Post-Transplant Update: 05 September 2019

My latest monthly labs were done earlier this week, as well as was my monthly infusion of Belatacept.

Before I get to that, a few updates from my last entry.

As mentioned previously, the skin tags and cyst that were removed by the Dermatologist were sent to pathology. One week later, the results came back as completely benign on everything, so there is no danger of possible skin cancer development.

The sutures took almost two full weeks to dissolve, and the cyst removal site is healing nicely. It is still too early to determine if the scar will be obvious, or miniscule. My foreheard though, is no longer painful; which is great!

The sites [in my armpits] that the tags were removed took until last week to stop hurting altogether. The sites are still visible, and may be for a while yet.

Also, in early August I began to wean myself off of Protonix (Pantaprozole), which helps alleviate an upset stomach due to all of my meds. I tried this because I know that long-term usage can lead to gastrointestinal issues, which I want to avoid. In total, I took three weeks to eliminate this med from my daily intake.

Unfortunately, within a few days of starting this process, I began to have low grade nausea. By the time I was down to one med every three days (then no med afterwards), I was feeling nauseated most of the time; plus I would burp up stomach acid, and taste iron, as if I was burping blood. Additionally, my energy level plummeted, and aside from cooking, I was getting nothing done around the house from day to day.

At this point I discussed this with my wife and decided to go back on the Protonix until such time as the heart meds I am on (Isosorbide, Hydralazine, Carvedilol and Sodium Bicarbonate) are finally eliminated from my daily use.

This decision came about because the nausea, nasty burps and general malaise had all happened one year ago (and after the rejection episode) when I was ordered to stop using the Protonix[yet still taking all of the heart meds]. Within a few days, the negative effects had kicked in, and the Kidney Clinic docs told to to restart the Protonix; which immediately eliminated the issues.

And just like a year ago, as soon as I began using the Protonix again, all the negative symptoms were gone; though it took about a week for my energy to improve.

OK...now the lab results:

03 Set 19 Labs

*Creat:   2.59 (+0.15) 

*HCT:   35.6 (+1.1) Slightly Low

*Hemo:   11.2 (+0.3) IR

*Lymph:   7.9 (-4.9) Very Low

*Lymph ABS:   0.6 (-0.2) Very Low

*Neut:   81.3 (+0.4) Very High

*Neut ABS:   5.6 (+0.3) IR

*RBC:   3.95 (+0.09) Extremely Low

*WBC:   6.9 (+0.4) IR

*BUN:   35 (-4) Very High

*CA:   9.5 (-0.3) IR

*GFR: 27 (-1) Extremely Low

*Gluc:   99

*K+:   4.6 (+0.1) IR

*NA+:   138 (NC) IR

*MG:   2.0 (+0.1) IR

*Phos:   3.4 (-0.4) IR

*Prot:   No Longer taken.

          NC=No Change     IR-In Range

*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:   1.013 (Normal Range is 1.003-1.030)

(*This reading is exactly the same as last month!)

The Creatinine , though up slightly, appears to be stable; which is awesome!

The RBC's rose slightly [following last months' drop], so it was nice to see this.

My Calcium dropped slightly to more of a mid-range that the Parathyroid surgeon was wanting. This means that my lower intake of Calcium (from 4,000 mg/day to 2,000 mg/day) was successful. I called the doctor to ask if he wanted anything changed, and was given a 'No'.

On the side to worry about are the Lymphocytes and Lymph ABS readings. I had been hoping that both would rebound from the drop we saw in August. The large drop this month was definitely troubling. Once again, I must take the now all too familiar precautions until it strengthens once more. While I am probably not in too much danger because of the White Cell count, it is still prudent to be cautious and not test the strength of my immune system. Any exposure to the wrong bacteria, virus or other compound could lead to my losing the kidney. So, just like the Transplant Team doctors, I choose to err of the side of an abundance of caution!

Overall, there is a lot of stability. I am definitely encouraged by the constancy of the Urinalysis which, for the third month in a row, showed that the filtering ability of the kidney is working well.

What else...

