Mapping My R Fistula

I had my R fistula arm mapped earlier this week. The purpose was to evaluate how well the fistula is developing. The result diagram is below...

 

All in all, the fistula is great. The flows are well above superb. The surgeon likes a flow pressure of 600. My flow pressure is at over 1000!

Vessel development is beyond expectations, and there are numerous branching vessels that are also increasing in both size and flow rates.

The only drawback--and this is directly due to the recent infiltrations--is that I have a pseudo-aneurysm beneath the Lower canulation site. Basically, this is a pocket that has blood coursing through it, going in a continuous circle. It could burst, causing severe vascular issues, but the doc thinks it will be OK so long as I abandon that site for dialysis, thereby reducing pressure on the aneurysm. No big deal. I have already established a new site further up the arm.

To help the pseudo-aneurysm heal, I need to apply gentle direct pressure on the site a few times a day for a couple of minutes each. (Real tough to do, right?) I will be going back on December 1st to have the arm remapped, and the aneurysm evaluated once more.

 

I will certainly update you once I know the results.

 

Good Health to All!

 

ScottW

New UNOS Allocation Policy

New Kidney Allocation Policy Goes into Effect Dec. 4

Richard Formica, M.D.  |  Posted October 14, 2014

 

More than 16,000 men, women and children in the United States get successful kidney transplants each year.
 
United Network for Organ Sharing (UNOS)—a nonprofit that runs the nation’s transplant system under contract with the federal government—is responsible for matching kidneys and other organs from deceased donors with patients on the waiting list. Many factors go into the matching process. They include blood type, body size, tissue typing match, distance from the donor hospital to the transplant candidate’s hospital, and the time a candidate has spent waiting.
Transplant and donation professionals, along with patient and donor family representatives, volunteer on committees and a board of directors to constantly look for ways to improve how we share organs and increase patient safety.
We have been matching kidneys with patients pretty much the same way since 1988. But the current system doesn’t take into account the biologic needs of people with immune system sensitivity very well.  Nor does it maximize the use of kidneys.
An improved kidney matching system that addresses these issues will take effect on Dec. 4. It will help more people have longer function with their transplanted kidneys. It will also shorten the wait for some groups of people who often wait a very long time because they are hard to match with most kidneys.
Transplant candidates already on the waiting list will not lose credit for any time they already spent waiting, which is a major factor in kidney allocation. For those patients who began dialysis before they were listed for a kidney transplant, their waiting time will be backdated to the day they first had dialysis.
Each kidney transplant candidate will receive a score estimating how long he or she will need a kidney transplant relative to the others listed for a kidney transplant. Each kidney will also receive a score.  It predicts how long the kidney is likely to function compared to other kidneys. The 20 percent of kidneys that have the longest expected function will be offered first to the 20 percent of candidates who will need a kidney for the longest time. This will reduce the need for patients to be relisted for a second or third kidney.  The majority of kidneys—the other 80 percent—will be matched much as they are now.

Kidneys that may last a shorter time will be more readily available for people who have a hard time remaining on dialysis. The 15 percent of kidneys expected to function the shortest amount of time will be offered first to a wider area of the country than other kidneys in order to find a suitable patient as quickly as possible.
 
UNOS provides a series of patient brochures called “Talking about Transplantation.” You can find a brochure that explains the new kidney allocation process at http://www.unos.org/docs/Kidney_Brochure.pdf.
If you’ve been diagnosed with kidney disease, you should talk to your physician about your treatment options, including whether or not you should be evaluated for kidney transplantation. It is best if patients are evaluated for transplant before they reach the latest stages of kidney failure. Visit http://optn.transplant.hrsa.gov/members/search.asp for a list of transplant centers by state.
Your transplant team can discuss the best options for you based on your score and the types of kidneys that would best match your need. 
Richard Formica, M.D. is the chair of the OPTN/UNOS Kidney Transplantation Committee. He is director of Transplant Nephrology at Yale-New Haven Hospital and an associate professor of medicine and surgery at Yale School of Medicine.

