Good Report Card and a Smiley Face

Jim had is first clinic visit on Thursday. Once a month he is scheduled for a clinic visit which consists of blood work, doctor visit and a review of his PD sheets for the month showing the amount of fluid intake and output. On each visit he gets a "report card" showing the results from his prior blood test. This week he received an "Excellent - Good Job" report card along with a smiley face sticker:

Albumin-Normal
Calcium - Normal
Phosphorus - Normal
PTH (parathyroide hormone level) - Good
Potassium - Normal
Glucose - Normal
Hemoglobin - High

Also earlier in the week he had a PET test done (peritoneal equilibrium test). This measures how quickly waste products and fluids are removed from the blood during dialysis. His current "green bags" (2.5 solution) seem to be adequate and doing the job nicely.

One more week of manual dialysis then he will begin using the overnight cycler. I must say I am very proud of the way Jim is handling the manual exchanges. He is doing a great job. I must admit I will miss the little "jiggle dance" he does at the end of his drain. Apparently swaying back and forth helps remove that last little bit of fluid during draining. 

I hope Jim continues to get smiley face stickers and good results on his report card. It was even nicer to see a smiley face on Jim last night doing his exchange.....

Moving Right Along

Good News....Jim's first week of dialysis training is going well. We were glad to see that his catheter must have shifted in his belly and he is now draining much better. After watching his PD nurse do the manual hookups, Jim is now beginning to do the hookups himself. So well, that he may actually be on his own this weekend doing the exchanges himself 4 times a day. The good news is that he is getting additional fluids out with each exchange. All those bad toxins that his kidneys are not able to process hopefully are being flushed from his body and will make him feel better.

He is getting closer to be able to shower...hopefully this weekend.

Bad News....The first few days of training Jim did with a very bad case of gout in his right knee. It's getting better. The PD nurse said that dialysis will definitely help with his gout.

Monday we will spend most of the day at the dialysis clinic talking with the dietician, doing labs and talking with the social worker.

Jim's outlook seems to be much better. I think he is finally realizing this will be his new way of life....at least for a while.

Finding the Right Position

Today's Jim's visit to the dialysis center went ok. His catheter was flushed again. While the draining of fluids went ok, Michelle (his PD nurse) was concerned as to why his draining seemed positional. In other words, it seemed to drain better when he was standing. The drain flow should be the same whether standing or sitting. She wanted Jim to have an x-ray done to see the position of the catheter in his belly. After cleaning his exit site, (and again being told NO SHOWER), we proceeded to Barnes to have an x-ray done. She was right... the tip of the catheter is a little high in his belly. She wants him to take magnesium citrate to see if this cleans out his belly. If this doesn't work, they will have to put a wire inside the catheter and try to maneuver it around. Jim's main concern was having to have the procedure done over, something he doesn't want to do.

His training on manual dialysis starts on Monday. He will do manual exchanges for about 3 weeks before being trained on the cycler (which is done at night). Supplies have started to arrive (where or where to go with them) and his dialysis room (aka Lindsay's bedroom) has been cleaned, sanitized, and dedogged.

Jim is now feeling good and walking around much better. His spirits are still down, but hopefully once the apprehension of this new way of life begins, things will feel more normal. Oh yes...and once he is able to shower again, should make him smile.

The Time Has Come...

Today was Jim's second post-op appointment at the dialysis center. Nurse Kathy did another flush. This time it went much better. We also met Michelle who will be his home dialysis nurse. We have training scheduled for the week of December 10th. At that time Michelle will come to the house and teach Jim how to do a manual exchange. This entails 4 exchanges a day each one taking about 30 minutes. It is necessary to learn the manual exchange in case of power loss and electricity for the cycler is not available.

We return to the center next Tuesday when they will watch Jim clean and change the dressing himself. Our next step then is preparing a room at home for his supplies in preparation for training.

Each day he continues to get stronger.

My thoughts...While we never hoped this day would come, it has. Maybe we were just wishful thinking he could have a transplant before dialysis. That's not going to happen. We deal the cards that are dealt us and make the most of it...and hope for the best.

