Yesterday was a busy one.
First, let's take a look at my weights and BP over the past week...
My weight has been fairly steady due to my self-imposed limit on fluid intake of around 2.5 Liters per day. I started the last week at 119.1 Kg, fell down to 118.1 Kg, then rose again to 119.4 yesterday. This morning, I was at 119.1 Kg once again.
Also, urine output has gone hand in hand with my weight loss. On the days I void fluids regularly, I have to pee every two hours, like clockwork. This includes when I sleep. This is also on days that I lose fluid weight.
On the days I gain weight, I am voiding fluid between every 3-5 hours, and only awaken one, maybe two times at night.
Though I had planned to do a 24-hour urine draw, on the day that was to happen, I was feeling lousy, and just didn't get a single output measured.
With the blood pressures, I have been using the Clonidine (BP med) almost every day both day and night. Despite this effort, my A.M. pressures have ranged from 127 (systolic) to 148. Diastolic readings and pulses are acceptable. The P.M. pressures range from 137 (systolic) to 165. The evening diastolics are high and range from 75-100. Pulses are good.
Next, my latest visit with the Kidney Clinic doctors happened just yesterday morning. They listened to my concerns about the recent trends in the BP, Weight and Urine output inconsistency, and they agreed that this exact set of trends led up to the occluded renal artery. So, I am scheduled to do a Renal Ultrasound tomorrow morning. I will give you the results when I get them.
The doctors also agreed that a Renal Angiogram with balloon expansion of the artery is likely. They want to get ahead of a probable growing occlusion before it becomes critical; and I couldn't agree more! No more hospitalizations for a while.
Also during the Clinic visit, my intake of Sodium Bicarb was reduced to 2 tablets (325 mg ea.) twice each day--down from 3 tabs 2x/day. All other meds are staying as established.
The doctors were also pleased overall with my latest labs. Let's look at those...
30 Oct 18 Labs
*Creat: 2.45 (+0.08) Still settling. (The rise could be due to suspected renal artery occlusion)
*HCT: 32.9 (-1.3) Low
*Hemo: 10.1 (-0.3) Acceptable
*Lymph: 2.8 (-5.6) Extremely Low
*Lymph ABS: 0.2 (-0.4) Extremely Low
*Neut: 81.1 (+2.0) Very High
*Neut ABS: 5.2 (-0.1) IR
*RBC: 3.58 (-0.14) Very Low
*WBC: 6.5 (-0.2) IR
*BUN: 43 (+9) Extremely High (Again, possibly due to artery)
*CA: 10.0 (-0.1) IR
*GFR: 29 (-1) Extremely Low
*Gluc: 95
*K+: 4.5 (-0.1) IR
*NA+: 141 (+1) IR
*Prot: 6.8 (-0.3) IR
*MG: 2.3 (-0.3) IR
*Phos: 3.5 (+0.1) IR
*BK: Not Checked
*CMV: Not Checked
NC= No Change IR= In Range
While the Hematocrit, RBC's and Hemoglobin are fairly steady, I am only highlighting the Lymphocytes. Once more, we saw a rise last labs, and another drop this time. The Lymphocytes should start to settle into more of a stable range in the near future. We are already seven months post-rejection episode (of the six to nine month recovery for labs), plus the probable renal artery opening should combine to result in helping this to stabilize soon.
Also, the doctors were absolutely thrilled that I am going on a cruise at the end of the year! They have zero reservations aside from being sure I am as hygienic as possible.
What else...
The headaches continue. I have had to use stronger meds twice this past week in order to knock down the pain for a few hours. The breaks from the intense pain were nice. Aside from those two exceptions, the TMD pain has been constant; day and night. I am somewhat managing to keep the headaches in check with T3 and Excedrin. The caffeine in Excedrin helps to 'potentiate' the T3 so that the pain med works better. I try to stick with 1-T3 and 1-Excedrin at a time as I am limited to 3,000 mg of Tylenol per day (for the health of the kidney). Sometimes, I must use a second T3 to get the pain under control.
Next, I had my latest Belatacept infusion yesterday afternoon. The cannulation was excellent, and the med delivered without a hitch. So far I have had zero appreciable side effects. Hopefully, this stays the same. My next infusion will be on 27 November.
