Stable is good right?

Today Jim had an appointment downtown at the transplant clinic to check up on his white blood cell count and the status of his CMV. This is the second lab draw with a negative CMV status which is good however slightly confusing because I was under the impression that once someone is CMV + that they are always CMV+, but it is a matter of the amount. But I will take the -CMV and just be happy in my ignorance. His white blood cell count remains low however stable so the doctors do not seem terribly concerned. He is now showing a 3.6 WBC where normal is 4.0-11.0. On another front Jim's red blood cell count is the highest I have ever seen. Creatinine and pancreatic enzymes are also stable, as well as his glucose.

He has an appointment for another lab draw in two weeks with phone follow up, and pending results his next in clinic appointment is in 4 weeks.

Prayer Requests: labs remain stable, white blood cell count continues to rise, thanks for stable results today

Bible Verse: : "Give thanks for the Lord for He is good and His mercy endures forever. " Psalms 107:1

CM...what?

Jim has been diagnosed with CMV, also known as cytomegalovirus. It is a virus that most of us with a typical immune system fight off everyday but since he pretty much doesn't have one of those he couldn't. We are unsure of where he picked this virus up since you can get it just about anywhere but I tried to pin point it and have called my doctor and our vet thinking that maybe the cat is the culprit but she's not. Of course Jim tells me to relax but I am just not that great at relaxing. Since he was found to be positive for the virus he is going back on another medicine. He will have to take this medication for at least 3 months. We are trying oral meds first and if his white blood cell count doesn't bounce back then he will be admitted for IV medications for a couple of days. Luckily eventhough he has this virus he doesn't feel too bad. He began running a low grade fever yesterday but minimal other symptoms. If we hadn't run his labs we probably would have just thought he had a cold. Luckily we are still doing check ups so they caught it early enough to not do any damage to his new organs. (at least that is what I am telling myself)

His creatinine on Tuesday was 1.7 so that is within his norm. He likes to bounce between 1.5-1.8. His pancreatic enzymes are holding strong and behaving really well so that is a blessing.

Other than that no other big news for Jim- I think that quiet is nice!! Hopefully it will calm down even more now with the new medication.

Prayer Requests: Medication works and fights the virus with white blood cell count bouncing back, stable pancreatic and kidney numbers continue, happy pumping for our dear little friend Parker A.

Bible Verse: So Jim felt camaraderie with the story of David and Goliath today so I thought that I would share a verse. David (Jim) and his personal battle with Goliath (CMV).

"So David triumphed over the Philistine with a sling and stone; without a sword in his hand he struck down the Philistine." I Samuel 17:50 ...We can do all through Christ who strengthens us.

It's Been Awhile

So first off I would like to apologize for not keeping everyone up to speed lately. It has been so fun starting to get a glimpse of what normal life is like that I ran a little off track.

Let's start with the good news: 1- Jim started a new job- he is working as a tech at a local therapy clinic. It is an outpatient facility working with adults so the germ exposure is a little smaller (so this makes me happy) 2- Jim also received his acceptance letter into COTA school!! YAY!! What does this mean? It means that Jim will begin school to become an OT assistant in August. He is beginning to chase his dreams that have been on hold for so long.

Now for a little loop- knowing our journey you knew this was coming. We had a follow up appointment on Monday and things did not go as planned. He had his second glofil test and the results were the exact opposite of the first time. His results this time were in the 40's. This test is the most accurate way to test kidney function. Unfortunately a number in the 40's is not the number we would like. This in itself is not something to raise a red flag however his creatinine also went up to 1.8 and his white blood cell count was extremely low. All of these things together were enough to raise the flag! They performed a sonogram to look for bleeding or blockage and this was negative. The physicians made some adjustments to a few of his medications that may cause his white blood cell count to be so low. They also are having him complete another 24 urine collection. He will return to clinic on Friday for yet more blood tests and hopefully we will have better numbers or at least some answers. As of right now we have no conclusive data. We are hoping that all of the little "weirdness" is a just a glich and that on Friday his numbers will return to normal.

Prayer Requests: Numbers return to baseline, peace for donor family, safe travel for all this holiday weekend, healing for families in Joplin.

