Post-Transplant Update: 10 October 2017

Since I began working from home, I have neglected my blog, so it is time to do at least a little catch-up. 

To start...Lab numbers.

(My latest...)

09 Oct 17

Tacrolimus: 8.5

Creatinine: 1.71

Hematocrit: 35.2

Lymphocytes: 15

Lymphocytes ABS: 1

Neutrophils: 61

Neutrophils ABS: 4.1

Red Blood Cells: 3.88

White Blood Cells: 6.5

Glomerular Filtration Rate: 44

All the labs are looking great!

My lymphocytes are bouncing around, but are not in danger of crashing to dangerous lows. With the Thymoglobulin completely out of my body, things should settle down. With everything that has happened to my body recently, I am not the least bit surprised that numbers are somewhat unstable. Plus, with my upcoming surgery, normality won't happen anytime soon.

The Tac is terrific! I am at 1.5 mg twice a day and for our current target, this is the right dosage.

The creatinine is a bit high, but considering I am fighting a cold, I'll take the 1.71!

Speaking of my cold, as per instructions, I contacted the Transplant Committee to see what meds I could take, and they responded with Benadryl, Delsym Cough Syrup (if needed) and Tylenol (2,000 mg max/day). That's it. So, THAT has been my dosing routine for fighting my first cold with a transplant. It hasn't been fun considering the awful headache that Benadryl gives me, but after five days, it is finally getting better. Another few days should do it.

I'm just glad that this cold did not do what other colds almost always do...create an upper respiratory infection that takes weeks to get over. Plus, with my transplant, I would probably end up in the hospital...again. So, I'm especially glad that that didn't happen!

My weight is constantly yo-yoing up and down. I've gotten as low as 108 Kg, and as high as 114 Kg. With all the recent high doses of prednisone, it will take time to get my weight stable. Again, with my upcoming surgery, it will just take longer than usual.

My appetite remains good, and any nausea remains minimal...a welcome change from recent years!

My energy is still quite low. I have spurts of doing a lot of things, then crash and get little else done. This will definitely not improve until I am healed up from the hernia surgery.

Other than that, the only thing to report that comes to mind is that my BP is coming down nicely. My average systolic is around 135, and the diastolic around 70.

My temp remains low at 97.7 degrees f. Pulse ranges anywhere from 58-82.

So, I have to get back to work...I will try to get another update done sooner, rather thgan later...but no guarantees on that!  :o)

Until then...

Good Health to All!

ScottW

Post-Transplant Update: Oncology Doc and Transplant Team Surgeon Visit

Yesterday I met with two separate doctors, as advised by the Transplant Committee. The first was with an Oncologist to follow-up with the results of the bone biopsy I had while I was in hospital for the rejection episode. His news was basically exactly what I was expecting...take no action and just keep an eye on my WBC, and Neutrophils. He stated that more than likely, I'll need an occasional Neupogen shot, but at a lower dose (300 Mcg) than the original shot I had in late August (460 Mcg). *Mcg=Micrograms.
So, great news there.

The second doctor I had to see was one of the Transplant Team Surgeons to discuss the hernias I have in my abdominal wall. The bad news here is that I don't have two hernias... I have three. Hmm...

The top one apparently developed after my double nephrectomy back in 2013, and is located just R of the surgery scar, near the navel. This has grown large enough that it has encapsulated about 30cm of small bowel, putting me in danger of bowel strangulation. (NOT good, at all!)

The second is located near and just above the scars I have at the bottom of my main abdomen that resulted from surgeries way back in the early 80's. One was for bleeding polyps in which about 18 inches of small intestine was resected due to three bleeding polyps dragging that much intestine into the large bowel. The other was due to an exploratory abdominal surgery about two years later. It is suspected that the hernia was slow in its development.

The third was one that I knew about, and is located in the lower abdomen just to the R of the bladder. A portion of the bladder is already sitting in this hernia, and strangulation of the bladder is a very present danger.

The surgeon agreed with me that I need to give my body more time to heal, so my heart can grow stronger, and my body can adequately recover from the transplant and near rejection. As a result, and based on work things that are coming up, November 14th will be the surgery date. All three hernias will be repaired at once during a 4-6 hour surgery. I will spend between 3-5 days in hospital before coming home. Expected recovery time will be 4-6 weeks in total. 

Between now and then, I am starting a new job...It's been eight years since my kidney diagnosis, so working will be VERY different from my familiar routine! This job quite literally fell in my lap when a long-time friend decided to start a business and she wants me on board with her new company. Because of everything that has happened lately, I get to work from home as much as I need, for as long as I want. That way I can recover properly, get exercising (when I'm allowed, that is!) and fully regain my strength and stamina WITHOUT the added pressure of going to work at an office all day. What a huge blessing this is! Plus, I get to travel around the country, too. Not a bad gig!