The monthly infusion [of Belatacept] went well; aside from needing to scan my L arm for a good venipuncture site. There were no complications, no side effects. And, as my wife quipped, I "get to live another 28 days!"

My sleep has been good the past few weeks, but the quality of that sleep has not. As to why this has been happening again, I do not know. I am sleeping between 7-8 hours each night, am controlling my dreams well, and get back to sleep after I have to get up to relieve my bladder (between 1.0 L-1.6 L per night). In other words, there is nothing obvious that is impacting my ability to get restful sleep; which leaves me wondering why it is happening at all.

The TMD headaches have been up again. However, like the previous month, I was able to make the 30-day supply of T3's last the entire month; which is great! However, in order to achieve that, I have been using straight Excedrin too much, trying to tolerate the headaches, which only ends up making them worse. Sometimes, trying to be judicious in med use works against me in the ongoing fight to reduce these headaches. 

However, if you do not try to use OTC analgesics, you will never know if the headaches are reducing.

On the other hand, there were several days in which the headaches were minimal, and I used only one T3, or even none for the day. Again, this gives me great hope that the TMD symptomology will settle down once again.

Neuropathy... On it goes. About the only good news I have on this front is that I have not had to soak my feet in an ice bath in a couple of months now. And that's about it.

I think that that is all I had wanted to mention today.

Upcoming: My next visit with my Nephrologist on 17 September. 

I may not get an update done until then, so don't be surprised if I don't.

Until next time...

Good Health to All!

ScottW


Oh...
I forgot to mention that yesterday, I finished the latest 1,000 piece puzzle. In total, I spent approximately 15.5 hours to complete it. The picture of it is below...

Post-Transplant Update: 16 August 2019

I am a couple of days late getting this entry done for two reasons:

First, the Dermatologists' office called on Monday asking if I could move my appointment from Tuesday to Wednesday, which I did.
Second, I ended up having a minor procedure, and I have had a terrible headache ever since, which prevented me from getting this blog done yesterday.

I had done research on the best possible Dermatologist in my area, so I was confident going into the appointment that I would be happy with his medical care and expertise.

After answering a few questions on my history [asked by the nurse], I changed into a gown; taking everything off except for my underwear.
When the doctor came in, he had obviously done a quick review of my history and began clarifying several points that pertained to my visit. He then began the exam, which was thorough.
He noted an increase of moles on my back, which are due to aging, so he wasn't concerned about these. He also noted the small cyst on my forehead, as well as tags (skin growths) in both armpits, with one being larger than all the others.
After asking me about several areas around my skin, he stated that it "actually looks really good for a man of your age." (I like that!)

He also asked if I wanted the tags removed and the cyst excised. As far as the tags, I told him that, though they never bother me, my wife hates them, so go ahead and remove them. With the cyst, I told him that I'd like it removed, even though it rarely produced anything. So, the doctor told me that he could do it that day, to which I assented.

The nurse ended up removing the tags, which was easily done. She applied a numbing agent topically, then a small Lidocaine injection to further numb the area of all the tags. She then used a clamp to pull the tags away from the skin before cutting each off with scissors. None of the tags hurt during the removals.
Here are the tags:

14 August 2019

The nurse held the tags in her hand for scale. The largest one was in my L armpit.

The spot from which the largest tag was removed  kept bleeding, even after a coagulant agent was applied, so the nurse put a compress bandage on it. The other site bled only minimally.

With that done, I was instructed to change back into my clothes, then was taken to a procedure room for the cyst removal.

I was laid back, made comfortable, draped with sterile coverings and then the nurse applied the same numbing agent to the area the doctor had previously marked on my forehead, then again followed with a lidocaine injection. After this, the doctor came into the room, explained the procedure and immediately began. In all, the cyst excision took all of about seven minutes...including suturing. 

14 August 2019

(Sorry that it's not quite in focus.) 

This is the dermal area that was removed. The cyst is the 

yellow sack on the middle left of the excised tissue.

14 August 2019

Site of the tissue and cyst excision.

The nurse applied a compress dressing, then sat me up. I got to choose the color of the Coban gauze that would hold additional pressure on the compress bandage--I chose neon orange!

14 August 2019

Rockin' the neon orange headband!

