Thursday, November 13, 2008

A PH Adventure -- one of many

What you are about to read is something I wrote in July of '06 -- one of my many adventures with having PH and another epistle... Pulmonary Hypertension is a rare life threatening and progressive disease. At this time there is no cure but there are several treatments that can help you maintain a good quality of life. It's doable, scary at times but doable. With the proper attitude and lots of gratitude we will do fine.

Just in case you were wondering where I've been, the short of it is in the hospital for the better part of two weeks and then a home care nurse for two weeks at home. If you want a long read ~~ it's below. Volume III Chapters 18 through -- just joking....

Well, I'm back. What a month!!! Went for a regular check-up the middle of May on a Monday, they of course asked me how I was feeling and I said I felt like I was coming down with a cold. Big mistake -- well, maybe not -- they took my temp and I had a fever!!! So my DR said I get to stay at the luxurious, comfortable, well equipped hospital at the Cleveland Clinic. He didn't want to take the chance that my line was infected. I was admitted to the hospital right then and there. You might know, it's one of the only times I didn't bring a book with me. The testing started right away, about midnight they finished up for the day. Pokes, probes and x-rays. They do their regular middle of the night testing as well -- you know, take your BP, weigh you, take your temp (mine was still too high) and if you're really lucky they'll draw some blood!! Their mornings start about 6 a.m. give or take 15 minutes and again you have the routine: BP, weight, temp and maybe a blood draw. I had to have a special blood draw for a culture test -- just a couple of extra tubes and they were special color coded tubes. I was in style--color coded--who could ask for more. With a blood culture test you have to wait 3 days, with regular blood tests you can get the results within and hour, two at the most. The x-ray results showed that I didn't have pneumonia; at that point I wasn't sure if that was good news or bad news. If I had pneumonia they could cure it; if it wasn't, what did I have that made me feel so crappy (that's becoming one of my favorite words-but it says it all). I was put on two different types of IV antibiotics. I guess they felt if one doesn't work, they other will -- just joking there. I did learn that not all antibiotics will kill those little critters that are in your blood stream and that's why you need two. Well, naturally, being me, I had a reaction to one of them -- the one that was killing those little critters. I broke out in humongous hives all over my bod; well I don't think I had any on my nose but the rest of me was covered and sooooo itchy. Bring on the Benadryl!!! They gave me a shot of that and from then on I had a shot of Benadryl first then the antibiotics. And guess what, the Benadryl makes it difficult for me to breathe but it beat having those hives. I adjusted....

Each day the culture showed no signs of little critters so I was happy for that. That would mean that my line wasn't contaminated. They not only drew blood from each arm but also directly from my Hickman--the line that goes into my heart with the medicine and that's the one they were concerned about. Thursday came and still no little critters showed up. I was beginning to feel better, my temperature was normal (I have something normal?). The DR came in and said that I might be able to go home, they would rather keep me one more day -- just in case -- but if the next regular blood draw came back o.k., I could go home ~~ with the understanding that if something showed up in the culture, I would have to come back to the luxurious resort hospital at CCF in Cleveland, OH. I was sent home.

Home at last. I was sent home with a pill form of an antibiotic. I was tired, I was beyond tired, I was exhausted. You never get any rest in a hospital. Once my head hit that pillow that was all she wrote until the next morning. Home sweet home, it sure beat that luxurious resort I just came from.... I figured I'm just gonna hang out for the day. Didn't even get out of my jammies. Mid afternoon I got the call I was so hoping I wouldn't get. The nurse called and said something showed up in the culture. Bummer! I was told I could go to my local hospital and get another blood culture draw through them. That way I could stay home for the weekend and if nothing showed up at all, I would already be at home. Did I mention that my DR said he was going to change Murphy's Law to Merlie's Law. You know, if something is going to wrong, it will. Well, I had some complications with that blood draw but I'm not going to get into that one. Needless to say, it was not a pleasant experience.

Monday morning I got the call I didn't want to get and was told to get over to Cleveland like right now. Tom came over after golfing and what a surprise I had for him; I really don't know what I would do without him. He is such a support and comfort for me and all I give him is heartache and grief and that long ride to Cleveland. He was not a happy camper but off we went. At least this time I had a change of underwear and I brought a couple of books. I figured I would be there at least 3 or 4 days. They don't waste any time when you get there. They barely give you a chance to get into their wonderful wardrobe before they start in. You know they give you a wonderful outfit to wear at this luxurious resort hospital; it has tie strings and snaps and a special pocket for your portable heart monitor. I was in style, the outfit was sheek. Who could ask for more than that.

