeks post-Op. This has already resulted in a number of clotted lines; but if the lines are flushed about every hour and a half, clotting is reduced.

My first time back at dialysis--about six-days post-Op, I have a number of patients and techs all tell me how much better I look. Here's a pic of me I just took:

Three weeks post-surgery. 06 Dec 13

I saw my surgeon yesterday and had the staples removed. There are now just steri-strips over the incision and lap sites. These will remain in place for about a week. Once they start falling off I can just peel off the ones that are ready. Unless something untoward happens, I won't see my surgeon again until I get the transplant. 
My surgeon also enthusiastically told me how good I look, and that I seem to be doing "far better that expected." (I'll certainly take that news!)

So what's left?
Well, a few more weeks of healing, is all. My surgeon told me to call Mayra, my Transplant Coordinator, at the end of December to report how I'm doing. The Transplant Committee will then decide to place me on the Active List, or not. I'm hoping for placement as soon as possible!
After that, I'll get a letter from UNOS (United Network of Organ Sharing), the national entity that oversees organ placement/matching, stating my status and provide other info. Then, it's a waiting game.

So what's changed since the surgery?

First--and foremost--my Four Year-Long Headache is GONE! (Finally!)

--That overwhelming flu-like feeling is GONE!

--All the back pain from the cystic kidneys is GONE!

--My Energy Level is already Increased!

--My Skin Color/Tone is Better!

--My Mental Clarity is Increasing!

--My dreams are better and better! (No more bad dreams, so far.)

--That goop that was circulating throughout my body is GONE!

Not bad results at three weeks post-Op!  I think pretty much anyone would be ecstatic with these results...I know that I am!

I know I've probably missed a few things, but I've spent a few hours writing this up and am done! I'm tired, my abdomen is sore (from sitting up constantly) and I'll be going now.

I did pick up the surgical and pathology reports yesterday--no pics, sorry!--and I'll put them on my next blog.

As always, if you have any questions or comments, please let me know. I'll respond as soon as I can.

Until the next time...

Good Health to All!

ScottW

02 December 2013

I am finally feeling up to writing my surgery report for you. The medical records I want have not yet arrived; but as soon as I have them, I will share those with you as well. For now, let's just go with the things I recall...

My surgery time actually got bumped due to a transplant that came up. Instead of an 0800a time, it was at 1200p. I arrived at IMC (Intermountain Medical Center) at 10A, did the final Registration paperwork, and was taken back to pre-Op, where I changed into the hospital gown, Full-Leg Compression Socks (for post-op clot prevention), got an IV placed, turned in my Living Will to a Hospital Legal Rep, and then awaited transport to the OR.

 

Ready and Awaiting IV in Pre-Op (15 Nov 2015)



Heading to see the Anesthesiologist...and the OR. (15 Nov 2013)



 



Outside the Operating Room, I met with the Anesthesiologist. We discussed Rx allergies and what he was going to do once I was inside the OR. After that, I was wheeled into the OR, transferred to the OR table, positioned and then heard the Anesthesiologist say he had injected my IV line and then I was out.

I drifted in and out post-surgery for hours. Apparently, I awoke enough once to tell my wife, "Not as bad as the back surgery." This is referring to the horrific pain I woke to following my L5/S1 hardware fusion back in 2000. My wife was a wreck for days after seeing the intolerable pain I was in. So, with my brief message about a low pain level, she was able to relax and didn't worry about me so much.

Although I don't remember giving that message, I do remember waking up every so often, but sleeping solidly once again. At about 930p, I finally was able to stay awake enough to remember things. The most prevalent memory was pain. I was being given Fentanil, but it was doing very little. I asked about Morphine, since it always works best on me--and I'm not allergic to it! The answer I received resulted in a big, "Ahh, got it!"
You see, Morphine is metabolized in the kidneys and, seeing that both kidneys were now gone, the drug would have zero effect in reducing pain.

However, with the inability of the Fentanil to do the job, that drug was DC'd (discontinued) in favor of IV Dilaudid. It still wasn't great, but it reduced the pain enough for me to be comfortable. This Rx was used until I went home.

