UNOS News at Transplant Living

Here is the latest newsletter from Transplant Living--a division of UNOS (United Network of Organ Sharing). It has some great info in it, so please take some time to read through.
Thanks!

ScottW

Transplant immunosuppressant drugs to remain a Medicare Part D benefit > CMS announced that it would retain the existing “protected class” status for immunosuppressant medications available as a benefit under Medicare Part D coverage. Average Daily Organ Placement On The Rise > During April, staff of the UNOS Organ Center helped the transplant community place an average of 38.5 organs per day—an all-time monthly record.. OPTN/UNOS leadership briefs Congressional staff members on key policy issues > On May 21, UNOS Chief Executive Officer Brian Shepard and chairs of three OPTN/UNOS committees briefed staff members of the Congress of the United States on policy issues under discussion or implementation. Infections and immunity > There are three general time frames during which infection can occur in the post-transplant period: first month, second through sixth month, and after the sixth month. Urine test improves detection of alcohol use in liver transplant patients > When used together, urinary ethyl glucuronide (uEtG) and the Alcohol Use Disorders Identification Test for alcohol consumption (AUDIT-c) improve the detection of alcohol consumption in liver transplant candidates and recipients, according to a recent study. Transplant immunosuppressant sirolimus may reduce HIV persistence > HIV persistence is reduced in association with immunosuppressants, especially sirolimus, used after kidney transplantation, according to results from the Solid Organ Transplantation in HIV: Multi-Site Study.

Vidant Transplant Support Group Greenville, NC June 23, 2014 6:30 p.m.-7:30 p.m.

28 May 2014

See? What did I tell you?

I said that time is just zooming by; and here it is a full twenty days since my last posting! Even though I didn't sleep last night, I can't let this go one more day...

Dialysis Weights:

10 May 14
Starting Weight:  103.5 Kg
Ending Weight:  99.6 Kg
Water Removed:  3.90 Kg

13 May 14
Starting Weight:  105.4 Kg
Ending Weight:  100.7 Kg
Water Removed:  4.70 Kg

15 May 14
Starting Weight:  103.5 Kg
Ending Weight:  98.8 Kg
Water Removed:  4.70 Kg

17 May 14
Starting Weight:  102.5 Kg
Ending Weight:  99.9 Kg
Water Removed:  2.60 Kg

20 May 14
Starting Weight:  103.0 Kg
Ending Weight:  99.4 Kg
Water Removed:  3.60 Kg

22 May 14
Starting Weight:  101.6 Kg
Ending Weight:  99.1 Kg
Water Removed:  2.50 Kg

24 May 14
Starting Weight:  102.0 Kg
Ending Weight:  98.8 Kg
Water Removed:  3.20 Kg

27 May 14
Starting Weight:  103.2 Kg
Ending Weight:  99.3 Kg
Water Removed:  3.90 Kg

Aside from the one post-weekend day, my entry weights have again remained consistent. At this stage of the game, 'consistency' is a very good thing! It means that I am controlling my fluids, controlling my food intake and getting at least a little exercise.
On the exit weights, I have obviously been giving back too much, at times. There isn't much of anything I can do about this as I have zero conscious control over how my body does during dialysis.  Luckily, the cramping has been minimal. However, I have been dizzy on standing almost always; but this is also due to my low BP that is happening following each treatment (Tx).

And speaking of Blood Pressure...Last week, after meeting with my Nephrologist [during Tx], he took me off one half of my BP med--the Atenolol. So, at this point I am taking just 50 mg/day; even then my BP is still on the low side. It will take about three full weeks before the lower dosage can be properly gauged in its effectiveness as it takes that long for the higher dose to be eliminated from the body. In other words, the 'therapeutic level' must reduce to the current level of meds; and that simply takes time.
Right now, my avg BP entering dialysis is about 130/75. On exit it is 103/64. The top number is good; but the exit number is actually too low. That is why the med reduction happened. I need to have the exit number be a bit higher...somewhere in the 110/70-120/80 range. The dizziness I am having should stop once I achieve that.

Since my last update [on 09 May], I have run the gamut in how I have been feeling. There were a number of days in a row that saw me wake up and immediately go into the bathroom to throw up, then feel really lousy the rest of the day. I was keeping Zofran (anti-emetic) in my regularly for over a full week. Since then things have calmed down. I still get nauseated, but I haven't been vomiting in eight days now. As always, I will certainly take any small victories I can attain.

My sleep has been improving. I seem to be sleeping deeper, and all of my dreams are in my complete control. I'm still getting too much sleep; but I seem to be dragging less than just a couple of weeks ago.

My appetite has been awful. Most days I can barely taste food; and everything is just unappealing. I am often eating only because I need food in my body--which is discouraging because I need to eat lots of protein to remain as healthy as I can.  Hopefully this is just part of the ebb and flow that my appetite has been going through. Time will tell.

That's all I have now. My lack of sleep is catching up to me, so I am going to go sleep in my recliner for a few hours.

Good Health to All!

ScottW






 

09 May 2014

It is amazing how fast time is passing between my posts. I think it's only been four or five days, when in reality, it's over ten. So let's get on with it...