Tuesday early morning came and they put an IV in my arm for my Flolan (the med that usually goes into my heart through the Hickman), I can't be without it and then they took me to radiology to remove my Hickman. I was given a pain killer (ya, right--by the way, unless it is absolutely necessary people with Pulmonary Hypertension should not be put out and under with any anesthetic) and started to slice and dice as my skin had of course become attached to the line where it entered my chest. It really didn't hurt but I could feel what was going on. The line was placed in a "hazardous" bag and off it went to the lab and off I went back to my resort quarters, my suite.

Flolan is a very potent drug and every time the pump went off to shoot the med into my body I could feel the pain. I was totally surprised with that one. I always joked how the pump sounded like a camera shutter but I never felt the medicine going into me. This was a new experience. And guess what -- Merlie's Law fell into place. The Flolan blew my vein so they put it in the left arm. The pain in that arm was excruciating and again it blew the vein; I asked them to put it back in my right arm, although it was painful at least I could tolerate it in that arm. My arms were turning red beyond my elbows so something else had to be done. This all happened through out the day -- I mean it didn't all happen within 5 minutes or so.

The "Orange Team" was called in and all I could think of was the Terrorist Alerts. When it reaches "orange", you better take things a little more seriously. I think the next step up in the medical field is "Code Blue" and I've been there, done that and I don't want to go there again. I was told they were going to put in a "Central Port" in my groin area and that line would run up to my heart and the Flolan could be attached and things would be fine. Ya, right!!! They gave me a pain killer and started to slice and dice (that's becoming too familiar to me) my nurse gave me two of her fingers to hold (she was just great) and I told her I might break them. I said OOOWWWW!!!! and they said can you feel that?? Well, dah!!! They gave me more pain killer. I said OOOOWWWW again and they said can you feel that??? I mean give me a break. More pain killer then they sliced and diced again (there were 3 of them and they took turns) and told me I had a strange anatomy. Say WHAT!!!??? I felt like asking if anyone needed salt and pepper. From where I could see it looked like they were cutting up a steak!! The line would kink and wouldn't go in.

They decided to go into my chest but they had to stop the bleeding from my leg. I could feel pressure but I couldn't feel pain by that time and just try to picture 3 grown men pushing as hard as they can on your upper leg. The bleeding finally stopped and they started to slice and dice on my chest -- now remember that I had the Hickman removed from there. They decided to cut on the right side as they figured that the new Hickman would be put in on the left side... I mentioned that I thought the DR that removed the Hickman said it might go back in on the right side; they said it usually goes in on the opposite side of the previous Hickman. More pain killer and they started in to slice and dice. They asked if I had any pain and I said no but I could feel them moving around. Again they said my anatomy was strange (Merlie's Law?) and they were having difficulty. I then told them they were at my throat. Wrong turn at the crossroad... They tried again and I started to scream MY EAR, MY EAR!! They stopped and pulled back on the line and tried again. That one really hurt and I thought for sure I broke my nurse’s fingers, she said she was fine. Through out this procedure my nurse stayed right with me except for a few times when she had to get more pain killer (Merlie's Law) and a couple of other things for the DR's. Finally they thought they had it in place. I can't remember if it was 4 or 5 hours that they were messing with my body. An x-ray was ordered and they finished up at 3 a.m. At 4:30 a.m. the techie came to my room for the x-ray, I was so glad I didn't have to go to them and he even took the picture while I stayed in bed; he said it would be ready in an hour or so. The Flolan couldn't be put into the new line until it was checked out. At 8 a.m. my DR called x-ray and got the results, the line was in the proper place and I could be hooked up to my Flolan. The pain in my arm finally stopped but I got a new one -- my leg. Because of the pressure they used to stop the bleeding in my leg they bruised it badly. I had a major blood clot (not the kind that can kill you) and I couldn't walk. I had a pressure bandage put on and I was told to stay in bed -- not to walk it off as I was hoping I could do.