So, that is the latest on that front. More surgery ahead, but that should be the last major hurdle before my complete healing really takes off.

Since I haven't given my numbers lately, here are the very latest...

Tac: 9.3

Creat: 1.59

WBC's: 5.0

RBC's: 3.91

HCT: 36.7

Lymph: 16.5

Lymph ABS: 0.8

GFR: 48

BUN: 35

Glucose: 105

Phos: 3.3

Neutrophil Auto: 62.9

Neutrophil ABS: 3.2

The Tac is a little higher than what is wanted, but my daily dosage was increased by 0.50 mg last week at Kidney Clinic. I expect that dosage to drop again on Thursday. Most of the other numbers are good, but not great. As the kidney continues to heal, these should normalize and stay consistent.

That is all I have for now. A mixed bag of news, to be sure. So...on we go, moving ever forward and keeping my head up, my mind in a great place and my spirits high.

Until next time...

Good Health to All!

ScottW

Post Transplant Update: Cardiac Angiogram Results

This past Monday I had the cardiac angiogram to examine the 24% of my heart that doesn't receive adequate blood flow when under stress. I was not the least surprised with the result...

I arrived at 0700a, and was immediately taken to the prep room to change to a hospital gown, have the usual blood draws, glucose test, urinalysis, etc. The cardiologist performing the test came in to introduce himself and discuss the procedure, possible outcomes, etc, and to ask for any questions, which we had a few. Among the three outcomes are: Balloon expansion of the coronary artery, Placement of a coronary stent, or do nothing at all.

The test was expected to take anywhere from 45 minutes to 1.5 hours, depending on any medical adjuncts needed.

After being taken to the exam room I was placed on the table , hooked up to various monitors, had my heart scanned via CT, and the test proceeded. The probe was placed in my groin area of the R descending aortic branch. It was then guided to the coronary artery through the descending aorta, which I watched on a monitor. (It was really, cool, actually!)

Once the proper artery was reached, the internal contrast dye was injected. Seeing the coronary arteries and their various branches was fascinating to me. Once visualized, the doctor announced that the test was done, and I would be returned to the prep room shortly.

Once back in the prep room, he came in to say that we should just "ignore the PET test because your heart, aside from the myopathy, is just fine. There is zero coronary occlusion, so no intervention was needed."

AWESOME NEWS!!!

So, I then had to lay still for four total hours to allow the access point of the descending aorta to close properly so that no exsanguination would happen. The nurse brought me some food, as well as two cans of coke, which help the heart recover from the test--it's the  low dose of caffeine that does it.

So, no stent, no balloon. To put it simply, now that my renal artery is open, my heart can now heal and strengthen properly. I will be taking a few cardiac meds for a month or so to help it along, but there is absolutely NO danger of any possible cardiac event in the future.

The meds include Hydralazine, Lasix, Isosorbide and continued use of Cardivedolol.

Next up, a visit with Oncology to discuss the bone marrow findings from that bone biopsy, followed that same day with a surgical consult to plan for the soon-to-happen double hernia surgery. Both happen this coming Monday (25 Sept.). I will, of course, let you know how both visits go.

Until then...

Good Health to All!

ScottW

Post-Transplant Update: A Rejection Episode and So Much More

*Reminder Note--This blog reflects my own experience with Polycystic Kidney Disease (PCKD or PKD), and Renal Transplant. All of the treatments, procedures and meds have been determined by my doctors and local protocols. How any patient does under physician care is a solely individual result, and no one should infer that how I do will be (or is) indicative of their own experience. Please, always consult a physician for any and all health concerns, and always follow their guidance, recommendations are healthcare advice.* 


So much has happened since my last full blog that I have decided to just give you the highlights. This way, I don't spend days trying to get everything typed up while more and more time passes and more and more information must be shared. So, let's plunge into things...

Earlier this month I had a slight rejection episode when my renal artery decided to occlude proper blood flow to the kidney, allowing just 10% of flow to the organ. I was put in the hospital for a week as various tests, labs, and procedures were conducted to determine any and all issues that may have been going on. These were:

-Renal Ultrasound

-Renal Biopsy (twice!)

-Renal Angiogram

-Renal Angioplasty

-Bone Marrow Biopsy

-CT Scans (3)

-PET Test (Cardiac Stress Test)

and coming this Monday (18 Sept)

-Cardiac Angiogram and [possible] Angioplasty.

Plus, before the end of the year I should be having another surgery to fix two inguinal hernias that developed in my abdominal wall since the start of this whole kidney thing. Sounds fun!