Bible Verse: "In your unfailing love you will lead the people you have redeemed." Exodus 15:13
(Please, pray that this verse moves my heart so that I know that the Lord is leading Jim and I and that He has a plan for us.)

And The Results Are In!

We finally received our lab results at the end of last week so the numbers are in (drum roll please)

Creatinine 1.6 (a little higher than normal but is probably going to be Jim's norm)
Potassium 4.7 (normal range)
Amylase 58 (pancreatic enzyme- normal range)
Lipase 27 (pancreatic enzyme- normal range)
Hemoglobin 10.7 (red blood cell count- just slightly low- has improved since last time without a procrit shot)


These are all very good numbers! We are extremely happy!!

Jim also had wound care today and 2 of the 3 wounds are closed! Praise the LORD!! The middle wound has made tremendous strides from where it was last week. I am estimating two more weeks on the vac and we should be pretty close to healed up. So for Jim he couldn't be happier to not have his man purse anymore. (the wound vac looks like a black purse that he has to carry everywhere he goes)

The have decreased his clinic visits to every two weeks and have weaned a couple more medications. We are pretty close to the regiment of meds that he will be on for the next 9 months and then they do another cut at 1 year.

Prayer Requests: Man purse is buried far far away (Jims' words), donor family receives comfort, continued good health

Bible Verse: "let us be thankful, and so worship God." Hebrews 12:28

Geek Squad Needed ASAP!

Today Jim had a clinic and a wound care appointment. I believe the Geek Squad is needed at clinic because we sat for 2 hours waiting for Jim to be called back to speak with the nurse and doctor because of an apparent switch to electronic medical records over the past 2-3 weeks, so everyone is still learning the system. I can only imagine how long it takes to add 10-12 medications per patient into a system but wow I have NO patience. They told us that they are having significant difficulty with record carry over so they are having to manually input most of their information. So, after many games of solitaire, words with friends, and jewels on my phone I lost my patience and entered a state of euphoria right in time for them to call Jim back. Unfortunately I do not have many lab numbers to report because with the electronic medical record change they sent Jim's labs off to an outside lab and we will not know the results for approximately 2-3 days. Hopefully this will get fixed by the next time Jim has an appointment so we will have the numbers that day. We did find out that Jim's creatinine was at 1.6 though so this is good news. The nurse practitioner told us today that Jim's range will probably be between 1.4-1.8 and that is where he will remain. Other good news is that Jim is going to get to wean off some of his medications, not the anti-rejection, but some of the stomach meds including Reglan and Protonix, these will become as needed. He will always be on some medication but it is exciting to be able to take some of them away.

Wound update- They are now only utilizing the wound vac on the middle wound. They slapped a very sophisticated "bandaid" on the other two wounds. The physician took at a look at the middle wound and is very happy with the progress it is making. So far the vac is much quieter- maybe we will be able to sleep with less gas noises coming from a charging vacuum between our two pillows.

Prayer Requests: Labs remain good- little lower creatinine would be great (but I don't want to be greedy), peace and support to the donor family,wounds heal quickly

Bible Verse: "Give thanks to the Lord for He is good and His love endures forever." Psalm 118:1

Anxiety...you are not my friend.

I haven't reported much lately because luckily there hasn't been much to report. Jim hasn't had any clinic appointments for the last couple of weeks so it has been relatively quiet in our house. He has had wound care 2x/wk with the wounds slowly but surely improving. They allowed him a short hiatus from the vac this weekend but sadly it will be going back on tomorrow. We do return to clinic tomorrow for our first appointment in 2 weeks thus the anxiety about what the labs will report. They will be looking at creatinine, anti-reject med levels, and pancreatic enzymes. I will be sure to write tomorrow and let everyone know how things went.

Prayer Requests: Labs look good, wound has improved, increased tolerance for Jim with his vac.

Bible Verse: "And He will be their peace." Micah 5:5

Cautiously Optimistic...ahh, feels kind of nice!

Jim and I are going to be cautiously optimistic after today's appointments.

His labs came back with good news-
creatinine stayed put, pancreatic enzymes came back into the normal range, potassium and phosporus are behaving, and his red blood cell count is climbing which hasn't happened in...well... it has NEVER happened, at least not on it's own since I have known Jim. These are all very good things!

