Thursday, September 9, 2021

Post-Transplant Rejection Update: 09 September 2021

 I know it has been a few weeks since my last post, so let's get started right away...


Day to day, things have been OK, I guess. 

The headaches remain consistent, with one bad TMD-induced headache that was a solid 10 for two days. Getting it to calm down took my best meds, minimal eating (to minimize stress on the jaw from chewing) and LOTS of doing pretty much nothing at all. 

The workouts have been regular, going every Monday, Thursday and Saturday. The lone exception to that was during the just-mentioned TMD headache.

My weight has started settling back down. It took over a month, but I am now finally bouncing back around in the high 115 Kgs. Again, that weight gain was nothing that I had or had not done. It simply happened.

Sleep-wise, with my exercise being regular again, I am sleeping better most nights. In the past three weeks I have had just one night that was interrupted by not getting back to sleep after having emptied my bladder.

My appetite has been getting better as my workouts have remained consistent. I am actually getting hungry several mornings each week, and almost always sate that with a big bowl of ZOOM (hot cereal), two slices of toast and some milk. My lunches are still inconsistent as far as total volume, but my dinners are almost always filling. 

I am still having Covid Vaccine side effects. It is now going on three months post vaccination. I am getting hot--which lasts up to two hours--getting minor dizziness, minor fuzziness to my vision, and occasional lethargy. These side effects are always one or two a day, and are never at the same times.   These can stop at any time!

Overall, I've been feeling up and down. No two days are alike right now. I never know how the day will go as I can wake up feeling good, only to start feeling lousy a few hours late; or I completely run out of energy well before I normally would.    You get the point.  So, I just take the days as they come. This means that I sometimes have to push myself mentally and physically  to start my workouts, as well as get them finished at the proper weights and total repetitions.


My latest infusion of Belatacept was on 03 September. 


I had the next lab draw just yesterday. Here are the results...


07 Sept 21 Labs:

*Creat:   3.53

*HCT:   34.9 (+0.4) Low

*Hemo:   11.2 (+0.2) Just High

*RBC:   3.92 (+0.04) Extremely Low

*WBC:   6.8 (-0.1) IR

*BUN:   45 (+1) Extremely High

*CA:   9.8 (+0.5) IR

*GFR:   18 (-2) Extremely Low

*Gluc:   110

*K+:   3.9 (+0.4) IR

*NA+:   139+ (-1) IR

*Phos:   4.2 (+0.6) IR

*PSA:   4.7 

*PTH:   62

             NC= No Change        IR= In Range          

The labs are "stable," which just means that despite the variations, nothing looks alarming.

I highlighted the last two additional values because they were ordered by the Transplant Team following my tele-med visit in August.

The Prostate Specific Antigen (PSA) is normally between 0.1-3.0. However, as a transplant patient, the variations I have seen in past tests have been huge; and this result is actually lower than the last few results. I was previously told that my higher PSA is of no cause for concern, so until I hear otherwise, I will continue with that line of thinking.

The second additional value is the Parathyroid Hormone. This too swings wildly between 55-110, with the preferred top of the range being 99.


I had my latest visit with my Nephrologist this past Tuesday. He saw nothing of concern in my labs, and has not changed my meds. Unless I have something happen, my next appointment will be in three months.


So, there you have all of the latest.

Upcoming, I have my yearly follow-up with my Dermatologist on Tuesday, 14 Sept. Also, I have a referral for my needed Colonoscopy that I will be calling on tomorrow. After that, I have only to get my Dental Clearance in order to be "Active" on the Transplant List.

As I get those done, I will keep you updated.

Enjoy the impending turn to Fall, and the cooler, wetter weather and leaves turning color that it brings.

Good Health to All!

ScottW

Saturday, August 14, 2021

Post-Transplant Rejection Update: 14 August 2021

 This entry is delayed because the Echocardiogram left me feeling like garbage for three days! Unlike what I had thought, this test was not the P.E.T. test, but a simple scan of the heart. 

Unfortunately, this test, done by ultrasound, involves a lot of deep pressing on the mid upper, and left upper abdomen in order to get as many angles of the heart as can be done. Doing this aggravated a LOT of scar tissue in my upper abdomen leaving me really sore and extremely nauseated. Only this morning am I feeling appreciably better.

Following is the bulk of the test results from the Echocardiogram taken on 10 August 2021:


"Adult Echocardiogram Procedure 

 The images were of fair technical quality. Imaging quality was affected by prominent lung artifact. Complete echo, cardiac Doppler and color flow imaging was performed. Resting EKG showed normal sinus rhythm at a rate of 73 beats per minute. 