Once the renal artery was opened [via the renal angioplasty] I have lost a total of five Kg's of water weight as my kidney may now freely filter all the blood. I fully expect this trend to continue for another week as the kidney keeps healing and filtering properly.

The whole cardiac involvement likely stems from eight years of fluid load and fluid shifts caused by renal failure, dialysis and fourteen months of a central line in my heart. The PET test showed that under stress, my heart has a full 24% of its muscle that is NOT receiving adequate blood flow. This  is a condition that many people develop as they age--usually in their 70's+; mine was just accelerated by everything going on with my health since my first diagnosis.

So, on we go. The Transplant Team has emplaced a fantastic team of doctors around me, so everything should turn out fine. I am not worried one iota that things will be otherwise.

Since the hospitalization the effects from the Neupogen shot have completely worn off (Thank goodness! That was painful!). I am temporarily on Insulin while I go through a drawdown of high doses of Prednisone--so my pancreas is not damaged by the steroid. This will end in just a few days from now.

My labs have returned to near normal levels. The latest numbers (from yesterday) are:

Tacrolimus: 7.2

Lymphocytes: 12.3 (They had been as low as 1.0 in the hospital)

WBC's: 8 (Normal Range)

GFR: 46

K+: 5.0 (NR)

HCT: 35.0

Creatinine: 1.67 (Great!)

Neutrophils ABS: 5.60 (NR)

and Neut Auto: 69.6 (Just over NR)

And that is where I am going to end this blog entry.

As things progress, I will update you as I am able. If a lot of time passes between entries, you can safely assume that something has happened to cause the delay, and that I will get the blog caught up as soon as possible.

Good Health to All!

ScottW

Post-Transplant Update: 31 August 2017

I have a LOT of info--some, highly unexpected--to give you on this update. So, let's just plunge right into things...

First, I am now off two more meds, and have one that is new. Gone are the Lasix (Furosemide) and the daily dose of Zantac.
I am adding a Clonidine patch to help regulate my blood pressure until the Transplant Team can figure out why it continues to be elevated. The patch is a once per week application. As I still have to pick up the prescription, I do not yet have to paperwork stating side effects.  How long I will be using this is still a large unknown.

Next, my White Blood Count continues to be lower than what is wanted. So, there are two things I will be doing in the coming weeks. One, I will be receiving an injection of Neupogen, and WBC growth-stimulating medication to increase my body's ability to produce those necessary White Blood Cells.

Now, I can hear some of you clamoring with the fact that, as a transplant patient, I cannot have strong, active WBC's that might overwhelm the kidney. Well, that much is true...to a point. While too many WBC's can attack the transplanted organ, too few will potentially lead to the collapse of what little of my immune system remains leaving me vulnerable to cancers of various types--the main concern--and illnesses that would otherwise be considered minor (colds, infections, etc) attacking my body and causing all sorts of potentially serious life-endangering issues, and possible destroying the kidney.

For now, this is all precautionary! If anything changes that is otherwise, I will certainly pass that info on.

Two, I am scheduled to see a Cancer Specialist on 19 Sept to again, eliminate anything untoward happening in my body. By its very nature, organs that are transplanted run the inherent risk of developing various types of cancer, diabetes and other ailments. Much of what happens to develop these conditions depends of the individual patient life choices. As I have stated before, aside from the whole kidney thing, I am generally very healthy, have exercised my entire life and adjust my diet properly as I have aged. There ARE a few of incidences of cancer in my family history, but two were related to smoking, and the other was related to extremely poor efforts to assure proper doctor care oversight, leading to an unnecessary (and completely avoidable) outbreak of prostate cancer that led directly to a death. That's it, so far as I am aware.

***That is all I am going to write on this entry as the bigger news is on the next entry, and completely took over everything before I could finish typing this up.***

Post-Transplant Update: 29 August 2017

I know this is late, but I had a busy weekend with family coming to visit, so I was either unable to do my Friday entry, or simply too tired from playing/running around and visiting. So, let's get right into last Thursday's numbers...

24 Aug 17 Labs

Tac: 7.6 (+0.8 from 21 Aug)

Creatinine: 1.94 (No Change)

WBC's:  2.50 (-0.5)

RBC's:  3.54 (-0.22)

HCT: 31.8 (-3.20)

Lymph: 14.0 (+0.4)

Lymph ABS: 0.4 (NC)

GFR: 38 (NC)

BUN: 46 (+0.6)

Glucose: 101 (+2)

Phos: 3.4 (+0.4)

*NC = No Change

*NR = Normal Range

      = Good, or Positive change

      = Bad, or Negative change

      = Within NR

So, a mixed bag of test results; mostly red numbers, though. Remember, these lab results will be up and down while we go through the process of stabilizing kidney function, in conjunction with normalizing my body chemistry as much as we can.