The first night post-surgery was a very long night. Not only was I not able to sleep much, but there was a steady stream of medical personnel coming in all night, as well. Labs, Vitals, Respiratory Therapy, Meds, Nurses, Nurses Aides, etc...it really did seem non-stop. With everything going on, I literally got about an hour of sleep from 930p through about 11a the next morning. I was exhausted, to say the least.

On day 1 post-OP I was up and walking.

---Alright...that's all for this entry. I've already fallen asleep twice, so I'd best be going.
I'll write more on Wednesday.


                                    ***************End, Part One***************

ScottW

A Quick Update

After two weeks post-surgery, I still am not up to writing a long blog about everything.

For now, suffice it to say that the surgery went well, and my recovery is progressing on pace.
Hopefully, I'll be up to getting the blog written in a few days.

Thank You for all of your prayers!

ScottW

An Awesome Piece of News!

Going into something such as a surgery, it is always highly important to know that everything is set up with insurances, notifying your various doctors regarding the procedure, keeping your dialysis center in the loop as to your anticipated days to be missed, etc.

In doing this all week, I still hadn't heard back from the surgeon's office--or the hospital, for that matter--as to whether or not the surgery would be covered. I have been preparing for everything as if things will naturally move forward anyway. All my pre-screening (online) was done, my pre-registration was done, etc.

Then this afternoon, I received two calls that were great news, then awesome news. The first, from the surgeon's office, was that the Double Nephrectomy was covered. Like I said, Great News!
The second, from the hospital, told me that not only was the surgery and hospitalization given the go-ahead, but that my yearly out of pocket had been met (because of dialysis) and everything associated with the surgery (the OR, Docs, OR staff, and all hospitalization costs) were covered 100%!

AWESOME NEWS!

What a complete relief this was to hear!
That is one humongous worry off my shoulders!

So, just one day to go...
...one more day of decent liquid intake...
...one more day of actually urinating... (I know, a bit gross, but very true!)
...One last day that brings me so much closer to transplant!

Do I come across as excited?  ;o)

It's still a weird place to be, mentally; being excited to lose two of my vital organs. But, getting them out will be a huge relief! Less pain, less nausea (I hope!), being comfortable in any position, reduced headache (again, I hope!). What's not to be excited about...under the current circumstances, of course. :o)

Lastly, today, my wife skipped out of work in order to take me out on a date before the surgery, and the weeks of recovery that will follow. We went to see a movie ("Enders Game") and the out to eat, followed by a few errands. The whole point was to just spend time together, getting our minds off the surgery for a few hours. It was a nice afternoon. I'm very glad we did that! 

Anyhow...that's it. I most wanted to [pass on that awesome news!

So, I will write you once again on the other side of all of this.

Until then, Be safe, keep those smiles going, retain your good thought,
and most of all...

Good Health to All of You!

ScottW

11 November 2013

Alright...

Unless I have any vital news, this will be my last entry until after I get home from the double Nephrectomy and resultant hospital stay.

Latest dialysis numbers:

07 Nov 13
Starting Weight: 106.0 Kg
Ending Weight:  103.9 Kg
Water Removed:  2.10 Kg

09 Nov 13
Starting Weight: 105.7 Kg
Ending Weight:  104.0 Kg
Water Removed:  1.70 Kg

(I'll add in the next two days as they happen)

12 Nov 13
Starting Weight: 
Ending Weight: 
Water Removed: 

14 Nov 13
Starting Weight: 
Ending Weight: 
Water Removed: 

As of this entry (11 Nov), my weights continue to look awesome. I know this will change once the kidneys are gone; and adjusting will take place. Hopefully, I will master the weight before too long so the swings between pre and post weigh-ins won't bee overly big. You know I'll do my best, no matter what!