 M-Mode/2D Measurements and Calculations IVSd: 0.9 cm LVIDd: 5.9 cm AOd: 4.3 cm EF: 60 % +/- 3% LVPWd: 1.0 cm LVIDs: 3.6 cm Asc Ao 3.80cm FS: 39.5 % RVd LAX cm RVd AP4 cm LAs: 4.60 IVC: LV SV: 106.8 ml LV EDV: 176.7 ml LV ESV: 69.9 RV area cm2 LV EDV BP i 73.27 LV ESV BP i 28.98 LV Mass i g/m2 RWT 0.35 LA Vol (MOD) index: 30.82 ml/m² Doppler Measurements AV MV TV LVOT: 2.40 cm E Vel: 0.79 m/s RA press: 3 mmHg LVOT Vel: 1.32 m/s A Vel: 1.11 m/s AoV Vel: 1.6 m/s E/A: 0.7 RV PV Mean Grad: 6 mmHg PHT: 54 msec RVOT VTI: 0 m Pk Vel: 1.26 m/s Pk Grad: 10 mmHg MVA: 4.1 cm2 Pk Grad: 6 mmHg AoV area: 4.0 cm2 Mean Grad: 2 mmHg PV AT: 70 msec LVOT SV: 127.6 ml Decel Time: 187 msec LVOT SVi 52.9 ml/m2 e' Medial: 6.64 cm/s e' Lateral: 5.77 cm/s E/e' Avg: 12.73 

 Left Ventricle  The left ventricular chamber size is mildly increased. There is normal left ventricular wall thickness. Left ventricular systolic function is normal. There are no segmental wall motion abnormalities. Left ventricular ejection fraction is estimated to be 60 %(+/_ 3%). The relative wall thickness is normal. LV basal fractional shortening is normal, as measured by 2D. Normal diastolic pattern with normal left atrial pressure. 

 Right Ventricle Normal right ventricular size and systolic function. Tricuspid annular plane systolic excursion (TAPSE) measures 3.3. Left Atrium Left atrial volume index is 30.82 ml/m² which is normal in size. The interatrial septum appears normal by 2D and color Doppler imaging. Right Atrium The right atrial size is normal. The right atrial area is 17.1 cm2. The right atrial volume is normal at 15.96 ml/m² indexed by BSA. 

 Aortic Valve The aortic valve is tricuspid. Peak transaortic velocity (Vmax) is 1.6 m/s. Peak transaortic gradient is 10 mmHg. Mean transaortic gradient is 6 mmHg. LVOT diameter is 2.40 cm. Calculated aortic valve area and area index by continuity equation is 4.0 cm² and 1.7 cm²/m². Doppler velocity index (DVI) is 0.85. Trace aortic valve regurgitation. 

 Mitral Valve Mitral valve is normal in structure, thickness and function. Calculated valve area by pressure half time is 4.1 cm². Mitral valve pressure half time is 54 msec. Mean transmitral gradient is 2 mmHg. Trace mitral valve regurgitation. 

Tricuspid Valve Tricuspid valve is normal in structure, thickness, and function. No tricuspid regurgitation is present. 

 Pulmonic Valve Pulmonic valve is normal in structure, thickness, and function. No indication of pulmonary valve regurgitation. Aorta The aortic root size is mildly dilated, measuring 4.30 cm. The ascending aorta is 3.80 cm, indexed to BSA is 1.58 cm/m² which is normal. 

 Venous The inferior vena cava was normal in this study. 

 Impression: 

 1. Left ventricular systolic function is normal. The LVEF is 60 %(+- 3%). 

 2. There are no segmental wall motion abnormalities. 

 3. Normal diastolic pattern with normal left atrial pressure. 

 4. The left ventricular chamber size is mildly increased." 

 5. Normal right ventricular size and systolic function. 

 6. The left atrium is normal in size. 

 7. The right atrial size is normal. 

 8. Mildly dilated aortic root. 

 9. Compared to previous echo of 6/3/2020, no significant change."


As a summation, aside from slight enlargement of my L Ventricle, my heart is just fine. 

Now, my August lab results...

