Monday, January 31, 2011

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

Thursday, January 27, 2011

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

Saturday, January 22, 2011

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

Wednesday, January 19, 2011

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

Monday, January 17, 2011

A Little Set Back 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

Wednesday, January 5, 2011

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