In my last entry I discussed the extreme vertigo that sent me to the ER. Though the cause of the vertigo is unknown--though suspected to be viral, I was hoping that it would soon disappear.
In all, it took between 5-6 days for the vertigo to completely dissipate. Additionally, the fatigue that followed is still dogging me to this day; though it has greatly improved from the sheer exhaustion that I felt at first. So, that's been fun...
Due to the effects from that whole incident, I have accomplished very little since then; which obviously includes updating this blog.
I had wanted to do a thorough catch-up today, but this morning I awoke feeling the onset of a head cold; which leaves my headache pounding, additional tiredness and several tender spots around my head and face. With my immune system low, I am just hoping and praying that my body can ward off getting really sick. We'll see.
My latest Nephrology visit went well. There are no changes to meds, and the doctor wants me to keep healing and strengthening. My next visit is in three months.
I also asked for a prescription for my yearly flu shot.
Normally, your local pharmacy will just administer the shot after you ask for it. However, with a transplant, your pharmacy may require--like mine--a prescription from your doctor that basically OK's the shot, while removing liability from the pharmacy should you have a negative reaction. Always check with your local pharmacy if, as a transplant patient, you need a Rx, too.
In the U,S, this years' flu shot covers not just one or two strains, but four! I don't know the ones it prevents, but if you need it, I'd advise getting your flu shot early in the season, as later times can run into supply issues.
In previous years the flu shots have not bothered me very much. However this year, my heart rate, blood pressure and body temp have all been elevated. I received the shot on Friday evening of 21 Sept. It took until yesterday evening (the following Wednesday) for all three of those vitals to settle down.
As I was typing that last part, it occurred to me that there could be a connection between the flu shot, my lowered immune system and the onset of this head cold. I'm not saying that the shot was the cause; but I can definitely see the likelihood of such a side effect.
I think that I'll end this entry with that thought.
Next week I have my monthly labs and Belatacept infusion. I will update you with those lab results on Tuesday or Wednesday.
May you have a terrific weekend, filled with lots of smiles!
Good Health to All!
ScottW
Thursday, September 26, 2019
Thursday, September 12, 2019
Post-Transplant Update: 12 September 2019
^Reminder: This blog reflects my journey through PCKD, Renal Transplant and subsequent recovery.
How any person reacts to treatments, medications and surgeries is a purely individual thing, and my experiences should never be indicative of how someone else might experience a similar journey. Please, always follow the instructions and advice of the doctors and other medical personnel that you see. Only they can know the best course of treatment for you!
I had an unexpected visit to my local ER (Emergency Room) on Monday due to vertigo-like dizziness.
It started at about 240p as I was sitting at my computer. I turned my head to look out the window and felt dizzy. From that point on it began getting worse.
I ended up calling my wife and asking her to come home and take me to the ER because I could barely walk. She arrived home within about twenty minutes, gathered a few things and drove me to the hospital.
After describing my symptoms I was immediately taken to an exam room and had an EKG done to look at possible cardiac complications; of which there were none.
Then, multiple tubes of blood were drawn for lab work, as well as my giving a urine sample for testing.
I spoke to a doctor within a short time about my S/S's (signs and symptoms). It was a sudden onset; I'd had 82 ounces (about 2.5 liters) of water that day; I felt fine--other than the vertigo all over my body--had not done, eaten or drunk anything unusual; was on all my meds; had eaten a meal and a snack so far; and could think of no reason why vertigo should suddenly happen. Further, I explained that the last time I'd experienced vertigo was when my original kidneys were dying; and definitely not since the transplant.
With my information, the doctor awaited the lab results.
Meanwhile, I was laying on a gurney, still feeling terribly dizzy.
Over the course of the next hour and a half[until the lab results were posted], the vertigo began to subside somewhat. It was still very much there, but at least I was no longer feeling as if I was going to fall over just from turning my head.
When the doctor came back to talk with me, the first thing he said was that the kidney is fine; which was a HUGE relief!
My potassium was a touch high at 5.1, but not abnormal.
WBC's, Creatinine, Calcium and hematocrit are all good.
My lymphocytes dropped from the 03 Sept. reading of 7.9 down to 5.9 (in the danger zone...again).
He surmised that I had picked up something viral, and that the vertigo was how it was manifesting. And with that, I was free to go home.
