Thursday, February 28, 2013

Balloon Angioplasty Number 2

My last update on Mom was on February 16. So does that mean there haven't been any issues? Well, no. Loyal readers will know we usually can't go a week without some sort of issue.

At Mom's dialysis session on Friday, February 22, one of the doctors from Plano Vascular Center visited the dialysis clinic. He was the doctor who replaced Mom’s permacath when she had the massive bleeding incident in October. He periodically visits the dialysis clinics in the area to check on the patients’ catheters and fistulas. He had reviewed Mom’s file and said he thinks she needs to have another procedure like the one she had in December where a balloon-like device is temporarily inserted into the fistula. He said it’s not urgent. Mom scheduled that for Tuesday, February 26.

At some point after this doctor left, and before her dialysis session was done, the dialysis machine started clogging up. They had to stop dialysis early because they could not get the clog cleared up. The tech tried to do something with the needles in the fistula, but at some point he said he couldn’t get it right without hurting Mom a lot more.

Mom had the balloon procedure on Tuesday of this week, and it went fine. (It's called balloon angioplasty. Here's a good article about it that isn't full of medical terminology: This one was done fairly close to her right elbow. The procedure is done with a local anesthetic. The doctor threads a catheter with a balloon on the end into the vein or artery, and then slowly inflates the balloon once it's in the right spot. This widening of the blood vessel not only increases the blood flow through the fistula, but it makes it easier for the tech to get a needle into it. The doctor indicated to Mom that this is a fairly common procedure that is needed to maintain fistulas for dialysis, so she’ll likely need it again. She's been to Plano Vascular Center so many times it must be like going to Cheers (where everybody knows your name . . .)

Generally speaking, Mom is doing fair. Her hemoglobin was recently up to 9.7, which is as high as it's been since last summer, but she is still frequently tired and has a hard time staying warm, especially after a dialysis session. We keep wondering when things are going to become "stable" with her dialysis. Hopefully this isn't it.

Sunday, February 24, 2013

Article Review (1973) - Amyloid Nephropathy of Ostertag with Special Reference to Renal Glomerular Giant Cells

Today's post will be my first review/summary of a journal article that is related in some way to fibrinogen amyloidosis. To make these types of posts easier to find in the future I'll be tagging them with "Article Review" and I'll also have links to them in the list of articles on the Resources page. The format of these reviews will certainly evolve over time, and some articles will need more discussion than others. Hopefully I can make them somewhat informative and not too boring. So let's get started and see what happens.

TitleAmyloid Nephropathy of Ostertag with Special Reference to Renal Glomerular Giant Cells

Authors: Sharon Whelan Weiss, MD and David L. Page, MD (Both from the Department of Pathology, The Johns Hopkins University School of Medicine and Hospital, Baltimore, MD, USA)

JournalAmerican Journal of Pathology (1973, September)

Here's a link to the PDF of this article, if you'd like to follow along:

This article is the oldest one I have related to fibrinogen amyloidosis, but you won't find the word "fibrinogen" anywhere in the article. So this article is part of what I would consider the history of fibrinogen amyloidosis, before the first fibrinogen mutation was identified in the early 1990s. Here is the abstract:

The pathology of an unusual form of nonneuropathic familial amyloidosis is presented. The disease, occurring in two sisters, is similar to a form of familial amyloidosis described by Ostertag in 1950 and is characterized by progressive renal failure and an autosomal dominant mode of inheritance. Widespread vascular amyloidosis and dense renal glomerular amyloid deposits characterize the disease pathologically. Renal interstitial foam cells and glomerular giant cells were found in the kidneys of one sister. The giant cells, probably of macrophage origin, contain amyloid fibrils within poorly formed non-membrane-bounded cytoplasmic vacuoles. Transitions to well-formed membrane-bounded cytoplasmic vacuoles with nonfibrillar material were also present. It is suggested that these cells function to degrade and resorb amyloid, and that as amyloid is changed to a nonfibrillar state, well-defined membranes can form around the degraded material (Am J Pathol 72:447-460, 1973).

