Llens

Friday morning

2010-04-16T04:38:00.000-07:00

Well it has been a week. Denise is moving pretty well. Her left hand is still weak and a little uncoordinated. The nurses and therapists get her up two or three times a day for a walk, without a walker. Yesterday she went to a therapy kitchen to make sure she can maneuver around unassisted.
Her blood pressure is still bouncing, but at lower levels 140 to 170. The staff is liking that. Denise should get her staples out today. She has 30 staples in her head from the craniotomy. I am sure that it will feel better when those are out.
Denise will get another in hospital Dialysis today. She was hoping to go to her regular place and give all the girls hugs and say thank you.
We would like to say thank you to all of you. Your thoughts, actions and prayers have been felt and appreciated. We are out of the woods and without your support, it would have been unbearable.
God Bless.

Wednesday - More blood pressure battles

2010-04-14T13:45:00.000-07:00

The struggle with Denise's BP continues. They want to get her under 160 and stay, but she has been all over the place. 146 to 202 has been her range today. They are still adjusting her medications, they have doubled the dosage of the newest BP medication.
Amber, Cody and I went to Cedar Falls Health Care. Took a quick tour of the place. It's nice enough I guess, but it is a Nursing Home. Smells like one, looks like one, yeah it's a nursing home. We met with the Therapist there, she was nice enough to give us a tour. Discussed Denise's condition and what they would put her through. Evaluation will occur when she arrives.
It is now 3:40 and they have advised that Denise will be moving to room 335 at Allen. Guess they feel the have the BP as under control as they are going to get it. Someone should become an voice for BP research. We just do not understand it yet. It impacts so many areas and functions of the body. How many problems are indirectly caused by high blood pressure?
High Blood pressure and blood thinners are the reason we are here now...

Post Procedure

2010-04-13T15:18:00.000-07:00

Finally, after waiting most of the day (without food), Denise went in for her "Inferior vena cava filter" (Umbrella Surgery) at 3:30 this afternoon. Dr. Tony (O) said the procedure went well. Her blood pressure continues to be a struggle. She has been above 170 more than below it today. It did delay the procedure a tad.
Now she is back in her room. Breakfast-Lunch-Supper has arrived. Amber and Cody are feeding her as she has to stay flat for awhile.
Dr. G reviewed her blood pressure meds and is making some adjustments. We are supplementing Lacinapril with (Labatilol & Hydrolozine) something I can't remember. Whatever they are, they are available in both IV and pill form. This is a twice daily dosage, so will see how this works for her. We can not leave ICU until they get her BP under control.

The gal from Park View (Rehabilitation Hospital - skilled care) came today to evaluate Denise. Unfortunately Park View doesn't accept smokers. Denise told the gal that she would not quit right now, that she wanted to smoke. So Cedar Falls Health Care was recommended. They still allow smoking in designated areas.

We will be staying in ICU another night. Then at least one night on the general floor.

Another important day for Denise

2010-04-13T05:58:00.000-07:00

Today she will have the 'umbrella' surgery. This is a device that will be placed in the vessel leading to her heart. It is designed to catch any large clots and keep them from entering her heart and lungs. Chunks large enough to be caught by this inline filter will dissolve by the flow of blood past it. Pieces small enough to get through are not big enough to be of major concern.
This is a replacement for the blood thinners she was on. Since she can no longer have blood thinners, the potential for her throwing clots is greater. This device will keep a piece of a broken off clot from reaching vital organs.
She will have another chest x-ray today. Also, a visitation from Park View evaluation staff. The evaluation is to determine what her needs will be at Park View for rehabilitation therapy. Physical, occupational and speak are the areas they will be focusing one. Denise's left side, specifically her arm, is considerably weaker and less coordinated than her right.
Finally, we hope to move out of ICU to 'the floor' where she can have more visitors and freedom.

Iowa City Donor status

2010-04-13T05:49:00.000-07:00

I heard from Iowa City. They are not accepting me as a donor. Two reasons, first I have cyst on one of my kidneys. Nothing they are too worried about, but they won't leave me with the defective kidney, nor give it to Denise. Secondly, I have plak buildup in the arteries going to my kidneys. This is an early warning sign of hardening of the arteries. So a diet change is pending for Jim...
If any of you are considering being a kideny donor for Denise. The first step is being blood type O. (Denise is O positive, she can receive a kidney for either O+ or O-).