I had the monthly labs drawn last Tuesday. Here are the results:

*Albumin (22 Oct):  4.40 g/dL (-0.10 g/dL from 17 Sep)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (05 Nov):  11.5 g/dL  (+0.30 g/dL from 15 Oct)
  (A Measure of Anemia)

*Ca Corrected (05 Nov): 9.70 mg/dL (Unchanged from 08 Oct)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (05 Nov):  4.80 mg/dL (+ 0.2 mg/dL from 08 Oct)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (22 Oct):  142 pg/mL  (-19 pg/mL from 17 Sep)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (22 Oct):  4.2 mEq/L (+0.30 mEq/L from 17 Sep)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (05 Nov): 1.33   (-0.05 from 08 Oct)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher

All in all, another great set of labs. The PTH has gone low...again. Not unexpected, though. This will likely rebound on its own. The dialysis filtering lost a little effectiveness, which is likely due to the deteriorating condition of my kidneys. This too will be corrected soon enough.

The headache has increased its intensity once more. It has risen from about 6.0 to a solid 9.0 within the past four days. I don't mind, though. It was decreased while I dealt with the latest dialysis infiltration, which I am very thankful for. Again, I am hoping the headache will go away once my kidneys are out. Now, don't be surprised if it isn't. I'm assuming there are long-term TMD issues involved due to tension throughout my body from the pain and discomfort I am constantly in. Assuming that is the case, it will take time post-surgery for my body to relax enough for that muscular tension to subside. I've been through that reduction before.
It would be fantastic if the headache was gone right away; but I'm also prepared that it may just take time. In the event the headache doesn't go away at all--even in the long run--, then I'll just keep doing what I'm doing, dealing with it for however long it stays. It's not like I've never been there, either! In either case, let's all hope for a successful elimination of the now four year long headache.

I had the required labs drawn today, ahead of the upcoming surgery. I just went to my local IHC hospital to do this. There were only three vials of blood drawn for these tests. The tests being run include a CBC, PTT and...one more that I don't remember. They are looking for Antigens, K+ level, etc. The biggest concern for the surgeon, as I explained in an earlier entry, is the K+ (Potassium). If it is too high, the surgery will be delayed. Luckily, as evidenced by my monthly labs, my K+ is in terrific shape, so this should not be an issue.

My dreams this past week have been leaning towards loss of control. This isn't at all unexpected because of the surgery. It's only natural for the subconscious to be trying to process any fears, trepidations, etc. ahead of such a procedure. If you are going through anything similar, be ready for possible bad dreams leading up to the surgery. Again, as I've stated numerous times before, find an effective way to combat the dreams. I have my own way--which I've explained previously--and I can easily get rid of them so that I control the dreams, and any fears are eliminated. Not everyone can do this; very few people, in fact. So find what works and use it.
I've been through surgery three previous times. There really isn't anything to be afraid of. And waking from the nephrectomy will NOT be as horrific as waking from my back surgery; so why should I be afraid?
IF something goes wrong and I end up losing my life, I'm still not afraid because of my faith in our Heavenly Father and knowing, without a shred of doubt, that I will be in a far better place, should something happen. So, why be afraid?
If you find yourself in anything similar to what I am going through, and you have any faith in your religion or God, then lean on that heavily, and you will do better than you think!
I know...I've been doing that for over four years now. You all can see that I'm not depressed, hopeless, etc. I stand as tall as I can, look forward to a productive future, plan ahead for what I'll be doing after transplant, and carry a positive attitude wherever I go, in whatever I do. If anyone wants to dispute the why of it, they can try to convince me otherwise; but I will never waver in my convictions and belief. I've seen to much, experienced too much, to consider otherwise. So carry your faith through whatever storm besets you and know, without doubt, that all will be well!

(I didn't plan on talking about all that, but I'm glad I did!)

I filled out my Advance Medical Directive this afternoon. This is necessary for the next two surgeries (nephrectomy and transplant) in case of something going wrong and my life ends up in danger. Considering my overall health--aside from the two ugly, nasty, dying kidneys, of course!--I really am not worried that anything will go wrong. However, just in case, the Advance Directive must be filled out so the medical staff will know my wishes, and my "Agent" (my wife) will be able to make decisions for me in case I am unable to. Anyone going through a similar surgery will need to fill out such a form.
When that time arrives, look at the issue head on. Avoid putting off the form and you will be unspokenly giving the hospital and physicians permission to do what they want, instead of what you want in the even of some catastrophic event while in surgery, or the recovery. So please, face the issue, fill out the form, and take it with you to the hospital!
It's for YOUR benefit that this is done ahead of surgery.

