Post-Transplant Rejection Update: 17 October 2020

Although most of my week did not go as planned, one thing turned out better than expected.

I went to neither of my usual appointments with my Chiropractor as he had a family medical emergency, and was gone from his practice all week. My back is doing OK without the adjustments, but my feet have ramped up a bit without the acupuncture. I am scheduled for Tuesday once more.

Yesterday I received the second of the two Hepatitis B inoculations. It went in my L arm, and was given IM (Intermuscular). Aside from a little soreness and some slight nausea, there were no appreciable S/E's (Side Effects).

My labs this week were once more a combination of terrible and good. Let's review them...

13 October 20 Labs:

*Creat:   4.33 (-0.11) *As a reminder, this number is awful!

*HCT:   32.1 (+1.0) Low

*Hemo:   10.5 (+0.7) IR

*Lymph:   4.4 (-0.3) Extremely Low

*Lymph ABS:   0.4 (+0.1) Extremely Low

*RBC:   3.67 (+0.24) Extremely Low

*WBC:   8.1 (+0.9) IR

*Ketones:   Negative

*BUN:   53 (-9) Extremely High

*CA:   10.2 (+0.4) High

*GFR:   14 (NC) IR

*Gluc:   122

*K+:   4.1 (-0.1) IR

*NA+:   137 (-2) IR

*Phos:   5.1 (-0.1) High

*Prot:   7.1 (+0.2) IR

         NC= No Change        IR= In Range

No lab values moved much from two weeks ago, and the good [pretty much] remain good, while the bad continue to waffle around. Neither good news, nor bad, from this latest round of labs.

Next, my visit to the Vascular Surgeon had an unexpected outcome. My R arm [where the artificial loop graft is located] was scanned extensively using an ultrasound, and it reveal what was never anticipated...that my graft is not only fully functional and free of any blockages, but is flowing at an even higher rate (2,009) than it was when it was first placed (1,700+)!

So, no surgery is necessary, and the graft is ready for whenever I must start dialysis.

I asked the surgeon why I can no longer feel it much within my arm, is weak on palpation of the venous end, nor can I actually hear it when everything around me is quiet. The explanation...weight gain adds muscle and fat around the graft essentially insulating more than it was previously when I weighed 25 Kg's less. That's it.  This development takes a lot of stress off of my mind knowing that another painful surgery will not happen!

The headaches have ramped up, involving both the TMD and deteriorating body chemistry. I am putting up with some of the headaches, to a degree, by only using Exedrin as much as I tolerate can the pain. As has been the pattern, the worse headaches have been coming towards the evenings; but not always. The past two days I have awoken to bad headaches, but luckily have been able to manage them with meds. No, this isn't because I haven't been able to get my usual acupuncture; these are happening despite the acupuncture. As I have postulated previously, based on previous experience with my original kidneys dying, the headaches will only increase; but at least I know that this time.

On other subjects, my appetite remains good, and foods are only slightly off to my taste.  My weight remains hovering between 118.5 Kg and 119 Kg.   

So far, my dreams remain completely under my control. I don't know that they won't stay that way because last time I went through renal failure, there were so many unknowns, so many surgeries, and feeling so horrible for so many years. Whereas this time around, I am healthier going towards dialysis, and the only surgery I should have will be my next transplant. This knowledge is a huge mental advantage!  I am not saying that things won't get difficult in the months and years ahead of transplant; but at least I have the advantage of previous experience, and knowing just how much worse everything could be.

That's all I have for now.

Coming up this next week are two Chiropractor visits (hopefully), and an overdue yearly follow-up with my Dermatologist.

Until the next entry, stay healthy, stay safe and enjoy the beautiful Fall weather!

Good Health to All!

ScottW

Post Transplant Update: 31 March 2020

Last week [during my now weekly lab tests], my Creatinine came back at 2.66; a drop of 0.20 from the retest the week before.
Today, my Creatinine took a not-so-nice jump of 0.62, to end up at 3.28. Plus, my BUN rose ten points, and my GFR dropped five. Both of those last two numbers moved in the wrong direction.

So, there is something wrong with the kidney.

I received a call from my Transplant Coordinator, asking if I was feeling OK; which I am. She was going to check with the Clinic doctors to see how to proceed. As of this writing, I have not yet heard anything back.

Also, last week, the Parathyroid surgeon ordered me to increase my calcium intake by 1,000 mg per day. Additionally, he ordered a Vitamin D test to see if my body is lacking proper Vitamin D. The test results for that have not yet been posted.