His glofil test results came back as well and I have googled and googled and have not found a lot of information on how to interpret the results so if anyone has more information on this than I, I would love to hear from you. This is my very embarrassingly elementary understanding of the results. Apparently for a person with 2 good kidneys, not transplanted a perfect score is 100 or above, for a 1 good kidney transplanted person a good score is 50-100, a person on dialysis is around 20, and below 20 you are placed on a transplant list. Jim's score was 103 corrected and 118 uncorrected. I am not sure what that means other than that they told him that they were very happy with these numbers. On the lab report there was an H next to the 118 meaning HIGH however Jim did not ask any questions about this H so I have to just relax and be cautiously optimistic.

Jim's small pot hole like incision is also improving. The top incision has decreased in depth to 2.0, the middle and largest has reduced in depth to 2.5, and the bottom remains superficial however still inside the vac drape. They told Jim today that he needs to expect to wear the vac for about another 3-4 weeks. I could not be happier that he is filling in so nicely. I was starting to fear that I would soon be able to see through my husband in three different places had the vac not come along.

They have reduced Jim's clinic appointments to every two weeks, which provokes a small anxiety attack in me. I realize that I am not the expert and although I would like to think I am I must again RELAX and remain cautiously optimistic! I think that the Lord keeps placing these circumstances and experiences into my path so that I will realize that He is truly in control and I that I should at some point get tired of trying to steer. Well the Lord should smile today because I do realize that He is in control, however it may take me awhile, as in a lifetime, to have the faith to not try to lead.

Prayer requests: labs remain stable, continued wound healing, comfort for donor family

Bible Verse: "He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul." Psalm 23:2-3

HELP!! I'm Drowning!

This is what Jim felt like today when he had to complete a glofil test. Apparently this test is the most accurate way to determine kidney function.

What the test entails is:
1st- Jim drinks a small amount of iodine mixed in diet coke (YUM) and they inject his with a readioactive dye.
2nd- Jim drinks 80 ounces of water within 30 minutes. After he drinks all of this water he uses the restroom and then they draw labs. (He is starting to get sea sick)
3rd-Jim drinks 2 more glasses of water. After this water, he waited for 30 minutes and is required to use the restroom again and then they draw his blood, again. (He is putting on a life jacket at this point)
4th-Jim again drinks one more glass of water, waits for 30 minutes, uses the restroom, and more blood is drawn. (He is now doggy paddling while seated inside the clinic)

All of this water and blood are to measure how fast his kidneys dispense the iodine that he initially ingested. We did not get any of the results today so we are anticipating to get these on Thursday. As you can imagine one of the side effects of this test is nausea, and you may have guessed that Jim did experience this plus a little more. (poor guy)

The labs they did pull prior to the test, showed creatinine again at 1.5, pancreatic enzymes improving with one remaining a little elevated however much improved from last week. The other levels we look at were close to normal. He will most likely require a procrit shot this week secondary to anemia.

When Jim made it to wound care he was so nauseous that he couldn't really watch what they were doing. Per the nurse' report the bottom wound has almost closed, the top one has decreased in depth by close to half, and the middle one is taking its time, but improving.

Prayer Requests: labs continue to stabilize, wound continues to heal, prayers of thanksgiving for such wonderful support and love

Bible Verse: "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you." Isaiah 43:2

Wrong...Right... I like Right!

What I mean from above is that on Friday they pulled the wrong labs for Jim. This is a little frustrating when Jim's parents drove all the way down here in the bad weather to take him to the hospital for his labs to be drawn since the clinic was closed again. The doctor called and reported that his prograff level was very low and I explained to her that she is probably correct since he is not on prograff. They also did not pull his pancreatic enzymes which is exactly why we wanted his labs to be pulled in the first place because his Monday level was dangerously high. When I spoke with the doctor I explained all of the reasons why these labs were incorrect and she said she would get them corrected and wanted him to return today for another lab draw. This time, after both Jim and I were annoyingly repetitive about what they needed to pull, they DID report the correct items. The doctor called us this afternoon and it looks like his creatinine was 1.5 and his pancreatic enzymes were back to normal!!! Jim's cyclosporine level (which is one of his anti-rejection meds that affect his kidney fuction) was at 180 which is a little lower than they would like so they increased this medication again. Needless to say Jim's medications change from day to day so it is never a boring day in our "drug" world.