03 Aug 21 Labs:

*Creat:   3.22 (-0.04)

*HCT:   34.5 (-1.2) Low

*Hemo:   11.0 (-0.2) IR

*RBC:   3.88 (-0.09) Extremely Low

*WBC:   6.9 (+0.2) IR

*BUN:   44 (+1) Extremely High

*CA:   9.3 (-0.6) IR

*GFR:   20 (NC) IR

*Gluc:   101

*K+:   3.5 (-0.5) IR

*NA+:   140 (-1) IR

*Phos:   3.6 (-0.1) IR

          NC= No Change       IR= In Range


All in all, my labs appear to be steady right now. There is nothing of concern from any of the latest results.

As I had hoped, after returning from vacation, with my Red Cell count up, I finally have the energy to workout once again. I started up again on Saturday, 31 July by using light weights and fewer reps. I referred to it as an "OK, body, it's time to wake up and get going again" workout. I allowed a two day rest before the next session during which I kept the weights light, but increased the reps a bit. Since then, I have exercised every Monday, Thursday and Saturday since--except for this past Thursday [due to my feeling lousy from the Echo.] My next workout is today, and I will be using all of my previous weights (before stopping due to a complete lack of energy from a decreased RBC count), and reps. 

My body has responded well, and I am certainly well ahead of my expected progress following three months of no exercise. 


That's all for today. The things I wanted most to cover have been discussed. 


Stay safe, and keep enjoying your summer and getting back to your lives.


Good Health to All!

ScottW





Monday, August 9, 2021

Post-Transplant Rejection Update: 09 August 2021

 Aside from a cold that began developing shortly before leaving for vacation, my time away was really nice!

I had the opportunity to drive up to Mesa Verse NP, and while there, got completely drenched from a massive thunderstorm that rolled across the mesa that afternoon. No matter, because it was wonderful being there, seeing the ruins and just enjoying the vistas, the rain and the area!

Here are a few pics I got with my phone that day:



A great view across a valley atop Mesa Verde NP (July 2021 SW)


A view to Cliff Palace, Mesa Verde NP (July 2021 SW)


Ruins and approaching thunderstorm atop Mesa Verde NP (July 2021 SW)


View to the North from atop Mesa Verde NP (July 2021 SW)



Though too brief (as vacations always are), I was glad to get away, and to be able to drive on the open road; which I always love to do! 

On 03 August I had both my monthly labs, as well as my latest infusion of Belatacept. I won't list the labs today, because I will be doing another entry in a few days; so I'll pass those results on then. Suffice it to say, the kidney seems to be stable.  
My infusion went well, with a single stick canulation, and the usual zero side effects. My next infusion is actually on 31 August.

Tomorrow, I have the Echocardiogram (P.E.T. test) that the Transplant Clinic ordered; which is why I will be doing another entry this week.

So for today, that's all I have.

I hope you are all doing well and getting back to a normal life.

Good Health To All!
ScottW



Tuesday, July 20, 2021

Post-Transplant Rejection Update: 20 July 2021

 Just a brief update today, as preparations are in high gear for our upcoming vacation.


The side effects from the vaccine continue five weeks after the inoculation of the 2nd vaccine. Every day I see the pointed headache, dizziness, lethargy, feel hot, or the fuzzy eyesight. Last week I had extreme dizziness that lasted two days, combined with being hot one day, and the headache on the next day. This is NOT fun, and can stop any time!

On the good news front, my taking the iron pills is finally starting to give me more energy. I was hoping to start working out again before the trip; but with the ongoing side effects, that just hasn't happened. So, I am planning on getting started again after I get back.

The normal TMD headaches continue, but remain under control with the chiropractic, acupuncture and meds. 

My sleep continues to be sporadic. I know that working out will help me sleep better, so hopefully, I will start seeing that very soon.


Also, because of these lingering vaccine side effects, I have not felt up to getting any needed appointments done for going active on the Transplant List. There are only a few things to get done, which I had planned on accomplishing in June and July; before I knew how bad the virus vaccine would hit me.

Anyhow, that's all I have for today.

I will return on the 28th, and will hopefully get an update done shortly afterwards.

Until then, stay safe, enjoy your summer and keep doing and being your very best!


Good Health to All!

ScottW

Sunday, July 11, 2021

Post-Transplant rejection Update: 11 July 2021

 Going on a month since my second Wuhan Virus shot, and I am STILL having side effects!


Let's get started though, with my latest lab results...