Well, that's all I've got for today. Like I stated earlier, if something important comes up, I'll make another entry before the surgery. If not, then have a great week or two--until I return--and keep me in your thoughts and prayers for a successful surgery and recovery.
Thank you, once again, for all of your support, in whatever ways you may give it. Every effort is both felt and appreciated!

See you on the other side!

Good Health to You All!

ScottW

06 November 2013

A difficult week since last Wednesday.

Here are my dialysis numbers...

29 Oct 13
Starting Weight:  106.8 Kg
Ending Weight:  104.0 Kg
Water Removed:  2.80 kg

31 Oct 13
Starting Weight:  106.4 Kg
Ending Weight:  103.9 Kg
Water Removed:  2.50 Kg

02 Nov 13
Starting Weight:  106.3 Kg
Ending Weight:  103.9 Kg
Water Removed:  2.40 Kg

05 Nov 13
Starting Weight:  106.0 Kg
Ending Weight:  104.1 Kg
Water Removed:  1.90 Kg

Weight-wise I am continuing to do great! I have no concerns here, at this time; although, once my kidneys are out, I'm sure this will change. I'll have lots of learning and adjusting to do once more. I'll write it all down for you, though. :o)

What's made the past week rough is two-fold.

First, on Saturday--at dialysis--my proximal button hole (closest to my heart) was extremely resistant to venipuncture. Three techs and one nurse couldn't get the stick. After consulting with me, it was decided to try a Sharps needle and bypass the button hole. Well, they got the stick...but then it infiltrated into the surrounding tissue, causing a good amount of fluid to leak into the tissue, creating a really nice, prominent hematoma directly underneath the button hole.
Well, the Sharps needle was removed and the button hole was attempted once more. And then...Voilà! The venipuncture went right in! Unbelievable!
In total, it took thirty minutes to get that top button hole stick. The techs were gob smacked as to why the original stick wouldn't go in, but the later one did. There really isn't any explaining it; it's just what happened. I certainly wasn't upset because it was my vein that was causing the problem. I just made sure to have lidocane injections at the site as they concurrently wore off, and my arm was becoming more and more painful from all the fishing around.

So, I had an ice pack on that hematoma for the duration of the Tx; which, by the way, progressed uneventfully. Later that evening, as I was taking off the bandages, the top site--where the hematoma was--bled profusely. I immediately applied pressure, got a clean 4x4 and medical tape and applied the bandage as rapidly as I could get it on.
I ended up leaving the bandage on until Sunday afternoon; just to be sure.

So, all weekend, I had the pain of an evolving hematoma getting worse and worse on top of feeling completely drained of energy, and my kidneys causing extensive and increased bilateral flank pain. About the only thing that wasn't adding to all of this was the headache. It was staying fairly consistent and decreased...thank goodness!

As far as the lack of energy, it was the worst stretch of days that I can remember. It is so difficult to accurately describe what being completely drained of energy feels like. You have no oomph to get anything done, you don't want to shower (which, I did do), you don't want to eat (I didn't, all day), you're just sort of there. Not much conversation, you don't enjoy anything on tv--you just watch to pass the time. Does that help? It's how I felt all day Sunday. It wasn't a fun day.
Monday was better. I got some housework done, did the cooking and a few other small things. At least I wasn't having a miserable day again.

Like I said, the bilateral flank pain was terrible over the weekend, too. Even sitting in my big, comfy recliner did absolutely nothing in helping to alleviate the pain. The T3's I took didn't touch the pain. I was constantly shifting positions all day; constantly fidgeting in an attempt to distract my brain from the terrible pain. The same pain level continued Monday, and is still present as I write this entry. It is unequivocally time to get those cyst-filled/covered kidneys out. Who knows what all that cystic fluid is doing to my body? Whatever effects that gunk is having throughout my body, it certainly can't be good!