Before jumping into the article, let's start by defining some of the terminology used in the title and in the abstract. (I'm not going to define all the medical terms here because there are many terms I still don't understand even after looking up the definition.)

Autosomal Dominant: A method of inheritance where an abnormal gene from only one parent is necessary to inherit the condition.
Glomerular: Having to do with the glomerulus, which is part of the cortex (outer part) of the kidney. Glomerular Filtration Rate (GFR) is an important indicator of kidney function.
Nephropathy: An abnormal state of the kidney.
Ostertag: Doctor in Germany who documented familial amyloidosis affecting the kidneys in 1950.
Renal: Having to do with the kidneys.

The article begins with this sentence: "The familial amyloidoses are unusual forms of systemic amyloidosis and may be divided into neuropathic and nonneuropathic forms." So we know at the time this article was written (1973) that familial forms of amyloidosis had been described and divided into two categories, neuropathic (dealing with the nervous system) and nonneuropathic. But based on the earliest publication dates of the articles listed on the Mutations in Hereditary Amyloidosis web site, it looks like the first genetic mutations for familial amyloidosis were identified in the early 1980s. So although some familial forms had been described, the underlying genetic causes had not been identified.

The first paragraph goes on to say two sisters presented with "an unusual form of nonneuropathic familial amyloidosis of a type reported only once before." There is a reference to an article from 1950 authored by a German doctor named Berthold Ostertag, whose name will come up again. So we're dealing with something that was quite rare in 1973, having only been reported in the medical literature once before in 1950.

The article then has a paragraph with a technical description of the laboratory methods used to analyze tissue samples. Yes, Congo red staining is mentioned. Each sister's case is then described.

Sister #1

The first sister 
was admitted to a US hospital in October of 1968 at the age of 47 for high blood pressure and persistent edema. At this hospital admission she also had proteinuria as well as very elevated creatinine and BUN levels. She was released from the hospital after two weeks, but was readmitted two months later for high blood pressure and pulmonary edema (fluid on the lungs). Her BUN level was higher and she still had proteinuria. The pulmonary edema responded to therapy, but she stopped producing urine and started peritoneal dialysis in the hospital. Despite the dialysis she continued to decline and died after just under two months in the hospital.

Here is some interesting family history on this patient. Her father and her daughter both died of renal disease, and the ages of 42 and 13, respectively. (I know from reading another article that there is a rare fibrinogen mutation that can produce symptoms at a very young age.)

The autopsy showed both kidneys were reduced in size, with extensive amyloid deposits (detailed in the article). Amyloid deposits were found to a lesser extent in other organs.

Sister #2

The other sister was 52 years old in 1971. Two of her three children have normal renal function, and one child has started to exhibit proteinuria and hematuria (blood in the urine). She (sister #2) started having minimal proteinuria in 1949, proceeding to heavy proteinuria in 1952 (age ~33). 16 years later, in 1968, her creatinine and BUN levels were both elevated, and things gradually got worse over the next two years, including high blood pressure. In July of 1971 she received a kidney transplant and one of her native kidneys was removed at the same time. She died 16 days after the kidney transplant due to Klebsiella pneumonia.

The autopsy findings on sister #2 were similar to those of sister #1. The article also describes in detail the findings via electron microscopy of the native kidney that was removed during the kidney transplant. Several pictures of slides are included as well. You need to be familiar with the internal structure of the kidney to fully understand that section. (I am not.)


The discussion section of the article compares the case of these two sisters to the patients described by Ostertag in 1950. Ostertag reported on two brothers with similar symptoms who died in their thirties, and this article mentions that based on the involvement of members in three generations of that family it has been suggested that the mode of inheritance is autosomal dominant. The case of these two sisters is similar in terms of symptoms and probable mode of inheritance, and then the article goes into some detail on the differences between the two cases, which may or may not be significant.