Wednesday I was in such pain that I don't remember much of it. The Tylenol that they gave me barely helped. I couldn't read, I didn't want to watch TV but I had it on to try to take my mind off the pain. I didn't want to eat and I had IV's going in here and there. As long as I didn't move I could handle the pain. I was told I might be able to go home on Thursday if my blood culture came back negative. I put my mind in gear and said that I would walk on Thursday.

Thursday morning they came for me with a gurney and brought me to the operating room -- had to have a new Hickman put into place. More pain killer -- was it becoming my friend?? No way and I wished it worked for my leg and not just the area they were working on... more slice and dice -- and then the new Hickman was in place. They also put a PICC line in my arm. I was told that when I went home I would have to have an IV antibiotic every day for two weeks and a nurse would come to my home to hook me up. Tom called me every hour to see if I would be coming home. They were trying to find a nursing home care that would be local to me. They finally found out that Sharon Regional has a nursing home care program and they would be able to come to my home to administer the "Vanco". Shortly after supper I was discharged. I had to have the nurse or the transporter lift my leg in and out of the wheelchair and then help me lift my leg so I could get into the car... The nurse gave my some Extra Strength Tylenol just before I left; she knew the ride home (2 1/2 hours) would be painful sitting upright that long. It took the edge off. By the time I got home I was exhausted and Tom had to help me lift my leg out of the car and then he said maybe I should have stayed another day or two. Wrong!!! No matter how much pain I was in, being at home was so much better than being in the hospital. It took me about 20 minutes to get up the stairs (all 14 of them). I was tired, I was in pain and I just wanted to put my legs up and off the floor and lean back. Tom made sure I had some Tylenol handy, got me my favorite drink made sure I was comfy in my recliner and then he had to leave. It was bedtime and I just slept in the recliner that night.

Friday morning came too soon. About mid morning the doorbell rang. OH NO, BUCKWHEAT! Luckily the FedEx driver knows that I don't move too fast anyway. He had all the meds from The Cleveland Clinic. Shortly after that the nurse called and said she would be there around 12 noon. She opened the box of goodies and arranged them in an order that was convenient for the procedure. The medicine was placed in the refrigerator and the rest of the goodies were left in the box. I now have my own IV pole, bet you’re jealous about that one... The same nurse would come during the week and different nurses would come over the weekend and this of course all started over the Memorial Day weekend so all plans for any cookouts involving me or Tom were cancelled. The only time I got out of my recliner was to go to the bathroom or go to bed and for that one I had to rig a little step up and get into bed backwards. I still couldn't lift my leg on its own and it was too hard for me to lift it if the other leg was already in the bed -- hurt too much to bend over -- so I just slept with my head where my feet should be and my feet where my head should be. Hey, whatever works. If I had to get up -- which was a chore -- and after a few steps I could do a little better. By the second Saturday I was home my leg finally started feeling a little better. But of course, I overdid it that day and paid for it for the rest of the day and on Sunday. I couldn't sit upright so I have been going through computer withdrawal as well. I so wanted to send on all the jokes that I received but I just couldn't sit at my desk for any length of time. Today after almost five weeks of all this I am able to sit for a little bit of time. My leg is still sore and I still have trouble lifting it properly but I am able to sit for a little while. Although I could take sponge baths I look like a rat in a storm sewer. Still can't bend over too well and anything that hits the floor stays there until Tom or Elizabeth (our daughter) come over, they have been getting most of my meals for me.

I want to thank those who called or even wrote wondering what happened to me and to those who were away themselves and to those who I don't write to all the time, this is my latest adventure. I finished up with the antibiotics yesterday and the nurse removed the PICC line from my arm. I am on the road to recovery and I hope it won't take me too long to get caught up with all those wonderful jokes, and inspirational messages that kept me going. I did respond to a few folks but it was with using only one finger and that took too long.

Merle ~ OHPA



Cathy said...

Hi Merle,
Just wanted to let you know that I have been there and done that! Not as drastic as you.
Those Mr Critters sure do know how to hide!

Jen said...

Wow.Merlie..That is one adventure..

Take care and thx for sharing...



phtony said...

Wow! - My PH story pales in comparison - So two years later, do you feel better or worse than after getting the initial treatments?

take care,


Teddybear said...

WOW - you have been there, done that haven't you. Thanks for sharing and stay away from the critters they can cause us problems.