Monday Afternoon

2010-04-12T15:34:00.000-07:00

Denise went to dialysis this afternoon. Her blood pressure spiked up again. 224/116, so they have adjusted her thresholds for when to give her blood pressure medicine. They were giving her doses of the meds when her blood pressure rose over 175 and now they give it to her when it rises to 165 or over. She will stay in ICU another night or two until her blood pressure is lowered or at least under control.

She has been eating solid foods all day. From eggs and a bagel at breakfast, to chicken nuggets and some fresh fruit for lunch. She has done quite well attempting to feed herself. She fed herself the chicken nuggets and this morning drank coffee on her own. Using her right hand of course, not her left. She is still struggling with motor skills in her left arm. (Left leg is working almost just as well as the right).

We found out today that surgery for the 'umbrella' is scheduled for sometime tomorrow. Basically what the 'umbrella' is, is a catcher of blood clots. It will be inserted into a main artery by her heart. This way, blood thinners are not needed and blood clots will be caught by the umbrella and won't clog up her dialysis port and other blood clot dangers. The body will naturally dissolve those blood clots that get caught in it.

A social worker and a therapist from Park View will come by the ICU tomorrow to evaluate her and see when and if she can be transferred into their care. At Park View they will begin physical therapy and occupational therapy. She will slowly begin to get stronger. In the physical sense, she will be able to move her limbs better and they will work with her on walking again. They will also work with her on her speech, eating, and swallowing. This evaluation is to take place at approximately 11:00am.

Monday Morning

2010-04-12T07:10:00.000-07:00

We got here this morning and Physical Therapy was in the room. They were comparing her left side strength against her right side. Then they had her walk with assistance. She was wobbly, but managed 20 or 30 feet before wanting to return to the chair. That little exercise tired her considerably. She had trouble focusing on the next two little tests.
Breakfast arrived, no orange juice. So we asked RN J for some Orange Juice. A few seconds later Denise had her OJ. Thank you J. Amber is now feeding her scrambled eggs, a bagel and OJ.
Had a quick conversation with Dr. Z. He advised us that she is completely off of the IV meds, so this afternoon we should be moving to the general floor. Her blood pressure is still a struggle. Last night when we left it was 116, this morning it was 164 before PT.
Today we will have to make arrangements for the Rehabilitation Hospital. Hopefully it will be the Harmony House, which is closer to home.

After the CT

2010-04-11T09:33:00.000-07:00

The CT is much cleaner. The shift in her brain has returned to about 5mm of offset. This is about half of the original displacement.
When she is awake, she is aware and responsive. She tires very easily, so conversations are only a few minutes.
They removed the drain tube and inner cranial pressure monitor. She now has a fresh bandage on her head. Dr. Z said her incision was healing nicely and her hair was already starting to grow back. The plan today is to get her to eat more solid foods, wean her off of the IV meds and get her up for a quick walk.
She is still quite restless, constantly moving and shifting her position.
Tomorrow we will talk with a disposition specialist. They will want Denise to go to a Rehabilitation Hospital for a week or two. There they will help will therapy and exercise. Denise's left side is still weaker than her right. She will also require 24x7 monitoring and assistance for the next couple of weeks.
For example, if she gets up in the middle of the night to go the bathroom, someone needs to be aware to assist if needed. Dr. Z referred to today as Graduation Day, they day should should graduate from ICU to a regular room on the floor.
More later, stayed tuned.

Sunday CT Scan

2010-04-11T08:44:00.000-07:00

Denise very awake this morning. Actually had a conversation with her. She tired quickly, but remembered people and conversations from yesterday.
They are taking her for the post craniotomy CT this morning. We have been waiting for this. The CT should show us if the problem have been addressed. Her blood pressure was good and not bouncing as much as it had the past couple of days.
Will post when the results of the CT are made available.

Saturday Afternoon

2010-04-10T15:36:00.000-07:00

Another round of dialysis today. Her blood pressure is still higher than we would like. Dr. Z (The Neurologist) is not as concerned with it, likes that her brain is getting plenty of blood and oxygen. They are monitoring her blood pressure closely though.
Many friends and family have called and come by the hospital today. We appreciate and enjoy each visit and call.
Tomorrow they will do the post surgery CT. This will tell us if the brain has recentered itself. Also it will let them confirm that the bleed has been resolved.
Today is 'solid' food. That doesn't mean steak, but pudding, sherbert, ice chips, etc.
She did talk in sentences today. Remembered things from previous visits today. She is still drifting in and out of sleep. She gets tired easy and falls asleep while you are talking to her. But the staff are very positive about her progress and prognosis.