The last section of the article has the heading "Glomerular Giant Cells" and goes into quite a bit of detail that's way over my head. As mentioned above, I do know the glomerulus is part of the cortex (outer part) of the kidney, and "Glomerular" is the "G" in GFR.


Before concluding this post I want to mention two other articles from the 1970s that I do not have, but based on their titles and abstracts they can help shed some light on where things stood with this disease at that time. They are:

TitleAmyloid Nephropathy of Ostertag: Report of a kindred

Journal: Birth Defects (1974)

Abstract: This report describes a kindred with an unusual form of nonneuropathic familial amyloidosis. The disorder is similar to that described by Ostertag in 1950. [Based on information in other articles that refer to this one, this report discusses four patients in three generations. The authors are the same as the 1973 article being reviewed in this post, so these patients are likely from the same kindred (family).]

[Update: The following article was reviewed again on 8-30-13.]

TitleFamilial renal amyloidosis: Case reports, literature review and classification

Journal: The American Journal of Medicine (1975, July)

Abstract: Three siblings (two brothers and a sister) of Polish origin, presented in late middle age with the features of the nephrotic syndrome and hypertension. Glomerular deposition of amyloid was found in all on renal biopsy. No amyloid was seen on rectal or gingival biopsy. Their mother and a maternal aunt died in middle age with a clinically similar disease. These cases are compared with other forms of hereditary amyloidosis which are briefly reviewed. The hereditary amyloidoses are classified with particular emphasis on neural and renal involvement. [Based on information in other articles that refer to this one, these siblings lived in Canada. They developed high blood pressure and kidney issues at the ages of 42, 52 and 58, and died at the ages of 49, 55 and 60.]


So we now know the medical literature on hereditary amyloidosis affecting the kidneys goes back to at least 1950 with one article, and three more articles appeared in the mid 1970s. We can't say for certain whether or not any of these patients had fibrinogen amyloidosis since there are some other familial forms that primarily affect the kidneys, such as apolipoprotein A1 and A2, and lysozyme. There are similarities to fibrinogen amyloidosis, such as the glomerular involvement, but without genetic testing on these patients or their descendants there is no way to know for certain. Since genetic testing wasn't exactly right around the corner in the mid 1970s, we'll have to wait awhile for that. But for now the common symptoms and the progression of the disease are starting to be documented, and the mode of inheritance seems to be autosomal dominant.

In the next article review we'll see what happens in the 1980s.

Wednesday, February 20, 2013

Moving forward

Now that the blog is caught up to the present day we can expect the frequency of posts to slow down a bit. Unless and until something happens regarding a kidney transplant for Mom, we'll mostly be covering the dialysis process and the almost weekly drama that seems to occur with that. Although it's tempting, I won't rename the blog "The Dialysis Diaries" since the primary focus is still on fibrinogen amyloidosis. So I'll also be writing about any family news in that area, clinical trial updates, and updates on any other patients (with permission) who want to "go public," so to speak.

One thing I plan on doing in the blog is reviewing the relevant medical journal articles I have access to, which are listed on the Resources page. I'll start with the oldest article and work my way forward. I also have some other standalone pages in the works, similar to the existing Resources and Patient Timelines pages.

Another tidbit of information I'll toss out periodically about the blog is what search terms people have used to find it. Search terms that include words such as "fibrinogen" or "amyloidosis" occur frequently, as expected. Another one that turns up frequently is "CPHPC" since I have a handful of posts dealing with that. However, a recent search term I did not expect to see was "bra and permacath." I'm sure the post covering October 26, 2012 was the match for that search term, and I would guess the person searching for "bra and permacath" was a female who recently had a permacath inserted in her chest and was looking for tips on how to wear a bra with it. Unfortunately, instead of finding some helpful hints, she read a story about someone almost bleeding to death in a dialysis chair. I'm sure that didn't help her anxiety level regarding being on dialysis. Sorry about that, whoever you are.