15 October 2014

As promised, here are this month's labs...

*Albumin (16 Sep): 4.20 g/dL     (+0.40 g/dL from 19 Aug)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (07 Oct): 10.80 G/dL    (-0.70 G/dL from 16 Sep)
  (A Measure of Anemia)

*Ca Corrected (07 Oct): 9.60 mg/dL     (+0.10 mg/dL from 02 Sep)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (07 Oct):  4.30 mg/dL     (-1.00 mg/dL from 02 Sep)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (16 Sep):  229 pg/mL     (-0.25 pg/mL from 26 Aug)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (07 Oct):  5.40 mEq/L    (+0.20 mEq/L from 16 Sep)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (07 Oct):  1.61     (+0.33 from 09 Sep)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher

My numbers are awesome! The PTH and Albumin have not yet been drawn for the month, but all the rest are current. The new fistula is making a big difference!

Speaking of the new fistula, I have had to drop my dry weight by a significant number because the R fistula is working so well.
On the October 7th Tx I had everything at dialysis set for my [then] dry weight of 99.0 Kg. (This was my second or third Tx using the new fistula). When I was done with my Tx, I weighed myself; then re-weighed myself thinking the number wasn't right; but it was! My weight had dropped to 96.6 Kg--an additional fluid loss of 2.40 Kg! That's equivalent of about an entire gallon of water!
The added fluids came from my legs, back and abdomen; as evidenced by smaller ankles and lower legs, less inches around my back, and easier breathing from the diaphragm.
With that much fluid loss you'd expect to hear that I had massive cramping, an out of control headache, etc...but there was NO detrimental effects from the added fluid removal. None!
Hidden fluids that I never knew were there...amazing!

So, my new dry weight is now 96.6 Kg.

My new fistula is going great. The only set back was a triple infiltration last Saturday (we're still using Sharp needles to establish button holes). The hematomas created by the infiltrations weren't bad, but the bruising is!

The bruising only just started coming up yesterday, so it should be looking even better a few days from now.

As long as I'm here, let's get updated on the weights...

07 Oct 14
Starting Weight:   100.7 Kg
Ending Weight:   96.6 Kg
Water Removed:   4.10 Kg

09 Oct 14
Starting Weight:   99.4 Kg
Ending Weight:   96.6 Kg
Water Removed:   2.80 Kg

11 Oct 14
Starting Weight:   98.8 Kg
Ending Weight:   96.3 Kg
Water Removed:   2.50 Kg

14 Oct 14
Starting Weight:   100.0 Kg
Ending Weight:   96.6 Kg
Water Removed:   3.40 Kg The nausea has been better, but not absent. I have days when it doesn't bother me at all, and other days that it just nails me. At least I know that C-Diff is no longer in play. (whew!)Last night I had nausea nit hard at about 0900p, and didn't let up until after 0630a this morning. Nothing helped it, so I just dosed with anti-emetics (Zofran, Tums) at regular intervals all night. Needless to say, but I was up all night.  :o(

That's about all I have for today.

Still waiting on any word from my donor, or the Transplant Committee....

Good Health to All!

ScottW   

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*Update: 17 Oct 2014
 At dialysis yesterday, the tech got the sticks on my R fistula, and they looked good. They even flowed properly. But about two minutes after the Tx began, I suddenly felt my arm get tighter, looked down and saw a hematoma expanding; becoming very painful with every passing second. Luckily the tech was still by me, so I called out, "Jared...Hematoma!" The flow was quickly cut off, but the damage was done.

The infiltration came from the top site...one of the three places infiltrated on Saturday; which is odd because that same site was fine this past Tuesday. Unfortunately, something blew, and now my arm will be even better looking. :o(

Instead of trying to re-canulate, I told the tech just to go for my L arm again. Now, the plan for Saturday's upcoming Tx will be to canulate the L arm, giving the R arm a chance to heal. On Tuesday, we'll try using button hole needles on the R arm. If it blows again, we'll likely need to let the arm rest for even longer.