Allen Hospital - After dialysis

2010-04-10T09:39:00.000-07:00

Hello friends,
On Wednesday, April 7th. I spent the day at Iowa City Hospitals. This was the full day of donor tests, blood workups, psychological interview, physical, ekg, cat scan with contrast, etc. These tests are to determine if I am physically healthy enough to undergo donor transplant surgery.
Blood work was first and all there looks good. Clotting potential, cholesterol, sugar, etc. were all acceptable. Pysch evaluation, donor education were next. Ekg and chest extra before lunch. Then a full physical and finished the day with a CT. That CT with contrast was a rush.

Denise had gone along to support and keep me company. She was not feeling very well the whole day. So spent most of the time in the various waiting rooms. She had a very bad headache, so sat with her head in her hands trying to remain quiet and inactive. She had been told that her high blood pressure was a strong contributor to these headaches. Her blood pressure on Dialysis days is usually between 160 and 180.
Since she is usually a Mon, Wed. Fri dialysis patient, she had bumped her Wednesday appointment to Thursday so she could join me in Iowa City on Wednesday.
Wednesday evening when we got home she crashed on the couch and relaxed. Her dialysis appointment was at 6am on Thursday. She was up and out of the house before I got up for work Thursday morning. Around 11:20 Thursday, the Dialysis Center called me. I was anticipating that she didn't feel well enough to drive home and wanted a ride. No, the Dialysis Nurse was informing me that they had called an ambulance and were going to transport her to Allen Hospital. She had become lethargic and her blood pressure was very high.
When I got to the Dialysis center, the ambulance was loading her onto the cart. She did not react when she saw me. She was not saying anything and looked very confused. A quick trip to Allen and a visit with admissions office put us in her room at 12:30. She was acting like a person who was in a very deep sleep and didn't want to wake up. You had to nudge her and ask her simple questions in order to elicit a response.
The staff advised that she would be getting a chest xray and a cat scan. Family members were called and notified of the events. As family started arriving, the nurses took her to x-ray and CT. After 20 mins or so, she was returned from radiology. They did not report on the X-Ray, but did say that the CT had revealed something. They would be moving Denise to ICU-West very shortly. In ICU they could give Denise medications through her IV. A neurologist was called in to review the results of the CT. Her Nephrologist was also consulted with. After a couple of hours, we spoke with the Neurosurgeon, Dr. Z. He wanted to do a MRA or CTA, but needed consult with Dr. K the Nephrologist first. The earlier CT was showing a pool of blood (Hematoma) on the right front quadrant of her brain. What Dr. Z didn't know was if there was an aneurysm hiding behind the hematoma. Allen is not equipped to handle aneursyms, so if that was the situation, she would have to be transported to Iowa City Hospitals. The MRA or CTA should be able to tell us if an aneurysm existed. Either way, surgery was most likely going to be needed before the end of the day.
Late afternoon on Thursday she was taken for a CTA (Cat Scan to map Arterial vessels.). The CTA indicated that no aneurysm was present. The most likely cause of the hematoma was a combination of her high blood pressure (218/113) and the blood thinners/anti-coagulants. Dr. Z explained that occasionally people with high blood pressure will develop inner cranial bleeds. However, people normally clot and the bleeding naturally stops. Since Denise was on Cumidin (anti-coagulant), her leak did not clot. She now had a 5mm thick pool of blood above her right eye, extending back to her ear. The pool was pushing her brain 7 to 8 mm to the left. This pressure on her brain is why she was so groggy and was beginning to effect motor skills on the left side of her body.
After a long discussion, surgery at Allen as consented to and scheduled. We had hoped that Surgery would begin at 6 PM. Since Denise had been been on 'blood thinners' for so long, they had to 'thicken' (make the blood more capable of clotting) her blood. It took 9 bags of PPFP to get her INR to 1.3. They would hang a bag, let it drain, then do a blood test to see if the INR was acceptable. This went on until 12:30 AM Friday morning. Each bag and test cycle had token 45 to 50 minutes complete.
At 1am they started the Craniotomy. They estimated 1.5 to 2 hours. Longer was better, it meant that they were finding and cleaning the problem areas.
At 3 am we were notified that Denise was in recovery and the she was doing well. At 4 they would move her back to ICU.
Dr Z later reported that he felt very positive about the surgery. He felt he had gotten 95% of the pooled blood. No obvious ruptures or leaks remained. He felt that taking her off of the Cumidin and adding the PPFP had actually helped to start the bodies own healing process. Essentially, all he had to do was the cleanup. Now we had to wait and see if there would be any long term effects from the inter-cranial pressure. Motor skills and weakness were the things to check.
At this point, friends and family started to go home. All were tired and baths were needed. Later Friday morning after a quick shower and change of clothes I returned to the hospital. Denise was still disoriented and very groggy. Friends and family trickled in and out all day.
On Friday they brought in a portable dialysis machine. They had put a significant amount of fluids on her the evening before. They wanted to get that fluid back off and transfuse a couple of units of blood as well. Denise was on the dialysis machine from 1 to 5 pm. Her blood pressure was still a little higher than we owuld have liked, but the Nurses and Doctors were monitoring it closely. She was still sedated as she was intubated for oxygen saturation.
Early Friday evening, Amber and Grandma arrived. We have been moved from ICU-West to ICU, so it took them a bit to find us.
Denise was not much more responsive, so all said their good-byes and called it a night. Many of us hadn't had consecutive hours of sleep since the ordeal began. We all went home for much needed rest.
Back to the hospital first thing Saturday morning. Denise is doing better. She actually put a couple of full sentences together. They were able to spoon feed her some water and apple juice as part of a swallowing test. Denise stated that she didn't like the apple juice as it was nasty. Kim came to visit, Denise recognized and smiled at her. Denise's blood pressure is still higher than we would like, they are adjusting her medication accordingly. Dr. Z. reported that he is very pleased with her progress.

