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