Prayer Requests: Continued stabilization of his labs, patience for Jim and I, comfort for the donor family, and a WIN for Green Bay!!

Bible Verse: "Give thanks to the Lord for He is good and His love endures forever."
Psalms 107: 1

And Again With The Bouncing

We had two appointments today- one at the transplant clinic and one for wound care.

1st- The transplant clinic appointment was bitter sweet. Bitter sweet because Jim's creatinine level went back down to 1.5!! YAY!! This in itself is great news, now let me try and explain the 2 reasons why it is bitter sweet. This creatinine level is directly correlated to a certain medication that he has to take. When the level of that medicine gets to low he has a higher risk of rejection, if it gets to high then it can be toxic to the kidney. Last week when we had the higher creatinine numbers his medication level was high. Today this medication level was too low, in turn putting Jim at a huge risk for rejection. They have increased the amount by 25mg in the hopes of preventing rejection. So...onto the second reason why it is bitter sweet, one of Jim's pancreas enzymes is off the chart high therefore raising a rather enormous red flag for his pancreas possibly rejecting. Is this number just random, directly related to the medication level being too low- or something else altogether, no one knows! They have scheduled him to come back in an extra time this week to check the level again on Wednesday instead of waiting until Friday. I am hopeful that by raising the anti-rejection med by 25mg it will stop the crazy pancreatic enzyme from doing anything else unnerving.

The 2nd appointment was his wound care/ vac change. This appointment went well. The bottom wound is starting to really heal up and is a much "prettier color." They have started using a material that contains silver and collagen. This dressing is placed into the wound beds and helps to speed up collagen production and prevent bacteria from growing. (Collagen is something the body makes when you are healing a cut/wound/scrape) I hadn't seen the wounds since last Monday and I am happy with how they are looking overall.

On a selfish note, I ask for prayers of hope and resilience. There are times when this process can start to get the better of you and although I know that we are on the winning end of this situation (I prayer for continued healing and peace for the donor family) it can still become overwhelming and exhausting. Jim has such a strong and calm demeanor but I feel that at times he is also becoming frustrated. I on the other hand, do not have this calm demeanor and I fear that it shows on my face eventhough I try really hard to be as strong as he.

Prayer Requests: Pancreas enzymes calm back down, kidney levels stay low, medication level evens out

Bible Verse: "For I know the plans I have for you, declares the Lord, "plans to prosper you, and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Still Bouncing

Bounce, bounce, bounce- Labs on Monday went a little worse- labs on Wednesday went a little better- so we continue to bounce. Since he bounced to the "better" side on Wednesday the doctors allowed him to go back on his blood thinners. His pancreatic enzymes also went up a little bit with one of them remaining in the normal range and one slightly higher so they are continuing to keep an eye on these as well. Jim and I are trying to take the "live day by day" approach which I think he is doing a much better job adhering to than I. We have weaned his predisone down to 12mg a day which is a huge decrease from the 20mg that we started at. The doctors have decreased a couple other medications as well which is appreciated. Needless to say he is still taking about 18 pills every morning and about 9 every night. We are very very blessed to have insurance and to have had such great support fundraising prior to the transplant. We don't go back to clinic till Monday so we have a couple of days to relax before drawing more labs.

The vac is going well for the healing and bad for the sleeping. Jim has to wear it 24/7 and charge it while he sleeps. This means that the vac sleeps in between us while being charged. While this charging is happening it has to stay standing up which is slightly difficult since it is an oval shape- To make the standing up possible it is stuck between our two pillows while it makes all kinds of interesting noises. (needless to say the first night I leaned over and hit my husband several times before I realized that the noises were coming from this little machine.) He is getting the dressing changed 3x/wk downtown. When he had it changed on Wednesday they reported that both of the larger wounds had reduced in depth from 3cm down to 2.5!! This is great news considering we spent the last 6 weeks just getting deeper. (I like to think that my being a little pushy isn't always so bad even when I am talking to a surgeon)

On a side note we would love for everyone to keep our dear friends the Andersons in your prayers. They and their son have been enduring many trials and tribulations lately so if you could lift them up to the Lord asking for strength we would really appreciate it.