Missions Possible

Today we went to the Wash U Dialysis Center to have Jim's bandage changed and the catheter flushed out. Ironically, our nurse Kathy remembered treating Lorraine and training her on her cycler almost 20 years ago. It's encouraging to work with someone who obviously loves and knows what she is doing.

After cleaning his incision site, she put in 500 cc's of fluid along with a dose of heparin through his new catheter. While only 300 cc's fluids came out, for the most  part it was working. She attributed the low drainage return to his bowels. Since the catheter sits so far into the intestines, any type of blockage will slow down the output and since his bowels have not moved for almost a week that is most likely the cause.  Mission #1....Poop!

While this all seemed overwhelming for Jim, he was a real trooper. While he said he was not in any pain, he briefly seemed to hyperventilate. It could have been from the mask he was wearing (which we all worn during the process) along with all the anxiety of this new piece of equipment now extending out of his belly, whichever, he was good. Until he heard the part about not showering for another 4-6 weeks. While his incision site looks good, it still needs to heal completely before getting wet. Mission #2...keep him somewhat hygienically clean so we can stand being around him.

Her intent was to begin training on the cycler within the next 2 weeks. After next weeks appointment, we can better determine a training schedule which will be 5 days of in-home training on the cycler. In order to prepare, we need to have a sterilized room (sorry no dogs allowed) and enough space to store the boxes of solutions. I remember this so well with Lorraine. Piles and piles of Baxter boxes of dialyzing solution. Mission #3....clean, sterilize, "dedog" the bedroom and find storage for our new house guest the cycler.

My Thoughts.....Thanks again for everyone's  love, kind words and support. I continue my search everyday for a living donor, but in the meantime, we will embrace the best we can this new life changing development and as I continue to tell Jim to keep positive thoughts. Sometimes easier said than done....

PD Cath is in Place....

Today was Jim's surgery to place the PD catheter in his belly. While surgery was only about 45 minutes, the pre-op and post-op time was long. Jim had alot of pain post-op and we had to wait until his pain was under control before we could leave. He continues to take his pain meds every 4 hours. The ride home was bumpy and uncomfortable for him and he was quite nauseous by the time we arrived home. He's been resting comfortably. We will see what tomorrow brings...

My thoughts: I can vividly remember seeing Jim's grandma and his mom being in this same position. It saddens me that I didn't help them more while going through their treatment. I probably could have learned alot. I honestly believe they are both helping him through this.

Surgery Scheduled

Finally heard from the surgeon. Jim's surgery to insert his catheter is scheduled for November 14th. We are also scheduled to attend a class on peritoneal dialysis (PD) on November 19th.

I continue to find some great resources in searching for a living donor. I have been in contact with a couple potential donors. I get alot of inquires from people wanting to sell their kidneys. Wow...I write them back and inform them that it is illegal in the U.S. to sell organs and to stop wasting peoples time. What is this world coming to???

The Waiting Game

Why does it seem like everything in the medical field takes so long? You wait for the doctor at your office visit. You wait for the doctor’s office to call you for an appointment. You wait for the doctor to call you to schedule surgery. You wait for test results. You wait for a kidney donor. Perhaps it’s just me being impatient, but nothing seems to move quickly.

Jim met with his surgeon last Monday. Dr. Jason Wellen will be inserting the catheter in Jim’s belly. He told him because of his very obnoxious appendix scar, he will have to place it in a little different spot because of scar tissue from his appendix scar.  He left there being told "we will call to schedule procedure within the next couple of weeks". We wait….

The following week on Monday he met with the anesthesiologist and the pre-op people to go over the procedure with him. He completed and signed all his consent forms. He left being told "we will contact you in a couple of weeks". We wait…

Perhaps it’s just me being impatient. Perhaps it’s just me seeing Jim sleep more and more than usual and finally realizing that dialysis will probably be good for him. Ridding him of the toxins in his body making him so tired all the time. Perhaps it’s just me seeing how worn out Jim is from working 10-12 hour days some weeks. Perhaps it’s just me….

