31 January 2014

The end of January is already here! At least this was a memorable month with my getting placed on the Active List!

Dialysis Weights:

23 Jan 14
Starting Weight:  106.4 Kg
Ending Weight:  102.8 Kg
Water Removed:  3.60 Kg

25 Jan 14
Starting Weight:  107.0 Kg
Ending Weight:  103.0 Kg
Water Removed:  4.00 Kg

28 Jan 14
Starting Weight:  107.5 Kg
Ending Weight:  103.4 Kg
Water Removed:  4.10 Kg
30 Jan 14
Starting Weight:  107.0 Kg
Ending Weight:  103.4 Kg
Water Removed:  3.60 Kg

I am struggling to go progressively lower on my dry weights; but for good reason. I continued to battle ongoing nausea until earlier this week. I saw my doc as he came by the dialysis center, told him about the nausea, and he took me off the Zantac and prescribed Rx Prilosec 40 mg, 1x/day. I decided to start taking it that night (at 11p). Ever since, my nausea is completely gone!
As my daughter pointed out, my battling the nausea added to my water weight because of needing to drink added fluids to accompany meds, try to calm the nausea, etc. Over the next few weeks it will be interesting to see if my control over fluid intake is increased, and I am able to lower my dry weight again. Time will tell.
 As instructed, I have informed my Transplant Coordinator about the Rx change so the Committee is current on all my meds. This is vital for anyone on a Transplant list! If they do not have all of your current meds on file, it could cost you a transplant opportunity, making you wait until later. So, be sure you communicate any changes in your condition, care or meds!

My BP (Blood Pressure) has been high since Christmas. I'm hoping the now ceased nausea will help that to come down. My Nephrologist isn't too concerned, at this point. He stated that it is most likely from my body adjusting to no kidneys. If it continues, we may look at BP meds; but for now, we're concentrating on reducing my water weight.

My sleep continues to be a lot better! My naps are fewer, and the quality of my sleep is vastly improved. My total dialysis day sleep hours are about the same, but the rest of my sleep is better, longer and far more restful.

Along those lines, my dreams are in my complete control. I haven't had a bad dream in weeks. This directly ties in to my successful nephrectomy, the healing [from the surgery] and my getting on the Active List.

My strength still has a long way to go. With all the nausea I've had, I haven't felt up to doing much walking, so I am way behind on where I wanted to be, strength-wise, by this point. However, since there is no average for how long healing and strengthening should take (because ever patient is different), I am concentrating on keeping my mind in a good place, avoiding frustration that can set in because of the delay in my getting better on both the healing and the strengthening. I just have to roll with whatever comes up, and always try to press forward as I can.

That's all for now.

Have a great week!

Good Health to All!

ScottW

22 January 2014

Wow!

I am still smiling over the news that I am on the Active List for transplant!
What a relief!

Here are my latest dialysis weights:

09 Jan 14
Starting Weight:  106.1 Kg
Water Removed:  2.80 Kg
Ending Weight:  103.3 Kg

11 Jan 14
Starting Weight:  107.0 Kg
Water Removed:  3.70 Kg
Ending Weight:  103.3 Kg

14 Jan 14
Starting Weight:  107.2 Kg
Water Removed:  3.10 Kg
Ending Weight:  104.1 Kg

16 Jan 14
Starting Weight:  107.0 Kg
Water Removed:  3.80 Kg
Ending Weight:  103.2 Kg

18 Jan 14
Starting Weight:  107.2 Kg
Water Removed:  4.40 Kg
Ending Weight:  102.8 Kg

21 Jan 14
Starting Weight:  107.3 Kg
Water Removed:  3.90 Kg
Ending Weight:  103.4 Kg

I am still working on reducing my water weight. My new low of 102.8 Kg was great. I had no cramping at all. My thirst was terrible, but as I get used to the lower weight that will slack off. This week I am trying to go low on my daily fluids so that I can go consistently below 103 Kg. Once I can hit that for a week or so, I'll go down to 102.5, and so forth. I know I won't be perfect at hitting that; but I will effort every day to do so.

As promised, I have my latest lab numbers:

*Albumin (30 Dec): 4.20 g/dL (+0.50 g/dL from 21 Nov)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (07 Jan):  10.2 g/dL  (+1.40 g/dL from 03 Dec)
  (A Measure of Anemia)

*Ca Corrected (07 Jan): 9.70 mg/dL (+0.50 mg/dL from 03 Dec)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (11 Jan):  4.10 mg/dL (-4.00 mg/dL from 07 Dec)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (17 Dec):  219 pg/mL  (+62 pg/mL from 21 Nov)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (07 Jan):  5.0 mEq/L (+0.70 mEq/L from 21 Nov)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (14 Jan): 1.50   (+0.11 from 03 Dec)

  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or HigherNotice ALL the Green? Especially the Phosphorous!!! That huge gain has been eliminated! Even the dialysis is more effective. I'm extremely pleased with my numbers!

The entire week past I have been dealing with a lot of nausea. The night of the 15th I was up all night vomiting. I threw up more in that one night than I did in the preceding four years.  :o(  No idea what caused it, either.
In any event, the nausea is going strong day after day. I am keeping up a regimen of Tums and Promethazine every four hours. If I don't do this, I can't eat, can't sleep or be comfortable in the least. My Nephrologist told me that such nausea is common for up to four months post-nephrectomy. Yippee...