A new web site that may drive some traffic this way is, which is a partnership of EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) in the US. The stated purpose of this web site is "to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources." In January of this year a note was sent to the Yahoo online support group saying they were looking for stories of different types of amyloidosis for an international web site. I wrote to the contact person and offered to write up something on fibrinogen amyloidosis. What I submitted has now been published on that site, and the direct link to my story about fibrinogen amyloidosis is:

So stay tuned as our story unfolds at a little slower pace than it has so far, and we learn a little more about the history of fibrinogen amyloidosis (and its diagnosis and treatment) along the way. If you aren't already subscribed by email, it's easy to do on the right side of the page. Once you're subscribed you don't have to check the blog periodically for updates, since they will automatically be sent to you via email.

Sunday, February 17, 2013

February 2013 - Ketchup

This post picks up where the last post left off, at the beginning of February. We'll have our usual weekly dose of drama, with some sad news to report in addition to that. Will we finally catch up to the current day with this post? Let's see . . .

February 1, 2013 (Friday): They were able to use two needles in Mom’s fistula today. Hopefully that will become the norm some day and I won't even bother making a note of it.

February 5: Do you remember the potential issue with Mom's insurance I mentioned in the last post, where she was switched to a Medicare Advantage plan for 2013? She was concerned that the transplant group would not take the new insurance, but she found out they do so that was a big relief. Well, today she found out today that Dr. C, the rheumatologist she has been seeing for decades and is a very critical doctor in terms of taking care of her arthritis and getting her medicine just right, does not take Medicare Advantage. And the doctor across the hall that Dr. C refers overflow patients to doesn’t take it either. We never thought to ask whether or not any of her other doctors take Medicare Advantage. It could potentially be awful if Mom has to find another rheumatologist. Fortunately she called Aetna about it later in the day and they are going to fax a form to her to complete which will hopefully let her switch back to Medicare.

February 6: Mom’s recent labs showed good results. Almost everything is where it should be, or heading in the right direction. You know what that means, don’t you? We're due for some sort of issue.

February 8 (Friday): Mom called me from dialysis before noon today and said her permacath was badly infected and will need to be replaced or removed. She said the area is very red and it hurts whenever they touch it. They are doing dialysis right now in the fistula and they are using the largest size needles. The nephrologist is on the way to the clinic to determine whether the catheter needs to be removed or replaced. It would be so nice to get this permacath removed permanently, but given the inconsistent success they have using the fistula I won't be surprised if the nephrologist says to replace it, or better yet, remove the infected one and put a new one on the other side.

Mom drove home from dialysis and my wife Cathy took her to the Plano Vascular Center where they removed the permacath. [And there was much rejoicing!] Cathy said the red area all around the permacath was due to pus. As a result of the infection, Mom was prescribed that very expensive antibiotic again. A bottle of 28 pills would have cost her around $3600 without insurance. I think she paid $10.

February 11 (Monday): Now the sad news. You may recall back in July of 2012 when it looked like Mom would be doing peritoneal dialysis, we went to the home of someone who is currently on peritoneal dialysis so we could learn about it from the perspective of a patient. I covered that visit in the December 12, 2012 blog post, where I referred to him and his wife as GM and CM. This week I learned that GM passed away unexpectedly on Monday, February 11, at the age of 74. He had been released from the hospital the previous Wednesday after a bout with pneumonia. He seemed fine when we saw them in July, and again in November at the amyloidosis support group meeting in Dallas.

February 15: There were no issues at dialysis this week, other than a little excessive bleeding once when one of the needles was removed at the end of the session. Let's hope this streak of successes with the fistula continues so they won't even consider putting a permacath back in.

And with that, ladies and gentlemen, this blog is now caught up to the present day. Back when I published the first post on September 29, 2012 I wouldn't have guessed it would take me 61 posts to catch up. But I also wasn't expecting what has happened since September. So what happens now that we're caught up? I'll discuss that in the next post, which will be in a few days.

