Back from the Mayo clinic trip #2

[tiggerangelgirl]

I just wanted to thank you all for your prayers and encouraging words, God opened up the doors and i was able to go back to the Mayo clinic. I left on july 4th and just came back this week. I was able to see one of the top specialist in pediatric cardiology and he also took me on as a charity case, my insurance only pays 80% up there. Well I finally got two diagnosis, but first I want to give God the glory! He has been with me throughout my illness, when it seemed like nothing but stormy skies and rough seas was all around , He spoke peace and gave me love, I give him the glory for my life and I pray that others can seek him and get to know the love that he has for each and everyone of us. "He says that he will never leave us or forsakes us" This is who I stand on in times like this. God has just opened up doors and allowed me to be blessed. I now have free air trips to the Mayo clinic any time i need to see the doctor, a program called "Mercy wings" has accepted me and I wont ever have to worry about trying to raise money to get airline tickets, this is all done through private plane owners who donate their time to help the patients at the Mayo and this helps me not to have to worry about being able to get the best treatments.
Enough of that I just wanted to give God Glory before i gave my not so great news. I have finally gotten two diagnosis for my illnesses and it has taken over 10 specialists and many, many test. All this time my symptoms had started to become worse nothing new ever came about, but the edema and the fall in O2 stats came back pretty quick. It only took my doctor two days a 2 heart catherizations to finally get the diagnosis. I know some of you might be familiar with it and any information and encouragement is greatly appreciated and i know I have a very long and hard road before me. On Tues I was finally diagnosed with Restrictive Cardiomyopathy and Primary Pulmonary Hypertention. I'm not sure why it took so long for them to get here but I'm at stage three. They sent me back here to North Carolina to start treatments so that I would me more comfratable at home. friday I strated 4 new medication for my heart and fluid pills, they had to turn my pacemaker waaaayyyy!!!! down to 50bpm which has really been hard to get use to, also tomorrow I start some type of treatment through my port-a-cath I think it is weekly or I have to have some type of pump connected to me i think it is called epoprostenol and I have to learn how to use that. I see that doctor tomorrow along with the blood specialist because I have to start my blood and iron fusions back up. this has really been the hardest part for me knowing that these two diseases are not curable and that my heart is slowly dying. I feel like there is so much I still have not accomplished. i was really looking forward to completing my nursing but my cardiologists said that would put too much stress on my heart, and also i still have my prescious neices who I love so much, and can't even think about not being here for them. Has anyone ever had to face any circumstances like this?/ I could use all the encouragment and prayers right now as I struggle with trying to figure out where do I go from here. I know that Iam a fighter and I wont give up but this news has been really hard for me and i dont want to loose faith or trust in My loving savior. Hopefully talk with you all soon thank you and God bless Nicole

 

[Ross]

Hi Nicole

Your not alone, I'm right behind you with the same diagnosis. Yours appears to be a bit more advanced then mine, but I was told the same thing at my last Doctors visit and all the thoughts your having, hey, their running through my mind too. Mine literally told me that my body is in sort of a race to see what fails first, heart, lungs, or kidneys. That wasn't the news I was looking for since I was proud to have lost all the water weight and it showed on their scales. It really knocked the wind out of my sails. There are places I want to go, people I want to see and things I want to do, but it's just not possible.

We fight as hard and as long as we can. The rest is up to God. We don't have any other recourse that I can see. Can you?

 

[Phyllis]

Hi Nicole,
I'm glad that you finally got a diagnoses, but sad that you have to go through so much. I know your strong faith and fighting spirit will take you a long way. Please know that all our prayers and best wishes are with you. Please keep in touch and let us know how you are doing and keep fighting for the sake of those two special nieces.

 

[Mary]

Nicole,
I'm so glad that you have found a means of travelling back and forth to Mayo.
Perhaps new research will bring advances in your restrictive cardiomyopathy and primary pulmonary hypertension.
You're in my thoughts.
Mary

 

[marky]

Nicole..
hi!
Wow that diagnosis is a mouthful, but your optimism is amazing. With God all things are possible, you sure sound like you live by that promise!

I will be praying that you get some relief from the new form of treatment outlined for you.

 

[Karlynn]

Nicole, you are a fighter. I pray that God provides you with the strength you need.

