David in Texas. Hello all!

Hello, all!

I've been lurking about now on this site for a few days making comments here and there, and I've discovered that this site is a great resource fed by many kind people who, while meeting their own individual challenges, are willing to be concerned about others and to help guide them with any sound advice they can and to help comfort them with sincere words of support when they can. I hope to be able to contribute similarly.

Hmm... how did I come to be here?...

Well, on my second solo manual PD exchange at home, I experienced fibrin in the drain bag. Before calling my PD nurse, I decided to see what the Internet had to say about this being common or not. I found several sources, including this forum, that indicated it was normal. (I've only had that one incidence of fibrin.) To learn further about my path, read the short and/or long versions.

Short Version:

Athletic type with moderate build stopped in his tracks by unrecognized and uncontrolled high blood pressure that led to kidney failure and a two-week hospital stay due to extreme fatigue and other negative symptoms, including abnormal weight loss. I had PD catheter installation surgery. While it healed, I had five hemodialysis treatments via a neck catheter to begin cleansing my blood immediately. Trained on manual PD then on automated PD. I've been doing automated PD now for about a week and a half (in relation to the date of this post). I'm feeling great, but it seems the weight loss continues despite an excellent appetite (185 lbs down to 145 lbs from June 2013 to October 2013). PTH is WAY out of bounds, so hoping that a new prescription of Sensipar will normalize that and help stem the weight loss.

Long Version:

Superman in denial: Strangely, for about three months starting in June of 2013, steathily, my health began to decline. In August as things became more than noticeably bad with fatigue and nausea after even just walking from the bedroom to the kitchen, I weighed myself and noticed that within three months I had dropped from 185 pounds (my steady adult weight for more than 30 years) down to 160. A TWENTY-FIVE pound drop in just three months. Very strange as my eating habits and diet never varied from what it was before. Up until that time, even during the decline until I became too weak, I exercised regularly and would say that I was in great shape with a nice muscular and toned build. Before actually weighing myself and discovering the weight loss, I thought the "new" thin look that I had developed was due to the little bit of extra running I had put into my exercise program. Hmm... not so. But for a person who has only known great health, denial that this superman had fallen into cryptonite was high.

Reality check: About the middle of August, I was at a local CVS pharmacy to buy an iron supplement (thinking that iron would help me overcome my growing fatigue), and they were conducting a free wellness screening program where they check a few vitals, including blood pressure. Considering my sad state of health and not knowing when the service would return to this CVS again, I decided to have them check me out...

Blood Pressure: 233 / TWO THIRTY-THREE!!

EMERGENCY!!!: At the moment, other than feeling weak, I felt fine... no headaches... and no other symptoms that would indicate such out of control hypertension. The nurse's eyes popped out of her head. She was taken aback thinking for sure that the BP reading was a fluke. Her incredulity only increased as she took it three more times with the same result. She immediately called in the pharmacist. He looked at the numbers, looked at me, then asked, "Do you want me to call an ambulance?" I thought he was joking, so I laughed, but with stern face, he said again, "Do you want me to call an ambulance?" He proceeded to explain the seriousness of the matter and strongly recommended that I get to a hospital right away. In less than a minute it seems, sirens were blaring louder and louder! "They're coming for me!!", I thought. When the EMTs (TWO ambulances no less) arrived (what a GREAT crew they were!), they asked me a few questions and agreed that I should go for a ride with them. Never in my life had I had a medical emergency. Never in my life had I been whisked away in an ambulance. But there I was, the emergency patient riding in the ambulance zooming down the expressway with flashing lights and blaring siren... concerned... yet relieved... my health issues would soon be addressed.

Nurses are angels: I'm not a believer, but I must say that nurses are angels. I'm just David... nobody special, yet the nurses at Ben Taub Hospital in Houston treated me like I was the king of the world. I know it is their "job", but their kindness, concern, and effort seemed to go well beyond just a job. Each one, regardless of their level in the hierarchy, seemed to place their degree of happiness with my level of care. I am forever grateful to them. The doctors were great as well, but the nurses are on the front lines giving most of the care.

Lessons learned: I was in the hospital for three weeks. During that time, the docs worked with various medications to bring down my blood pressure and indicated that uncontrolled hypertension had led to kidney failure. (I've known since forever that this was a risk for us African American types--the silent killer--but like most people, my apparent great health, normal BP readings in younger years, and NEVER feeling like I was sick enough to see a doctor deluded me into a false sense of being immune to hypertension. I've now become an evangelist telling everyone and suggesting that everyone tell everyone to check their blood pressure regularly. Perhaps, if I had caught the trend sooner, BP meds would've gotten things under control, and I could've saved and retained a healthy level of kidney function. Ahhh... life is full of lessons.)

The choice: PD or HD: I received education on hemodialysis (HD) and peritoneal dialysis (PD) in the early days in the hospital after it was determined that I would certainly need dialysis. For me, the choice of PD was a no-brainer due to the lifestyle that it affords and no fistula or blood exchanges. Honestly, I had little to no concern going into surgery for the catheter placement. I've never had any surgery before, but I was as cool as a cucumber; perhaps, because I had resigned myself to the fact that it was necessary to save my life. 99, 98, 97... that's all I remember before surgery and before being woken and told that everything went very well.

Hemo treatments: Leading up to my stay in the hospital, my blood had become so toxic that during a week's worth of heeling for my PD catheter, I had five treatments of hemodialysis via a neck catheter (I hated roaming the hospital halls with a neck catheter... hahaha... people look at you really strangely... hmm... maybe because you look really strange with this "thing" sticking out of your neck... BEYOND Frankenstein). After the week of healing and hemo, I was released from the hospital into the care of a small dialysis center with a great staff.