I do not yet know how anything will play out; but I suspect that either an ultrasound or a renal biopsy (or both) are in my near future.

As it has been two and a half years since the renal artery was opened, I am thinking that it is maybe time to have that opened once more. (But that is only guesswork.)

Anyhow, I will keep you informed.

Stay safe!
Practice social distancing, as required!
Wash your hands often!

Good Health to All!

ScottW


Update!
**(01 April 20) The test results for the Vitamin D came back. Here are the results with previous test history included:

(Normal Range 30-80)

31 Mar 20:   43     

11 Jan 18:   33

25 May 17:   46

22 May 17:   48

The level is within the needed range, so it would appear that Vitamin D deficiency is not the issue. I will await word from the doctor as to what, if anything, is next.

Post-Transplant Update: 19 March 2020

It has been more than just a couple of weeks since my last entry, but there really hasn't been much happening as I seem to finally be stabilizing...at least somewhat.  Add in the whole Covid-19/Coronavirus/Wuhan Virus pandemic, and I have done very little lately.

For today, let's begin with my latest labs...

17 Mar 20 Labs

*Creat:   3.0 (!)

*HCT:   36.2 (-2.5) IR

*Hemo:   11.3 (-0.5) IR

*Lymph:   7.5 (-6.0) Very Low

*Lymph ABS:   0.5 (-0.4) Very Low

*RBC:   4.03 (-0.20) Very Low

*WBC:   6.0 (-0.3) IR

*BUN:   37 (-1) Very High

*CA:   9.2 (+0.2) IR

*GFR:   22 (-3) Extremely Low

*Gluc:   96

*K+:   4.1 (+0.1) IR

*NA+:   (139 (+1) IR

*MG:   2.3 (+0.2) IR

*Phos:   4.1 (+0.1) IR


*Urinalysis:

Appearance:   Normal

Color:   Normal

Glucose, UR:   Negative

Hgb,UR:   Negative

Ketones, UR:   Negative

Leuk Esterase:   Negative

Nitrite:   Negative

pH, Urine:   6.0 (Normal Range is 5.0-8.5)

Prot, UR:   Negative

Specific Gravity, Urine:   1.014 (Normal Range is 1.003-1.030)

Also, my Parathyroid surgeon ordered a follow-up PTH (Parathyroid Hormone) test. This came back as:    

*PTH:   108 (Desired range 90-100)

Surprise, surprise....my Lymphocytes dropped...again. (The yo-yo ride continues!)

Though there was a small decrease in my RBC, it is fairly minor, and I am not yet concerned about it. If it drops further by next month, I'm sure my doctors will address the issue.

My Urinalysis was nearly identical the last month. The only difference was a minor decrease of the Specific Gravity. No Glucose, no Ketones and a good pH.

The big news from my labs is the Creatinine. Lastly month (Feb), it was at 2.71. This month, a jump of 0.29 happened, leaving me at 3.00; which is rejection territory.

I immediately called my Kidney Clinic coordinator to ask what they might want me to do. After speaking with the doctors, I was told to drink a lot of water that night (Tues.), then repeat the Renal Function Panel the next morning. So that evening, I drank three full liters of water...and got up repeatedly during the night. :(

Yesterday morning I went back to the lab and had my second draw at it came back lower at 2.88. The Kidney Clinic doctors want me to do weekly labs for at least a month to keep an eye on the Creatinine level, and act accordingly should it rise again.

In the meantime, on the days I take the diuretic Torsemide, I am to drink at least three full liters of water, plus any other fluids. This might help keep the Creatinine from rising.

So, mixed results this month on my labs. Mostly good news; but a few zingers, too.

I also had my monthly infusion of Belatacept on Tuesday. The stick (canulation) went well, and the infusion had no complications or side effects.

My headaches have been somewhat better. Most days they are controlled by just using Excedrin. But in the evening, they are ramping up. All in all, my T3 usage is just over two per day; so I am seeing significant progress on getting them under control.

Now, with the Covid-19/Coronavirus/Wuhan Virus, there is much misinformation, along with great amounts of disinformation that is doing nothing but scaring people, and causing unnecessary fear and anxiety. Grocery stores are cleaned out, toilet paper is being hoarded--for no reason, I might add, other than hysteria caused by bad information--and the stock market is crashing. It would seem to be a time of panic and of a global human extinction event. 