Tuesday, February 12, 2013

January 17 through 29, 2013 - Not enough dialysis, not enough insurance

Today's post covers the remainder of January of 2013.

January 17, 2013 (Thursday): Mom’s insurance changed from Medicare to a Medicare Advantage plan at the first of this year, and she's finding out she isn't very happy with this new plan, initially due to having to pay a copay. But the big question is whether or not the transplant group will accept this new plan.

So how did she end up on this new insurance plan? Well, she was mailed some material in October about this potential change and instead of asking people to do something if they wanted to switch to the new plan, they had to complete a bunch of paperwork if they wanted to stay with their new plan. You may recall that October 2012 was an exciting month for Mom, with a failed attempt at peritoneal dialysis, a six night stay in the hospital, and getting started on hemodialysis. Reading her mail closely wasn't at the top of her priority list, and the last thing she wanted to do was fill out a bunch more paperwork, so she ended up being put on the new plan. It's called Medicare Advantage, so shouldn't it be an advantage over Medicare alone? Sure, but it's an advantage to the insurance provider, not to the patient.

So Mom found out that she could switch back to her old plan if she acted before January 31. Eventually she learned the transplant group will take her Medicare Advantage plan, so she decided to stay with it since that was her major concern.
January 18: They had to use one needle in the fistula and one needle in the permacath today. Also, some bleeding under the skin on her right arm appeared on Thursday. Fortunately it's not nearly as bad as it was in December.

January 23: The tech had trouble with the second needle stick today, and had to start over with that one so Mom actually had three needle sticks today.

January 25 (Friday): Today was good news, bad news, worse news. The good news is that her hemoglobin is up to 9.3. The bad news is that at today's dialysis session they couldn't get either one of the needles in the fistula so they had to use just the permacath. The worse news is that Mom's blood work shows that she isn't getting enough dialysis, so they're going to increase her dialysis time from 3.5 to 4 hours each session. Unlike most dialysis patients, Mom is still producing urine so this extra half hour will make her even more uncomfortable near the end of sessions than she is now.

January 28: The tech who normally puts the needles in Mom’s fistula was not there today, and the other techs were not comfortable trying to do it so they used the permacath instead. This was also Mom’s first four-hour dialysis session and it went ok.

January 29: I finally have some good news to report, but it's for me and not for Mom. I had my annual physical today and everything was normal with my lab work. Creatinine = 1.13 (normal range is 0.70 - 1.33) and GFR = 75 (normal is over 60). So I'm still asymptomatic. I will admit to being a little more nervous about my lab results with each passing year, but at least I know it will be detected as early as possible and I do have somewhat of a plan on how to proceed.

Next up: Almost caught up!

[Minor edit 3-13-13]

Saturday, February 9, 2013

January 4 through 16, 2013 - Dry buttons

Ok, it's time to start blogging about 2013. It does feel strange to be writing about stuff that happened just last month.

January 4, 2013 (Friday): Mom has not seen the nephrologist at the dialysis clinic since before Christmas. Typically the nephrologist sees each patient weekly, so this is a little out of the norm, but I suppose some allowances should be made for the recent holiday period.

Before proceeding I need to explain what "dry weight" is. Since dialysis removes fluid from the body, it is important that they do not remove too much or too little fluid. If they don't remove enough then the excess fluid builds up in the body, causing edema. If they remove too much fluid that can lead to low blood pressure. The nephrologist determines a figure called "dry weight" for each patient, which is what the patient would weigh without any excess fluid. There are various formulas for determining a person's dry weight, so it's not an exact science and it can take a bit of trial and error to get it right. Dialysis patients are weighed before and after a dialysis session to determine exactly how much fluid has been removed, with the goal being to get them back down to their dry weight.