At least the L fistula is still [somewhat] viable. Otherwise I'd have to get a catheter in my chest, which I do NOT want! Stay tuned...

06 October 2014

Time to get you updated...

Dialysis Weights:

23 Sep 14
Starting Weight:  101.7 Kg 
Ending Weight:   99.1 Kg
Water Removed:   2.60 Kg

25 Sep 14
Starting Weight:   100.2 Kg
Ending Weight:   99.3 Kg
Water Removed:   0.90 Kg

27 Sep 14
Starting Weight:   101.3 Kg
Ending Weight:   98.9 Kg
Water Removed:   2.40 Kg

30 Sep 14
Starting Weight:   101.2 Kg
Ending Weight:   98.7 Kg
Water Removed:   2.50 Kg

02 Oct 14
Starting Weight:   100.7 Kg
Ending Weight:   98.7 Kg
Water Removed:   2.00 Kg

04 Oct 14
Starting Weight:   101.4 Kg
Ending Weight:   96.7 Kg
Water Removed:   4.70 Kg

Notice that my weights have been dropping. I suspect there are two reasons for this...First my recent bout with C-diff, and subsequent poor average food intake.
Second, I began using my new R fistula on Thursday, 02 Oct. The new fistula is incredible strong, and is literally pushing additional fluids through the needles.

Now, as to the recent bout with C-diff, I think I lost a good amount of weight that remained in my body in the form of water. My ankles have been constantly swollen, and I have had that continuing issue with feeling like I am struggling to breathe, while my lungs are clear. The clinic head nurse thinks I've been storing water around my diaghram, which answers the breathing issue. Plus, the ankles being swollen despite dialysis, and you have hidden weight in added water throughout my body.

Saturday's dialysis showed me that these have been going on when I gave back over two additional Kg's of water, yet have had almost no cramping, my dialysis headache was almost non-existent, and I have been more comfortable in my breathing than I have in weeks. I had no idea.
So, when I go in to dialysis this coming Tuesday, I will aim for the same 96.7 Kg I left at on Saturday. If I fail to cramp badly, or have any other severe issues, I'll know for sure that that hidden water weight has come off, and I can take a huge drop in my dry weight(currently at 99.0 Kg).
When I began using the R fistula, I also began using my L arm for BP readings. And, according with using the arm, my BP has dropped significantly to more of a normal range. When I left my last Tx, my final BP was 153/98. While you may think this is high, it actually isn't. By using an abandoned fistula arm, the BP is going to be higher than normal due to the continued high pressure/high flow volume in the arm. Until the fistula dies altogether, the readings will reflect this higher pressure, while the numbers are NOT reflective of the actual BP.

My eating lately has been poor. Foods are just not appealing; and when I do eat, I am only eating about half of what I've [normally] been consuming at this point.  My sense of smell is way off lately as I can hardly smell most foods at all; and when I do smell them, the odor is extremely off-putting. Between the two, it impacts my appetite significantly.

My energy has been slowing improving, and I have been able to drive more and more. However, once my energy is gone, I am pretty much useless the rest of the day. At least I'm seeing improvement in this area!

Overall, the nausea has been way down. I am taking maybe one dose of Zofran per day, on average. Some days I have taken none at all...A definite improvement! 

My sleep has been poor, at best. I haven't had a solid night of sleep in several weeks. Usually, I sleep for four to five hours, then stay awake most of the day, with an occasional nap in the late afternoon/early evening, then stay awake for hours again, being exhausted the whole time. Dialysis days see the greatest volume of sleep over a twenty four hour period of between 12-15 hours. Other than that, there is no pattern to my sleep.

On my labs, the monthly labs won't be drawn until this coming Tuesday. I should have the results by the end of the week. In the meantime, I already know that my Phosphorous and Potassium numbers are outstanding; dropping to 5.3 and 4.9 respectively.

That's all I have for today. Like I said, the latest labs will be available later this week, and I'll post them as soon as I can.

Have a terrific week, folks!

Good Health to All!

ScottW