As I go about my daily routine, I try to be a tad more active from day to day. I am doing the stairs in our new place numerous times each day, and I now rarely hold the railing whether going up or down. Plus, my wife and I are walking a circuit of 4/10's of a mile 3-4 times each week. On the uphill I am still using the cane; but on the downhills or flats, I walk without the cane. The longer we do the walks, the stronger I will get, and the cane will soon be unneeded.
I only had one bad day this last week when I just felt off all day. Though I do not know why I felt like this, I took two naps of 1.5-3 hours each, and had a bout of diarrhea. When I awoke the next day, I felt better.
That's all I have for now. IF the results from the ultrasound [tomorrow] come back quickly, I will report that below. If not, I will post them on my next blog.
Until then...
Good Health to All!
ScottW
01 Nov: The Renal Ultrasound went well. Of course, the tech could not say what they saw, so I know nothing. I did, however, call my Transplant Coordinator to inform her that the test was completed. I might know the results tomorrow, or next week.
Wednesday, October 31, 2018
Monday, October 22, 2018
Post-Transplant Update: 21 October 2018
I am late getting this update written simply because I was finishing unpacking from the move, and recovering from a much greater than normal daily activity level.
It has been good for me; doing this move. Though exhausting, the constant activity has helped kick start my body a little, and I am getting through each day with more energy than I have over the past year. This is definitely a good thing!
I forgot to mention in my last post that I had my scheduled Belatacept infusion on October 2nd. Once again, there were very few appreciable side effects.
Unfortunately, both my weight and my BP have been trending upward over the past two weeks. As of this morning, my weight stood at 119.1 KG (up from 117.1 KG four days ago). As far as my blood pressures, the A.M reading has elevated from the mid-110's (Diastolic) to mid-120's, and I am now struggling to have the readings be in the high 120's to low 140's.
The P.M. readings are worse...much worse. Previously these ranged from the 120's (Diastolic) to the low 130's. Now, I am struggling to get readings lower than the high 140's.
Despite these BP readings, my pulses have been fairly consistent; ranging from the low 60's to the mid 70's. Not bad.
Now, I have seen this BP trend before and, not knowing what I was seeing, I ended up in the hospital last Fall for what was assumed to be a rejection. Instead, it was the occluded renal artery. After the artery was opened, the doctors told me that it might need re-opening every once in a while. Last Spring during my full rejection episode, a follow-up renal Angiogram showed a 15% occlusion of the artery. As of now, this recent BP trend is looking exactly like last years' and I am going to cut it off before things become acute.
I have my next Kidney Clinic appointment on the 30th. I will keep a close eye on the BP until then. IF things suddenly spike extremely high, I will call the clinic immediately. If they maintain as they are now, I will wait. In either event, I anticipate a possible Renal Ultrasound as well as a Renal Angiogram with balloon expansion of the renal artery. I will definitely keep you updated on this one!
Now, on to the latest labs...
16 Oct 18 Labs:
*Creat: 2.37 (+0.03) Final average yet to be found.
*HCT: 34.2 (+5.4) Low
*Hemo: 10.4 (+1.4) IR
*Lymph: 8.4 (-6.1) Very Low
*Lymph ABS: 0.6 (+0.2) Very Low
*Neut: 79.1 (+12.4) Extremely High
*Neut ABS: 5.3 (+3.5) IR
*RBC: 3.72 (+0.56) Very Low
*WBC: 6.7 (+3.9) IR
*BUN: 34 (NC) Very High
*CA: 10.1 (+0.5) IR
*GFR: 30 (NC) Extremely Low
*Gluc: 101
*K+: 4.6 (+0.1) IR
*NA+: 140 (NC) IR
*Prot: 7.1 (+0.5) IR
*MG: 2.6 (+0.5) IR
*BK: Not Checked
*CMV: Not Detected
NC= No Change IR= In Range
Once again I am highlighting the Hematocrit, Hemoglobin and Red Blood Cells in a follow-up to the Aranesp shot I had earlier in the month. All these numbers rose as they should have. Though still on the HCT and RBC, the rebound was nice to see; especially considering I received only a single blood booster.
Also, the White Blood Count came back nicely from two weeks ago. It had been in dangerous territory, so rising as it did makes my brain relax a lot.