Dialysis Weights:

26 Apr 14
Starting Weight:  103.9 Kg
Ending Weight:  100.0 Kg
Water Removed:  3.90 Kg

29 Apr 14
Starting Weight:  105.3 Kg
Ending Weight:  101.1 Kg
Water Removed:  4.20 Kg

01 May 14
Starting Weight:  105.3 Kg
Ending Weight:  100.5 Kg
Water Removed:  4.80 Kg

03 May 14
Starting Weight:  104.2 Kg
Ending Weight:  99.7 Kg
Water Removed:  4.50 Kg

06 May 14
Starting Weight:  103.6 Kg
Ending Weight:  99.9 Kg
Water Removed:  3.70 Kg

08 May 14
Starting Weight:  104.3 Kg
Ending Weight:  99.5 Kg
Water Removed:  4.80 Kg
As you can see, I began to lower my dry weight below 100 Kg. So far, the cramping has been minimal, but I have had frequent dizziness at home. As you lower your dry weight, your blood pressure naturally lowers, as well. Until your body compensates full-time, you will experience periods of dizziness when standing up. Most frequently these wobble-inducing drops in blood pressure happen upon standing from any sitting or supine position. Gravity, in this case, can be a serious issue; so if you experience dizziness on standing, lean against a wall, a chair or anything else that could help you stop yourself from falling to the ground. For me, the symptoms pass within five seconds, or so. If it goes on for what seems to be too long, tell your physician a/o clinic nurses. Getting your body past any serious drops in BP are vital, so be honest and forthright about anything you experience!

My latest labs are in. Some are good, others, not so much.

*Albumin (22 Apr): 3.80 g/dL     (-0.60 g/dL from 17 Mar)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (06 May):  11.2 g/dL  (+0.40 g/dL from 08 Apr)
  (A Measure of Anemia)

*Ca Corrected (06 May): 9.80 mg/dL (+0.50 mg/dL from 08 Apr)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (06 May):  7.90 mg/dL (+0.50 mg/dL from 08 Apr)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (22 Apr):  151 pg/mL  (-94 pg/mL from 17 Mar)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (06 May):  5.6 mEq/L     (-0.20 mEq/L from 08 Apr)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (06 May): 1.44   (-0.14 from 08 Apr)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher
There isn't much green on these labs! The Albumin drop is particularly concerning. This means that I am not getting sufficient protein in my body; which I need right now. With all the eggs and meats I am consuming, I will have to speak with my DaVita Nutritionist about getting that number up. If the low Albumin number continues, there will be effects in my muscles, heart, blood production, etc. I really don't want to find out what those effects are!

The Potassium (K+) has lowered to just above the top range. This is a definite improvement. I have accomplished this by cutting out the fruit juices, eliminating fresh fruits and tomatoes. (Sad face as more foods have to be left behind...)

However, the further rise in my Phosphorous is very troubling. I don't know how much more I can do to control this. I suppose there are always foods I can eliminate in order to achieve the desired range. I know that the Nutritionist will be speaking with me on Tuesday about this number. The number of Binders (Renvela) that I am taking has already increased; but it can always be upped again. I will keep you updated on this.

This past Sunday was a great day! I felt good when I awoke, and asked my wife if she wanted to go on a drive--which we did. We went to a nice park on the Provo River and enjoyed nature. It was the first time I felt up to a drive since before my Nephrectomy in November; so it had definitely been awhile. I greatly enjoyed the time out of the house, and I loved sitting and listening to the wind, the water and all the sounds of birds, puppies playing nearby, etc. It was extremely rejuvenating to my soul!

Then when Monday rolled around, it was the complete opposite. I awoke extremely nauseated, dry heaved for about twenty minutes, had numerous bouts of diarrhea, and, despite multiple doses of Zofran, was nauseated the entire day. It sucked! At least I had the memory of the previous day to help me through such a terrible day.  Since then, I have been up and down. Mostly feeling lousy.

I saw my Nephrologist yesterday for my latest office visit. He really didn't have much to say because I am doing pretty well, overall. I follow physician orders, follow dialysis clinic guidelines, and actively work at home to ensure I am doing everything I can to be as healthy as I can possibly be. When you do all of that, you will not have too much to discuss with your doctor. And really, doing everything you can to ensure your best possible health--even under these circumstances--really isn't hard at all. You simply have to decide that this is what you'll do, and then you do it. Simple. Easy.  Unfortunately, from what my Nephrologist tells me, my approach is definitely NOT the norm amongst his patients. They generally fight him on most aspects of their care, and their health suffers because of their adamant positions. Too bad; because it really IS easy to do what you have to! Being stubborn just isn't worth the consequences of not following instructions.

I had a friend offer her kidney this last week; but her blood type is incompatible with mine. She felt bad, but I assured her it was no big deal. Nothing has changed because she cannot donate. I really...REALLY appreciate the offer! It was a nice thought to know that someone was willing to do this for me.

And that's it. I am all done with this for today.

I am thinking of maybe doing some posts on video. Any thoughts? (Post them in the comments, if you do!)

Have a great week, everyone!

Good Health to All!

ScottW