06 July 21 Labs:

*Creat:   3.26 (+0.27)

*HCT:   35.7 (+0.5) Low

*Hemo:   11.2 (NC) IR

*Lymph:   Not taken

*Lymph ABS:   Not Taken

*RBC:   3.97 (+0.02) Extremely Low

*WBC:   6.7 (+0.9) IR

*BUN:   43 (-4) Extremely High

*CA:   9.9 (+0.7) IR

*GFR:   20 (-2) Extremely Low

*Gluc:   111

*K+:   4.0 (+0.2) IR

*NA+:   141 (+4) IR

*Phos:   3.7 (NC) IR

*Parathyroid Hormone (PTH):   91

              NC= No Change       IR= In Range


Stability. That's about all my labs show this month. 


Also, I had my July Infusion the same day as my lab draw. Because my L arm is NOT getting poked numerous times every month, the arm is healing and the IV sticks are becoming easier for the nurses at the Infusion Center. Once again, the IV was placed with just a single stick.


Now, as far as the virus inoculation...

Though I am no longer having widespread side effects, every day brings at least one or two that just won't go away. One day it will be the unique headache; the next it will be dizziness; the next it will be exhaustion and dizziness...

You get the point. 

The side effects ARE getting better; it is just agonizingly slow getting rid of them!

Again, I knew this was a possibility; but that doesn't help my frustration with whatever pops up on any given day.


Aside from those lingering side effects, things are Okay, I guess. I still haven't had the energy to work out. It's now over two months since I last exercised, and my weight is rising as a result.

I had been flirting with 113 Kgs; but now sit squarely in the 115s, with an occasional dip to the 114's, and a few rises into the 116 Kgs, which I hadn't seen since this past February. While I realize that this is due to the kidney struggling, it is still frustrating nonetheless. I am so close to the goal that the Transplant surgeon set of 111 Kgs!


My sleep has been, well, terrible. Many times after getting up to empty my bladder I struggle to fall back asleep. I'll lay in bed for an hour or two before giving up; so I get dressed and do computer work until I get sleepy again. This happened just a few hours ago when I awoke at 2:57A. I finally got up at 5:15A. I will undoubtedly take a nap later this morning to compensate for at least a couple of hours of missed sleep.   Other nights I'll get a full night of sleep, even after getting up several times. 

The iron supplements have stabilized my Iron levels, and helped increase my Red Blood Cells and Hematocrit. However, my Ferretin and Transferrin numbers remain low. Getting those numbers up may just take time. I don't know, to be honest.


The TMD headaches kicked in full force once the vaccine headaches has diminished from constant to occasional. And with my rehab doctor taking time off, plus some interference from holidays and other appointments, my Chiropractic and acupuncture treatment have been intermittent, at best. Plus, with the pandemic waning, and both my wife and I being inoculated, we are finally getting out of town in a week and a half; so I'll miss even more treatments. But, after a year and a half of constant vigilance against the pandemic, and being essentially cooped up for most of that time, getting away from home for a week will be wonderful!

Everything else is pretty much status quo. There have been no big changes either positive or negative. Even though I'd love to be working out regularly, I'll still take status quo over heading towards--or being on--dialysis any day!


Because of preparations for my upcoming trip away, I do not know if I'll get another entry done before I leave on the 22nd [of July]. So, if you don't hear from me before then, I will likely get one either by the end of the month, or in early August.

Until then, I wish all of you a safe, cool and fun summer!


Good Health to All!

ScottW

Thursday, June 24, 2021

Post-Transplant Rejection Update: 24 June 2021

 My second Wuhan Virus vaccination shot was on Tuesday, 15 June.

As of today, I still have lingering side effects.


By the evening of the 15th, I was starting to feel off, and the same non-TMD headache began.

Over the ensuing days, I had a poor appetite, felt hot, dizziness, lethargy, body aches, and I slept a lot more than normal. By day 5 I had thought than many symptoms had disappeared; but instead of being there when I awoke on Sunday, they hit me after I was up for about two hours.

This same pattern has repeated every day since.


As of this morning--10 days later--I am still hot, getting dizzy, have the headache, and continue to feel off. So...yeah...lots of fun...

I knew this would hit me hard; it just did so in an unexpected way. Instead of nailing me like the first shot, the side effects on this one have been less in intensity, but they are just going, and going, and going. 

Honestly, I have no idea how much longer I'll be feeling like this. 


As a result, and until I actually feel better, this will be my last entry. So, it could be a few more days, or another week before I get back to typing up an update.


I hope you are all well, happy and healthy!

ScottW

Wednesday, June 9, 2021

Post-Transplant Rejection Update: 09 June 2021

 Those Wuhan Vaccination side effects lasted a solid seven days!


The headache persisted until  the following Sunday, the fever until Monday, and the lethargy lasted until Tuesday.  So much fun!   The second shot will be on 15 June. 