Only, it isn't. 

True, the virus has the potential for large-scale deaths, if the appropriate precautions are not taken by the countries affected. However, because of decisive actions, it has killed far fewer people than the yearly flu; but you wouldn't know it from the social media hysterics of the uninformed.

If you want the real information that is actually helpful, go to the CDC website. They have accurate stats and info on the virus. Plus, the White House is keeping American citizens well informed on many fronts. THESE are the sources everyone should be listening to, and completely avoid the paranoid hysteria on social media.

As for me, now being in the "Sensitive Class" due to taking immunosuppressants, I am not the least bit worried about this virus.

Why? because I am already doing pretty much everything that needs to be done. The only things my wife and I added are: 1) She wears a mask while out in public.  2) We both are washing our hands a bit more frequently.  3) After returning home from shopping or being around others, we both immediately put our clothes in to wash, as laundry soap immediately kills the virus. That's all we do differently. 

I already practice social distancing because of my unstable immune system, and my wife was given permission by her boss to work from home so that there is no chance of her potentially bringing home the virus from someone at her work.

So no worries about this virus from me!

On that note, I will wrap up this entry.

Stay safe.

Practice Social Distancing whenever possible.

Follow the advice of the CDC and the experts on the President's panel.

And PLEASE...remember that this brief period of isolation will ultimately result in the Covid-19 virus becoming just a memory.

Good Health to All!

ScottW

**(28 March) In this weeks' lab draw, my Creatinine level dropped from 2.88 to 2.66. As before, I drank extra water the day before the test, which produced the results I was hoping for.

Post-Transplant Update: 19 April 2019

I am getting to this post later than I had intended due to having that tooth crown placed, and the ensuing headache that resulted. So, let's start with labs...

16 April 19 Labs:

*Creat:   2.77 (+0.12) 

*HCT:   35.5 (-0.6) IR

*Hemo:   11.1 (NC) IR

*Lymph:   13.8 (-1.5) Low

*Lymph ABS:   0.9 (-0.1) Low

*Neut:   76.8 (-1.9) High

*Neut ABS:   5.0 (-0.1) IR

*RBC:   3.94 (-0.02) Very Low

*WBC:   6.5 (+0.3) IR

*BUN:   42 (+2) Extremely High

*CA:   9.5 (-0.5) IR

*GFR:   24 (-2) Extremely Low

*Gluc:   95 (Normal 80-100)

*K+:   4.8 (+0.4) IR

*NA+:   141 (+3) IR

*Prot:   ??

*MG:   2.2 (NC) IR

*Phos:   3.9 (-0.2) IR

*PTH:   121 (+59) Very High

          NC= No Change     IR= In Range

Though there has been small drops in a few of my numbers, I am particularly interested ion the latest Parathyroid Hormone (PTH) reading. Last month it was terrific. This month, not at all. As per previous physician instructions, I called the surgeon's office to relay the PTH and Calcium readings. Rather than immediately adjusting my calcium intake, the doctor wants to see me on Monday. Plus, he will be looking at the still-undissolved sutures in my neck, and will possible remove them, as well.  I will update you next week on the outcome of that appointment.

As far as the other numbers with movement in the wrong direction, I have a sneaking suspicion that these are a result of the higher PTH level. 


Urinalysis (UA) 16 April 19

Appearance:   Normal

Color:   Normal

Glucose, UR:   Negative

Hgb,UR:   Negative

Ketones, UR:   Negative

Leuk Esterase:   Negative

Nitrite:   Negative

pH, Urine:   6.0 (Normal Range is 5.0-8.5)

Prot, UR:   Trace

Specific Gravity, Urine:   1.01 (Normal Range is 1.003-1.030)

Aside from the slight elevation of the pH level (5.5 up to 6.0), the UA continues to clearly show that the kidney is filtering well. (YAY!)

As I stated at the very beginning of this entry, I finally had the tooth crown placed over the broken #19 tooth. The crown fits perfectly, and is level with the other teeth around it. Unfortunately, the headache I had from the initial dental appointment was only just beginning to ease up; and even the moderately light pressure exerted on my jaw was enough to send the headache pain spiraling upward once again. Luckily, the crown placement (and cleanup of extra cement) only took about 30 minutes, so I am hoping that the latest increase in headache pain goes away sooner than before. 