My Thoughts:  I continue to scour Facebook and other websites for hours upon hours looking at the numerous groups that support living kidney donation. I have met several people online and it is reassuring to know that we are not in this alone. So many people are in our same situation. It is also encouraging to see how many people successfully find their donor via social media. I apologize to all my Facebook followers for the excessive kidney donor postings I put up, but the more people we make aware of Jim’s situation and the more you SHARE on your site, the better our odds of finding a living donor.

I am grateful for everyone’s love, support and prayers. I am grateful to have Jason helping me with so much around the house that Jim is not always able to do. I am grateful for the times life seems normal. In the meantime, we just wait….

The Next Leg of Jim's Journey

Jim’s doctor visit today was not what we were hoping for, but we knew it would come one day. Since his BUN and Creatinine levels were both up, (BUN was 79, 8-25 being normal and Creatinine 6.2, 0.70-1.30 is normal). Dr. Rothstein wants Jim to start preparing for dialysis. After some discussion with him and his nurse, he felt that peritoneal dialysis would be Jim’s best option. This type of dialysis gives you more flexibility with your home life and you are the one in charge. Lorraine did this type of dialysis 20 years ago. What I remember is a huge machine in her bedroom with lots of bags of solutions hanging all around and she had to keep everything very sterile. Apparently things have changed since then. The machine now is like a suitcase and is portable so it can be taken with you. The bags of solution are more confined.

The first step is to have a catheter placed in Jim’s belly which is the hook-up point. This is done as an out patient.  A couple weeks after this is done, he will go for a weeks training on how to use the machine. I like that the doctor told him that this will be “his” responsibility, not mine. I can observe, but Jim will have to do everything on his own.

The first month he will have to do a manual transfer 3 times a day (not sure how this is going to work with his job, but we will figure that out). After a month, he will be able to connect to the machine and dialyze for 8 hours at night. Hopefully this will give him more energy (which he has been lacking) and he was excited to hear that he would be on a high protein diet (lots and lots of red meat). Not sure how this will affect his ongoing battle with gout, but we will wait and see.

The doctor and I both told Jim to look at this as a temporary thing, hoping that we are still able to find a living donor or his number is finally called on the UNOS transplant list.

I will keep my ongoing search on Facebook and other social media in hopes of finding that one true angel that is out there and can help him. In the meantime, we will march on with this new leg of Jim’s Journey and hope and pray it goes well.

My thoughts….I have always been an optimist and look at the good in things. This is no different. I see this as a chance for Jim to get his energy back and to rid him of the toxins in his body that his kidneys just aren’t able to get rid of. I know that my 30 lb. weight loss was not done in vain because I feel so much better about myself and will better be able to help him….besides me being a donor just wasn’t in God’s plan.

My Mission

Since I am not able to be a living kidney donor for Jim, my mission now is to find him one. In our world of today’s social media, you hear so many stories and read so many articles about people willing to donate to perfect strangers. I have found many websites and have been on many message boards in the hopes of finding that perfect stranger. 

Wish me luck!!!

A Sign

sign

n.

1. Something that suggests the presence or existence of a fact, condition, or quality.

2. A portentous incident or event; a presage

I have always believed in “signs”.  I think I have to accept the fact that this is a sign. I am just not meant to be a donor and I should realize that there will be better things to happen because of this…..perhaps if I was a donor, there is always that chance of rejection (what a waste that would be), or perhaps I need to hold onto my kidney for someone else (perhaps years from now my kids may need one and with improvement of modern medicine, I will be able to do so). Whatever the reason, I have to move on and try to help Jim in other ways…….

Yesterday I spent the day at Barnes Hospital again retaking the Iothalimate Scan that determines your GRF reading (kidney function). I last did this in March which showed my kidney function was at 76%. Since then I have lost weight (which is a factor in the calculation) and had hopes that my kidney function would have improved.

