As I mentioned earlier, the dialysis clinic in Phoenix destroyed my great fistula. They were extremely rough inserting the needle, not assuring they were even in the proper tract. When I went in again the following Saturday they had no pulse in the fistula, and could not dialyze anything on either site.
As I alluded to before, the clinic offered no assistance to me in knowing what to do or where to go. They literally told me that they couldn't dialyze me and that I had to "find someplace to get my dialysis." No calls to a nephrologist, no advice about which hospitals to go to; nothing.
Luckily, my brother-in-law in a neurologist and he suggested Good Samaritan Hospital in Phoenix. It was an excellent recommendation. Also fortunate was that I had my KARDEX sheet that I got from my home clinic prior to my trip. It had all my meds listed, treatments, hospitalizations, etc. This saved me so much hassle and redundant explanation. The doctors who saw me looked at that sheet, asked a few questions, and zipped me on my way through the system. It was quite literally a life saver. Within a few hours I had a temporary Central line in my neck, and I did two consecutive rounds of dialysis in the hospital. In all, I was there for about twenty seven hours before being released.
I STRONGLY RECOMMEND ANY DIALYSIS PATIENT WHO IS TRAVELING TO GET A COPY OF THEIR KARDEX PRIOR TO DEPARTURE, AND CARRY IT WITH YOU AT ALL TIMES. IT COULD LITERALLY SAVE YOUR LIFE!
I flew home the next day, then was at my vascular surgeon's office the day after that. He immediately sent me to day surgery to place another central line, this time in my R upper chest, just below the clavicle and subclavian artery.
A week later I was back to get that graft surgery, which, as I stated in a previous post, failed within a week. It is because that failed that I must now have another surgery. Yes, I could just go with the central line until I get my transplant. That is a perfectly viable option for me. However, looking at this long-term, and assuming the transplant will fail down the road, I will need an access for dialysis that does not involve another central line. Because of this, I have opted to go ahead with the graft surgery. It will potentially be extremely painful, and I will have a nasty, long scar on my arm. I am willing to do this in preparation for a future free from another dangerous lumen in my chest, should the need arise.
Dialysis Weights
(I am only including the current month and nothing previous)
02 Jan 16
Starting Weight: 96.2 Kg
Ending Weight: 94.7 Kg
Water Removed: 2.50 Kg
Start BP: 131/92 End BP: 116/70
05 Jan 16
Starting Weight: 97.6 Kg
Ending Weight: 94.7 Kg
Water Removed: 1.90 Kg
Start BP: 164/109 End BP: 109/61
07 Jan 16
Starting Weight: 97.6 Kg
Ending Weight: 93.9 Kg
Water Removed: 3.70 Kg
Start BP: 162/98 End BP: 109/93
09 Jan 16
Starting Weight: 96.3 Kg
Ending Weight: 94.0 kg
Water Removed: 2.30 Kg
Start BP: 148/97 End BP: 107/93
12 Jan 16
Starting Weight: 98.0 Kg
Ending Weight: 94.0 Kg
Water Removed: 4.00 Kg
Start BP: 162/102 End BP: 148/93
14 Jan 16
Starting Weight: 95.9 Kg
Ending Weight: 94.2 Kg
Water Removed: 1.70 Kg
Start BP: 129/89 End BP: 96/68
16 Jan 16
Starting Weight: 97.0 Kg
Ending Weight: 94.1 Kg
Water Removed: 2.90 Kg
Start BP: 137/85 End BP: 119/63
My weights are finally evening out again. After my Thanksgiving trip, it took my weeks to get my weight under control again. I had numerous 4+ Kg removals throughout the Christmas season. I don't know what it is about traveling; but when you go, fully expect a massive weight gain, then weeks of getting it back on target once you get home.
January Labs Results
(Again, because of Phoenix, I am not listing the December labs, and am also comparing the current numbers to my November 2015 labs)
*Albumin (22 Dec): 4.00 g/dL (No Change from 20 Oct)
(A measure of Protein in the blood) NR (Normal Range) 4.0 g/dL or Higher
*Hemoglobin (05 Jan): 10.1 G/dL (+0.20 from 20 Oct)
(A Measure of Anemia)
*Ca Corrected (05 Jan): 9.50 mg/dL (-0.30mg/dL from 06 Oct)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL
*Phosphorous (05 Jan): 4.10 mg/dL (-0.60 mg/dL from 06 Oct)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL
*PTH Intact (22 Dec): 385 pg/mL (+118.0 pg/mL 20 Oct)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL
*K+ (12 Jan): 5.7 mEq/L (+0.30 mEq/L from 20 Oct)
(Proper potassium levels keep your nerves and muscles working well) NR 3.5 to 5.5 mEq/L
*spKdt/V Dialysis (05 Jan): 1.71 (-0.17 from 06 Oct)
(A measure of the effectiveness of dialysis and blood filtering.) NR 1.20 or Higher
(A measure of Protein in the blood) NR (Normal Range) 4.0 g/dL or Higher
*Hemoglobin (05 Jan): 10.1 G/dL (+0.20 from 20 Oct)
(A Measure of Anemia)
*Ca Corrected (05 Jan): 9.50 mg/dL (-0.30mg/dL from 06 Oct)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL
*Phosphorous (05 Jan): 4.10 mg/dL (-0.60 mg/dL from 06 Oct)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL
*PTH Intact (22 Dec): 385 pg/mL (+118.0 pg/mL 20 Oct)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL
*K+ (12 Jan): 5.7 mEq/L (+0.30 mEq/L from 20 Oct)
(Proper potassium levels keep your nerves and muscles working well) NR 3.5 to 5.5 mEq/L
*spKdt/V Dialysis (05 Jan): 1.71 (-0.17 from 06 Oct)
(A measure of the effectiveness of dialysis and blood filtering.) NR 1.20 or Higher
I really can't complain about my labs whatsoever. They were a bit wild once I returned from Phoenix, but I have gotten them under control as well, just as I have gotten my wild weight swings back in check. There is likely a direct correlation there, but I am not going to explore it right now.