Training: I received manual PD training over a two-day period and picked it up so quickly that after the second day of training, they sent me packing with supplies to do it myself at home. (Of course, any new process can be intimidating at first, but if you step through it in your mind several times before actually doing it, you begin to understand the purpose of each step, then actually doing it seems easy and natural.) (At first doing manual PD was interesting for me--it was a new experience and... WOW... what genius devised the scheme of using one's own peritoneum to filter wastes from the blood and draw out extra fluid! I actually looked forward to doing the exchanges. However, after about a week's worth... it became a repetitive chore!! BUT, I'm glad that I got such good practice because now I feel that I can do manual PD in the dark, and that could come in handy in the case of an extended power outage.) After about two weeks of doing manual PD, I was trained on automated PD, again over a two-day period, and again, picked it up so quickly that I was sent home with a machine and supplies to begin automated PD at home. (The same is true with the automated PD process: Don't be intimidated by it. Just step through it and visualize the process several times in your head, and that will help it feel easy and natural when you actually do it.)

Currently as of Wednesday, October 23rd: These days, I'm feeling fine. I'm back to exercising, walking, jogging a bit, a bit of tennis and basketball. Problem is... I seem to still be losing weight. I'm now down to 145. That's an extra 15 pounds since I left the hospital and 40 pounds total since before my health began to decline in June. My last two blood assays show that I have a PTH level (http://en.wikipedia.org/wiki/Hyperparathyroidism) that is WAAAAY out of bounds. The normal range for PTH is 14 - 72 pg/mL. Last month, my reading for PTH was 1028. My most recent blood test shows 2273. There are two drugs used to lower this hormone. I've been prescribed the one known as Sensipar. I'm hoping that after a few weeks on Sensipar, my PTH level will be returned to normal range. As the literature shows, there are several negative effects of high PTH. I'm thinking that maybe one of the effects of high PTH is to block the body from replenishing itself with nutrients from the bloodstream from food consumption. I'll have to do more research on this, but I'm hoping that's the case; otherwise, it seems I'll soon blow away.

Information:

Below are some useful points and links for those new to dialysis that I've posted previously in other comments on this forum. I'm not a "shill" for any particular organization--just sharing good, well-organized information that I've found regardless of the source.

There are risks and benefits associated with each form of dialysis. Consult with your doctor(s) who can help you make the right decision for your health and desired lifestyle.

Peritoneal Dialysis requires the use of the body's peritoneum to filter extra fluid and waste from the blood.
http://en.wikipedia.org/wiki/Peritoneal_dialysis

Manaul (Continuous Ambulatory) PD requires four periods of about thirty minutes to an hour per day to do manual fluid exchanges.
Automated (with the small machine) PD requires 20-minute connect/prep (in the evening/at night or whenever you choose to begin therapy), seven to nine hours of therapy (while sleeping, working, or other in-home activity), and 20-minute disconnect (in the morning or whatever time the therapy ends). Your day is left free to do... whatever.

Hemodialysis requires the transport of blood in and out of the patient's body to a machine that cleanses it.
http://en.wikipedia.org/wiki/Hemodialysis

In-center hemodialysis requires two to four visits, each of several hours, to a hemodialysis center where you will be managed by medical staff who control the entire process.
Home hemodiaysis can follow any of three different schedules:

Conventional HHD - done three times a week for three to five hours. It is like in-centre hemodialysis (IHD), but done at home.
Short daily home hemodialysis (SDHHD) - done five to seven times a week for two to four hours per session.
Nocturnal home hemodialysis (NHHD) - done three to seven times per week at night during sleep, for six to ten hours.

Videos can help you SEE what each process looks like and may help you in making your decision:

Manual and Automated PD: http://www.youtube.com/watch?v=dyNjWyF1H8M.
In-center Hemodialysis: http://www.youtube.com/watch?v=saJoipF4noY.
Home Hemodialysis: http://www.youtube.com/watch?v=2jotaJ5kd6s.

On the following topic page, I explained to another member why PD was a good choice for me and may be for others as well: http://ihatedialysis.com/forum/index.php?topic=29683.0. Please read her story, then read the comment on the page from Vitality (me). I'm sure there are members on this forum who prefer and would advocate for some form of hemodialysis. Your commentary is very much invited and requested.

Diet and Lifestyle on Peritoneal Dialysis

Your PD nurse(s) and doctor(s) will share information with you regarding the need to modify your diet to reduce sodium (salt), phosphorus, and potassium consumption. DaVita, a major dialysis services company, has FANTASTIC materials online regarding ALL things associated with dialysis:

http://www.davita.com - Home page
http://www.davita.com/kidney-disease/diet-and-nutrition - Diet and nutrition
http://www.davita.com/cookbook/index.cfm?cmp=dvahome_cta_cooking_download - recipes

Unfortunately, another change is no swimming, period.

(I did read somewhere about the ability to swim in some kind of specially prepared water.) And also, no heavy lifting or extra-strenuous activity when you are in the "filled" or "dwelling" state of PD. You can exercise while in this state, but nothing that flexes or strains the abdominal muscles. Otherwise, when "empty" or "drained", all strenuous activities are fine.

As far as I know, those are the only lifestyle changes to expect. I, personally, am back to jogging/running, playing tennis/basketball, doing yard work, and working out as usual. So, life on PD is quite normal other than the PD process at night. I holster my transfer set in the wrap-around waist harness. It is unnoticeable, even with just a t-shirt covering it, and I don't think of it during the day unless I specifically examine it. The brain is surprisingly adaptable to changes to the body, and you will adjust and feel it normal in a short while.