Oh...just FYI, before the latest appointment, my headaches were averaging about a solid 7 (out of 1-10), after nearly two weeks of nothing but 9-10's. This time, I came home with a 10+, and it is now averaging an 8.  :o(    :o(    :o(

Next, my energy level has remained up despite the elevated PTH. This is an excellent development! It tells me that I have not only increased some muscle, but also some stamina, as well. Though I still get exhausted doing chores, I continue cooking every day, as well as seeing that the house remains in good shape. So...definite progress!

I know that I had a few other things to tell you about, but my headache is hurting too much--despite pain meds--to both remember what else I has, and to keep typing up this entry. So, I'll quickly wrap this up...

Again, I will let you know how Monday's appointment goes. Until then...

Good Health to All!

ScottW

Post-Transplant Update: 27 March 2019

**Reminder...This blog reflects MY personal journey with PCKD, dialysis and renal transplant; treatments, medication use, tests, etc. Every kidney patient is different, so be sure that you follow your physicians' advice and treatment plan. Only they can know how best to proceed for any individual patient.
Everything that has happened to me following transplant is NOT the normal course of events, so it should never be construed to reflect every transplant patients' journey.


As I have little to pass on today, this entry will be relatively brief.

To start, the one-month follow-up with the Parathyroid doctor went well. He was extremely pleased with my labs (PTH of 62, CA of 9.9), and with the fact that my energy has increased. Also, after examining the scar, he saw a several pieces of suture that have not yet fully dissolved. Of these, he removed two sections, and left another three as they were too deep in the skin to safely excise. For the remainder, I am to put a Neosporin-type gel on the incision for three or four days in order to help the sutures finish dissolving. After that, to put lidocaine cream on the incision to help alleviate most of the discomfort I am still feeling.
(When I first applied the gel, I could feel the ends of the remaining sutures under my fingertips, so I was sure to do this very gently so as to avoid unnecessary irritation.)

I am also to reduce my intake of Calcium (Tums) from 1,000 mg every four hours (or 6 each day), to 1,000 mg every six hours. In one month--after my next labs--I am to call the office's nurse and ask of I need to adjust the calcium intake again, or leave it alone.

Lastly, the doctor volunteered a bit of information that made me appreciate his work even more than I already do. When he did his surgical training, he was under the tutelage of "the best EENT surgeon in the world, at that time." I was amazed by his comment, then remarked to the doctor that throughout my whole kidney journey, I keep having doctors come into my life that are either tops in their field, or who trained under top physicians or programs. The doctor then remarked, "You are both blessed and extremely fortunate for that to happen."

Definitely!


As far as my day to day, another indicator that my energy is up is that I have made dinner (from scratch) every night for the past week. Plus, I even fully cleaned the kitchen after eating a few times, which I haven't done since probably 2013, or so. 

Next, my headaches have taken an uptick this past week. While that is disappointing, I have to take into account that these headaches are only TMD involved, instead of having some that hit without any jaw popping, as was the case before the Parathyroid glands were removed.  On average, my T3 use has increased to four tablets per day (plus a 500 mg Excedrin each dose). Even with that increase, I am still having to tolerate quite a bit of headache pain all day. 
So, while the headaches have increased, there is only a single cause now, rather than having a second, and wholly unrelated factor [to the TMD] involved.  This result only confirms that the high PTH level was causing additional headaches.

I forgot to have my wife take pictures of me as my starting point reference now that I can begin moving forward, physically. I will get these done, and post them when I do.

Lastly today, I received some sad personal news yesterday. My only brother died in his sleep over the weekend. He was 59 years old. The cause of death is unknown at this time; but he was dealing with MS (Multiple Sclerosis), and apparently, had been struggling with ETOH (Alcohol) for a number of years. He was unmarried, and had no children.

And on that unfortunate note, I will conclude this entry. I will write again next week.

Good Health to All!

ScottW

Post-Transplant Update: 20 March 2019

This week, I will start off talking about the obvious benefit of the now-removed dysfunctional Parathyroid glands. I had my monthly labs yesterday, and the fresh Parathyroid Hormone (PTH) level has dropped from 103 (26 Feb 19) down to 62.
That number is essentially middle of the range for a normal PTH reading. 
This is fantastic news!

Next up, I had that dental appointment, and the tooth that had a piece come off is NOT affected other than having the broken section on the cheek side of the tooth. The dentist told me that the area had a clean break, and I would need a crown to cover it. I should be getting that taken care of in the next few weeks.