Also in the afternoon I had a consultation with Dr. Vijayan, one of the kidney transplant doctors at Barnes to go over my records to evaluate me to see if I would still be able to be a potential donor. Tests results from what I had done that morning weren’t yet available, but in her opinion, since I was still on the “low-end” of the kidney function, as well as my blood pressure being extremely high while I was there, she does not feel that I would be suitable to be a donor any longer. While this is not the news I wanted to hear, she did help me realize that she is looking out for my best interest and that I will still be able to help Jim in other ways. Ever since we were told that I was a match, we thought this was going to be simple and easy. It’s been neither.

So basically, we are back to step one. He will continue to be on the UNOS transplant list, hope that they find a match, educate ourselves on the different dialysis options, and continue to look for “signs” that will help us all during this journey.

The "Jug" and the Pickle Jar

On Jim’s last doctor appointment, his kidney doctor was surprised that my kidney function was not good enough to be a donor. He asked if I was willing to have my creatinine clearance checked by doing a 24 hour urine collection. This is another way of checking kidney function.  Of course I was willing to do this. I have been very disappointed that my 76% kidney function is not good enough to be a donor.

So a few weeks ago, unbeknownst to my co-workers, I collected my urine all day at work and at home. I must say that this is not an easy task to hide a “jug” and a hat-like device to pee in, in particular when I find myself peeing 10 or more times a day. But it worked out just fine. I then strategically placed the “jug” (in a plastic bag of course) in the refrigerator hoping that no one would mistake it for apple juice!!

The other feat was getting it home from work. Getting it there was easy, but then my walk from the office to the MetroLink station was fun. My jug was now almost full. If there was anytime someone was going to mug me on the train, I was hoping now was the time. However, I did make it home safe and sound with my pee jug intact.

Since I started collecting my urine in the morning, I had to continue it until the next morning. I was quite concerned when my “jug” was full that night I went to bed. Remembering them telling me to call “all my urine” in a 24 hour period, I searched for a jar. Aha… the glass pickle jar would do.  So my collection continued and filling that pickle jar was not a problem.

The next morning I once again loaded my “jug” and pickle jar in my workbag and headed to the train. I was able to stop at the Barnes Hospital stop and deposit them my “jug” and my pickle jar with no problem.

About a week later, Jim’s doctor called to tell me that my creatinine clearance did show that I had 80% kidney function. He then advised that he was going to contact the transplant team and let them know of these results.

My thoughts…..how is it I can take 3 different tests and continue to get 3 different readings on my kidney function. I say we go with the best odds of 80%.

To Hemo or Not to Hemo

During Jim's doctor visit today, we talked about the options of hemo dialysis vs. peritoneal dialysis. While we have always thought we would go the hemo route, his doctor feels that peritoneal dialysis would be more flexible and a better choice for Jim. Some of  the advantages are that you do at home while you sleep, less diet and fluid intake restrictions, and does not make you tired as with hemo. It doesn't require the fistula in the arm, but a catheter is inserted into the abdomen.

The good news is that we still have time to make our choice. Jim's levels are still good and we are STILL hoping for a living donor transplant. On that note....I am hoping to be retested to see if my kidney function has improved. I am going to do a 24-hour urine analysis followed by bloodwork to get a better look at my creatine clearance. Hopefully it will show that my kidney function has gotten better and will be able to be a donor. We have worked so hard for this. We talk about what motivates us in my Weight Watchers meetings. What better motivation than to be given a chance to help my husband.

So while I sit here and ponder to Hemo or not to Hemo, I'm secretly hoping we never have to make that choice.

Nothing New

I know that it's been a while since I have posted anything, but it is because there really isn't nothing new to report since last month.

Jim's next doctor's appointment is June 12th so we won't know our next step until then. What we do know is that Jim will have to have his fistula redone in his arm. He still has no blood flow in the fistula he had done a few months ago. Apparently this is fairly common having to have it done more than once. Jim still feels good and his appetite certainly hasn't failed him. Beside a few days with "the gout" last week, he's been doing good.

In the meantime, I am still doing Weight Watchers and have lost 17 lbs.so far. Hopefully if I continue to lose weight I will be able to be retested to see if my kidney function has improved. My blood pressure on one medication is good, so I'm all set.

It is nice to have a couple months "doctor free". Life almost feels normal again.