Lastly, the Lymphocytes did exactly as I anticipated and dropped hugely after yet another significant rise. Seeing that I am now over six months post-rejection, this number should soon begin to settle into a normal range...should. As always, time will tell.
I don't recall if I mentioned this, but my wife and I are scheduled to go on a seven day Western Caribbean cruise in late-December. Because of this, I am trying every day to become more active in order to build as much stamina as I can over the next two+ months. I want to be able to enjoy the cruise as much as possible, and to do that I need strength and the ability to walk more than a couple of hundred yards.
Next, the TMD headaches. Let's see...the best way to put this is probably ever-present, never-ending. I have not had any sort of a break in the headaches at all this month. No matter how much I work on it, he jaw has become so stressed that it just isn't releasing the tension. For the most part I have been able to keep the headaches from exploding into unmanageable territory...keeping them in merely painful. At least I have been able to achieve that much. A small victory on the TMD front is a victory nonetheless.
My next Belatacept infusion is also on the 30th of this month. Assuming the Kidney Clinic does not hold me over for any renal tests, the infusion will proceed as planned. On the other hand, if the clinic orders tests, I actually have a three day window in which to have the infusion. In that case, I will call to reschedule the Belatacept immediately.
In other news, the abdominal numbness I've had since the hernia repair last November has been slowly receding. I am starting to feel tenderness over my lower abdomen for the first time. This is not pain per se, buy just a tenderness to pressure on the skin and irritation from anything rubbing the skin. I will often forget to not lean against something with my lower abdomen, then suddenly realize how tender and slightly painful the area is. So, I try to be conscientious about how I am leaning into things, especially when cooking.
As far as things rubbing on the skin, there really isn't too much I can do other than wear as loose of clothing as I can. At least, that's all I've been able to figure out thus far.
My appetite remains consummate with my activity level, which is very good. My fluid intake is still between 2.5L-3L every day. With my recent weight gain, I am trying to keep that intake closer to 2.5L since I am obviously not voiding everything I drink. I am planning to do a 24-hour urine draw to determine the disparity between my fluid intake and output. I will try to remember to note that in my next blog.
And that is all I have for now.
I will let you know how things go regarding my BP and weight rise.
Until then, enjoy every day and keep looking towards a bright tomorrow!
Good Health to All!
ScottW
It has been good for me; doing this move. Though exhausting, the constant activity has helped kick start my body a little, and I am getting through each day with more energy than I have over the past year. This is definitely a good thing!
I forgot to mention in my last post that I had my scheduled Belatacept infusion on October 2nd. Once again, there were very few appreciable side effects.
Unfortunately, both my weight and my BP have been trending upward over the past two weeks. As of this morning, my weight stood at 119.1 KG (up from 117.1 KG four days ago). As far as my blood pressures, the A.M reading has elevated from the mid-110's (Diastolic) to mid-120's, and I am now struggling to have the readings be in the high 120's to low 140's.
The P.M. readings are worse...much worse. Previously these ranged from the 120's (Diastolic) to the low 130's. Now, I am struggling to get readings lower than the high 140's.
Despite these BP readings, my pulses have been fairly consistent; ranging from the low 60's to the mid 70's. Not bad.
Now, I have seen this BP trend before and, not knowing what I was seeing, I ended up in the hospital last Fall for what was assumed to be a rejection. Instead, it was the occluded renal artery. After the artery was opened, the doctors told me that it might need re-opening every once in a while. Last Spring during my full rejection episode, a follow-up renal Angiogram showed a 15% occlusion of the artery. As of now, this recent BP trend is looking exactly like last years' and I am going to cut it off before things become acute.
I have my next Kidney Clinic appointment on the 30th. I will keep a close eye on the BP until then. IF things suddenly spike extremely high, I will call the clinic immediately. If they maintain as they are now, I will wait. In either event, I anticipate a possible Renal Ultrasound as well as a Renal Angiogram with balloon expansion of the renal artery. I will definitely keep you updated on this one!
Now, on to the latest labs...
16 Oct 18 Labs:
*Creat: 2.37 (+0.03) Final average yet to be found.