Phase 2 - Kidney Donor

2010-03-19T18:44:00.000-07:00

In February, Iowa City hospitals put my blood and Denise's in a petre dish together. The object is to see if Denise's blood has built up antibodies to mine. Apparently after extended periods of cohabitation, people build up anti-bodies to the other persons germs. If Denise has too many anitbodies, then the chances that her body would reject my kidney are much greater.
The results of that test were negative. Meaning that her blood had only a minor reaction to mine (Guess she likes me more than I thought).

With that test out of the way, Iowa City wants me to come down for a full days worth of test and pre-donor screening work up. Essentailly, determine if I am healthy enough to with stand transplant surgery. Make sure that I can actually do without a kidney. Verify that I do not have any infectous diseases. These sort of things. That day of testing is April 7th, 2010.

Once they have the results from the tests, then we can begin to set timelines for the pre transplant and transplant activities.

Will let you know more as we learn it.

As always, thank you for your support.

Call from Iowa City Kidney Transplant Team

2009-11-25T13:02:00.000-08:00

Today Denise got the call. Iowa City HAS accepted her into the Kidney Transplant program. Iowa City has placed Denise on the national transplant list. Iowa City is also sending a donor packet to me. This would be step two for us. I get to go through testing to determine if my kidney is compatible for her. If so (step 3), start planning the procedure.
So Happy Thanksgiving news! Looks like we have even more to be thankful for. Thank you to all for your thoughts and prayers.

Fistula clotted shut - repair surgery

2009-11-25T12:58:00.000-08:00

Yesterday (Tuesday) Denise had an outpatient surgery to unplug her fistula. Dialysis has not been able to use the fistula, because it did not flow correctly. The short version is, her veins are too small and the vein had clotted shut. They were unable to open it. So they are now considering what to do next.
Re-do the fistula. Forget this fistula and create another fistula, probably up in her shoulder where the veins and arteries are larger.
Not the outcome we hoped for.