The good news in all of this is that I ate again on Monday, once my energy had risen a bit.  Keeping food down is not a problem.

I don't know if the sudden increase in symptomology is the result of my knowing the surgery is coming up and I can therefore let down a bit, or if the increase of pain and other symptoms is actual and merely coincidental to the news of the impending surgery. In either case, the symptomology is happening. I am just concentrating on the fact that in [now] eight days, my kidneys will be out and I'll be comfortable once again, and my energy will likely rise. That thought is what is helping me most, right now.

At yesterday's dialysis I went without the lidocane cream, opting instead to do lidocane injections due to the hematoma surrounding the fistula. Even with the injection, the sticks were both painful. During Tx the proximal needle was having pressure issues and the needle had to be manipulated. Every movement of that needle cause increasing pain because of that injured tissue. It was NOT a fun experience! I also kept an ice pack on the hematoma once again.
With what has been progressively happening with the proximal button hole, we'll likely try to establish a new site. However, with my surgery right around the corner, I'm going to hold off on that until sometime after I'm home from the hospital.

So, there you are...now you understand why this past week has been so trying.

Everything else is going OK. The headache is down a bit, not too intense. My appetite (aside from Sunday) is decent. My R jaw continues to improve since the dental work, causing less and less pain. I haven't had any diarrhea in weeks. My dreams are good and in my complete control. And I am excited about my future! So really, overall, things are going pretty well, I suppose. Things are finally getting towards Transplant, and my future is opening up before me once more.

Anyhow, I think I've gone over everything. This entry was definitely both for everyone else, and for me, as well. Thanks for listening...

I will make at least one more entry before the Nephrectomy. Once I go into the hospital, it will likely be at least a week--possibly two, or longer--before I write another entry to talk about the surgery.

So, until next week...

Good Health to All!

ScottW

 

Surgery News!

FINALLY...

The date is set...

November 15th

         will be the day I have the double Nephrectomy and get my hernia repaired.

I met with the surgeon this morning at the IMC (Intermountain Medical Center) Campus.
To start I did extensive paperwork (Hx, Rx's, etc), followed by the surgeon coming in and going into detail about the surgery itself, and answering questions.

I have to go in to the hospital a few days prior to the surgery to have labs drawn. The surgeons need to check K+ levels (potassium), antigen count, CBC, etc. The testing will be extensive. IF my K+ is too high, the surgery will be delayed as excessive K+ can cause major cardiac events during a surgery--a VERY bad thing! Being on dialysis, my K+ levels are good on a consistent basis, so this shouldn't hold up the surgery.

Another factor that might potentially delay the surgery is if the surgeons have a transplant come up that morning. If that's the case, we'll just reschedule. I certainly won't begrudge another patient getting a transplant!

As far as dialysis; I'll do my regularly scheduled Tx's on Tuesday (12th) and Thursday (14th), followed by the surgery on the 15th, then do an in-hospital dialysis on the 16th (possibly on the day of the surgery, depending on my K+). After that, I don't know. It will just depend on my daily labs. Once I get home, my dialysis Tx's will return to the same schedule (545a Tues/Thurs/Sat).

The surgery itself will present possible complications such as bleeding, infection, blood clots, stroke, etc. One of the things the surgeons will do to lessen possible infection will be to extensively irrigate the area around the kidneys once they have extracted the organs. All the icky, discolored fluid in the cysts can apparently be quite nasty on the body if it is not irrigated out.
There is always the possibility that the surgery could go from laproscopic to fully open, due to any unforeseen issues they encounter during the procedure. Let's hope that all goes well and this is not necessary!

When the kidneys are being extracted the surgical team will roll me on one side (say the R), puncture the cysts and kidney, take out the L kidney, clamping the artery, veins and ureter; then roll me onto the other side and do the same to the R kidney. Once all the irrigation is finished and on the way out, the surgeons will repair the hernia under my navel (belly button) just before closing up.

I will then be a guest of IMC for 3-7 days, depending on how I am doing.