Mom has lost some more weight since her dry weight was initially determined, which she believes should affect her dry weight. (If she has lost body fat or muscle mass instead of simply fluid weight, I would tend to agree.) Unfortunately the patient's dry weight is part of the dialysis prescription and the nephrologist has to make those changes. Mom knew they had removed 2.3 pounds of fluid during her dialysis session in Austin on Wednesday, but the tech at her home clinic today was only going to remove one pound of fluid. She convinced him to remove two pounds after explaining how much was removed on Wednesday and that she felt fine afterwards. Hopefully she can talk to the nephrologist about her dry weight soon.

Also, her hemoglobin is still low at 7.4. I wonder if that will ever get back above 10 and stay there.

January 7: Mom saw Dr. K this morning about her fistula. (We don't need it to look like this any more.) He said the fistula itself is fine, and based on what she described to him it sounds like they didn’t hold pressure on it long enough at the end of dialysis, so it continued to bleed under the skin. He said they can start using the fistula again, which will be today. Regarding Mom’s thin blood, allergy to heparin and inability to take Coumadin, she told him that she was given vitamin K before her tonsillectomy when she was a young girl because of her thin blood, and he was surprised to learn about that. Dr. K said her fistula should be ok if her blood is indeed that thin. That was a relief to hear, and hopefully he's right. I suppose only time will tell.

When Mom went to dialysis today she told the tech what happened the last time they used the fistula, and the tech was extra careful with it, especially at the end of the session when she removed the needles and made sure the bleeding was stopped. It's nice when she gets a tech that cares and listens to the patient.

Before proceeding, it's time for yet another dialysis terminology lesson. (That's two lessons in the same post. You guys are so lucky.) Our next term is "buttonhole technique." When a fistula is used for dialysis, the needles are inserted under the skin and angled toward the vein or artery. (In Mom's case these needles are inserted in her upper arm.) This is different than simply getting a shot because the needles are larger and because they go through more skin due to the angle. The needles need to go in at such a narrow angle (almost parallel to the skin) so they can be taped down. Another thing the tech inserting the needles has to do is use a different location each time, because if a blood vessel is frequently punctured in the same general area it can get weak and fail to heal properly, possibly leading to rupture and causing massive bleeding under the skin.

According to Mom, it is really painful when they put these needles in her arm. She has a very high tolerance for pain, so if she says it hurts, it hurts. And here is where the buttonhole technique comes in. The buttonhole technique is when the exact same needle location is used repeatedly. This causes scar tissue to eventually form sort of a tunnel in the skin such that it no longer hurts when the needles are inserted. I don't fully understand why this isn't a problem for the blood vessel to have the needle in the exact same spot each time, but I think the key is that the needle goes in the exact same spot vs. "close to" the exact same spot. So the blood vessel only has one hole to heal repeatedly instead of becoming perforated by multiple holes in one area.

Anyway, they talked to Mom about the buttonhole technique and gave her some literature, and she told them she would like to try it. Until the scar tissue is fully formed, it is important that the same tech inserts the needles in her arm each time so the same "tunnel" is being used repeatedly, and also so the blood vessels are being pierced in the exact same spot each time. This dialysis clinic has one tech who does this, and Mom is comfortable with him, so hopefully they'll start that soon. (I did recently find out that they don't start the buttonhole technique until they are using the largest size needles, so it will be awhile before they actually start it on Mom.)

January 14 (Monday): So far so good with the fistula, although her blood pressure was a little low after dialysis on Monday.

January 16: The first needle in the fistula went ok, but the tech (the good one) didn’t like the way the second one felt going in, so he had to use the permacath for the second needle.

So we begin 2013 with some good news that the fistula has not been compromised and they can start using it again. But it seems like it's not always a given that the tech will be able to get the needles in, so we can't get rid of the permacath just yet. I guess we'll just have to see how that evolves each week.

Next up: Fun with insurance!

Wednesday, February 6, 2013

December 17 through December 26 - Another bloody mess

In our previous episode they finally started using the fistula in Mom's right arm for dialysis, but after two sessions she has a very large area of bruising on her arm. To my untrained eye it looks like a significant amount of bleeding has taken place below the skin. We are anxiously waiting on Monday morning so Mom can show her arm to the people at the dialysis clinic. Surely they have seen all types of complications with fistulas and can tell her what's going on, right? Wrong.