Post first visit and University of Iowa Hospital

2009-11-12T16:01:00.000-08:00

Well Tuesday's visit was a good visit. We are trying not to get our hopes up, but Iowa City Doctors did not immediately dismiss us from Kidney Transplant consideration because of the FSGS.
The Surgeon and Nephrologist both agreed that having FSGS added an additional level of concern for a prospective transplant, but that it did not automatically disqualify us. The Nephrologist stated that there were different forms of FSGS and that each had different onset behaviors. The quick onset of Denise's FSGS was another area of concern. However, they have had some success with intense plasmapheresis just prior to the transplant. Having a live donor was a key benefit to this approach. The plasmapheresis and the live donor transplant can be closely scheduled. This allows them an opportunity try an siphon as much of the FSGS out of her system before transplanting a healthy kidney. Additionally, Live Donor kidney transplants have a higher success rate and an increased longevity when compared to donated organs from recently deceased donors.
They will have to study her records and review the tests they performed. We should know something in a couple of weeks. Stay tuned, more to come.

Second opinion

2009-10-03T15:34:00.000-07:00

The Dialysis unit here in Waterloo called Mayo to see where Denise stood with her transplant status. Mayo said that until Denise's Albumin was in the 3's (Currently high 1's) or a protocol for dealing with FSGS was determined, that Denise was still on a hold list. The Waterloo DaVita dialysis center pushed the subject a little further, Mayo responded by stating that Denise was free to get a second opinion. With that, the Dialysis center contacted Iowa City Hospitals. Iowa City is interested in reveiwing Denise's case and wants us to come down for consultation and prelimenary testing in November.
So, guess we are not done yet.
Thank you for your thoughts and prayers.
Jim

After the prequalifying week...

2009-05-09T06:05:00.000-07:00

I did not call in yesterday. Lost track of time playing catchup around the house. First lawn mowing of the season and all.

Did find a couple of interesting articles on FSGS.

A nice description and overview of FSGS:
http://www.nephcure.org/fsgs-facts.htm

A clinical research progress review...
http://www.renalandurologynews.com/Diagnosing-Treating-FSGS-An-Update/article/22272/

Will update when we know more.

2009-05-07T19:34:00.000-07:00

So we finished off the day with a review consult. the Stress EKG and the ultrasound look good. The Colonoscopy had a couple of little things. More pills and stuff. Now mostly a waiting game for two weeks until the team reconvenes for the next batch of cases to review.
I will find out tomorrow if my initial blood tests are enough of a match to proceed.
Until we know more...
Thank you to all for your support.

Day 4 - Pre Transplant screening...

2009-05-07T08:24:00.000-07:00

Trying to remember how we finished yesterday... OH, she got some shots. They want her to be fully immunized prior to any surgery's.

Just before the shots we visited with the actual Transplant Doctor. Felt like an interview. Guess they are trying to weed out the needy from the not-so-needy or not-so-needy-yet. The transplant committee meets every two weeks to review candidates. They had meet earlier on Wednesday, so it will be two weeks before we know if she has been accepted for the procedure. My blood compatibility tests will be back tomorrow (Friday).

Not sure how we did there. Surgeons have ego's, I have a hard time not poking at ego's that are inflated larger than mine...

Back to the Quality Inn so she could drink chalk...

This morning was the colonoscopy and a blood draw to check her INR. Next we will go back to the Nephrologist for a summation of this weeks tests and meetings. Will find out then if there is more to do tomorrow...

Until then.

Day 3 - Pre Transplant procedures

2009-05-06T07:55:00.000-07:00

So yesterday she finished off with: A class and video on transplant care. How long the surgery lasts, recovery, check up, expectations, etc. Then visits with a Transplant Coordinator, a Social Worker and a transplant financial counselor.

The Transplant Coordinator scheduled a Wednesday morning blood draw/compatibility tests for me. Now I too am in the Mayo system.

This morning she has dialysis. After getting her situated, I went down and had my blood drawn for the tests. 5 little vials. We will know Friday afternoon if I am at least a blood compatible match. We also volunteered to be part of a domino surgery. E.G. If I am not compatible for Denise, but do match someone else. And that someone else has someone who IS compatible with Denise...

Next she has an ultrasound. Then another appointment this afternoon. Will update later...

Day 2 - Transplant Pre-screening week

2009-05-05T07:18:00.000-07:00

Started this morning with a stress test EKG. Silly me, thought that meant a treadmill. Nope, an IV of chemicals made her heart race. Guess she passed. She got up to 144, (Isn't that speeding in most places?).

Off to Transplant class next, I get to attend too.