I have so much to look forward to!  :o(


Next up, my June lab results.


01 June 21 Labs:


*Creat:   2.99 (-0.34)

*HCT:   35.2 (+0.5) Low

*Hemo:   11.2 (+0.3) IR

*Lymph:   Not Taken

*Lymph ABS:   Not Taken

*RBC:   3.95 (+0.07) Extremely Low

*WBC:   5.8 (-1.6) IR

*BUN:   47 (+3) Extremely High

*CA:   9.2 (NC) IR

*GFR: 22 (+3) Extremely Low

*Gluc:   109

*K+:   3.8 (NC) IR

*NA+:   137 (-2) IR

*MG:   Not taken

*Phos:   3.7 (+0.2) IR

               NC= No Change     IR= In Range


There was a nice drop in the Creatinine, along with corresponding movement in the GFR and the BUN. Unfortunately, both of those latter numbers are significantly out of their proper ranges. 

*Remember, when a kidney (or kidneys) is/are going down, you will see vacillations of all of those key lab values. Next month, all three could very well be worse; while in two months, we could see all three rebound again. It is just the nature of a failing kidney.

The RBC's took another nice bump, which I am surprised to see. It will be interesting to see if the Creatinine, GFR and BUN results from month to month show any corresponding movements in the Red Blood Cell production. I will try to remember to note that, but no promises as my brain has started becoming a little foggier again. 


I saw my Nephrologist on 01 June. He is pleased, overall, with my "progress." We are both frustrated with my energy level, so he ordered that I start taking OTC oral Iron tablets to see if a boost in my RBC's might add some better oxygenation to my body, and therefore, more energy. He did caution me that this might not work simply because of the kidney going down. It's worth a shot, though.


I had my June Infusion of Belatacept just yesterday. The nurse got the stick on the first try! (Thank goodness!) My next infusion will be on 06 July.


As far as other things...


The acupuncture is going well. My TMD remains in relative check; which isn't saying a lot, but again, at least the headaches aren't out of control like they were when my original kidneys were dying. So, I'll absolutely take "relative control!"  My feet have been experiencing many nerves waking up with dozens of pinprick sensations on all of the toes, on top of both feet, and some on the bottoms of the feet. There is still a ways to go, but with my feet starting to swell again, any progress against the neuropathy is excellent!

The TMD headaches have had a change in the pattern, going from all of the time to [usually] starting up in the evenings. This is likely due to a simple buildup of jaw tension throughout the day. By the next morning, it is usually calmed down. I have experienced this now for over a month, which is how I know the pattern has changed. I really don't mind the change because it gives me a number of hours every day that are mostly headache free.


Because of my energy, I have not worked out in a month now. Again, what energy I have is quickly used up getting my wife ready for work, going to appointments, and getting some errands a/o shopping done. This all happens by about noon. After that I am totally spent. IF the Iron supplements help at all, I should see an increase in my energy within about a week. We'll see...


My appetite has started shifting again. Foods that I have been fine with are becoming unappetizing once again. Some days I have almost no lunch, but a decent dinner, and visa-versa. Every so often I'll have a decent lunch AND dinner; though these are markedly happening less.  IF I can start working out again, this will definitely help my overall food intake.


Sleeping has been OK, at best. My dreams remain under my control, but the past few weeks, my ability to get back to sleep after emptying my bladder throughout the night has taken a step backward. Some nights I get up to six hours of quality sleep, but most nights that is more around 4.5-5.0 hours. Yes, this doesn't help my overall energy level; but even after taking 1-2 hour naps during the day, I still have no energy.


As far as my weight, without regular exercise, I am still hovering between 114.0 Kgs and 115.5 Kgs. Right now, my day to day weight-loss is a constant yo-yo. This isn't ideal by any stretch; but at least I am not gaining a lot more weight.


Next week (Tuesday) is my second Wuhan Virus vaccination. 

After talking with a number of people regarding the difference between their first and second vaccinations [with the Pfizer formulation], there is no clear consensus as to how the second vaccine might affect me. Some people had no S/S's (Signs and Symptoms) on the First, but got hit on the Second.  Some had severe S/S's on the First, but relatively none on the Second dose. And a couple of people had S/S's on both doses. Some had no immune responses to either. No one I spoke to though had a compromised immune system like I do; so, anything can happen is basically the approach I am taking.


And that is all I have today.

I hope that all of you are safe, healthy and getting back to life.


Good Health to All!

ScottW