Dialysis is going well. We're still using one blunt and one sharps needle for canulation. My arm (and fistula) are healing nicely; but we're still a week or so away from using both button holes again.

Since the surgery I have noticed that my near vision is clearer. This was an anticipated result as the vision had become progressively blurry as the disease worsened. Now that the kidneys are out, I expect that this will continue to clear up.

I am finding that I have to balance out my walking a bit. If I do too much--and it's by no means excessive--then my whole abdomen begins to hurt, as if I was just starting to walk post-surgery once again. When that happens, I take it easy for a couple of days in order to allow things to settle down once more.

That's all I can think of for now.

If you have any questions, please leave them in the comment section and I will get back with you right away.

Good Health to All!

ScottW

Long Awaited News

FINALLY!!

After four plus years I received the following letter last weekend:

 

 

 

 

This was also accompanied by a general information letter from UNOS (the United Network of Organ Sharing):

 



 

 

To answer your first question:  I have been on the Inactive Waiting list for fourteen months. This gives me an automatic bump upwards on the waiting list.  As for the actual length of time I expect to wait from here on out; anywhere from a few months to 1.5 years will pass before I get the call.

I do know that the hospital I will get my transplant at has been doing a significant number of renal transplants the last month. Assuming that pace continues, this will also impact my waiting time.

I could also get one sooner based on my compatibility based on all the blood work.       

In other words, it could be any time, or not for a while. It's really anybody's guess.

 

I am excited that this day has finally arrived! It is so calming to know that there aren't any other hoops to jump through, no more tests, no more waiting for notice that I am Active. What a relief!

 

The end is even closer!  Woo-Hoo!!!  :o)

 

Good Health to All!

 

ScottW

08 January 2014

I know it's been only a relative few days since my last entry, but I have an important update to share with you. So, let's begin with the usual...

Dialysis Weights:

02 Jan 14
Starting Weight:  108.8 Kg
Ending Weight:  104.9 Kg
Water Removed:  3.90 Kg

04 Jan 14
Starting Weight:  108.0 Kg
Ending Weight:  104.0 Kg
Water Removed:  4.00 Kg

07 Jan 14
Starting Weight:  107.5 Kg
Ending Weight:  104.8 Kg
Water Removed:  2.70 Kg

After what happened with my fistula arm last week, I am still playing catch-up on my weight. I would have been closer yesterday--my goal was 104.00 end weight--but with about an hour to go in the Tx, I became extremely nauseated. I'd already had a dose of Zofran when I first got on dialysis, so another dose was not possible. Instead, I was infused with about 200cc's of saline. This Tx often works to minimize cramping and nausea in pts. However, for me, it did little good other than increasing my weight by .80 Kg. That's OK though, because I am getting even better at controlling my fluids; so going into tomorrow, I am hoping for a two kilogram increase. By Saturdays conclusion of Tx, I want to be at 103.5 or lower.

In dialysis we are still going with the one button hole needle, and one sharps needle. Canulation is still painful, but at least we're getting it on the first try every Tx (treatment).
On the subject of my fistula arm...The bruising is showing up now and, thought not significant to the eye, the pain I have in my entire lower arm is still quite bad. It will just take time for the arm to heal. In a few weeks I shouldn't need the lidocane injections [prior to canulation] anymore.

Overall, the nausea I've been experiencing (post-surgery) has reduced. I am still getting nauseated more than I'd like; but at least it is less often than it has been lately.

I can tell my brain is clearing a bit since the nephrectomy. My ability to hold intelligent, thoughtful conversations is better, and my sense of humor is re-emerging once again. I am laughing more, joking more and have zinged my wife with some digs a few times--something I haven't done in a few years. So I'm enjoying my brain improving, for sure!

The last two weeks I have noticed that my sleep is getting better and better. The quality is definitely vastly improved, and the total hours I get at a time are up. I am taking fewer naps, and feel relatively rested; more so than in the last two or three years.
And, my dreams are in total control. I haven't had a bad dream since mid-October, or so. I'll definitely take that one, too!

Alright, on to my news...

I contacted my Transplant Coordinator yesterday about getting on the Active Recipient List, seeing that I am now seven weeks post-surgery. I heard back from her within a couple of hours. She stated that I need to update two tests--The Cardiac Stress Test and the PRA blood work.
She will be sending the PRA kit to my dialysis center, and they will draw the labs.
On Friday, 17 January, I will be doing the Cardiac Stress test. Seeing that my last test showed a 100% health rate, I am not the least bit worried about getting a bad result. Ain't gonna happen.
Anyhow, once the labs are evaluated and the Cardiac Test completed, I will be evaluated for the Active List. Woo-Hoo! Four years plus, and I will finally be on the fast track for a transplant!
Once I'm on the active list, it will be anywhere between a few months to two years before I get the transplant.

So, that's the latest.

Things are getting much, much closer to the end of all of this. At least, of this phase. Once I do have the transplant, it's a whole new life to adjust to. I'll have LOTS of blood draws, LOTS of follow-up by the Transplant Team, my body has to adjust to the meds, I have to regain strength and stamina, and I have to get back to life in general.

There's still a long road to travel...so keep on stopping by, even after I have the long-awaited kidney transplant.

Thanks for continuing to walk with me on this journey!

Good Health to All!

ScottW
 

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!