 

[Nancy]

Joe also has pulmonary hypertension and restrictive/constrictive cardiomyopathy. Joe was on Tracleer for his PH for several years and that brought his pulmonary pressures down to the mild range (from the severe range), but he has recently had to go off Tracleer (a pill) due to liver problems which it can cause. So far his PH has been OK while off it, but it would be my guess that sometime in the future, he would see the pressure go back up.

It sounds as if you are going to be on Flolan. Those who do find excellent relief with their symptoms. So I hope the same for you. It is not an easy medication to have to take, but people report that once they get the hang of it, it is just another thing to do and the relief is so good that they do not mind.

Flolan has been mentioned for Joe, but because of other medical problems, it has been ruled out. If that is a forever thing I don't know.

I want you and others with PH to know that there is a very new pill drug (Thelin) that it awaiting approval from the FDA this summer. It is much the same as Tracleer but with better compatibility with the liver.

Here is also a list of common drugs used for PH.

http://www.phassociation.org/Learn/What-is-PH/drugchart.asp

There are no easy answers for the restrictive heart disease that Joe has. There is an operation, but that has its own problems, and he has too many other problems.

My guess is that you will be finding good relief with the Flolan.

It is a darned shame that with all you have been through and all the testing you have had in the past, that you weren't able to get this diagnosis sooner. It speaks volumes about how little most doctors know about PH. And it is a common experience with others who finally got a diagnosis. They have been ignored and "blown off" by their doctors until their symptoms almost became life threatening. It is one of medicine's dirty little secrets. So I am very sorry that you didn't get help sooner.

Here is a link for the Pulmonary Hypertension Association forum. Also look at their main page for wonderful information and links.

Doctors who are reading this and have patients with PH might want to read the entire site.

http://www.phassociation.org/Message_Boards/main.asp?board=1

 

[Nancy]

Forgot to add one thing. PH makes you gain more water weight than even CHF, and when you have the combo of CHF and PH, then it's a double whammy. Putting yourself on a VERY low sodium diet will help tremendously. I know that it has helped Joe a great deal.

It is a pain and it takes some getting used to, but you can do it. You may have to make many things from scratch. But in the long run, it will be a great benefit to you.

One of the main benefits is that you are able to keep the diuretic usage as low as possible, and that helps your kidneys.

 

[hensylee]

I remember your very first post. It was so sad and desperate. Those of us who do know how very far you have come since then are grateful for the lessons you have taught US. The fact that you finally got help and the years since then are testimony to your spirit. The good news that you can now get treatment as needed instead of having to hunt for it is a miracle in itself plus transportation to wherever you need to be. yOU are a great believer and God will carry you through to wherever He needs you to be. You know you have our sincere prayers all the way and I hope that you will have many long years to raise those little girls. They are so precious.

Keep the faith, my friend. We will, tool.

 

[Georgia]

Nicole, I'm sorry you have to carry this burden. I know you try to keep up a bright and optimistic front for your nieces (how old are they now? Must be growing like weeds!); and this has been hard. But oddly enough, a brave and optimistic front can sometimes make you feel brave and optimistic yourself.

And you are simply one of the bravest girls I know. Fate keeps knocking you down and you get back up and continue to fight.

The news about access to Mayo is fabulous. You know you'll be getting the best care. And I bet those people are crazy about you, too, and will keep you first and foremost in their plans whenever any improved treatment becomes available.

I'm sure you won't lose faith or hope - those comprise the bedrock of your being. I presume you still have your wonderful faith community who've supported you over the years?

Please know that we're still here for you. Anytime you need to hear what a great person you are, just come find us.

Hang in there.

 

[bvdr]

Nicole, I'm sorry about everything you are going through right now but do see how being accepted into the Mercy Wings program is a wonderful blessing for you. I know that whatever you have to go through you will not be alone and will be given grace for each and every day. I've got PH too but as yet it is still mild/moderate and being treated with a very low sodium diet, a lot of diuretics and an ace inhibitor. Are you on a calcium channel blocker? I can't take them as they make my symptoms worse but they really help some people with PH. Keep us informed as how you are doing OK?

How old are those little nieces now? I know how you love them and what a place they have in your heart.

Do they still think you have ED too?

 

[Nan]

Nicole, I am glad that you posted to let us know how you are doing! Seems like a lot to handle, but Nancy's post(s) certainly gave you some positive information about medical treatment. They are doing a lot these days.

Take it day by day and step by step and hopefully you will be feeling better soon and able to keep up with those two little girls!

