Birthday Countdown.....

A week from today is my birthday. I'm so excited. Why? Because I made it to another one. Yea!!!! Every year since my cancer diagnosis at 23 has been a huge victory for me. I don't take life or anything for granted.

I went for my other CT scan and it showed no fluid. That was good....except they found two enlarged lymph nodes. (they had found one at U Penn last year.) Since I have a history of lymph gland cancer this is going to have to be monitored. My lung doctor said not to be panicked by this as my body has been through a lot of trauma and it could be some kind of virus or low grade infection. I am counting on that and honestly, not worrying much about it. There have been other times they thought I might have something and it was worrying for nothing. For me, the focus is getting those PH numbers down. My heart has improved which is why I am not mass producing the fluid right now. It has shrunk (it was very enlarged) and the third leaking valve is leaking less. Yes, I have yet another leaking valve. While I was on the operating table they tested it and it wasn't leaking but it slowly began to leak due to the heart failure and enlarged size. So, I will be focusing on the good and improved and hoping for things to get even better.

There is nothing I really want for my birthday. Just a great cake. Rob usually gets me a strawberry shortcake. Not just any strawberry shortcake but from a fabulous bakery. I love strawberry and we had it as the filling in our wedding cake. Lately I have been craving lemon. Maybe something with lemon. We'll see.

Stay cool. We are in another heatwave. A bad storm Friday night left many without electricity, including my family in the Maryland area. Hoping it comes back soon for them.

Moving Right Along

I found out that there were some cells in my fluid they removed that should not have been there. UGH. I have to have another CT scan on Monday. If there is more fluid now (or later) I need to have it removed and biopsied. Since I have a history of lymphoma this will have to be watched as the cells were inflammatory lymph cells. I am not going to sweat this. The lung doctor feels it could be as a result of all the trauma my body went through last year. Hard to believe that eleven months ago I was just home from the hospital after respiratory failure and waiting to have yet another heart surgery late July. I've come so far.

Most of my PH friends are at a convention in Florida. How I wish I could be there. Some of them had a hard time getting oxygen delivery squared away. I didn't have the money to go and honestly, I couldn't handle the stress at this time of the travel and worries about oxygen. I have been dealing nonstop with medical issues and bills here. I kid you not, practially every spare penny goes for medical expenses. We just got done refinancing our home to lower our mortgage payment. The difference will make our car payment. We have also reduced our bundle package services to save $70 per month. Every bit helps.

A Local Girl

There was a story on our local news about a little girl with pulmonary hypertension. If you want to watch the video click here. It is so sad when you know a young child has had to deal with this. While I struggle now I was pretty healthy up until about twenty years old. I cannot imagine how hard it is to be a sick child. Especially if you have healthy siblings running around. I thought they did a great job of explaining what pulmonary hypertension was in the video.

The weather has been very bad humidity wise. It was 85 yesterday and I struggled when I left the house. I think the temperature doesn't help but primarily it's from the humidity.

Fluid Gone (at least for awhile)

On Friday I had my procedure, the thoracentesis where they removed the fluid which ended up being about one litre. Ironically, this hurt more than the first time they did it. Not as much as the last time though, when I ended up with a chest tube.

I came home quite sore and kind of took it easy for the weekend. On Sunday my son came over. We went to the mall to replace his broken cell phone and picked up cake to take to my mother's. I came home and tried to take it easy but by now my right hand was hurting, particularly around my thumb. When they had the needle in my back I was required to grab onto a hospital table and hold tight. I think that injured it somehow. Yesterday I had to go see a doctor who told me to put ice on it and take some antiinflamatories. While I was waiting for the lung procedure I had to go off of my coumadin. This means that I must have shots of Lovenox in my belly to keep my blood thin (only works for about twelve hours like heparin.) I had to not have it Friday morning and begin again Friday evening. My belly looks horrible. It's one gigantic bruise and some huge lumps which are painful. Yesterday my INR was 2.5 which means I got to stop the painful, expensive shots. YES!!! I was thrilled.

Even though they removed the fluid I am somewhat breathless. I had my oxygen tank refilled today. At night when I put on my mask and feel the oxygen going through my cpap mask it is pure heaven. The machine also adds moisture.

My entire family (mother, brother and his wife, sister and her "friend" are going to my mother's vacation house which is a town my other brother and his family live in. I was asked to come but a. oxygen would be a problem and b. there wasn't going to be enough room. It kind of depresses me that life goes on. I am left out of many things and no one seems to even think how that makes me feel. I went to Bed, Bath, and Beyond for new sheets today and I saw these people running and having it so easy and I thought how they will never know how I feel. I wouldn't wish this on anyone. Somedays I have a lot of spunk and can push through but when you have several bad days in a row it's really hard.

I am doing much better after getting the ten pounds of fluid off. I also ordered and received a pulse oximeter. I got a good one and it works well. This will let me know exactly what my oxygen is rather than guessing. My doctor told me last week that you really cannot judge your oxygen level by how you feel. At times I might feel well when it's low, or feel sickly when it's fine. This way I can better keep tabs on when I absolutely have to be on the oxygen.