After that, we discussed instructions for wound care. I was to leave on the compress and Coban for two full days. After that, to remove the bandage while showering [so that it comes off easier], then very gently cleanse the area, and lightly pat the area dry.
After that, I will apply a vinegar/water solution soaked gauze pad twice each day for 10-15 minutes each, and do this for one week. Plus, I was given a tube of a Vaseline-type gel to apply to the area in order to keep the sutures moist and dissolvable. This too will be done for at least one week; or more, if needed.
Also, I am taking the antibiotic 'Keflex' three times each day for one week.  The doctor had given me the choice of the antibiotic, or risk of an infection. I relayed to him my latest Lymphocyte count (12.8), and opted for the antibiotic as my body might not be able to fight a possible infection; to which the doctor heartily agreed with me.

Lastly, the doctor had stated earlier that both the tags and the cyst (which was sebaceous)  would be sent to pathology just to be sure that everything is benign, and that nothing weird was going on with either. I should hear back on the results sometime next week.

At this point, I was given the clearance to go.

The numbing for the procedures wore off within an hour. Which the armpits hurt only minimally, the forehead was pounding; which made my headache ramp up.  Plus, the pressure from the Coban headband added pressure against the scalp, which get pretty uncomfortable. I just utilized Excedrin every four hours, and added a T3 if the headache warranted. 
Yesterday, the site was pounding despite my use of the analgesics, and I felt tired and lethargic all day; which is no surprise. After all, however simple, cyst removal is still a surgery, and is trauma, so the body needs time to recover.
Both Wednesday night and last night my sleep was extremely restless; which only adds to the fatigue.
This morning, I did as instructed and took off the headband--pre-shower, and the compress. After two days, the initial swelling is gone completely, and the site looks pretty good.

16 August 2019

Two days post-cyst removal.

So now, I will do the aforementioned wound care for the next week. The scar should be small and barely noticeable once it has fully healed.

I do not have to go back to the Dermatologist for one year; unless something changes dramatically anywhere on my skin.

Finally, I get to add yet one more surgery/procedure to the long list, as well as yet one more scar to the ever-expanding repertoire that is so prodigious! (For the record, I believe that this now brings my scar total to 52...and counting!)

And there you have it...All of my latest fun in one fell swoop!

I won't write anything else here today so that I can make an entry next week.

Good Health to All!

ScottW

Post-Transplant Update: 07 August 2019

Reminder: This blog reflects my individual experience with Polycystic Kidney Disease, Dialysis, Transplant and post-Transplant. How any person approaches their treatments is up to their doctors and various healthcare staffs. Please, always consult with your physicians on every aspect of your healthcare! Only they know how best to treat you!

I decided to wait to type up this entry because of yesterday's monthly labs and Infusion of Belatacept. So let's start there!

06 Aug 19 Labs:

*Creatinine:   2.44 (-0.34) A nice drop!

*Hematocrit:   34.8 (-1.9) Low

*Hemoglobin:   10.9 (-0.7) IR

*Lymphocytes:   12.8 (+2.2) Low

*Lymphocytes ABS:   0.8 (+0.1) Low

*Neutrophils:   80.9 (+2.1) High

*Neutrophils ABS:   5.3 (NC) IR

*Red Blood Cells:   3.86 (-0.19) Extremely Low

*White Blood Cells:   6.5 (-0.2) IR

*Blood Urea Nitrogen:   39 (+1) Very High

*Calcium:   9.8 (-0.2) IR

*Glomerular Filtration Rate:   24 (+4) Extremely Low

*Blood Glucose:   103

*Potassium:   4.5 (+0.2) IR

*Sodium:   138 (-4) IR

*Magnesium:   1.9 (-0.1) IR

*Phosphorous:   3.8 (-0.5) IR
          NC=No Change     IR=In Range

*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:   1.013 (Normal Range is 1.003-1.030)

For the first time in a long while I had a nice drop in my Creatinine! It was both surprising a pleasing to see this drop.

The Lymphocytes rebounded back a bit; which I was hoping for. I'm glad that they did not drop any further, thereby putting my immune system at risk, once again.