Prayer requests: Wound continues to heal, labs improve and return to baseline, the Anderson Family, and peace for the donor family

Bible verse: "The Lord is my strength and my shield; my heart trusts in Him and I am helped. My heart leaps for joy and I will give thanks to Him in song. " Psalms 28:7

Hoover, Dyson...nope KCI

Have no idea what I am talking about? Well, KCI is who makes what is called a wound vac. What that is is a kind of vaccum that is hooked up to a dressing that will be on Jim's belly. It is to help his wound (incision) close. For the last 6 weeks he has had some trouble spots along his incision line that haven't wanted to close. This is in part due to the fact that he has been diabetic for so long and some of his medicines. I am excited about the vac because it means that his wound will close much quicker, and with a smaller chance of infection. Jim on the other hand is not so excited due to the fact that he will be hooked up to the vac 24/7. It is about the size of a roll of paper towels but in square form. It will have a strap and it can be carried around but I think it is bringing back memories of his insulin pump, that was also attached to him 24/7. Truly he needs to just get over it. (hehe)

His labs stayed close to the same with his creatinine again at 1.7, therefore no other tests or labs were drawn and we will wait till Monday for more labs. If you remember on this last Monday I gave several different possible causes for a decline in his kidney function with one of them being medicine. Well, one of these autoimmune medicines was too high so his dosage was decreased for the second day in a row. On Monday his level was fine but on Wed and Friday this level was too high. This level can actually be detrimental to his kidneys which is one of the reasons for all of the labs. It is ironic because you must have this medicine to keep the kidney but too much of it can actually hurt the kidney. We are working very hard to find the therapuetic amount needed. I'm hoping that when we get it right the kidney function will improve again.

Prayer Requests: Wound vac speeds up healing process, kidney levels continue to improve, comfort for donor family, and thanksgiving for stable Friday labs

Bible Verse: "My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; He is my fortress, I will never be shaken." Psalms 62:1&2

Baby Steps...

Jim's labs improved today from Monday however they are not as good as they once were. Since his numbers went down they did not do any other testing. They are having him come back on Friday to run labs again and hopefully his numbers will continue to go back down to his normal. His creatinine was 1.7 and his BUN was 25, greatly improved from Monday's 1.9 and 35.

He also will have his wound care evaluation on Friday which I am very grateful for. I have been blessed to be one of those people in the world that love to pick, pack, and play with wounds however when you are completing all of these things on your own husband it gets a little personal. I have to say that it was a little struggle last night, I will spare you the details. If you like wound care give me a shout and I will go into the specifics.

On a side note, Jim and I want to offer a prayer up for all of you... for your love, prayers, and overwhelming support. Thank you so much! We are unimaginably blessed!

Prayer Requests: Numbers continue to go down, wound care goes well on Friday, thanksgiving for improved labs today!

Bible Verse: "Not only so, but we also rejoice in our sufferings because we know that suffering produces perseverance; perseverance, character; and character, hope." Romans 5:3

A Little Set Back

Well...today definitely did not go as planned. Jim had a typical follow up DTI (Dallas Transplant Institute) appointment this morning and we were thrown for a small loop. As usual, we have labs drawn and they closely look at his creatinine and pancreatic enzymes. This morning his pancreatic enzymes were on target but his creatinine had jumped up quite a bit. On Thursday it was 1.6 today it was 1.9. Now this may not seem like a large jump numerically speaking but in relation to function this is a rather large decline.