This week I had something going on nearly everyday. Next week will be the same. I am getting caught up on doctors appointments, dentist visits etc. I haven't seen my eye doctor, gynecologist etc. in over a year. I finally got caught up with the dentist and am getting my teeth cleaned Monday. That will be done. With me not working you would think I would have a lot more time to do these things. I have been dealing all week with insurance issues. I am very unhappy with United HealthCare. This was the insurance I had through my employer. They paid for some of the visits for my pulmonary rehab and yet denied about six others. The provider has called me nonstop about this. I have called and spent hours upon hours with United HC. I am now dealing with their "Rapid Resolutions" Dept. and I certainly hope to get this resolved. The provider is threatening to turn me over to collections, claiming they told her I am responsible. Since this was a covered benefit and I called to make sure that I needed no special authorization I fail to see what the hold up is. I now have Blue Cross and I can tell you that while it's harder to get authorizations for CT scans and such the bill paying goes much smoother. I pay 20% with Blue Cross but it's worth it. I can see any doctors I want, without referrals. Unfortunately, the DME (durable medical equipment) which I need such as oxygen costs me that percentage as well. With my other policy I paid nothing. This means having a large oxygen bill should I choose to travel OR trying to travel without it. I cannot fly without it. I use it to sleep overnight. I am sure if I went overnight one night I might be okay but I couldn't function long without it at all. When you have an ongoing illness, you need to understand your insurance coverage well. Often doctors prescribe things that might not be covered and if you don't make sure that you have that coverage you can end up having to pay for them. I learned this the hard way.

The Fluid Battle

The fluid battle goes on. Not everyone with PH has the battle. I have PAH which means I also have right heart failure. I have problems in my left side too as I have two mechanical heart valves. Your heart is a pump and mine is not working well right now. As a consequence I retain too much fluid. I have lowered my salt intake significantly, at times drastically. I take diuretics each day to help remove the fluids. Still, I can take on several pounds of fluid overnight. It is so frustrating at times. When I have fluid the PH medicine can't work. When the PH medicine can't work and my heart is working harder I get more fluid. A vicious cycle. Right now I am carrying at least five pounds of fluid. I am using peanut butter with no sodium, buy low salt everything I can and still have the problem. As a result, the past few days I have been SOB (no not a son of a b*tch but short of breath.) I have learned all kinds of these things from fellow Phers, aka PHriends. I love them. They know where I am coming from and understand what a bad day can be like.

This past week I was disappointed when an old friend was going to lunch with other friends. I used to be asked to join them but she doesn't anymore because she doesn't want me to feel bad that they are going if I'm not up to it. So instead I felt left out. She has another friend dealing with another lung issue, COPD, who stopped being her friend because she smokes and smells of smoke. I have told her that she cannot smoke in my presence. We usually meet at a diner or something so I don't have to smell the smoke. I would think seeing two other people on oxygen would be a huge incentive to stop smoking. People her age no less.

We have a new car. I am enjoying that. Last night we went to run errands, pick up a few groceries and I love the XM radio so much that I didn't want to get out to go in Home Depot. We had to pick up screen as the cat knocked out my screen door on the kitchen slider yesterday. He jumped, it fell on a chair and the old screen split. The cat seemed pleased at this. I would have thought it would have startled him but not at all. He's so adventurous. My husband, Rob has begun the job of replacing the screen. It's on our kitchen table and the cat is bolding announcing his presence as if to say "I'm here if you need help." Either that or "No screen can contain ME!" He is full of mischief and he's ten years old.

I go to Philly on Wednesday to see the PH specialist team. Wish me luck. They have to decide whether or not to change my medicine. I am kind of hoping not as it would mean adjusting to something else and they all have side effects for me. On Thursday I see my lung doctor to make sure that the pneumonia has completely gone. Last Friday I was running a low grade fever and they put me on another course of antibiotics. That could also make me feel tired and SOB. It's so hard to determine what is the cause. I'm a puzzle and the pieces don't always fit with ease.

Sunshine and Happiness

For those of you who have followed me for awhile you know it's been quite awhile since I have had a day where I felt good. It happened yesterday! I am overjoyed. I woke up and saw the sun and knew it was going to be 70 and my heart soared. I went to get my blood test and found that my INR was within target (it had been too low for weeks putting me at risk for a blood clot) and I was somewhat concerned. After that I picked up my taxes and went to the new Dollar Quest store. Things there are usually more than a dollar but still bargains. After I found a few things I talked to my mother who was in Freehold getting her hair done. We met at Panera's and I had my favorite lunch. These days what I most enjoy eating is a salad. My favorite things on that salad include goat cheese or blue cheese, nuts, dark green lettuce, onions and grilled chicken or turkey. This filled the bill. Add a small piece of freshly baked bread and an ice tea with acai and I was over the top! I brought home my husband's favorite sandwich from there and didn't have to worry about dinner. I really wanted to plant some flowers but there is a breeze that if I am not in the sun chills me. I get cold very easily, I suspect it's the PH medicine I take.
I have upped my meds and gotten some fluid off of me. That has helped me. I am going to battle the fluids as long as my heart remains in heart failure. I am so hoping that the PH med will lessen if not stop it. I know that I will have good and bad days and I am determined to enjoy every second of the good ones. I had a bad night of sleep last night so hoping I can get a brief nap before my oxygen delivery so that I can enjoy this beautiful weather: sunny and warm.
Have a wonderul Passover or Easter.