My RBC's dropped below 4.0...again. I cannot say that I am surprised at this as my energy the past three weeks has been less than earlier. This lab would certainly help explain that.

I also highlighted the Calcium because, after receiving the instruction to decrease my Calcium intake by half, this lab value dropped, as well. I have already notified the doctor about this drop, and if he has further instruction, his nurse will call me.

Last, even though I forgot to include July's Urinalysis in a previous entry, I am very pleased to note that the August reading is exactly  the same as July! Talk about stability!

Both my BUN and GFR continue to be on the wrong side of their respective scales. As far as I am aware, there isn't much I can do to help this, as it is the kidney that is responsible for both numbers. 

So, despite a few abnormalities, my labs look good! 

This months' Balatacept infusion went off without a hitch. Even the IV canulation was done on a single attempt; so no painful bruise this month! And, no untoward side effects, either.

My next doctor visit will be next Tuesday, 13 Aug, with a Dermatologist. Aside from the initial skin exam, I do not know what else might happen. I will write it up for you next week.

**As I was typing, I received a call-back from the nurse of my Parathyroid doctor. She relayed that the doctor had heard my voicemail update, and that he really appreciated my letting him know how my Calcium level is progressing. Also, that I am to continue with my current Calcium intake.

Two weeks ago, I had the thought to try to wear my regular shoes when my wife and I went out on errands. The result was that within a half of an hour, my feet were burning, and I had several tender spots on both feet become more and more aggravated. By the time we arrived back home (after about four hours), my feet were painful, hot and tired. The shoes cam off in the garage, which brought immediate relief; though it would take several hours and an ice bath to cool the feet off. 

So, even though I got better back support with my shoes [when walking], the burning and pain were almost too much. Until the local weather cools significantly, I won't be trying that again anytime soon. For short walks...maybe. But we'll see.

With that new-found knowledge [and the terrible heat of mid-summer in the high desert], I have decided that daily walks are out; for now. In the meantime, I had the inspiration that will help me still get exercise, despite the heat and the shoe problem...

...In our home, we have three levels: Entry; Living; Bedrooms. On the south end of our place, there are three sets of stairs totaling 28 steps. I can walk the stairs from bottom to top and down again multiple times per day. This is in addition to any up and down I have to do in my normal course of every day. Plus, doing this solves both the heat and the shoe issues because I can do this in bare feet, and in the air conditioning. My first day of doing this exercise, I did the stair circuit four separate times. Since then, I have done at least that many circuits, plus once or twice going 1.5-2 circuits in succession; though the longer ones wore me out pretty good! 

I will continue doing this exercise every day, which will help my strength, stamina and energy, in addition to saving my feet from lots of pain.

The TMD headaches have been consistent the last few weeks. Though controllable with T3's and Excedrin, they are always hurting. Plus, my jaw has been clunking relentlessly, for some reason. As I have explained many times before, I will just keep doing what I have been. Right now, I am in what I term, an "Up Cycle" in regards to the headaches. Lately, the Up Cycles have been tempered with intermittent "Down Cycles" wherein I am able to take little meds because of headaches. 

The battle of TMD dominance wears on...

My urinary output is overall, pretty consistent. However, as I've discussed before, there are times when my daily output does NOT equal my input; such as over this past weekend. On both Saturday and Sunday, I took in about 110 ounces of fluids (about 3.3 Liters). Both of these nights saw my output at 300cc's and 650cc's respectively; leading to a weight gain of 8/10's Kg and 6/10's Kg which ballooned my weight from 125.2 Kg to 126.6 Kg in two days. So far, I have failed to eliminate that fluid; and in fact gained more. As of this morning, I am at 126.9 Kg.

This really frustrates me because I am working to not fluid overload from day to day, yet get the proper water I need. However, the last two nights I have voided 1.45 Kg's (1450cc's) and 1.5 Kg's (1500cc's) respectively. I just need fewer nights that lead to increased water retention.

Over the past two weeks my evening blood pressure reading have been elevated, which I cannot account for other that the just-discussed water retention; which would put additional pressure on the heart. My pulses have been great; averaging in the mid to high 60's both morning and evening. This has just been about the blood pressure.