WHY IS THIS SO HARD!!!

Found out today that once again I am no longer able to be a kidney donor for Jim. The results from the test I did on Tuesday show I have 76% function of my kidneys. In order to be a donor, 80% is the minimum required. 4%....really.

I was told that everyone loses renal function as they age (I'm 52 for heaven sake). I was also told that I can improve my kidney function by drinking more water (I have been drinking so much water I am starting to think I'm part camel), and also by cutting out soda (haven't had a Diet Coke since Ash Wednesday) and if I continue to lose weight (have lost 12 lbs. since January) that may also help. 

While I want to do this more than anything in the world and while I think I'm doing everything possible, it is still discouraging. Hopefully I will be able to be retested again in a couple months if I continue will all of the above. 

I'm not giving up hope....just wondering why this is so hard.


My Thoughts:  I'm guessing God has another plan for me....I just wish I knew what that was.

Iothalimate Scan (GFR)

Today I spent 5 hours at Barnes doing my Iothalimate Scan in order to get a more accurate GFR reading. GFR is the best indication on your kidney function.

I started off drinking 6 drops of potassium iodine. What this does is it blocks the radioactive tracer I am injected with from going to my thyroid which forces it to go to my kidneys. Blood is drawn every 30 minutes for the first 2 hours and then once an hour the last 2 hours. I was able to move around and go outside and enjoy the particularly beautiful day today. I was able to read my book and watch TV to also pass the time.

The blood is then put in a machine where it takes 3 hours to process the results. All in all is wasn't bad. I should hopefully hear back from the transplant team this week with the result and we will be able to proceed with the next step. I'm thinking very positive thoughts.....

Finger & Fistula Update

Jim’s last appointment with his finger doctor went well. It is healing nicely and looks like skin grafting will not be necessary. He keeps it uncovered for a few hours a day and no longer needs to keep a splint on it.  He goes back in a couple weeks for his next appointment.

His fistula…not so good. It does appear that there is no blood flow through the vein. Before he proceeds with another surgery to find another way to hook up, the vascular surgeon would prefer to see what the outcome of my test (tomorrow in fact) as to whether or not we are able to continue with a transplant. If a transplant is imminent, there is no need to further pursuing the fistula. So I guess it’s all up to me!!

Tomorrow I’m having my radioactive tracer done which gives a better idea of my kidney function.  I am to be at Barnes at 9:00 and the entire procedure will last 4 hours. Every hour my blood is checked to get a reading of my kidney function. I’ll post more tomorrow, but in the meantime….please keep praying that my kidney function will be sufficient to proceed with the transplant.

Training for the Olympics....

Jim’s 2 month visit to his nephrologist went really well today. It appears his blood work basically stayed the same and improved somewhat from 2 months ago. He was, however, concerned with his fistula. He wasn’t hearing much “movement” in the vein. The doctor gave him a rubber ball to squeeze and hold while Jim is sitting in a chair to hopefully increase the blood flow. Jim has his follow-up appointment next week with the vascular surgeon that did the fistula.

He has no symptoms (poor appetite, metal taste in mouth, shortness of breath, etc.) that would indicate an immediate need for dialysis yet. So that is good news. While Jim did gain a couple pounds, the doctor stressed how important it is to stay in good shape. He advised Jim to walk or exercise. He said to look at this whole kidney transplant as training for the Olympics. It requires a great deal of stamina and being in good health will only help the situation.

I have my radioactive “tracer” scheduled for next Tuesday, March 13th at 9:00 am.

Jim’s next appointment with his kidney doctor is June 12^th. Let’s hope he once again gets a good report!!

Next Step......Radioactive "Tracer"

Another requirement to be a kidney donor is that you must have minimum 80% kidney function. My creatinine level is 0.94 and with a formula they calculate that I have between 63-70% kidney function. To get a more accurate account, in the next couple of weeks I am scheduled for a procedure wherein I have a radioactive “tracer” injected into me and blood samples are then taken over the next 4 hours to measure how quickly the radioactivity disappears. This gives a more accurate percentage of kidney function. If it is below 80% I will not be able to be a donor. Keep your fingers crossed that it will be over 80% and that I don’t end up “glowing” in the dark.