What does this jump mean? It can mean many different things.
1- Jim is dehydrated
2- His one anti-rejection medication is too high
3- There is a build up of fluid around the kidney preventing it from doing its job
4- Rejection
5- Circulation difficulty
6- A weird fluke
7- His old kidneys are completely giving out

Plan for the following 7 possible causes:

1- Jim is going to drown himself with water over the next two days in the hope that this will lower his creatinine level again.
2- His anti-rejection medication level today was fine therefore the decline in function is not due to this unfortunately. I was hoping for this answer for it would be an easy fix but no such luck.
3- They completed a preliminary ultrasound on the kidney finding a small fluid pocket around the organ but nothing that was concerning or enough to prevent the kidney from working properly thus this cause is eliminated.
4- Rejection- the forbidden word when receiving a transplant- I feel bad just typing it. Well, this is always a possibility. In order to rule this out we have to wait till Wednesday when he gets his labs drawn again and we see what the creatinine level is. If it is still high then he will probably receive a more in depth sonogram and then further treatment as needed. This treatment can be anything from a biopsy of the new kidney, an angiogram, admission for stronger anti-rejection medications, and lots of things I don't even know about yet.
5-While doing the ultrasound they found that one of the arteries going into the kidney has a high amount of pressure behind it. (in general it is currently acting like a hose with your thumb blocking the nozzle so it sprays harder) The surgeon reported that this may just be a small kink or twist in the artery or it may be a thickening of the wall meaning they would need to further explore this for solutions.
6- A fluke...really? Who knows? Stranger things have happened
7- Apparently his old kidneys are still working a bit. (for those of you that don't know- they do not take the old organs out so Jim currently has 3 kidneys and 2 pancreas' (sp) When the old kidneys fail completely there can be a slight spike in his creatinine level.

I am sure that there are other possible reasons as well that I am not smart enough to know about but these are the ones that I learned about today.


On a completely different note, in visiting with the surgeon he approved Jim going to the wound care specialists for his incision. Do not be alarmed by this- I am just over protective. (as if you didn't know this already) Since I have done wound care in the past I was probably a little more demanding than his average patient's family. In order to get the dressings that I want for the incision we had to be referred so I am happy about this event. Jim currently has about 3 places that are not closing completely and in order to pack them appropriately I wanted him to be referred. We should hear from them this week and he will go and be evaluated and hopefully some new dressings will be implemented.

Prayer Requests: Jim is NOT in rejection and this set back is minor, strength that I do not completely lose it, patience while we wait to see what is going on, comfort for the donor family, knowledge for the physicians

Bible Verse: "Therefore as God's chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience." Colossians 3:12

Slow and Steady Wins the Race

If you know my husband you should find the title a perfect way to sum him up. He is just that, slow and steady, but in the most endearing way possible.

His numbers are slowly coming down into the normal ranges, and for that we are so grateful. His creatinine is floating between 1.4-1.5 which is a drastic improvement from a couple weeks ago. His potassium has come down into the normal range, however we continue to remain on a yellow light for eating potassium rich foods. His pancreatic enzymes have also been in the normal range for the last two lab draws. He continues to remain anemic so he has received two procrit shots this week to try and improve this.

There are two numbers that continue to float a little too high for my liking, his sugar and his blood pressure. Jim is no longer deyhdrated which is fantastic, so we have temporarily discontinued his water retention medicine. As this gets out of his system we are hoping his blood pressure comes down a bit. They are not soaring as they once did prior to the transplant but in order to protect his new kidney we need to be sure to keep them in the normal range so the doctors are keeping a close eye. His blood sugar has also be rising in the evening. The doctors are attributing this rise to the high dose of steroids that he is currently on, therefore they have begun to wean this down by 2mg a week. The hope is that as the steroid reduces so will his sugar. I look at what I consider high now in comparison to prior to the transplant and I can't help but smile and thank the Lord for his many blessings.

They are keeping Jim at a regiment of every other day appointments since we have had to do some medication changes. Of course, if you know me, I am elated about this and couldn't be happier with Baylor and Dallas Transplant. I think they know that if they don't bring him in for an appointment I would place them on my speed dial. (and they probably don't want that-although I don't know why not, I'm fun to talk to)

Overall, Jim is doing wonderful. We have a few speed bumps here and there but we are so grateful for this gift.

Prayer Requests: Peace and comfort for donor family, Jim's sugar and blood pressure normalize, creatinine continues to come down, anemia improves.

Bible Verse: "Then you will call, and the Lord will answer; Here am I." Isaiah 58:9