Oh, yesterday she got to talk to a dietitian. How the menu is going to change after the transplant. No alcohol, minimal caffeine, eggs, no potatoes... Can't have too much lettuce or other greens. Tofu here we come.

Stay tuned...

Pre Transplant screening week

2009-05-04T14:49:00.000-07:00

We got our complete schedule this morning. We (Denise) is gonna be busy this week, lots of appointments, tests, consults and meetings.
We started the day with a 20 vial blood draw. Going to test for everything, plus whatever else they can think of.

From there we talked with Dr.'s, we reviewed her medical history. How and when did this start, how did we get to here (Transplant surgery)? Hey while we are talking, lets order up a couple of urine tests, etc.

After lunch we had an EKG. Then visited with another Doctor to review her current medications, add a few new ones (High Cholesterol, calcium).

Ending this afternoon with Dialysis. She is an old pro at this Dialysis thing now. Knows the routine and lingo. Some of the Nurses remembered her from her December and January visits...
Tuesday, Wednesday and Thursday are all equally busy. Will post more as it happens.
I may get my initial blood tests on Thursday. Guess I better start studying...

Wednesday - Ultrasound and Dialysis

2009-01-01T06:27:00.000-08:00

So into Mayo at 1 for an Ultrasound. The purpose is to check her arms to determine which arm will be better suited for a fistula. Fistula's are ugly; ugly in appearance and ugly in practice. That fact that they are taking about fistulas means dialysis is a long term solution to her problem. Read a nice page about fistulas here. For the less queasy, do a Google image search for vistulas.
It was after 3, when we went over to the dialysis ward and she had her last 3 hour session at the Rochester ward. Starting this Friday, she will be a regular at the Dialysis ward on Ridgeway. She has a 10:00 am appointment, so they will be ready for her.
Drive through at Mickey D's for supper. On the road by 7:30, home before 10.

We wish all of you a Happy New Year! Thank you for your kinds words, actions and prayers, they have meant so much to us.

Education completed

2008-12-30T09:56:00.000-08:00

Met with a nice lady this morning who explained dialysis and related options. Pros and cons of home dialysis vs in-center dialysis, etc.
The from the Subway level training facility to the 19Th floor. From the top floor of the building, the view of Rochester is quite nice... She met with the dietitian. Dietitians are depressing, no matter what your menu looks like, they nicely tell you how badly you are really eating. That is all for today, tomorrow a met with the Doctor and another dialysis session.
Here are some words for you: John Hardy Bar-B-Que. Yes, I am sure that the dietitian would have a fit, but man, that was some serious pulled pork. 6 levels of BBQ sauce, yes I had the really bad boy sauce. I will pay for that later. She had the 1/4 chicken, with mild BBQ sauce. Both of us came away happy. Until tomorrow.

Tuesday - learning and training

2008-12-30T05:26:00.000-08:00

We start today with patient training on dialysis. We follow that with a consultation visit to the dietitian. That is all that is scheduled for today.
Will update later, reporting how that went.

Monday 29th, out with the old, in with the new.

2008-12-30T05:19:00.000-08:00

Blood work at 8:20, then over to St. Marys for equipment change. They put her to sleep, took the temporary lines out of her neck and installed the interim port in her chest. We got to St. Mary's early, but they worked her in right away. She is stiff and both of the locations are tender...
Off to brunch before dialysis that afternoon. Just grabbed some food at the cafeteria, not all bad.
Got a room for the next two nights. Different place, two rooms. 'living room' and a bedroom with a privacy door between, couple of recliners a couch. This would be OK for a week or two kind-of-thing.
Back to Mayo at 2:30 for Dialysis. She passed out this time. They took too much off or took it off too fast. Either way, it upset her a little. Understandable. When she was done, they had taken of 5.5 pounds.
Drove around trying to find Olive Garden, it is not an obvious location or address. Nice supper, then back to the room for TV and relaxing...

Back to Rochester

2008-12-29T03:42:00.000-08:00

We are headed back to Rochester this morning. Today, they
will be putting the interim dialysis port in her chest, removing the
temporary port (lines) from her neck. She will also go through her
second full blown dialysis session.
Tomorrow we are scheduled for Dialysis class and a doctor visit. On
Wednesday another Dialysis session and a sonogram (?) to locate the
future home of her more permanent arm port.
Looks like she will be on Dialysis for some time. The good news is that
can be done in the Waterloo area. The bad news is, this seems to be
their answer.
More to follow..