I am taking all meds as prescribed, so that is not the issue. Plus, my nightly intake of Clonidine (specifically for a BP over 140 systolic) has increased from once every five or six days, to every evening. If this trend continues, I'll be calling the Kidney Clinic to notify them, and my Nephrologist to see what he wants to do.

And that is all of the pertinent information I wanted to share with you today. Again, I will be writing next week following my Dermatological appointment.

Have a terrific week, everyone!

Good Health to All!

ScottW

Post-Transplant Update: 20 July 2019

As it has been longer than I had intended to write this entry, I have several things to discuss, so let's get right to it!

09 July 16 Labs:

*Creatinine:   2.78 (-0.11)

*Hematocrit:   36.7 (+0.8) IR

*Hemoglobin:   11.6 (+0.1) IR

*Lymphocytes:   10.6 (-2.4) Low

*Lymphocytes Absolute:   0.7 (-0.3) Low

*Neutrophils:   78.8 (+1.0) High

*Neutrophils Absolute:   5.3 (-0.4) IR

*Red Blood Cells:   4.05 (NC) Very Low

*White Blood Cells:   6.7 (-0.7) IR

*Blood Urea Nitrogen:   38 (+3) Very High

*Calcium:   10.0 (+0.2) IR

*Glomerular Filtration Rate:   24 (+1) Extremely Low

*Blood Glucose:   95 (NR 80-100, so this is perfect)

*Potassium:   4.3 (-0.2) IR

*Sodium:   142 (+2) IR

*Protein:   Not Taken

*Magnesium:   2.0 (-0.4) IR

*Phosphorous:   4.3 (+0.7) IR

          NC=No Change     IR=In Range    

The Creatinine actually dropped for the first time in several months, which was a nice surprise. Let's hope for either another reduction in August, or at least no change in the reading.

My Lymphocytes dropped unexpectedly following a few months of stability at the low end of the desired range. Even though my WBC count is good, with the Lymphocytes down, it is time to go back to wearing the mask whenever I am out in enclosed public spaces, and just being extra cautious in general.

Lastly, my Calcium reading was at the very top of the range that my Parathyroid doc was wanting, so I called his nurse for instructions. He said that I am to reduce my calcium supplement (TUMS) intake in half, going from 1,000 mg 4x/day to 1,000 mg 2x/day. Apparently, what little bone hunger remained from the whole parathyroid thing has now disappeared. Next months' lab should show if stability with my calcium has been achieved, or if further CA intake adjustments are needed.

Overall, the labs were good. I had eight lab values in the proper ranges, a good Blood Glucose Level, the drop in Creatinine and steadiness with my electrolytes.   The continued low BUN and GFR are concerning, but unless I hear from my nephrologist or the Transplant Clinic, I'll just keep moving forward.
It was nice to see that my Hematocrit was up to an almost normal level [for a renal transplant patient]. This is a strong indicator that the kidney is managing--despite my low RBC--the proper proportion of Red Blood Cells within the total blood volume in my body. In simplified terms...no anemia.


Also on 09 July, I had my monthly Belatacept infusion; my main anti-rejection med. Aside from a missed cannulation, the infusion went well, and there are once again no side effects...aside from a nice big bruise (contusion) on my arm from that failed stick.


Earlier this week (Tuesday, 16 July) I had my annual wellness exam (as required by my insurance). All was as well as could be expected as my healing and strengthening continues. The doctor (a General practitioner) was pleased with my progress.


As far as other upcoming exams, I have a scheduled visit with a Dermatologist in 
mid-August.  Also, I am still working on the other appointments that I spoke of in my last entry. 


With the heat in my area--as is usual in the summer in a high desert region--I have not gotten out on any walks since my last entry. It is hot outside in the morning, afternoon and evening. However, with doing housework, I am getting exercise in by walking up and downstairs multiple times every day; on the order of 10-15 times. Add in the actual housework, and my strengthening continues its slow--sometimes agonizing--pace. Again, the way I must look at my progress is to concentrate on the small victories...getting 2.5 bathrooms cleaned without exhausting myself; vacuuming the stairs with increasing ease; having enough energy to accomplish multiple things each day, etc. 