As I use the lumen (the central line) in my chest, I have had to learn a whole new set of rules to go along with it. If you don't know what a central line is, just look it up on the internet. The biggest rule to follow is to keep it clean and free of contaminants. Why? Because the lumen is a direct line of infection to the heart. THAT is why a central line is so dangerous. As a Kidney patient, with a compromised immune system--and soon to be with no immune system whatsoever due to an impending transplant--any serious infection acquired via the lumen (the actual device placed into your descending aorta) could actually kill you! So KEEP IT CLEAN!
Next, your dialysis tech should always use a mask (you, too!) when they are hooking up the lumen and taking you off of dialysis. This is also to help prevent infectious transfer. Along with this, they should always wear gloves, use alcohol swabs when contacting any part of your central line.
Your lumen is "packed" post-dialysis with either Saline or Heparin. This prevents back-flow into the lumen, and helps keep the ports on the lumen clear of clots or other blockages. This past Thursday I had to have a nurse [pack my lumen with Activase, a Thrombolitic, because my flow was decreasing from 400 to 200, and my dialysis was far less effective as a result. So, the Activase was put into my lumen. When I went back yesterday, my flow was much better at 350. *In my clinic, only a nurse can pack the lumen with Activase; whereas a tech can pack it with Heparin or Saline.
Next, if your lumen flows properly, you should have Yellow Caps on your access sites. These should be changed once per week--Thursdays for me--to prevent infectious buildup on the access sites.
However, since I am having flow issues, I now receive Blue Caps that are changed out every single Tx. This reminds the techs to my lumen must be packed with Heparin after my dialysis session, which helps the flow the following session. It is also to prevent infectious transmission.
When you bath, You MUST keep your central line dry and free of soap or other contaminants! This is ABSOLUTELY VITAL to your well being!! To get around this so I can bathe, my wife washes my hair in the kitchen sink, then we cover the lumen and access sites (and bandage) with a thick plastic sheet, and then tape all around it against my chest. Then, I wash the lower part of my body in the shower, and my wife helps clean my arms and back, being sure to keep the water away as much as possible. I've done this now ten plus times and my lumen and bandaging has so far remained dry.
The only really good part about using a Central Line is that once I'm off the dialysis lines, I am done and can pack up and go home. No waiting around to hold my access sites so I clot properly; I just get to go...which is really nice!
Anyhow, I'm done for now. With my surgery fast approaching, this is likely my last entry for at least three weeks. Please check back occasionally as you never know when I could type up even a brief entry. Wish me luck, send a few good thoughts my way, and please, keep me in your prayers.
Good Health to All!
ScottW
**The upcoming surgery will be either an Artificial Loop Graft, or a Basilic Vein Transposition. Which one is done will depend entirely on my vasculature; which, the surgeon will know once he is in my arm.
Look them up so you can understand what I am about to go through. Both are on WebMD and other sites, as well.
Your lab results look good! I am struggling with my phosphate now. Still high even when I am on 3000 mg Fosrenol (damn expensive) now. Probably because of my thyroid problem.
ReplyDelete4kg in one session! That's a lot! I get giddiness and cramps if I go beyond 3 kg. But it may be because I am "smaller" (my dry weight is 58 kg).
Good luck with the upcoming surgery. All will go well. Stay positive!
By the way, I have PCKD too. My main thing is SLE. I thought my PCKD was caused by Lupus, but a doctor told me I won the lottery twice by having PCKD **AND** Lupus. He said PCKD is not caused by Lupus. I can feel my kidneys growing bigger in size. Will have a CT scan this July to see how much they have grown. No transplant in the pipeline for me. When they took out my uterus two years ago, they found Stage 1 cancer cells in there. In Singapore, the law has it that transplant is only for patients with "pristine" health. I would have to appeal to get back on the list. Was very devastated when I first heard that I had been kicked out of the list... but I got over it. Transplant sounds good, but it has its cons too. I am content if my dialysis continues like this without hiccups. I can still lead a fairly normal life.
ReplyDeleteI'm sorry about the awful nurses you had. It is so important to get good nurses. Our "lifeline" depends a lot on how they handle it. Hopefully you'll get some good nurses soon.