My Turn

Today was my turn for testing.  It went fairly quick. I had 9 vials of blood drawn, a chest x-ray, urine test and an EKG done. Once everything comes back ok (as I’m sure it will)…..we can proceed to the next step.  A CT angiogram of my kidneys.

Let’s keep this moving…..

Sometimes it doesn't pay to get out of bed....

That’s what Jim said today when he called me at 9:30 am from the Emergency Room. My initial vision was of him with the new “fistula” in his arm rupturing. Thank goodness, but……

I can usually tell from the tone of his voice if something is wrong and I felt that tone. Today was his first day back to work since the surgery he had in his left arm. While he usually works the night shift, today he was on the day shift working with someone unfamiliar to him. While Jim had his right hand in the press adjusting springs, the guy decided to turn on the press. Not a good idea.

While he still has all his fingers intact…..it completely peeled off the skin  from the tip of his middle finger. While he probably will have to have skin grafts on his finger, he said he was feeling ok. He was able to drive home. So for now he has limited use of both his upper extremities.  I think I’m going to have to buy him shoes that velcro.

Can’t wait to see what tomorrow brings…..

Ready for Dialysis??

We hope not. But just in case, Jim is now equipped with a fistula in his left arm should the need for dialysis occur. While it will take about 3-4 months before it heals and could be used for hemodialysis, if it never gets used, thats fine. It's not hurting anything. That's what we're hoping for.

We arrived at Barnes at 7:00 am this morning for the procedure. They took him to the OR around 8:30 am. The procedure lasted around 1 hour. While Jim wanted general anesthesia, the anesthesiologist opted for a local anesthetic. They assured Jim that if he was feeling pain, they would keep him sedated enough to control the pain. He said he was able to hear while the procedure was going on, but also was able to sleep some. The recovery time with a local anesthetic is much quicker and we were out of the hospital by noon. He has a 5" scar on the inner part of his arm. While it is open (no bandage covering it) and is somewhat bruised, it doesn't look bad at all. I knew he was feeling ok when in the typical Jim fashion he said he was hungry and wanted a cheeseburger!!

He is home resting now and recovery should be quick. The only long-term effects he will have with a fistula in his arm is that he can never have an IV or his blood pressure taken in that arm. It could cause the fistula to clot. For the next few days he has to take the stethoscope he was given (god only knows how much that cost us) and check the "heart beat" of the vein to make sure it is getting blood flow. If he feels tingling or coldness in his arm/fingers, he is to call the doctor immediately. This means he is not getting blood flow through the vein. He was also sent home with plenty of paid meds (his favorite) which always helps.

My Thoughts.....All in all everything went very well today. While this is the next step in Jim's Journey, we are still hoping for a successful transplant in the future. Fingers (and fistulas) crossed.

Back on Track

I have been working really, really hard for the past 9 months on getting my blood pressure under control. At my doctor’s visit on Monday, I was getting good readings. Dr. Roth has been increasing the dosage of my blood pressure medication gradually and I am officially on just 1 medication. This is one of the requirements in order to be a kidney donor.

I also started Weight Watchers about 5 weeks ago and have lost 6 lbs (hopefully more….weigh-in is tomorrow!) and she thinks that may have also helped. I’m continuing to go to the meetings and hopefully will continue to lose weight.

I contacted Jean, the transplant coordinator at Barnes, this week and after discussing with the transplant team, I am officially reactivated as a potential living donor.  I can now proceed with the rest of the testing. I have an appointment on Wednesday, February 22^nd to go to Barnes for additional blood work, screenings and x-rays. Once that is complete, the next step is a CT angiogram of my kidneys where they run dye through my veins to make sure my kidneys are properly functioning.

While this seems to have been a long detour….hopefully we are back on track.

Surgery Scheduled

Today Jim had his pre-op appointment for his fistula surgery. It is scheduled for Wednesday, February 15th. While it is done as an outpatient procedure, it is still a 1-2 hour procedure done under general anesthetic. Dr. Patrick Geraghty is the vascular surgeon performing the surgery at Barnes.