Also on Thursday I had a Cholesterol test done, and those results are exceptional!

Cholesterol: 136 (or, 22 below the Normal target Range.) This result is really no surprise whatsoever. I have had great cholesterol my entire life!

Triglycerides: 141 (In NR)

HDL Cholesterol: 32 (or, 8 below the Normal Target Range.)

Non-HDL Cholesterol: 104 (In NR--Less than 130)

So, even with the cardiomyopathy and nearly eight years of inactivity, my Cholesterol is in terrific shape. As soon as I can begin core exercises, and get my walking up to a decent pace, these lab values should only improve.

Now, as far as Monday's labs, I do not yet have all the results; which will sometimes happen. As soon as I have them all I will update this entry; so if the progression of these labs interest you, please check back.

28 Aug 17 Labs:

**(0422p) I just received a call from the lab stating that a [new] tech had begun my blood work in the wrong order and ruined the draw. So, no labs for Monday.  I contacted my Transplant Coordinator and she just told me to get them done on Thursday, as scheduled.**

I started taking Lasix last Friday morning to relieve Sodium content and extra water in my body. The Cardiologist explained that Sodium can unknowingly collect in the tissues of the body despite urinary efforts that would normally excrete the excess mineral. Lasix (specifically) will draw that extra salt out of the body via increased urinary excretion because, as a strong diuretic, Lasix increases urinary output dramatically.

Since first taking the Lasix I have lost three kilo's of water weight. My average daily output has increased by about a Liter per day.

To avoid my becoming dehydrated, I had to increase my fluid intake. Whereas before I was averaging about 3.25L per day of fluids, I am now targeting a full four liters of fluid intake. That number is actually low. I was instructed to drink closer to five liters each day.  As this is still a stretch for me--due to the mental hesitation that results from 3.5 years of severe fluid restriction--I am only concentrating on four liters+ from day to day. As I am able to do this consistently, it will be natural for me to hit that five liter mark.

Remember, before I was afflicted with the kidney disease, I was downing anywhere from 2 to 2.5 gallons of fluids every day; or, between 8-10 liters. So, I will be able to reach that level once again.

I have an upcoming appointment with the Transplant Team this coming Wednesday so they can evaluate how my body is doing on the Lasix. I do not anticipate any changes to the med just yet. Maybe down the road that will happen.

Again, look for the update to this entry for yesterday's labs.

Good Health to All!

ScottW

Post-Transplant Update: 22 August 2017

All in all, Monday's labs came back looking pretty good.
Let's review them...

21 Aug Labs

Tac: 6.8 (-2.8 from 17 Aug)

Creatinine: 1.94 (+0.22)

WBC's:  3.0 (+0.5)

RBC's:  3.76 (-0.01)

HCT: 34.8 (+0.3)

Lymph: 13.6 (-3.50)

Lymph ABS: 0.4 (NC)

GFR: 38 (-6)

BUN: 40 (-3)

Glucose: 99 (+2)

Phos: 3.8 (+0.5)

*NC = No Change

*NR = Normal Range

      = Good, or Positive change

      = Bad, or Negative change

      = Within NR

The Tac, though technically still in range, took a precipitous drop; hence both the red and green markings. As a result of such a steep, sudden decline, my Tac intake is now 1.5 Mg both Morning and Evening.

The Creatinine is a touch too high, with 1.80 being the current top-end number. The increase of the Tac should pull this number down.

As I stated before, the Lymphocyte number will bounce around. The latest value is a reflection of that. I need to ask the Transplant Docs why, when the WBC's go up, the Lymph numbers drop. One would think the elevation or declination of the one would coincide with a similar number of the other.

Lastly, the GFR is just a touch low. This will also bounce around, though as time goes on, should stabilize, as well.

Tomorrow morning is my Echo exam and Cardiology appointment. I am expecting the Echo to be negative for fluid, though I need to discuss the damage to my heart as I sometimes feel out of breath when laying or after sitting down. I really don't like how this feels...especially since I have never had any cardiac issues in my life. But, it is what it is, and we just have to move forward.

My BP has risen slightly now that my Tac has increased. This will be mitigated with meds adjustments, and should eventually settle into a normal and sustained range once I am on the long-term meds with little or no adjustments from week to week.

And...that's all there is for today. My next entry will go over the Echocardiogram, Cardiology visit, Thursday labs and the next Kidney Clinic--also on Thursday. Look for that entry on either Thursday or Friday.

Good Health to All!

ScottW