 

[tiggerangelgirl]

You all are such Blessings.

You all are such Blessings.

Hopefully one day I will make it to one of these reunions and finally be able to hug all those who say such beatiful words of encouraegment. This Forum is a wonderful support group and I know it has been a blessing to many others who come here hurt, scared, confused, and maybe they find the answers to their questions or maybe not but,one thing for sure you will always find compassion and the support of friends who are willing to take you under their wings and share their hurts, expirences with sickness, and even point you in the direction of new information. this is why i know that when i'm feeling scared or overwhelmed and even Blessed I can come here and write whatever and know that someone will respond. Thank you all so much!!!!!
This past week has been o.k. I went into CHF real quick and finally got rid of the fluid until I woke up today and can here the wheezing and gurgling of it coming on again, so I'm back on the lasix and zaroxylyn train, hopefully I wont get tto bad my 2nd treatment is on monday and they go by weight and have it mixed up so If I cant get back down they will have to recalculate again
I was wondering if anybody could help me find out how to go about being on a restrictive diet. I know that theses past months have really played havoc and it seems I go into CHF real quick and I thought that I was watching my salt intake , never using more that what it is cooked in but I know that is still bad because of CHF two times in two weeks, any suggestions, also I was wondering I thought that someone wrote that the calcium chanel blocker had made things worse for you I'm begining to wonder that this new medicine is doing that because I had the same problems with the ace inhibtors, my breathing has been worse since starting this medicine when I got back and I have a feeling it is causing some of the problems. Well you all I better go but I want to thank you once again for your responds your words really are encouraging. I pray that all keep your heads up high and your eyes on the Prize( The Good Lord above) when we cant understand or cant take any more he is standing in front of us with his arms open wide asking" what took you so Long", look to him for your strength today and everyday , He wants our fellowship, and wants each and every person to put thier trust in Him.
Love always Nicole

 

[Ross]

I gotta ask, how much Lasix and Zaroxolyn are you taking and is there anything else in there for water? I'm taking Diovan with HCT, 40mg Lasix twice a day, 5mg Zaroxolyn once a day, 25mg Aldactone once a day and I'm still battling CHF likes it's a first job. I cut salt out altogether and it doesnt' seem to make any difference except in my potassium level, it falls through the floor. Cardiologist told me NOT to cut out salt completely, but cut down significantly.

Nancy has some recipes in the recipes forum that are no salt. Some others as well. It's darn hard to make anything without a fairly decent amount of it in the foods already. I know where your coming from there.

 

[hensylee]

We are very fond of you, you know. When you started out you broke our hearts - look at you now.

Pay attention to Nancy. She KNOWS the salt thing and the diets. I long ago dropped most salt. It can be cut out altogether - there is a bit in most things, anyhow, by nature.

 

[Nancy]

There are two ways to control your salt intake, one is to not use any salt at all. The other is to use portion control for those things that have some sodium.

First of all, you have to give up things like canned foods, especially soups. About the only canned things that have little or no sodium are canned fruits.

Then you have to read every darned label of the foods that you buy in the market, even the meats. They have been adding sodium to meats for a long time, and you have to be sure of what you are buying.

Most things have to be cooked from scratch.

Bread is high in sodium. So unless you want to make your own bread without salt, then you will have to limit your portions of bread, store bought cakes, donuts, muffins, cookies etc. They are all loaded, not only with salt, but they have baking soda and baking powder which is loaded with sodium.

Luncheon meats are a no-no. None of them are OK. They are all bad.

Milk has a good amount of sodium. So limit that.

Most frozen vegetables are low in sodium, but you will have to avoid those that have the sauce mixed in. Again, read the labels.

You can buy no salt butter and margarine. No added salt things are available. You have to look all over your market and do a lot of reading of labels.