Here is a better explanation of what will happen....

An AV fistula is a dialysis access that is created by connecting an artery to a vein during a short surgery. AV fistulas can be created anywhere from the wrist through the upper arm.

 

The process of hemodialysis requires that blood pass through an artificial kidney. With a fistula, blood from the arterial side of the fistula passes through a needle into the artificial kidney, is cleaned, and returns to the body through a needle in the venous side. A fistula is useful because arteries are deep in your body and would be difficult to get an access needle into.

The recovery time is pretty quick and complications are minimal.

In the mean time, I continue to work on my blood pressure. I started Weight Watchers 3 weeks ago in hopes of losing weight which would help with my blood pressure. I have increased by blood pressure medication and go back to my doctor on Monday. While I would love to have a handful of Oreos and milk for a snack tonight.... I'm going to settle for an orange.

Once I can get my blood pressure under control, hopefully we're on our way for a transplant and this whole fistula surgery will have been for nothing. Keep praying......

I Wish....

I wish there was a cure for PKD.....
I wish Jim could sit in his chair without falling asleep....
I wish Jim could eat a big 2" steak that he loves so much....
I wish Jim would never have to go through dialysis....
I wish Jim could sleep without a big fleece blanket covering him....
I wish it was a law that every deceased person's organs would be donated to someone in need....
I wish my blood pressure would come down....
I wish I could lose weight then maybe my blood pressure would come down....
I wish Jim didn't get gout and that the medicine he takes for it wouldn't make him sick....
I wish Jim had the energy he once had....
I wish Jim didn't have to go for blood work every month....
I wish Jim didn't have to have a fistula put in his arm in anticipation of dialysis...
I wish I was stronger....
I wish Lorraine was still here...

I wish wishes came true....

Next Step....Fistula

Today was Jim’s 3 month checkup with Dr. Rothstein his kidney doctor. While his kidney function continues to deteriorate, he still is feeling good. He actually gained weight, which the doctor said was a good sign.  Once he starts to lose weight, has no appetite, (yea….like that’s ever going to happen), or has a metallic taste in his mouth, those are signs that the toxins in his body are building up from lack of kidney function and would then have to start dialysis.

His next step is to have a fistula put into his arm for when or if he would have to start hemodialysis. A fistula is an enlarged vein (usually in your arm), created by connecting an artery directly to a vein. Connecting the artery to the vein creates much greater blood flow into the vein. As a result, the vein enlarges and strengthens, making inserting of needles for hemodialysis treatments easier.  This is done as an outpatient procedure by a vascular surgeon. Lois, the nurse coordinator, is setting up an appointment with a surgeon to have this done in the next few weeks.

It is best to have this done ahead of starting dialysis. If you wait too long and may require dialysis sooner than expected, and do not have a fistula for access, a catheter is inserted into your neck or leg as a temporary access.

Vicki, the social worker, came in and talked to us about dialysis. While our plan is to still have a living donor transplant, she has to tell us all the options in case that doesn’t happen. She told us about Dr. Koch who has a dialysis center in Fairview Heights that they refer patients to. While it would be more convenient, Jim seems to like them at the Barnes dialysis center and would be ok going there.

Dr. Rothstein then came in and wanted to make sure we knew of all the dialysis options. He talked about peritoneal dialysis (which is what Lorraine did at home).  It is done with a machine while you sleep every night. Initially this was Jim’s 1^st choice, but with his work schedule, it may not be viable. I think he is finally ok with the hemodialysis. Our hope is that he won’t have to make that choice.

I am still working on my blood pressure with one medication. I see my doctor next week and hopefully we will be able to find something that works.

Jim has to now start going once a month now for blood work and will continue to see the doctor every 2 months.Please keep him in your prayers.....

My Thoughts....I can't help wonder how many people are not organ donors. I hope you have the organ donor box checked on your drivers license and talk to your family about it. This simple thing could save so many lives. Someday YOU may need it.