Since then, the vertigo has retreated to almost nothing, but I have felt exhausted, no matter how much sleep I've gotten.
Now, there may be a few readers who think that I might have over reacted. My response to that is what was drilled into my head by the transplant doctors and all the Clinic literature; which is, that if you are sick, or experience anything highly unusual, get to the nearest hospital... and this sudden onset of vertigo definitely qualifies as "highly unusual."
On another subject, the TMD headaches have been even stronger than last week. Despite wearing my NTI occlusive devices, the headaches just won't decrease, which leaves me hurting constantly with the headache pain averaging about an 8 all of the time. In fact, I took my first heavy duty med (for the headaches) in over a month. Even that only knocked the pain down temporarily. As of last night, my monthly T3 usage is up from 2.7 tablets per day [earlier in the month] to now 3.5 tablets per day; and that is even with me just using Excedrin several times in place of the T3's! It would seem that the TMD is definitely in an extended 'Up' cycle once again, as I had voiced in my last blog entry.
So, that was my fun this week!
Let's hope that things improve over the next few days.
Good Health to All!
ScottW
How any person reacts to treatments, medications and surgeries is a purely individual thing, and my experiences should never be indicative of how someone else might experience a similar journey. Please, always follow the instructions and advice of the doctors and other medical personnel that you see. Only they can know the best course of treatment for you!
I had an unexpected visit to my local ER (Emergency Room) on Monday due to vertigo-like dizziness.
It started at about 240p as I was sitting at my computer. I turned my head to look out the window and felt dizzy. From that point on it began getting worse.
I ended up calling my wife and asking her to come home and take me to the ER because I could barely walk. She arrived home within about twenty minutes, gathered a few things and drove me to the hospital.
After describing my symptoms I was immediately taken to an exam room and had an EKG done to look at possible cardiac complications; of which there were none.
Then, multiple tubes of blood were drawn for lab work, as well as my giving a urine sample for testing.
I spoke to a doctor within a short time about my S/S's (signs and symptoms). It was a sudden onset; I'd had 82 ounces (about 2.5 liters) of water that day; I felt fine--other than the vertigo all over my body--had not done, eaten or drunk anything unusual; was on all my meds; had eaten a meal and a snack so far; and could think of no reason why vertigo should suddenly happen. Further, I explained that the last time I'd experienced vertigo was when my original kidneys were dying; and definitely not since the transplant.
With my information, the doctor awaited the lab results.
Meanwhile, I was laying on a gurney, still feeling terribly dizzy.
Over the course of the next hour and a half[until the lab results were posted], the vertigo began to subside somewhat. It was still very much there, but at least I was no longer feeling as if I was going to fall over just from turning my head.
When the doctor came back to talk with me, the first thing he said was that the kidney is fine; which was a HUGE relief!
My potassium was a touch high at 5.1, but not abnormal.
WBC's, Creatinine, Calcium and hematocrit are all good.
My lymphocytes dropped from the 03 Sept. reading of 7.9 down to 5.9 (in the danger zone...again).
He surmised that I had picked up something viral, and that the vertigo was how it was manifesting. And with that, I was free to go home.
Since then, the vertigo has retreated to almost nothing, but I have felt exhausted, no matter how much sleep I've gotten.
Now, there may be a few readers who think that I might have over reacted. My response to that is what was drilled into my head by the transplant doctors and all the Clinic literature; which is, that if you are sick, or experience anything highly unusual, get to the nearest hospital... and this sudden onset of vertigo definitely qualifies as "highly unusual."
On another subject, the TMD headaches have been even stronger than last week. Despite wearing my NTI occlusive devices, the headaches just won't decrease, which leaves me hurting constantly with the headache pain averaging about an 8 all of the time. In fact, I took my first heavy duty med (for the headaches) in over a month. Even that only knocked the pain down temporarily. As of last night, my monthly T3 usage is up from 2.7 tablets per day [earlier in the month] to now 3.5 tablets per day; and that is even with me just using Excedrin several times in place of the T3's! It would seem that the TMD is definitely in an extended 'Up' cycle once again, as I had voiced in my last blog entry.
So, that was my fun this week!
Let's hope that things improve over the next few days.
Good Health to All!
ScottW
Thursday, September 5, 2019
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)
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!"
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...
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...
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