Post Plasma Exchange Dr. Visit

2008-12-22T13:02:00.000-08:00

Welcome fans to another entry.
Denise is just finishing up another round of fluid removal. They are again using the Dialysis machines to extract 3000 milliliters (Is that 3 liters?) of excess fluid. They admit that this is a temporary way of easing her discomfort. However, they need to get her blood pressure down. The excess fluid is making her whole system work too hard. Her average blood pressure is 180/100 and the normal BP is 120/80. Sow while she likes the 6.6 pounds of fluids each of these sessions removes, we are not fixing anything. The verdict is still out if the plasmapheresis has helped or not. Will know more next Friday when she has another apt.
For now, we are going home and doing Christmas.

Post Session V - Cherry Pie

2008-12-21T17:54:00.000-08:00

Cody and Hayli went with us to the plasmapheresis session. One of the Nurses had given me a hard time about bringing a McD's cup in on Saturday. She had mumbled something about Cherry Pies... So, 6 Cherry Pies later, the Nurses were all extra happy. Tis the season and happy nurses make for a happy visit...
The Exchange went smoothly. Cody and Hayli watched with interest of course.
Tomorrow the Blood Work and doctors visit to see if this has helped.
The Eagle didn't start today. Guess the negative 10 was more than she wants to handle. Cody and I have tried a few times, but now the battery is pretty weak. There is a service station next door, so tomorrow, will need to work in a jump start from them along with the other regularly scheduled activities.
Stay tuned, more to follow.

Sunday Session V is nearing.

2008-12-21T07:08:00.000-08:00

Yesterday's session went as smoothly and Friday's. In and out in less than two hours. Cody called while we were there. They had successfully snuck into our motel room and were waiting.
Since Mayo is deserted on the weekends, we had parked in the covered drive through drop off zone. Others were there as well and we had been told we could do this if there was room. The NICE thing about the area is that it is heated. Heated concrete drive and sidewalks. The snow and slush melts away from the drive area, keeping it open and free for people to move about. It also means our very snow covered car was clean as a whistle after two hours. Not for long, back to the motel...
Denise was surprised and happy to see the kids. So a card game and other family activities followed. A little time around the pool, then a tour of Rochester looking for a Taco Bell.
Today is the last Plasmapheresis session. Tomorrow we will repeat Friday's blood work and UA routine, with the follow up visit to the Doctors office. Hopefully the numbers will improve. A whole long list of options faces us is this has NOT helped. An equally interesting list if this is helping. For now, I am getting a ahead of myself. Until next time. Thank you for checking in.

Saturday - Day IV Plasmapheresis

2008-12-20T09:11:00.000-08:00

Last nights Dialysis went well. She had a headache afterwards and some minor cramping. All to be expected they tell us.
So a lazy day today. Mayo is not officially open on the Weekends, only specific labs and clinics. Our appointment is at 1 pm. Should be quick, only a few beds and nurses.
She doesn't know it, but Cody and Hayli are on their way up. They should be in the room when we get back from the appt. We will see how that goes.

Until next time... In the meantime, here are a couple of links to information about Plasmapheresis and Plasma Exchange

Session III complete and a doctor visit

2008-12-19T14:59:00.000-08:00

At Mayo early today. Blood work and UA at 9:00a, then PlasmaExchange at 1. Today's session went well. They were in and out in record time. Cheryl, the nurse, said that her BP was better today than it has been the past two days. Also, she had gone right through the 12 bottles of Albumin (5% Human). Her hands are swollen and puffy and the weight seems the same. She did get up to go to the bathroom four times last night. So that seems better.
In to see the doctor at 4. Doc is not liking the numbers from this morning blood work. Creatnin is still too high and climbing
. Albumin and prograf numbers are looking better. The edema is still very evident and her average Blood Pressure number is too high. So, Doc made a call, and now (right NOW) we are going to Dialysis. They want to take 300 (somethings) off of her tonight and may take another 300 off on Monday.
Oh yeah, we are staying through Monday. Plasma Exchange on Sat and Sun. A repeat of today on Monday. Blood, Plasmapheresis, doctor visit, dialysis...
Will post more later.
I have to take the shuttle back to the hotel to grab the car, because we will be here longer than the shuttles run tonight. No shuttles on the weekend either...
More play-by-play to follow stay tuned...