So, there you have it! I've been waiting a long time for this day, and it is but two weeks away! It's really a weird place to be, mentally...getting excited to have two of your seven vital organs removed. But, after the last six months, I am way past ready to get them out! I was telling the surgeon about the sharp pains I had the other day--I talked about them in my last entry--and he just shook his head and said, "It's definitely time to get them out if you can feel the cysts popping!"

If you have any questions, please feel free to leave them in the comments. I will answer as soon as I am able.

Good Health to All!

ScottW

28 October 2013

Time to catch up!

As always, let's begin with the most recent Dialysis Weights...

19 Oct 13
Starting Weight:  106.7 Kg
Ending Weight:  103.9 Kg
Water Removed:  2.80 Kg

22 Oct 13
Starting Weight:  106.3 Kg
Ending Weight:  104.0 Kg
Water Removed:  2.30 Kg

24 Oct 13
Starting Weight:  106.0 Kg
Ending Weight:  104.0 Kg
Water Removed:  2.00 Kg

26 Oct 13
Starting Weight:  106.4 Kg
Ending Weight:  104.0 Kg
Water Removed:  2.40 Kg

Consistency is once again the name of the game! This is achieved, of course, through diligence in eating properly, drinking less fluids and the fact that I still product urine--a soon to be non-factor.

Anyhow, for any patient of chronic illness, the key is simply to follow the doctors instructions, follow Rx regimens, and take care of yourself as best you can. (I know I really hammer that point; but I hear so many patients go on about doing what they want, then wonder why they feel worse than they should, or go into dialysis too heavy, with too much blood sugar, etc. Just...STOP making excuses and do as you are instructed!

This last week I also had my yearly Davita Dialysis Evaluation. I was given complete labs (see below) and interviewed as to my current health, the benefits of dialysis (and drawbacks) and my level of patient care received. I gave the staff of my clinic glowing reviews, and expressed my sincere appreciation for everything they do for me!
Here are the labs:

 

 

All of my complete lab results appear to be in line with where I am at physically. There really aren't any surprises, one way or the other, from what I see.

The day I have long been waiting for is here on Wednesday. I see the surgeon to schedule my double Nephrectomy. I am hoping to be able to schedule the surgery for sometime on the week on 11 Nov. That would work best for my wife's schedule and the upcoming Thanksgiving holiday. Plus, it would mean I only have a couple more weeks to tolerate this awful back pain. I'm also going to ask for any pictures, video, etc. the surgeons might take. I want to see these things that are inside of me! I also am going to request a copy of the pathology report from the kidney exam. I'd love to post these things on here!
Of course, I will take notes and tell you all about the consult!

While we're on the subject of back pain...
The bilateral flank pain is worse than ever! I am no longer comfortable in any position, on any chair, bed, etc. I am now trying to sit with my back not touching anything, which also strains other muscles in my back. It's a no-win situation; but putting any pressure on my kidneys is just killing me!
Last night I had something interesting happen over my R kidney. I was sitting in my office chair when I suddenly felt six or seven sharp stabbing pains that all lingered a few minutes, then were gone. Considering the location and the type and quality of the pains, I think I may have popped some cysts on the R kidney. The overall pain isn't alleviated at all; but at least I probably got rid of a few of the nasty cysts.

The headache goes on...and on...and on...  In about two weeks, it (the headache) will reach the four year mark of its continuous duration! I am still holding out hope that the nephrectomy will result in eliminating this damned headache. It's certainly about time for it to end!

Over the last couple of weeks I've noticed that the hernia under my navel (belly button) has become seemingly firm on a permanent basis. I understand that this is to be expected as the kidney disease progressed, so I'm not worried about it at all. But it is definitely interesting --to me--to see this result finally manifested. This extension above the hernia will disappear during the nephrectomy because the surgeons will repair it once the kidneys are out. It will also be interesting to see how much my belly goes down because of the hernia repair.

I was going to talk about a few other things; but my flanks are hurting so much that I decided to wrap this up so I can go and try to get comfortable.

Again, I'll write about the surgical consult on Wednesday evening, or so. Look to the next entry with news about the nephrectomy!

Until then...

Good Health to All!

ScottW