*HCT: 34.2 (+5.4) Low
*Hemo: 10.4 (+1.4) IR
*Lymph: 8.4 (-6.1) Very Low
*Lymph ABS: 0.6 (+0.2) Very Low
*Neut: 79.1 (+12.4) Extremely High
*Neut ABS: 5.3 (+3.5) IR
*RBC: 3.72 (+0.56) Very Low
*WBC: 6.7 (+3.9) IR
*BUN: 34 (NC) Very High
*CA: 10.1 (+0.5) IR
*GFR: 30 (NC) Extremely Low
*Gluc: 101
*K+: 4.6 (+0.1) IR
*NA+: 140 (NC) IR
*Prot: 7.1 (+0.5) IR
*MG: 2.6 (+0.5) IR
*BK: Not Checked
*CMV: Not Detected
NC= No Change IR= In Range
Once again I am highlighting the Hematocrit, Hemoglobin and Red Blood Cells in a follow-up to the Aranesp shot I had earlier in the month. All these numbers rose as they should have. Though still on the HCT and RBC, the rebound was nice to see; especially considering I received only a single blood booster.
Also, the White Blood Count came back nicely from two weeks ago. It had been in dangerous territory, so rising as it did makes my brain relax a lot.
Lastly, the Lymphocytes did exactly as I anticipated and dropped hugely after yet another significant rise. Seeing that I am now over six months post-rejection, this number should soon begin to settle into a normal range...should. As always, time will tell.
I don't recall if I mentioned this, but my wife and I are scheduled to go on a seven day Western Caribbean cruise in late-December. Because of this, I am trying every day to become more active in order to build as much stamina as I can over the next two+ months. I want to be able to enjoy the cruise as much as possible, and to do that I need strength and the ability to walk more than a couple of hundred yards.
Next, the TMD headaches. Let's see...the best way to put this is probably ever-present, never-ending. I have not had any sort of a break in the headaches at all this month. No matter how much I work on it, he jaw has become so stressed that it just isn't releasing the tension. For the most part I have been able to keep the headaches from exploding into unmanageable territory...keeping them in merely painful. At least I have been able to achieve that much. A small victory on the TMD front is a victory nonetheless.
My next Belatacept infusion is also on the 30th of this month. Assuming the Kidney Clinic does not hold me over for any renal tests, the infusion will proceed as planned. On the other hand, if the clinic orders tests, I actually have a three day window in which to have the infusion. In that case, I will call to reschedule the Belatacept immediately.
In other news, the abdominal numbness I've had since the hernia repair last November has been slowly receding. I am starting to feel tenderness over my lower abdomen for the first time. This is not pain per se, buy just a tenderness to pressure on the skin and irritation from anything rubbing the skin. I will often forget to not lean against something with my lower abdomen, then suddenly realize how tender and slightly painful the area is. So, I try to be conscientious about how I am leaning into things, especially when cooking.
As far as things rubbing on the skin, there really isn't too much I can do other than wear as loose of clothing as I can. At least, that's all I've been able to figure out thus far.
My appetite remains consummate with my activity level, which is very good. My fluid intake is still between 2.5L-3L every day. With my recent weight gain, I am trying to keep that intake closer to 2.5L since I am obviously not voiding everything I drink. I am planning to do a 24-hour urine draw to determine the disparity between my fluid intake and output. I will try to remember to note that in my next blog.
And that is all I have for now.
I will let you know how things go regarding my BP and weight rise.
Until then, enjoy every day and keep looking towards a bright tomorrow!
Good Health to All!
ScottW
Wednesday, October 10, 2018
Post-Transplant Update: 09 October 2018
Even though we moved in on the 29th of September, I have only just now gotten my office put back together enough to write a new entry. Thanks for hanging in there until I was able to type this up!
As expected, our move was exhausting! I have no idea where what little energy I was able to summon came from, but it is done. Plus, I have slowly unpacked the past week plus, and most things have been put away.
