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.***