On the post-surgery side of things, the scar is looking better. I took the following picture yesterday; just under four weeks after the surgery...

As far as other things affected by the Parathyroidectomy, my nausea has reduced to almost zero, my headaches, though up and down this past week, are showing a definite improvement. In fact yesterday, I took only a single T3 and Excedrin all day. That's all.
Again, the downturn could very well be coincidental [in regards to the TMD symptomology]; but high PTH levels can cause prolonged unremittent headaches, so time will tell if the is real, or not.


I had my March Belatacept infusion yesterday, as well. The stick and the infusion were both done well, and I have had zero side effects once more.


19 Mar 19 Labs

*Creat:   2.65 (-0.09)

*HCT:   36.1 (+0.9) IR

*Hemo:   11.1 (+0.1) IR

*Lymph:   15.3 (+1.1) IR (Very Low End)

*Lymph ABS:   1.0 (+0.2) IR

*Neut:   78.7 (+0.5) High

*Neut ABS:   4.9 (+0.7) IR

*RBC:   3.69 (+0.06) Low

*WBC:   6.2 (+0.9) IR

BUN:   40 (-7) Extremely High

*CA:   9.9 (NC) IR

*GFR:   26 (+1) Extremely Low

*Gluc:   96

*K+:   4.4 (-0.1) IR

*NA+:   138 (NC) IR

*Prot:   7.0 (+0.3) IR

*MG:   2.2 (+0.3) IR

*Phos:   4.1 (+0.5) IR

**PTH (Parathyroid Hormone):   62 (-39) Middle of the Range
         NC= No Change     IR= In Range

On the labs above, after a series of elevations [possibly due to the high PTH], the Creatinine is coming down. I am still hoping this drops to around the 2.0 mark.
The Hematocrit, Hemoglobin and Red Blood Cells all showed more improvement now that the Parathyroids are out.  As far as the RBC's, a normal level is 4.50 to 5.90; so I still have a ways to go, but at least now that number is consistently increasing. 
Lastly, the Lymphocytes are better--instead of taking a dive; such as has been the case since the rejection episode. Plus, the Lymphocyte Absolute (Lymph ABS) rose to a solid 1.0 for the first time since last Spring. A key indicator of immune system health, I was extremely pleased to see this lab value finally hit that mark!

Next, this months' UA results:

UA 19 Mar 19:

Appearance:   Normal

Color:   Normal

Glucose, UR:   Negative

Hgb,UR:   Negative

Ketones, UR:   Negative

Leuk Esterase:   Negative

Nitrite:   Negative

pH, Urine:   5.5 (Normal Range is 5.0-8.5)

Prot, UR:   Trace

Specific Gravity, Urine:   1.01 (Normal Range is 1.003-1.030)

These numbers are terrific! Aside from a trace of Protein, this  reading is exactly what it was in February; which indicates that the kidney continues to process fluids properly.


My wife and I were discussing my weight gain since my transplant. At that time, I went into the hospital weighing 93.3 Kg.
With the steroids involved with transplantation, with the renal occlusion, with the hernia surgery and then the rejection episode, I have put on about 30 Kg's. Now of that amount, about 7 Kg's can be attributed to muscle increase, as I was moving around more.
The rest, water gain from high steroid therapy, is what I have to remove. We estimate that I have about 50 pounds to lose for my ideal muscle weight. That is about 22.7 Kg's.

Add in anticipated muscle gain, and I want to be at 235 pounds, or 106.8 Kg.

Now that I have that number, I have a hard target to shoot for, instead of an iffy 'about here' target that would likely change constantly. With Spring here, and my strength slowly increasing, it is time to get walking again. My 10-step plan for getting in shape is still valid...I just have to adjust the timeline a bit.
And in anticipation of that journey, I am going to humble myself and post a profile pic of how I look now for comparison against when I achieve my weight loss and muscle mass increase. I am planning on posting that next week.

Speaking of next week, I have my one-month follow-up with the doctor who removed the three parathyroid glands. We will discuss the latest PTH number, and most likely adjust my calcium intake. Of course, I will inform you of all necessary information from that visit.

Aside from that appointment, I  won' have (amazingly enough) another doctor visit--scheduled, at least--until May for my 2-year Kidney-versary, then early July for my local nephrologist. FINALLY!  :o)

And with that, I will end this latest entry.

Until next week...

Good Health to All!

ScottW