First off, let's go over my labs that were drawn last week:
02 Oct 18 Labs:
*Creat: 2.32 (-0.05) Dropping
*Hct: 28.8 (-2.7) Very Low...again
*Hemo: 9.0 (-1.1) Very Low...again
*Lymph: 14.5 (+11.5) Low
*Lymph ABS: 0.4 (+0.2) Very Low
*Neut: 66.7 (-15.6) High
*Neut ABS: 1.8 (-2.8) IR
*RBC: 3.16 (-0.34) Very Low...again
*WBC: 2.8 (-2.6) Extremely Low
*BUN: 34 (-1) Very High
*CA: 9.6 (-0.4) IR
*GFR: 30 (NC) Extremely Low
*Gluc: 111
*K+: 4.5 (+0.2) IR
*NA+: 140 (NC) IR
*Prot: 6.6 (-0.4) IR
*MG: 2.1 (-0.2) IR
*Phos: 2.5 (-0.4) IR
*BK: Not Detected
*CMV: Not Detected
NC= No Change IR= In Range
The most troubling information in the labs was the drops in hematocrit, hemoglobin and red blood cells. This of course means that once again, my kidney is not telling my bone marrow to produce RBC's and hemoglobin. On learning this, I immediately called my coordinator to relay the news. She returned my call after speaking with the clinic doctors. They ordered another shot of Aranesp, which I did on Thursday of last week. Hopefully, the Aranesp will do its job and kick start the RBC productions once more. As I am NOT doing labs this week, I will find out next week the result of the shot.
Also, my Lymphocytes took an 11.5 jump. As before with these huge jumps, I am not expecting it to stay at this level.
With all the stress and exertion involved in moving a household, my headaches have been terrible; as you might expect. There has been LOTS of TMD involvement, and my jaw is clunking really hard! Despite my efforts, the headaches have not reduced. As I am done with the major unpacking, I should be able to better focus on reducing the TMD symptoms, and possibly the headaches.
My body is still trying to recover from the past month, so I am pretty tired most of the time. On top of this, the low hematocrit certainly doesn't help. Hopefully, the Aranesp will do its job and return all three labs back to acceptable ranges.
That's all I have at this time. I will get another entry done after my labs next Tuesday.
Until then,
Good Health to All!
ScottW
As expected, our move was exhausting! I have no idea where what little energy I was able to summon came from, but it is done. Plus, I have slowly unpacked the past week plus, and most things have been put away.
First off, let's go over my labs that were drawn last week:
02 Oct 18 Labs:
*Creat: 2.32 (-0.05) Dropping
*Hct: 28.8 (-2.7) Very Low...again
*Hemo: 9.0 (-1.1) Very Low...again
*Lymph: 14.5 (+11.5) Low
*Lymph ABS: 0.4 (+0.2) Very Low
*Neut: 66.7 (-15.6) High
*Neut ABS: 1.8 (-2.8) IR
*RBC: 3.16 (-0.34) Very Low...again
*WBC: 2.8 (-2.6) Extremely Low
*BUN: 34 (-1) Very High
*CA: 9.6 (-0.4) IR
*GFR: 30 (NC) Extremely Low
*Gluc: 111
*K+: 4.5 (+0.2) IR
*NA+: 140 (NC) IR
*Prot: 6.6 (-0.4) IR
*MG: 2.1 (-0.2) IR
*Phos: 2.5 (-0.4) IR
*BK: Not Detected
*CMV: Not Detected
NC= No Change IR= In Range
The most troubling information in the labs was the drops in hematocrit, hemoglobin and red blood cells. This of course means that once again, my kidney is not telling my bone marrow to produce RBC's and hemoglobin. On learning this, I immediately called my coordinator to relay the news. She returned my call after speaking with the clinic doctors. They ordered another shot of Aranesp, which I did on Thursday of last week. Hopefully, the Aranesp will do its job and kick start the RBC productions once more. As I am NOT doing labs this week, I will find out next week the result of the shot.
Also, my Lymphocytes took an 11.5 jump. As before with these huge jumps, I am not expecting it to stay at this level.
With all the stress and exertion involved in moving a household, my headaches have been terrible; as you might expect. There has been LOTS of TMD involvement, and my jaw is clunking really hard! Despite my efforts, the headaches have not reduced. As I am done with the major unpacking, I should be able to better focus on reducing the TMD symptoms, and possibly the headaches.
My body is still trying to recover from the past month, so I am pretty tired most of the time. On top of this, the low hematocrit certainly doesn't help. Hopefully, the Aranesp will do its job and return all three labs back to acceptable ranges.
That's all I have at this time. I will get another entry done after my labs next Tuesday.
Until then,
Good Health to All!
ScottW
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