I met with the Transplant Committee this past Wednesday for my yearly review. In short, they are extremely pleased with my progress on all fronts--dialysis, diet, labs, etc.
However, due to the new UNOS rules, the U of U has added patients to their list from the State of Nevada, which has knocked my standing down significantly. Instead of being in the high single digits, I am now at #30. This is unwelcome news, to be sure. However, my name can still come up if a perfect match is found. So, the latest estimate is now another 4-6 months...at least.
Also, two new requirements have been added to the pre-transplant workup for the Shingles vaccination, and an updated MMR (Measles, Mumps, Rubella), if needed. I don't know if this is for all patients, or only those over a certain age--I didn't ask that.
Seeing that I had Chicken Pox three times when I was young, I am at a very high risk for shingles; a disease which can destroy a transplant. So doing this is a VERY good thing for me. Also, after the shingles inoculation, there is a one month soft hold on my List status due to the possible side effects of the vaccination.The MMR has the same soft hold period, so I will be getting both done at the same time--assuming both are needed--just so I don't double up the soft hold period.
During my appointment with the Committee, I also had a load of blood work done. Part of those results will tell me if I need the MMR. After I get those results I will be getting one or both shots.
I also have to have a new Cardiac Stress test. This is done every eighteen months while on the transplant list to assure your heart is strong enough for the surgery and recovery. I will let you know how that goes.
So that's my Transplant Committee review news. Some good, some bad. All in all, I am in terrific shape heading into my transplant!
Dialysis Weights:
25 Aug 15
Starting Weight: 97.6 Kg
Ending Weight: 93.4 Kg
Water Removed: 3.20 Kg
Start BP: 194/118 End BP: 134/85
27 Aug 15
Starting Weight: 95.9 Kg
Ending Weight: 93.2 Kg
Water Removed: 2.70 Kg
Start BP: 170/115 End BP: 126/79
29 Aug 15
Starting Weight: 95.9 Kg
Ending Weight: 93.4 Kg
Water Removed: 2.50 Kg
Start BP: 175/113 End BP: 142/87
01 Sep 15
Starting Weight: 97.2 Kg
Ending Weight: 93.3 Kg
Water Removed: 3.90 Kg
Start BP: 189/104 End BP: 103/77
03 Sep 15
Starting Weight: 96.1 Kg
Ending Weight: 93.6 Kg
Water Removed: 2.50 Kg
Start BP: 185/113 End BP: 130/75
05 Sep 15
Starting Weight: 96.4 Kg
Ending Weight: 93.1 Kg
Water Removed: 3.30 Kg
Start BP: 172/106 End BP: 111/71
08 Sep 15
Starting Weight: 97.8 Kg
Ending Weight: 93.9 Kg
Water Removed: 3.90 Kg
Start BP: 184/106 End BP: 120/85
10 Sep 15
Starting Weight: 96.0 Kg
Ending Weight: 93.5 Kg
Water Removed: 2.50 Kg
Start BP: 185/112 End BP: 128/73
Pretty consistent weigh-ins, and I am hitting my dry weight most of the time. There's also a nice drop in my post-D BP readings. So on this front, my dialysis numbers are looking really good.
September 8, 2015 Lab Work:
*Albumin (18 Aug): 4.20 g/dL (-0.20 g/dL from 21 Jul)
(A measure of Protein in the blood) NR (Normal Range) 4.0 g/dL or Higher
*Hemoglobin (08 Sep): 10.00 G/dL (No Change from 18 Aug)
(A Measure of Anemia)
*Ca Corrected (08 Sep): 10.2 mg/dL (+0.10mg/dL from 04 Aug)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL
*Phosphorous (08 Sep): 4.00 mg/dL (-0.20 mg/dL from 04 Aug)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL
*PTH Intact (18 Aug): 219 pg/mL (+28.5 pg/mL from 21 Jul)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL
*K+ (08 Sep): 5.7 mEq/L (+0.20 mEq/L from 18 Aug)
(Proper potassium levels keep your nerves and muscles working well) NR 3.5 to 5.5 mEq/L
*spKdt/V Dialysis (08 Sept): 1.80 (+0.01 from 04 Aug)
(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 (08 Sep): 10.00 G/dL (No Change from 18 Aug)
(A Measure of Anemia)
*Ca Corrected (08 Sep): 10.2 mg/dL (+0.10mg/dL from 04 Aug)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL
*Phosphorous (08 Sep): 4.00 mg/dL (-0.20 mg/dL from 04 Aug)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL
*PTH Intact (18 Aug): 219 pg/mL (+28.5 pg/mL from 21 Jul)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL
*K+ (08 Sep): 5.7 mEq/L (+0.20 mEq/L from 18 Aug)
(Proper potassium levels keep your nerves and muscles working well) NR 3.5 to 5.5 mEq/L
*spKdt/V Dialysis (08 Sept): 1.80 (+0.01 from 04 Aug)
(A measure of the effectiveness of dialysis and blood filtering.) NR 1.20 or Higher
Well, the Potassium is doing its usual jumping around. A couple weeks ago it was at 5.4 mEq/L, and now it's in the high range. There isn't too much more I can be doing to stabilize this result. As I've stated before, the K+ will jump around no matter what I do.
All my other numbers are looking great. Even the Albumin, though at the low end of the range, is still in the green.
My headaches have taken a turn for the worse. Lately they have been a combined mixture of TMD related and dialysis headaches. The two factors make for some rather unpleasant days. Thank goodness I have the right meds to knock them down to manageable size!
Food-wise, I am doing about as well as I can. At least I've honed into the fact that only freshly prepared food is appetizing. This helps eliminate a lot of frustration when it comes to finding something to eat. Everything still has to be light--as in, not overly heavy in regards to fat/greasiness--but at least I finally know what to eat without off-putting my appetite.
My dreams remain completely in my control. Just last night I had another dream that I consciously altered so as to avoid anything frightening. Even though I have been doing this for over four decades, it never fails to amaze me that I can do this.
On that note, my sleep is still all over the place. Last week I had a day in which I slept for twelve hours, but then couldn't sleep for over a full day. This was followed by on and off sleep for the next two days. I still haven't had a full sleep (8-9 hours) on any given day (or night) in weeks. Even my post-D naps will range anywhere from four to seven hours of fitful sleep. All in all, I seem to be getting enough sleep to keep me functioning.
On the mental front, I am in a good place. Looking forward to everything upcoming is a challenge--especially after the latest transplant news--but the effort is well worth it. My day to day routine gets to be extremely boring; but I am keeping myself busy with a variety of activities that challenge my brain, or just keep it occupied.
I believe that is all I have for today. So, enjoy your week ahead, and keep smiling, despite your trials!
Good Health to All!
ScottW