My feet have seemed to heal a little more from the dialysis-induced neuropathy. This past week I began to notice different areas of both feet feeling different than the usual burning and extreme numbness. While my toes continue to be so numb that I cannot feel them, my heals and balls of my feet have spots that either have a little feeling emerging, or almost feel slightly normal. The areas that this is happening aren't huge by any stretch; but the fact that I am feeling sensations in varying parts of each foot is very encouraging!

Lastly, I quickly finished that 500 piece puzzle that was next in line. Aside from the initial sorting of the pieces, I took only about 4.5 hours over about a week to complete this puzzle. (The photo is below.)
Since my daughter has yet to purchase that puzzle of the signing of the Declaration of Independence, I do not yet have another one to work on, but am looking.

And that gets me caught up!

I hope that you all enjoy the coming week! Enjoy your summer, and stay hydrated and healthy!

Good Health to All!

ScottW

Post-Transplant Update: 03 July 2019

To start off, do you remember that I started another puzzle in late May after taking months to finish to previous (and extremely difficult) puzzle? Well, I finished the latest puzzle in less than a month. In total, I put in between 12-15 hours of work to complete the project. What is good, is that I am even better able to see the intricate patters of colors, shapes, etc in this 1000 piece, 26" x 26"  puzzle. The whole project took less time than I was anticipating.

The next puzzle will be smaller--just 500 pieces--but is a nearly monochromatic print of the Grand Teton mountains.

Next, more good news on the TMD headache front. Following the previous month of T3 usage (a 30 day Rx that was fully used over 30 days), my late-May to late-June Rx actually lasted a full 31 days! In early June, I had about seven or eight days wherein my headaches were actually minimal, and I was taking just 1 T3 each day, as well as Excedrin the rest of the day. During that time, my average daily usage of T3 fell from 3/day down to 2.35/day! This was excellent! And I can absolutely tell you how nice it was to have my headaches most controlled by regular OTC meds for awhile!
Unfortunately, the TMD decided to rear its ugly head once again, and the headaches and intensity both increased again; just as I said it likely would. During this time, I saw my daily average usage slowly increase to 2.5, then 2.7. At the end of this 31 days of the Rx, my daily average T3 usage was at 2.90. I think that for the first time since the TMD re-emerged (back in 2010), I am finally seeing a reduction in meds (both Rx and OTC) to control the headaches. Finally!

My walks have grown infrequent the past couple of weeks as I have not been sleeping well, and have just been tired most of the time. I don't know why my sleep has been so bad because I am dreaming just fine, am controlling my dreams all the time, and am sleeping between 6-8 hours each night. I am just not resting as well as I should be.

My nightly urinary output continues to vacillate, but I am remaining pretty steady with my weight. I will increase or decrease [my weight] anywhere between 0.0 -0.9 Kg from day to day. So, even thought my nightly output is erratic, my total daily output is consistent.

My abdomen is still sore from the hernia repair; though it is definitely better than it was, and is getting a little better every day. I noticed a few weeks ago that I can actually rest my hands on my upper abdomen without pain...for a time. However, direct pushing contact is still painful, and I still have muscle spasms in both the upper and lower abdomen over the area of the sutures used to stabilize the mesh. These spasms are becoming less frequent. Plus, I have little pain these days from the intercostal muscle cuts; which is great!

The neuropathy in my feet is still healing...very slowly. While I haven't needed to use any ice baths lately, the heat and numbness can get intense. On a good note, I am starting to notice different areas on my feet that are feeling less numb. 

Coming up this month, I have labs and Belatacept infusion next week, my yearly appointment with a cardiologist, a physical exam, and am working on getting appointments with a dermatologist, oncologist and scheduling an overdue colonoscopy. While these all won't be this month, it is time I get these visits done.

With that, I want to wish you all a Happy, Safe and Enjoyable 243rd Independence Day!    I also encourage you to take a few minutes to reflect of those great men who sacrificed so much in order to set us on the road to freedom. They should never be forgotten, never taken for granted, and always acknowledged for what they did for all of us today!

Happy 4th of July!

ScottW