December 17, 2012 (Monday): Mom went to the dialysis clinic early this morning before her appointment to show them her bruised right arm. They said they had never seen anything like it and recommended she contact the surgeon who did the fistula, or go to the emergency room tomorrow morning if she can’t contact him. Mom called Dr. K’s office and spoke to his nurse. Someone will call Mom back. In the meantime, she’ll go on to dialysis and they’ll have to use only the permacath again. So here's another setback on using the fistula and getting rid of the permacath.

Mom talked to Dr. K later in the day. He said since the fistula still has the thrill (strong pulse), and when they listened to it with a stethoscope at dialysis today it sounded ok, the fistula has not been compromised. He believes the fistula bled internally after the Friday dialysis session, and what we’re seeing is that blood dispersing throughout her arm. He wants her to keep it elevated and keep ice on it, and he’ll see her next week, after Christmas.

Well we certainly weren’t expecting to hear that, and part of me wants to have Mom go to the emergency room anyway. But if she did go to the emergency room, they would just contact Dr. K and he would probably tell them the same thing he told Mom, so I guess we'll follow the doctor's orders and keep checking for the presence of the thrill.

December 18: Mom came over to our house today and it should come as no surprise that I took pictures of her bruised right arm.

Fistula internal bleeding
Bruising after initial use of fistula

Although the fistula itself was created in the bend of her elbow, the needles for dialysis are inserted in the upper arm (biceps area), with one in a vein and another in an artery. When they remove the needles at the end of the dialysis session, they have Mom put two fingers over the insertion points. So what probably happened is the bleeding through the skin stopped, but the vein or artery the needle was in was still bleeding under her skin. It looks like the blood has run down her arm (below the skin) and has pooled on the inside of her elbow. The darkest areas of the bruising are almost black.

December 19: At today's dialysis session, a new tech got Mom set up to start. After making all the connections he turned on the machine and blood started spraying the machine. This time it wasn't actually Mom bleeding, but a connection that must have come loose when the pump started. It took three people to clean up all the blood. One of the nurses walked over to the new tech and said something like, “Well I hope you remember what you did so you don’t make that mistake again.”

December 21: Mom had previously requested earlier dialysis appointments on Friday, December 28 and Sunday, December 30 due to family activities and her travel plans. She checked with them after dialysis today and found out they had scheduled her for 6:00 AM on Sunday, December 23 instead of December 30. Good grief. They really have their act together down there, don't they?

December 22: TUD (The Unknown Donor) has talked to someone at the pre-transplant group about his blood pressure situation. He was told he can’t be on any blood pressure medication and donate a kidney. The person with the transplant group said he should perhaps work on improving his exercise and diet. TUD already exercises pretty much daily and outwardly appears to be in good shape, so there isn’t much to improve there. His diet isn’t awful by any means, but she suggested he try a very low sodium diet for a couple of months to see if that helps. So he’s planning on doing that.

Mom was told about TUD this evening. Circumstances are such that I will not be revealing TUD's identity on the blog just yet. Sorry about that.

December 26 (Wednesday): The dialysis machine started clotting during Mom's dialysis session today and they had to stop dialysis early, after about three hours (instead of three and a half). As a result, Mom lost some blood because the machine couldn’t pump it back into her. Her hemoglobin was last at 7.7 (below 10 is abnormal), so this is not a good time to be losing blood. She was very cold when she got home, which is what usually happens when her hemoglobin is very low.


So that's a wrap on 2012. The year started with Mom being denied a liver transplant, and a few months later she was told to prepare for dialysis. She was evaluated for a kidney transplant and was told she must have a living donor. The first potential donor was quickly ruled out due to medication, and the second potential donor may be ruled out due to high blood pressure.