Session II complete

2008-12-18T13:17:00.000-08:00

Just finished the second session of Plasma Exchange. It went a little smoother, she still had a couple of numb spells and a shiver episode. They added the appropriate chemicals to her Albumin and all was well.
She feels not too bad right now. No change in appearance, maybe even a little extra fluid... Too soon to tell?
Tomorrow will be busy... 9:00 AM blood tests, 1 pm PlasmaExchange 4 PM Dr office visit.
The Plasmapheresis clinic can not yet tell us if we are going to be able to get in on Saturday and Sunday or if they are kicking us out for the weekend and we will have to come back next week... Won't know until after check out time tomorrow.
At least the snow forecast has changed and the drive home should not be as treacherous as it could have been.

Plasma Exchange session I completed

2008-12-17T15:20:00.000-08:00

We just got back from the first Plasmapheresis session. It went well, she was 'back there' for less than two hours. But there was the waiting room time before and after. Plus a visit to the Pharmacy. Riding the shuttle adds time on both ends of the appointment...
She experienced a little tingling during the process. Apparently this tells the nurses something, because they gave her some medicine to counteract the tingling...
Anyway, it was not as bad as she had thought it might be. Tomorrow's session will come with much less anticipation.
Til then...

Wednesday pre Plasma Exchange

2008-12-17T06:27:00.000-08:00

Up at 8, it is cold outside with only an inch of snow. Our appointment is at 1, so will catch the 12:15 shuttle to the Clinic. Slept pretty well with the thing in her neck. Did not want or take any Tylenol. So now waiting for the bus...

Post Line install

2008-12-16T18:14:00.000-08:00

So three hours of busy waiting room later, she has the line installed. It is on her right-side, in the jugular. Ick! But she is happy, 'cause this is the 'temporary' location. We were back in the motel room by 12:30. The line is uncomfortable for her and she has actually asked for Tylenol... The loop of plastic tubing sticking up, filled with blood is a little awkward when moving around. As a result, she has been keeping pretty still. Keeping pretty still all afternoon tends to induce a lot of sleeping... :)
Tomorrow is her first Plasmapheresis session. It is scheculed for 1PM... Will post an update after that...
Snow is still falling, the temp is still low. I thought it could get to cold to snow. I would have sworn we were there...

Getting the lines in...

2008-12-16T05:25:00.000-08:00

7:30 AM CST, we are getting ready to go to St. Mary's to undergo the outpatient procedure of getting her lines put in. These lines will be used for the Plasmapheresis and possibly for dialysis.
We do not know if she is getting temporary or long term lines. Temporary lines get installed in her neck, in the jugular. Long term lines go in the chest. Sounds like fun, ehh?
That is all that is on the plan for today. It is going to be COLD in Rochester today, so will stay inside. The high is to be in the single digits. Four inches of snow, more forecast for northern Iowa. So the bulk of the snow will go south of us. Oh well, we are taking the shuttle and leaving the car at the motel...

Mayo - Round two

2008-12-15T11:31:00.000-08:00

Welcome back Sports Fans to the daily updates from Rochester.

So we got up at 5 AM to be on the road by 6, just in case the Winter weather had arrived ahead of schedule. At Mayo by 8:30, signed in ready to go. The nice nurse picked her up and took her back to the room, where the Plasmapheresis was to take place. I gathered my things and settled down for a three hour stint of emailing and work. Half an hour or forty-five minutes later they returned.
After some discussion it turns out that we should not have taken some of the medications on the list. So they are unable to do the procedure for at least twenty four hours. So the rest of Monday is shot for any medical procedures. They also had determined that she would be a hard stick and that it would be much better to go ahead and get the 'lines' put in as soon as possible. We already knew she was a hard stick, but that is beside the point. So the out patient procedure is scheduled for Tuesday 9:00 AM.
They do not want to perform the Plasmapheresis procedure on her after the 'surgery', so will need to wait a day. This means it will be Wednesday before we can get the first of the five Plasma Exchange sessions started.
They still want to do the five sessions, so looks like we will be here through Sunday.
In the meantime, we have checked into lodging just 5 minutes from the Clinic.
Have nestled down for the night to avoid the bitter cold that is outside.
Best to all, stay tuned for more play-by-play...