Here are some of the low sodium things I have been able to find:

Potato chips with no salt
Cottage cheese with no added salt (I think it's Friendship no added salt)
Breakstone sour cream
Heluva Good Cheese No salt cheddar
Eden brand no added salt canned veggies and beans
Mrs. Dash spices
Mrs. Dash marinades
Chef Prudhomme has a wonderful no salt spice mix, but not readily available
No salt butter and margarine
There are some breakfast cereals in the health food sections that have no sodium
Heavy cream has no sodium (for Joe, I cut this by half with water for his cereal instead of milk)
Jams and jellies have no sodium
REAL maple syrup has no sodium (Aunt Jemima and others like that have added sodium)
Alouette cheese spreads have some sodium, but I allow Joe a limited amount of these for a small snack
Swiss cheese (some brands) have low sodium content
FRESH mozarella has low sodium content. It has to be the fresh kind in water in a container, not the plastic wrapped kind.
Corn tortillas have low sodium, for the most part, flour tortillas have sodium.
There is a low, low sodium canned tuna available
Pomi brand no sodium tomato sauce and no sodium chopped tomatoes are good (it is in a box, not a can, made by Parmalat)
There are low sodium crackers available, but still have some sodium, so have to limit the portions
No salt ketchup
Some mustards are low sodium

If you drink lots of soda, watch out for the added sodium. Most sodas have added sodium--WHY????? I have no idea.

Making your own homemade soup is an easy thing. Don't add any salt.

Onion, garlic, spices, are your friends.

Fresh fruits and veggies are your friends.

Meats without any added sodium are your friends.

Watch fish--sea water is salty, so seafood is salty. In addition, frozen shrimp and the like have additional salt added.

I assume that fresh water fish are better sodium-wise, trout, catfish, etc. I think that monkfish has a low sodium content.

There are two online sources of low and no sodium foods that I use regularly. They are nice to deal with and their things are really good.

http://www.mrspice.com/

http://www.healthyheartmarket.com/

The HealthyHeart Market has a wonderful baking soda and baking powder made from calcium carbonate. This allows you to be able to make muffins, pancakes, quick breads and things like that without worrying about baking powder and soda made from sodium bicarbonate.

And pancakes, waffles and dounuts can be made from yeast doughs. That means that you can make them without any sodium problems at all, just a small amount from any eggs or milk that is used.

Making your own bread is not hard at all. The main part of it is waiting for the yeast to rise, but in that case the yeast does all the work, you just wait for it, and can be doing other things while that is happeneing.

Here is my favorite easy recipe for homemade bread.

1 pkg. yeast (I use quick rising)
1 Cup lukewarm water
1 Tab. sugar
3 Cups flour, bread or regular
2 Tab. oil, and a little extra for the rising

Put the yeast in a bowl with the sugar, add the water. Let that sit for 5 minutes while the yeast softens. Add 2 cups flour and mix with a spoon, add the 2 Tab. oil and mix that in too. Put some of the rest of the flour on the counter, dump out the flour mixture, add some more flour over the top and start kneading, adding more flour as needed to keep the mixture from sticking to the board. Knead for about 5-8 minutes until the dough is nice and silky feeling, and doesn't make any holes when you stretch it out sort of thin. That means the gluten is sufficiently developed.

Get a clean large bowl, put a little extra oil in the botton, form your dough into a nice cohesive ball and put it into the oil at the bottom of the bowl, then turn it over to coat the top of the dough. Turn it until the smooth side of the dough is on top, cover the bowl with plastic wrap, and let it sit in a protected area of the kitchen until it rises double in volume.

Dump it out on the counter, sprinkle some flour so it doesn't stick, push out all the air bubbles, then form it into a loaf shape to fit into your greased bread pan. Cover with plastic wrap and allow it to rise again just until it comes to slightly below the top of the bread pan, no higher, or it will go flat in the oven.

Bake at 375 for about 30-35 minutes or until it sounds hollow when you tap on the loaf. Turn it our onto a wire rack and let it cool. Don't slice it until it cools.

I use this mixture for making rolls, even jelly doughnuts. It's very versatile. You can substitute whole wheat flour for some of the flour. You can add raisins to the mixture for raisin bread. the raisin bread will take longer to rise since raisins inhibit the rising some. You can add cinamon and sugar for cinnamon bread.

Once you do it a couple of times, it becomes very easy to do. And it is sort of fun, like playing with PlayDo.

You will find that you will much prefer your own bread to the store bought kind. Store bought bread has lots of preservatives in it and you can tase then right away after you get used to fresh baked bread.

I feel that by cutting Joe's sodium way down, his life has been extended. It's just something we had to do to keep him healthy. I can't find any down side to it, and it has helped my blood pressure too, even though I do add a little salt to my own portions at times.

I see that Arby's is making an advertsing campaign for their no salt added chicken sandwiches. I don't know what the actual sodium content of their sandwishes is, but at least they are trying.

Other fast foods and restaurant foods are loaded. Oreintal foods are OUT!