She tried to go on peritoneal dialysis, even to the point of having a major surgery, only to eventually end up having to go on hemodialysis anyway. Dialysis has been anything but a good experience, with one issue right after another including a bleeding incident that could have easily been life-threatening, two catheter replacements, an inability to take a specific type of drug that dialysis patients need to be on, and an allergic reaction to an antibiotic that made her itch like crazy for over a week. As the year finishes up she still isn't on her permanent dialysis access (the fistula), since something went really wrong the first time it was used and she has a massive bruised area on her right arm to show for it. And her hemoglobin has been low since at least August.

I believe that's two hospital stays (8 nights total) and four outpatient procedures in 2012. Let's home things calm down a little in 2013.

Sunday, February 3, 2013

December 9 through December 16, 2012 - First Fistula Foible

This post covers December 9 through December 16, 2012, followed by the monthly blog stats. 

December 9, 2012 (Sunday): As previously mentioned in the January 27 post, TUD (The Unknown Donor) was sent a blood pressure monitor to periodically measure blood pressure for 24 hours. TUD put it on yesterday, and circumstances led to Mom going to TUD's house today, not once but twice. TUD was not there the first time Mom came by, so no problem there. But we knew TUD would be there for Mom's second visit because she was invited there for dinner. TUD knew Mom might see it when she came for dinner and was prepared to tell her what was going on if Mom noticed it and asked what it was for. TUD did wear a long sleeve shirt such that it was partially or completely covered. (It goes on the wrist.) Mom didn't stay long for dinner and had a lot on her mind due to some unrelated stuff going on that day, so she didn't notice it.

December 11: Today Mom had a minor surgery done on her fistula, where a balloon-like device was inserted temporarily to expand part of the loop. It was done with a local anesthetic and there were no complications. Supposedly tomorrow at dialysis they’ll use both the fistula and the permacath.

Mom was sick the morning of Wednesday, December 12, so her dialysis was rescheduled for Thursday. They did start using the fistula on Thursday. [And there was much rejoicing.] We learned there are different needle sizes used in fistulas, each a different color. They are starting with the orange needles for her, which I think are the smallest. They also need to reduce the flow rate from 350 to 275 ml/min while using her fistula for now, then gradually increase it.

December 15: I found out TUD received a voicemail from the transplant office informing him that he did not pass the blood pressure test. (Now you know TUD is a male.) The bottom number (diastolic) was always ok, but the top number (systolic) was over 140 too many times during that 24-hour period. We don't know if that rules him out for good as a transplant candidate, or if he can lower it with medication or lifestyle changes and try again. TUD will call them next week to find out.

Mom noticed a little bruising on her right arm on Thursday, which was the first day her fistula was used for dialysis. The bruising continued to get worse on Friday and Saturday. It looks to me like the fistula may be bleeding under the skin. It does get better when she puts ice on it and keeps it elevated. She’s driving to Austin on Sunday and then flying back Sunday night. Hopefully nothing too serious happens before the dialysis clinic sees it on Monday.

December 16 (Sunday): My sister Laura picked Mom up from the airport tonight after Mom flew back from Austin. Laura called me after dropping Mom off and said Mom’s arm looks worse tonight than it did Saturday night. Laura said the bruising is now halfway up her upper arm and halfway down her lower arm. Mom is planning on going to the dialysis clinic first thing Monday morning instead of waiting until her appointment time. She is expecting she’ll be hospitalized. She can still feel the “thrill” on her fistula, which is a good sign since it indicates there is still good blood flow through it.

So they finally start using the fistula for dialysis and appear to have created a major bleeding complication. Will Mom need to be hospitalized right before Christmas to get this taken care of? There never is a dull moment with this dialysis.


Monthly Blog Status Update

Months behind as of January 2013: 3

Months behind as of February 2013: 2

Total posts: 56 (11 in January)

Email subscribers: 3 (Don't worry. I can't see the email addresses used to subscribe, only the count.)

Number of countries that have viewed the blog: 23

New countries that viewed the blog in January: